So my posts in the past few weeks may not have been the most interesting things in the universe. Some of them have probably bordered on boring. That's because we haven't had a whole lot going on around here. But you know what? I kind of like boring. Especially when the alternative is the kind of day we had today.
The short of it is that Connor had eight seizures, we used pretty much every form of emergency medication available to us at home, and then he spent the rest of the day sedated and sleeping. He's been asleep now for about nine hours-- since around two in the afternoon.
He's not running a fever. He doesn't seem to be sick. He hasn't gained a ton of weight or been under a whole lot of stress. Yesterday he was fine. Today he spent in an exhausted, seizure induced half-coma.
So we have absolutely no idea what tomorrow is going to look like. Either Connor will make a mysterious and miraculous recovery and we'll have no idea what the heck that was all about, or we'll go to the hospital. It's going to be one of the two, and while I'd really like to think it's going to be the former I get the feeling that I should probably go ahead and pack an overnight bag.
It's been a good run-- we've gone about four months without being admitted, which is a relatively long amount of time for us. It's pretty frustrating, though, to continually get blindsided by this sort of thing. I mean, one day the kid is fine, and the next-- BAM!-- he's not. Sometimes I can almost manage to forget that we have a child who could literally die on us at any moment. Then we have a day like this and reality comes crashing back in.
When we first got the news that Connor was going to have some serious medical issues, when I was halfway through my pregnancy, I remember reviewing everything I'd eaten over the past four months. I'd picked some blackberries on the side of the road one day; had they been covered in pesticide? Did I not drink enough water? Did I exercise too much? I was looking for someone to blame for the fact that I was most likely going to lose my child, and the easiest person to blame was myself. I absolutely did not cause Connor's disabilities, but it took the results of a genetic test several months after his birth to completely absolve me of the last of that guilt.
I find myself having to be really careful not to do a similar thing with Connor's seizures when they come on so suddenly like this. Did I leave him in one position too long? Feed him too quickly? Logically I know that there's no way I could have caused him to have them, but it's difficult to get rid of that magical thinking because of the other side of the coin: if I caused him to have seizures by leaving him in one position/not paying him enough attention/singing the alphabet song backwards/insert completely ludicrous activity here than I can magically solve the problem simply by doing or not doing whatever one of those things is needed to make the seizures stop. We all want a magic wand that we can use to fix our children when things like this happen. I think mine is out of batteries right now; I keep waving it and nothing changes: Cinderella stays a chambermaid, the pumpkin stays a pumpkin. My son's seizures don't magically disappear, and we're running out of medication options that don't involve dangerous side effects.
I suppose that's the nature of life. Life is a heartbreaking, wonderful, sad, terribly beautiful thing, and we don't get to wrap everything up in a nice fairytale happy ending, no matter what the Lifetime Movie channel might tell us. We don't choose the paths our children walk any more than we choose our own. No matter how much I'd like it to be true, I can't change the fact that Connor has a difficult and bumpy road to travel. I can do my best to smooth his way, and make his journey as happy and fulfilling as possible. But I don't get to control where his journey ends, or how it ends. That's not my decision to make. That's a hard truth to come to terms with, but it's an important one. I can't control how much time I have with him, or for that matter, anyone else, but I can choose how I use that time. And weighing myself down with guilt instead of focusing on what things I can do for my son is not the way I want to spend it.
So I'll go in to Connor's room tonight, and kiss his small cheek, and stand over his bed for awhile, watching him breathe. I'll pray that I'll get the chance to stand over his bed many more nights, doing the same thing. I don't know how much time I have with him, but then I don't know how much time any of us has. I just know I want to spend every moment I can filling him to the brim with love. And with every smile, he reminds me why I started this whole crazy journey of parenthood in the first place.
I love you, little guy. Every step of the way.
5 weeks ago