Friday, October 28, 2011

Giving #47 the Side Eye

Dear Extra Chromo,

I go back and forth regarding how I feel about you. In some ways, I do believe that you help my daughter to be the very person I adore and if you were taken away, would she be that same person? If I had that choice to make, would I?

In the past, I’ve always said that I would, if I could. I don’t think that’s changed for me, really. The decision’s just more complicated by the good things that come along with this new community that I was ushered into over four years ago unaware. There are lots of wonderful things I like about that.

I love the people I’ve met, the places I’ve visited, the things I’ve learned.

I appreciate my increased level of patience and compassion. I look people that are different in the eye. I say “hello.” I understand their value in this world.

I enjoy celebrating the accomplishments of not only my child, but the children of others who also have similar unique needs because I now understand what level of determination, passion, and commitment it takes for them to reach that milestone.

And sometimes, just sometimes, I crave the fire that the fight for my daughter’s basic rights brings to my being. It makes me feel alive and purposeful.


Then I think about how you stripped away the joy that others speak of when they first held their child after it was born. That “love unlike any other” feeling? I didn’t have that. I was afraid. I was sad. I was completely and utterly devastated by the unknown. You did that.

I think about how people look at my daughter and feel pity before ever giving her the chance to show who she is and what amazing things she can do. They lump her into categories reserved for what they believe to true about all people with Down syndrome. No wait: “Downs kids.” You did that.

I worry and have sleepless nights, scared of what might happen if she stays so friendly and continues to never meet a stranger. People prey on such things. You did that.

I want her to succeed academically, but then think that, if she does, and she’s fully included that she’ll only be patronized and not truly be accepted as a peer. You did that.

I can’t stand in line at a restaurant on family night without someone feeling like they have the right to come up and tell me that my child, who they have never met, “…might read one day. Just not at the level of a normal child,” all the while making sure to remind me not to keep my expectations too high because some parents are uppity like that and think their kids are higher functioning than they really are.

The features that revealed my baby’s inner struggles and opened up the door to insensitivity and presumptuousness are thanks to you.

The fear, the guilt, the pain. Sure, maybe I would feel that in some instances had my child been born like the other 690.

All parents wonder. All parents feel like they can do more. At one point or another, we think we’ve failed and are grateful for second, third, fourth and many more chances.

But some days I just have to think that it’s more for me because of you.

That’s why I don’t like you.

That’s why I’d let you go if I could.

But I can’t. I know that. And I deal. And I’m probably a lot stronger for it than I realize.

I do the best I can and I don’t dwell on the “why?” anymore.

I’ve passed the phase of trying to answer the question of “How dare you make an appearance in my life after all of the things I’ve been through?!”

I understand that we are a part of the “why not?” club.

The only criteria for membership is you.

I’m sure we’ll struggle, you and I, over the years. Many days, I’ll accept you wholeheartedly, not caring at all that you exist.

And then one day, out of the blue, you’ll sneak up on me, tapping my shoulder with an aggressive reminder of all that is different, all that is more difficult, because you exist.

I hate to give you so much attention. Really, I do. It probably makes me look weak and puts you in the position of appearing more powerful in my life than you really are.

But I’m confrontational like that. If I didn’t tell you, you’d never know.

I love my kid.

I’ve got my eye on you,


Michelle said...

Love this.

I think you explained a lot of the back and forth that many of us feel.

There are so many days, or times, when I think 'if only she didn't have Ds..." (usually dealing with school issues!)

Me ;-) said...

Wow! I'm really feeling this post. Thanks :-)

Not a Perfect Mom said...

oh no she didn't?! Some person really said that to you? WTF?
Did you go apeshit? I would have

Becca said...

I'm with Not a Perfect Mom on this...seriously???

This was a great post, really made me think, try to remember just how I felt, just how I feel. I've wondered sometimes whether or not I'd take it away if I could. But who would she be then? I just can't imagine having the amazing child I have without it.

Alison said...

This was a really thoughtful post. The thing that struck me was that virtually all the things you didn't like were things not about your daughter or Down syndrome, but about society. People have terrible attitudes. They might not have high enough expectations. They might be guided by stereotypes when they see her. YOU were afraid of all the stereotypes when you met her. I find myself thinking that this isn't about Down syndrome, it's about our society's misguided assumptions about Down syndrome.

It's not her condition that's the problem as much as it's our society's interpretation of her condition that's the problem.

Alison said...

Okay, and one more thing I wanted to add: we can't change her chromosomal make-up, but we CAN change society!

Tiffany said...

I love this post. The thing is, we probably could take out the extra chromosome, or arrive at other equally effective therapies to open more doors for our kids. We put a man on the moon before I was even born. This biological frontier could totally be nailed as well. But funding and motivation need to be there for the research.

I agree with Alison, it comes down to the mindset of the society as a whole...but we are the only people who can spark the motivation. If we resign ourselves into completely giving up on these possibilities from the very start, the medical breakthroughs will never happen.

jonashpdx said...

I feel like I could've written this, but it wouldn't have been nearly as thoughtful or eloquent, so I'm so very glad that you did.

Lisa said...

Love this... and I was thinking exactly what Alison said :)

Thanks for sharing this. Really important post!