Yesterday we heard the words that we knew were coming. Knowing didn’t make them easier to bear or less painful. I may have even sighed in relief at hearing them because I felt like someone finally acknowledged the elephant in the room. Either way, I can tell you without question that I knew. When Avery was 9 months old, I looked at Arick and said to him: “I think Avery has cerebral palsy.”
When I was in the hospital those three days trying to keep Avery in I did so much Googling that when he was born, I already knew there were groups on Facebook for parents of preemies, micropreemies, babies with feeding issues and many of the disabilities associated with prematurity. When he was born so early, and so small, I desperately wanted to connect with someone who KNEW how we felt. I didn’t want an “Oh, I understand how hard this is- my baby was in the hospital for a week after he was born!” I wanted “MY baby was a 25 weeker. She spent months in the NICU. I won’t lie, it was a nightmare. But here she is today. She struggles with -, – and -.”
As the months have passed, I’ve seen many families face exactly what we are now. I mentally cataloged every symptom, every warning sign. I was preparing myself for the worst, even then. I fed my fear…the demon inside me I knew only wanted to make me suffer. One day that fear demon was full and I knew. That’s when I told Arick.
At 6 months adjusted Avery had yet to completely roll and his left hand was always closed. I came to realize that he just didn’t use it. Ever. His left toes were clenched, too. If you tried to lift that arm, you’d be met with resistance an infant shouldn’t be able to provide. He didn’t pass things between his hands and if you sat him up he flopped like a wet noodle. I called Early Childhood Intervention and scheduled an evaluation.
I feel like my eyes were opened and at the same time my fears alleviated the day I met his physical therapist. I’d ask her then if she thought he had CP. “Let’s not go there yet, Momma.” But soon, we’d have to. For the last two months she’s fought and advocated for our son as if he were her own. With her guidance, I broached the subject with his doctors.
And today we know. Avery has cerebral palsy. Soon, we’ll see the doctor who will tell us exactly what type and give us a prognosis for him.
What does this mean for our son? It means he may need the help of medications, muscles relaxers and Botox, braces and years of therapy to do the things we so often take for granted. It means that he was left with lasting, permanent damage from being born far before his tiny body was ready. It means that our fears have come true.
If you’ve met our son, you know. There’s nothing like him. He’s beautiful. Brilliant. Strong. Determined. Awful. Just the worst baby ever. He’ll scare the life out of you and then smile wide, showing off that little tooth or before it, nothing more than tighly clenched gums. Smile from ear to ear, his cheeks squishing up and forcing his eyes closed. He’s amazing.
Because I know these things I know that CP is just a medical term on a chart. It isn’t who Avery Elijah Hartman is. I know that he’ll fight with the determination that only a formerly 19 ounce baby can. That he will do everything he’s meant to, even if it takes him longer and he has to work harder. But that he can do. We’ve seen it. And because prognosis=guesses=crap.
There’s a peace in knowing but I can’t lie. I’m deep in the stages of grief right now. Which one, I couldn’t tell you. I know for certain I haven’t reached acceptance. As his Mom, this will take time for me. But like him, I’ll get there in my own time. I don’t fear the future. It’s the unknown that keeps me up at night.
He’s sick right now, and it is impossible to put into words how it hurts to see him suffer after he suffered for so long. It brings back memories. Painful ones that we won’t forget. Memories that we wouldn’t want to forget. Those memories are how we know that even in the face of a diagnosis of cerebral palsy, Avery is going to continue to be a rock star in everything that he CAN do.
Because God gave us a miracle the day he gave us this little boy.