Last week Benjamin had a standard follow up visit with his neurologist. The first part of the visit included an EEG to check the electrical activity in his brain. The one and only normal EEG Benjamin had was when he was four months old. He hasn’t been seizure free for 16 years, but his daily seizures are brief and manageable. Unlike most of the epilepsy moms I know, I’m not expecting or even fantasizing about a change. Things are good the way they are. It’s been 20 months since Benjamin has needed a dose of emergency Valium to break free from a persistent seizure.
The EEG is a tool for the doctor and guides medication decisions, but for Benjamin and me it’s a nuisance. Benjamin isn’t fond of having all those wires attached to his head so I routinely bring a portable DVD player and his favorite Teletubbies episode.
The technician worked as fast as she could to place the twenty-something leads on Benjamin’s head. Every now and then she’d comment about the Teletubbies.
“I used to love this show.”
“I liked the red one.”
The red one, Po, is Benjamin’s favorite character too so this girl was scoring major points with us, especially because she was keeping Benjamin calm with all this Teletubbies love.
Then she said, “We probably were watching the show at the same time. I’m only four years older than him.”
And it was just a moment. A very common moment when I hear or see something that reminds me of the life Benjamin doesn’t have.
There was a time that imagining the unobtainable, parallel universe where Benjamin grew up healthy, went to college, found a profession and a love to spend the rest of his life with would crush me. Now I just tend to note the moment without emotion, but with a ton of curiosity.
Should I be mad or sad? Is this acceptance or have I habituated to this life to the point of some kind of unhealthy numbness?
Mostly I think it’s acceptance. Plus I’m tired from recent insurance battles which required months of follow up phone calls and paperwork in order to convince whoever… that Benjamin is permanently disabled and can they please extend his dental coverage like we were told he was entitled to so we don’t have to lose the best dentist he’s ever had. And also, how on earth is it possible that anyone with a medical degree can tell us with a straight face that a wheelchair is not medically necessary?
That’s where my anger and sadness goes. Not to the nice, young, Teletubbies loving EEG technician. Guess my head’s still on straight after all.