It’s currently 9:15 in the morning, and Lexi has slept a total of 2 hours, max. It’s times like this that are the hardest to stay positive. Maybe this is a normal baby sleep thing… or maybe this is the damage to her brain. So many times over the last 10 months we’ve told her doctors that we’re worried something is wrong… even as a newborn, she slept maybe 10 hours a day, most of that in 45 minute stretches during the day. The hardest part is constantly questioning yourself… wondering if you’re doing something wrong, because how can you be trying this hard to get her on a sleep schedule that doesn’t suck and failing this spectacularly? We have this schedule written on our fridge. It’s this beautiful fantasy where Lexi is in bed by 9pm so we can maybe, for the first time since she came home from the hospital, have some grown-up time, alone, in our own house. Some days I think I would sell my soul for some time without her to reconnect with my wife, cuddle our puppies, and relax. Since Lexi moved into her own room, I’m not even able to relax when I’m sleeping. I feel like at least once a week I think I can’t go on like this. Things can’t continue the way they’ve been for the last 10 months. I’ve never been so miserable as when I’m running on only a couple hours of sleep, and Lexi just won’t go back to sleep and I don’t know what I’m doing wrong… and I don’t know what I did to deserve this.
I never thought I would be the parent of a special needs child. This is something that happens to other people. It doesn’t happen to people you know, and it doesn’t happen to you. And yet… here we are. And it’s hard, not knowing how things are going to be, worrying constantly. Her seizures are still not responding to medication. We see her neurologist Tuesday, and unless they suddenly stop between now and Tuesday, he will be declaring a second medication a failure. He only has one more medication in mind before we enter unknown territory. But who am I kidding? Every day is unknown territory.
The thing that bothers me the most, to this day, is that we didn’t know. And even if we had known, there is absolutely nothing they can do besides watch it happen, and deliver the baby early. There is no way to check the placenta or cord size, or at least it isn’t done. So many ultrasounds and yet, 4 days before I was induced there was no indication of a problem, except that she was small. People have small babies every day. There has to be a better way of handling it… there has to be some way we could have known.
But the truth is, when you’re dealing with hypothetical scenarios, you’re full of bravado. Full of “there’s nothing we can’t handle” and “there’s nothing that would change our minds.” If I had a nickel for every time some well meaning person has told me “God doesn’t give you more than you can handle” I’d be quite rich. They’re wrong, of course. Because the darkest, most naked truth, is some days I’m not sure I can handle this. I’m not sure I can handle having a special needs baby. I’m not sure I can handle the unknowns, and the worry, and the fear. Some days I’m not sure I can even handle getting out of bed.
But you do. Somehow, even if you feel weak, even if you feel like it’s all too damned much, you get out of bed, and the day moves forward, and you survive it, and you go to sleep, and you wake up, and you do it again. And sometimes, in moments like this, I’m not sure that’s a kindness. Because sometimes, in moments like this, I feel like one more day, one more thing, will break me.