Fox Trotters

The last post

2010-05-25T22:00:00.005-04:00

This is our 200th post so I thought it would be fitting for it to be the last post to this blog which is a story of our journey with ALS. I will keep the blog open indefinitely as long as blogspot stays around. I want to share our story with as many people as I can that come across it. I have heard numerous stories of people who have stumbled on or blog because they were researching ALS or just wondering what ever happened to Eric or Lori Fox. Many have shared with me that their passion for Christ has been renewed or that they are praying for us and they don't even know us. That makes sharing on this blog all worth while. I don't believe those people come across our blog by coincidence. God uses his Word, circumstances and people to speak to us and this gives us the opportunity to share how good our God is and give him praise, honor and glory.
It will be 5 weeks tomorrow since Eric passed away. His funeral was a month ago. As I think back to that day it seems like a lot of time has passed and also like it was yesterday. God was so near to me that day and in the days prior preparing for the funeral. There were so many times God just showed up and took care of me. I want to thank so many people. There are too many to list but I especially want to thank our friends Rob and DaNae Reynolds who drove from New Hampshire with a few days notice to do Eric's service as Eric wished. You did an amazing job sharing about who Eric was and honoring God. Daniel Groves for being willing to fly here from New Mexico to sing as Eric wished and then fly back to drive his band home in their bus. We decided that Eric would be just as honored if he could send us a video about Eric which he did the day before the funeral. (Dan, I never told you but the song you wanted to sing was playing right before the service started while a picture of you singing that very song at our house was on the screen from the collage of pictures!) Joel Nickerson and Erika Johnson for being willing to sing for us the songs Eric loved. My brother, Kevin who did not leave my side for four days and when he did, he was working on coordinating all of these people, videos, music, schedules, etc. My dad, Steve who spent so many hours making and perfecting the video with all of the pictures of Eric and our beautiful memories that was shown at the visitation and the funeral and will be cherished forever. Kentwood Community Church for opening the church and preparing lunch for everyone. Doug Chapin at Matthyse Kuyper and DeGraaf funeral homes who was so kind and helpful. Dan Bolkema who was asked the night before to share and did a wonderful job. The Kent County Veteran's Honor Guard who honored God, Eric and our country by doing a Eulogy, gun salute, playing Taps and presenting a flag to me that I will treasure. The experience was something I and many who were there will never forget. I want to thank the pall bearers who were all so close to Eric. It was really very hard to choose six. I also want to thank my entire family for your love and support along with all of our friends who helped us in so many ways.
I shed many tears during the service as I held my children close. Eric was such an amazing man, husband, father and friend. But most of all, he really loved God and it was so evident in everything he did. He left a legacy for me and my kids that will never be forgotten.
The day before the funeral, we were trying to arrange transportation for the family to Fort Custer for the burial and I remembered that a friend's father-in-law owned a charter bus. I called her and he had it available which she said never happens. After the funeral, 47 of our family and friends were able to ride together and relax on the drive there. I remember thinking Eric would have just loved this knowing we were all together.
The cemetery was lined with American flags all the way up the driveway. We stepped out and Zach presented Eric's mom, Joan with a flag which was also Eric's wish. I have never witnessed an actual burial as you usually leave and then they cover the casket with dirt. We watched from the road as the hearse drove back to the plot which was dug out. The weather all weekend during the visitations had been rainy, but Monday morning of Eric's funeral the sun shone brightly and it was a beautiful day. As they lowered Eric's body into the ground and pushed the dirt back over the grave, the sun disappeared behind the clouds. Immediately, the song "In Christ Alone" came to my mind. The verse that says "There in the ground, his body lay, Light of the world by darkness slain." When the burial was finished, I thanked everyone for being there and shared the words of that song with them. When I got to the next verse "Then bursting forth, in glorious day, up from the grave He rose again!" The sun shone so brightly in the sky, I couldn't help but look up and cry. I am not comparing Eric's death to Christ's, but I know that God was reminding all of us that when Christ died for us on the cross, the world turned dark because of sin. He took on that sin for us so that we may have eternal life in Him. The next verse says: "And as He stands in victory, sin's curse has lost it's grip on me. For I am his and He is mine, bought with the PRECIOUS blood of CHRIST!" I have always loved that song, but now it will take on a whole new meaning for me. I felt like God was looking down on me and all of us that were so sad that Eric is gone and saying "I see you, I am always here with you and Eric is not in that grave, he is right here with me because of my Son and my love for all of you and you will see him again."
I actually smiled on the bus on the way home as I reflected on the day. I thought Eric would have been so honored by the whole day and how God was glorified even in Eric's death.
I think of Eric all of the time and am reminded of him everywhere I go by pictures, places, songs and my children. I have started a new chapter in my life. Right now I am focused on being here for my kids and spending time listening to God's voice and his plan for my life. He has showed me so many things that I could be doing with my time to glorify Him and I am now praying for God's best for my life. I can easily get busy doing lots of new things, but I want God's best! Please continue to pray for me and the kids as I know so many of you are. We are covered by God's love and grace and are really doing alright. People who don't know the Lord have a hard time understanding that. People who know God's faithfulness know that is the work of the Holy Spirit. If you have followed the blog from the beginning or just came across it today, I pray that you would come to have a true relationship with Christ and accept his free gift of salvation by confessing that you are a sinner and believing that Christ died for you (if you haven't already done that some time in your life). Do it today, don't put it off a minute longer. None of us knows what the tomorrow holds. Don't waste your life. Thank you for being a part of our journey. I know God will use me to comfort others who are suffering just as he comforted me.

2 Corinthians 1:3-7
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.

Some day, I may start a new blog, but for now I have created a Face book page to keep friends and family updated as well as post pictures, etc. If you want to find it or write to me, use my email address: lorifox@sbcglobal.net

The kids and I along with my Sister Kristi, her husband Brian and their three kids are heading out this week for a vacation. We are all looking forward to spending time away together creating more memories.

Thanks for hanging in there as this post is really long, but I have not been known to write short posts.

With love and a grateful heart,
Lori

Reflections on the last few weeks

2010-05-06T22:50:00.005-04:00

As promised, I have more to share. I have been processing so much of the last few weeks in my mind and God has allowed me to see things very clearly that he put in place that I didn't see at the time.
Going back a little over three weeks now, I was feeling very overwhelmed with caring for Eric, mostly because he was always so uncomfortable and everything I did was such temporary relief so it was constantly necessary to be doing something for him or so it felt. He was also afraid for me to leave at all. I hadn't been out of the house for two weeks prior to then even when our visiting angels caregivers were there. On Saturday night, April 10th I was laying in bed thinking how can I keep taking care of Eric like this? I believe God reminded me that in January when we began with Hospice, they told me that we could go to Trillium Woods in Byron Center for respite care 5 days each month or to help manage anything out of my ability to do so at home. This center is so beautiful, we had been there 1 1/2 years ago when Eric was awarded the Eric Fox ALS fund that he secured by speaking to High School students at Hudsonville about ALS. I decided that I would ask Eric about it the next day. Eric was reluctant about going to Hospice to stay so I decided that I would go with him since Eric's mom was staying at the house that week and could get the kids to school for me. This way I could go and be his wife while someone else did the caregiving. We arrived about 5pm on Wed. April 14th and the first night I realized how much I had been doing on my own as most of the nurses there were shocked that I was still taking care of Eric by myself. I honestly feel that God gave me the strength to do it as long as I did and I never felt like having a pity party for myself. I loved Eric with everything in me and wanted to honor his wish to stay at home and I felt it a priviledge to care for him the way that only I knew how to, but I was looking for some professional help and a break.
It was very difficult to turn over with new nurses every 8 hours and explain everything to them because Eric's communication was nearly nonexistant at that point, even I struggled to understand him at times. He had also become fully dependant on wearing his BiPap 24 hours a day due to shortness of breath. After a couple of days staying with Eric, he was more comfortable, his meds were well managed and he was sleeping in the hospital bed even through the night. His feet that had been swollen so bad with extreme Edema were back to normal and he was even smiling some. The joyful moments were much fewer and farther in between these last few months because the disease had taken so much from him. Hospice told me that they had admitted Eric for medical necessity and that he still had the respite time and the VA would cover him indefinitely to stay there. I struggled with this, only because Eric wanted to be home. I was able to sleep at home after the first few nights and the nurses were learning Eric's care better and I was really enjoying spending time with my kids and a few friends. I was becoming unable to lift Eric for transfers, showers, etc. I had Eric's parents support, my Pastor, the hospice social worker and many friends and families support to keep Eric at Hospice for longer than the original 5 days I had planned.
I talked to Eric on that Saturday night and shared everything I was feeling with him, how much I loved him, how much I was concerned about his care, how much I enjoyed being there for the kids in ways I haven't been able to in so long. I also told him that I wanted him to finish strong. He has left such a testimony to so many in his life since he accepted Christ and the way he has taken ALS and made it a platform to testify to the glory of God even in the trials. It was really hard for him to communicate, but he said he would stay for me. I spent most of my days at Hospice and nights at home with the kids while friends stayed with Eric.
On Tuesday, our Pastor had visited Eric while I took Maddie to the doctor for a breakout she got that morning on her skin. The Pastor later shared with me on Thursday what he had talked about with Eric about staying there, finding peace with the fears of the disease, knowing he had to consider himself, me and the kids in what we chose to do, thinking about heaven and eternity and he spent time praying with him that day. About a week later, I found out my Bible Study leader also stopped by Tuesday to give me a hug and peeked in the room while the Pastor was there. She did not interupt as she didn't see me and saw that someone was praying with Eric. She stopped back later and said she saw "two men meeting with God" so she left. I was back later that day and Eric was very tired and quiet and I went home that evening to take Zach on our date while our friend and caregiver were with Eric that night. My last words to Eric were "I Love You" as were his to me.
The following morning, Wednesday April 21st, I was held up by a few minor things like a phone call with a scheduling problem, I stopped somewhere for a few minutes on the way in, I forgot my pass in my car in the parking lot which I always had clipped to my clothes every other morning, I stopped right outside Eric's door to talk to the nurse about how his night was which she replied "really good" and then I went in to his room. When I went over to him, I froze as I touched his hand and looked at him. I yelled for the nurse who came in and checked his pulse and said "I'm afraid he is gone". "No! he can't be gone, I wasn't here with him!"
I was nearly hyperventilating, I was in shock and so inconsolible. The doctor came in and told me he just checked on Eric less than 20 minutes prior which I know because I saw him going into the building when I went to my car to get my pass. Our favorite nurse was there that day and they both sat and prayed with me and called my friend Sherri to be with me. The Chaplain came in and also talked with me about my shock, guilt and grief. I am sharing this with you because I thought at that moment, I would never be able to live with myself for not being there and him not being at home. I thought I could never overcome my sadness of losing Eric. I spent the rest of that day preparing to tell my kids and all of our family.
The very next day, God lifted me up and gave me grace and peace that I can't even begin to explain to you, peace that can only come from God. I was able to look back at everything and begin to understand how God orchestrated it. Eric's body had begun to shut down, his sleeping more, his lack of appetite, respiratory changes, his lack of communication, and not wanting visitors. I really thought we had more time, but I wasn't seeing the signs. ALS had taken his physical life from him. He just stopped breathing and went without a struggle in a matter of less than 20 minutes into the arms of Jesus! I truly believe Eric felt it was alright to let go of this world, secure in his eternal destination, peaceful knowing that me and the kids would be taken care of. He slipped from this world and was instantly in his new whole body in the presence of the Lord. I can't tell you what joy that brings to my heart. Me and the kids miss Eric more than you can imagine and the sad times are still so fresh in our hearts, but we all know that we will see him again and our life on this earth is but a breath compared to eternity. I feel like God protected me by not having Eric die at the house or with me there where I would have still been helpless to save him and been alone. These are things that have been so clearly revealed to me and while I know I can't know exactly what God had planned or why things happened the way they did, I do know that I have peace that passes all understanding that I never thought I would find that day Eric passed away. Eric loved people and he loved life and he was a fighter who beat the odds of ALS living 5 1/2 years with the disease.
"Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed." says the Lord, who has compassion on you." Isaiah 54:10 I pulled a notecard out of my desk with this on it a few days after Eric died from a Bible study I did over 4 years ago. I pray that those of you who are grieving the loss of such a wonderful man can feel the same peace God has given to me in this very difficult time.

I will share later about Eric's funeral and burial more ways God revealed himself to me.
To live is Christ, to die is gain. Phil 1:21
Lori

A song that has encouraged me this week

2010-04-29T23:10:00.001-04:00

Take a few minutes and watch the video above (don't forget to mute the jukebox)
I keep hearing this song on the radio by Kutless called That's what Faith Can Do. It lifts me up, it carries me and surrounds me with hope in my sadness. This is how I feel about my faith. "when the world says you can't, it will tell you that you can" The lyrics are on this video. They have spoken to me in the last few days. God has given me grace and peace to face each day. I will post more soon. I have so much to say. Monday, the funeral was a day that honored who Eric was and glorified God. I am so grateful for everyone who helped contribute in so many ways. I have seen God so clearly in these past few weeks and I hope to share with you specifically His goodness.

Be blessed!
Lori

To live is Christ, to die is gain

2010-04-23T23:33:00.002-04:00

I was thinking I would wait to post until after the funeral, but I am not sleeping much and writing helps me process things. I think it will help all of you to know when you come to the visitation. I want to first say thank you for all of the love, support, prayers, food and notes of encouragement. Most of the notes all have encouraged me to stay focused on the blessing in this tragedy. I am so comforted that Eric is in heaven right now and when I get sad, I have to turn my thoughts to Eric in heaven seeing God face to face hearing "well done, good and faithful servant", singing at the top of his lungs praises to our God, dancing like a crazy man like he did when I met him in college 19 1/2 years ago. (He was one of those that you had to back up and make a circle around so he wouldn't knock you down), Playing hockey, football, basketball or baseball and encouraging the whole team, Eating the most savory of foods (by mouth), meeting and becoming instant friends with Abraham, Isaac, Jacob, Moses, Paul, John, David (oh, to imagine) and all the prophets and saints and his friends and family that have passed before him, laughing that laugh that we all miss, running circles around everyone in his new body, and seeing colors and things we can't even begin to imagine.
This has been a very emotional week as you can imagine, but I am already feeling his mercies new each morning and sensing the peace that passes all understanding. The day Eric went to be with the Lord, I didn't think I could possibly get through it, I was in shock and disbelief and then I had guilt and if only I did this or that and I thought it would take months or years for God to get me through these things. I need to tell you that I know it will take a long time to really stop hurting in my grief, but God has taken so much of my burdens and given me so much comfort that I couldn't have even imagined that came by the very next morning. Every day is such a gift to each of us and his mercies are new in the morning. This is the way that Eric lived each day and I will continue to trust in God for my strength.
May God's peace and comfort encircle all of you who dearly loved Eric too,
Lori

Details on Visitation and Funeral

2010-04-22T18:31:00.005-04:00

The following will appear in the GR Press on Friday and Sunday:

Eric J. Fox, age 40, of Grandville, formerly of Jenison, went to be with his Savior on Wednesday, April 21, 2010 after a courageous, five year battle with ALS. His genuine love of life and for people gave him the ability to make friends in minutes. Eric has fought the good fight, he has finished the race and has kept the faith. He was loved and will be dearly missed by his wife of 14 years, Lori; his children, Zach and Maddie; parents, James and Joan Fox; sister, Julie Fox; brother, Jary (Erica) Fox and their children, Emma and Katelyn; parents-in-law, Steve and Linda Kammeraad; sister-in-law, Kristi (Brian) Rogalske and their children, Ashley, Nathan and Emily; brother-in-law, Kevin (Stephanie) Kammeraad and their children, Carlos and Maria; and many extended family members and friends.

Funeral services will be held Monday at 10:00am at Kentwood Community Church, 1200 60th St. SE, Kentwood with Pastor Rob Reynolds officiating. Interment Fort Custer National Cemetery.

Those who wish may make memorial contributions to ALS Association, or Global Partners c/o Rob and DaNae Reynolds.

Relatives and friends may meet the family Saturday from 7-9 pm, Sunday from 2-4 and 7-9pm at Matthysse-Kuiper-DeGraaf Funeral Home (Grandville) 4145 Chicago Drive SW.

Condolences may be sent online at www.mkdfuneralhome.com or the family’s blog at www.ericjfox.blogspot.com.

Wednesday, April 21, 2010

2010-04-21T21:09:00.002-04:00

This is Brian, Lori's brother-in-law (Kristi's husband). Eric went to be with our Lord earlier today. Eric was always so excited to be serving our Lord and today he went to be with Him. Please keep Lori, Zach, Maddie and the entire family in your prayers as they grieve the loss of a great husband, father, and most importantly, servant of Christ.

Lori asked if I could make the posting tonight as I'm sure you can understand she is overwhelmed right now.

Thank you so much for your thoughts and prayers. Details of visitation and the funeral will follow. Lori is still trying to get a hold of some individuals and make final arrangements.

A quick update

2010-04-01T21:42:00.003-04:00

I have to say that time still seems to go by fast as it is already Spring and it seems like just yesterday it was January and I was so worried if Eric would make it through the night a few times. Early January, Eric's goal was to make it to Zach's 13th birthday and his 40th on January 17th and January 21st respectively. When he did that, he told me he just wanted to make it to Spring. I remember thinking to myself, I don't know if that is possible and even I don't know if I can continue to take care of you until Spring as I was feeling so overwhelmed. Well, God is bigger than my thoughts and fears and here we are enjoying a beautiful Spring day together! God is so good!!! Eric got outside a little bit today and I even washed all my windows today inside and out and Zach and Maddie cleaned the screens and each other with the hose. It was a good day! We were introduced to a new caregiver tonight with Visiting Angels who will be working a few hours in the evening once a week. He seems very nice and very knowledgable and he said he felt like God told him to take this job. I know God is always providing in so many ways and this could be another blessing for our family. We are also starting with a new girl tonight to help for one night a week who we found through prayer and a friend of a friend.
Please pray that this would be a good fit. I am really looking forward to getting a full nights sleep once she is trained.
Other good news is my brother and his family of four are home from Columbia safely. Maria is 2 and adopted from Columbia. Isn't she beautiful!! Carlos is 5 and was adopted from Guatamala when he was 1. They arrived on Tuesday night and me and the kids went to the airport to meet them with my family. It was late so we had a caregiver stay at the house with Eric. They were so tired but glad to be home. I posted pictures above.

Enjoy your Spring break and vacations if you are taking them!
Lori

Go State!!!! Final 4 again!

Daddy Interview

2010-04-01T14:34:00.003-04:00

I decided I should do this for dad too so the kids did this interview for Dad about a week ago. Here are their answers. Maddies are first marked with an M and Zach's are second marked with a Z.

Daddy Interview -

1. What is something dad always says to you?
M and Z - I love you!

2. What makes dad happy?
M- a hug. Z- Making him feel loved, spending time with him.

3. What makes dad sad?
M-fotos. Z- not being able to do things he used to be able to do.

4. How does your dad make you laugh?
M- He makes jokes. Z- he jokes around on his computer.

5. What was your dad like as a child?
M- funny. Z- funny, crazy.

6. How old is your dad?
M and Z- 40

7. How tall is your dad?
M- he is tall a lot. Z- 6'3"

8. What is his favorite thing to do?
M- listen to music. Z- hang out with family.

9. What does your dad do when you're not around?
M- watch TV. Z- he watches TV and movies.

10. If your dad becomes famous, what will it be for?
M- singing. Z- writing a book about his life and testimonies living with ALS.

11. What is your dad really good at?
M- driving in his wheelchair. Z- cheering people up, telling people about God.

12. What is your dad not very good at?
M- talking. Z- being patient.

13. What makes you proud of your dad?
M- that he is so nice. Z- he is a great dad that I hope I can be when I grow up.

14. If your dad were a cartoon character, who would he be?
M- I Carly. Z- Fred Flinstone.

15. What do you and your dad do together?
M- play games. Z- we watch TV and movies and talk about life.

16. How are you and your dad the same?
M- curly hair. Z- we are both tall and loving to others.

17. How are you and your dad different?
M- Eyes. Z- I am clumsy like my mom.

18. How do you know your dad loves you?
M- because he says it to me all the time. Z- He tells me every night before I go to bed and when I get home from school. He shows it during the day.

Mama Interview

2010-04-01T13:44:00.003-04:00

I read this on a friend's facebook page about a year ago and decided to have my kids fill it out. Here are their answers. Maddie's are first and marked M and Zach's are second marked Z. I loved their answers and plan to have them fill it out every year.

Mama Interview -

1. What is something mom always says to you?
M- No. Z- I love you.

2. What makes mom happy?
M- when I'm good. Z- spending time with her, getting a good deal!

3. What makes mom sad?
M- if daddy would die. Z- sad movies.

4. How does your mom make you laugh?
M- Tickling me. Z- she is always good at joking around.

5. What was your mom like as a child?
M- she was like me - crazy. Z- funny, clumsy :)

6. How old is your mom?
M- 55 0r 40. Z- 38

7. How tall is your mom?
M- 15ft tall. Z- 5 foot.

8. What is her favorite thing to do?
M- play with me. Z- be with family.

9. What does your mom do when you're not around?
M- on the computer paying bills. Z- go shopping and help dad.

10. If your mom becomes famous, what will it be for?
M- having a lot of money so we could buy anything. Z- a famous actor or famous Christian book author.

11. What is your mom really good at?
M- typing and going on the phone. Z- telling people about God, Math

12. What is your mom not very good at?
M- she drops a lot of stuff. Z- trying to be cool :)

13. What does your mom do for her job?
M- I don't know, Bible Study, teach? Z- helps dad, part time accountant.

14. What's your mom's favorite food?
M- fruits and vegatables. Z- Salad. (sounds healthy, you think I'd be skinnier)

15. What makes you proud of your mom?
M- that you play with me. Z- she is able to help my dad.

16. If your mom were a cartoon character, who would she be?
M- Hannah Montanna. Z- Wilma Flinstone.

17. What do you and your mom do together?
M- puzzles, excercise. Z- we go on dates and hang out together every other Tuesday.

18. How are you and your mom the same?
M- Brown eyes. Z- we are both clumsy and funny.

19. How are you and your mom different?
M- mom has earrings and sparkly makeup and I don't. Z- I am 13 and she is 38. I'm in school and she isn't.

20. How do you know your mom loves you?
M- when she kisses me all over and tells me. Z- she tells me every night and then some.

21.Where is your mom's favorite place to go?
Unanamous - COSTCO!

Hope you enjoyed this. If you want me to email you the blank document to try it yourself, let me know.
Lori
P.S. I am sitting outside typing this, enjoying this beautiful day God has given us! I love Spring! I have the window open so I can hear Eric's Dynavox and have gone in about 4 times for him now, but I don't care if I can be outside for just a bit, I will take it!

Feeling kind of down and weary... confessions of a caregiver

2010-03-22T20:25:00.003-04:00

It has been a while since our last post. Things have actually been going pretty well. Eric has been doing pretty well and his spirits have been lifted up. We have had a few visitors and have really enjoyed utilizing the Dynavox for communication. It has really helped us out and we use it daily as even I struggle to understand him now. One thing you hear more often then not with ALS is to get things BEFORE you need them because you don't know when you will lose an ability and suddenly be in need. I think we have done well in mostly staying ahead of the disease in this way. God has been good and gracious to us and provided our needs so abundantly. It is so clear when we look back over the span of this disease. It can only be explained by God. There are no coincidences with God.
Sometimes, however, I let the moment suck me in or even worse the uncertain future. We always have rough nights. Last night was justEric is quite uncomfortable most of the night and is unable to sleep continuously for a night. I don't even remember when the last full night sleep was. Each night varies some, but usually consists of getting up 2-3 times every 1-3 hours and each time we are up it is usually for about half an hour. At this point, we both have a hard time falling back to sleep. We have varied the medications for Eric and some help and some do not. It is so frustrating to me that I can't make him comfortable. Last night, I just started crying uncontrollably for a long time. I felt like I was beyond myself and I know that made Eric sad for me too. When I am beyond myself, I can only rely on God and others he puts in our lives to help us. I am trying to focus on some verses to keep me strong as I sometimes feel like I can't do this on my own. Here are some that have encouraged me and I am trying to commit them to memory for when Satan shoots his fiery darts at me and tells me I can't.

Matthew 11:28-30
"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."

Philippians 4:13
I can do everything through him who gives me strength

Ephesians 3:16-21
I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Isaiah 40:31

but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Psalm 46:1

God is our refuge and strength, an ever-present help in trouble.

