It Takes a Village
By Denise Foster
If you are reading this blog, I imagine we already have something in common. You are a person for whom the word epilepsy is no longer a word that only exists in other people’s lives. I say that because I remember being that “other person.”
Epilepsy had something to do with seizures, right? Having epilepsy was that thing where people shook uncontrollably or maybe stared into space for extended periods of time? I’m going to show my age here, but I even recall learning in a first-aid class that you should put a pencil in the mouth of someone having a seizure, so they don’t bite their tongue! (We now know better.) Well, long gone are those days of epilepsy being 7 degrees removed from my or my family’s life.
My son Ryan was diagnosed with “infantile autism” 31 years ago. After barely wrapping our heads around what life might look like with autism, Lennox Gastaut Syndrome also became part of my everyday vernacular. This is characterized by seizures beginning predominantly in childhood years, EEG abnormalities, developmental delays and experiencing more than one type of seizure. Not one to sugar coat, I believe Ryan’s autism and epilepsy took over any chance of my getting to know who he really is at his core, as every waking moment his autism and epilepsy overwhelm his trapped personality.
Beyond total randomness, I think it is likely that the etiology of both conditions began the minute he exited my body. You see, his birthplace ended up being in our 1992 convertible SAAB on I-270 in Gaithersburg Maryland. After under an hour of labor, my ex-husband had to pull over onto the shoulder of the interstate because baby Ryan was coming out fast and furious! Yes, a bit painful and a huge surprise, but heartbreakingly, I didn’t know at the time the lack of oxygen at birth was going to ruin the trajectory of my infant son’s life.
I often refer to my 30s as “the big sleep” because the only thing I recall doing is working to improve Ryan’s quality of life. Everything else became a blur. If it wasn’t a litany of neurologists, adjusting cocktails of medicines, keeping on top of a school system, or trying the latest and greatest alternative therapy, I was sleeping. Finally in my early 40s it was time to accept the fact that Ryan’s epilepsy was here to stay. I could only control what I could and had to let go of the anger its presence left me with.
Three other children followed. Unfortunately, one of those has significant special needs, but no seizures (yet). They are all in their 20s now and have grown up with Ryan right by their side. We have been there for seizures, on the school bus, in our minivan, at dog parks, at theatres, in the shower, on the toilet, at the kitchen table and for countless seizures in his bedroom. Our seizure action plan remains taped to our refrigerator, but by now we all have it memorized by heart.
However, through all of this there have been and continue to be plenty of rainbows. I have made treasured friendships with school nurses, therapists, teachers, bus drivers, pharmacists and caretakers. It really does take a village. JoshProvides who recently became part of Ryan’s support team has welcomed us warriors with open arms. I rest better at night knowing the Emfit monitor in Ryan’s room is doing its job. Caring for a child and now adult provides opportunity for family growth. Ryan’s siblings have developed an empathy and maturity level that is beyond their years. Younger sister Summer and brother Blake are flexible and adaptive, and they have come to learn that when life gets complicated, they can persevere. As for me, I have learned to accept the things I cannot change, that it is not only brave, but necessary, to ask for help, not to sweat the small stuff, and living with a purpose greater than yourself can bring moments of genuine meaning to one’s life.