The last post

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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