Today marks the one-year anniversary of our son Edgar’s last seizure; therefore tomorrow is the one-year anniversary of his being seizure-free.
Cause for celebration? Absolutely. Cause for concern? Always.
To coincide with this milestone, Edgar’s medication regimen is on the descent. Where he was on five separate medications for his epilepsy last year at this time, he is now only on one–and a reduced dose at that. The goal is that as long as he remains seizure-free, by this time next year he should also be medication-free.
More on that in roughly 365 days.
For now, the question on my mind is the one that others have asked me and that I have thought long and hard about how to best answer:
If the seizures have stopped, does Edgar still have epilepsy?
The short answer to that is yes. He is still under a neurologist’s care and guidance; therefore his neurological condition persists. It will be his doctor who ultimately makes the official call when and if we arrive at that point.
As Edgar’s mother, my answer is a bit more convoluted and not remotely rooted in science.
It is my contention that as long as he takes medicine, he has epilepsy. As long as I wake up every morning and go to bed every night thinking about whether or not he will have a seizure, he has epilepsy. As long as every time I hear the wail of an ambulance siren and Edgar is not with me and my heart stops as I wait for my phone to ring, he has epilepsy. As long as every time the front office buzzes my classroom in the middle of the day and I assume it must be a message about my son, he has epilepsy.
And yet none of this is about me.
It is all about Edgar. And when he is ready, willing, and able, I have no doubt he will weigh in on this–how he sees his condition, if he sees a condition; what worries him and what doesn’t.
Today he has epilepsy, and he’ll have it tomorrow, too. But he hasn’t had a seizure in a year.
No one around here is exhaling just yet, least of all my son. But we’re celebrating and vociferously marking this milestone.
He may still have epilepsy, but he also has this moment.
And really, if you think about it, this moment is all any of us have.