Kids Motherhood

To Name a Thing is to Own It: My Son Has Cerebral Palsy

To Name a Thing is to Own It: My Son Has Cerebral Palsy www.herviewfromhome.com
Written by Jamie Sumner

Practice. Practice makes perfect. Isn’t that what they always tell you? So, I practiced. In the mirror after a shower when it was still fogged over so I didn’t have to look myself square in the eye. In the car, in between expletives at other cars. In my head, all the time.

“My son has CP.”

“My son has cerebral palsy.”

“My son has brain damage.”

“My son has global developmental delays because of trauma at birth.”

“My son’s name is Charlie.”

Only the last one rang true. And only the last one was true for the first thirteen months of his life, at least on the record.

Do you know what’s better than a snow day for a teacher? A snow day that gets repurposed for the high school state basketball tournament in March. It’s magical to be free in the spring. Summer come early for one sweet day. Or at least I assume. Because on this particular day almost five years ago, I was grounded. Grounded by my OB and placed on home bedrest. Hours of fitful couch time while others played outside. There was no “rest” in my bedrest. Turns out it didn’t matter. Halfway through my students’ game we streamed on TV and a quarter of the way through my gyro and spicy fries, I went into labor at 30 weeks.

We already knew Charlie would be born with something called Beckwith-Wiedemann Syndrome, a diagnosis most doctors and nurses respond to with a blank stare. It’s so rare and weird that nobody knows what it is. I’ll tell you what it led to: an enlarged tongue, a trach, and a g-tube…and perhaps by fluke or fate it led to the thing in my head that even at a year old, I could not say. “CP” whispered the ghost of Christmas Future.

It was a stupidly bright and warm May day that we drove to the developmental clinic about a month after Charlie’s birthday. It was so beneficently nice it could have been summer. It should have been summer and we should have been home on the deck with animal flashcards and bubbles. Instead, we were driving through the cement maze of the hospital deck to take a three-hour test.

The Bayley test is the SAT for infants and toddlers…and adults, because I had to participate too. I was required to answer questions like: does he calm when he is picked up? Does he regard an object for five or more seconds? Does he search for missing objects? Does he have a different cry for hurt/angry/tired? The physical tests were all him. He had to pick up tiny blocks and put them in a tiny cup (like Alice grown large at the tea party) and sit up for certain lengths of time and move from lying to sitting. It was grueling. Hours of this with breaks only to eat and clear tears. Illogically, they saved the physical tests for last when he was most tired.

The wallpaper was covered in planes—as if primary colored machines would take the edge off. While the doctor left to “score” us, I practiced saying in my head what we had already known was coming for months. But with Charlie asleep on my chest, I couldn’t get through one. Instead, I counted the planes.

The doctor’s final stamp of certification goes as follows: “Given the brain damage registered on your son’s ultrasound, the developmental delays, and his most recent score on the Bayley test, we are officially diagnosing Charles with cerebral palsy.” Pause. “Are you familiar with the term, Mrs. Sumner?”

I watched the planes. They began to move. Aerodynamic feats of flying. I watched them for a long minute until they slowed and I returned to myself.  And then I said the last phrase on my list, the only thing I would say before walking out, “His name is Charlie.”

I saw that diagnosis as the end of something. The end of the delusion that perhaps the doctors and specialists had been mistaken, that it was all a misunderstanding. Haha. Those grey spots on his brain scan were just smudges, fingerprints from a sloppy technician. Whoops. He was a preemie. He’ll catch up.

Weirdly, as all the good things in life are, it was, instead, a beginning. It led to physical, occupational and feeding therapists. It led to braces for his legs and a wheelchair. It led to a special school and equine and aquatic therapy. It opened doors and it let him walk and it’s teaching him to talk.

It’s not hard now to say, “This is my son, Charlie, and he has CP.”

There is halt in my speech. The planes on the wall don’t move. My world has right itself and settled its orbit around a kid who is amazing in his own right. He brings the magic and he taught me to roll with it. March is Cerebral Palsy Awareness month, something I did not need to know four years ago. But this month I’m going to find every way to celebrate the achievements that going “official” with his diagnosis has brought. It makes me wonder what other things in this life might grow brighter with naming. Naming something can give it power. Naming can lead to action. To name a thing is to know it and to make it yours.

About the author

Jamie Sumner

Jamie Sumner is mom to a son with cerebral palsy and twins. She writes for Parenting Special Needs Magazine and dishes about infertility and special needs parenting on her website, http://mom-gene.com/. She can be found on Facebook @momgene.org, Twitter @mom_gene and Instagram @themomgene. She and her husband live in Nashville, Tennessee and most days you can find her outside with three kids, a dog, and a large cup of coffee.

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