I wasn’t always this way. Before I had my first son, I took pleasure in navigating life with less of a map. My anxiety over the unknown began during pregnancy, after a routine ultrasound at 24 weeks. What followed over the next eight hours was an unexpected amniocentesis and a round of specialists with varying prognoses that aimed, at best, educated guesses into the abyss of my uterus. Weeks later, I got test results from the Mayo Clinic but still no definitive diagnosis. The doctors weren’t sure what was making my son measure the way he was measuring or react the way he was reacting on screen. It was a situation inside my body that was out of my control.
It wasn’t until I was on bed rest at 30 weeks that we got the definitive call on my son’s condition: Beckwith-Wiedemann syndrome — a rare overgrowth condition that wreaks havoc on the pituitary gland. This news was swiftly followed by surprise No. 2: I went into labor shortly after hanging up the phone. Mere hours later, Charlie was born.
After a head scan while Charlie was still in the NICU at 30 days old, the head of the department asked to speak with me. I didn’t know the results of the scan, but the request triggered a primal reaction. I couldn’t breathe, and I backed away from him, my heart racing and my head shaking.
There is only so far you can go, however, before you’re out the hospital room door, and I couldn’t leave Charlie. So I stood and held my panicked breath while he told me that Charlie had damage in all four quadrants of his brain. “No one has a crystal ball,” he said, when I managed to gather my wits enough to ask what this might mean for his future. But after the rickety unpredictability of my pregnancy and Charlie’s first days of life, all I wanted was a crystal ball. Read my tea leaves. Study my palm. Check my astrological sign. Please, someone, tell me exactly what is down the road for both of us.
When Charlie was 2, after a few days of up-and-down fevers, I gave him a bath. It was one of those endless Thursdays in January where day slips into night without much noticeable difference. As I was pulling on his Batman pajamas, he began to stiffen and then shake. It wasn’t just the fever — it was a seizure. That ended with an ambulance ride, a spinal tap and 48 hours in the pediatric intensive care while experts hooked electrodes to Charlie’s head and watched the screen for errant waves. We left with a prescription for daily seizure medication and a phone number for a neurologist.
This is roughly when I began to gather up the reins of control over anything I could. I never went to the grocery store without a list. I asked my spouse which restaurant we were going to on date night and made reservations, just in case. I bought movie tickets on Fandango and selected our seats. I kept two extra bottles of both children’s Tylenol and Motrin in the medicine cabinet. Our van held extra diapers and wipes and tissues and blankets and seizure medication along with the spare tire. I never went for a walk without checking the weather first.
These small forms of control were the only way I knew to survive in a chaotic world.
Then, when Charlie was 3, he walked on water. During his weekly aquatic therapy, with weights on his legs and minimal support from his therapist, he traversed the pool on his own two legs. Without the constraints of gravity, he walked for the first time. Nothing can prepare a mother’s heart for that kind of surprise. I cried and wiped my face in the muggy heat of the indoor pool while he laughed in delight.
The tide shifted after that. He got his first wheelchair and found new freedom. He said “mama” in speech therapy. He outgrew the seizures. He began to defy the odds of that 30-day head scan and all that had come before. He is 7 now, almost 8, and thriving in public school. He rides the bus. He rides horses. He laughs more than he cries. He’s a happy, healthy kid. But I’m still counting snack bags.
What no one tells you about trauma is that the coping mechanisms that help you survive it can become the box you seal yourself in later. Control — even the illusion of it — is hard to give up. I like the feeling of safety that those extra Tylenol bottles give me. I pay for the premium subscription on my Weather Channel app so I can get the extra-extended day forecast. I grasp at all the little ways that I can pad our lives with anticipatory awareness.
From the outside, it looks like smart parenting. From the inside, it’s exhausting. I’m just beginning to unravel it. I’m never going to be the woman who forgets what day it is, but hopefully I can forget how many Ziploc bags are in the pantry.