Wednesday, January 30, 2008

On human connections

When I was 7 months pregnant with Caden, I attended a baby shower for a friend. I already knew Caden's diagnosis and was not bothered that other guests at the shower knew too, or that some of them approached me with questions. I actually welcomed the openness. I was genuinely happy for my friend who was expecting a healthy boy and hoped others would be just as genuinely happy for me. The last thing I wanted was pity. Or whispers. Or stares. So I was relieved to be experiencing none of those. But towards the end, one of the guests pulled me aside and said she wanted to speak to me alone. She led me into an empty adjoining room and we sat together on the sofa. She told me that she was a school nurse and had experience with a couple of students with disabilities. Her advice was to have one special thing with my son like she did with each of these students. One thing we shared that was ours alone. I thanked her for her concern and got back to the shower. I can look back now and realize just how absurd that whole conversation was. She had phrased it like it would be an effort but I should really try to have that one special thing. With my own son. Because she was a nurse that briefly saw a couple kids during her job. I don't suppose she ran back out to the shower and gave the other expectant mother with the healthy baby the same advice: hey, make sure you have one special thing with your child. I do know she meant well but it's still such a ridiculous gesture. As if that's all that might be possible between us. Oh, and way to get a woman excited about her pregnancy.

I did get this type of reaction often during my pregnancy and still do. People that need to tell me about their connection with Down syndrome, no matter how remote. "They thought I might have a baby with Down syndrome till we tested and everything was fine." "My neighbor's boss's daughter has Down syndrome too - they say she's really cute." "I watched Corky in Life Goes On back in the 80's." Yeah, thanks for sharing but you're not even close. I appreciate the sincerity but it just gets old. Really, don't get me wrong. I am truly glad when others reach out but you have no idea how much I hear this type of thing. I'm more glad for the people that are open to new thinking about people with disabilities, that are willing to shed the old stereotypes and learn what individuals with special needs are capable of, that aren't afraid to expose their inexperience by asking questions. Because let me tell you, life with Caden is not what I thought it would be, based on my limited prior exposure to Down syndrome. Unless you are actually living it, you can't know. To quote MTV, you think you know, but you have no idea.

On Monday, Caden had no preschool, no therapy visits, no doctor appointments. It was just Mommy and Caden's Day of Fun. It was awesome! We played hardcore, laughed ourselves silly, went to Caden's favorite haunts (the library, the pharmacy - I'll have to explain the draw of the pharmacy in another post), we invented games on the spot which is one of his toddler specialties. I really can't describe how special days like that are to me when we can just hang out and enjoy each other. Like any parent would want. Our relationship is just as rich and deep and meaningful as any other mother-son relationship. I love the way he strokes my hair, the way he hugs me tight when somebody cries on tv, the way he needs me to kiss even the smallest of booboos away, the way his eyes disappear when I make him laugh real hard, the way he holds my hands so we do the motions of Wheels on the Bus together, the way he blows me kisses as he lays down for naptime. And we do have those special things, our secret things, that only he and I share. But let me tell you, there's a lot more than one.

3 comments:

Tara Marie said...

Oh how I love this post.....and I know that special list is very long...and delightful!

Keri said...

What a beautiful post. I'm not even sure I ended up here but I wanted to comment.
You're both very lucky to have each other.

rylie's mom said...

Yes, I can so relate! I have a 5 year old daughter w/Ds! I love when people ask me questions! It drives me crazy when someone who really has no clue tries to give me advice about Ds or thinks just because they know someone who knows someone w/ Ds they are an expert! LOL! Great post!