Who I am

Today is International World Down Syndrome Day. Yes, there is a day. Get it? March 21st, 3 copies of the 21st chromosome… clever, eh? The people at the International Down Syndrome Coalition have created a beautiful video, with the theme of “Who I Am”.

I’ve written about when we started to suspect LP had Down syndrome. One of the things I vividly remember that first night is looking through hundreds, maybe even thousands, of pictures online. The beginning was rough. I’d pick apart those pictures in my mind, rationalizing how LP looked different from those children. How he couldn’t possibly be the same as those other kids. I did this every night for quite some time. Each night I would toss and turn, then eventually end up on my phone, looking at pictures again.

Then something began to change. I stopped seeing my fears in those children’s’ faces. I stopped seeing all the negative stereotypes I had known, and I started to notice other things. Big smiles, funny Halloween costumes, laughing siblings. Faces smeared with birthday cake, little legs running in the grass. I saw babies, growing up into children, growing up into adults. Adults with lives as rich as anyone else. Adults with heartaches, love, achievements, and failures.

I think the sad fact of getting a Down syndrome diagnosis is that the community of people with Ds are largely hidden. With that, comes an inability to counter the negative misinformation that is out there about Down syndrome. I don’t know what LP will choose to do with his life. I do know that today, he will have some choices. Even so, I want him to have more choices. I want him to live in a world that doesn’t mistreat him, mock him, even end his life, for no reason other than that he has Down syndrome.

In order to have the choices that are owed my son as a human being, I think there needs to be a more visible, honest picture of what Ds is. We need to normalize disability, because it is normal. More than a fifth of Americans are disabled. Over half of Americans over 50 are disabled. Many people are walking around with Mosaic Down syndrome, and don’t even know it. We all carry genetic mutations that science has only begun to understand. We all live on a continuum of nature. There is no beginning and end to the lines that divide the “abled” from the “disabled”. We are all “abled” in different ways, and those abilities can change or be taken away at any time, by illness, accident, disease, or aging.

So who is LP? Who am I? We are all the same, and all different, I reckon. All cut from the same cloth, in different shapes. That should be nothing to fear. I think it is something to celebrate.

Check out the video. It is filled with awesomeness.

6 Comments on “Who I am”

  1. Lisa says:

    Four months out of the gate, and genuine advocacy and words of wisdom flow from you. You’re pretty amazing, Jisun. Your children are very fortunate.

  2. momshieb says:

    As a speech/language specialist for 20 plus years (yikes!), I have known dozens and dozens of funny, happy, interesting, full of life, engaging and energetic kids with DS. I wish you and your little guy many joys, many new milestones and a sense of peace. You have a hard road ahead of you, but if my experience is any guide, you’ll have a lot to celebrate along the way!

    • ji says:

      How funny that I should happen to stumble upon a speech therapist! I had no idea when I was reading your blog. Thank you for the kind words. :)

      • momshieb says:

        Truth to tell: i no longer do speech/language. I worked with EI, then preschool, then went up to public school for about 12 years. Now I am a fifth grade teacher, but I am still certified and have taught many kids with DS and other developmental disabilities. To me, these guys are the “keep me humble” crowd, because for every time I heard some professional say, ‘He can’t….” or “He won’t….” the kids went on to prove us wrong!

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