Why… How… mostly Why…

I’ve been quiet… too quiet… and I feel very guilty for that.  It’s been a long hard few months and I need to get back to finding myself.

This week, Adam has an epilepsy doctor appointment.  He has been seizure free for 2 1/2 months.  I face September with a sinking feeling… he has been seizing about once every three months… and we are coming up on that now.  I worry.  I can’t do anything about it… but I worry… what if he seizes when he’s on the bus between school and where I pick him up…

Amandya has gotten back to stable.  The absence seizures that were surrounding her gastroparesis treatment have gone away and she is back to being seizure free.  I worry.

Yesterday we were in Walgreens waiting for my Flu shot and my Hepatitis B shot.  While we were there, a woman about my age was there trying to get her first prescription of Keppra XR.  Turns out that Pennsylvania isn’t the only place there is some kind of Keppra shortage.  Go figure.  We got to talking and I think maybe I made her feel a little less like a freak.  I hope so.

She was just diagnosed.    She’s learning the vocabulary of her new normal and reaching out for support.  I hated to disillusion her… our town doesn’t have much in the way of epilepsy support.  It makes me sad.  Given she can’t drive, I didn’t really have the heart to tell her that if she wants support, she should probably suck it up and get someone to drive her 90 minutes south and hope like heck they have something she can sit in on there.

I want to help… I want desperately to help.  But I feel so much like I’m jousting at windmills and only the wind is on my side.


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