I could go on with so many more that come to my mind, but these are a few of my favorites. I have learned to treasure God's word and it's promises for me. I know they are true and that is why I know we can get through each day with His help.
I have read a few books for caregivers or care for the terminally ill. Most of them I skim as I feel they are more geared for taking care of your elderly parents and it is not relative to me. I have found one I can relate some too and that encouraged me called Precious Lord, take my hand by Shellie Beach and the second one she wrote called Ambushed by Grace had a quote I just loved by Robertson McQuilken. It says "Love takes the sting out of duty." This sums it up for me. I made a commitment to Eric and a covanant to God in our wedding vows, "for better,for worse, in sickness and in health, til death do us part." I intend to honor that because I love Eric with all of my heart. I want to encourage all caregivers in whatever role you play as I have walked in your shoes and I know it can be hard. Keep focused on God's promises and not on your opposition. I am reminded again of Joshua and Caleb and their ability to see the promised land and go forward rather than the other 10 who only saw opposition and obstacles ahead of them. Can you imagine what they would have missed out on? I know God has good things in store for me, Eric and all of his children. I already feel better reminding myself of what I already know. When you are in it, some days it's just easy to have a pity party for yourself.
Please pray for Eric for comfort and encouragement in his battle with ALS and for me for strength for each day and a gentle spirit at night. We will be trying some new caregivers at night this week I hope. Please pray that it goes well and we find a suitable fit for care for Eric at night so I can get some sleep one night a week.
Have a good week. Spring is here! ( I think )
Lori

He Is With You

2010-02-28T00:05:00.002-05:00

YouTube - He Is With You
Check out the link above (be sure to pause the jukebox first at the top of our blog)
My sister posted this link above on her blog the other day for the song He is With You. I have never heard the song, but Eric and I watched it with tears and loved it! What a great reminder that no matter what we are going through, we are not alone. God is with us through every step of our journey in life. My favorite part is Joy comes in the morning because that is so true. When we have a bad day, God always comes through and shows us the joy in our life. We had a rough start to last week and another emotional day with Eric being very non responsive. We have tied it to the possible effects that Ativan had on his system so we have cut that out. The last part of this week has been really good. Eric started using his Dynavox to communicate with us and has been "talking" up a storm and I love it. We've had some visitors too who enjoyed talking with Eric and laughing as well at his humorous commments. It is good to have Eric back and making an effort (it takes more for him to do this than to sit by himself quietly) to spend time with family and friends. It's good to laugh again.
My brother, Kevin and his family are in Columbia right now with their newly adopted daughter Maria and we were able to "meet" her last night on Skype which was so cool! She is beautiful! Pray for them as they get to know each other and bond together.
My Sister is almost done with radiation but is having horrible burns and side effects on her neck so keep her in your prayers too.
Both of their blogs are on the side of our blog if you want to check up on them.
ALso pray for Eric's dad as he is going tomorrow to a pain clinic to help with his pain.
Praying that God will bless us with a good week. We will miss the Olympics being on as we have enjoyed watching them together as a family.
Blessings to all of you!
Lori

Communication, more than just talking ... an insight to ALS patients from a wife who cares

2010-02-12T13:25:00.011-05:00

Someone asked me the other day about how to read Eric's responses to some particular visits and their questions were very valid. As you know, I can read Eric better than anyone. Lately, I tend to play offense and defense for Eric in these areas. He does not talk as much as it does take more effort physically. His smile or nod is often his response or it can be that he is processing his response. He takes longer to reply as well as even trying to articulate what he wants to say takes more time. I have had to learn this as I await his reply. I am usually in a hurry wanting a yes or no answer (this is mostly when I am helping him with a need). But when he has something to say, I stop what I am doing and look at his face as I wait for him to talk to me.

Here's the tough part, most people are social creatures and talking is such a huge part of how we communicate. When we don't get a response, we instantly start to process what is wrong, what are they thinking, are they upset with me? This makes most people uncomfortable so they either talk more or leave the situation. Many people can't understand Eric as well and this takes great effort or interpretation (usually by me). When there is a lot of noise or commotion going on around, this is even harder, of course. This is why we have tended to have less people over and done more one on one visits. Things like watching big sporting events are an exception because these can be events to enjoy together, but even that tends to be a bit much for Eric to to take in. Eric had a lot of fun having everyone over for Super bowl, but couldn't do that all the time like he used to. They say that when you loose one sense, your others are heightened, like when you can't see, you can hear sharper. Eric hasn't necessarily lost a specific sense as much as abilities, but his hearing is sharp as a tack. He hears the mail truck from a mile away and always amazes me on what he can hear that I don't. This can be good, but also bad as he can sit in a room with a lot of things going on like conversations, kids playing or screaming, phones ringing, washing machine going, dog barking and he is on complete overload. We tend to tune in to one thing and block out the others, but Eric is not able to do that. I try to be cautious with this when people are here to keep things more low key and quiet. Those of you who have known Eric, know that he used to be able to do everthing at once and the more people the better, the more going on the better and the louder the music, the better, etc. It's really hard to see Eric this way as it is so different than the way it used to be, but I understand it and want to make things easier for him. It is really part of the disease as the more people I have met or talked to have felt the same way and can relate. This is why I thought I should post this to help you understand the disease and how it affects people. I also want people who do visit to feel comfortable as they understand what Eric is going through better.
To understand what Eric is saying or feeling, you need to look right at him and focus on what he is saying, reading his lips and expressions and be patient for his response (we tend to want to finish other's sentences with what we think they will say and that can be helpful or frustrating). Sometimes he is fine and doesn't have anything to say and sometimes he doesn't say what he wants because there is no pause for his response. Over a year ago, we met a family in Monroe at an ALS skate benefit and the husband had ALS and his speech was affected. His wife and daughter were often finishing his sentences for him which he would nod approval of. When I was talking to him on my own, I felt this draw to look at his face and listen attentively to what he was saying and I was surprised how well I could understand him and respond to him in a kind way. I felt so strongly that he just wanted to be heard and that most people probably brushed him off quickly or looked to his spouse for translation. I was prepared back then for what may come with Eric and what he might feel like when he loses the ability to communicate.
The people who have been around the most are the ones he tends to share more with and they become more comfortable with the changes going on with Eric too.
Sometimes it's OK to come over and just be here with Eric, whether watching a movie, rubbing his aching elbows, back or feet, praying with him, reading a book to him or just giving him a hug or squeezing his hand. We don't always have to talk to show love which is strange for most people, because we are social by nature (me especially) I love to talk!
If you are reading this and feel like, I have never come over to visit, please don't feel like you need to now, know that your prayers, emails and cards are a great way to show your love and support. We are blessed and have wonderful friends and family surrounding us.
Lastly, with the way Eric's chair is driven now, he has a device around his neck that steers his chair. Some people are afraid to hug him as this is in the way. Eric still appreciates hugs as we all need touch. You can ask him if it's OK to hug him and he will let you know if it's safe to give him a squeeze. My mom hugged him once with his chair on and they almost both went for a ride :).
I hope this helps not just to understand what Eric is feeling, but also help you unserstand others with ALS or similar disabilities.
Love,
Lori

30 days to live message from Life Church

2010-02-09T21:54:00.001-05:00

LifeChurch.tv - Message Archive - 30 Days to Live

We have been watching a lot of sermons on line from Life Churches main campus based out of Oklahoma and have watched some really powerful messages. Click on the link above from the Series 30 days to live that we watched this morning that had a man who had ALS speak who reminded me of Eric. The message was so powerful and the series is based on the Verse in Psalm 39:4-5
"Show me, O LORD, my life's end
and the number of my days;
let me know how fleeting is my life.

You have made my days a mere handbreadth;
the span of my years is as nothing before you.
Each man's life is but a breath.

The Pastor also shared advice he was given regarding making decisions. When deciding on what you do with your time, ask yourself would you do it if you only had 30 days to live? Today, I thought again about how we spend our time at home and thought, I want to do things that matter for eternity. We still have opportunities to do things that matter for the Kingdom especially regarding our kids and the people we are in contact with. We can share with so many others through our blog as well.
Take a half an hour and watch this message from the red link at the top of this post, it is powerful and it will give you a new perspective on your life and what is really important. Don't forget to pause the jukebox at the top of the blog first so you cn hear the message without music over top of it :)

If you want to watch other messages, go to www.lifechurch.tv and go to I want to watch messages and pick a message or series from their archives.

Be blessed,
Lori and Eric

A Marine has requested that we post soon

2010-02-08T01:14:00.003-05:00

Our friend Michael has just come home from Marine boot camp and has been waiting patiently for an update. He was here tonight with his family and some other friends for Superbowl which was a nice change of pace for us.
We know it has been a while since our last post. We have had some milestones since then. Zach became a teenager and Eric turned the big 4-0! Thank you for all of the cards, e-mails and calls on Eric's birthday. It was so encouraging all of the love you shared. Since then, things have been relatively normal around here, actually quite boring since it is the dead of winter and Eric is getting cabin fever. It has been a while since he has left the house. When it is so cold, the risk of getting sick and being so cold while he is out offsets the pleasure of actually getting out. We have gotten somewhat into a routine, but you can only watch so many movies, listen to so many podcasts and watch so many games before they all become a blur.
Eric's health is better than last month except that he is just plain uncomfortable most of the time. This is a difficult adjustment to face as I can't help him with this when he can't find a way to get comfortable. It seems like a lost cause which is so frustrating for both of us. I hate seeing him in this state as I know it has to be so hard to handle day after day. We are working on trying to get his chair more comfortable and managing his pain (discomfort). Night time is the worst and I have had a hard time with the way I respond to Eric in the middle of the night. It's like I become someone else and I don't like it, but can't stop myself so please pray that God will give me and Eric supernatural rest. I know when we are weary, He will give us rest.
I have been getting out to the store, running errands etc. a little more since Eric is doing better when we have help here and that has been nice for me, but I wish Eric could get out too. Spring is coming, but not soon enough for us. If we could move somewhere warm, we would do it in a heartbeat!
The kids are doing really good. We are so blessed to have such great kids. We started date nights with mom and I really have enjoyed taking two hours every other week with each kid to spend time with them one on one.
Please pray for Eric's comfort, mood and strength to endure as this disease is taking a toll on his body. Eric and I can really feel your prayers being lifted to the Father on our behalf. I have a wonderful husband who is an amazing man of faith and that is how we get through every day. Still thanking God for every day together and looking for God in the moments even when it seems so dreary and dark.
Longing for the sun to shine again soon,
Lori and Eric

P.S. we thought the blog needed a makeover... what do ya think? It's still a work in progress.

God answers prayers!

2010-01-18T21:55:00.003-05:00

I wanted to quick update you since my last post. I updated on a Thursday night over a week ago around midnight and asked only for prayer for Eric. Most of you probably opened the blog sometime on Friday and started praying. Around 9 at night on Friday, it was like Eric woke up from a two day nap. Since then, he has continued to get better than he was and is basically back to the same point he was in December again. His mom and I were very worried about his state. I believe God heard our prayers and restored Eric and is extending his life because he still has work to do here. I still watch Eric be used by God with our kids, people who come into our home, phone calls and connecting people together to do God's work and am still being reminded of what an impact he has had on so many lives from his walk with the Lord. We are still praying for a miracle of healing, and know that while we wait on the Lord, we still have work to do! His work!
Eric started to tolerate his bi-pap that Friday for 6-8 hours at night. Some would say it was his mindset to do it, but he hadn't worn it for more than 30 minutes at a time without needing to have it taken off prior to that so I again believe it was part of answered prayers. We have been sleeping so much more at night and our friend Stephanie is helping us out with the kids in the morning getting off to school which is so wonderful for all of us. The kids love her and she loves them! I am able to get much needed sleep too. Eric's mom has been around a lot helping out too which is so nice. His brother and family have come up two weekends in a row too to help out. We are really being taken care of and we thank all of you who have had a part in that even if it is just by praying. That is so powerful! Keep praying! God is good all the time!
Other quick updates:
Lori: I went to the doctor today after a couple weeks of pain in my right forearm and found out I have tendonitis so I have an arm splint and ibuprofin to help take care of that. Please pray that the pain will go away and it will get better soon.
Zach: Yesterday was Zach's 13th birthday!!! I can't believe we have a teenager in our house!!! He has been growing like crazy and is now taller than me! We had a special day together and Eric gave Zach a special letter he has been working on for him telling him what a fine young man he is turning out to be. He had some guys sleepover last night since Grandville had no school today. He is still playing basketball and started guitar lessons with our pastor.
Maddie: We found a dentist for her in Byron Center (thanks for all the referrals) and had her front tooth looked at. It has been loose for about two months and ended up sticking out crooked in the middle of her gums while the permanant teeth were making their way in. Maddie cried the whole way to the dentist, he took one look at her, numbed it a bit and attempted to pull it. Unfortunately, the stubborn thing didn't come out so he had to go back in with his "tooth puller tool". Oh... was this rough for mom to watch. After I helped hold her hands down, he got it out. After lots of tears, hugs and a trip to Craig's Cruisers for some fun (her reward for being so brave) she is now happy to have it out. He told us that she is a tough orthodontist case and we should get in soon for a referral for braces! She is only 7but going on 13.
We are blessed to have such a wonderful family and blessed to call you friends!
Have a great week!
Lori

2010-01-06T16:39:00.004-05:00

We have not posted for a while. After our last post, during the week of Christmas, Eric's breathing was not good and he seemed very lathargic at times. I actually went to bed each night crying thinking he might not wake up. By the following Sunday, he seemed to be so much better. I don't know if something was wrong or he coughed up the problem as he still coughs a lot. I am relieved that he is doing better but still very aware that he could have those problems again as the disease is progressing. This disease is leaving him in a state of pure dependance, which is so hard for all of us.
We have been talking about hospice coming in to help since November at his las ALS clinic appt. We decided we would call them after his feeding tube was put in and we had been trained on using it. Then is was Christmas so we decided to wait til the week after Christmas. They came in last week Monday and we have been meeting the support staff from Faith Hospice in Holland. We have a nurse who comes once a week, a girl to help with personal care two hours a week and a social worker and a Chaplain who came to visit us. It was a bit overwhelming at first, but now it will be what we need, when we need it. Most people think of death when they hear the word Hospice. This is not neccesarily the case for us. They are here to provide care and comfort support for us since Eric has a terminal disease. We know someone with ALS that has had hospice support for some time now. We have no guarantee of tomorrow and are still thanking God for each day he gives us together as always.
Eric is not having a good day today. We have cancelled all of our plans today and he has spent the whole day in the bedroom in his chair. He has been uncomfortable and very tired and weak. It has been a rough week. My sister received news that her cancer has returned and they don't believe it will ever go away. She is starting chemo again next week. Some have said that they think our family is being tested like Job. I have just read the beginning of Job again in my Bible study this week and I don't believe anyone on this earth has been tested as Job has or responded as he did. After his animals, servants and then his children had been killed all within moments of eachother, he responded in Job 1:20-21:
At this, Job got up and tore his robe and shaved his head. Then he fell to the ground in worship and said:
"Naked I came from my mother's womb,
and naked I will depart.
The LORD gave and the LORD has taken away;
may the name of the LORD be praised."
I try to worship God in the tough times, but I don't find it the first thing I always turn to. God has been a constant comfort to our family and I have also read some verses yesterday in 2 Corinthians that talk about God's comfort. I love all of these verses and I will just reference them as my posts tend to get a little long and I want to finish this post. 2 Corinth 1:4-6, 2 Corinth 2:14, 2 Corinth 4:16-18, and 2 Corinth 12:9.
Eric is not up for visitors lately, but please send your comments, e-mails or phone calls and I will share them with him. Please continue to pray for our family as that is all we really need right now.
Love,
Lori

Article in today's advance and blessings from God

2009-12-22T16:34:00.003-05:00

We were blessed to be interviewed by Cathy Runyon at the Advance Newspaper for an article that was printed in today's Advance. She did a wonderful job portraying our life with ALS, but ultimately our hope in Jesus Christ, especially as Christmas approaches this year. If you are local, check it out, if you are not, here is a link to the article on line
http://www.mlive.com/grandvalleyadvance/index.ssf/2009/12/christmas_offers_local_family.html

Eric has been struggling with a cough for some time now and we have not been getting much rest. God has lifted our spirits on Sunday as we were doubly blessed to hear our good friend, Daniel Groves perform at GR First on Sunday with some incredible music to our Lord that drew us closer to Him and then Sunday night when we were again feeling the enemy attack as this disease has become so difficult to bear at times, a bunch of families from our new church came to our house singing Christmas carols with huge smiles on their faces (especially the beautiful children singing loudly in front) Eric was not able to come to the door at that time, but I stood and listened to their beautiful voices and Eric listened from the other room as we both shed tears knowing how much we are loved by so many of you, but most of all knowing that we are loved by God. He sees us when we are hurting and He lifts us up out of the pit and wraps his arms around us in such tangible ways. I had prayed specifically just an hour before that God would show himself to me and He truly did!

This Christmas, lift someone up and show the love of Christ as you celebrate his birth and the true meaning of Christmas!!
Love,
Lori and Eric

I am attaching some photos of us spending some time cuddling with Eric in his hospital bed. He may not be able to sleep in it, but this was the first time Eric was able to put his arms around the kids and me to hold us for a while. Of course, our beloved dog, Prince had to get in there too!

three steps forward...two steps back

2009-12-10T21:27:00.002-05:00

Eric has been adjusting to having the feeding tube put in. We were so focused on getting it put in safely, we hadn't thought much about what comes next. While we are still so grateful that the procedure went so well and God's hand of protection was on Eric, it has been hard for Eric to adjust at home. He has not slept in his hospital bed since the surgery and can no longer wear his bi-pap overnight or for very long periods. His feet have swollen up again from sleeping in his chair. He has also started a tickle cough that comes and goes daily and sometimes causes choking. We have started supplementing Eric's meals by feeding tube once or twice a day and we are getting used to that. He continues to eat a softer diet as well. Eric has been very frustrated with this disease lately and his spirit has been very down. I tend to follow suit when he gets this way because we are both again very tired most days. I understand that Eric can't be happy all the time when he suffers through this disease. I often try to imagine how I would feel in his shoes and I don't even know how I would respond. I don't know what we would do if we didn't have Christ's love and His grace in our lives. Eric's dad has returned to the hospital again this week and is now home awaiting surgery in Ann Arbor to be scheduled. My sister had her lymph nodes checked because she felt a lump and although she had a "clean" petscan, the doctor says he is pretty sure it is cancer so it will be removed and biopsied. My grandpa had surgery for his cancer last Friday and they believe they got it all (Praise God) and he is now at a nursing home recovering, but he is very down as well. Life can just be so hard sometimes. You sometimes wonder how much one family can take. The snow has hit hard in Michigan and we have been cooped up inside. We have been enjoying being here all together as family. My kids actually slept with their PJ's backwards, spoons under their pillows and flushed ice cubes down the toilet last night (those of you not from Michigan, these are "supposed to" help school to be cancelled) We actually stayed up very late last night assuming there would be no school and were so glad to be right. My bible study leader checks in with me every week even though I am no longer able to leave for Bible Study for the last month or so, and she shared verses from the study last week in Psalm 73:23-28
It was very encouraging to me and Eric and I wanted to share it with you:
Yet I am always with you;
you hold me by my right hand.

You guide me with your counsel,
and afterward you will take me into glory.

Whom have I in heaven but you?
And earth has nothing I desire besides you.

My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever.

Those who are far from you will perish;
you destroy all who are unfaithful to you.

But as for me, it is good to be near God.
I have made the Sovereign LORD my refuge;
I will tell of all your deeds.

Sometimes it is so hard to keep our focus on God, but He is the author and perfector of our souls and the One who sustains us through trials. Please pray we keep our eyes on Jesus and for Eric to fight the latest things he is struggling with. It is really hard to see Eric go through this when there is sometimes nothing I can do to help him. I hope you are all staying safe, healthy and warm and are blessed this Christmas season.
Love,
Lori

The surgery was a success and we are home!

2009-12-01T18:09:00.002-05:00

Just a quick note to let you know that the surgery went very well. Eric used his bi-pap during the surgery which took about 1 hour including prep time once he was on the table. I was able to help get his mask on after they inserted the tube down his nose and then they let me sit right outside of the room he was in. I was praying and reading the book of John while I waited and felt at peace. I was praising God when they came out and told me it went well and I could go in. We had to stay in recovey for 4 hours so they could monitor him and irrigate his tube and we were able to head home about 5 tonight. Eric said he was hungry when he came out of surgery so we are now finally home eating some food. We will be trained on how to use the tube for the first time tomorrow. Eric is in a lot of pain in the tube area and he was given some vicodin which helped a little. Thank you for your prayers!!! We felt them and are so grateful. Please pray for pain tolerance, rest and no infections.
Thanks prayer warriors!
Love,
Lori and Eric

a quick update on surgery tomorrow

2009-11-30T23:27:00.002-05:00

Just sitting here feeding Eric his last meal he is sneaking in before midnight (Kraft Mac n' cheese and peaches). We wanted to send a quick update to let you know that we are feeling at peace about the feeding tube surgery tomorrow and plan on leaving the house at 9 am to go to St Mary's hospital to get prepped for the surgery at 11. We have consulted with the best surgeon for this through our ALS doctor and they feel confident that they can do the surgery and are aware of our wishes. Eric has been tolerating the bipap well at night and will wear it during the procedure. We have also "consulted" our Great Physician in prayer and feel his peace and protection guarding our hearts and minds. Please be in prayer for continued peace, no anxiety as Eric will not be under heavy anesthesia and have more local, no breathing difficulties and a skillful, quick surgery with a speedy recovery.
We appreciate and feel your prayers already. Thanks for the e-mails, phone calls, meals, taking the kids, help with Christmas decorations, visits, prayers and all the love we feel from you all. We are so blessed!
We will try to post as soon as we are home tomorrow to give you an update.
Love,
Lori and Eric
P.S. We had a great time staying at the Amway Grand overnight with the kids!

God gives peace in the tough times

2009-11-22T22:09:00.003-05:00

Again, we have had a week of some surprising news about Eric's ALS. 9 days ago, we got the results of our testing we did at the hospital after our clinic visit. We were getting ready to have Eric's family here for our Thanksgiving and Christmas dinner when we got the call. They told us that the ultrasound on Eric's legs came back showing no blood clots which is good. Then they went on to tell us that there is a bit of fluid in his lungs which is not good but he was given an antibiotic to treat any potential infections, but the greatest concern they had was his blood gas test results which measures the levels in his arterial blood coming away from his heart. These tests measured his CO2 levels at 52. They said that 35-45 is normal so he is retaining more CO2 than he should be. They said that he would have to wear his bipap 24/7 that weekend and then check back with them. Wow! We were about to have family over for the weekend and he had to keep his bipap that he had not been able to tolerate on all the time and not be able to communicate with anyone? We sensed the urgency in this so we asked to have Airway Oxygen come out again to help Eric tolerate the bipap. They were out that afternoon and brought another mask and adjusted the levels again and here we go. It was actually good timing to have his family, (mom, dad, sister, brother, sister in law and nieces) here to explain this to and they were able to help that weekend with sitting by Eric and suctioning when he needed it. Because of the foreign object on his face, he was producing excess saliva at least every half hour or so. I didn't think we could do it and 24/7 is just impossible, but Eric was able to get used to it and tolerate it except for at night and while eating and bathing, etc. We had a nice time with his family and I know that this is hard for them to see these changes happening, but they don't regret the time we are able to spend with eachother. Eric has actually been doing much better since implementing all of the treatments ordered. On Tuesday, the hospital bed that we have had for over a month from the VA was finally fixed so that he could sleep on the mattress. He has finally been sleeping in a bed! Praise the Lord! He has been sleeping in his wheelchair for at least six months now and his feet and calfs have been so swollen. After one day in the bed, the swelling has gone down and continues to go down. He actually tolerates the bipap all night since he has been in the bed with little to no secretions and we have been sleeping better than we have in such a long time. These new routines have been very demanding on our time and we are weighing the cost/benefit when it comes to family, friends and being used by God. The Doctors are recommending that Eric get a feeding tube put in as soon as possible, but we have been faced with the reality because of his breathing capacity at this point that doing this procedure could mean he would be sent to ICU and trached during this procedure and be put on a ventilator. We have been spending a lot of time last week getting educated on what these procedures mean and finding out what care is available to us. Eric has decided he does not wish to be on a ventilator for life support and I agreed through many tears that this would not be the way Eric would want to live his life. You can't possibly make this decision until you are faced with the reality of it. Every situation is different whether ALS or any other life threatening situation. We would never judge anyone's decision, nor use other's decisions to make our own. We feel like Eric has a lot of good life left in him and will continue to do these breathing treatments and have opted to schedule the surgery for the feeding tube for Eric on December 1st so that he can get optimal nutrition safely, simply and he will not be spending so much of his day trying to chew his meals. We are trusting God to get Eric through this surgery without a trache. He can use the bipap during the procedure and we will consult more with the Doctors to discuss our wishes and can cancel up until that date if we decide it would become too risky. Please pray with us for this surgery on December 1st! Your prayers are so powerful!
We have just shared with our kids tonight about the surgery and have talked to the kids about eternity and heaven and we all prayed for daddy to be healed and that God would continue to take care of him. We continue to pray for healing for Eric and know that our mighty God is powerful and capable of healing Eric in a moment and we also know that God is sovereign and in His will is where we want to be. We know no matter what, Eric will be delivered from ALS either here on this earth, or God will see him through every step of this disease right until He takes him home into His arms. As hard as this reality is to face, we both know that eternity in heaven is far better than anything we can experience or imagine here on this earth. The hardest thing to face is me and the kids and the loss of a daddy and husband who we love very much. The fact that those who know the Lord and have accepted him as their Savior will see Eric again is such a gift that we can treasure. We pray that Madison will accept this gift as we continue to teach her about Jesus and his sacrifice for our sins. Our purpose has not changed. We want to bring glory to God in the life that we live here on this earth. Thanks for reading as this was a long post with a heavy message, but we desire your prayers and feel so much love and support.
I know some of you will read this and say I don't know how I can help them or I need to spend time with them. God has taken care of so many of our needs and has continually brought people into our lives at the times we need them and we are so blessed. We do want to spend time with family and friends and also want to keep our time with our kids special too so the best thing to do is to send us an e-mail (lorifox@sbcglobal.net) or comment on the blog to encourage us. Our phone sometimes rings all day long and I am not always able to answer it when I am helping Eric or we are setting aside family time. Please leave a message and know that we will try to get back to you as soon as we can and we will try to reply to e-mails as much as we can too. We actually decided to take a small vacation this week over Thanksgiving break. We actually were considering taking a Disney cruise until we researched the cost and cost of flights over the holiday. Yikes! We decided that what we really need is time away with our kids and plan to stay at the Amway Grand in GR and live it up for a few days and relax.
We hope you all have a wonderful Thanksgiving and enjoy time with family and give thanks for all that we have!
Lori and Eric
“Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful.”- Colossians 3:15

Difficult changes as ALS is progressing

2009-11-12T14:01:00.003-05:00

We have been adjusting to our schedules with school and sports and life this fall. However, over the last month or so, Eric has been having problems with coughing and once and a while choking on food or excess saliva. I have been concerned about this and asked Airway Oxygen to come out to the house and check Eric's breathing. They came out last Monday and measured his forced vital capacity (FVC) and it was at 16% which is very low. His NIF measured -13. They explained that a hospital would use this measurement to see if he could be weaned off of a ventilator if he was placed on one in an emergency situation. He would need to be at least -20 to be weaned. I want to be clear that this doesn't mean he needs to go right on a ventilator at this point as he is still breathing on his own. This was hard news for us to hear and last week we had some very emotional times taking about the fact that the disease is progressing in an area we do not want to see happen. Airway gave us a lot of equipment to put into our daily routine which would be like "push-ups" for his lungs. We are now using a nebulizor with duoneb medicine and a cough assist maching twice daily and are trying to incorporate a bipap into our day and eventually throughout the night. We are doing well with the first two, but struggling with getting the bipap to be tolerable right now. We have had some serious conversations the last two weeks about a feeding tube, a trache with ventilator and even funeral arrangements at 2:00 in the morning when Eric couldn't sleep. We really haven't discussed his wishes in these areas before and as much as I didn't want to talk about it, I realized that I don't want to be faced with it if he should pass away and not know where to start. We believe this is something every couple should discuss before it is time as well as having a will and trust in place, guardians for your kids, etc. because none of us know when it will be our last day on this earth. More importantly, do you know Jesus as your Savior? It brings our whole family so much peace to know where Eric is going when he dies and that he will have a new heavenly body without ALS. We recently read about this in 2 Corinthians 5: 1-9:
Our Heavenly Dwelling
1Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. 2Meanwhile we groan, longing to be clothed with our heavenly dwelling, 3because when we are clothed, we will not be found naked. 4For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed with our heavenly dwelling, so that what is mortal may be swallowed up by life. 5Now it is God who has made us for this very purpose and has given us the Spirit as a deposit, guaranteeing what is to come. 6Therefore we are always confident and know that as long as we are at home in the body we are away from the Lord. 7We live by faith, not by sight. 8We are confident, I say, and would prefer to be away from the body and at home with the Lord. 9So we make it our goal to please him, whether we are at home in the body or away from it. 10For we must all appear before the judgment seat of Christ, that each one may receive what is due him for the things done while in the body, whether good or bad.

