This is What It’s Like to Live with Down Syndrome
Mingling with a group of new people the other night, I was asked several times: What do you do?
I stumbled over the answer. A few times, I actually didn’t know what to say. This is when I become torn on telling someone I’m meeting for the first time that my son has Down Syndrome. It’s a huge part of my life. And for much of the day, it defines what I do. I know this will change, but for the moment getting a little human to walk -connecting all those neurons - is no small task. Then there are times I think I should be more stoic and not mention it at all.
The thing that I like about mentioning that my son has Down Syndrome is that it explains a lot, and it cuts through a lot of the bullsh__. I relax, and I don’t have to talk so much about why I’m not getting so much done out there in the "real" world. People seem to have an immediate understanding of some of the challenges I may encounter in caring for a child with special needs.
So, I’m learning to trust some sort of equipment in my brain that intuitively knows when to reveal this THING about my life. I guess it’s usually if I feel the person and I have a chance at connecting at a level that does not include pity and instead empathy. Maybe I feel there’s a chance I will get to know this person more, and in that case, why beat around the bush?
One time later in the evening - and I thought this was hilarious- I got asked that question again: What do you do?
I’m a mother.
Pop went the balloon. Pause went the light and happy conversation. The look on his face said: And that’s it?
Most of the time, yeah, that’s it.
I then followed up with the fact that I was a writer. Ahhh…his head nodded and welcomed me back to the conversation.
I didn’t stay much longer; I had to get to bed. My day job gets me up early.


Alison on 13 Feb 2008 at 8:26 am #
I think when people ask us this we should answer with, “Well, I am a writer, a physical therapist, a cook, a maid, an event coordinator, a teacher, a driver, I do conflict resolution, a little bit of nursing, and in my spare time…” Somehow saying that we are mothers sounds like we have a lot of time on our hands.