The gift of conformity

When I saw his knees yesterday as I was helping him in the shower I couldn’t help notice how large his kneecaps are and how they protrude out over his slender legs. The knobbiness is hard not to notice, along with the slight curve that is now starting going down his back. As he sits in the shower I see his toes and how they are growing now curved over the other ones, I see the bones of his collar bones on the top of his shoulder and how they protrude to a point where it looks like they could hurt you. The boys said he looks like a dinosaur. His hips stick out so far past his butt that it’s hard to look at without complete wonder of how he even stands for a moment. Sometimes I have to look away because the pain is so great that I just can’t stand it. Yet, he is perfect…he is happy and he is more complete than most of us. His body has no bearing on his spirit that is stronger and more beautiful than I could dream of.

I don’t know how parents of kids with disease like MLD do it. How can one watch their child who once had a perfect little functioning body slowly have that body change right in front of your eyes without being able to do anything about it. It is truly torturous.

After 7+ years, I still haven’t figured out how to accept what is happening… I haven’t figured out how to stop being sad at seeing the changes in their precious bodies and I still haven’t found a way to believe this is all part of some plan that will work together for goodness.

Maybe I am just more vocal than most, maybe I just can’t pretend anymore but God I wish my strength was like others. I wish I had half the strength that some people think I have. The truth is, I don’t. Seven years and I’m probably worse now than at diagnosis. Maybe because I HAD to be strong then… we had a long hard road ahead of us and now…Now it’s just living …which can be just as scary.

What comes next if not another way to stop this disease? Settling into life as we know it is what comes next. I’m learning that it’s not as simple as I had hoped. To simply live can be challenging… especially in a situation like ours because you tend to be waiting for the other foot to drop. You know the potential of what can be waiting around the corner and the anticipatory anxiety of that is not fun. My God! living should be easier than this. Maybe it is easier and I’m sure I’m right when I say that I am just complicating it. I am my own worst enemy…or my mind is…with the what if’s, the projecting and the idea of “what should be”

We recently got back from Milan and learned some things I can’t even write about or talk about because then it brings truth to it. I don’t want these kids to have to go through anything else. I don’t want to watch them go through anything else. When we barter with God sometimes we can forget the things we say. We forget some moments when we are down on our knees begging for help at any cost. I have had many of these moments the last 7 years. I was reminded in Rome when talking to a fellow MLD mom of the words I spoke 6 years ago when trying to save Ella’s life. The words spoken of what I would be ok with giving up to have the opportunity to save her and have her here alive. Words that seemed to haunt me as they seem so much more harsh now. I was glad to be taken back to that day of being willing to give up anything as it became a reminder just how lucky we truly are to be where we are today. It doesn’t mean the pain is not there, it just helps you make friends with it, because the pain would be much different and worse without the treatment she received.

When Eli went to get in the shower yesterday he fell and pushed the door shut with his back… I heard him call me and I came running only to find I couldn’t open the door because of him being against the door. Most people would be upset at this and at first he was, but then he scooted his little butt inch by inch until I could push the door open. He continued to scoot his butt as he talked about Jumanji while spewing movie lines until I got him in the shower. The pain lasted a few moments along with the frustration of not being able to get himself up but there was an acceptance that I could see in him… this was HIS life and he was living it as best as possible. The way he has been able to conform to his ever changing body and life is incredible.

May we all continue to conform to the changes that arise in our life and follow our own paths. If we do there is no doubt that we will be better people in the long run. Just another lesson these amazing kids have taught us on journey called life.


~ by Rebecca on December 27, 2019.

7 Responses to “The gift of conformity”

  1. Becky, as I read your heartfelt, painstakingly honest post, all I can do is cry. I cannot imagine what you are all going through, but please know that I admire your courage to be un- apologetically honest in your sharing. I do know that I pray for your family EVERY day in the wee hours of dawn, when I say my daily prayers. That little boy inspires so many across a world wide span. And Ella, she is the cherry on top!! God bless you, Hut and your entire family. With all the love and compassion I have in my, heart I pray for you. xoxo

    • Thank you so much for your kind words! Many days I feel that writing is my only escape from the pain. It helps release it so thank you and thank you so much for praying!!! Xoxo

  2. Your honesty is beautiful. Your pain is real. The daily anticipation of grief is something no parent should ever have to bear. And yet you have to face it times two all the while making the world a beautiful place for your four children. Every time I see your joyful family I am amazed at how you have over come this daily stress. You my dear may feel the daily weight but you do not show it. And you keep the weight off your children. Their endless smiles through this journey can only come from incredible love.

    • Kati thank you so much for your inspirational words. I don’t feel like I don’t show it and I feel like a failure times four but I keep trying as much as I can. I do believe their smiles are such a gift and i cherish them more than you know.
      Thank you for the support and love 💙❤️

  3. You are such a inspiration, brining out the best in such a horrible situation. Everyone has a different cross to bear but sometimes we all need to see how someone else is handling their’s. Thank you and keeping you and your family in my prayers

    • I completely agree… everyone has something and for me it’s just healthier to share and write about ours. Thank you so much for the prayer!! We appreciate them so much!!! Xoxo

  4. My heart hurts for you, I have no words except that you’re an amazing and awesome family. God bless all of you. I will continue to pray.

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