A view from my side.
My daughter, Morgan, has been diagnosed with Epilespy. She has short “absence seizures,” what I knew growing up as petit mal seizure. These are the type where there is a momentary blank stare. A second, maybe two, and then she snaps out of it.
She also has myoclonic seizures. These present as a quick jerky movement of the shoulders or arms. To quote an article from epilepsy.com,
Even people without epilepsy can experience myoclonus in hiccups or in a sudden jerk that may wake you up as you’re just falling asleep. These things are normal.
You may very well know of what I speak. But for Morgan, it happens with enough frequency and at the correct times of the day to be officially considered Epilepsy.
I’m learning a lot about absence and myoclonic seizures these days. Morgan is still the sweet, fun loving, care free, happy go lucky girl she always was, she just now has another label affixed to her. She is on medication to help control the seizures and they are nothing compared to the febrile seizures she experienced two years ago that sent us to the hospital in an ambulance.
The simple absence seizures are over so quickly, they are easy to miss. And, it can be easy to mistake for concentration. But, if you look closely, you will see the true “absence” of thought, of recognition, of concentration…of anything. The complex absence seizure includes other motions. Sometimes her tongue will stick out of her mouth as if she is tasting something. Or she may rub her fingers together. Another symptom is a contraction or relaxation of the muscles. She has both kinds and it is kinda spooky.
The myoclonic seizure is also over quickly and if you aren’t watching, it can also be easily missed. It is just a jerk of the shoulders or arm. Like a sudden “shrug.”
So now I keep a closer eye on her. I am a bit more watchful when she is on playground equipment. I know I will grow accustomed to it, but for now, I worry that she might have an absence seizure and fall off of something. So I find myself much closer, ready to “catch” if necessary. What some parents (myself included until very recently) may interpret as “hovering”, I deem necessary.
The absence seizures may very well be something she grows out of. Back to epilepsy.com:
In nearly 70% of cases, absence seizures stop by age 18. Children who develop absence seizures before age 9 are much more likely to outgrow them than children whose absence seizures start after age 10.
Morgan is almost 4. That is encouraging. But also…
Children with absence seizures do have higher rates of behavioral, educational, and social problems.
So now we wait and see. She is sweet. She is playful. She is mischievous. She is very friendly, often walking up to total strangers and asking, “What’s your name?” She is also very well-behaved. She listens when I tell her not to do something. She is very smart. She pushes limits, but that is how 4 year olds learn.
And while this is a condition which she has to deal with, I will refuse to let it define her. I will not introduce her “this is my daughter, Morgan. She has epilepsy.” I will not have her wear her condition on her sleeve. I understand that it may impose certain restrictions on certain activities, but she/we will “learn through living” how to best be Morgan.