It’s Been Six Months

It’s been six months since we learned about Lydia’s brain malformations and seizures. How are we doing? Well, I have one big confession that I need to make and then it is up from there.

Lydia doesn’t smile like she used to. I’m sorry but the big grins are gone. They left with the carbohydrates and sugar she used to eat before the fat-focused ketogenic diet. It stabs me a little to write that. When I think back, I regret that I don’t have a photo of each and every smile. Still, she seems happy. Now she smiles with her eyes and body instead, or offers a subtle upturn in her mouth like a little Mona Lisa. Somehow she finds ways of encouraging us and making it all worthwhile.

The good news since the keto diet is that she’s been much more awake. She used to spend no more than a few minutes with big, bright eyes, she now spends an hour or more. Her eyes are a color I can’t identify. I think I’ll go with gray although really they are greenish-bluish-brownish. They still might change and settle into more of a brown. I am content to keep watching.

Although her seizures have not reduced in frequency, they are more predictably clustered around times when she is waking from sleep. These seizures are intense left-right-left dances. She also still has random ones throughout the day. These tend to be more of a sudden stiffening sometimes brought on by being startled. At these times she is my little fainting goat.  She smells like cookies from the keto formula.

We’ve stopped feeling like she is going to die at any moment, so that’s good. When we first heard the news we weren’t sure she would make it through the winter. We knew so little about what was wrong with her and her first geneticist suggested that she would probably expire with her next cold. Well, I guess we still don’t know what’s wrong with her but she seems to be made of tougher stuff than suggested. She’s had a few colds and they’ve barely ruffled her feathers. So we expect to keep her awhile. We’re getting used to her.

I suppose that would be the summary of where we are at in our mourning. We’re getting used to her. I know very well that once you get used to one thing, something shifts and sends you into a new tailspin. Mark tells me this from his experience of watching his dad die of cancer. And then his mother. Brutally unfair. So I’m trying not to get too comfortable.

Six months ago, when we drove away from the hospital that day, I told Mark I would never be happy again. In some ways I still know this to be true. But lately, little by little, I can see that it is just a different kind of happiness. A happiness that has seen some serious stuff. Actually, happiness is a crafty word that makes me feel like I’m missing out on something no matter how I feel. Okay-ed-ness is much better. What I mean to say is, after six months of thinking we would never, ever be okay again, I can now see that we’re going to be okay. The kind of okay you are when you’ve seen some serious stuff.