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.