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,