Today we had a visit with Cole’s Neurologist. Life has been difficult for him of late and by extension, our whole family as well.
He has been having muscle spasms–he has basically lost the ability to dress or undress himself–and getting in and out of the bathtub has become an unbelievable ordeal.
And he is angry.
Can you blame him? Even though it seems we have to defuse his anger and try to calm him down constantly, I understand. If I was in his shoes I would be angry too.
He normally puts on a game face and smiles for everybody he meets at church or wherever, but at home he hurts.
And so we met with the doctor today looking for a change of medication, something that would help him have a better quality of life. We left with a new med and a heavier heart. Intellectually, I think we knew this downward spiral he has been on wasn’t going to get much better. Emotionally we were not prepared for what the doctor said next.
Back when Cole’s diagnosis was Cerebral Palsy we always knew his life expectancy to be that of any other person. But with this mishmash of Leukodystrophy/ Mitochondria disease, everything has changed–today we heard a doctor say that his condition was progressive and we were looking at him only living to his mid twenties.
Cole turned 20 back in November.
Obviously, God is still in control and we trust Him.
We trust Him, covet your prayers, and are determined to stay the course and finish strong.
Blessings & Love,
Les, Jr.
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lesjr
You have our prayers for Cole, you, Karen and your family as you continue to travel on this journey.
I love you all. Our heart hurts with you.
Les, I’m so sorry! We will be in prayer for you and your family!
Les, WOW!!! How sorry I am to hear all this…you have a beautiful loving family all due to you and Karen….Keeping all of you in our prayers….we love y’all….
Praying for you and for Cole!
Love,
Linda
Praying for you and your family Bro!
Oh, Les . . .
For Cole, the finish WILL be strong. But, I can understand how sad you must be. I lost my little brother, Mark, at barely 8 years old to brain cancer (I was in 8th grade – just turned 14) in 1959. But, his loss to me and our family has never ceased to sadden us. Even my mom, now 88.
I have been and will continue to pray for you all. May God richly bless Cole and all of you in this journey of his Homeward Bound.
Dee
Our sweet Cole. I hate that he hurts. I hate that he is frustrated. I hate that he suffers. I hate that you and Karen suffer. I hate that he doesn’t understand and that we don’t either. But I do know one thing. He has and always will positively affect the lives of many! God uses Cole in ways that we may never know.
I love you guys and will be praying for you daily!
Les,
I know I commented on Facebook but I had to come back and say that I’d like you to pass on to Cole how proud Mike and I are of him and how we miss him. We talk about you guys regularly up here in GA; how we are so blessed to know Cole and how he’s such an encouragement to everyone. I can’t imagine the feeling of leaving with that news today, nor the wrestling you must be doing with God right now, but know that we’re here with you guys in spirit if not in body. We love you all!
Thanks all… we feel your love and God’s too!
Give Cole a big hug from me. Give yourselves a big hug from me. Wish I were there to help on this journey with you. But we can pray from here and will be. Miss all of you. Words are not much right now… just know we’re there in heart.
I’m sorry for the pain you are all going through! You are in my thoughts and prayers!
My heart is so heavy and sad for the pain and sadness I know you and Karen are feeling, but I am especially sad for the physical pain and frustration Cole is feeling. No parent ever wants to see their precious God given child suffer. Amy is so right…..he does not understand the why and neither do any of us. Amy and Andi were both so right in that God has used Cole and continues to use him in amazing ways to influence and encourage others. I always feel that I am in the presence of Angels when I am by Cole’s side. I know too that you have in the past wrestled with God over the why, Someday we will all know the why. I do not always understand God’s plan….just know He has one. I want to tell you that you are not alone and to be strong and courageous and do not be afraid, but I also know that all the well wishes will not ease your pain at this time. As always dearest friend and brother, you and your family are so very close to me in thought and prayer. I praise God and thank Him for Cole. I plead with God to ease His suffering. And for you and Karen, I pray that God.s peace and presence be your deepest comfort and your certain hope. I love you all!
I will be praying for you.
I will keep you in my thoughts and prayers.
God bless your family!
You know better than most that God’s ways can seem very strange to those of us who are still living in this shell of flesh in a world that experiences this kind of pain and stress. As others have said, you are very close in our thoughts and prayers. This is one of those “Job” things and for him God simply reminded him who put the stars in the sky and raised the mountains from level ground. You Are In Good Hands!
With Love, Respect & Appreciation
Mark
Les, please know that we are thinking about you guys and praying for you all. I can’t imagine what this is doing to all of you. Words are never enough and can’t express adequately what we want to convey to you and Karen and Cole and the rest of your family. Long distance love to you all.
Brad
Les, don’t know if you will remember me, but know you remember my daughter, Andi Edwards. I have put you, Karen and Cole on the prayer list here at Bayside Church of Christ (formerly Central Church of Christ) in Virginia Beach. Friends who remember you, Bartletts, Dennys, Reaves, and Jim Moore will be praying along with the rest of us at the congregation for you and your family. Cole has been a blessing to so many I know this from the things Mike and Andi have told me. Just one more proof that God uses us all, to do his work, if we will let him. May God grant you and Karen strength, on a daily basis, to walk the road that is ahead for you and Cole.
In Him,
Jenny Johnson
Adding my voice to the chorus of prayers going up on your behalf. -bill
Les, words are a small comfort to you right now but knowing that many prayers are going up for the whole family should be a strength for you. We’re so sorry to hear of this news but only God knows what the future holds for Cole. We will be watching the website for future news and hope it will be good news and things are going better for all of you. Love you!
Your family is in our prayers. Miss you guys.
Our prayers are with you and the family. We can empathize some because one of our neighbor next door’s son has cerebral palsy and we know the frustrations they experience every day. But we love Dakota and he is a very special part of our church family. May the Lord give you grace and strength for the days ahead.