This is so encouraging to us and our goal is to please Him while we are here on this earth. We had already committed to speaking at Celebrate Recovery group at KCC the night we got this news and we knew we had to testify to what God has done in our lives in so many powerful ways. We have decided to change some of our priorities in our week too. Eric has quit some weekly appointments we have been trying since the risk and time away from family outweighed the potential benefits. We want to spend our time with family and friends and be obedient to God when he asks us to do something in his name. We want to keep being in his Word and continue to grow.

We have told Zach about the changes that are happening and not as much with Maddie as Zach is so much more aware of what is going on. Eric was talking to Zach before bed the other night last week and Zach prayed for God to send him a good friend. Zach is doing so well at school, he was named Student of the Month in October and also made the basketball team. We decided to have a bunch of 7th graders over last Friday for a party and they had a blast. There were 14 boys here and they ate pizza, played video games and went through the woods behind our house on a "scare walk" that Eric asked some people to help throw together. It was a fun night!
This week we went to the ALS Clinic at Mary Freebed and were there for 4 hours meeting with all of the disciplines there (ALS Dr, Respiratory, Dietician, social worker, Physical therapy, and a pulmonologist) We retested his breathing and it actually improved to 18% this week so the treatments may be helping. The doctor also said Eric may not have the capacity to take the tests to get an accurate read and may be breathing better the tests show. At the clinic we talked more about a feeding tube and how to go about putting one in since his breathing is lower than they like to do it at. We have to be prepared that they may need to put a trache in during that procedure if his breathing becomes compromised. We really need to be prepared to have more care in place in case this is done. We had an X-ray taken of Eric's lungs to be sure there is no infection or bronchial problems, an ultrasound on his legs for the extreme swelling, CO2 level and other bloodwork done the next day at St Mary's and are waiting for the results. Lots of big decisions to be made so we need your prayers.
We are having Eric's family over tomorrow to celebrate Thanksgiving and Christmas (yes, Christmas) together and they are spending the night so we are really looking forward to that. Maddie and Grandma put the tree up together tonight. I love decorating for Christmas so I am excited to have the decorations out early.
My family received some more bad news today. My Grandpa just discovered he has colon cancer and my sister's CA125 number went up again to 74 I believe. They are both also in process of deciding what to do from here. I keep thinking about our eternal perspective in a world that is full of sickness. Fix our eyes not on what is seen, but what is unseen, for what is seen is temporary and what is unseen is ETERNAL!! Thanks for reading our very long update, it has been a while again and so much has been happening in the last few weeks. Despite the tough changes, we are really still doing remarkably well. Thanks so much for your prayers!!
We love you all,
Lori and Eric

A big thank you for a wonderful day

2009-10-25T22:54:00.004-04:00

On October 17th, after months of planning and preperation by Eric's mom and many others, we went to spend the day in St Johns(Eric's hometown) for a dinner benefit and live auction at the VFW. It was a wonderful day spending time with family and old friends from Eric's childhood. We saw people we hadn't seen since our wedding 14 years ago. It really meant alot to us. We want to thank everyone who took the time to put this event together, who contributed items and their services and all those who came to the event. We are humbly overwhelmed by your love and generosity. We are so blessed and loved. There are so many people who are praying for us. This really means a lot to us when people tell us they are praying for our family. Eric's aunt and uncle got us a hotel in Owosso that night so we didn't have to drive home late which was fun for the kids and it allowed us to visit some more with his family on Sunday before we headed home.

Unfortunately, one or more of our family has been sick for the last 9 days in our house. We just can't shake it. Both of my kids are home sick today and I am feeling torn in three directions on who to take care of and to keep sickness away from Eric. This is really getting the best of me today. I was not handling it very well this morning and Eric and I both had to cry out to God to help us in our time of need. We could really use your prayers for good health. Eric's mom is coming to stay with us a few days this week to help us out, we have a meal delivered in our fridge for tonight so please don't feel like you need to come over right now if you could because we are being taken care of. Just pray for us any time you think of it this week. I know God will help us through this tough time.

God bless you!
Eric and Lori

Here is a link for a 6 minute video Lori's dad made of the event, just copy and paste the entire link below into your browser (I know there is an easier way to do this, but I can't figure it out right now)
http://animoto.com/play/D881bLRzM1lJlUtMmPh4bg?utm_campaign=share_email&utm_content=escape_link&utm_medium=email&utm_source=share_email

Sickness and Creepie Crawlies in the house

2009-10-21T21:40:00.004-04:00

Please keep our family in your prayers for good health. We all have some type of cold symptoms right now and Zach had flu like symptoms last weekend but seems to be doing better now except a cough. My biggest concern right now is Eric's cough. He has been coughing quite often for the last week or so, especially at night. He has a hard time producing a good cough and it sometimes causes him to choke which is a scary feeling for all of us. We are having Airway Oxygen come out tomorrow to analyze what equipment we should have in our house to help Eric with his coughing and breathing.
Another issue in our house lately is spiders!!! I have attached a photo of the ginormous spider we had in our bedroom yesterday. I was so proud to have caught him so we could find out what kind he is to be sure they are not poisonous. The other spiders we have seen have only been about half this size or smaller. There is no way I would have attempted to catch him without Eric in the room. He was my eyes and pep talker. I hate spiders! I think most people agree with this. I hope they will find another residence for the winter!
Today was just beautiful and refreshing with the sun shining! Zach played his last football game in Muskegon and ended the season undefeated. It will be nice to have him home after school for a bit, at least until Basketball starts!
Hope you were able to enjoy the sunshine today and your families are all staying healthy!
Lori

When God moves you on...

2009-10-15T21:40:00.004-04:00

If you would have asked Eric five years ago if we would ever leave Wellspring Church, he would have said, "You’re crazy for asking me that question. Of course not, I would never leave! I love the body of believers here. I have purpose serving in this church. I have developed some of the best friendships I've ever had in my life at this church! I enjoy working with the Pastor and the staff and leadership to accomplish God' work. How or why would we ever leave Wellspring?"

Well, the answer to that question is, "Only when God moves you on." I know that this might come as a shock to many people reading this. I like most people don't like change. But, somehow, during change God allows us to see his hand at work. We will try to explain what God has been doing in our lives since July. We have felt God telling us for a while He wants to move us to a church in our neighborhood where we moved last November . We thought, we just moved to a new area, new neighborhood, new house, new schools even a new grocery store, etc. , why would we change one of the only things we knew as well. This July, Eric and I both had a peace that God was moving us on and the scary thing was we didn’t know where or what that meant for our family. We have been at our church for 6 years and It has been a huge part of our lives and has brought us closer to God and taught us and allowed us to grow in our relationship with Christ. The church has done so much for us and we have been blessed. We have had a harder time getting to the church on time and attending functions because of the disease and living farther away. Our church has grown so much over the years, we have started to feel disconnected because we were not able to get involved like we used to due to physical limitations, distance and timing. It has been hard for Eric to know where he could serve after not being on staff any longer for two years. This has been extremely difficult for Eric as he had such a passion for others at the church and serving in his position on staff. Also, We thought it might be a good idea for Zach to get involved with a youth group over here so he could make friends in a new school and invite his friends to church and youth events in Grandville. It may not seem like we moved far, but in this busy world we live in, an extra 20-30 minutes makes a big difference to some people. We really want to reach out to our neighbors here to share Christ with them and we have been so blessed being able to do this recently. We want to use our gifts and our home to serve God and bring him glory. Everything we have belongs to Him!
We have visited many churches in this area and found a small church that meets in Maddie’s school about a block from here called Life Church and their mission is to lead others to become fully devoted followers of Christ. The Pastor lives about a mile from us and actually has an accessible home with an elevator (what are the odds of that? – that’s God). He visits us weekly and prays with us and we are discovering many ways that we can serve there even in a wheelchair. Zach has started youth group there and met a 7th grader who ended up on his football team whose family has been a blessing to us. I started my Bible Study this fall and knew no one except a woman who introduced herself and said she is from Life Church which really touched me. We started a Life group at our house and we are doing a study called Prodigal God that looks at the parable of the prodigal son in a way we have never thought of before and so far it has really been teaching us about the way of self discovery and the way of righteousness. Both are lost and far from God. We know God orchestrates these groups and both couples in our group have been touched personally by someone they know with ALS.

We have seen so many times how God is at work in our lives and how he uses others or circumstances to speak to us and recently we have been shown how God has used us to speak to others about who He is and our faith in Him that gets us through tough times. Our blog is one way that we can do this. I am always surprised to find out who has come across our blog and been uplifted in some way. Mostly people with ALS or who have a family member with ALS, but recently a woman I know ran into me at a grocery store on the other end of town I just happened to stop at the same time she was there. She was going to have brain surgery from a tumor they had found that week and said she thought of our family and what we were going through when she heard that and then here I was! That is God! She asked me how we did it and I told her it was from the Lord and his grace. We always have opportunity to be a testimony to Him and this brings Him glory!

I know us leaving our old church is really hard for some people to understand, but we really feel that God has moved us on. It has been very difficult for us to leave and trust God and we will miss worshipping with many of you as you have been so supportive to us over the years. In my Bible Study lecture last week I heard the leader say “Following God means trusting his leading in other people’s lives. We need to encourage others to follow Jesus no matter what that looks like or means. “ This was in reference to John Chapter 1 where Jesus came as John the Baptist prophesied and John the Baptist’s disciples left him to follow Jesus. John stayed right where he was doing what God wanted him to do. He didn’t follow them because that wasn’t God’s plan for him. I’m sure he was sad that the people he had been spending so much time with left him but he trusted God’s leading in their lives. Jesus asked the disciples what they wanted and then he said come spend the day with me. God wants us to trust Him and obey Him. I personally would like an itinerary of what that looks like or means as I am a planner and like to know what my day looks like. I have learned as a caregiver that my day never lines up with what I think it should be and my to-do list is never done. This week in Bible Study, the teaching leader said “God wants us to hand over our planner and He wants to give us a notebook to fill with His words and His plans”. Wow, that was a tough one for me to hear but I know that’s what He wants from me.

Fall has been very busy for us with Zach in Football (#34 for Grandville 78ers). Their team is 5-0. Maddie is playing Soccer (#5 for AYSO Bumblebees) and scored her first goal yesterday. We had the ALS Walk last week and God gave us the most beautiful morning after days of freezing cold and rain. It was a glorious day and we were so blessed to have almost 100 people come out to walk with our team. Thank you to Texas Roadhouse and all the other vendors who donated our lunch. The walk was downtown Grand Rapids this year and we walked right along the river and saw many of the Art Prize exhibits which were still down there. My dear cousins from Tennessee (Lauren and Avery are pictured above with Zach) actually drove up here for the walk and stayed with us for a few days which was so much fun! We were blessed and helped the ALS Association raise money and awareness for ALS and really appreciate everyone who walked or donated to the walk.

Today, I was able to go to an ALSA sponsored caregiver’s conference with my friend Erin whose husband also has ALS and we met some wonderful people and heard two wonderful speakers, Cecil Murphy and Shelly Beach speak about caregivers challenges and encourage us to keep doing what we do for our loved ones. It was a wonderful conference and we were fed lunch donated by Fazoli’s and pampered with some great door prizes as well. I was so excited to win a night for our family to stay at Great Wolf Lodge in Traverse City and water park passes but not half as excited as my kids were!!!
Other great news we got today is that my sister’s CA125 level has gone down to 25! Those of you who follow her blog can access her link on the right of our blog. We are so excited to hear this wonderful news as her battle with Cancer has been so tough but they can clearly see God’s hand at work in their lives. Praise God!!!

Lastly, we love to hear your comments either via email or by clicking the comment tab at the bottom of each entry. Many of you have said you have tried to post and it gets erased so you give up and I know that is discouraging so here is a quick “comments 101”
Click on comments and type your comment in the box, before you hit post comment, you either need to sign in (create a Google account if you don’t have a sign-in) or if you don’t want to do this, click anonymous before you post. If you want us to know who wrote the comment, just sign your name in the comment box. The comments are then emailed to us and then we publish them as soon as we get them. We are so encouraged by your comments. It’s kind of like getting mail, the good kind, not bills!

Keep following Jesus!!
Lori and Eric Fox

Thank you for your continued prayers, as the weather gets colder we will be home quite often and would love to visit with you. Our door is always open!

A Gimpse of God at Work

2009-09-23T11:09:00.005-04:00

I am always amazed when I look back and see God's hand at work. Here's a story that is sure to build your faith.

THE BIG PICTURE OF GOD AT WORK

This is a story that I have seen unfold over the course of three years, but one that comes around full circle. It starts out with me, Eric, when I was on staff at Wellspring Church. One day I took a phone call for the secretary right at closing time. On the other end of the line was this lady, Cheryl, who was looking for churches to check out in the area. As she and her husband, Steve, were having difficulties in their marriage and problems in their family, she thought it was time to get back to church. I shared with Cheryl that she would need to try Wellspring for a while to see if it would be a good fit for her and her family. I told her of all the different ministries and areas that they could get plugged in. After attending for three weeks Steve accepted Jesus Christ as his savior. His life drastically changed.

Steve was on fire for the Lord, wanting to get involved and help out wherever he could. It didn't take long before Cheryl and he started doing short term mission work in Mexico and also on the streets of Chicago. After a year and half of this kind of outreach, God spoke loudly to Steve that there was a need right in the streets of Grand Rapids.

Steve took an early retirement at GM to get involved on the streets of Grand Rapids and ministering to the homeless. So in January of 2009 they began. Cheryl and he and a few other couples made some soup and coffee and collected blankets, coats and gloves and went downtown and passed out the supplies to the homeless who live on the streets and under the bridges.

One of the homeless men that they first met wouldn't even talk to them. His name was Scott. They kept going back week after week giving him supplies and praying over him. Soon Scott came out from the bridge having enough energy to walk downtown to the church on Division Ave. Soon after coming to the church week after week, Scott was led by Steve and accepted Jesus Christ as his Savior. Not long after this I came downtown with my family to help serve.

After meeting Scott and praying with him several times I too struck up a friendship and bond. As it turned out Scott was slowly dying of cancer living under the bridges. Not long after he was diagnosed with Cancer, the Guiding Light Mission was able to get him some medical assistance and treatment. It was touch and go for a while there as all of us who served at the inner city church prayed for Scott's health. Finally, Scott was given a clean bill of health by the doctors. And now he is on his own and has his own apartment. Today, when you see Steve and Scott talking on the street you see a miracle of love and dignified respect for one another.

In my conversation with Scott today he would tell you that he was content to lay under the bridge and die. But, because of the consistency of a few good men bringing him food and supplies, and praying over him, he got a sense that somebody cared for him.

Now this isn't the full circle, there is more to the story. Steve and the rest of the servants working in the inner city church had been praying for more supplies. There has been a large need been for clothes and shoes that fit bigger men, more XL and XXL type clothes. After praying for three weeks the prayers were soon answered. I had met a man two years earlier while getting a treatment for Lou Gehrig's disease. His name is CB. I had asked him to drive me downtown to an appointment that I had on Saturday. CB picked me up at my house, loaded me into the van and off we went. Little did he know that my appointment was to serve the homeless.When we got there CB met Steve they realized that they knew each other from the GM plant where they both had worked. CB ended up that day walking the streets with Steve talking with the homeless and praying with many hurting people.

Now here's the answer to the prayers for the clothes.

Because the plant at GM had closed CB was still there helping to dismantle shelving units and clean up all the locker rooms. Normally GM has a strict policy to throw out any items in the lost and found that have not been claimed. They do not donate items in order to not show favoritism to one group over another. But because CB was so compelled and moved at the incredible need of the homeless right in GM's back yard, he asked his supervisors if it would be all right to bag up all the hundreds of shoes, boots and articles of clothing that had been left behind and take it all to the mission. Because of his relationship with his boss they agreed. CB called me and asked me if Steve and the inner city mission would have a need for these items.

CB had no idea that we had been praying for clothing.

Five truckloads later, the mission now has more than enough XL and XXL clothing for the upcoming winter season.And in one of the bags of clothing Steve found a large amount of money from the guys and gals at GM that had taken up an offering. Arn't God's people so amazing!

When we are faithful in the little things like answering a phone call, or serving in the mission and praying for someone in need, God is faithful and just to answer our prayers.

Feeling much better

2009-09-21T22:01:00.002-04:00

Just a quick update to let you know that Eric had a pretty uncomfotable week last week until Saturday night as the pain seemed to subside and stop. He has been able to stop taking the vicadin on Sunday and we feel that the stones have passed. We were able to strain and collect small crystal like pieces that we can have tested so we can hopefully prevent this from happening again. Thank you for all your prayers, calls, meals and visits. Have a blessed week!
Lori and Eric

The ALS Walk is less than 3 weeks away! Please let us know if you are able to come join us on October 10th downtown to walk for ALSA.

A long night in the ER

2009-09-14T19:38:00.003-04:00

Last night at about 2:30am, Eric woke up with extreme pain in his abnomen so I got him up. We thought it might be gas pain so we waited up a while with no relief. I decided to give him a vicadin to see if the pain would subside enough to sleep and he threw up a few minutes later. I then checked his temp which read 101.6 so I started to worry more. We called my aunt who is a nurse at about 3:30 and decided to wait another hour to see if the pain would go away which it didn't so I called my parents to come stay with the kids and we were off to the ER at around 5 this morning. When we arrived, it was very slow so I thought we would get fast service, however, there was a big problem getting a vein to run an IV in Eric. We had many nurses and Dr's attempt to poke him numerous times with no luck. They wanted to rule out appendicitis and wanted him to drink a contrast to do a catscan on his abnomen. He instantly threw up the first few sips of the drink as they were still trying to poke him. They decided to try his artery in his groin at this point which failed miserably too. They even brought in an ultrasound to try to see the vein and ended up going to the other side to try again with a very large IV needle. After a lot of pain and a lot of blood and many tears shed and prayers said by me, they finally got his IV port in. They tested his blood and urine and we tried to prep him again for the Catscan. He received pain and naseau medication and was finally brought to the catscan at about 9:30 this morning. They would not let me go with him which was our second bad experience. No one passed on his health status with ALS so they asked him to transfer to the table when he got there. He could hardly talk because he was tired, heavily medicated and laying flat on his back. When they finally understood him, a very thin woman and an elderly man transfered him to the catscan table. All the while no one explained to us the procedure except that it would only take 5 minutes. When they finally got Eric on the table, they put a bunch of pillows under Eric's head which restricted his breathing. He tried to tell them, but they couldn't understand him. They finally figured it out when he kept staring at the pillows and shook his head no. The older gentleman said not to worry that he couldn't breathe well because he was on oxygen, what they didn't understand is Eric's forced vital capacity is very low which I explained to the prior doctors in our room. They taped Eric's arms down and he felt like he was in a straight jacket and fed him through a tube. A while later, they appeared by his feet and pulled out the blanket from his groin and applied the dye and did the procedure with no explanation of what they were doing. Eric arrived back at the room by 10 and was groggy and clearly not happy but too tired to talk. Eric's parents and my parents were at the hospital by then waiting with me. They came back with the results later and said "the good news is you don't need surgery, the bad news is you have a kidney stone and will need to pass that." They gave us some prescriptions, paperwork and pulled his IV and sent us home by about noon. Eric's mom is staying here with us a few days and my parents went to get the groceries I have been meaning to get the last few days and we slept until 6 tonight. Eric is still in pain and I need to go get his RX. Please pray that he can be comfortable and that it will pass quickly and the pain can be controlled.
We have been meaning to update the blog this week after he got back from his trip which was amazing which Eric and Zach will update you on soon. It has been a very difficult week for us adjusting with school and schedules and emotionally.
As much as I enjoy the break from taking care of Eric, it is hard to go back to the routine after I have a break. When I do it every day, it feels like our "normal" and when I don't like when we were in Hawaii with no schedule or responsibilities, I realize how hard it really is when we go back to our routine and I get almost irritable instead of full of grace. We both have been having a very hard time coping with this disease this week and have shed a lot of tears. Please keep us in your prayers as you have been. My sister and her family have been struggling this week also with her cancer and chemo treatments and are facing some very big decisions so that makes it hard for our whole family. Sometimes I feel like this world is so broken with sickness, sin, broken marriages, financial strife etc, I just want Christ to return and take us all home to glory! Our life verse comes to mind especially today:
2 Corinthians 4:16-18
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

May the Lord watch over us all this week and provide for all of our needs.
In Him,
Lori and Eric

Father Son Road Trip 2009

2009-09-08T10:52:00.003-04:00

In my quest to visit all fifty states here in America I have been planning a trip with my son Zach to go see Mt. Rushmore for the last few months. My friend Doug and his son Max told me that they have always wanted to see it as well. On the map South Dakota does not look that far away. We planed our route to include going into Wyoming, Montana and up into North Dakota on the way back home so that I could knock off four more states. I have to admit it was farther than I had anticipated. Thank you Doug for being a trooper and driving the entire way! It was an amazing trip. Not only to spend time with a good friend but spending time with my son and hanging out with just us guys helped build our spirits up. Mt. Rushmore was a spectacal to see in person. I was amazed at the history and determination of one man to have the vision to build it. There were no deaths during the building process while using dynomite and rope swings and hanging off the side of the Mt.I didn't realize that there was such a controversy with one of the faces being put on the monument. Can you guess which one? It was the last one, Teddy Roosevelt. The reason is he had only died six years before the construction and many conservatives thought that it was too soon. But when you look at what he had accomplished for the countries' development there was no doubt they had picked the right person. We had no major issues and adapted quite well... unless you count getting lost in Montana. Let me explain; the GPS said to turn onto a highway that looked more like a two lane paved road. Soon it turned into a gravel rock road and we continued for several miles. Did I tell you there is nothing but huge fields in Montana. After a half hour or so we finnaly came upon a large farm house and we stopped and talked to a man with a cowboy hat who was sitting on his golf cart with his dog. We asked him if the directions to highway 20 continued on this path and if that would lead us to Highway 85 heading north into North Dakota? He responded with a wierd disbeliefed look on his face and said, "Yep." I can't imagine what was going through his mind. It was a low profile mini-van rolling down the two track farming road that you drive tractors on, trying to get onto a highway. It was so bad that at one point we came across cows on the road where there were no fences to keep them in, so they roamed back and forth on either side. Thank goodness we bought an atlas in South Dakota and were able to find our way to highway 85. Even though everything was spread out so far there was many beautiful scenes to take in. We saw many dear and what looked like antelope along the way. I had always wanted to take a ferry boat across Lake Michigan and rememebered that there where two ports on the Wisconsin side. We got on line and called the Michigan ferry boat lake express. And wouldnt you know it they only had one spot left. So we took it. We thought that Chicago traffic and construction plus being a holiday weekend it might take us eight hours to get home from Milwaukie but by ferry it only took three hours saving us a lot of gas as well. I was amazed at how quite and smooth the jet express boat was. Doug and I dozed off for some well needed rest while Max and Zach wandered around the ship taking pictures. We played a practical joke on Lori when we got home asking her to get on map quest to find an alternate route around Chicago and then after a while as we were pulling into the drive way, told her to look out the window. It was so good to be home.

