My first year of teaching, I coached the dance team. The dance season is eternal, beginning in August and ending in March, while you watch all other coaches start and end their seasons, you keep going. It was hard on a first year teacher, on a newlywed, not getting home until 8:30 every night my husband keeping dinner warm in the oven, falling into bed exhausted getting up and returning to school just eleven hours after I left. So immersed in it I was that I felt like I spent my entire day doing eight counts in my head (one and two and three and four). At this in my life, this time of constant eight counts, I realized that both sets of stairs in our house take exactly eight steps to get from top to bottom.
I know. I know you're wondering what any of this has to do with anything, but I hate that sickening lurch in your stomach when you're going down the stairs in the dark and you lower your foot expecting another step, only it crashes down through thin air before finally meeting the floor? Or worse when you think you're all out of steps but really there's one more and you stumble and fall and lurch? So I count steps. One and two and three and... well, you get the idea. I count steps because I hate that feeling, that lurch, that momentary uncertainty when your brain isn't quite sure what's happening.
That's how our life has felt since Tommy's seizures, and I feel like I've been doing a constant eight counts to find my way back to normal. Except that I'm realizing that our life is a new normal, a new brand of eight counts, finding normalcy in all the things I didn't know a month ago. I didn't know the sting that's felt when a doctor tells you your child was probably just having a temper tantrum, when you feel like you're being judged for making it up because he looks just fine now and you have to FIGHT and use words like "absence seizures" and "grand mal" and tell her how you saw him fall, how he was smiling at you and then BAM, just hit the ground like someone had turned him to stone to make her believe you. I didn't know that my calm parenting, the mom who never checked to see if her babies were breathing, would morph into someone who tiptoed into the nursery 1, 2, 3, 4, 5, 6, 7, 8 times a night to place an anxious hand on the rising-falling chest, counting breaths and heartbeats. I didn't know how my always calm, even-keeled husband's voice would reach a frantic level of panic when he thought something was horribly wrong with our child. I didn't know what it'd feel like later, in the quiet of our bedroom to admit that we both thought his blue lips meant he was dying and that in that moment, we both felt like our worlds had stopped and would never start again.
I also didn't know that November is National Epilepsy Month, but I know now. Because Tommy's seizures are inexplicable, he was diagnosed with epilepsy. I never knew this. I thought epilepsy meant having a seizure in reaction to flashing lights, but actually, it can mean so much more. I didn't know about the eight counts away from the last seizure (October 16), but I know that in our new normal, each seizure free day is more beautiful than the last.
This is the face of epilepsy.
He's in good company.