What It's Like to See My Child With Epilepsy Fail His Medication
Last night I was wandering down the produce aisle when my phone buzzed with a text from my husband: “4 min seizure. this sucks!”
Our son, Bunz, is failing his meds.
He’s had seizures every night for the past week. And the ones we see are only the tip of the iceberg, eruptions from the electrical static always simmering in his brain.
Failing a medication looks messy and exhausting and frustrating. And it is. For everyone.
It looks like panic at 3 a.m. as we reach through the darkness to feel for Bunz’ trembling face.
It looks like a child’s red-rimmed eyes and pale cheeks. He’s so tired.
It looks like a lady choking back tears at the grocery store, trying to hold it together over stacks of neatly bundled asparagus. Remembering her son playing schoolhouse with farm animals on the living room floor, the afternoon sunlight streaming through the windows as a tiny cow tumbled down the toy slide. Why did she wait so long to get down and play with him? Why did she say she needed to finish her work first? What was wrong with that woman?
This morning we drove across the city for a hastily scheduled appointment with Bunz’ neurologist. For the first time since we’ve been coming here, the assistant didn’t lead us back to an exam room. She seated us in a conference room and asked us to wait a few extra minutes; the doctor was running late dropping off his kids.
I wondered about his kids — how it must be to have a home brimming with health and happiness. And a nice fat paycheck. All of this imagined, of course. Nobody’s life is perfect.
From a window overlooking the bay, Bunz counted one ship, two shuttle buses, one train.
The doctor came in. We looked at each other.
“So,” he began.
“Yes,” I said.
There was a silence.
Then, in what might be the most productive neurology appointment of all time, we scheduled a video EEG, an MRI and an MEG to try to pin down the location in his brain where the seizures begin. We discussed the possibilities. “Our new insurance provider will love us,” I thought.
The neurologist asked Bunz some questions; Bunz gave real answers. I felt proud, remembering a few years ago when Bunz didn’t understand the concept of a question – that you were actually supposed to respond. He’s come so far.
We must have seizure control, I decided.
We demand it.
After the appointment, Bunz and I sat on a bench outside the hospital and shared a blueberry muffin from the coffee cart. I told Bunz I was proud of him for working so hard, for learning so much and never giving up. Even when it’s not easy.
“I love you, too, Mama. Where are my Pop Chips?”
I drove him to camp. His beloved shadow aide is gone for the rest of the summer and a new session started today, so he had a different classroom. Change is hard on Bunz. “Don’t drop me off here!” he wailed, his lower lip trembling.
I left him on the playground.
He stood near the teachers and watched two girls play with the steering wheels on a play structure. When they walked away, he ambled over to take a look.
I watched him through the window. My stomach hurt.
When will this get easier?
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