Father-Son Road Trip!

2009-09-04T12:19:00.001-04:00

Father-Son Road Trip!

Last night Eric, Zach, Doug and Max Campbell left on a road trip to see Mount Rushmore in South Dakota. They left about 8 last night and stopped in Iowa City, then will head the rest of the way today. They plan to go through four states Eric has never been to before on this trip leaving only 5 states that Eric hasn't visited in his life. They have been talking about taking this trip for a long time and planned it about a month ago. The weather looks beautiful this weekend and I have heard that it is an amazingly beautiful trip. This is a trip that didn't interest me much driving so far to see past presidents on a mountain? My former boss yesterday said "it's about the Journey!" This is so true about this trip and about life! Maddie and I are home having a girl weekend and we slept in til 11 today and are hanging out with Kelly and her girls who spent the night. We ate junk food, watched a movie, did Kareoke, had a dress-up nerf gun fight and had fun laughing at eachother. I hope to get a lot done while Eric is gone and also do some relaxing and fun things with Maddie before school starts next Tuesday. Keep Eric, Zach, Doug and Max in your prayers for a safe trip and good memories created this weekend. They will return home on Monday. Hopefully we will have some great pictures to post soon!
Have a wonderful weekend!
Lori

Please join us in the Walk to D'feat ALS on October 10th!

2009-09-02T13:33:00.004-04:00

Dear friends and family,

It’s that time again, dust off your shoes and come out and support our great cause, “THE WALK TO D’FEAT ALS.” We’d like to thank those of you who have supported or participated in previous walks on our Team Fox Trotters to benefit The ALS Association. If you haven’t participated in the past, we’d love for you to join our team this year! SAVE THE DATE: This year’s walk is about six weeks away on Saturday, October 10, 2009. Your support and presence really gives me the hope and determination to fight this disease.

Many people might wonder what the money raised from this event will go to, how will it help the cause. Due to my involvement and relationship built with the ALS association I can assure you that the money is well spent. Some of the ways in which the money directly benefits patients includes: holding monthly support groups on how to deal with this disease, in home visits from nurses, respite care (giving care givers a break), utilization of the loan closet, being able to borrow equipment when a patient can’t afford it on their limited Medicare budget, and of course a large amount of it goes to our national research effort to find a cure for this terrible disease. All of these resources have impacted my life in one way or another. With over 38,000 people suffering with this disease there is a real need for support.

Recently, researchers funded by The ALS Association identified a gene that causes familial ALS. This is HUGE! This finding will be helpful in further research, even for those of us with non-familial ALS.

Here in West Michigan, our local chapter uses three major fundraisers to raise the money. The biggest is the annual Walk to Defeat ALSTM. It brings in more than half of the funds needed by our local chapter to operate.

In 2007, thanks to your help, we raised over $17,000. Last year we all brought in over $7,000. This year we are hoping to have over a 150 people walk on our team Fox Trotters to raise $15,000!

We hope that you can join Team Fox Trotters. We will be wearing the blue Fox Trotter T-shirts again. If you plan on walking or need to order a T-shirt, please contact Lori at lorifox@sbcglobal.net or (616) 532-4752 and give your size and who will be walking. The cost of the shirt is $10.00.

Our Captains this year are Dan & Tanya Bolkema. They will be responsible for encouraging and answering questions about the walk, on-line donations, corporate sponsorship, and any other questions you might have. You can contact them at dabbolkema@sbcglobal.net 616-813-2022 or 616-644-1811.

For more information about the walk, visit www.walktodefeatals.org or call 616-459-1900. If you are unable to walk this year but would like to make a donation to our team, you can go to the link at the top right of our blog to find our personal walk page.

All our love,

Eric and Lori Fox

When a storm hits...and your left with the pieces

2009-08-17T22:25:00.000-04:00

Thinking about why we Americans have a hard time dealing with death, grief, despair, disappointment and sadness - we try to avoid it at all costs. We even put on a facade like everything is OK. I give it this analogy:
We're strolling along in life. Life is good. Family, the job, relationships, health -all is good and THEN, Katrina stikes!!! What do we do now? The pieces of life are scattered about and our path is forever changed. Relationships we once had are not there anymore. Why is that? I mean, don't get me wrong we are still cordial to one another but those relationships, that intimacy that we once shared has been damaged.

Many relationships are built around hobbies, work, going to the same church, interests, clubs, sporting events etc and not fully on eternal things. When those things are stripped away as in my case it reveals what the relationships were really built on. Time has proven to me that many people(myself included prior to ALS) are too busy with their hobbies, work, interests, sporting events, church activities which are all really good things and important but from somebody who is handicapped and not able to do those things anymore, you feel left out and abandoned and even forgotten about at times.

Some people have a hard time knowing what to do or say because they have a hard time dealing with despair, disapointment, sadness, grief, and death. A friend of mine once said that maybe its like they are mourning the loss of you, even though you have not died. So they are keeping you at a distance so they won't hurt even more when you actually do pass. How sad.

Maybe some people feel like I am not approachable now. I want to appologize if I have every made anyone feel that way, I hope people dont take it personally. There are a lot of adjustments that come now with living with a terminal disease. If you're reading this and we shared life together, know that I valued that time that our paths crossed. Its ok to talk about "the disease" or even "death". I know it is not a favorite subject of many people, but when I think about death and dying I think about spending eternity with God my father and Jesus in their infinite glory and holiness. There is no sadness or grief in heaven. There is no despair or anxiety, everything is perfect and as God planned.

When I leave this earth, my hope is that I have made a lasting mark on society, that people would remember me for the legacy that I have left behind. That people would say "yeah that Eric Fox guy, he sure loved Jesus. He was the real deal." That if our paths did cross, that you would have pleasant memories of our time together. But until that time God has me busy doing his good work, sharing my testimony and sharing the good news with all that will listen. I will be doing that until I take my last breath on this earth. "I want to run the race in such a way as to win the prize for which Jesus Christ has called me heavenwardly" so that when I get to the end and see Jesus face to face he will say, "Well done, my good and faithful servant."

Thanks for listening to me banter on. Whatever reason God had me write this hopefully it helps you understand how I'm feeling.

Eric

A proud little girl! Look Dad... two wheels!

2009-08-12T21:29:00.005-04:00

We have not had much time to ride bikes in the last two years and Maddie was riding with her friends down the street and she realized she was the only girl with training wheels and she could not keep up with the other girls. This made her sad and it kind of broke my heart too. We have never worked with her to learn to ride her bike without training wheels. I started looking for a decent bike for her and found a good used Schwinn bike for her on Tuesday. Then I thought how do I teach her how to ride this? Eric taught Zach to ride his two wheeler when we were camping. I remember because he rode right off the road right into a tree! We started working on it last night in the grass and with me running beside her on the sidewalk way out of breath! She wanted to try it again this afternoon and then just a little while ago she wanted to try again. We padded up and went on the street. Eric said to hold the back of her seat so I tried that and let her go and off she went! She was smiling from ear to ear! I was so proud of her. It was a monumental moment for her! We went to get dad and Zach and the cameras which were all dead batteries! I was able to get a two second video before my batteries died! She was so excited to show her daddy she could ride her bike all by herself! It was a good day!
We have been doing pretty well lately. We will try to update soon!
SAVE THE DATE.... ALS Walk on Saturday October 10th. More info to follow! Hope you can join team Fox Trotters this year! Have a good week!
Lori

Letters by Zach Fox

2009-08-07T12:14:00.003-04:00

Below are two letters written by my son, the first one is when he was in fifth grade and the second is in sixth grade, last year.

We are so proud of Zach, his writting is very deep for a twelve year old. As you can imagine he went through a lot of emotions, as you can tell from his writtings.

Fear of Death
06/04/08

Imgine a strong, faithful man with a loving family. Now picture that same man with a fatal disease called ALS who can't use his arms or legs practically at all. This isn't just a story, it's the truth. Can you guess who this man is? Yes, he's my dad.

It all started when my dad couldn't button his shirt one Sunday morning. Now he still has a family, but needs them every minute of the day to help him with everyday things like dressing him, shaving him, giving him showers, feeding him and helping him get up from sitting down. I've had some doubts that were all answered, but one still sticks tightly in my head and heart. Is my dad going to die? It keeps bouncing in my head and I can't help but cry untill I can't cry any more. I'm so confused, but yet it's so clear that it's a life or death situation.

I almost have no way to help him except pray and hope God wil cure my dad and thousands of others. Right now, there is hope that they will find a cure because I don't want to NOT have a daddy. Losing my dad would be like getting shot in the gut. I would still be alive, but I would wish I wasn't. For me, I would do anything, anything, anything to keep my dad alive, and see his joyful sunshine on his face. Let's anticipate that they will find a cure for ALS for thousands of others who have ALS as well.

Zach Fox
5th grade

Be Happy
06/03/09

Many people don't know that our family has been going through tough times since my dad has ALS. I think it's important to know that poeple can still be happy no matter how tough times are. For instance, my dad always has a good attitude while dealing with his disease. Another reason is my mom is still really helpful to our whole family and others. Also, my sister is so happy even though she is so young to have her own dad get a terrible, breath taking disease called ALS. Finnally, although I have to live with the fact that my dad could die in a couple of years it has tuaght me the responsibility to be the man of the house and to treasure life.

My dad still has a positive attitude while living with ALS. For example, I asked my dad a question, "How do you not get down at not being able to do the things you used to do?" He answered, "I focus on the things I can do, that God has given me the ability to encourage others. My faith helps sustain me. Somedays are better than others." Also my dad's favorite quotes are, "Don't worry, be happy!" and "Its all good!" These sayings help us laugh and forget what we were currently sad about.

Another reason is, even though there are 8,000 new cases of ALS patients per year in the U.S. and 30,000 present cases today, people can still choose to live their life for the better and be happy like we have done or just wait untill it's time to die. Hopefully most all of us, even the people who don't have a disease will choose to be happy.

My mom is really helpful to our family because although her husband has a terminal disease, she still works hard to run our family. For example, I asked my mom this question, "How are you so mentally strong even though you are going through this tough time?" She answered, "God gives me the strength to get through the tough times. People are praying for our family. My comitment to dad when we got married is a vow that I wont break." Also, she loves him very much. I can't believe that my mom is so happy and strong even though the unthinkable happened. The things she does for us is way more than any mom should do. Now my mom does tons of things for our family. She cooks delicious meals that make my mouth water. She takes care of my dad's daily needs because he is unable to himself. She stays strong by her amazing faith in God who gives her strength to live each day. She helps me with my homework when I give up because I think there is no way I could finish the humungus stack in front of me. She handles situations way better that I could ever think of even trying to do. She is my super mom.

It's hard to believe that my sister can be so happy even though our whole family is going through tough times. For example, my sister loves to make up new games. Like one day she walked up to me and excitedly said, "Hey Zach, I have a good idea for a game we can play." "What is it?" I asked back. Her smile was growing every second. "You pull me across the floor on a blanket and see how fast I can go," she replied. "I do what?" I asked enthusiastically. She repeated what she said again and I just did what she said. She laughed and screamed with glee when I shot her across the living room's wooden floor. I'll never forget that day when she made me forget about my dad's illness and have fun like we used to. Also, my sister is such a good encourager. My sister makes up fun games and plays them with the whole family. My sister is very sincere and loving when someone is really sad or down. My sister makes us laugh when we could be crying. My sister sometimes gets on all of our last straws, but most of all, my sister is my sister and that means the whole world to me. Yes, I love my sister and I wouldn't rather have any other sister in the whole world but her because she brings me up when I'm down about something. She helps me be happy through the tough times.

Even though its hard to live with the fact that my dad has ALS , I have gained a lot of responsibility. I was eleven my dad hollered, "Zach." He was upstairs watching TV and needed help. I was down stairs in the basment playing with legos and watching TV at the same time. "Coming!" I shouted back. I bolted upstairs to see what my dad needed. "Hey, can you get me a glass of water?" my dad asked. He of course looked desperate for a drink of water. "Sure," I said getting him a glass of water. "Thanks Zach" my dad replied the second after he took a sip from the clear glass cup. "Your welcome!" I exclaimed. I always feel realy good about myself when I do something nice for my dad.

Recently I surveyed the class if they would cry if they found out their dad had a fatal disease and was given 2-5 years to live. One hundred percent of the class said they would cry, of course. I cried when I found out, I cried alot. But God wants me to rejoice in it because I know where he's going and I'll be there to meet him someday. I realize that when I am happy, I feel like I can enjoy life more. Clearly people can still be happy no matter how tough times are because if our whole family can still be happy through our tough times, others can choose to be happy as well. It's your choice to be happy or sad or mad, make it a good one.

Zach Fox
sixth grade

Revelation Song - one of our new favorites!

2009-07-29T17:33:00.008-04:00

We have been hearing a great new song lately sung by Kari Jobe (also Phillips Craig and Dean.) It is such a powerful song! We wanted to share it with you in this video some friends told us about. We have to warn you that there are many scenes from the Passion of the Christ movie that has some very graphic depictions of Christ's sufferings. As with any music or video, you will have to go to the top jukebox playlist and pause the music already playing before you click on the video below.
Have a blessed week! Our kids are in Traverse City camping with my brother and his family until Saturday so Eric and I are enjoying a quiet house together. We hope some of you will be able to join us tonight at Carrabba's in Grandville at 7pm for the MDA fundraiser dinner. Nationwide Carrabba's are doing this so you can go to any Carrabba's.

Skype

2009-07-27T17:12:00.002-04:00

We are now on Skype and if anyone would like to talk to us via the video connection, shoot us an e-mail at info@ericfox.us or lorifox@sbcglobal.net and we'll make sure the computer is on.

If you don't have Skype, visit www.skype.com for more info. It's free and amazing to connect with this technology!

You can find us on Skype at:
Skype name: eric.fox.1988
Or search Eric Fox in Grandville, MI

Continuing the Fight...

2009-07-27T13:47:00.005-04:00

No matter what in life, there are no guarantees. In God's word it does not say if you're a beliver or a follower of Christ that life will be smooth and easy. Rather, you can be assured that because we live in a broken, fallen world there will be attacks of many kinds by the enemy (Satan). Now I know that to many of you reading this, this might be a foreign concept to you... Satan. Maybe you don't even believe that there's a real place called Hell. I am reminded in God's word that they are both accurate depictions of an actual place and spirit. I think it's difficult for most of us to fathom that they are real because we don't see them and can't touch them. But I am convinced they exist.

I am in the middle of a battle that the enemy wants to control and take me out. Yesterday I heard a sermon that the pastor talked about how Satan is like a roaring lion seeking whom he may devour. He talked about how lions look for the weak, the sickly, even those who are not aware they are being stalked (they are complacent or over confident). I think that this is a good lesson for all of us to stay alert by staying in prayer, continuing to be in fellowship with other followers of Christ, to be in the Word, remembering on a daily basis to guard ourselves and put on the full armor of God.

This weekend a friend of mine picked Zach and I up and took us downtown to the inner city church mission where we help out a ministry caring for the homeless and anyone hurting on the streets of Grand Rapids. One thing I'm amazed at is how no two weeks are ever the same. God works in so many incredible ways. I realized after talking to about 4 or 5 people that there is no difference between me and them. They have hurts that are similiar to my hurts. They feel lonely at times, I feel lonely at times. They feel like they can't go on because of the struggles they face, and I feel the same way. There is a difference though. I have something that they need. And God reminded me of this - they need Jesus. With Christ living inside of me I have the hope and peace that only He gives. So, I decided that I need to encourage these people of this. They were very open and wanted me to pray with them.

I feel that a lot of the people I meet have all sorts of religion. They know the bible, they know scriptures, but for many of them they are misguided because they continue in their sin of alchohol abuse, drug abuse, etc. that the enemy has a stronghold over them with in those areas. They need to release those chains that have been binding them up for so long. They need to make a decision to have the living Saviour come dwell in their heart. There's more to having just head knowledge of Him and the scriptures. Christ wants a personal, intimate relationship with each one of us.

For example, when I think of my best friends, I think of what is it that has made them become my best friends... it is because we have spent time together developing that relationship. We talk, we've been though good times and bad times, we give each other advice, we bounce ideas around, we make memories together. That is what Christ wants from us - to develop and intimate relationship with Him. He does not want us to go through the motions just sayin we know "of" Him. He desires a real and intimate friendship.

On Saturday, I noticed one gal that was in line getting soup and supplies. She was not happy and very impatient. By the comments she was making, I could tell that she was having a hard time and was struggling with something. I went outside to invite more people in to the church. A little while later, she came outside and my friend C.B. and I stuck up a converation with her. There was something noticably different from the time I had first seen her in the line and now. We talked with her and encouraged her. She even let us pray with her. Later on, we gathered as a group of workers to discuss what we had seen and experienced that day. We prayed that the seeds that God planted that day would take root and we would see much fruit from the efforts. One of the workers shared that she had the priviledge and honor of leading a homeless woman in the prayer of salvation. It was the same woman that C.B. and I had spoken with. This is an example of God working through a handful of people that are faithful and obedient to His will. My prayer is that Laquita would continue to develop that intimate relationship with Jesus Christ. Please pray for her and the many others that are hurting all over.

I wanted to also say how proud I am of my son Zach. When I asked him if he wanted to go downtown, he gave me a resounding "Oh yeah!" I amazed at my son, being 12 years old, desiring to be used by God in this way. Walking the streets, talking with homeless people, encouraging them of the hope that we have in Jesus Christ. What father would not be proud of their son or daughter who had this same desire. Zach is a big help to the entire group and is learing a lot about people and circumstance in this life. He relealizes that there are no guarantees in this world we live in and that we should not take for granted all that we have by Gods' grace. We are truly blessed and Zach and I have talked about that on my occasions. Zach has seen God work in extraordinary ways the last few years, as we all have. I cannot be prouder of him than I am right now. He is such a good and wonderful kid.

This weekend we had an unexpected guest call and come over... my brother and his family. It was a wonderful visit. We had such a great time with him, Erica, Kaitlyn, and Emma. We went and saw a movie (G-Force) and the kids liked it. I fell asleep... that tells you how good it was from an adult stand point. I would recommend waiting until it comes out on video (just my personal opinion). Afterwards we grilled hamburgers and ate out and even made a bonfire cooking smores and doughboys. Unfortunately, I paid for this later on as I took in too much smoke. But I wanted to enjoy the time together with my brother and his family. So needless to say, it was a rough night of sleeping for me that night. I did a lot of coughing and was up quite a bit during the night which meant Lori didn't sleep much either. All in all, it was well worth it though.

I ran into an old friend of mine that two and a half years ago had been diagnosed with Parkinson's Disease. I had not seen him since then and was amazed to see that God had healed him of his symptoms. Praise God! I was encouraged by his attitude and for his encouragement towards me. He reminded me of the verse that was instrumental in him being healed. He said that this verse is his life verse:

Matthew 17:20
And Jesus said unto them, Because of your unbelief: for verily I say unto you, If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you.

I'm reminded that our faith is a powerful tool! I trust in the Lord for my healilng during this battle of ALS. I continue to fight the good fight and press on towards the goal. Perserverence is teaching me to lean on the Lord even more each and every day. God continues to chisel away the rough edges, everything that is not of Him!

Thank you for those of you who continually pray on our behalf. May the Lord continue to bless you and keep you.

Your brother in Christ,
Eric

Family Song

2009-07-16T14:59:00.007-04:00

A couple weeks ago, Lori's cousins and Aunt were here visiting and we put together this song, which is now uploaded to U-tube. Hope you like it.

Reminded that God is always at work even when we stray

2009-07-13T22:57:00.003-04:00

We wanted to share with all of you something that God has helped us come to understand this week. We have been feeling very down, lonely and even depressed over the last three weeks and that is right where Satan wanted us to be. It is so easy to become consumed with our human emotions and the way this disease continues to change our lives. We have not been seeking God's help daily through our struggles. This week, God has been speaking to us in so many ways and reminded us who He is and how much He cares for us. God has been doing this through people, through his Word, sermons, a book on tape, through answered prayers, things that are not coincidences but rather God at work in our lives.
Today, a good friend with ALS, Jana Woods, has passed away from this horrible disease. A few months back, she was in our home laughing with us. We had heard she was admitted to Hospice not long ago and had every intention to go visit her there thinking we had time, but we got caught up in our own busyness and wallowing in our self pity that we didn't listen to God and our hearts and make the time. We are not saying this to make you all think you need to come visit us this week or feel bad. We know that God lays it on peoples hearts when he knows that we need an encouraging word from them and He works through his people to show His love. We used to feel guilty for not helping everyone that was sick in our church, but realized that we are only responsible to go when He pricks our hearts or puts them on our mind. We are all called to use the gifts God has given us to further His kingdom. We are reminded about the brevity of life when someone dies and we don't know when we will take our last breath. We are reminded that it is so important to spend time with the ones we love and to share the gift of salvation that we have been given with others. Every day is a gift! We get so caught up in things that really don't matter for eternity. The enemy is so crafty in keeping us distracted with things of this world and not keeping our eyes fixed on Jesus. We are so thankful that God never leaves us, when we are feeling like we are alone, it is us that have strayed away.
We heard a sermon from John 5 recently that talked about the man who was crippled for 38 years. He was trying to figure out a way to get into the healing pool when others kept going before him and he had no way to get in. Jesus approached him asking if he wanted to be well and told him to pick up his mat and be healed. He obeyed and was healed. His life began at the point of his faith. He had work to do! We were reminded of the work that God wants us to do. At the point of our salvation, we are healed and cleansed of our sin and God commands us to sin no longer and to live for Him. We are praying for physical healing and want it so badly that we lose focus on eternity in Heaven with Jesus and our purpose while we are here on this earth. He wants us to live a life free from sin and sadness. He wants to offer us hope and a future! If we are caught up in finding a cure or wanting to be healed, it's hard to trust God as my disease progresses. We cannot live the life God has for us without Him.

We have been praying for a sports camp for Zach to attend this summer in a christian environment and God led us to Fellowship of Christian Athletes camp last Friday and we drove him to camp today! If you are able to send Zach an encouraging note while he is at camp, the instructions are below. The letter should be sent out by Tuesday or Wed since he will be coming home on Friday. We think it would really lift his spirits to receive letters this week since he doesn't know anyone there except the couple who told us about the camp that help coach. We know God will watch over him and bless him this week! Keep Zach in your prayers too!
If you are planning to send a letter to your camper,
address the letter to the individual, Fellowship of
Christian Athletes Camp, Dining and Hospitality Service,
Albion College, 611 East Porter Street, Albion, MI 49224.

Maddie is doing a Soccer camp at a Grandville church too and she packed her bag to stay overnight thinking she was going away for the week too like her big brother! Pray that God will speak to her precious heart this week.

