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The Cost of Seizures isn’t Always in Dollars
Today, Logan stayed home with his father and I. In fact, he stayed home the last three days. But today–today was important because it was supposed to be the last day of school for Logan and his brothers.
To be honest, he didn’t miss entirely because of the seizures he has been having all week. He has been sick to his stomach as well. Miserable.
But the seizures. Night after night, he fails to sleep well due to having a seizure or several interrupt his sleep. Late yesterday afternoon, I sat before him and moved him into the recovery position — I moved to lay in front of him on the floor and watched as he turned blue even though he was taking slight breaths. I prayed. And I cried for the first time in a while.
Epilepsy has cost my son so much. Beyond missing the last day of school; beyond the dozens of missed days of school; beyond the interrupted plans and family outings thwarted; and beyond the juggling of phone calls and specialist visits. Beyond all of that stands my son, and it has cost him, personally, so much more to be at the mercy of this monster.
Seizures = Lost skills
When he has a seizure, he might stop breathing. In fact, he tends to do so during the majority of his seizures. Do you know what happens when a child stops breathing? Within minutes a lack of oxygen in a child can cause brain damage and even death. Four minutes until permanent brain damage. Six minutes until death.
Logan’s seizure yesterday afternoon lasted 3 minutes. He only took a breath after the first minute, and then only fleetingly thereafter until the seizure ran its course. I was very close to giving rescue breaths.
In the past, Logan has showed a marked decline in his gross and fine motor movements (i.e. walking, grasping something, even just sitting) after seizures in which he doesn’t breath. Even if we give the rescue breaths. Even if we do everything right. He still loses skills he worked hard to gain.
Seizures = Lost happiness
I think this almost goes without saying. But imagine, for a moment, that you are a child who has a hard time expressing himself. The world around you is a fast-paced and sometimes overwhelming place to call home anyway.
Then add the confusion of suddenly losing all control over your body, being unable to warn someone or talk with them afterwards.
Is it any wonder he wants held after his seizures more than any other time?
Seizures = Lost interaction
Logan misses a lot of his world anyway, either by choice or as a result of his autism. He has a harder time connecting with people. Oh, he’s a charmer and a sweet kid with a bright smile and infectious giggle. But only after he’s gotten to know you.
That said, he’s still extremely social for a little guy with so many social issues. Missing that ability to go out in the world, to just have fun and be a kid, to interact with other kids–that’s a cost that is hard to quantify.
The real world of epilepsy
Epilepsy, for all that awareness has grown over the last several decades, is still largely misunderstood. I’ve lost count of the number of people I have had to tell someone that Logan wasn’t just acting silly, that he was actually having a seizure (I might not have been very nice about it).
As much as I want to raise awareness and I want people to understand what it is like for not only Logan, but for us as well, it’s not an easy wish to make or grant.
I remember a couple of years ago we went to a family reunion and it was a fairly hot day. Heat is one of Logan’s triggers. And he ended up having a doozy of a seizure. In front of the whole family.
As horrible as it was for them to have to share that reality with us, we told ourselves that at least they had an inside look. At least maybe they could understand, after seeing him in the midst of a seizure, why it was so scary and all-consuming. Why we didn’t always make it to family gatherings.
There weren’t enough platitudes I could tell myself, then or now, to ever make that experience okay or worth having. There is no up-side to having had a seizure in front of the people who would be the most haunted to have seen it.
See, the real world of epilepsy isn’t even close to the after-school special or sitcom imaginings. In fact, most depictions of seizures on television aren’t even realistic. Most seizures are not grand mal seizures, which are the dramatic ones usually depicted on TV.
In reality, epilepsy is scary, confusing, and not an easy thing to live through or describe to others.
In fact, in our reality of epilepsy and autism and all the combined joys of many diagnoses, it’s a very surreal place to call home.
So I’m all ears:
Tell me about your life – what is surreal about it? What do you find difficult to explain to others?
Do you or someone you love have seizures (share your story)?