Ok, it's been more than a minute. I looked at the date of my last post and it's been...years? Has it really been years?
Life with epilepsy is tough again, and I need to write. Maybe it will help someone - maybe nobody will see it. Either way, it's therapy for me.
He did...ok, during middle school. He wasn't plagued with seizure clusters like he had been in elementary school. He hasn't been hospitalized for seizures for years. But he has had enough of them - and accompanying post-ictal weakness - to have a lot of school absences. I kept wondering if they should really pass him each year in middle school; he kept falling further and further behind.
And now he's in 9th grade. Today started their 3rd week. He's already missed 2 full days of school, and several other periods, due to both seizures and the chronic constipation issues. Today I got a call that he had another seizure during P.E. The school nurse wants me to consider having him drop P.E. because he's had several seizures during that class. I understand, but it is his FAVORITE class. For a kid who has to do so many things he doesn't want to, and not do so many things he DOES want to...that's a big thing. My heart hurts just thinking about taking it away from him. Yet another thing epilepsy is robbing from him.
I looked at his gradebook online yesterday...F's across the board. Assignments missed. Quizzes he can't make up, because they were for present students in class that day. Bodies of information he is missing. And I sit and weep because I have no idea how I will ever catch him up. I work full time, too. I don't have a partner. And his dad, though he is involved, works full time as well.
I have gently asked Aaron to do online school. For a child who already feels different and isolated because of his illnesses, this is like asking a 3 year old if you can have the cookie back.
No. He doesn't want to do online school. He wants to be with other kids, even though he suffers. Even though he knows at any minute, his body could go weak, then rigid, then make him fall and convulse and maybe hurt himself badly...he wants to be there.
So I look at the gradebook and I take one assignment at a time and I help him and know it's like trying to turn the ocean red with one dropperful of color. I wonder if our time and effort even matter.
It is hard not to feel like I'm failing. I know that I need to find my victory in the fact that he still wants to TRY. But it feels like I am just losing all the time. And I can only hope that he doesn't feel the same way, because it already kills me know what he goes through all the time.
