In the early years, we searched for answers. I believed that finding the cause to my son’s problems would provide the road map back to “normal.” We tested and retested, then did it again. Only much later did I realize that what had been mattered far less than what is, right now.
From A Bad Reaction:
We decide to conduct a 72-hour EEG at a specialty hospital in town. When I call about our visit that afternoon I go over everything with a nurse. We will check into the hospital the next morning and are asked to review preparation.
“Just keep him up the morning before you arrive,” the nurse says.
“He goes to bed at half past eight. How do you recommend doing that? Should I give him coffee?” I ask. This is a joke, but she doesn’t get it.
“You should NEVER give a toddler coffee. How long have you been doing that?” I can picture her shaking her head. I have the feeling she thinks we could skip the EEG because she’s discovered the cause of his seizures.
“We don’t give him coffee, that was just a joke,” I respond but she doesn’t laugh. Papers shuffle.
“All righty then.” This is Minnesotan speak for “up yours.”
I hang up the phone and plan for the evening. I make a pot of coffee. It’s all for me.
I am awake when Tyler calls me to her room.
“My stomach hurts,” she says. I am certain it is psychosomatic because of the stress. Then I worry that I am becoming my mother, always analyzing things.
I put her to bed and tell her sleep will help. I get a bowl from the kitchen and place it on the floor beside her bed. Five minutes later she calls me back to her room. She is sitting up and her stuffed horse and teddy bear are in the bowl.” I pull her out of the bed and start to prepare her a bath. Behind me I hear Porter’s noisy breathing as he sleeps curled up on the side of the bed. I brace myself for a long night.
Gillette Children’s Hospital sits in downtown St. Paul and caters to young patients with disabilities. A specialty here is epilepsy and it is the best place in the area to have a protracted EEG.
The ride to the hospital is tortuous as Porter nods off in his car seat and Tyler shrieks at the top of her lungs, “NO SLEEPING PORTER!” Then I scream at Tyler to stop screaming at Porter. She screams, I scream, he sleeps.
We arrive early and are sent up a bank of elevators to a special wing where these tests are done. I look inside and see a common space populated by toddlers and older children playing with toys. It’s a normal scene, save the wires: each child is connected to a tangle of cords that trail behind them everywhere they go.
A nurse checks us in and directs us to a room that Porter will share with another boy. He sits in his bed rocking, clutching a fabric softener bottle. His mother looks up and waves and I wave back. The boy rocks.
Porter flaps and bangs on his helmet. The other boy yells.
“I’m sorry,” she says. “He’s very distressed by noise.”
Porter bangs. Roommate screams. I nod.
The first step is the fitting. This sounds fun, like trying on a wedding dress, but it’s not fun and feels more like getting a tooth pulled. I have a flashback to our last visit to Great Clips when we had to leave halfway through Porter’s haircut because he kept trying to grab the scissors.
The first step is to attach the cap. We follow a technician into a special room where she approaches Porter with a red felt pen.
“Hey buddy, we’re going to draw a little Xs on your head.” Porter ignores her and lies under the exam table. I’m fairly certain he’s licking the floor. “I just need you up here on the table for a few minutes. It won’t hurt, I promise.”
I manage to hold Porter as she begins the process. She puts a tape measure around his skull like a headband and marks something down in her notes. Then she marks designated spots. For the first few minutes Porter laughs because he thinks it’s funny. Or because he remembers something funny. Or maybe he’s having a psychotic episode. After fifteen minutes, the novelty wears off and I restrain Porter using the basket hold technique of pinning his arms to his sides. As the technician marks, I squeeze, and he screams.
Attaching the electrode cap isn’t any easier and it takes two of us to hold him down as we wrestle it into place. The technician is unfazed and gives it a little yank to force it into place. There’s no messing around. I like this woman.
“These things are indestructible. This is the fidget-proof version,” she says.
“Is there something to the right of the fidget one? Maybe a combat version?”
“It’ll hold with this.” She hooks a strap around his chin to keep it in place.
Porter screams. He looks like an angry swimmer.
I lift him down and he bolts out of the room, but is stopped by the tether attached to the cap. It’s exactly like having him on a leash, only this one is attached to the top of his head and gives a snap when he runs too far. He tries to yank it off and can’t and lies on the floor crying.
I look at my watch. Only seventy-one and a half hours to go.
I have the first shift and Brian has the second. Someone needs to be at the hospital with Porter. We can’t explain to Porter why he’s there, or why he wears a tight-fitting hat that he hates, or why his roommate wails all night and I act like nothing is weird.
He never gets used to the cap. He runs, it snaps, and he grabs his scalp. This happens for six hours: run, snap, grab.
I look at the other mothers and I notice that they act like nothing is odd. I think about these strangers who don’t have the range of reactions they ought to have. They look like refrigerator mothers.
When Brian arrives, I meet him at the door. I’ve been up since 2:00 a.m. and have drunk four cups of black coffee. I am not the best version of myself.
“How did it go?” he asks. He looks rested and normal.
“Well, he hates the cap, can’t pull it off, and is homicidal. Otherwise, he’s great.”
“Okay. I brought in Winnie the Pooh. The brochure said they have video machines.”
“Good luck,” I say pointing to the fabric softener bottle boy. “His roommate doesn’t like noises and shrieks when he hears them. Apparently he doesn’t sleep at night.”
Porter looks at Brian hopefully and pulls on his sleeve.
“Okay,” is all Brian says.
After his seventy-two hour EEG, the results come in. “Porter has disorganized electrical activity in his brain,” the neurologist tells us as we sit on Porter’s bed. The doctor wears a button-down shirt and Dockers and has a clamp-on teddy bear affixed to his tie. He looks well rested.
“I was fairly certain this was true before we had our visit,” I say. I am not trying to be rude; I’m trying to be funny. But it comes out curt since I am also insane at this point. The doctor pretends he doesn’t notice.
“We captured several events as he slept and can see that they emanate from the left side of his brain. We don’t see anything else that sheds much light on the etiology of his seizures.” The neurologist says he’ll talk with our neurologist and share the news that we have no news. Or we do have news: This is the new normal.
To read more from Sarah Bridges, please buy her memoir “A Bad Reaction” (Skyhorse Publishing) available on Amazon.com. For more “Free Range Lives” messages, click and subscribe to the blog. We appreciate your support and your “shares” as we create a community of support and hope.