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When I Realized My Child With Cerebral Palsy Doesn't Need to Be 'Fixed'

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I am a fixer. By nature, by design, in all ways, I am a helper — even my Enneagram says so. I always have been.

At the beginning of all of this, sitting in labor and delivery with my barely-there baby bump, my first instinct was that I could fix it. I thought I could make it go away.

I didn’t “fix” my infertility, but I investigated doctors, options, costs, procedures and laid out a plan of action. I threw myself into research. That was my way of not only distracting myself, but making my soul feel less helpless. My body may have been broken (which is what I thought at the time), but my mind wasn’t.

Laying in that hospital bed, though, was the first time in my life there was nothing I could do. My child, the one I hoped and wished I would be blessed with for so long, was coming 12 weeks early. We were thrown into conversations about DNRs, transfusions, disabilities and odds of survival. Before his first breath, we were making decisions regarding life and death.

I couldn’t stop it. It was out of my hands.

Then Flynn was born. I saw his face, and in an instant, I loved him more than anything or anyone else in this world. I couldn’t change the situation, and even though my guilt tried to convince me otherwise, there was nothing I could do that I wasn’t doing already.

I could, however, throw myself back into research and learn everything about prematurity and pre-term infants. Post-NICU discharge, I read every article, checked every book out of the library, learned every statistic, and saved every organization and non-profit website to my favorites list. Being a “preemie mom” became my thing. I owned it and I was good at it — whatever that means.

Then came Flynn’s diagnosis of cerebral palsy and PVL. I had to start all over. I had to fix this…

But you cannot fix what isn’t broken. And Flynn is the furthest thing from damaged. He’s beautiful in every sense of the word. He’s kind-hearted. He’s determined. He’s stubborn. He’s fierce. He’s Flynn.

You know what did happen in all of this, though? This life fixed me.

This existence, you know, the one I was so terrified of living? It showed me what it means to be better, to know more, to be who I was meant to be. I’m not sugar-coating the difficulties each day carries or underestimating the weight I carry, but I do know it’s worth it. There is no “cost” to this life, even though I often feel like I’m burning the candle at both ends, only reward.

You bet I’m trying to find my place and have a voice in the “Parents of Kids With CP” community. I’ll always be a fixer, it’s in my DNA. I can’t fix that part of me, ironically. Of course, any parent would give anything to take struggles away from their children. But now I know what truly needs fixing: society needs fixing, not my sweet boy.

Originally published: March 9, 2020
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