“She’s so beautiful, she doesn’t even look like she has Down syndrome”. I hear this a lot. It’s meant as a compliment and I take it as such because she is beautiful. And she looks like she has Down syndrome. The two are not mutually exclusive.
I sometimes wonder why people like to tell me Scarlett doesn’t look like she has Down syndrome. It’s not true, I know enough children with Ds to be able to recognise the shared characteristics and we’ve seen enough Doctors who have known just by looking at her that she has Trisomy 21. I like way Scarlett looks and Down syndrome is part of that.
You see, if Scarlett didn’t have Down syndrome then she wouldn’t have those beautiful dark almond shaped eyes which seem to sparkle when she smiles. She has her Daddy’s eyes for sure, a quick look at Simons baby photos and you see it instantly. She has his nose too. And his hair. Or at least his hair before he lost it.
She has my Dads smile. A Jones smile. It’s warm and kind and pulls wide with thin lips. And because of her lower muscle tone, her little tongue pokes out, sometimes resting on her bottom lip when she’s tired. And when she’s feeling cheeky she tips her head to one side, smiles that beautiful smile with her tongue poking out and eyes sparkling and it just melts me.
She giggles when I kiss her neck. It’s a little shorter and wider than some other babies and it is as soft as velvet.
Scarlett always has her sleeves rolled up, her arms and legs that little bit shorter. It always makes me smile, she looks like she’s rolled them up to get down to some serious playing. I might have to learn to sew as she gets older, another skill to add to the many I have learnt through being Scarlett’s Mum.
The palms of her hands have the single crease, common in those with Down syndrome, and her fingers are a little shorter. She has beautiful hands, in those first few weeks I would marvel at how tiny and yet perfectly formed they are, tracing my finger across her single line.
Several years ago, a friend told me that he would be disappointed if people couldn’t tell he was gay. He felt it was an important part of who he is, a part of him he felt proud of, he didn’t want people to mistake him for a straight man because that isn’t who he is and why would he want to hide who he is? I think perhaps that’s how I feel about Scarlett. It’s not the 1960’s, homosexuality is no longer illegal and we do not hide people with Down syndrome away in institutions. We are out and we are proud. Disability is no longer something to feel uncomfortable about, we should talk about it, acknowledge it. It’s part of life. It is part of our life and it brings so many wonderful unexpected positive dimensions to our life, how could we possibly ever see it as a bad thing?
So you see, to me, Down syndrome is just one of the many things that make Scarlett who she is. I don’t see it as separate. She looks like Scarlett, like Simon, like me, like a little girl, like she has Down syndrome. They all sort of mix together to make Scarlett. Beautiful, perfect Scarlett.