Today we mark six weeks–six weeks of Edgar being seizure-free: forty-two days without a single visit from the paramedics; thirty without a single phone call from school; no adjustments to his medications; the most significant conversation with his neurologist a rescheduling of an appointment in June.
Someone asked me today if I could finally relax.
The short answer to that is “No.”
Once you have lived through watching your child have seizure after seizure, once you have witnessed firsthand the extreme and resulting vulnerability, you never really relax.
I still check my phone, my email with (some may say obsessive) regularity. When the phone in my classroom rings, the pit in my stomach involuntarily returns. When I hear the sirens of an ambulance, I think “What if?”
I still observe my son, watching for the signs.
And while certainly as each seizure-free week goes by, I feel relief and gratitude, I don’t take a single milestone for granted. I can’t–because if epilepsy has taught me anything it’s that life can change in a second. On October 10, 2011, Edgar did not have epilepsy, and on October 11, 2011, he did. That is our new reality.
So, when will I finally relax? Well, as a parent, I’m guessing never. But in terms of Edgar’s seizures, maybe after twenty seizure-free years. Maybe.
In the meantime, though, we will celebrate each day that the seizures stay away and continue to work tirelessly to raise epilepsy awareness–for Edgar, of course, and for all people living with this reality.