I’m usually late to parties, and last Thursday it was Epilepsy Awareness Day. So I’m arriving today. Here’s “what epilepsy mean to me,” as they say.
Epilepsy means that Fiona and this kit are never separated.
Epilepsy means this kit goes into the diaper bag, into my purse, wherever Fiona goes. Because inside the kit is the medicine to stop a seizure if it happens and if it goes on too long.
Epilepsy doesn’t mean that a person who is seizing can swallow his/her own tongue. I first learned this in a Cincinnati hospital after Fiona’s first seizure. That is one enduring myth, I thought. I was 33.
Epilepsy means that, when my husband and I went on a date the other night, and I found this Guide to Troubled Birds,
I thought this bird was perversely funny.
Epilepsy means that my Facebook feed always contains a few posts about kids who’ve just had seizures. And sometimes these seizures have gone on too long, and the medicine (diazepam) in the kid’s kit hasn’t stopped it.
Epilepsy means whenever Fiona has a fever (like today) I have to consider the possibility that she could have a seizure.
So today, epilepsy meant that when I drove Fiona home from school, I had to turn the music down very low so I could listen for a certain rhythmic breathing that means grand mal.
Epilepsy means I still had to keep the music on. For my sanity.
Epilepsy means that when I found these notes I took from a conference, held last year for families raising people with my daughter’s syndrome, I laughed at the top note.
Epilepsy means the top note is of the utmost importance. The closest place to buy beer. Epilepsy means that the parents of the kids with epilepsy later gathered together to drink those beers and not talk about epilepsy.
Epilepsy means that when Fiona is feverish, my husband and I are very, very tired because she sleeps between us, beating us up all night with her 18-pound might, but at least that way we might catch her seizing.
Epilepsy means tonight’s sleep will probably suck.
Epilepsy means I know kids with Fiona’s syndrome who’ve lost language from seizures, who’ve lost aspects of their personality from seizures, who’ve died from seizures.
Epilepsy means 1% of all children in the U.S., 1.8% of all adults.
Epilepsy means I often carry a low-grade fear of the 2-hour seizure. The status epilepticus event. The seizure that will not respond to the kit or anything else, that stays and steals and steals.
Epilepsy means I am unequivocally pro medical marijuana. It has worked in controlling cases of refractory epilepsy when no pharmaceuticals will.
Epilepsy means I very occasionally hear—and this is weird—about the seizure that changes a kid’s life for the better: new babbling, greater core strength. Like the seizure hit a reset button.
Epilepsy means we don’t know. As in, when the very first neurologist I encountered told me to give Fiona the emergency medicine at the 5-minute mark if a seizure lasted that long, and I asked why, and she said, “Because we think brain damage can occur after 5 minutes. But really, we don’t know.”
Epilepsy means that after I gave up Facebook for several days, where I am friends with many parents of kids with Fiona’s syndrome, I logged back on and the first post I saw was about a girl I adore who was just hospitalized for a status event, which had stopped, but now the parents were waiting. Waiting for the girl to wake up, waiting to see what damage the seizure had done.
So epilepsy means that—even though my husband and I are trying to wean our daughter from night snuggles, which she demands in order to fall asleep and which I especially resist because they take from both of us the precious 30 minutes we might have to read a book or watch a Mad Men episode or do something else adult-like and leisure—epilepsy means that we sometimes remember this life’s slipperiness, this ground’s shakiness, and one of us snuggles our girl to sleep anyway.
Yes, just, yes.
Thank you for this post. It is so enlightening for those of us who don’t know what it means. The picture of you two is beautiful!
I wish I had wise words. I do hope she is fever-free very soon.
Reblogged this on now & gwen and commented:
A post about what epilepsy means to a parent.
While Vivian’s epilepsy is controlled at the moment, it doesn’t mean that it always will be. So far we have been lucky to not see any more infantile spasms clusters or seizures, but we may not always be so lucky.
Epilepsy rarely stays the same in anyone.
Hoping that Fiona’s mum is getting some sleep tonight. I thank her for writing this.
Thank you for writing this. It’s hard to remember that not everyone understands the lingo, or that not everyone understands why even a fever can set our teeth on edge.
My daughters do not have diagnoses like your daughter does but so much of this post hits home for me. All three had an unexplained seizure disorder that started in infancy. My worst experiences are: my oldest had a 47 minute seizure at age 2.5 and we were told she would die, my middle girl had 6 seizures the day before we started her on meds at age 9 months and she had a 23 minute seizure at age 9 (an important age we’ve been told that is a threshold for the hope of “outgrowing” seizures). They are now 14, 12 and 8. The two older had their last seizures at age 9 and my youngest had one this year after being seizure free for over 18 months. There are facial expressions and sounds they make that throw me into an instant panic because it sounds/looks like a seizure. It never really leaves my mind. And the neurological impact has not left our family either. My husband, who had childhood seizures, struggles with depression and anxiety. My oldest has debilitating OCD, my middle severe adhd and my youngest suffers both adhd and OCD. All are medicated and under care of mental health professionals. Some days life is very ugly in this house with all of that going on but most days are a mixture of frustration, dispair and moments of beauty and laughter. Thank you for your post. It reminds me how far we have come and how much I have to be thankful for. Your Fiona is beautiful and I wish much joy and blessings for your family.
Yup. I just linked your piece in The Sun, “The R Word,” to my blog: https://marcys.wordpress.com/2015/05/12/retarded/
Thank you. “Birth defect” is such terrible phrase. I’m so sorry you had to hear that one.