It’s Been Four-and-a-half Months

It has been four-and-a-half months since the news about Lydia. In some ways, I’m better than the ‘worry stage’ of her very early days when I was the only one who suspected something was terribly wrong. My advice to all fellow worriers– don’t bother. The stress of imagining the worst possible things over and over didn’t help Lydia at all. Just about the worst possible thing I could imagine was totally true anyway. By the end of that day, sitting in the hospital after her MRI, I found myself wishing it had been a brain tumor. That feels awful to say. But I thought that at least with a brain tumor there was something you could do. An operation maybe. Something. But brain malformations are untouchable. Inalterable. Set for life. This is not something I could have planned for or prevented.  The ultrasounds were normal. The pregnancy was normal. The birth went fine . . . In the days immediately after her MRI, we were very focused on finding a diagnosis. But this turned out to be less important. The real fat of the problem has been to get her seizures under control. Seizures, seizures, seizures. I knew next to nothing about seizures four-and-a-half months ago. The thing is, even without the brain malformations, seizures can be devastating. Maybe worse than the brain malformations, though I am sure they are connected somehow. Four months ago she was having twenty seizures a day. Now she is up to seventy, sometimes over a hundred a day. They happen so often that they are just a part of my life with her. I get on with changing her, bathing or reading to her, right through her seizures. But if we can’t stop these, well, we’re looking at zombie-town. Institutions. No baby Lydia in there. Mark won’t let me say those things. They are ugly. Worst case-scenario. He doesn’t think that way. He’s a natural optimist. But even as a pessimist, I think we’re going to get a handle on her seizures with the Ketogenic diet or medical marijuana or whatever the hell we have to do, and then we’re going to get somewhere with her. Take her off all the handfuls of medications that are making her so foggy and not working anyway, and wipe away the cottonballs to find a little girl in there. She’s going to laugh someday. She’s never ever going to be able to do the same things as other people but she’s going to get better in her own way. I have to believe that.

Once and awhile she’ll have her eyes wide open and she’s alert, making just a little Mona-Lisa smile and I’m singing to her or talking and I feel like she’s on the verge of communicating something to me, just about to reach out. Then she’ll suddenly be hit with seizures. Watching them take over her body, I feel so helpless, like she’s on fire in my arms and there’s nothing I can do but hold her and rock her. After the seizures stop, her eyes go dull and she’s back in her fog. I have to keep wondering what she was about to say. Is she comfortable in there? Is she suffering? Please don’t let her be suffering. I couldn’t take that.

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