Sorry this is so incredibly long, thanks for listening, praying and loving us!
Your brother and sister in Christ,
Eric and Lori

Carrabba's Nationwide fundraiser to aid MDA in the fight for ALS on July 30th 5pm to close

2009-07-13T21:29:00.002-04:00

We will be there!!! This is our favorite restaurant!!! Who wants to join us at the Grandville Carabba's at 7pm for dinner? We are not promoting alcohol consumption, but you can't go wrong for 15.00 to try their new great food items knowing that it will benefit a great cause!
Hope to see you there!
Eric and Lori

On Thursday, July 30, Carrabba’s Italian Grill invites consumers to "Mix It Up for MDA" at a special event combining exclusive cocktails from award-winning mixologist Charlotte Voisey with new Carrabba’s food items to benefit the Muscular Dystrophy Association (MDA).
Admission to "Mix It Up for MDA" is $15 per person from 5 pm to close at Carrabba’s locations nationwide. The ticket price includes a sampling of four food items from the new Mr. C’s Bar Menu and, for guests 21 years and older, one of Voisey’s signature cocktails created for the event (Blackberry Lemonade, the Italian Lemon Drop or Blackberry Fields Martini) or another drink on the Mr. C’s list.
The food tasting includes a delicious array of appetizers from the new Mr. C’s Menu, designed for snacking and sharing, including: Antipasti Misto – an assortment of Italian meats and cheeses, Mediterranean olives and roasted peppers; Meatballs with Ricotta Cheese – homemade meatballs topped with pomodoro sauce, Romano and ricotta cheeses; Patatinas with Blue Cheese – freshly cooked Italian potato chips tossed with green onions and topped with a blue cheese sauce; and Chicken Parmesan Piccolinos – mini sandwiches featuring sautéed chicken breast coated with Italian breadcrumbs, topped with pomodoro sauce and melted mozzarella cheese.
In addition to monies raised from "Mix It Up for MDA" event admission, Carrabba’s also will donate $1 to MDA for each of Voisey’s drinks sold from July 30 – August 6. During that week, consumers are encouraged to visit www.Carrabbas.com and cast their vote for their favorite cocktail. The most popular drink will be added to Carrabba’s drink menu.
For more information on "Mix It Up for MDA," to vote on Voisey’s special cocktails, or to find Carrabba’s locations nationwide, visit www.carrabbas.com.

My kind of camping

2009-07-02T17:54:00.006-04:00

It has been a while since we have updated the blog. We have been on a bit of an emotional roller coaster since returning home from Hawaii. We have had good and bad days and are at times overwhelmed with this disease and what it is doing to our family. God has been good to us through it all and has still given us strength and peace through it all. We are looking to replace our caregiver, Lisa who has finished her schooling and is now starting her fieldwork. She has been such a huge help to all of us and we miss having her around to help out. She will do very well in her field. Please pray that we can find the right replacement for her soon. We were supposed to have our annual Kammeraad family campout this weekend in Muskegon (Eric and I were just going to go up for the day on Saturday) but my parents decided to cancel it since all of her kids were going through some tough weeks prior and we ended up having a campout in our backyard with a couple of tents and lots of us staying in the house. It was so much fun! The kids spent most of the weekend catching toads in the back yard and we all hung out together playing games, putting our speakers up out back (we love having music outside now)and preparing and eating meals together and camp fires at night. It was great having full bathrooms and a full kitchen while camping! It was great spending time with family. We will have to try this with the Fox side this summer too. My aunt and cousins came in to town Sunday from Mexico, AZ and TX and it was great to spend time with them too. We enjoyed time with them in Grand Haven on Sunday and again here at the house on Tuesday night. My dad's side of the family is very musical so Sapphire got out her guitar and we did something new, we all wrote a song together with her help. Eric said he always wanted to write a song with Zach and the night really meant a lot to him. Even in the little things, God knows the desires of our hearts and answers prayers. Eric has been praying for this for a long time and was blessed to do this with our family. We had a good week and it took our mind off of this disease and let us focus on things that are really important in life (faith, family and friends). Our elevator is finally finished today and Eric took the maiden voyage in it this morning. He went into the kids rooms and woke them up and they flipped out seeing their dad in their rooms. The elevator is so wonderful and will be such a blessing in our home. This was fully covered by the VA and we are so grateful! This weekend for the 4th of July holiday we plan on going to the parade and then having a BBQ at our house from 3-6 to promote awareness for ALSTDI and then going to the Whitecaps to support ALSA and celebrate the 70th anniversay of Lou Gehrig's farewell speech and watch the fireworks. It will be a full day! Eric's mom is coming to stay with us next week which is always such a blessing. We are looking forward to spending time with her. Have a great weekend! Thank you for lifting our family up in prayer and for those of you who have offered to bring meals and pick Eric up and take our kids. Lori and Eric

Happy Father's day to my wonderful husband

2009-06-21T00:15:00.002-04:00

I just wanted to take a quick moment to wish my wonderful husband a Happy Father's day since it is now Sunday and we are still up. Zach and Eric are still hanging out watching a movie and Maddie is staying at Grandma and Grandpa Foxes this weekend. We are about to go to bed, but I wanted to take a moment to tell Eric what a wonderful father he is to our two children. I was trying to find a card for him for Father's day and I realized that we are not the typical Hallmark family anymore so I wanted to say how much we all love Eric and can't imagine our lives without him here. Even though Eric can't do the things he used to, he is a strong man of God who leads our family and loves us unconditionally. We really do have a lot of joy in this house despite this disease. Eric's mind is and will always stay sharp which makes it hard to endure the changes ALS has brought, but I love that he still knows and loves me the same as he always has and he always makes me laugh. We are still praying for Eric to be healed by God in a miraculous way! Keep praying with us. To all of you who are fathers or fathers to be, have a wonderful Father's day!!
Lori

Laminin

2009-06-12T12:41:00.003-04:00

Laminin

Laminin is a protein found in the extracellular matrix, the sheets of protein that form the substrate of all internal organs also called the basement membrane. It is the major non-collagenous component of the basal lamina, such as those on which cells of an epithelium sit.[1] It has four arms that can bind to four other molecules. The three shorter arms are particularly good at binding to other laminin molecules, which is what makes it so great at forming sheets. The long arm is capable of binding to cells, which helps anchor the actual organs to the membrane.
The laminin protein is made up of three polypeptide chains - α, β and γ, giving it a total of six "ends", accounting for a lot of its flexibility in connecting various molecules. Because of this, scientists who create biomaterials are extremely interested in the whole family of laminins[citation needed]. They are a family of glycoproteins that are an integral part of the structural scaffolding in almost every animal tissue. Laminins are secreted and incorporated into cell-associated extracellular matrices.

Laminin is vital to making sure overall body structures hold together. Improper production of laminin can cause muscles to form improperly, leading to a form of muscular dystrophy.

So, what is LAMININ then?

In the human body, we are all made of Trillions and Trillions of cells that compromise our body and all it's intricate parts. What holds this vast body of ours together?

Laminin is a type of protein that acts as the glue that holds all of our trillions of cells together.

During a presentation by Louie Giglio, he displayed an actual microscopic photo of a single Laminin cell and it looked exactly like the photo taken by the Hubble Space Telescope of the black hole light years from Earth.

All who believe in a Divine Creator say that God is everywhere. In the far reaches of the Universe and in every cell of our bodies, is it possible that science can finally confirme the existence of this God who billions of humans believe in? Was Jesus God incarnate? If with this evidence some still do not believe, then they are blind of heart and head. Here is scientific evidence that is shaking the scientific community comfort. Please do not call it “coincidence” it no longer flies…

See Video Link below to watch Louie Giglio's amazing video on Laminin.

http://www.youtube.com/watch?v=_e4zgJXPpI4

Eric

Homeward bound!

2009-06-04T17:45:00.002-04:00

Well, our vacation in Hawaii has come to an end and we have enjoyed every minute of it and are truly blessed to have been able to take this trip. We leave for the airport today at 5pm and fly out at 8pm (4am Michigan time) and will travel throught the night and return home at 7pm after losing 6 hours. We hear that the return jet lag is the hardest especially with losing time. Please be in prayer for safe travel for us on Friday. We are so excited to see the kids and feel like 6 days have been just enough for us to be here relaxing and enjoying God's wonderful creation in another part of the earth and are always grateful to return home. We would love to come back here someday. We just missed whale season by about a month. March to April is prime time for that. We really enjoyed the Luau and yesterday we took the shuttle to Lahaina which proved to be a bit challenging with the chair, but people have been so nice to help us. We have experienced some beautiful sunsets here and will treasure the memories of this trip forever. We read in my daily Bible today and were really touched by this verse: Luke 10:20 Rejoice because your names are written in heaven. Charles Stanley says "we tend to get excited about miracles like curing cancer and casting out demons, but the Lord insists that the greatest miracle is our salvation. Evangelism is therefore a greater work than we can imagine." While we pray for a miracle of healing for Eric always, we have received the greater miracle of salvation.
In His grip,
Lori and Eric

Scenic pics from Hawaii

2009-06-02T14:15:00.004-04:00

Treasuring every minute here together

2009-06-02T12:14:00.003-04:00

We are having an amazing trip here. We have not left this strip of the ocean but there is a paved sidewalk that goes quite a while along the beach so Eric and I went exploring yesterday and I pushed him in his chair (which has been great) to the end at the Sheraton property which overlooks the cliff at the cove. There are sea turtles swimming below and a bunch of kids hang out on top of the cliff and jump off. i thought about trying it, then thought who would stay with Eric? :) It was record heat here yesterday at 92 with high humidity but we didn't care because how could you complain here? We met some more people and Eric had a great conversation with a man named Tim about religion. Pray we can be a light to the natives and the tourists here. Everyone we meet is intrigued by the joy and peace we have which comes only from an active and intimate relationship with Jesus Christ, our Lord and Saviour. He is the one who continuously gives us life. Tonight we are going to an authentic Hawaiian Luau at the hotel. Eric has been having a hard time sleeping here, but he has a hard time sleeping at home too. We'd rather be here not sleeping while we listen to the waves crash outside then in MI where I sit and think of how tired I will be in the morning and everything that needs to be done that day. We have no schedule here and it has been a wonderful break.
Eric wanted to share that last year, we went to the Grand Canyon and saw God's amazing tapestry and now we are here in another part of God's world enjoying his amazing beauty. How can anyone deny that He is our Creator and the ruler of all things. When I stare out at the ocean and think about Heaven and how big our God is, I know that it is Him who made all of this and He holds it all in the palm of his hands!
Enjoy your day and consider yourself blessed for another day of life. Look for the blessings!
Your brother and siser in Christ,
Lori and Eric
Aloha!

Pictures from the plane

2009-05-31T04:39:00.002-04:00

We've arrived safely in Hawaii

2009-05-31T03:37:00.002-04:00

Aloha from Hawaii!
We arrived late last night after a long day of flights. The airlines were really good to us and very helpful with the wheelchair. On our last leg of the flight, we were upgraded to first class from Seattle to Maui because Eric could not fit into our seats. It was a six hour flight and we were treated like royalty. The seats were huge and reclined back so we slept a good part of that flight. We met some really nice people on that flight too. It was just beautiful flying over the Rockys and the Cascades, then the Pacific ocean seeing it through the clouds. When we came upon the islands, it was so green and just breath taking with the ocean and the mountains. We were so excited to be here! We took a handicap shuttle to the hotel and the people here are so friendly. We felt very welcomed at the airport and when we arrived at our hotel. The bellman named Byron personally assisted us to our room and has been so helpful and kind. We had an ocean view room we got to at 9pm Hawaii time (3am our time). I could see part of the ocean out our balcony but Eric couldn't see the ocean from his chair so Byron got us a room right on the ocean today and transferred our stuff for us. The room is so amazing. I am listening to the ocean crash on the shore right now and Eric is sleeping in his chair. It was good that we moved too because this morning, I turned on the shower and a cockroach the size of Montanna scurried across the floor!! I about jumped out of my skin. I have never seen a real cockroach that close up. Byron said he calls them 747's. I have a picture if you want to see, but I didn't want to post it on the blog since we have so many beautiful pictures already. Anyhow, it has been very muggy here the last week they said because the trade winds have not come in so this brings out the cockroaches. I pray I don't see another one this trip. The resort is so serene. We laid by the pool and looked out at the ocean today and then Eric watched the Red Wings at the outdoor lounge with some people we met. I walked along the ocean and people were snorkling around sea turtles in a cove. I am so amazed at God's beauty here. It takes my breath away. We watched the sunset tonight and one man said it was the best sunset they had in the 9 days he has been here. Thank you, God! God has been our Jehovah Nissi this trip and has gone before us as our Banner. We are so blessed! We ate at a restaurant on the beach tonight and Eric saw this shirt he really liked so I went over to them to ask where they had gotten it and I kid you not, they took it off their back and gave it to us. They were from Hawaii and here for a sailing race and the shirt was from the race. People here just live life to the fullest and radiate love. We plan to go down tomorrow morning at 8am and see them off and then there is a church service on the beach. We are truly having an amazing trip so far and we've just begun. Thank you for those of you who have prayed for our safety. We will update more later. I've already taken 97 pictures so it is hard to choose what to post.
Mahalo!
Lori and Eric

Hawaii bound!

2009-05-28T21:25:00.003-04:00

Well,
some of you may know this and some of you will be saying when did they plan this? About three weeks ago, we (Eric and I) decided that we should take our dream vacation to Hawaii. We have accumulated points through a credit card we setup from our time share so I called to see if we had enough points to go to Hawaii and we had enough points to go for 5 nights and the promo was for a 6th night free! We have always said if we sold our house we would take this trip and here we are! We got a good price on flights and we plan to mostly stay at the hotel which is right on the ocean. The kids are staying at the house with Eric's mom and we leave GR airport at 7am tomorrow. We are really excited to be taking this trip! Please pray for our safety as it is quite a long day of flights to get to Maui. We will arrive at 6pm which is midnight your time on Friday. We will try to update the blog with some pictures if we have internet while there. We will be home on June 5th.
Aloha!
Lori and Eric

A night with our Harley Friends and MDA

2009-05-18T22:42:00.004-04:00

Last Friday was the Black and Blue Ball for MDA to raise funds for research for ALS and many forms of Muscular Dystophy and to send kids to camp. Black and Blue meant to wear leather or blue jeans or your Harley gear in which department we are lacking. MDA asked Eric if he would come and share his story of living with ALS that night so we were off to the event which was very well put together. There was a silent and live auction, dinner, speakers, free photos on a Harley (as you can see above my first time on a Harley) It was a wonderful night and I was so proud of Eric when he spoke in front of over 400 people about how the only way he gets through life is with God's help and by our faith. He talked about ALS and thanked them for their help that night and shared the hope we have in Jesus Christ because he knows where he is going. I know that God spoke to someone that night through his testimony. We also met some inspiring people like Alex who has Duschanes Muscular Distrophy who sat at our table and spoke so well and brought tears to our eyes. Life is such a gift that we take for granted. We also had a woman named Elizabeth at our table who spoke who had lost her husband 11 years ago to ALS. We meet people like this all the time who inspire us and encourage us.
We had a good weekend despite some difficulties at night sleeping. The kids are keeping us busy as usual with ball schedules. We are looking forward again to some sunshine this week.

Please keep in your prayers on Wednesday this week a friend, Gloria from our church who is having a serious surgery on her trachea. Gloria gets short winded easily and she still was at our house a few weekends ago spreading bark with her family. That inspires me to not look at things you can't do, but to keep doing what you can.
God Bless you all!
Lori

But until that day.... we will worship you always! a tough night

2009-05-09T10:55:00.007-04:00

We had a tough night last night. I was having a hard time going to the bathroom last night (constipated) worse than I have ever been in my life. Not sure if I want to share this but just being honest. It exhausted all of my strenghth and caused a lot of pain. It even affected my walking with Lori's help. I say this not to say poor me, but to share insight what is going on with us while living with ALS. I realize that I can't eat the same food I enjoy so much like cheese and bread so I plan to change my diet again to more fruits and veggies. It was hard for Lori too because she couldn't help me. Lots of tears were shed last night by both uf us. Every time we have a night like this, we awake with God's mercy in the morning. Today and another time we had a rough night, our alarm came on with the song "There will be a day with no more tears" by Jeremy Camp. What a powerful song that gives so much hope! Lori got up and googled the song and found this powerful video made by Jeremy Camp (you may recall that he lost his wife to cancer) and we watched it with tears streaming. Even Maddie came over and put her arms around us. Zach was still sleeping so we will share it with him later. Anyways, take three minutes to watch this video and then read the words of the song below as a powerful reminder from God that the burdens of this place will be no more when we see Jesus face to face!
Thanking God for His mercies today,
Eric and Lori

Due to technical difficulites, the video is on the right side of the blog. Scroll down to the Jeremy Camp link.

There Will Be A Day lyrics

I try to hold on to this world with everything I have
But I feel the weight of what it brings, and the hurt that tries to grab
The many trials that seem to never end, His word declares this truth,
that we will enter in this rest with wonders anew

But I hold on to this hope and the promise that He brings
That there will be a place with no more suffering

(Chorus)
There will be a day with no more tears, no more pain, and no more
fears
There will be a day when the burdens of this place, will be no more,
we'll see Jesus face to face
But until that day, we'll hold on to you always

I know the journey seems so long
You feel you’re walking on your own
But there has never been a step
Where you’ve walked out all alone

Troubled soul don’t lose your heart
Cause joy and peace he brings
And the beauty that’s in store
Outweighs the hurt of life’s sting

But I hold on to this hope and the promise that He brings
That there will be a place with no more suffering

(Chorus)

I can’t wait until that day where the very one I’ve lived for always will
wipe away the sorrow that I’ve faced
To touch the scars that rescued me from a life of shame and misery
this is why this is why I sing

There will be a day with no more tears, no more pain, and no more
fears
There will be a day when the burdens of this place, will be no more,
we'll see Jesus face to face

There will be a day with no more tears, no more pain, and no more
fears
There will be a day when the burdens of this place, will be no more,
we'll see Jesus face to face

There will be a day, he will wipe away the tears,
He will wipe away the tears,
He will wipe away the tears,
There will be a day.

We sold our house!!!! .... again :)

2009-05-05T22:50:00.004-04:00

We have been extremely busy this past week doing updates on our Jenison home for sale to get ready for an open house on Sunday. I had a friend from my Bible Study go thru the house and give some suggestions for updates and we picked some to tackle and sent out a call for help. We had many painters, cleaners, deck scrubbers, fixture installers, a few meals, Eric's mom here for the week for Eric and the kids. I was at the Jenison house every day Mon thru Sat busy making it really look nice. We also had the Wessely family come out on Saturday to both houses to help us with landscaping through the Young Marines. We are so blessed and thankful for all of the help we had this past week. WE COULD NOT HAVE DONE IT WITHOUT THAT HELP! The Lord has been so good to us in providing all of our needs. We had lots of interest at the open house and an offer on Monday and Today. They were both much lower than we had hoped, but that is the nature of this market right now. We are just pleased to have come to an agreement with the first offer which come to find out is my brother's old roommate and her husband who really love the house. There's just something about knowing someone loves your house, especially with all of the TLC we put into it this week. All I can say is praise the Lord and pray that everything goes smoothly up until close on June 12th.
On another note, we have been very busy with the kids baseball schedules with both kids having a game tonight. Some pictures of the kids are above.
Eric has been on the drug IPLEX for two weeks now and we are hoping to see some positive changes from this drug now that he is up to his full dosage for a week now. He has noticed it is helping him with swallowing. His friend asked him "would you take not getting any worse?" Eric said absolutely.
Happy Cinco De Mayo and Happy Birthday to Eric's mom, Joan! It has been a really good day!
In Him,
Lori and Eric

Daddy Daughter Dance

2009-04-26T15:01:00.005-04:00

Eric and Maddie went to the dance on Friday night after a very full day of running to appointments right up to eating dinner and getting all dressed up and out the door. It was very special that Maddie asked her dad to take her to the Father Daughter dance at her school. Eric originally had said he wouldn't be able to go to this with her when I asked him when we received the first flyer on this from school. But when Maddie asked him this week, he just couldn't say no. Eric went and got her a wrist coursage and had it resting on his feet as she came out in her dress. They both looked great considering how quickly I got them ready to go. We were off and she was proud to escort her dad to her school with her. I did tag along to make sure Eric didn't have any problems while he was there and of course to take pictures. The theme was Candy Land so Maddie's mission became to get as much candy as she could and to run around with her friends from school. She did stay by Eric's side for much of the night and when the music slowed down, she would sit on Eric's lap and rest her head on his shoulder while they spun around the floor in his chair. Eric said how special the night was to him and how glad he was to be able to go with her. Our kids are growing up so fast and you have to treasure these times. Hope you like the pictures. It's been raining like crazy here this weekend after a beautiful 86 degree day on Friday. Zach played his first baseball game on Saturday and they mercied the other team in the 5th inning 11-1 and we were able to make it downtown for inner city missions before the rains came down. It's been a really good week and a great reminder of how blessed we are. In Him, Lori and Eric

An amazing night of worship

2009-04-22T14:46:00.003-04:00

Last night we were blessed to receive tickets to see Micheal W Smith and Steven Curtis Chapman in concert together (this was their first tour together). We were supposed to go with my sister, Kristi and Brian courtesy of their friend Margorie (Thank you so very much!) Unfortunately, Kristi was not able to go after her chemo on Monday as she was very tired so we invited our friends Tom and Heather who were able to go with us. These two artists are two of our all time favorites! They have revolutionized the Christian music industry and are so inspirational to Eric and I with the songs they write and perform. They took us back with some songs and then sang some of our new favorites and then ended the night with some powerful praise music. Stephen Curtis talked about how some of his songs have took on a different meaning after the tragic death of his 5 year old daughter, Maria eleven months ago. His songs that night really spoke to Eric's and my heart. Particularly, Miracle of the Moment, a few words.... "there's only One who knows what's really out there waiting in all the moments yet to be and all we need to know is He's out there waiting. To him the future's history and He has given us a treasure called right now and this is the only moment we can do anything about. And if it brings you tears, then taste them as they fall. Let them soften your heart. And if it brings you laughter, then throw your head back and let it go. Listen to your heartbeat."
I have heard this song so many times, but never really listened to the words. Eric and I shed a lot of tears during this song and of course, the song, Cinderella as that touches the heart of any parent especially a daddy about his daughter. Madison invited her daddy to the father daughter dance on Friday and that is all we could think about. Maddie doesn't care that her dad is in a wheelchair, she just wants to get dressed up and dance with her daddy. The last verse he changed in the song to say I'll dance with her again. Not a dry eye in the church I imagine. That is so true, the life after this one is where we will dance and worship our Great God and see those we love again. He sang of how everything we have, even our children, our spouse, our money, it all belongs to God. How quickly we forget that He has so graciously given us all these things. He gives and Takes away, blessed be the Name of the Lord! What a night of reminders of how great our God is. We have been blessed beyond measure this week! To top off the night, Margorie found us after the concert and said she had one back stage pass left! She allowed me to go back with Eric too so we got to meet Stephen Curtis Chapman and Geoff Moore who is another amazing singer and song writer we had the pleasure of meeting and hearing perform at our church about 4 years ago. It was a late night, but an amazing night of worship!
I am coming to the end of a Bible study on the life of Moses and just went through most of Deuteronomy this week and these versed leaped off the page to me and I wanted to share them.
Deuteronomy 4:39-40
Acknowledge and take to heart this day that the LORD is God in heaven above and on the earth below. There is no other. Keep his decrees and commands, which I am giving you today, so that it may go well with you and your children after you and that you may live long in the land the LORD your God has given you for all time."
And one more....
Deut 4:7
What other nation is so great as to have their gods near them the way the LORD our God is near us whenever we pray to him?
Have a blessed week and give God praise this week if not for anything else, then for the sun coming up and the warmer weather on it's way.
Lori and Eric

God answers prayer!!

2009-04-20T18:50:00.002-04:00

Wow! We have had quite a week. It's amazing how God's timing is not our timing, but he knows exactly what we need and is so faithful to provide what we need in his perfect timing. Thank you to all of our prayer warriors out there who have been asking God to provide our needs. Specifically, this week, our elevator grant was approvedand was ordered today. Along with that, Eric's Dynavox machine which is an environmental control unit as well as communication device was approved which will give Eric more independence in the home and allow him to continue to communicate with all of you. We also had a grant for a fire exit door in the bedroom approved and they already cut it and installed it today (WOW!) We got fitted for a manual chair for Eric on Friday and were told that it could take a while to get it and received a call that it will be delivered tomorrow!
Here is some really exciting news about IPLEX. For those of you who don't remember, Eric and Zach went to Washington DC in November to convince Insmed to release IPLEX for ALS patients for compassionate use as it has proven to aid in improving symptoms of the disease such as swallowing, speaking, chewing, muscle tone, etc. After a long drawn out battle with this, they have finally agreed to release it to 7 PALS (hoping soon to be all PALS for a trial) We just received word today that it will be to our pharmacy TOMORROW! Lori gets to inject this drug daily to Eric and we are praying that it will have positive results for Eric. Praise God for all that He has done for us! We are so blessed!!!!! Words cannot express how blessed we are.
On a lighter note, Maddie lost her first tooth this past weekend and stayed up til midnight waithing for the tooth fairy to bring her "lots of money". The kids are both in Baseball/Teeball and have great teams and coaches. Life is again busy in many ways but life is so good! Have a wonderful week. We really enjoyed the sunshine last weekend and are looking forward to warmer days this week.
Be blessed!
Eric and Lori

He is Risen!!!

