The scenic route

When Ella was born many people that I encountered that had heard of her birth would either a.) start crying in front of me as if I had given birth the the most devastating scenario possible or b.) tell me of a person they knew or had known with Down Syndrome as if their unresolved conclusions about DS would help me in some way. I actually preferred that to the former but it was always a little awkward and really, when you think about it, not really for me. Because what would it matter to me what they thought of this individual with DS? “Oh, I worked with a girl whose brother had Down Syndrome…he was kind.” “Did you know Harold? He was just the nicest person.” And on and on it went.
I think it is safe to say that most people have a certain unrest when it comes to how to interact with a individual with Down Syndrome. I even find myself uncomfortable at times (not with Ella so much but older individuals). But the feeling is quite unique to DS because everyone knows that more often than not people with DS, though different, are kind. Think about it…its a little odd. Why do we do this? We do we put assumptions on something we know nothing about? I came across this blog today…He starts out:

I’m sitting at Starbucks (that’s a worldwide chain of coffee shops), checking email, making phone calls, “sipping my triple tall non-fat latte,” and thinking about the fact that people with Down Syndrome make me uncomfortable.

My fear is that if I make eye-contact with a Down Syndrome person they will talk to me, I won’t understand them, and then I’ll feel embarrassed. (Yes Virginia, this phobia is “all about me”).

He paints a very real picture of how I think most of us feel. But what will make us change? Will we all have to have an experience like this to know that people with DS are people just like you and I. They have feelings, they have thoughts, opinions and insights.

It’s even a little awkward writing this and transitioning out because quite frankly, I don’t even know the answer or know how my view of individuals with DS will change as Ella gets older. Because to me, Ella is my baby girl…but maybe that it just it. She is my baby girl and soon she will be my big girl and then my teenager (heaven help me) and then an adult who doesn’t need her mom to coddle her all the time. And it will happen. Progress definitely comes slower: I am seeing this more and more, but it does come and sometimes looks different than how we think it should look.

I can’t help compare Ella with Jakob and this is when I see the biggest differences. Ella was born when Jakob was 22 months old. He could say full sentences, walk, run, climb. I found this facebook video of him sometime in the Spring before Ella was born.

Ella is 20 months and says few recognizable words but signs when she needs to communicate her desires instead of crying or screaming. I think we are close to walking, but she is still timid and unstable and otherwise completely unlike her brother in so many ways. And yet has so much courage and motivation to try new things, which Jakob never really had. If Jakob thinks something seems difficult, he won’t attempt it and will refuse to try. Ella isn’t like that. She wants to be able to feed herself. She wants to be able to walk on her own. She tries to use her signs.

Related or unrelated, I was thinking about this today, and last night as I stole her out of the warmth of her bed for a quick cuddle. Her body curled up into my stomach. She is getting so big (22 lbs to be exact: about the 20th percentile for typical children-way to go Ella!) She’s not so little anymore. I almost didn’t notice the time passing by during these past 20 months. You see, instead of the fast lane that Jakob and I are accustomed t,o Ella prefers the scenic route: it may take a little longer to get where you are going but it is worth the drive.

This is all a little disjointed – I apologize, but it is all part of this life we find ourselves in. I don’t know what it all means, or the truth you will take out of it, but I hope here, from my little corner of cyberspace, I can change the world for my little Ella one post at a time.