This week Epilepsy stole a memory from me. I know that happens to people with Epilepsy all the time, but as someone who does not have Epilepsy, this was the first time I’ve had to deal with it. It stole my memory of the first day of school for Max. Maybe not stole, but definitely altered it.
See, even though Max sleeps through the night, he always seems tired. And all parents know that most of the time tired = cranky. Also, his medication suppresses his appetite so he doesn’t eat much. Which means when he wakes up in the morning, he’s tired and hungry. Not a good combination. Our mornings are full of tears and raised voices and exasperation. The first day of school was no different.
A day that I really want to remember like this:
I’ll actually remember like this:
These rites of passage, like the first day of school, are often different experiences for parents of children with special needs. One blogger, Amanda* writes about sending her daughter to second grade. I really relate to Amanda’s feelings. Back to school is scary and it’s hard work. Not only do you have to prepare your child, but unlike with a typical child, you also have to prepare your child’s school; the nurse, the bus driver, the teacher and sometimes even the other kids.
This Huffington Post Parents blogger eloquently explains what it’s like to have to send your child away to school in order to provide him with the best education and life outcome. She explains what it’s like to have people judge you even though you know that you made the right decision for your family. She really gets at the heart of a decision that is difficult to make and still makes you sad, but is right.
I think my feelings are perfectly summed up in something one of my new favorite bloggers, Kelle Hampton, says about her daughter with Down’s Syndrome. She’s not talking about school, but life in general when she says, “I want my child to be accepted because she is a human being who deserves to be loved and respected.” I think this is what we all feel about our children; me, you, Amanda and Laura Shumaker. But wondering if that will happen, despite all the quirks and social awkwardness our children display makes things like school a bit more scary.
* By the way, Amanda and some other parents started the Dravet Syndrome Foundation to aggressively raise funds for research on this rare form of Epilepsy. Check out the website if you’d like.