2009-04-12T23:15:00.002-04:00

We hope you all had a glorious Easter weekend! We had a wonderful weekend with family. We went to St Johns yesterday and had dinner with Eric's family. They got a ramp for their front porch and his Dad rigged it so that Eric could get his wheelchair in their house. This was the first time Eric had been in their house since Thanksgiving when Eric was still walking much more. It's nice to know that Eric can still go home and access the house. Eric's brother made Eric a puzzle that says "The Joy of the Lord is your strength" in a cross and he framed it with some pictures we had done the summer of 2007 with the siblings. It is very special to us. Thank you, Jary. We have been enjoying nicer weather compared to earlier this week. Today, we went to church and remembered all that Christ did for us on the cross and how He did not stay in the grave. He is Risen and sitting by God's right hand in heaven preparing a place for us in eternity with Him. We sang one of my favorite songs by Newsong called "Arise" Some of my favorite words are
"God looked down on his Son and said. Arise, my love. Arise, my love, the grave no longer has a hold on you! No more death's sting, no more suffering! Arise!!!!
Aren't we so thankful first of all for Christ's sacrifice by taking our sin on the cross and most of all that He is Risen. We, too have that promise of life after death if we are a child of his. We will have no more of death's sting and no more suffering in heaven. It's hard to think about that while we live here on earth, but I think of how people with ALS and cancer do suffer and it brings me comfort to know that those who have gone on to be with Christ no longer have to suffer.
I have a hard time explaining the meaning of Easter to my 6 year old daughter who loves to get Easter baskets and hunt for candy at Easter, but I keep trying knowing that someday she will understand fully. We did have two Easter egg hunts this weekend which were fun for the kids.
This Spring break has flown by. It started out kind of rough hearing of the suicidal death of a dear friend of Eric's parents. It was so sad seeing his wife and thinking of the loss that she feels from him being gone so suddenly. It made us think a lot of all the hurting people out there that think that death might be a better option than living. I know depression plays a big part in this and also that Satan would like nothing more than to tell you that you are right. Talking to people this week about this really surprised me how many people said they could relate to feeling this way at some point in their life. It sure makes me want to tell people how much I love them and how much more our Father, in heaven loves them! Suicide is so irreversible and can change so many lives in seconds. It was just heartbreaking. I know he will be greatly missed by so many. Zach got sick in the car on the way home from St Johns that night and it was snowing to start off our Spring break.
The rest of our week was very relaxing. We watched Michigan State win and then lose in the Final 4 with some friends here. We went to stay at a hotel in Lansing with the Stelma family on Tues night. It was fun hanging out with them by the pool, in the room and getting ALL the food from the concierge lounge. I am not looking forward to getting up early again tomorrow but I am very happy to be nearing the end of tax season!
Be blessed this Easter!
Love,
Lori

Thank you, Dad!

2009-04-09T15:06:00.002-04:00

Just a quick update. My father-in-law uploaded the videos of our testimony on YouTube. The testimony was at our church at Wellspring on Sunday, March 8th. I included them on the video link to the right, part 1 thru part 6. We'll be sending another update soon. Thanks for your prayers.
Love,
Eric and Lori

Testimony to the Homeless

2009-04-01T23:32:00.007-04:00

I wanted to touch base with all of you out there, those of you who have been praying for me and my family. Four weeks ago I started a new treatment at the Born Clinic. It's NASA technology using electro magnetic wavelengths through my body. It's helps the body's natural function to heal itself, particularly muscles, tissues and organs.

Last Monday I was having problems swallowing. When I went in on Tuesday for my treatment I requested something for helping me to swallow and speak. The doctor said they had a program which they then ran on me that very day. It helped right away. That night I was able to eat, swallow and speak more easily - I was even able to eat steak on Friday. (Thank you Klumpp family)

As many of you may or may not know, Lori and I have been volunteering our time to help the Hytinen's ministry, serving, speaking and showing the love of Christ to the homeless on Division Ave at the Inner City Church. I would encourage you to come down and check it out sometime. I guarantee you won't be disappointed. When you give 2 1/2 hours of your time, you will be amazed how God blesses you.

We've been going down there for the last three weeks. I'm overwhelmed at the amount of need that I have seen. So many people need to know Christ. There is a song we sing at Wellspring that makes me weep when I hear it, "God in the City." One of the verses talks about that there is lots left to do in the city for His kingdom. It makes me think about the people in Grand Rapids who live under the bridges who need to be clothed and fed.

It would be a pleasure to work side by side with you going to the inner city to clothe these people, rehabilitate them and show them that they don't need to live on the streets anymore because of the love and hope of Christ. I hope to see some of you out there soon. Call or email us if you want more info or want to ride with us.

Some of you may be wondering what is going on with our home in Jenison. It is still for sale and we have had about 3 showings a week recently. We are praying for God's direction with this home. Please pray with us.
I woke up the other night and God put Psalm 61 in my head and I'm not sure why but I thought I would share it with you.
Psalm 61
From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings. For you have heard my vows, O God; you have given me the heritage of those who fear your name. Increase the days of the king's life, his years for many generations. May he be enthroned in God's presence forever; appoint your love and faithfulness to protect him. Then will I ever sing praise to your name and fulfill my vows day after day.
I am continuing to trust the Great Physician for his healing. My faith and trust are in Him.

Thank you for your continued prayers and love,
Eric

What we have been up to lately

2009-03-19T23:51:00.003-04:00

We have been busy as usual so we thought we would give a quick update (if that is possible)
Tonight we did something really fun. We had a local photographer, Kerry Sierveld come take our pictures. I know it was not my dad who is a wonderful photographer too! I came across her blog thru Zach's teacher and I just fell in love with her work. She has a unique gift and I just wanted her to do some shots of us. She had her hands full with us trying to get us to do what she was trying to capture but she did it beautifully and she is so in love with her work, she went home tonight and already posted a preview on her blog! http://imagesofessencephotography.blogspot.com
I sure hope this link works. If it doesn't, try to google images of essence photography and you will find her blog. WE LOVE THE PICTURES and will post some when we get them!! Wow, my kids look so old!! When did that happen??? Thank You, Kerry!!!!
Last week we went to Winter Jam at the VanAndel and saw Toby Mac and other great bands with a huge group of friends. We had so much fun and the place was packed for God praising and dancing. The pictures above are from that night.
Last weekend we went downtown to Inter City Church Planting Mission on Division with Steve and Cheryl Hytenin to help them with their street ministry they have been doing for a long time. It was a blessing to be there on a beautiful sunny day helping hand out soup, coffee and warm clothes and praying with people who have such a great need to see the love of Christ. Eric was born to do this and I am excited to do this with him. I really need prayer to build up my confidence to share freely with the homeless and down hearted people that come by. We plan to go there every Saturday that we can with Hytenin's and the other people that have been a part of this ministry. We encourage any of you who are interested in joining us to call us or Steve or Cheryl to help out! They really need some more people to help reach out and you will be so blessed for doing it!
I am still buried in tax returns and can't wait for April 15th!!
Zach has started Little League Majors in Grandville a few weeks ago and has a great team and coach this year! Sadly, his hamster Shadow died tonight. Zach discovered him before bed tonight and we both cried. He lived a good life so I think Zach is OK with his passing, just sad.
Maddie is busy playing with her new friends in the neighborhood since it is getting nice and is still all girl and all 6! She will be starting Tee ball soon.
Eric has been busy reading up on all of the latest info on the drug IPLEX. Eric is one of 6 original and now 20 people who have their Investigative New Drug (IND) for compassionate use approved finally since November 08 when he went to DC. They will finally be conducting a trial with this drug in patients with ALS. This is a huge release thru the FDA and has been posted on many ALS sights and many of you have been asking us about this. Please pray that this would continue to go along quickly and that the IND cost would go down from $2,000. We are praying we could split this with the others involved and not each charged this much just to get access to this drug. We also pray that this drug will help stop the progression of ALS in Eric and others and that the trial would start soon and prove effective and be released to all PALS. Eric has also been doing a new treatment at the Born Clinic that uses technology that NASA uses for astronauts coming back from space. It is pulsating electromagnetic wavelength frequency that helps the body heal. He has done two treatments and has felt relief of pain and has been able to sleep much better which has been great for both of us. We are excited about this! Pray that this continues to help Eric in the healing process. We have been praying almost the last two years that Dr.s will find a cure for this disease and there have been some new breakthroughs. Keep praying for this. We appreciate all of your prayers!!

So many things left unsaid

2009-03-09T03:44:00.004-04:00

Hi Everyone,
It is late and I can't find sleep tonight. We have many nights like this and my mind keeps thinking of all of the things I wish we could have shared tonight at the church service at Wellspring. We haven't shared our testimony in a long time and about what it is like living with a terminal disease and we were somewhat unprepared tonight (well, at least I was) We were overwhelmed by seeing a sea of faces that came from near and far to support us tonight and the familiar faces of our church body listening to "our story". It means so much to us, the love and support we have from so many. We want to thank all of you for your love! I thought we were going to just answer Pastor Gary's questions tonight, but Eric (who loves to talk and share) took us way back tonight to his childhood and his need to be loved and feelings of rejection that followed him throughout his life. I know it brought back some feelings in his family of life growing up (many of his aunts and cousins who we rarely see came into town) All of us can relate to struggles in childhood and past experiences that left hurts or insecurity. I know people in my own family struggle with feelings of self worth and inadequacy. I know that these feelings have carried forward from generation to generation and have put us in bondage to that generational sin.
Eric brought you through our relationship when we met and got married and the struggles we had. We were on a path to destruction in our marriage. I am so grateful for the day that my husband gave his life to Christ and the changes that God made in his heart that was now filled in a way that no thing or person in this world could fill. It changed our life, our story, our kids lives and their children's lives. It broke the chains of bondage that Satan had on us.
"You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives." Genesis 50:20
We have come through so much since that day. We have had legal battles, miscarriages, loss of jobs, overwhelming debt, deaths in our families and loved ones, and this terminal diagnosis. I know many of you have similar stories. But our God is so much bigger than all of these things and He has carried us through all of these things in such powerful ways we should be shouting it from the rooftops!
My son, Zach said we should read the verse More than conquerors when we asked him if he had anything to say (he actually whispered that to me) This was the theme verse for our fundraiser last year and I had thought I had that on my sheet and knew it was from Romans 8, but was not prepared to share it. Pastor Gary knew that it needed to be shared because God put in on his heart while we were speaking and he shared it at the end and I want to share it again with you:
Romans 8:36-40
As it is written:
"For your sake we face death all day long; we are considered as sheep to be slaughtered." No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
Amen and Amen!!!!! Thank you Jesus for bridging that gap for us!
If you haven't read the book of Romans it is so powerful!
I am so proud of Eric and my children. I believe Zach wanted to share tonight that people who look at him at school and at play outside of our home, don't have any clue what he is going through. He has come home crying some days because people just don't understand and it just breaks my heart. His life is not your average 12 year old's life and he has matured more than he should have needed to going through this disease with us. I know that God sees his struggles and his pain and he LOVES Zach and He understands. Who endured more than God when He sent his own son to be crucified for our sins. Zach has a heart for God and is so much like Eric. He loves music (and sports) like his dad. Our kids are watching our every move and they want to be just like us. We need to lead by example (Christ as our role model) Do we mess up? Oh yes!!! We are so far from being perfect, but God loves us anyway!!!
Then my beautiful daughter Madison, who gets her hair and her mischievous grin from her dad ran up at the last minute to sit with us. She was signing numbers to grandma and waving periodically to people and pointing out her stamps on her hand and handing me a rubber duck while on stage with us. That girl has a free spirit and I have been told repeatedly throughout her 6 years of life by Eric's parents how much she is like her dad! It doesn't surprise me because I know I was never that naughty!! :) We love her dearly and I know that she is processing all of what we go through and doesn't quite know how to deal with her emotions at this age but when we are sad, she comes and places her hand on ours or just hugs us. I pray that she will come to know Christ at a young age so she can live the life God wants for her and not go through the things we learned the hard way!
We forgot to show the video of what it is like living with ALS that my dad made a year ago. If you haven't already seen it, I think it is a link on the right of our blog page. The night really didn't focus around living with ALS and I pray that God used us to share with people the powerful change He brings when we ask him into our hearts and accept him as our Saviour! If you haven't done this and feel God tugging on your heart, we would love to pray with you and share his free gift with you. We don't know when we will take our last breath. Life is so short here on this earth, but eternity is FOREVER with Christ! That just puts it into perspective. Life is not about us, we were created for HIS GLORY by HIM. People always tell me how strong I am, and sometimes I wonder if people think I just don't have feelings because I don't always cry, but Christ has given me such a peace about where Eric is going if he should pass away from ALS or anything else that I don't think about that. I treasure every moment that God gives us together. I am so happy and blessed. I focus on that so I don't cry every day and wallow in self pity. I have no idea what the future holds, but neither do you. I am a person who likes to be in control of things (just ask Eric) but I have NO control here. That's how God wants it, can you imagine what life would be like if we were in control?? CHAOS!!!
We were overwhelmed by the applause and some of you standing to your feet and I really hope that wasn't for us, but for God and what he is doing. We know you love us so much and so many of you are praying for us. We know the road may get harder and we know you will come along side us and most of all God will see us through!
I was reminded recently in studying Moses life that it is God's privilege to provide for us and it is our privilege to trust and obey.
Matthew 6:33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. So true, God provides all our needs when we seek and trust Him.
My daily study bible which I have failed to pick up for a very long time brought me again to Numbers where Joshua and Caleb said, let's go to the promised land that God has given us while the 10 others said no, there are too many obstacles in our way.
I love quoting Charles Stanley so I will do it again "Joshua and Caleb lived to see the Promised Land, but only because they focused on the goal God had laid out for them and not on the obstacles standing in the way. The blessings God has in store for you are just as rich! Never allow shortsighted vision - especially one focused on obstacles - to block the far-reaching plan of the Lord." What a great reminder!
Philippians 3:14
I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.Our goal is not anything here on this earth, our goal is heaven and reaching as many people as we can to Jesus while we are here. I know God is not finished with us yet, hence the incorrect title of Eric's e-mail to some of you called "my last speech" His voice might go, but there are other ways to share the message and we pray that He will continue to use us for His glory.
Well, this was much longer than I had planned but there were many things that I didn't share that were consuming my thoughts. Hopefully now I will find rest.
God bless you all!!
Lori
Thanks for the photos so quickly, Joel

P.S. My dad and brother video taped the evening, if you would like a copy, let us know. It may take a while but we will have one. We video everything now for our kids and others who we can impact if Eric loses his voice.

Heading back to Michigan

2009-02-28T00:01:00.003-05:00

Our vacation has sadly come to an end. We are heading out tomorrow morning so if you could keep us in your prayers on Saturday and Sunday for safety while we travel, we would really appreciate that. We had an absolutely wonderful vacation! Great weather, great accomodations, great fun with family and our dear friends, just a great vacation. We just love Orlando! The time flew by, we had hoped to get meet some people we have met thru our blog and ALS and friends that have moved to FL while we were here, but time went by too quickly so maybe next year!
It's time for bed and we are TIRED!! We are looking forward to seeing our family and friends at home soon!
God bless!
Lori and Eric

minor setbacks on our trip

2009-02-23T14:38:00.003-05:00

Matt and Steph's first excursion in Florida was to the ER!
Eric enjoyed a little too much sunshine!

Hanging out in the sunshine!

2009-02-23T13:58:00.002-05:00

We made it to Florida on Saturday at 4:30 after 22 hours in a van packed with six people and luggage for more like 12 people :) We stepped outside to 76 degrees and had heard that Michigan was being pelted with lots of snow and cold temps. What better time to leave! Unfortunately, we spent our first night worrying about our friends Matt and Stephanie who went to the ER at 7pm for chest pains that Matt was having on the last leg of the drive that wouldn't go away. They called their Dr. and they said to call 9-1-1 and go to the hospital so while me and the kids were out getting a few groceries and picking up pizza while Kucinski's and Eric were napping, The ambulance and 6 people came in and hooked up Matt to all kinds of stuff and hauled him off to the hospital. We waited at the timeshare to get an update on all of the tests that were run to rule out any cardiac problems (EKG, Catscan and chest X-ray) Praise the Lord, they were released about 1am and they ruled out anything serious and said it may have been stress related (getting everything set to go on the trip with work, etc.) or maybe driving in the car for 22 hours with only a few hours of sleep) Needless to say, we will be splitting the trip up on the way home by stopping overnight somewhere. Even with three drivers, it was hard to get sleep on the off time in the car. The trip down went really well, traffic and weather wise though. The kids even did really well.
Now that we are all caught up on our sleep and rested, we have been really enjoying the sunshine! We hit the pool yesterday and Eric opted for no sunscreen on his arms and legs (as a mom and wife, I should have lathered him up anyway) As you can see from the photos, the sun is very hot here and Eric is a little lobster like right now. He will be enjoying time in the shade today. We will be going to Sea World tomorrow and can't wait. We've heard great things about and the kids have never been. We are so grateful for the time to take this vacation and so grateful for our wonderful friends who have been so helpful and fun to have along. We are blessed beyond measure! Feel free to drop us a note by commenting on the blog or email us direct at info@ericfox.us We'll try to update again soon!
Love,
The Foxes and the Kucinski's

We made it to Florida

2009-02-23T12:06:00.000-05:00

Good news... bad news...

2009-02-10T13:01:00.003-05:00

An older picture of Eric when he returned from his mission trip to Vietnam three years ago. He looks so handsome with his tan!

Many of you are wondering what happened with our house sale and the bad news is the
family was unable to secure their financing at this point so our deal fell apart. We are disappointed by this, but we know that God has it all in his hands and will bring along another buyer so keep sending those prayers up! We had two showings on Monday already so maybe we will get an even better offer which will be worth the wait. That's the bad news. The good news is that we got our final approval letter on the Specially Adapted Housing grant after over a year from applying. It is such a process and you have to be diligent in following through, but it finally paid off! We will be able to pay a portion of our home off as principal only when we receive that grant money in approx 3 weeks,so that is great news and it came in time to get the exemption on our property taxes for disabled veterans which is what we have been praying for. I need to share this because it is a huge answer to prayer!
On a sadder note, the disease is really taking it's toll on Eric lately both physically and emotionally and I won't lie, it has been so hard to watch him as this disease progresses and there is nothing we can do to stop it. I just read today that the President of ALSTDI (huge research institute in Boston) passed away at age 39 (Eric's age) from ALS. It brought me to tears as I thought about the prospect of losing my husband and father to my children! It makes me want to cling on to every day, yet life still goes on all around us, there are still appointments to keep, bills to pay and responsibilities to uphold. Yet the sun is shining today! God hasn't gone anywhere through it all. We are so grateful for his love! We are looking forward to a break from it all in Florida and we leave Feb 20th and return March 2nd. (JoAnn, we need your contact info if you still want to meet us in FL :)
Eric's mom is here again this week and is again a huge blessing and help. I am supposed to be working right now so I should keep this brief (like I can do that)
Thank you for your prayers and love!
Lori and Eric
P.S. please keep Kristi (my sister) in your prayers as she is still undergoing chemo treatments. I was able to go to her appointment with my mom yesterday and I just thought, why do we have to live in this world of disease! Jesus, come back soon! That's a whole other post, but share His salvation with your friends and family. We want to be ready when He comes back!!

Updates-lots going on...

2009-02-02T21:39:00.004-05:00

We wanted to let you know that we sold our home in Jenison on Saturday after a few counter offers. We are disappointed in where the market has taken the value of our home, but very excited and relieved to have this home sold after 10 months on the market. Please pray that we can get an inspection and appraisal in the next few weeks to close before we leave for Florida and that the appraisal will come in where we need it to. Good things are happening with our VA grant and the elevator request so keep praying we will hear from the VA soon!
Other good news is that our basement is finished and the kids now have their own rooms which they love. I have an office for the first time ever and just in time for tax season. My dad and brother helped me to put together a huge desk from Costco (thank you!) so I hope to get my personal and tax stuff organized this week which will hopefully help me keep on top of things.
I have to say I am excited to see how God is taking care of every detail of our lives but in the same breath I am so worried about what the future will bring. Please pray for Eric as I worry about him every day. I have noticed changes in his breathing which scares me a lot. I have been dealing really well with the changes that ALS has brought to Eric's body, but I can't help him breathe. I feel very helpless and have been praying that God would restore his breathing and his speech. We sang a song in church last week by Frontline worship that really spoke to me called "Better in the End" the words are below:

If theres anything left I haven't given
Anything left disguised or hidden
I can fell you pulling me far away from what used to be
Tired of feeling the same old feeling
Want to move on to what im dreaming
I can feel you pulling me far away from what used to be

Anything that's left to do
Anything ive kept from you

I don't want to fear when you bring change
Make yourself at home in me again
You can see the picture of my life
so much better in the end
so much better in the end
so much better so begin

I know God doesn't want us to fear change and I know that change is part of ALS and our life right now so please pray for God to give us the strength and not to worry about the future. I am so lucky to have Eric as my husband and don't know what I would do without him in my life so we hold on to each day as a gift from God.
I have to put a plug in here for the movie "Fireproof" now out on DVD. We never got a chance to see it in the theatres so we bought the DVD and watched it last Friday. SO powerful with such a great message for marriage! We cried a lot and were reminded of our covenant to each other and the powerful change that can only come from God. We experienced it early in our marriage when Zach was just born and Eric gave his life to Christ. God saved our marriage! Eric became on fire for God and he gave me a desire to turn my life back over to Christ and to live for Him! Our marriage has been able to withstand any "fire" that has come our way and that is how God intended marriage to be.
Have a great week and if you are married, love your spouse! Do something special for them or watch the movie together.
Thanks for praying!
Lori and Eric

An offer on the table!

2009-01-28T14:35:00.003-05:00

A quick update. We have an offer on our house. Praise the Lord! It is quite low so we have been praying about it and have put our counter offer in today. Could you please pray that they accept our counter as is. We would be so happy to have this house sold. Today's market is do difficult to sell a home. Home values have dropped so much that we are needing to get a loan to sell our home. I know this has affected so many of you out there and we are praying for many of you in tough economic times.
I attached a picture of the sun coming up over the lake through the woods behind our house to remind us that God's mercies are new every moring! Even when it is bitter cold and snowing. We are blessed!
I'll try to update more soon!
Lori and Eric

A huge thank you!

2009-01-18T21:35:00.005-05:00

Eric and I wanted to extend a heartfelt thanks to his mom, Joan for staying with us last week from Monday thru Friday. She offered to come help out this week and ended up staying until Friday. She was my extra set of hands this week as she prepared breakfast every morning for Eric and fed him after sleeping on the couch with Maddie at night. She helped get Maddie off to school and cooked and cleaned every day for us. I woke up to coffee perked in the pot every morning. I was able to run errands this week with no worries. Eric and his mom had great conversations as did I about life with ALS and how it has affected our family and how hard it can be to see Eric having this disease. The kids loved having their grandma here too. I am not saying this to make anyone feel like they haven't done these things. Some of these things can only be done by one other person, his mom. We just wanted to share our appreciation and let her know publicly that these things don't go unnoticed by us nor by God. So, thank you!!
Last week was a very busy week for me since I decided to plan a surprise birthday for Eric about 10 days ago and had to be sneaky and do a little running around more than usual so the timing was great to have some help. I only invited some close friends (I apologize that I left some good friends out in hindsight) without kids and didn't include our family this time due to lack of space. We packed this house to the max and Eric was quite surprised and a little overwhelmed. Personally, I hate surprises, but I really wanted to take some time to show Eric how much we all love him, especially as his birthday is fastly approaching. We celebrate life daily and the gift that it is.
Eric (and I) wanted to let everyone that came know that he really appreciated them coming and making him feel so loved. It had been a rough week physicaly and emotionally for Eric and he was really growing weary and tired of this disease. The fellowship was great and so uplifting!!! The food was great! We had Pasta Carrabba (Eric's favorite)and other food and we stuffed ourselves and have meals tucked into the freezer for later.
He was reminded today at church in a Loui Giglio video about how tiny we are compared to our great BIG GOD yet He is so involved in every detail of our lives walking beside us and seeking a relationship with us! That's what life is about! First and foremost, a relationship with Christ and the relationships he wants us to have with eachother on this earth. He was moved by the worship music to stand to his feet and praise our God which inspired a friend who said she just didn't feel like worshipping today because of some bad circumstances she was going through. We all have those days where something is blocking us from receiving from God (sickness, finances, broken relationships, past hurts, etc.) but God desires our everything and we need to surrender to Him when he calls us to draw near. We watched a great movie that a man says "I've given up on God" and the priest replies, "that's OK, God hasn't given up on you". (Count of Monte Cristo). Sometimes we give up on God, but he ALWAYS pursues us.

My husband, the "Iron Horse"

2009-01-16T22:22:00.004-05:00

It has been busy as usual around the Fox household. We went to an ALS research update last night downtown presented by the ALS Association and were honored when they surprised us by presenting the Iron Horse award to Eric. Iron Horse was Lou Gehrig's nickname and they gave this to Eric for all of his efforts in the ALS community including the ALS walks (thanks Fox Trotters), his speaking, his work towards grants for ALSA, help in the office and inspiring others with this disease and more, I can't even remember everything they said, just how proud I was of my husband. He has a huge heart and is full of passion in everything he does. I feel like the luckiest wife alive.
We started this new year in a quiet way with the Stelma's and the Barr's coming over with the kids to hang out which was great! Notice in the picture above that our dog Prince is sitting on Dave's lap with his Michigan State jersey to match Dave's hat! Our dog sees a lap and he gives no warning and he is there! Poor Dave comes in the door in his wheelchair and doesn't have a chance! Prince has been such a wonderful addition to our family! We have almost had him one full year! The kids made a huge snowman after all of the crazy snow we have been getting and the next day, the snow melted to the ground! Michigan is so unpredictible! It is just plain cold this week! temps below 0 with windchill. This is really hard for Eric because of his poor circulation and atrophied muscles. We are really looking forward to our trip to Orlando, FL at the end of February. It can't come soon enough!
Eric had 13 guys over for the College Football National Championship. He really had a great time hanging out with them. It really lifted his spirits being surrounded by his friends. Our new home as all of our other homes has an open door policy. Everyone is welcome here and we love to have people visit here. It has become harder to go out due to the cold and needing to load the wheelchair and plan accordingly when we do so visitors are always appreciated!
We love you all so much and don't know what we would do without you!!
Be sure to tell Zach Happy Birthday this weekend! Our firstborn turns 12 tomorrow!!!
Eric is also approaching his birthday this Wednesday, the 21st and will be 39! We don't dread birthdays at our age but rather celebrate life daily and thank the Lord for every day He has given us to live and to love! 33 Miles sings a song called one life to love which I love! Both of their albums speak to me in such a powerful way!
Have a blessed week and stay warm if you live in Michigan!
Lori and Eric

A New Year has begun!

