Thursday, October 6, 2011

31 for 21: Mass post. One thing I love about Down syndrome.

First, I want to thank my readers who have made comments privately or publicly about our story. It has been cathartic to compose it in words. It means a lot that it has touched anyone's heart.

Second, I want to apologize for not having pictures included with this entry. I had them planned out, but then the evening just got away from me.

Third, I am taking a short break from the pregnancy story today, to post on a shared topic that many of those participating in 31 for 21 will post on today. This will occur every Thursday this month.

Today's post: One thing I love about Down syndrome

The truth is that I don’t love anything about DS, except for my child, and the other people in this world who have been inextricably linked to it by their extra chromosome. Maybe someday I will be happy that Sam has DS, but I’m not there yet.

I could say I love his eyes, with their little tiny epicanthal folds. I could say I love his feet, with the sandal gap (even though my hubby wouldn’t let me buy him shib-shib—Arabic for flip-flops--to go in the gaps). I could say I love how sweet and loving and happy he is, how he is so enamored with people and their faces. I could say it was amazing having a baby who would sleep through the night since day one. But I will not say that I love anything about Down syndrome.

Those things are not Down syndrome…they are SAM. Every last one. He comes by them honestly, too…regardless of his chromosome count. Do I love his almond-shaped eyes? They remind me of my own, but with longer eye lashes.

Do I love his sandal gap toes? The gaps that aren’t quite as big as his Daddy’s?

Or his pectus excavatum—the sunken-in chest that he also shares with Daddy (but that Daddy wouldn't let me take a picture of)?

Do I love his sunny disposition, how he rarely cries or fusses? He really is such a happy baby…

Except when he’s not.

Do I love having a baby who sleeps through the night? He gained weight just fine those first five months since we set an alarm to wake him for a 3 am bottle.

Do I love how he engages so readily with people? How he is so loving and “social?”

Of course I do! I love all these things. How could I not love them? They make Sam himself. But, he could have all these traits without having Down syndrome, and I resent the implication that he would be anyone other than himself with only 46 chromosomes.

More than that, I resent the idea that Sam is his Down syndrome, or will ever be defined by it in any way. I patently despise the idea that he is, or will ever be, one-dimensional.

“He’s always so happy” is a dagger to my heart. He loves to flash his “light up the room” smile, but it minimizes Sam’s humanity to think that he never has or will have another emotion.

I love that Sam is so social, highly motivated by faces and the reactions he receives from others. But it would be a lie of omission not to also address my fears about his being used and abused, taken advantage of, or patronized because of his desire to please and gain approval. I want people to know and love Sam for Sam.

The idea that someone might dislike, mock, or devalue Sam because he has Down syndrome is a punch in the gut to me. But at the same time, the idea that someone might be superficially nice to Sam because he has Down syndrome is like a slap in the face. I want people to see him for who he is, just like I do. Who he is, is Samuel Alexander. Down syndrome is only 1/47th of who he is…and he would still be Samuel Alexander without it. So I don’t have to love any part of Down syndrome. Loving the people who have it is enough.

1 comment:

  1. Such an honest post. I also have not come to loving Down Syndrome and I think if I could wish it away I would do just that. I completely understand your view point. p.s. you write very well, I'm excited you are blogging because I truly enjoy reading your posts.