Tuesday, March 23, 2010

My Heart Broke A Little Today

I guess I have finally gotten used to "our normal" and have started forgetting that "rescue" meds and anti-seizure meds and constant observation for activities that could be dangerous if a seizure were to happen and constant observation for signs that a seizure might happen are not normal to everyone. Like I said, for us, it just is normal.

Bradyn is a normal kid that does all the things any other normal kid does, we just medicate him and watch him and live our life. Don't all parents watch their kids constantly and pay attention to every little action, every facial expression, every body movement and wonder if everything is okay? No? Yes (to an extent)? I don't even know any more.

Kyle has been home with Bradyn for most of his life so I haven't had to talk about the meds or the watching or give anyone instructions. We just kinda know that we are both on the same page. We write down what Bradyn eats, what time he gets his meds and if anything weird is going on so that we can have an accurate picture for his appointments with his doctor. But other than that we just live.

But this week Kyle went back to work. I'm happy for him. He was ready. He was hungry for adult interaction and ready to get out of the house. Bradyn is ready as well. He wants friends; he gets bored being here with Kyle and I all of the time. So next week he starts pre-school. I took this week off so that I could spend some time with him and so that I could take care of all the prep stuff that needs to happen in order to get a child into pre-school. There was the mountain of paperwork, the vaccinations, the shopping list and the intake meeting this morning with the school director and the teachers.

The meeting went well. I love the school and the teachers and Bradyn is so excited about going to play with “the people". But it was a painful reminder that our normal is not really all that normal. The director was concerned about B's "rescue" med. This is a med that he doesn't take often but needs to always have on hand for an emergency. If he has a seizure that lasts over 6 minutes then he gets a suppository and it helps his body stop. The major concern was around the fact that it was a suppository. They don't have anyone on staff that is "qualified to administer rectal medication."

She wanted to know if I could ask the doctor to write a prescription for oral medication - "No, if his little body is seizing, his jaw is clenched and his throat muscles are closed, a suppository is the fastest way to help him".

She wanted to know if they could call me and I could administer it - "No, if he is in the middle of a seizure that has already lasted for 6 minutes I don't feel that the humane thing to do is call me and then wait for me to run to my car, drive across the street, race into the building and give him medication that he could have had 15 minutes ago".

She wanted to know if they could call 911 - "No, the last time we called 911 it took 20 minutes for help to arrive".

I know there are other families like ours out there. I know that there are other children in school that deal with these types of medication issues. How do they manage through this stuff?

In the end, we worked it out. In the end, she agreed that if I got a note from Bradyn's doctor (done) then she or the assistant director would administer the med in the event of an emergency.

I’m sure that I would be having this conversation no matter which school he was going to and I completely understand the fact that she has to protect the school and blah blah blah. She was very nice about her concerns and we worked it out fairly quickly, I'm just sad. Sad that I had to have the talk. Sad that Bradyn doesn't just start school like all the other kids. Sad that I get upset and can't express my thoughts and feelings exactly the way they sound in my head.

In all honesty, I'm feeling guilty. As the mommy I’m supposed to solve the problems. If this one, this one that was really so minor, felt so over-whelming, made me want to go home and cry.... How am I going to handle the big problems, the truly overwhelming ones that come along?

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