First of all, Jack and Sam are fine. We’ve had an eventful time since Jack’s shunt surgery, which I will detail in a moment, but first, I want to write about something that’s been on my mind for a few months.
A mother who is involved in an online community of parents whose children have tracheotomies recently wrote about what it means when your child is never going to be “out of the woods.” I want to talk a bit about that metaphor here, because it has come to have a lot of power for me in the last few weeks.
Have you ever spent time alone in the woods? (The actual, non-metaphorical woods, I mean.) Everything in a natural landscape seems to be precisely tuned to the correct volume for the senses. You can really take things in when you are outside. Trees alert you to wind, light, recent rain. Growing things make you note the passage of time in a way that you simply don’t while commuting, shopping, sitting at a desk. You can watch the air condense and form mist in the evening. You can actually watch it breathe over the earth. Abstracts become concrete in this way. Time, air, growth.
Have you ever spent time alone in the woods at night? Now, nothing is concrete. You hold the flashlight’s inconstant doughnut of light in front of you, filled with the inexplicable sense that something that has always been very close at hand has now swung its malignant attention upon you. The person who serenely watched the movements of clouds over the lake hours before and made existential comments is now scarcely a person at all. Just a small, small thing picking an unsteady path through the trees, acutely aware of how fragile her existence is. She is part of the woods, not sitting above it somewhere, as vulnerable as the twig that cracks underfoot as she steps off of the path’s hard clay.
Being a medically fragile family is just like this. When there are no fevers, no aspirations, no neurological symptoms, you experience a clarity and serenity that’s hard to express. Your goals, once abstract, are concrete and stay in sharp focus. You are not distracted by things that don’t matter. The slings and arrows of the day fall away easily. Your children’s accomplishments seem amplified when it was never a given that they’d accomplish them. You feel almost heroic with this energy and are humbled by the thousand acts of grace within your community that you are uniquely privileged to witness firsthand.
And then… night sets in with the phone call in the midst of a busy work day. Some new symptom, scan, or emergency arises, and the lights are out. Now, you feel the enormity of the uncertainty of your situation, and your powerlessness in the face of it. All the perspective you thought you had in the light is utterly gone in these times. What can you do? You wait the terror out and hope for the daylight to come back.
We’re back visiting the nighttime woods with Jack.
Monday, we got a call from Jack’s daycare indicating that Jack had a “neurological episode”. He was just about to have speech therapy, when he put his chin down on his shoulder, became non-responsive, and his eyes diverted to the right, twitching repeatedly, just as they did during the first days after tumor resection. It lasted two minutes, and it took a full 15 minutes afterwards to bring him back to himself. I’d say seizure is one of the “big three” that we fear the most in Jack’s case… tumor reemergence being #1, severe aspiration and/or loss of oxygen being #2, and seizures being #3. What makes this episode so frightening is that its something we’ve never seen before. What does this new development mean? After a day in the ER, a rapid MRI scan, an EEG and a follow up visit with Dr. Piatt, we are no closer to understanding than we were before.
I was grateful that Dr. Walter called to assure us that this doesn’t mean that the tumor is reemerging, and most likely the recent shunt surgery is to blame. There are no guarantees that Jack won’t develop a seizure disorder- after all, his brain has had many assaults. Indeed, Dr. Piatt concurred that Jack has enough risk factors for seizure that long-term medication sounds like a wise course. This new medication is worrisome to us, as we don’t fully understand its side effects or implications. Our appointment with yet another team of doctors in the Neurology unit at the end of the month should provide more information.
So Jack now has a new medication, and we have a new threat to monitor, but life goes on as before. Monday night, after a day which included a seizure, being restrained for an MRI and being forcibly hooked up to electrodes for a lengthy EEG, he ran around in his diaper laughing his silent laugh and chasing his brother.