Protocol

Apparently when I wrote my last post and mentioned something about not getting any of the dreaded phone calls from Nigel’s school yet, I neglected to – you know – knock on some wood. Because the very next day, the second day of school, I had been sitting there at work for merely an hour when the phone rang, and when I saw “school” pop up on the caller ID, I really couldn’t believe it. Already? Aw, hell.

Upon closer, split-second inspection, I discovered that it was coming from Aidan’s school, and I relaxed a little. But only a little. Because when Aidan’s school calls, it’s usually because he’s sick, and I still wind up having to leave work to go pick up a child from school. He seemed fine when he left the house an hour ago! I sighed and picked up the phone, resigned to my fate.

But the call wasn’t about Aidan. It was the school district’s main nurse, who happened to be at Aidan’s school that day. And she was calling about Nigel and his seizure protocol. My heart started thudding as soon as she said it.

Some of you may recall back in June when Nigel had his first major seizure. It was horrible and scary, as they all are, but when the smoke cleared and I had done some research, I was able to identify what might have triggered it, and thus learned how he could possibly avoid future episodes. Nigel stayed with his father for several weeks over the summer, and he made sure to refrain from watching movies in the dark, especially those with flashing lights. He is also learning to employ some stress-reduction techniques, since he was under a lot of cumulative stress at the time that the seizure occurred, and that most likely made him susceptible to it. And (as I make sure to knock on my wooden desk), the great news is that he has not experienced any more seizure activity at this point (that we know of).

But because he had that seizure, the school district requires there to be a seizure protocol on file in case he has a seizure at school. And I’m glad that they require it, of course. It’s a signed document that his teachers must be aware of in the event that he has a seizure in their classroom, so that they know what to do. It’s necessary, it’s important, but it’s unwelcome. Of course, I’m glad that there is a seizure protocol in place, and I approve it, but I wish it didn’t have to exist. I wish my son hadn’t had a seizure. I wish I didn’t have to worry every day about him riding his bike to and from school and having a seizure on his bike. It’s hard enough already. Everything he deals with is hard enough. And now this.

Like it or not, this is our reality. This is the “what now?” mentioned in the heading of this website. This is the latest thorn that has found its way to my side. One more worry in a long chain of fears. And I will just have to face it, like I do everything else. The seizure protocol came home today for me to sign, and we have an appointment next week with his doctor to see if she wants to schedule any more tests. If she does, we’ll do┬áthem, of course. But part of me wishes I could just bury my head in the sand. And all of me wishes that knocking on wood would be enough to keep the electrical activity at bay forever.

15 thoughts on “Protocol

  1. Carrie N

    I understand what you’re saying. (One more worry in a long chain…) You always do right by Nigel, and I think you’re wise to take precautions and talk with his doctor to discuss whether further testing is necessary.
    At the same time I hope you’ll hold on to the fact that most of our worries never come to materialize into what we fear. We’ll pray that Nigel will not have another seizure and that protocol will just sit in his file collecting dust. Hang in there.

  2. Tera

    Yes, the reality. That sticking your head in the sand thing? Uh, yeah, doesn’t work so great…I tried it. Though, what works for one, won’t work for another…just sayin’.

    I’m sorry Tanya. It is hard. It hurts. But you do it so very well my friend.

  3. Kim

    Everything is so hard. Seeing the school # pop up on the phone is a heart sinker for sure, I know that feeling. You are a great Mom Tanya, to do the research, to figure out what may have caused it and to teach Nigel to watch out for those things–you are a great Mom. I will keep hope that Nigel will continue to be seizure free.

  4. Em

    The dreaded phone call. After enough time, every ring made my heart skip a beat. And as more teachers started using e-mail, I almost dreaded checking mail. “Almost”…cause I love my technology! But it does feel like there is always “one more thing”.

    My thoughts are with you on this one.

  5. Lex Savko

    It seems like “what now” is a perennial weekly, if not daily question. Hang in there. It’s good that you’re keeping your actions in reality, but remember it’s still healthy to “believe” that things can and will get better in the future.

  6. Paulene

    If I hear you scream “Give me a break” I’ll understand why.

    Hoping that this gets resolved as quickly as it arrived.
    px

  7. Alicia D

    i definately understand the”worry chain”. that kind of stuff just does me IN! seizures are scary things, no doubt, and i pray he doesnt have any more. all you can do is stay prepared for all you expect and dont expect and do your best. life is always throwing us curve balls. take care of yourself so you can be as strong as you can be to catch those crazy pitches.

    good luck and big hugs

  8. AmyLK

    I do NOT like when I see the schools number on the caller ID. I completely understand wanting to hide your head in the sand when the next thing in a long line of things to worry about comes up. You will find the strength and courage to make sure everything is in place for both your kids. You are strong! You can do this!

  9. DeeAnn Lancaster

    I understand how you feel. When Cody started having seizures recently, I couldn’t sleep at night…worrying that he would have one while he was asleep. I finally bought a Fisher Price Baby Moniter and put it in his room, so I could stay in bed and sleep without getting up to check on him multiple times a night. I am glad that I bought the moniter, because he DID end up having one in the night and I heard him. I does seem like there is always something to worry about, but somehow we get through it. Take care of yourself. I feel for you.

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