Our day started with a two minute seizure.
A seizure which stole energy and joy from him for hours and destroyed my well-laid plans for the day. His short seizures don't physically phase him much. He has one. He moves on. These longer (anything over a minute) events lay us all flat, even when they only two minutes in length. Thankfully I caught this one on camera for his neurologist. She hasn't observed this presentation yet and asked us over the weekend if we could try to catch one. We only caught 10ish seconds of the seizure event itself, which is noted right at the beginning of the video. But also his postical period of slurred speech and confusion is important information to have and see.
After the seizure passed, and I caught my breath again, I proceeded to finish the interrupted math lesson with his sister.
I let him lay on the couch watching Curious George. Honestly, I would have let him watch all day long if he needed to, but after the episode ended he turned off the tv and said, "Okay, I'm ready now." So, upstairs we went to work on his math.
Resilience is his middle name.
After math we went for a walk. The sun is out and it's not too cold. He asked for his wheelchair because his legs still felt tired. Thank God for Medicaid. When his primary insurance denies this very necessary piece of equipment, Medicaid steps in and agrees it is a legitimate quality of life improving need. I actually revamped our schedule this weekend and added a morning walk to our schedule. It makes the naturalist hippie in me happy that we're getting fresh air and vitamin D. I buy into the research that indicates time spent out of doors improves health holistically. Also, it gives us a chance to work on life skills, like getting dressed and brushing teeth, in a meaningful way. Who wants to brush their teeth just to brush their teeth? Much more fun to brush them when you know you're getting a peaceful walk afterwards!
He's dancing around the house now. He's imitating Ferdinand sitting on a bumble bee. Any guesses what we're reading for our literature this week? He is beauty as he dances. He is joy. Life is dripping off of him. You would never know we started our day with a two minute seizure if your only glimpse of him was this moment.
Meanwhile, my heart is working hard to reconcile the heartache with the beauty that each day brings.
2 comments:
Medicaid is a blessing, there is no denying that. I just got done with a very scary period where there was a near loss of Bennett’s Medicaid, a state hearing was scheduled. I think he is still getting it, I have some written evidence that suggests he is, and I think the hearing is now not going to happen. It’s a very difficult thing to navigate.
I get very sad when I see people get angry about the “entitlement” of Medicaid and how we need to cut off people on welfare. I used to try and engage with those people. Now I just don’t think of them as people. Not sure what’s worse.
Every year when Trevor's renewal rolls around I feel my anxiety sky rocket. It's an awful, horrible feeling. Thankful that B didn't lose his. There are so many things we form opinions around about which we know nothing. Thinking that all Medicaid recipients are lazy slobs who don't want to hold down a job is an uninformed opinion. I do wish, though, that the perimeters were more realistically flexible. Or that an independently wealthy individual would offer to cover any bills on our behalf while we try to raise our economic station. So we didn't have to live with always feeling like if we lose Medicaid we'll also lose our house. Sigh.
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