2009-01-03T20:18:00.002-05:00

Well, the past few weeks have been full of things well out of our control! God has been teaching us patience lately. We have been snowed in quite a bit before Christmas and then we all got the stomach flu on Christmas eve and Christmas day so we have been spending lots of time together at home. We have had some snags with finishing the basement too which I believe are all fixed now and we are moving forward with getting the kids rooms finished. Last Saturday night we had a very stong wind storm and our power was knocked out during the night which made it very hard to sleep in a silent house with howling winds all night. Thankfully, our power went back on by Sunday evening. We just had our last Christmas gathering today with Eric's mom and dad which was nice and we were able to celebrate Christmas with my family the day before Christmas eve and luckily no one else got sick on that side.
Despite all of our amall challenges, we have still been blessed every day to wake up and spend it together. This house has been a huge blessing to us and we are so grateful for it. We had a few showings last week on our Jenison house and have interested parties that have houses they need to sell so please keep praying for God to guide us concerning that home. I can't believe our Christmas break is almost over. We have really enjoyed not having a schedule and sleeping in when we were able to! Eric has a few doctor appointments next week and we are praying that he will get access to the IPLEX drug through one of those doctors. We are praying that 2009 will bring us a cure for ALS and pray blessings for all of our friends and family. I think of the song and verse Taste and see that the Lord is good! Speaking personally, I am really missing quiet times with the Lord. There is always something that has been taking the place of that time and I am really needing to get back into God's Word!!! A friend has offered to take Zach to school in the mornings for me which will help me out so much so I am hoping this will help us with our morning routine. We'll try to post again soon and update you after Eric's appointments next week. Continue to pray for Eric and a cure and his safety.
Love,
Lori and Eric

A lot of snow!!

2008-12-19T22:38:00.004-05:00

the pictures above are of my sister and Brian, The Kucinski's and Eric's parents at the table and Zach singing at the Griffins game for choir and Maddie's makeover at Libby Lu with Olivia for her birthday (no hurry for that girl to grow up!)
Please pray for my sister Kristi as she awaits more tests for her CA125 levels on Jan. 5th and a plan of action from her doctor. Please pray boldly that the cancer is gone!

Life has been quite busy for us since we decided to purchase the handicap accessible home in Grandville back in early October. It was so amazing to see how God worked out all of the details so that we could be moved in and getting settled less than two months after we found the home. Jon and Alisha (the sellers) have been uprooted from their home quite quickly too as they only had listed the home for a few weeks before we met them. They have been working on finishing a condo to be accessible for her and living with her dad in the mean time. Keep them in your prayers in their transition as well as us. It has been hard to get into a routine here for me since I am juggling a new school schedule for Maddie in Grandville and continuing to drive Zach to Jenison early every morning and figuring out each day how he will get home. I am grateful that today is the start of Christmas break (a day early due to the huge blizzard this morning in case you are not from around here) We just got our road plowed at 8:00 tonight as well as our driveway. Eric and Jim tried to head to the Born Clinic today and got stuck twice so they skipped it. We are praying about what to do about Zach's school since he really wants to stay in Jenison, but I don't know if I can do it. This will be really hard for Zach to change being in 6th grade and all of the great things he is involved in academically at Jenison and he has one of the best teacher's right now which makes it really hard. Lord, help me to do the right thing!
The house is great! We are meeting a few neighbors which is hard to do in the winter. Maddie had a few girls from school over for her birthday this week which was fun but a little chaotic as you might imagine with 7 girls from age 5-7.
We have been working on finishing two rooms and a bathroom in the basement for the kids since they have been sharing a bedroom and Maddie likes to talk and sing every night while Zach tries to go to sleep. We have had a few snags with a small leak in the shower upstairs that we hope will be fixed next Monday and then we will be ready to drywall and move forward with finishing. It has added a lot to our plate with just making small decisions about how to do things which just convinces me that we did the right thing by not building the whole house or even adding the addition on to our old home. It is stressful and would not be for us right now with everything else. We are excited to have a little more space for the kids and are praying that the elevator would be approved soon for Eric to be able to get downstairs.
Eric has been doing pretty good. It has been hard for him being it's Winter again. The cold weather is tough since his circulation is poor in his hands and he gets very cold quickly so we have decided to stay home more which can get a little lonely too. Nights are getting more difficult to move in bed as he can't get comfortable and needs help rolling over. Eric has a hard time getting around besides sitting in his lift chair or by his computer and I get nervous when he tries to do more for fear he may fall so he gets a little bored of the same things. I have the opposite problem and can't sit down because there is always something to do. It is hard to find balance for us. I know Eric would love it if people stopped by to hang out here or take him out on a day that is not so cold. Despite the harsh reality of this disease as things progress, we still can laugh together most days and we love each other more each day by God's grace. Please pray for healing of Eric's body and a cure for ALS with us! We are hopeful in getting the new drug IPLEX soon as much has been happening since his trip to DC regarding this drug.
We also lost our physical therapy and personal care (not our visiting angels) about the same time we moved for loss of coverage through Medicare which came as a sudden surprise. That had been very helpful to us and we were very sad to lose that. My friend Heather has been helping me clean for the last few weeks which lightens my load substantially and she cleans like no tomorrow! Thank you, Heather! Eric is actually waiting right now for his physical therapy excercises and it is getting late and we need to get to sleep!!
We'll try to post more soon and wish you all the most wonderful Christmas this year!!
In Christ,
Lori and Eric

Luke 2:7-14
and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no room for them in the inn.
And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, "Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger."
Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, "Glory to God in the highest, and on earth peace to men

MERRY CHRISTMAS!!!

ALL MOVED IN

2008-12-11T17:55:00.003-05:00

For those of you reading this, you are probably wondering what happened to the Fox's...

Well, we haven't fallen off the face of the earth. We have been blessed with a beautiful, handicapped-accessible home!!!!!!

We moved in two weeks ago. Thank you to all the men and women, friends and family who helped make it possible. We are so grateful to all the many hands in the way which everyone used them to help us.

We only had one casualty. Andy, we hope your finger is well on the way to being completely healed.

The kids, Zach and Maddie, are adjusting well to the living arrangements as the builders are finishing the basement for their own bedrooms. Hopefully they will be done by Christmas.

Lori has been busy trying to make the new home feel like Christmas with all the decorations as well as getting caught up on all the bills and getting everything in its place in our new home and taking care of me.

Zach is busy at b-ball practice tonight, and Lori took Maddie to the mall to Libby Lu's to get decked out as a princess for her birthday.

I'm here with Jim, my caretaker, trying not to get into too much trouble as we try to fix all the world's troubles. :)

We will be adding pictures and updating the blog soon - we promise. We wanted to give you a quick update as to what we've been up to the last couple of weeks. Thank you for all your prayers.

Specific requests to you prayer warriors:
1. That Lori would not feel so much pressure and stress and be able to arrive at some sort of normalcy
2. That the other house would sell or that God would lead us into what his will would be for that property
3. For continued strength and God's presence in my life and for healing for my body
4. That our request to the VA for grants and assistance would be approved of in a quick manner
5. That we would be used by God to glorify him in all that we do and say

All my love, Eric Fox

Trip to Washington DC

2008-11-16T13:21:00.009-05:00

My dad, Barbara Byers, Stephen Byers, and me

My dad getting an interview in the Mariott!

Mike and Joe having fun at the IPLEX rally!

My dad and I in front of the Washington Monument and the World War 2 Memorial!

Us in front of the Lincoln Memorial Statue!

Just let'n you know what we were doing,

Last weekend my dad brought Mike DeBoer, Joe Striet... and myself to DC for a good break and to protest about a drug called IPLEX. We drove for about 10 hrs. and finally got there. Then we slept in a hotel room (Mike slept with Joe, dad slept in his own bed and i got the roll-away. The next morning we drove to the National Archives building to see the ORIGINAL Declaration of Independence!!! It was so... CooL!

Also, we went to the World War 2 Memorial and Vietnam Memorial to see all the people who died for our country.

Then we walked down to the Lincoln Memorial and saw the 19 foot tall Abraham Lincoln statue. We got pictures in front of it.

Then we got really LOST through the winding roads and ended up by the Jefferson Memorial and the Pentagon.

We finally got out and went to Old Alexandria for a very fine dinner at a 200 year old italian restaurante. The waiter barely knew Any English! I got a meat filled ravioli with a side of spaghetti, my dad and Mike got fetticuini alfredo with chicken on top, and Joe got fetticuini alfredo with shrimp on top. All in all, it was Great Food!

We went back to our hotel for the night and got up in the morning and had a buffet breakfast.Then we went to the IPLEX Rally to help my dad!!!!!!!

Then we went on a tour through the Capitol Building.

It was AWESOME!! Then we came back to the rally to say our good-bye's.

We drove back to the Washington Monument and went on an elevator all the way up to the tipee top to get a birds-eye-view of DC. It was 512 ft tall! The people looked like ants! When we went back down the elevator they slowed it down to show us the different stones that were donated to the Monument.

When we got to the bottom we drove to the Hard-Rock Cafe to eat. My dad and I got chicken strips, Joe got BBQ chicken wings, and Mike got a big, juicy burger.

Finally, we went to the Mariott on Pennsylvania Ave. to retrieve my coat I accidentilly forgot. Also, there my dad got interveiwed and we got a video called Indestructable which is an Action Packed, Suspensful movie about a man(Ben Byers and lost his battle with ALS in July of 2008) who has ALS and goes around the world trying to find a cure.

Then we drove home! Home, sweet, home!!

Thanks Mike and Joe for making my trip so much fun!

P.S. Mike I'm still waiting for my haircut! Snip! Snip!!

Zach

Hello to the Youth Group at Beverly Reformed Church in Wyoming!

2008-11-02T22:24:00.003-05:00

We just returned home from speaking at the Beverly Reformed Church Sr High Youth Group in Wyoming and met a great bunch of kids as shown in the photo above. It is such a great opportunity when we are able to share the love of Christ and how ALS has affected our lives and how this trial is meant by God to strenghten our faith and glorify Him in all we do! (1 Peter 1:6-9) We pray that these teens will turn to Christ in their times of trial and lean on His promises in His Word. It's been a while since we were in high school, but it seems like not so long ago as far as the choices we made back then and how we were living and when I look back I think how much I wish I was passionate for God back then, but God was always pursuing us and wanted to bring us back to Him. He never lets go of us!!! Anyways, it was great to meet you all and we hope to come back and visit your group again sometime.
The other pictures above are of our kids in their halloween costumes. Zach was a hippie and Maddie was a cheerleader. The sumo wrestler costume was borrowed from a friend and Zach wore it last year and it was a hit. We had borrowed it again for a friend of ours and Maddie wanted to try it on and it was hilarious!! We were invited to go trick or treating this year hayride style so we loaded Eric's wheelchair on it and it was pretty fun being able to watch the kids go trick or treating. They got some good candy too. Lots of full size candy bars that we will have to try to stay out of. Tomorrow we have no school so we are looking forward to sleeping in! We are going to visit the school by the home we are purchasing in Grandville and look at the house again with Eric's mom and sister and Zach has not seen it yet either. We got a call today to show our house tomorrow night and have talked to a few couples who are interested in renting it so please pray for God to sell our house or the right situation to rent it out. We know God will continue to provide our needs as he has all along the way.

Eric is leaving for Washington DC next Monday with Zach and Joe S and Mike D to ask for the drug IPLEX to be released to the patients in the US for ALS and he is also celebrating Veterans day on the Capital with festivities they are holding for Vets. I may have already shared this (can't remember what I did yesterday) but please pray for their safe travel and Eric to be safe while away from the comforts of home and me as I tend to worry when he is not by my side.

Don't forget to VOTE on Tuesday! It is our freedom and our right!! Our Pastor said today to "look at God's truth, follow God's Word and vote the Bible!" We believe that with all of our heart and encourage you to do the same!

Be blessed this week and tell someone that you love them!!!

Celebrating Life...

2008-10-31T16:54:00.001-04:00

Niagara Falls in the fall and more...

2008-10-29T20:46:00.003-04:00

I realized I forgot to put some pictures from our last day of our trip when we headed home from Niagara, NY. We got up with it still snowing and very cold. We went over to the falls and it was like a ghost town. Eric got out in his wheelchair for a little bit, but we did not have the right clothes for the weather so he got back in the car with his parents while I took some pictures and video. We were at the horsheshoe falls and I was about to go back to the van and I thought, I should go over to the American Falls quick and snap some pictures. I am so glad I did! It was breathtaking! The fall colors were so vivid with the massive falls just crashing down on the rocks below creating a lot of mist. While I was about to leave, God allowed the sun to peak out from the clouds and a rainbow was formed at the bottom of the falls that I felt like God sent just for me. It brought tears to my eyes as I said "Thank you, God!" His creation just amazes me to no end.

The rest of our trip was long, but good. We really enjoyed spending time with Eric's parents one on one like that. That's something you rarely get the opportunity to do and we had fun laughing together most of the weekend!

Yesterday the VA inspection went well and the last step is our appraisal and we should be on our way to a new home soon! We are so excited! As we left yesterday, Eric said it feels so peaceful to be in this house. I agreed. It just feels right! We are so blessed to have met the Middel's and have formed a relationship that I know will continue. She shared our story on her CarePage and I know I have shared many of the details of the way God brought our two families together like he did, but if you want to read her story too, go to www.carepages.com and log on to alishamiddel for her carepage! I agree with her totally that this was not fate, destiny or coincidence, It was God's hand in answer to two families prayers. God deserves all of the praise and glory!! Here is a verse that Eric read recently that reminded us of how God deserves all of the glory in our trials.
1 Peter 1:6-9

In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the goal of your faith, the salvation of your souls.
We watched a movie called "The Note" this week and it really touched our hearts because one, it was about adoption and two it revealed how God can put people together that can be explained no other way! I recommend the movie highly. There are not many decent movies out there now a days so put it on your list!

Eric is recovering very well from his fall and has a very pretty purple shiner next to his stitches and also developed a bruise on the end of his tongue too. His ankle seems to be a mild sprain and he is still able to walk around on it, thank goodness and the swelling has gone down.
Eric was asked to speak at Grand Haven Christian school Chapel a while back and that was this morning. We got up early and brought the kids with us and he did a great job sharing his heart and how much Jesus means to him! He talked about how although he can't do things physically that he used to, but no one can take away his spirit and passion for God! I am always so proud of Eric being a light to others during this trial and not letting Satan extinguish his light to others. I know he made an impact on those kids lives and am so glad he was still up to going despite his fall. He wore his hat to cover his wounds. He never wants to draw attention to himself like that. Anyways, it was a great day today!
Blessings to you all,

Lori and Eric

P.S. We are going to see Mercy Me and Bebo Norman tomorrow night with my parents and brother and sister and spouses and can not wait. It should be a great evening of worship!

Patients w/ALS NEED YOUR HELP!

2008-10-29T15:03:00.002-04:00

VIDEO ASKING FOR THE RELASE OF IPLEX...

http://www.youtube.com/v/Qx_7S0eNIZo

ARTICLE BY A FRIEND JAN...

Iplex for ALS/Motor Neuron Disease patients
For every ALS/MND patient around the world to have access to the drug Iplex
Positions:
ALS/MND patients have the right to choose their treatment
Iplex is currently unavailable due to corporate greed
Iplex stalling disease progression in 100 Italian ALS patients

Category:
Health - Diseases and Disease Research

Description:
ALS, ( Loug Gehrigs, Motor Neuron Disease) is neurodegenerative affecting cells in the brain that control essential muscle activity such as walking, breathing, swallowing & speaking. As these muscles aren't receiving messages from the brain they slowly die & waste away with death 2-3 yrs from diagnosis. The cause is unknown, there is no cure & the only approved drug 'Rilutek' offers 2-3 months extra life expectancy. Human (insulin like) growth factor (IGF-1) developed and approved in the USA to treat children with growth problems is proven to be neuro protective & promote regeneration of nerve cells. There has been several studies on IGF-1 to treat ALS with mixed results. 'Iplex' is IGF-1 w/ binding protein 3 (IGF-1BP3). Iplex was removed from the market in March 07 after its manufact. Insmed was sued for patent infringement by pharma. company Tercica/Gennetech. Before the settlement, 8 US PALS (patient with ALS) took Iplex for 3 months. No adverse side effects were seen & all recorded complete disease stabilization as well as improvement. . Main benefits were in swallowing, speech, breathing & weight gain. PAL Ben Byer (director of the doc. film 'Indestructible') whose diet consisted of pureed foods before Iplex was then able to eat steak and burgers. In Italy, prior to settlement, PALS sued their 'Ministry of Health' for access to IGF therapy. The settlement allowed Insmed to still supply Iplex in Italy. However it is not being run as a proper trial, rather an 'expanded access program' with around 100 PALS. ALS is a 'death sentence. The disease wastes away the body to paralysis, artificial respirators & feeding tubes but the mind of remains intact. PALS understand everything that is happening to them. Until this disease affects someone you care about you can’t imagine the devastation as you watch them deteriorating at such as pace. ALS is a rare disease with 35,000 people in USA, 1,400 people in Australia etc. Thus there is not the financial incentive for pharma. co’s to invest due to the small size market. There are research programs on ALS around the world but the time it takes from lab stage to approved treatment is so long that PALS now can’t wait. RIGHT NOW PALS in Italy are on Iplex SHOWING BENEFIT!. Iplex, is made from IGF-1 which is proven to be neuro protective & regenerative. It is APPROVED for use by the USA FDA to treat children with growth problems demonstrating a level of safety. This CAUSE is about getting no.s & support for PALS & their BASIC RIGHT to a treatment that could slow their demise. Please support us in pressuring Tercica/Gennetech & Insmed to make Iplex AVAILABLE to PALS.

My friends & family you have asked Lori & I how you can help...here's your chance, please write letters on my behalf insisting that Insmed immediately resolve their patent dispute and release IPLEX to all PALS. I have included the names & contact information as well as a sample letter that I sent out. I have talked to the 8-10 PALS/or their care givers that were on IPLEX before Insmed's lawsuit which they all overwelmingly confirmed that Iplex improved their symptoms & slowed down the disease. Coupled w/ the Italian governments suing Insmed for the access of Iplex for their 100 PALS the last several years and data from a neurologist in Italy confirming the efficacy of Iplex in their patients I have embarked on joining forces to gain access to this therapeutic. Please help us flood their emails and mailboxes with our requests for the release & access of Iplex.
Thanks so much for your help in this David vs. Goliath battle!

Love Eric & Lori

Dear Brothers and Sisters,

We ( Team IPLEX ) are humbly requesting help from any and all supporters . Please Review the Attachment that I have provided.
You can (cut and paste talking points from the attachment or you can just cut and paste the entire document as is ) send the same letter to each recipients -- just don't forget to change the address name and salutation

But Please Take Some Time, out a Help Our Cause . Remember if you write what letter per day for the next eight days you've covered all of the Ismed Top Brass.

Remember we need to emphasize that we are - Appealing for the release of IPLEX for the benefit of our family members, neighbors , brothers, sisters, fathers, mothers , best friends, etc. .

We (TEAM IPLEX ) Have Successfully Sent about 65-75 letters to all of the executives, board of directors, researchers, investor relation contacts , of each of the companies involved. But We Realize That 65-75 letters are simply Not Enough to Sway Anybody . Therefore we Really Need Your Help. If We Could Get Just 600-700 Letters, to Each of These Corporate Bigwigs , I Truly Believe That Things Would Start to Loosen up . What we're really aiming for is 7000 letters , but we'll be happy with 700 to each and every person below .

Thanks Team Iplex

INSMED:
Dr. Geoff Allan, PhD - president & CEO
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Steve Glover President Insmed Therapeutics
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Doug Farrar Vice President Insmed Therapeutics
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Kevin Tulley VP and Chief Financial Officer
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Glen Kelley, Vice president
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Anne Smith, PhD Director of Clinical Research
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Christie ONeal
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235
coneal@insmed.com

Investor Relations for Insmed
Brian Ritchie (I do not have his address in New York)
brian.ritchie@fd.com

SAMPLE LETTER I USED BELOW:

Christie O’Neal
Insmed, Inc.
8720 Stony Point Parkway Suite 200
Richmond, VA 23235

Dear Ms. O’Neal,

I am writing to request that you support - the release of IPLEX as a therapeutic for people suffering with ALS. Negotiations need to be initiated by all parties involved. This is an urgent plea to your moral consciousness so please do what ever it takes, to give myself & others an opportunity - the same opportunity your company has afforded the Italian government for their 100 patients suffering from this deadly disease.

Although there are many variables in this disease, there is only one constant -It Is Always Fatal –an average of two to five years following diagnosis. All of us are condemned to die, or worst, to watch those we love so dearly die, and just because people can't figure out how to turn a patent dispute into a win-win deal.

As you probably already know, ALS is the cruelest of diseases. As the disease progresses, its victims become trapped inside a body they no longer can control; unable to walk, talk, chew, swallow, eat, and eventually breathe. As you probably also know, there is no effective treatment. We (Team Iplex) believe your product; Iplex (IGFBP-3) is far ahead of the field, as a therapeutic tool, to slow progression.

Under a commonly used and legal process, many PALS, including myself, have had our physicians request the use of Iplex (for emergency use) directly from Insmed. We are always told that court proceedings and settlement terms forbid Insmed to deliver this Life Saving Therapy. WHAT? Doesn't there seem to be something fundamentally/ morally wrong with that statement? Insmed will always respond that (per court order), that their competitors make a suitable alternative called Increlex.

Ms. O’Neal, Increlex is not the same as Iplex, and has little, if any, efficacy against ALS, Increlex fails to produce the same results as Iplex for many reasons, including dosing, half life, specificity of action, etc. Simply put, Genentech/Tercica has manufactured an inferior product than IPLEX.

We implore of you Ms. O’Neal, as a woman of power and influence, please assist us in the timely release of Iplex to ALL PALS. Genentech, Tercica have ordered all of us (Pals) to an untimely and premature demise. But you can show us the way to win this battle, there are many amongst us that are doctors, lawyers, nurses, etc. that will definitely follow any trail that you leave. Just put yourself in my shoes, I’m only 38 years old. My wife and I have been married 13 years. We have two young children, what would you do if you had a very short hourglass and the sand was shifting very fast. Please Help, Please Negotiate.
Respectively,

Eric J. Fox
Veteran/PALS/US Citizen
Info@ericfox.us
616-457-5826

Never a dull moment... please pray

2008-10-27T20:21:00.003-04:00

Well we went from a really down day yesterday to God lifting us back up by the evening. Eric was not feeling well on Saturday night and didn't rest well despite a great football party on Saturday where our Spartans beat the Wolverines. Today, we were having a pretty good day until I left to go work at my brothers at 2 and got a call at 3 that Eric had fallen in the basement and may need stitches. Our visiting angel, Jan was here and we had our in house physical therapy worker here. They had descended the stairs fine and Eric walked ahead to the therapy table and his toe dropped and he tripped on his foot (common in ALS, but has not happened a lot to this point with Eric) He tried to catch himself on the wall but instead caught the corner of his eye/eyebrow on the ledge of the wall and split it open and then preceded to land on the kids duplo block castle with his knee and hit a chair on the way down. He was bleeding everywhere so I here and I am actually glad I didn't see all of that. Jan and Debbie handled things wonderfully despite the blood. I got home by 3:30 and we got him up and into the van and off to Zeeland hospital ER which got us right in and he was stitched up by 5:00. He scraped up his knee pretty good and had some duplo indents in his leg and unfortunately also sprained his ankle. He was frustrated at himself, but I really don't think there was anything he could have done at that point. This is the part that scares me a lot..the danger of falling and hurting himself. He was home in his chair with a chocalate shake from McDonalds by 6 and is resting in front of the TV watching football tonight with some ibuprofin and his faithful dog by his side. Tonight we were getting a meal from friends who ended up taking our kids and feeding them and bringing us the rest still warm. (Thank you Maranka's) Please pray that his eye heals with no infection and his ankle stays rested and heals quickly.

