My Guide to Epileptic Parenting

Peeing on a stick does not prepare you for pregnancy—much less motherhood. So, I waddled my newly bulging belly to our local public library.  Squeezing through the narrow aisles, I found myself overwhelmed by the plethora of ponderings on pacifiers, prams and pull-ups.  My towering pile of books nearly toppled as I balanced them on my protruding abdomen.  At home, I scoured their pages for the Rosetta Stone to Parenting.  I perused these expert volumes with titles similar to “Rock a Brainy Baby: Lullabies to Raise Your Child’s IQ”; and my personal favorite: “A Rainbow of Flavors: Decoding the Colors of Your Baby’s Poop.”  Well…their titles went something like that anyway.

Over the next ten years, my husband has often found me curled up, dozing, a quiet snore rustling the open pages of my latest Cure-All Guide to Parenting Woes and Mommy Anxieties.  Of all those books, I have yet to come across the one I truly want to read, possibly entitled: “A Guide to Epileptic Parenting: Comforting Your Kids When You Shake Like an Earthquake.”  Now, there are many books on how to parent a child with epilepsy; not so much on how to be a parent with epilepsy. Being a parent with epilepsy is not something most moms prepare for.  Most 30-somethings don’t wake up on the floor in the middle of the night, confused, their husband urging, “You’ve had a seizure.  I’m getting you to the hospital.”  My response to him: “No, I didn’t.”  But, yes I did.  I endured an MRI, CAT scan and multiple EEGs.  Those coupled with another grand mal seizure all pointed to the undeniable conclusion that, at 37 years of age, I was the oddball out—or more appropriately, my brain was.

Things changed.  No more sports chauffeuring.  No more solo runs to the grocery store.  No more solitary swims or private baths.  With no nearby train or bus, the loss of driving hit me hardest.  I had grown attached to my car and taking care of my family with it.  In college and graduate school, I had walked everywhere, carrying my books and groceries home in my backpack.  But, carrying groceries for one is much different than carrying groceries for four.  Walking a mile to class is much different than walking six to soccer practice—particularly with two young children in tow.  Who I was, what I did as a mother, as a wife, changed and I didn’t have a how-to book for it.

How do you explain what a seizure looks like to a five year old?  Mommy shakes like in the Hokey Pokey except I fall down first like in Ring Around the Rosie.  Mommy breathes like Darth Vader, but don’t worry, I am your Mother.  I just need your help…and I did.  We practiced drills for calling 911 and dialing Daddy.  Interesting thing: my kids helped me that year, not by calling 911, but just by being kids in the most normal of situations—our daily trek to school.

School was the one destination close enough to walk to.  Some days, it was like herding snails.  Others like chasing cheetahs.  But, everyday held surprises—from the first and only time I ever told my son to “get off that fire hydrant” to the 100th time I asked (yelled at) my kids to stay away from the curb or wait to cross the street with me at the corner.  There were hard days, days when we walked the three quarters of a mile in the pouring rain without an umbrella for myself.  Arriving at school that day, wet hair slicked against my cheek, my daughter smartly advised me, “Mommy, today would be a good day for you to braid your hair.”  So I did.

But, there were also days of laughter and memorable conversations like:

“Mommy, when you were little, did you play games on the internet a lot?”

“No. There was no such thing as the internet.”

“So, did you just use your computer to email your friends and stuff?”

“No. There was no such thing as email.”

“Mommy, I’m sorry you didn’t have internet and tv and stuff like that.”

“We had TV.”

“Mommy, when you were a little girl, did they have streets?”

Then came another rainy day when I could finally drive again on those streets.  From the back seat, I heard, “Great job Mommy!  Good work!  First time driving in six months!”  I cried.  “Mommy, those are happy tears, right?”  Yes, they were happy tears.

I know that one day, I may have another seizure.  I know the early mortality rate among epileptics is eleven times greater than the general population.  The risk of sudden death is twenty-four times greater.  But, I also know that I can continue to enjoy motherhood.  I can continue to be a mother.  I still haven’t found the Holy Grail of Parenting.  Maybe one day I will write it myself.