The Terrible, Horrible, Really Awesome Day

What a day, what a week, while we are at it, what a year. The most significant part of our life recently isn’t complications from Rett (that still contributes), rather my Crohns Disease has been problematic.

I’ve struggled with energy, intense pain and the isolation that comes with spending more than half your waking time with a toilet. It’s all a blur, but here is the strange part, I feel great. I should clarify, as I type I am in great pain but if I ran into you in the parking lot in 5 minutes, I’d tell you I’m good and I would really mean it.

It’s been that day that the rain poured hardest just as school got out and the last disabled parking space got taken just as I pulled in. I had to sit in soaking wet pants in the middle school traffic because I forgot to take the other way home. Also, I found out that our fabulous teacher has decided to teacher summer school (it’s a BIG deal) and my new sweats from the Gap had just been delivered while I sat in traffic.

So now I sit, in my comfy sweats, listening to Chloe practice with her adorable youth orchestra while Claire happily listens to her own music. I’m not crying because I am in a room full of girls Claire’s age, using their hands ever so delicately. Nobody in here will know how truly badass it is that I can sit here with dry eyes but that is just fine.

I wondered what life was like after adventure, the normal is really hard but it is insanely beautiful. There was an illusion that vulnerability came only with the big adventure but I am learning it’s a choice that is always available. Sometimes it is just being sick when you are sick and letting people help. They all seem like terrible, horrible, really awesome days and I think I am starting to like it.

 

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