A Year’s Fears- How Life Has Changed a Year After Diagnosis

A year ago this week we were waiting on MRI results for our 14 month old son. In the throes of Spring Break, our days had grown busier and longer than the typical weekdays that were ruled by the routines of homework, bath, and bedtime. I had all but forgotten about the MRI when my phone began to ring, a caller that in a glace I recognized as Texas Children’s Hospital. I can remember so many of the small, acute details about that day because for a brief moment of it time stood still. Even now my mind returns to that ratty t-shirt I was wearing with the stain on the shoulder and the Spongebob theme song on the TV. It was the soundtrack to which I found out my son had a brain malformation.

On that day a year ago I feared most that Avery would not progress. That he would not accomplish the things his father and I dreamed of from the moment we knew he was coming. If I am being completely transparent, I even feared he would never be perceived as “normal.” I, in all my rationality and acceptance, was worried about normal.

When you are told that your child’s brain formed abnormally in the womb, it crushes you. In our case, a routine MRI to check on a brain bleed he had suffered during his premature birth led to the unexpected diagnosis. Somehow missed during his 16 weeks in the NICU, Avery was born with excessive folds in the perisylvian region on the right side of his brain. I had never heard the term Polymicrogyria before that afternoon when time stood still. Even now, medical professionals will often turn their heads to the side and request “can you spell that?” when I rattle it off in his list of diagnoses. In the beginning, the fear was worse because the term itself was so foreign to me. How can you be brave in the face of something you know nothing about?

Arick, Avery’s father, and I did not talk much that afternoon. There was no small talk, no conversation about our days. The gravity of Avery’s diagnosis hung between us like a wall. We sat in relative silence together making the calls to loved ones to let them know the news. We knew enough to explain polymicrogyria but beyond that, beyond describing what his brain looked like…we knew nothing. So we Googled. And we cried. As we turned out the lights I promised Arick I would stop Googling. Our fear that night was palpable. Sometimes, it still is.

It is only with the clarity of time, of a year fast forwarded, that I can recognize how wrong I was. In my moment of weakness I let myself doubt my son. My son who fought for his very life when he weighed just 1 lb 3 ounces at birth, my son who’s survived things I would say I cannot imagine but I can because I was there. I feared he wouldn’t progress. I thought he would never understand me or be able to communicate effectively. Last week, I asked him if he was ready to go to bed. He looked at me, shook his head emphatically and said “NO night-night!” So, naturally, we stayed up.

Our dreams for him are still very much alive. The truth is, our dreams for him changed the moment he was born. “I hope he’s healthy” became “I hope he lives through the night.” Arick’s dream to coach his son’s football team became a prayer that he was physically able to play a sport. We were forced to instantly reevaluate our child’s future and make changes accordingly.

If there’s one thing we know about Avery, it is that he will accomplish great things. At 17 months he sat up and I cried heavy, burdened tears because I thought he never would. Within weeks he could army crawl like he was made for it. The first time he looked at me and said “mama” a piece of my heart that was broken by fear mended. At 28 months old now, he is trying to walk. I had this vision of my disabled child who would never be anything more than my disabled child. Avery is so much more. He is bright, beautiful and loving. He has polymicrogyria, cerebral palsy and so many other diagnoses. But those diagnoses do not make him. They are simply small fractions of who he is.

What has changed the most since his diagnosis? Me. I am happier because I get to spend each day watching my son grow and learn. I get to teach him and see his eyes light up when he gets it. I am here to see him fall and struggle with a left hand that simply will not work. I am grateful for even those sad moments because I recognize how different our lives could be. I know how debilitating that fear was.

I know that we will always fear the future for Avery. There will never be a time when we sleep deep, restful sleep. We will constantly question if, when and how he will be able to so something. Each day will be a new beginning though; each day a blank canvas for Avery to paint. He will paint it like only he can. He will paint it with progress. He will paint it with each feat he accomplishes. My son’s life will be a masterpiece.

He may not be normal to another family but he’s our normal. He was meant for us, and we are so blessed to have him. Polymicrogyria, cerebral palsy, fear and all.

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Avery recently while hospitalized for RSV.