Our next bit of news, we have been working on since we told you about the handicap accessible home for sale in Grandville. We have been praying along with many of you about this home and have gone forward with purchasing this home and have been gettting everything in place to be sure we could purchase this home with the aid of the VA in place and negotiating with the sellers and we have an accepted offer on the home pending the VA inspection which is tomorrow at lunchtime. We have had tremendous peace about this house and everything has been falling into place and we are actually very excited about the home despite having to move to Grandville and finishing the basement. It is everything that Eric needs on one level with no steps and very wide doors and hallways and a walk in tile shower!! Accidents like today just assure me that we are doing the right thing with buying this home. His safety is so important and it would have taken until February at the earliest to renovate this home and not even close to what this house has safety and accessibility wise. God has blessed us tremendously!! We have really enjoyed getting to know the owners, Jon and Alisha who have a story of their own to share (http://www.carepages.com/ under AlishaMiddel if you are interested) They actually were able to purchase our Volvo which works well for transporting her wheelchair and their needs too. Please keep praying for God's hand to be upon the inspection and the closing of this new home.
Thank you for your prayers and support. We could not get through the day without your continuous prayers on our behalf!

In Christ who gives us strength,

Lori and Eric

More pictures of Boston

2008-10-21T21:34:00.001-04:00

On our way home again!

2008-10-21T21:11:00.004-04:00

We are on our way home and are stopped in Niagara Falls, NY tonight. We had a great trip and the ALS TDI research symposium was very informative. Eric is always researching about ALS on line and I really don’t know much about what researchers are doing for ALS and how they do it. We actually toured their lab on Sunday and then they took a group of us to dinner where we met some really great people, many who also have ALS. On Monday, we spent the whole day at the symposium where Dr’s presented their studies they are conducting with tons of information, most of which went way over my head but Eric and I both learned a few things and felt glad that we came. I think it gave Eric’s parents a better understanding of ALS as well. One thing we found interesting is that they call ALS a syndrome rather than a disease since most people with ALS are not the same as far as onset, age, life expectancy, symptoms etc. This is why ALS is so hard to cure, there is no known cause and there could be more than one cause for that matter! They are doing most of their studies with familial ALS which is genetic and accounts for about 10% of ALS cases ( they are saying it may be more like 20% now). One common thing that they are finding is that men younger than 40 who get ALS with onset in their limbs are more likely to live longer for whatever reason. This was encouraging to hear for us.
We were able to go to a couple more states last night and met our good friends, Rob and Danea who are living in New Hampshire for dinner. We headed out of Boston into New Hampshire and drove to the coast and up highway 1 which was incredible! The sun was just about setting and we got out by the ocean for some pictures. The waves were huge! It is always so amazing to think about how the United States is surrounded by the vast oceans that our Creator made. We had dinner in NH and Rob drove us up to Maine for coffee! Isn’t that cool! We had fun catching up with them and were excited to hear about a ministry they are part of! We will create a link to their website soon. We have been reminded by many people of the Veggietales song where they sing “we’ve never been to Boston in the fall” and I kept singing that in my head while we were there. Boston is very quaint but not very friendly. People, whether they are driving or walking down the street are on a mission and you had better not get in their way. We decided that we couldn’t live there but I got pretty good at driving in Boston after the first day or so. Eric was impressed. His parents were a little nervous in the back when I was taking pictures over my steering wheel of the city as we came over the bridge :0). We ate lunch at the original bar that they made the sitcom Cheers from which was quite tiny actually and Eric and his mom got stuck in the elevator.
On the way home this morning, Eric wanted to knock out a few more states so we drove south to Rhode Island and then over to Connecticut and back up through New York. Eric added five more states that he has never visited yet. He has less than 20 to go. Anyone up for another road trip? I am only interested in Hawaii at this point :).
Please keep us in your prayers tomorrow morning as we travel the rest of the way home. It is actually snowing tonight!! Can you believe that? We are planning to get up early and view the falls and then head home. We are excited to see Zach and Maddie and get some good rest again in our own bed. In Christ, Eric and Lori
P.S. the house showing on Saturday was a “no” but we have another showing on Wed. night so keep praying!

We made it to Boston!

2008-10-19T10:52:00.002-04:00

Some of you probably don't know we even left for Boston, but we are here! We left on Friday around 12 and picked up Eric's parents and drove until Buffalo, NY and spent the night before heading out on Sat to drive the other half. Eric's dad drove most of the way(thank you!) It was very beautiful seeing all of the leaves changing and all of the scenery along the way. We made it into Boston by 7pm after about an hour of traffic at the toll exit off of hwy 90 right up until we got to the hotel. We plan to go see a little of Boston today and then go to tour the lab at ALS TDI (which is why we came here)
We did have a house showing yesterday so at least the house was clean when we left. Our kids and the dog are staying with my parents in Holland this weekend (thank you!) We will update more before we head out on Tuesday and hope to have some pictures too.
Blessings to all of you!
Lori and Eric, Jim and Joan

Walk to defeat ALS today

2008-10-11T21:08:00.003-04:00

What a beautiful day we had today for the ALS walk! We had a great turnout and we sincerely appreciate all of you who were able to carve out a few hours from your Saturday to join us in supporting this great cause. I know many of you juggled it in between kids sports, etc. We especially want to thank Matt and Stephanie Kucinski, our team captains who put so much time and serious effort into getting people signed up, getting donations and keeping everyone up to date. It will be exciting to hear how much money the Fox Trotter team raised this year. Eric was interviewed again this year by Fox News and something will air tonight and tomorrow night at 10pm on Fox 17.
Have a great weekend. It's supposed to be in the 70's again tomorrow!

A prayer request for direction

2008-10-08T21:52:00.005-04:00

Well, a lot has happened since our update on Sunday. We have our Volvo listed on Craigs list and showed it to a very nice couple this past Sunday afternoon and got to talking with them about our house for sale and came to find out that they just listed their home for sale a few weeks ago and it is handicap accessible. Of course, my ears perked up and we talked some more about their house and ours. They are looking to get a more affordable home since she is in school and their high medical copays, etc. (we all can relate to this at some point or another). Our house was potentially what they were looking for so we both viewed eachothers homes Sunday eve. Their house has no step entrances and a bathroom with lots of room and an accessible tile shower. She is in a wheelchair due to her leg being amputated and her dad actually built their home for them. Anyways, they looked at our house with their parents last night and it appears that there are more rennovations than they want to do so our house will not suit them right now. We know that God is at work in how this has came about and really hoped that it would be as simple as us swapping houses! Wouldn't that just have been so great! and so God!
We still believe God is at work here and wondering just what He is up to. I want to share with you part of this couple's Care Page entry below highlighted in red. I read this the night we met them and she had posted it last week:

One BIG prayer request- and please do not take this as a "call for help" or a plead to feel sorry for us....but Jon and I have decided to put our new house up for sale. Financially, we are not doing the best. With me not working- (BTW- if anyone knows a connection for a nurse's aide job, please let me know!!). And jon's new job- health care expenses and just the simple costs of living are getting to be too much. We have the house up for sale- who knows what will happen, but God knows!! We are thinking of finding a cheaper, older home in Ottawa county (cheaper taxes) and renovating it to be handicap accessible. We'll see if our house sells on this lousy market though! Also our lease on our car is up and so we have decided to get an older used car- so we can have cheaper payments. It is hard to have to give up so much and try to surrender the worry to God- but i truly have been stressed to the max with school, my health, finances...etc. it is wearing me down. But i have to remember life is NOT about things!!! I'm just scared at what the unknown is about.... can we afford my healthcare??? leg costs??? With Jon's new job- our new insurance is not as good- so that has been hard!
...But God doesn't want us to worry- what good will it do? nothing!
Anyways- sorry to ramble on about the "negative"!! We really WILL make it with God on our side!Please just pray for us in this time. Thanks!!

So here is a recap of my post just an hour or so before we met this couple:

We have been doing some serious thinking and praying on what direction to go with our house and future needs. We have recently met with a few builders since our house has not sold to see what the feasiblity of adding on to this house would be. We have a builder coming back this Tuesday to draw up the plans so we can move forward. The house is still for sale until we can decide which direction to go. Please pray for God's direction on where He wants us to be and that everything would be very clear. Pray that God will guide us even to the right builders if the house should not sell in the next few weeks.

Some people would say that that is such a coincidence that you met that couple, but I just know that it was God and it was confirmed when I read that they had people praying and we had been asking for prayer for direction and I know my God hears our prayers and he answers them. Please continue to pray for God's direction for us this week! We still met with some builders last night as we had planned and they are ready to draw up some plans for some major rennovations to this house but Eric and I just don't have peace about moving forward in this direction. We also don't know that God is leading us to purchase this home since our house has not sold, it is not in our school district and the basement is not finished. I know God knows our every need. God knew that Moses needed a helper to free the Isrealites and he told Moses that his brother Aaron was already on his way to help. He knows everything!!! I know this may not seem like the same situation as the huge plan that God had for Moses' life but I am studying the life of Moses right now and it is just speaking so dear to my heart right now. God has a plan for all of us and He will equip us to follow his will for our lives. So again, we are asking you for prayer for clear direction and if it is God's will, to sell our house.

We will try to keep you posted with what God is doing!

Your friends in Christ,
Lori and Eric

P.S. Many of you have asked if you could just show up on Saturday for the ALS walk and you absolutely can! It is supposed to be a beautiful day so we hope to see you at John Ball Zoo this Saturday btwn 9 and 10 with the walk starting at 10!

The pictures above were taken by my Dad at Holland State Park about a month ago. Thanks Dad!

What's going on with the Fox Family?

2008-10-05T15:31:00.004-04:00

Well, for those of you who have been asking for an update, it has only been 10 days since our last and it seems like only a day because we have been quite busy.
We have had our ups and downs over the last few weeks and I am grateful to say that we are on an up right now. When we are down, it is usually purely emotional for us as the frustrations of the disease sink in for Eric and the realities sink in for me. When Eric is down, I usually follow suit and vice versa. We keep eachother lifted up when we can encourage one another or find joy in our circumstances. Sometimes Satan wants to get his foot in our lives and he tells us that we can't get through this and we should just live in frustration and fear of the unknown, but our God doesn't say that in his Word! He says in Hebrews 13:5-6 says ..."Never will I leave you; never will I forsake you." So we say with confidence, "The Lord is my helper; I will not be afraid. What can man do to me.

We know that God is always with us and there is no reason to fear.
We have been doing some serious thinking and praying on what direction to go with our house and future needs. We have recently met with a few builders since our house has not sold to see what the feasiblity of adding on to this house would be. We have a builder coming back this Tuesday to draw up the plans so we can move forward. The house is still for sale until we can decide which direction to go. Please pray for God's direction on where He wants us to be and that everything would be very clear. Pray that God will guide us even to the right builders if the house should not sell in the next few weeks.

Please keep my sister Kristi and her family in your prayers too. You can check her blog at the right of the screen for updates on their family. Our niece, Ashley wrote Eric a poem we wanted to share with you:

Uncle Eric, Uncle Eric, I feel so bad

Trust in God with all you have.

God will be with you forever and ever

So I believe that you will get better and better.

I will pray for you every day

And know that you will be okay.

Uncle Eric, Uncle Eric, I feel so bad

Trust in God

With all you have!

Thank you Ashley for your prayers and encouragement!

Our walk is next weekend on October 11 and we are looking forward to seeing all of you who are able to join us at John Ball Zoo. If you can't make it but want to sponsor our family, you can go to: http://web.alsa.org/goto/foxfamily or http://www.alsa.org/ for more info about the walk.

We are planning a trip to Boston to go to an ALS forum on research through ALS/TDI and are driving our van with Eric's parents on October 17th. It should be a pretty drive and we have never been to Boston so it will check off a state or two on Eric's list of States he has never been to.

Zach has been busy with Football and has his last game this Saturday right after the walk at 11:30 on the Jenison Football field. Maddie has been having fun with school every afternoon and really enjoys learning and her time with friends.

Our church is currently undergoing building rennovations so our next few services will be held outside or at the Jenison High School. Today was a beautiful fall day (despite the bees) and we met on the front lawn for our service. It was great to worship our God outdoors with the body of Christ! I hope you all are having a blessed weekend and will make it a great week to give thanks to our God for all He has given us. We are so blessed!

In Christ,

Lori and Eric Fox

2008-09-25T11:34:00.002-04:00

hi to you all.

this entry is from Eric's mom. Eric's dad and I took Eric to Detroit on Wed. to talk on the radio station,WMUZ on the Bob Douca show. they were told they had five minuts to talk and that is what they,got. Eric was asked what his first signs were that he had ALS As you all know it started in his right arm, from there it went to his left arm them to his legs,neck. He has the most amazing shine on his face all the time.

After the radieo show we met with Amy Whipple who is with als tdi, Midwest Regional, she is the director for the mid west. what amazing lady, she had so much information for Eric.

Eric asked me to do this and I have no idea what to say. I was glad we could spend the time with Eric.

As you all know we have three chrilden and we are so proud of all of them.

VICTORY THIS WEEK!

2008-09-25T11:23:00.002-04:00

Victory! Senate Passes the ALS Registry Act, the United States Senate passed the ALS Registry Act!! Thanks to your outreach, we have just won a huge victory for people with ALS and their families across the country. We have made a difference! The bill now heads to the House, which is expected to quickly agree to the Senate version, which included technical changes made during the legislative process. We will keep you updated as the bill moves toward enactment into law. Also, It's Official!!!VA to Grant Benefits to All Veterans with ALS
We did it! Tomorrow, September 23, the Veterans Administration will publish regulations officially establishing ALS as a service connected disease! Effective immediately, all veterans with ALS will now have access to the highest level of VA benefits without having to prove that their disease was caused by service in the military. This is a tremendous victory for all veterans and is the culmination of years of work by The Association, our VA Issue Team and veterans across the country. It is clear that our outreach - testifying before Congress, partnering with the VA, advancing research to identify the connections between ALS and military service and educating the public about this issue - have paid off. The Association has championed legislation (H.R. 5454) that would have established ALS as a service connected disease. However, thanks to our efforts at Advocacy Day and throughout the year, this legislation no longer is needed! ALL Veterans with ALS Eligible for Benefits This new policy means that ALL veterans with ALS will receive the benefits they need, deserve and have earned. Importantly, it is broad in scope and applies to all veterans diagnosed with ALS regardless of when or where they served and regardless of when they were diagnosed with the disease following service in the military. A summary of the regulation can be found here. The text of the regulation is available here.Tomorrow and in the coming days, The ALS Association will post additional information about the regulation, including answers to frequently asked questions, an overview of benefits available to veterans with ALS, as well as guidance veterans can use to obtain service connected veterans benefits.The ALS Association would like to thank VA Secretary James Peake, Congressman Henry Brown (R-SC) and Senator Lindsey Graham (R-SC) for their efforts to work with us and the ALS community in support of veterans across the country. We also would like to thank all veterans with ALS whose outreach to Congress has helped make this important benefit possible.Additional information will be available on our website on September 23. If you have any questions, please do not hesitate to contact the Advocacy Department at advocacy@alsa-national.org.
Congratulations to everyone!

A good belly laugh

2008-09-17T21:57:00.002-04:00

Sorry for being so long between updates. Eric and the other 9 men arrived safely home on Sunday around 4:00 pm after a very long drive home from Nebraska. He will write about the trip soon. He had an incredible time of bonding with these guys and is so glad he went. The time went by fast for us here at home since we were sleeping most of the time they were gone. Zach had his first football game on Saturday in the continuous rain which I video taped under my umbrella for Eric to see. Their team "the Gators" won and Zach didn't even care that he was soaked from head to toe. It was a great rainy Saturday stomping in puddles. This week has been pretty steadily busy with Dr. appointments and home visits. We get Eric's new electric wheelchair tomorrow morning and will trade it for the loaner we currently have. It is a Permobil C300 and can do just about anything.
Our daughter Madison has been saying things lately that have made us bust up laughing. She is learning that it is good to make people laugh and we are not laughing at her in jest, but because she makes us smile. Here are a few of her latest. I have been getting these little holes in my shirts from wearing them out in the wash and she said "maybe you are getting too big for your clothes" Eric just busted a gut, me not so much. It reminded me of the time when Zach was little and he asked my grandma why she had all the cracks in her lips and my grandpa couldn't stop laughing. Then today we were talking about marriage and I told her that I married my boyfriend and she said "and then you married daddy" Even the table next to us at Wendy's was laughing at that. Then when I opened my sour cream for my potato and squirted it out, it shot out the top and sprayed my neck and front ot my shirt and we all started laughing uncontrollably. We went to the mall tonight and got the kids Build a Bear's with Eric's voice in them and had a lot of fun just hanging out as a family. Hope you are all having a great week!
Blessings,
Lori

P.S. a few of you have been wondering if I am sleeping better on our new bed and I adjusted to the new bed in less than a week and we love it! Just wish I could sleep longer!! Zach gets up for school now at 6:30 a.m!

"I LOVE A GOOD CRY"

2008-09-09T23:12:00.005-04:00

It has been a while since I updated the blog, Lori has been keeping it updated the best she can. Thank you for taking time to read about what we are going through it is not easy, but your love and prayers are felt & appreciated. We have been truly blessed in so many ways during this season of our lives, but many fighting this disease are not as fortunate. Please pray for all those who are suffering from this awful disease. We a relatively relaxing week last week adjusting to the school schedule and football practices. Last Saturday night was amazing night. I was given the opportunity to speak and share my faith in an auditorium at Aquinas College before the Tuesdays with Morrie play. The play was so well done and was about Professor Morrie Schwartz battle with ALS and his relationship with Mitch Albom, one of his students. Many of you have read the book or seen the movie, but Lori and I had never done either. What made it special was having both of our parents there along with some of our friends to share the powerfully emotional experience with us. It was a chance for us all to release our tears together about this horrible reality we face and as Morrie says “I love a good cry”.
One thing that I found missing from his life was the definite presence of Christ in his life. He was actually an agnostic at the beginning of the play. He referenced God and angels, but not what Christ did for his eternal security. We have hope only in Christ and his promises for all of us. One thing I really took away from the play among many was the quote “When I am taking, I feel like I’m dying but when I give of myself, I feel like I am living”. This is how I feel. I cannot sit back and let this disease take my life and only sit back and take from everyone. I need to have purpose by giving to others and sharing hope and the inspiration that only comes from God in ways that He has equipped me to feel like I have something to live for. The play was to benefit the ALS Association and there was a silent auction beforehand. They raised over 5,000 last we heard. We were outbid on a Michigan State basket with a signed basketball we were trying to get for Zach and after the play, this couple came up to us and said they wanted us to have it! What a blessing for them to do that and they don’t even know us. We were overwhelmed with gratitude. Another God moment was meeting the author of the book Lori is reading (Shelly Beach of the caregiver devotional called, Precious Lord, Take my Hand) Lori has quoted some of her late night readings from her book on the blog. We were able to meet the cast (only two people as pictured above) and tell them what a great job they did. Overall, a wonderful evening. Thank you to the Klumpps for watching our kids all night.

Prayer Requests are for me and the 9 men riding in an RV to Nebraska on Friday night straight through to see a Huskers football game and then returning home Sunday. Pray for safe travel and rest and a great time of fellowship. Lori thinks I am a little nuts but she is looking forward to some down time from caregiving and thrilled that the guys are willing to help me out.

Also, we had a meeting with our rep for the VA specially adapted housing grant we got who was an awesome Christian man. After meeting with him for six hours on Monday, we were overloaded with information and very strict criteria that needs to be met to get approval by Cleveland which takes a minimum of four to six months to get the green light. Please pray that God will give us wisdom in how to proceed at this point. Please pray that our house would sell soon so the decisions and timing will be easier to make. As this information has sunk in, we are feeling very discouraged about the grant we were so excited about last week. We know God still has a plan for us and we want to follow His will so pray that we will hear His voice loud and clear.

If anyone would like to walk with us this year in the Walk to D’Feet ALS on October 11th at John Ball Zoo, please contact Matt or Stephanie Kucinski at mkucinski@hotmail.com or 616-307-7429.

Have a blessed week.

Eric

School has begun!

2008-09-02T21:40:00.002-04:00

We had our first day of school today and the kids did great! One small error on the bus stop for Zach so he missed his bus and I drove him, but other than that they had a great first day. It sure was hot though (in the 90's) and no A/C at school. Looking forward to cooler weather again.
We had a great weekend and went to Holland State Park and did family pictures with my dad (a very talented, retired photographer) We also did the kids pictures and I can't wait to see them! It was a perfect evening with a beautiful sunset while the kids swam in Lake MI (70 degrees).
Monday we were asked to do an interview on the Jerry Lewis MDA telethon at Celebration Cinema (MDA runs the ALS clinic that Eric goes to and has a division for ALS). Besides going to the wrong theatre, it was very cool to be a part of what they are doing to raise money for 40 neuromuscular diseases for support for patients and research and sending kids to camp, etc. The kids were great too! We were interviewed by Wood TV 8's Miranda and she could not have been nicer.
This week we are hoping to get adjusted to our new schedules as many of you are.
Blessings to all of you!
Lori and Eric

Save the date for the Walk to d'feet ALS on October 11th. More details to follow!

Praise God from whom all blessings flow!!

2008-08-28T22:20:00.003-04:00

We had a wonderful day today full of good news! It started at 8:30 when we got a call from the VA office in Detroit to let us know that our specially adapted housing grant has been approved!!! Eric and I just cried when we got off the phone and praised our great God! We have been working on this for so long and praying for this to be approved with many of you. Prayer works and God is so good to us!! This will allow us to us to build or put the grant towards the purchase of a home that will be better suited for Eric's wheelchair. We are leaning towards purchasing a home due to how long it would take to build at this point and all of the major decisions that go along with that. We have several houses in mind and will be praying for discernment on choosing the right one.

We also got a call that our lift van has been inspected in Battle Creek and we could pick it up today! We drove it home this afternoon and it is so incredibly nice! Eric can sit right beside me up front with his wheelchair because the front seat comes out. We have lots to learn about using the van but can't wait to take it out with Eric's loaner chair. This will help us looking at houses too with the chair along.

We also had Wilma, a sweet woman in her seventies come out today from Visiting Angels to be our new caregiver twice a week. She helped me get the house ready today for a showing and she was a huge help keeping up with our hectic paced day. We are so blessed! I read my daily devotion tonight and it was from Ecclesiastes 5 and Charles Stanley's comment was "God allows certain amounts of wealth and possessions to come into our hands so that we might use them to bless others. We are to be a funnel for God's blessings, not a container in which to hoard them." We are excited to share God's blessings our family has received and be able to bless others. Everything we have and everything we are given comes from Him!
Thank you so much for your prayers, keep praying that Eric's progression would be slow and for a cure for ALS!

Have a great Holiday weekend! We plan to stick around here and wind down for school next week!
Blessings!
Lori and Eric

Celebrating 13 years of marriage!

2008-08-27T03:46:00.003-04:00

We just celebrated our 13th wedding anniversary yesterday. Eric and I met almost exactly 18 years ago at Michigan State University and I told my roommate that I had met the man I was going to marry. Five years later, we were married. I put some pictures from our wedding above to show you how young (and skinny) we were. Our wedding day feels like it was yesterday and it was one of the best days of my life. I have actually known Eric half of my life now.

We actually celebrated our anniversary last Friday by going to dinner with friends to Johhny Carino's to have steak since Eric finished his 28 day detox regimen last Thursday. It was very good food! The rest of our weekend was pretty quiet, mostly getting ready for an open house on Sunday. We got a new mattress on Saturday to help Eric sleep better. He has been struggling with sleep for quite a while now due to not being able to get comfortable so we picked out a quite firm mattress that is quite high off the ground too which is easier for him to get in and out of. We can add an adjustable base if we like sometime or get a wedge pillow for under the sheets if Eric needs to sleep elevated. The very first night on the mattress, Eric slept like a baby and has been since. This is hugely important because good rest gives him better energy for the day just as it does for everyone, but this is even more important for people with ALS because of the fatigue and more energy being exerted during the day. I am having a little harder time adjusting to our new mattress. Our old mattress was very soft and broken in and I am not quite used to the change hence the late blog entry. When I wake up, my mind starts thinking of my to do list or things like selling the house and where we will move to, etc.

We did have 7 families through on our open house with one who came back tonight who likes the house but needs to sell theirs. We also have another showing on Thursday night so it is picking up again and we are praying that the right buyer will be able to buy our home soon.

Other good news is despite losing another Angel Care worker last week, we had an interview yesterday with Visiting Angels and they hope to have someone out here this Friday to start so please pray that this new company and person would be a good fit for us.
Zach started football practice this week and is so excited to be on the team Gators this year with some of his best buddies. He is switching teams this year to help us with rides to all of the practices and he couldn't be happier how it turned out with all the kids he knows on his team. They are pumped up! We need to get some new gear tomorrow because the boy just shot up last year and keeps growing as does Maddie.
They are both excited to start school next Tuesday and we hope the transition goes smoothly as it is always hard as most of you know to move into earlier bed times and getting up and homework and sports, etc.
Many of you have offered to help us this past week and we really appreciate it. I promise I will try to ask for help when we really need it. Some days I don't know I need it until right at the moment I need it so I will try to plan ahead for things as I see them coming. My hope is that we will be moving soon and then we will need lots of help!
I hope you are all doing well and feeling blessed. I know we feel blessed every day. Eric wakes up every morning and says "another day to spend together" We say this all the time, but every day is truly a gift so make the most of today and be blessed!
In Him,
Lori