One Leg At A Time

With a few days of calm under our belts I've had a chance to reflect on the last couple of months. Time sure flies, doesn't it? Back in early July we didn't even know Jordan was having seizures, so learning about them, and how urgently we needed to stop them took us by complete surprise. I have to admit that they didn't seem that bad to me, and that I didn't understand the seriousness of them for some time (mostly because Jordan's first neuro was useless at communicating anything meaningful to us).

But the infantile spasm phase of our lives has passed (for now, knock on wood they don't return), and it's time to step back again and look at the whole picture. It's a little more comforting now that she's not screaming her brains out 22 hours a day. That was torture, and it was hard to see past the next hour most of the time. But now it's time to remember that we have a very sick little girl, who's over 8 months old, but is still acting like a ~2 month old. We're thrilled to see the smiles, the movement, the eyes "looking" around, the sleeping through the nights, all of those things that you're thrilled about when your new baby does them. She was even sucking on her own hand today while up on my shoulder, and it was amazing to me. But it's also sad, because at this age she should be sitting up, holding her head up, rolling over, beginning to crawl, tracking things with her eyes, interacting with toys and people, smiling back when someone smiles at her. But she doesn't. We forgot about all of those things while she was screaming -- we could hardly think of where the fridge was in those days, let alone her developmental level. But now that she's calm again, the reality of our overall life is snapping back in our face. Babies all around us are sitting, smiling, interacting, and it breaks my heart. I certainly don't want anything bad for those families, it's nothing like that, but I certainly do want that for ours. And it's pretty doubtful we'll have it. It's definitely sadness, perhaps a little bit of jealousy & envy. I don't feel like I have anything to share with these parents, so I don't say anything. Well meaning strangers say things like "oh, look at those fat rolls, what a healthy baby," and I cringe and bite my lip. Or "look how sleepy she is," not knowing that she's wide awake and that is just part of her look (her condition).

So, now that the spasms are under control (for now, knock on wood), I'm gathering medical records, ordering faxes, and booking flights to take her to specialists all over the US, and I'm back in the business of figuring out what's "wrong" with her. Many other parents of special needs kids tell me that I should just give up and love her. But certainly they must know that I DO love her. We love her more than anything (okay, tied with Avery) and that's part of the reason we're doing this. Perhaps if we know what went "wrong," we'll know how to treat it or deal with it. And if there's no treatment today, perhaps there'll be one next month, or next year. We just need to know what to look for. Many of these ultra-rare diseases are being discovered and "fixed" daily. But I know what those other parents are saying, too, and I know that a day will come when the diagnosis won't matter anymore. We'll just get up and put our pants on one leg at a time, just like everyone else -- only the pants will look entirely different.

Hundreds of times a day I look into her great big blue eyes, and see those long batting eyelashes, and gently rub those rolly polly cheeks (that sometimes spread into a grin), and I don't want any other baby in the world. Just Jordan.