When Joe-Henry was first born, it was clear to the doctor's but not to us that there was something different about him. All we saw were these eyes, wide open, that took in the whole room and the measure of everyone he saw. But the nurse noticed it first: He had a large birthmark that ran the length of his left leg, and two of his tiny fingers on his right hand were, well, not tiny. Or at least not as tiny as the other three fingers on that hand. There were whispers amongst the staff, and eye contact, and after his bath, and some initial routine baby tests, they whisked him away to the NICU. After days of tests and more tests, days in which I could not feed him lest he have involvement in his intestines, it was concluded that he had something called Klippel-Trenaunay Syndrome. We could barely say it at the time, sleep addled and worried as we were, but in the years since, it has become another member of our family. It is something of an identity - not just for Joe-Henry, but for us, his parents, as well. It won't always be that way, there will come a time when he will make decisions about how to deal with it, if indeed he has to, on his own. But until then, it's mine, too.
We have been fortunate, so fortunate. His case is fairly mild, and his involvement does not cause him constant, debilitating pain. There have been a few bouts of cellulitis, which have been scary, and some odd hiccups here and there, but mostly it's just the syndrome's underlying there-ness that has caused my hair to turn white in places. It has just been this other creature sitting in the corner that looks me in the eye when he gets an odd symptom, as he did last night, when his left leg wouldn't bend.
I took him to his pediatrician today, who recommended ibuprofen for a few days, and if it gets no better, an mri. I've been in touch with the folks from the support group, sending emails, receiving knowledge and hope due to their familiarity with this terrain. I've requested a referral to Shriner's Hospital in Portland, because I've heard of an ortho specialist who has a lot of knowledge about kt, which is almost as rare as the syndrome itself.
I'm doing my best to take action, to stay positive, to not worry too much. I am staying within my worry speed limit, working hard not to get too far ahead, to not picture my boy being wheeled into surgery, or hobbling about as a grown man. But it's so hard. This is when motherhood is hardest for me - I can soothe away bad dreams, stomach aches, trouble in school, temper tantrums. But this - this is just me keeping the monster at bay so that he doesn't pick up on it. I busy myself with tasks, I keep my voice cheerful, but all I want to do is have someone, someone who knows for sure, tell me it will be alright. And I know that just isn't going to happen. Because no one really knows for sure, do they? That is the cold, hard fact of parenting: there is so much that is unknowable and out of our control.
That is the nasty bitch of motherhood, right there.
2 days ago