Lather, Rinse, Repeat

Or rather the last month has been: seizures, increase med dose, wait a week, repeat.

I'm not sure why I set one week as the arbitrary amount of time Wes needed to go without having a seizure for me to feel some relief. It seemed that if we could make it a week, we could count on the medicine working and our lives going back to the way they were before. One week. So after the initial weekend of seizures, we went from 1 ml of his seizure med to 2 mls. We made it 6 days. Then we went to 3 mls and made it 8 days. Then we went to 4 mls and made it 7 days. Then four more seizures today.

So now what? Now we head down the road of combining multiple medications hoping the side effects are tolerable. This seems like the unconquerable road. It seems like a place to just plop down and despair. But there is always a bigger picture and there is always some much needed perspective. There are many many children who have more seizures, more severe seizures, and more frequent seizures. Even in the world of childhood epilepsy, it could be much much worse.

I've been thinking often about that saying "there is always someone worse off and there is also always someone better off." The intention, I think, is to remind us to be grateful that things aren't worse and yet not diminish the pain we feel. In reality, it seems to encourage us to measure ourselves against everyone around us, filled with jealousy for those whose lives seem wonderful and guilt compared to those whose lives seem worse. We all struggle and trying to compare our struggles or determine whose "wins" in the severity category. This principle is unfair to our own grief and to theirs. Looking through my Facebook news feed I see a family struggling over the loss of their loved one after a hard fought battle with cancer, quickly followed by a new picture of a beautiful newborn baby being held by an exhausted new mom, followed by the lonely comments of a teenager in angst. It brings new life to the quote, "Be kind for everyone you meet is fighting a battle you know nothing about." When my current battle is most intense, it's easy to start pitying myself. To start feeling like the rest of the world has it better and I'm the only one who struggles. How neive we are to compare ourselves. Each of our pain and grief is real to us. The problems lie when we either get trapped in grief and succumb to self pity or we deny ourselves the right to grieve and therefore get overtaken by the pain locked inside.

So I'm heartbroken, yet again, that Wes is having seizures. I want to cry or cuss or both every time I see his little body stiffen and this terrified look cross his face. Yet tomorrow I will pick myself up and stop by the pharmacy to pick up his new medication on our way to his usual therapy appointments because life goes on and so will we. And for tonight, I will enjoy the snuggles while I can get them and wish for the days when he will once again be too squirmy to snuggle because he won't be having post-seizure crash naps.

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