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.

11 comments:

Sal C said...

Thanks for posting this, J. My best friend's daughter was diagnosed with SMA when she was a little less than a year old and this August she turns 16 (College tours starting in the fall!). Just a remarkable kid in so many ways.
Sal/the gerunds

Bill said...

Brilliant! Love to you all.

Jacob said...

Thanks for the update, J...been checking in throughout the year, and was hoping that no news meant good news. I'm happy to know that's the case. Good luck with the transition to kindergarden (all three of you!)

pbeagan said...

Great to see a new post from you guys with good stuff - I've Googled you and Callum every few months the past year with a bit of trepidation because of the lack of updates, and I'm sure I'm not alone in being thrilled hearing things are going so well. He's beautiful.

As the accessibility "go-to" person in my office (got to survey bathrooms and stairwells for ADA compliance for 6 months and design a universally accessible entrance for a landmarked building at Ground Zero right out of school - a horrific/incredible experience), I think there fortunately is less resistance/greater cooperation regarding barrier free designs and building administrators. Education has supplanted litigation as the motivating factor, thanks primarily to folks like your family. The message is so different when given by Callum and not a code inspector.

Get the boxes ready for preserving the kindergarten projects and enjoy the summer.

Pat

Mr. Nez said...

I could swear somewhere on here that I read Cal was really into bug or insects... is that still true? I have a really cool pic i'd send of my son, Spencer, at a lady bug release I think he might be pretty amazed at...
Spencer is a touch older at 6 years old... Hope all is going well for him and you this summer.

Unknown said...

I'm still reading. A few months ago I stumbled on Gordon Withers' cover of "Iodine", and just tonight found his site, and his benefit album, which led me back here again. Hang in there. More people than you might think are paying attention and thinking about you guys. ;) Also, thanks for all the great music over the years.

Mike W said...

So I'm guessing school started in Baltimore recently, how was his first week?

kisa said...

Happy to see your smile, Callum! You are an inspiration!

R Wilson said...

We still read and keep you and your family in our thoughts, J. :)

- Rodney

stefco said...

Wonderful to read that Cal is doing well.(I just moved country & hadn't the chance to check in before now) I hope he is now fully ensconced & loving Kindergarten. Great pic' of him with his Kaoss Pad, a lil raver! Best wishes to you all & I hope you all have a fantastic Christmas.xxx

SBY said...

Callum is such an amazing child and you and Janet are incredible parents. I didn't realise you had a blog for Callum and I'll check back regularly. Your music has always inspired me and now, so does your family. Wish you all the best J.