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Thank you for checking out our website/blog. By journaling and updating this website we will attempt to keep friends and family up to date on what is going on inside our lives. Living with a terminal illness (ALS) and demonstrating how God is working in our lives to bring Him glory during this trial. We appreciate your gracious prayers and support during this season of our lives! We Love You All So Much!



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Thursday, May 6, 2010

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

19 comments:

Friberg Clan said...

Lori~I so thank you for sharing your heart...God is so good! I have been blessed by Eric's story, by your personal testimony and by knowing your incredible kids. You live out the love that God has for us every minute, it shows on your face and in your smile! I continue to lift you, Zach and Maddie up in prayer! Your sister in Christ~Demetria

Kerry Siereveld said...

God is good Lori! We've been thinking about you and praying for your family!

Anonymous said...

I am lurker posting my first post...Praise God for this journey! I am in awe at the road your family has traveled. What a testament to the fact that God ALWAYS has our best interests at heart. That he has a plan for us to prosper, a hope, and a future and not harm us. Glory be to God in the highest!
Julie
Julie

Stephanie said...

Lori, thank you for sharing this with all of us. I love hearing how God has worked in all of this. We know He is sovereign and everything works according to His plan, but it's so hard to see that right away. I think many struggled with that. How amazing is our God to reveal all of this to you, and to give you His unexplainable peace. I praise Him with you. Thank you for sharing your heart. We love you very much!

Kelly Campbell said...

that was beautiful as are you....you are a strong woman whose faith is to be admired. You as well have touched many lives and I am looking forward to hearing more of how god revealed himself in the days after....
love kelly c.

kim said...

Oh Lori - I'm sitting here with tears streaming down my face reading this recent post. Thank you for sharing your heart, your emotions and your faith with us - you are truly an inspiration and a testimony to our Lord. Thank you for sharing Eric's life and struggle with ALS with us - his testimony is amazing and points directly to God. I can just hear God saying "Well done, good and faithful servent." I'm continuing to pray for you, Zach and Maddie as you find a new way of "normal" in the days, weeks and months ahead. In Christ, Kim Theeuwes

anne said...

Thanks for sharing, Lori!! Steve's Mom was @ Trillium Woods in BC her last few days here with us. It's a beautiful facility and she had great care there. I'm so thankful that God is giving you His amazing peace. I recently ended a Beth Moore study on Revelation and what a joy to know that the last enemy is Death and even Death will one day be defeated! Looking forward to eternity, just as you are! Love ya!

Kimberly Canada said...

As much joy as there is knowing Eric is no longer in pain, I am sure your heart is broken that your sweet husband is gone. I am amazed at the responsibility you took on with love in caring for your husband's physical needs, yes, only with God's help. Your children and you are in my thought, even though we don't know each other. You are loved and thought of from a sister in Christ in Canada. Kimberly

Wayne said...

Lori,

I am glad that you are depending on God during this time. You do not mourn like those who have no hope. Christians have a great future.

It is good to see how God is working in the details of your past weeks. His mercies are new every day.

I want to wish you Happy Mothers Day.

Wayne Essink

Cyndi Davis said...

Lori, though your outer beauty is obvious, your inner beauty shines through like an ENORMOUS beacon in the night! You are an exquisite example of the vows you took with your husband; to have and to hold in sickness and in health, till death parts you (temporarily only). You've shouldered more than most could ever have handled were they in your shoes. All for the love of your husband, and what a witness for your children to see you demonstrate your love for Eric in such a selfless and caring way! They will carry that in their hearts forever! God bless you!

ingraffia said...

Lori you are so encouraging! Thanks for continuing to share what God is doing in and through you and the children! You life is an incredible testimony. I am always so encouraged to see your faith displayed through what you have gone through. You have been and will continue to daily be a part of our talks with Jesus! May your life along with Zach and Maddie's always be lives that exist to glorify the One who is always with you! We love you...
-the Ingraffia's (Heather)

Cassie said...

Lori,
I know we dont know each other but my heart goes out to you. My dad, Phil Thompson, passed away on Tuesday (May 4) from ALS. He was also at Trillium Woods. This isnt an easy road to walk but knowing there are other people out there experiencing the same things makes it a little less lonely. I am praying for continued peace over you and your family. God is so good to pour that peace out on us. Thank you for sharing your journey. My dad and Eric are WALKING around in heaven with the angels now. No more feeling trapped, no more pain, no more ALS. Although I miss my dad, I am so grateful that he is free. Thank you again for sharing Lori.

Cassie Thompson
cthompson@grcity.us

Joann said...

Much love and many prayers from Joann

Clarkers said...

Lori, I wanted to share this verse with you because it reminded me of Eric. "I glorified you on earth by completing down to the last detail you assigned me to do." John 17:4 Your family has touched so many people through this blog... thank you so much for that! Continuing to pray for you all!! Leslie

Amanda said...

This is the most beautiful post. You can physically see your point of view in such a devastating situation shift, in a matter of days you have grasped a life experience some never will. I am in awe of you. I am so sorry for your loss.

Courtney said...

I just saw your blog today and am so touched. I want to spend more time reading and learning about your journey. My Mom passed away from ALS in 2007 and I have such a heart for people and families who have faced this disease. I kept a blog about her journey (www.kathysalsblog.com).
Many prayers of peace to you during this difficult time. Thank you for sharing what is on your heart.

Anonymous said...

Lori, Zach & Maddie -
I was a childhood friend of Eric's (we were next-door neighbors of his Grandma Frances Fox). I was so glad to be able to reconnect with Eric in the last year. What an inspiration he was!!! He was always smiling as a kid, and it seems like he smiled through his ALS. We had been so busy over the last month and a half that I hadn't checked your blog in some time and when my mom called me this morning and told me that Eric had gone home, I was grieved, but also so happy that he was home with Jesus and whole again. I will be praying for you and the kids (I lost my dad when I was nine and know how hard it is) to live a full and joyful life in the Lord. Sue Schneider-Glover

Tacoma Barry said...

Hi Lori, I'm so sorry for your lost. You, Eric, and your children have been an inspiration to me from before my official diag.

Thank you for being a friend to me & my wife, and calling her at a time when we first learned the hard truth.
I will try to stay in touch.

Bless you! Barry Mangan, Tacoma, WA

Jen said...

I can hardly see to write this...this entry really moved me. My mom passed away 8 years ago. I had moved to another city, having recently graduated from university and started a new job. There had been many ups and downs with her illness (cancer) and it had looked as though she was at the end many times....and then would bounce back. The last time we spoke, she said that she wished I were there. And that she loved me. I told her that I loved her too....she was gone in a matter of days. I have felt much regret about not being there with her at that time, but I didn't believe that it was the end, after so many recoveries. And yet, like you, I've felt God's grace many times since, reassuring me that she is at peace. There has even been at least one incident where I felt her presence, as clearly as if she had been with me on this earth.

I wish you continued strength, Lori - you really do inspire me.

Family is FOREVER

Family is FOREVER