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How I've Changed in 5 Years of Parenting My Son With Cerebral Palsy

Five years ago, I wrote my first blog post that would go on to be published on The Mighty. Our son was 2 years old and had just received the diagnoses that would define our next few years. That would define our entire lives, as it would turn out. At the time, unbeknownst to me, I was struggling through a particularly nasty case of NICU post-traumatic stress disorder. I found it extremely difficult to navigate life with his new diagnoses when I still hadn’t come to terms with the trauma that the previous two years had handed me. I was struggling, my head barely above water. So, I began to write. My thoughts and feelings poured out of me through the sieve of a broken heart. Those five years saw more tears than I care to recall, but it was the culmination of those tears that produced the mother I am to Avery today.

Avery left the NICU after four months with a clean bill of health, we were simply cautioned to watch for the weakness, rigidity, floppiness, and limb favoritism that could be early signs of cerebral palsy. When we began to see that tell-tale weakness and rigidity materializing at around 12 months old, our worries began to turn into real, tangible fear. Within months he was diagnosed not only with cerebral palsy but with a rare brain malformation called polymicrogyria. The day we got the call, all I heard his neurologist say was “nonverbal, typically ‘confined to a wheelchair,’ epilepsy that is difficult to control.” There was no way to see past the bad in order to understand that there could be good. It was all doom and gloom. Worst case scenario. Our son, who we had been so hopeful for while watching his physical therapy sessions, was never going to walk.

That fear held me captive. How would he go to school? Would he have interests, friends, or even be accepted by his peers? Was I capable of being all that he needed me to be? The one common denominator for most patients living with polymicrogyria is seizures. Not if, but when. The thought of his first one haunted me. When, where, how long? Would I be there? And would he ever actually walk? Five years ago, I was still very much in that “woe is me” mindset. I saw his CP and PMG as maleficent forces that I was too small — too insignificant — to fight.

What I didn’t consider in those moments was that Avery was by the definition of the word, a survivor. He took his first heroic steps just days before his third birthday. He has an awkward gait and he falls an awful lot, but he walks. In fact, most of the time he’s running! If he didn’t, of course we would love him the same. He would be the same stubborn child he is. I wasted so much time worrying about something that matters so little in the grand scheme of things. The ability to walk (or talk or do anything) doesn’t define a person. I should have focused more on the things he could do. My overexaggerated fear was a disservice to his autonomy!

He had his first seizure at school when he was 4. My worst fear came true. They communicated with me stunningly, though, and I was there within 10 minutes comforting him as he eased back into real consciousness. By that same evening, he was back to his status quo, playing with his toys in his room and asking for pizza. He’s had a couple more seizures, none as severe as the first one. For that, we are thankful because we know that one day soon this will probably change. Instead of focusing on the fear of the future, I now choose to appreciate the stretches where he hasn’t had seizure activity and pray that the lull continues.

I didn’t change myself. There was no epiphany where I realized that I was doing my son a disservice with all my worrying and stagnation. Avery changed me. I watched my son conquer everything we were warned he may not with a strength and resilience the likes of which I had never seen before and I’m unlikely to see again. He rarely complains, though I know he lives in pain. He sees how he’s different from the other children, but he does not let it hold him back. He makes friends with ease. One day he plans to live in Australia with his best friend and their pet kangaroos. He’ll have to commute back and forth to the United States for his job as an astronaut, of course. Witnessing him grow into himself changed me. Seeing Avery as an individual who is capable of whatever it is he wants to accomplish in life has loosened the clutch my fear had over me.

I still worry, but I don’t let it control me. Life is easier. I’ve accepted the fact that if my son wants to do something, he will figure out a way. We have tried to instill in him that he is capable of anything he sets his mind to do and I will go down fighting to ensure he has every opportunity anyone else does. We will not let CP hold him back from anything.

Avery is so much more than cerebral palsy or polymicrogyria. I’ve said this all along but wonder now if I truly believed it back then. Back five years ago when fear consumed me. He’s so much more than any diagnosis he will ever receive. He’s a little boy who has survived more than many adults ever will. He’s ash blonde hair and striking blue eyes. He’s reading at a full grade level above his own. Master of video games though he can only use one hand. He’s quick-witted and the best teller of knock-knock jokes. Entirely too much attitude and sass for someone weighing only 45 pounds. Super Mario expert extraordinaire.

He’s our son and he’s perfect.

I cannot wait to see how much more he can change me in the next five years, and I look forward to continuing to learn from the absolute strongest person I know.

Thank you, Avery.

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