A little over 6 months ago, I went through the rigamarole of trying to get Lily's life saving medications allowed at school. Since there is no precedent, no previous case of adrenal insufficiency- hydrocortisone is not on the formulary. It took weeks of phone calls, meetings, research and canoodling to get her meds in the health room. Even then it was strictly stipulated that although her shot could be kept there- legally there was no one there who could use it. yay.
A few months into it- I kept getting calls from a new health aide at school. She had Lily's number and wasn't afraid to use it. I would hop in and assess the crisis. By the 3rd call, I felt perfectly comfortable letting her give me assessments via phone of Lily's condition which could aptly be summed up as "attention seeking". She told me that she had daily visits with Lily, but unless she had the symptoms I told her to watch for, she usually sent her back to class. Finally, someone who knows what they are doing. For every door closed, there is a window- and Ms. Stacey lets the sunshine in to an otherwise crappy situation. Most of all it's nice to feel comfortable with the person who is the liaison between your child's health at school and the school. She knows the rules, she identifies that many of them lack common sense, and she always considers the childs needs. I like that. I call it common sense. There's an idea.
I am not the type of parent who gets all weepy on the first day of school. I love my kids. I miss them when they are gone, but school is a normal progression. I know parents get stressed about the what ifs and their children's welfare at school. And they have normal kids. without life threatening conditions. Even after I got Lily situated- I worried she would get sick, but I felt comfortable she would bring up any needs she had and demand to call me. This morning was so hectic, I had but a moment to pause and contemplate the irony that I packed 2 emergency care boxes- one for Phillip's classroom, one for the healthroom-and promply shoved them inside a Big Island candy bag to transport to school. I don't know- I guess I could have used the Baskin Robins bag. I was slightly surprised then today when I paused after a 20 minute brief with Phillip's teacher and another 20 minutes with Stacey and 10 minutes with his counselor- the sheer panic I felt walking to my car. The what ifs decended on my chest and started pecking away like a hoarde of hungry birds. So this is what it's like. I do not like this at all. I know it will get better. We have already settled into a routine.But this is pretty stifling.
I sit and marvel that I had all the information on Lily's condition- I felt comfortable and was ready to educate the school with a clear matrix of possibilities and solutions- and it took so long to get it all in place as a patch job to make sure I was comfortable with the school's accomodations. Phillip has been diagnosed for a week- I take him into school and because of an IDEA(Individuals with Disabilities Education Act)- every one does everything to accomodate us. This means that he should not be discriminated against because his pancreas doesn't look or work like other kids'. It means that his life saving medicines can be kept at school and have to be used. It means that enough kids and their parents have continuously butted their heads against the same walls I did with Lily- that legislation was proposed. I am grateful to not have to bang my head against the wall for this reason. The irony doesn't escape me. Too bad there's not a candy bag somewhere to shove that in. I might be able to find one if I had the time to look. But for now I have to wrap up- it's time to run back into school to check on blood sugars.
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