Wednesday, May 25, 2011

We're still here!

So ... it's been more than a year. It feels like a lifetime. Callum is growing up so fast, it's hard to keep track of the changes. I suppose that's a poor excuse for being so behind on the blog, I don't know ... but here we are. Callum turned 5 in January. Anyone who knows anything about SMA Type 1 understands how meaningful that is. And he's generally been pretty healthy too - at least we haven't had any repeat PICU visits or hospital stays since the nightmare of October '08. There are still a million things to worry about, and an ever-growing list of problems to solve. But Cal is turning into such a great person, and his energy shines out more than ever, despite the physical challenges which, of course, aren't getting any easier.
This morning Janet and I went with our fantastic lawyer, Sharon Krevor-Weissbaum, to an IEP meeting with Baltimore County Public Schools. We've done what seems like a billion of these before, getting together periodically with people from the County to determine the level of services they are willing/able to provide for him, and the experience has run the gamut, feeling like trench warfare in the early days when we were the only ones who could speak for Cal's interests, to feeling more and more like the people that work with Callum, as they got to know him, have grown to genuinely care about him. Today was incredible, because this was the meeting to discuss his entrance into kindergarten in the Fall. Janet and I both got choked up more than once to be in a room with 20 people who we finally trust really are committed to doing right by him. And because this transition means that as the school year starts we'll be saying goodbye to the home-visiting crew we have come to know well - some people who have been genuinely great therapists, supporters, and friends to him. But they will do what they can to ease the transition, and it was so encouraging to meet with a new group of teachers, administrators, and medical staff who seem to really want to make school work out for him.
And, of course, we got choked up because our little boy is growing up.