Fear Not

When I look at him, it’s so hard for me to see anything but his ever changing body. The body that is fighting so hard to keep up with his unstoppable spirit.

It’s so noticeable when he gets out of the shower. His scars from the surgery are evident from his toes to his groin, his back getting more crooked by the month (another surgery not far in our future for that) and his hands that he clenches more now then ever. It’s hard not to see it. Although I try often to express my gratitude for the opportunity of gene therapy, which has undoubtedly saved his life, the fact remains, that we have to sit back and watch his body change before our eyes without much we can do to stop it. It is excruciatingly painful.

The decision to let Eli have surgery almost two years ago, was one of the toughest decisions in my life. Hut was all in, Eli was all in, but it took me months to agree with them. Indecision, I find, is worse than making a wrong decision, because it eats you up, and is a thief of opportunity, so eventually I was also all in.

I had such high hopes for Eli, and what breaks my heart is, Eli had even higher hopes than I did.

He wanted to walk on his own, go up the Rocky steps without a walker, he wanted to play sports. Although much of what he dreamed, I knew probably would not happen, it didn’t matter, because he BELIEVED! He had the faith of a child, he believed God would answer his prayer and he saw himself doing things. These things alone are what helped me agree to the 8 straight hours of operations. HE BELIEVED!

I never wanted to not believe with him, and to be honest, his belief made me have hope, and also made me ponder the idea that miracles like this could still happen!

Our doctor, who saved their life, Dr. Biffi, the pioneer for gene therapy for MLD, was always there to answer any question I had, and she was always honest with her answers. So, when I emailed her about the possibility of the surgery for Eli, she responded with honesty. She responded that she thought it held great possibility, but it would be a lot on his body. She had worries, but they were never mine. I was more concerned about the nerves and him never walking again, while she was never concerned about that. She was worried about the muscles, the atrophy, being unable to bare weight for months and never get that muscle back. She is beyond intelligent, so her words weighed on me. Ultimately it was Eli who made the decision, so we went forward with the surgery.

For the last year I have spent more time than I care to admit dwelling on whether it was the right decision. I cry to Hut when I see him struggling, and I have screamed out to God when I see his legs bending back the way they used to be, knees knocking with every step because it’s just easier and quicker for him to walk the way his brain is used to walking. I didn’t know if I would ever forgive myself for not listening more to the real possibility that it just might not be what we had hoped. Maybe I did listen, but just wanted to believe in what Eli believed in… miracles.

As I opened up Facebook today and looked at the memories, I scrolled down and I saw one from four years ago. Immediately, I could hear my own words of comfort to myself as I realized that it was now ok to let go of some of that anger that I had at myself about his surgery. It saw a video of Eli walking, and as painful as it has been wondering if we made the right decision, it was even more painful watching the video.

We forget things sometimes, especially when its not in front of us every day, but when I saw the video, it all rushed back to me. It wasn’t just his legs that were slowly becoming deformed, but it was his feet too. He walked on the side of his feet so bad that we used to wonder daily how he did it. Eli has been determined since birth and I assume that is the only way he continued… pure determination. Today I saw one of the reasons we allowed him to make that decision. Walking on the sides of his feet was simply not going to be sustainable for much longer. We had to take the chance, before there was no going back. Watching the video made me remember the daily pain that he had in his feet and legs with us wondering how much longer he could possibly do this.

Eli doesn’t suffer much from pain right now, which we are so grateful for. He gets angry and sad at the things he can’t do anymore, but we deal with that as it comes. He still has the never give up attitude and a spirit that continues to make us better people every day.

He knows one day he will be healed from this disease, even if it’s not while on earth, and his faith never waivers. He believes wholeheartedly in God and also still believes in miracles. I will never try to sway him any other way. His faith strengthens my faith, and I don’t know what I would do if he didn’t believe that this was all part of a greater purpose.

I hope after seeing this video today, I can feel that we DID provide him with the best opportunity for more time on his feet and more independence than he would have had without.

I hate this disease with a passion and I will never be ok, or never understand why, but now I can start to forgive myself, because making life or death and life changing decisions for your child is not something that I would wish on anyone. We are doing the best we can, one day at a time!

2020

~ by Rebecca on January 12, 2024.

Posted in Along the way, Back to life and living, Diagnosed, Life after diagnosis, living, My journey, the ride of my life
Tags: acceptance, changes, day by day, eli and ella, Eli and Ellas Prayer Warriors, Enjoythemoment, family, Fear, gene therapy, God, gratitude, hard things, Hero, hope, Indecision, journey, joy, learning, life, Love, memories, metachromatic leukodystrophy, MLD, my four warriors, never give up, rare disease, sorrow, special needs, special needs parenting, strength, tough decisions, warriors, writing