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My Son Can't Move His Body, but He'll Move Mountains Someday

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My son,

I held you in my arms a few minutes ago. I was contemplating the future and it is overwhelming. So I choose to exist here in this moment, and avoid visions of the impending scoliosis that your diagnosis, Pelizaeus-Merzbacher disease, dictates.

Pelizaeus-Merzbacher Disease the mighty

You are so small. Your spine is the length of my extended hand. I usually slightly press on it, hoping to counteract any imminent curves. It is foolish, I know. I am learning to feel every vertebrae with my fingertips, and I am thrilled when I feel the spaces in between, their straightness. “Does every parent do this?” I ask myself. As you started being restless, I left you on the corner of the couch with your favorite toy piano, and I feel the need to write you a letter.

My son…

I know you are tired of sitting down. Tired of being held. Tired of being put here or there. Though you are exhausted, the last thing you want is to lie down. Nonetheless, I still leave you on the same safe place where you won’t fall, and I hand you the same toys. Like an unfinished Minecraft game, your world seems finite. The exploration ends as far as your arms reach, as far as your inchworm crawls get you.

So from one person’s arms to the next you go. Like hitchhiking your way around. You have little control of where you end up. Sometimes I forget about you, and so you begin staring at the lights, at the ceiling, at the shutters, at your parents’ wedding picture in wonder. I am sure you have memorized every nook and cranny of our living room, our kitchen, our bedroom. If you were an architect, you could perfectly trace our home from memory.

Pelizaeus Merzbacher Disease the mighty

I am sorry, my son, for all those days I am busy. And for the ones that I am not busy, and I selfishly choose wrong. Sometimes my imagination freezes and numbs my every thought.

I have seen you stay in a sitting position for long periods of time. People walk by and not notice you as if another piece of furniture. But I see you from across the kitchen smiling as you play your little toy piano like a virtuoso. You pull the lever on the piano to change the music, and you have this accomplished grin on your face  Even though it may go unnoticed, you do not care. You know the effort it takes, and you relish in it. You try to clap your hands, but your left hand misses the right hand two out of three times. You celebrate every win. You are my hero.

I promise to make it up to you. I will make each and every day as special as you make mine. I will discover new songs with you, my Maestro. We will watch the stars and roam the Earth. We will cheer goals and touchdowns. We will dance and laugh.

And we will pray in appreciation, for forgiveness, for patience, for faith. Though you can’t move your body, you will help move mountains someday, little boy. You already have me on the move. I am coming for you. I hear your cries. Let’s go play. I love you.


Pelizaeus Merzbacher Disease the mighty

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Originally published: April 3, 2015
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