I am a fixer. By nature, by design, in all ways, I am a helper – even my Enneagram says so. I always have been.
In the beginning of all of this, sitting in labor + 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 for which I hoped and wished that I would be blessed with for so long, was coming twelve 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 felt like I was knocked to the ground and kicked in the stomach. I had to fix this…
But you cannot fix what isn’t broken. And Flynn…he’s the farthest 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 that 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 that each day carries or underestimating the weight of the burden I carry, but I do know that 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.