A few weekends ago Netflix recommended that Grace watch “High School Musical”.
I was introduced to the movie when Grace was one. She was hospitalized for something like fifteen days as she began the ketogenic diet. The keto diet is a high fat diet that changes how things work in your brain because your body is getting its energy from fat.
It didn’t go well. It threw Grace’s body off. I was with her by myself for a lot of it because Kevin had started a new job. I watched the movie a zillion times it felt like. It was oddly comforting. The words to some songs really got me.
“This is not what I want, this is not what I planned and I just got to say I do not understand. Something is really not right. Something is really wrong and we’ve got to get things back where they belong”
“This is the start of something new”
And the ending song “We are all in this together.” I cried a few times listening to that one.
It wasn’t just the songs. The whole concept that you don’t have to be defined by any one thing is in there.
That movie takes me back to that time in a powerful way. My love for a little Grace, the desperation to do whatever we could, all the cuts on her feet to check blood sugars, my panic that this would be an option that would fail, the absolute wonder I felt when it turned out that if we added 1/16th of a teaspoon of Morton Lite Salt to the formula that she would be able to do it. That’s not much salt – but it had a huge impact. I remember how tired I was from fighting my own emotions. I spent so much time holding her on a hard plastic couch watching that movie where a happy ending was shared by all. It helped me keep going in some way.
We were back on the epilepsy unit this week with Grace. They’ve built a new unit since we’ve been there last. It’s beautiful. There are pictures of dancing all around. In our mind it is the place to be if you’ve got a tough kind of epilepsy. Things for Grace didn’t go as well as we’d hoped. Almost nine years after that keto diet visit I found myself again thinking…this is not what I want, this is not what I planned, and I just got to say I do not understand.
There is so much about Grace’s brain that is complicated. It’s easy to get caught up in that especially when things aren’t going the way that you want. It’s easy to feel like we are helpless and only able to guess at what may work because there are no answers. Unlike the movie this won’t be quickly resolved, but we have a plan.
We won’t let her be defined by one thing. Kevin, I, her doctor, her nurse, her team at school, we are in this together. And there is a whole team of people who make sure there is music and dancing in her life. It’s not exactly a Disney movie, but it’s our story.