The Struggle Is Real



Remember my story about my girl having a couple of seizures last summer? Remember my story about how hard it was for her to go to Mass during the summer? Well, the saga continues to unfold.

School has been very hard for my girl this year. She continues to fight the anxiety and fear that she’ll have another seizure, and she’s terrified of the possibility that it will happen in public, in front of her friends and classmates. So we worked with her school to place her in “Home and Hospital Study.” Instead of her going into school, a teacher came to our house and tutored her through two classes. She did marginally well with that program, but its time ran out, and we wanted to help ease her back into the building.

So now she is on a truncated schedule. She has only two classes and study hall. Each class runs for 90 minutes, but she has to spend only 30 minutes attending. After that, she can excuse herself and go to the guidance office. She doesn’t typically make it for that long for the first class, and she is more likely to miss the second class altogether—and sometimes even study hall. We’re letting it go for now. Just getting her into the building is a big step, and we’re so proud of her for making it this far. It’s been an uphill battle, but she keeps trying to fight the “beast” of anxiety and fear.

She’s Still Fighting.

So take a look at the picture up there. That’s my daughter just before leaving for school this morning. She has a backpack, two reusable shopping bags, and a purse (which you can’t see). All four are filled to near capacity. For just two classes.

No, it’s not homework. No, it’s not textbooks. No, it’s not notebooks and papers and classwork. One bag contains as many sketchbooks as she can fit in it. They’re for her to leaf through while she’s in the guidance office. The other bag contains her most valuable Pokémon plushes. They’re for her comfort and peace whenever she gets anxious. Kind of like Linus’ security blanket. The backpack? I have no idea. A huge binder with only a few papers from her Latin class, maybe. The purse? Woman things, I’m guessing. I know not to ask.

All this luggage proves to me that she’s still fighting. We’ve had setbacks, but she’s still fighting. She had another seizure a couple of weeks ago—out of the blue, dammit—and that set off a new wave of anxiety. But she’s still fighting. She has days when she absolutely doesn’t want to go to school, and it takes everything she has to get her there. Sometimes Katie and I are too tired, and we let her stay home because the effort can be so wearing. Sometimes she fights harder than we do; other times, we fight harder than she does. But the trajectory is positive. Because she’s still fighting.

I don’t know how long we’ll have to fight. I suspect it’s going to be quite a while. But that’s okay. I’m just grateful that she understands that she can’t give up. Even when she wants to give up. Even when she begs us to let her give up. She still knows it’s not the right option.

6 thoughts on “The Struggle Is Real

  1. What an amazing story! Your daughter is so strong. I know how hard it is to beat anxiety. She’s amazing for fighting continuously. I hope it gets better soon and she has the courage to get through a whole day, I’m so proud.

    The unanimous blogger xxx

  2. You do a nice job of summing up what so many families are battling with daily! Thanks for continuing to share. The struggle is real. It is a big deal just to cross thresholds!

  3. Pingback: Failure Is Not an Option | autismblues

  4. MIT has been working on a watch that measures galvanic skin response. They discovered that it can predict a seizure and warn both the person who might be about to have a seizure and can send a text warning to a parent or teacher. It may be ready for market! People also have therapy pets who can sense oncoming seizures. Courage plus technology?

    • I’d never heard of the watch before–sounds great! As for the therapy pet, we’re working on that. You have to train the owner as well as the pet, and that’s something we’re looking at.

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