What a Difference Five Years Makes

Five years ago this summer, I sat in a hospital bed, longing to hold my hours old baby who had just been shipped off to the NICU with “complications.” The floor had just give out on me with the shocking diagnosis that our first baby, little Leo, had Down syndrome. I was awash with emotions—overwhelming sadness, grief, anger, but mostly shock. How could this have happened?

My sweetly optimistic and always hopeful partner (and Leo’s other mom) arrived at the hospital the morning after his birth armed with a stack of print-outs. She’d stayed up all night researching Down syndrome on the computer and one of the things she found was that every year there is a fundraising walk in Central Park for Down syndrome. We could go! We could bring Leo! She beamed with excitement.

I shrugged. Why would I want to go to that? Why would I want to be around those people?

Oh yes, because we now had a baby with Down syndrome.

We went. I tried (and did not really succeed) to put on a happy face. Leo was about eight weeks old. I remember feeling like I was going to burst into tears the entire time I was there. Every where I looked I seemed to see (what appeared to me to be) low functioning, uncomfortably loud or socially inappropriate people with Down syndrome. Sure there were some babies there, and young people, and they seemed innocuous enough, but I felt completely out of place, like I had no business being there and I had nothing in common with those people. Pictures from that day show me holding a screaming Leo. I look exhausted (yes, sleep-deprived, like any new mother) but also I have the tiny, wrinkled eyes of someone who cries. A lot.

It was true. I had no business being there. I was not ready. But I had plenty in common with those people. I just didn’t know it.

Five years later was this Saturday. Leo is (as we all know by now with the way I carry on here) a buoyant, endlessly energetic, gregarious, friendly (sometimes to a fault-can you be friendly to a fault?) little boy.

There's Leo at the Buddy Walk, going in for his famous dance move, we call "the Donkey Kick." Don't ask.

We’ve gone to other Buddy Walks since that first one, but this year felt just, different. I didn’t feel an ounce of sadness, truly. There was no grief. There was just acceptance (yup, this is our life) and community. It was New York City and complete strangers were smiling at each other and saying hello.

There were people with Down syndrome of all ages and abilities, some were adorable, sporting pigtails and sundresses, others were older, some in wheelchairs, and no, not so easy to look at.

There was cotton candy and snow cones and bad music and parachutes. Tomorrow we can all go back to fighting our small wars, keeping the “R” word out of conversations at the office or in the playgrounds, trying to get Leo to stop throwing his shoes into the back of the minivan or bolting into the street or worrying if he’ll ever be completely included by his typical peers in a general ed classroom. But Saturday at the Buddy Walk, it was just a day to enjoy.

All of this to say, it’s not that I certainly don’t still have my bad days, my sad moments. In many ways, yeah, Down syndrome is a real drag. It will always depress me to know that life will, generally, be harder for Leo than it is for most people, that he and Erin and I will have to fight for things most mothers and children just take for granted. But Down syndrome, while having the possibility of being a real drag, well it isn’t always.

And anyway, Saturday, in Central Park, there was no need for melancholy.

It was just a good day.

More good things:

Leo got his face painted for the first time. This is huge! He's never sat still for something like this. Might that mean a real haircut may be in his future?

My guess is he did it because Little Miss did it first (cause anything she can do he can do better).

Here are Erin and Leo hobknobbing with the glitterati.

That's John C. McGinley from "Scrubs"(for those who don't know he's a big advocate for ending the "R" Word and his son has Down syndrome).

That's Chris Burke from "Life Goes On."

Leo appears pretty unimpressed with both of them.

Well I was impressed, with every darn bit of the day.