Down syndrome


My sweet daughter,

So many months ago, before we knew that you had Down syndrome when we were told that there was something wrong, something that could be “inconsistent with life”, I wish I could have had a window into this moment. You’ve fallen into complete exhaustion, right here on my shoulder and I just let you lie, as I often do. I nestle my nose down deep into the crevice of your neck and I inhale and my body unfurls from the top of my head, south, all the way to my toes. I find refuge from the exhaustion of being a new parent in the understanding that we are two parts to a very intricate puzzle.

Despite my best intentions, I have to admit to myself, and to you, that I have not loved the baby years but, dear god, I have loved you, my baby, more ferociously than I could have thought possible. I cannot believe our luck, your father’s and mine, that we get to be your anchors. That in a room full of a dozen people, you seek us out as your center, your home, your safe space. I meditate daily on how to be worthy of your jubilance; on how to meet your absolute love of life with my own; on how to put away my to do list and my exhaustion and be present with you as you meet the world as a new and fascinating adventure every, single day.

We get to define no less than a thousand things for you in the course of your lifetime and, I realize today, that not one of them is more important or urgent than love. We get to help you hone what it means to love and be loved; to navigate how you will treat others and how you will allow yourself to be treated. I know this is probably a temporary job but until then I will do my best to make my words to you a meditation of kindness. I pray they graze your head with gratitude, that they knit themselves into your heart, making you strong and compassionate. I hope they urge you upward and outward, that they encourage you to keep grabbing at life with your tiny fists. My daughter, my love, the brightest star our sky, happy, happy birthday.


Keep them first

    “Look at that cute downs baby”
            “I had a downs kid in my class in high school”
  “My friend has a downs child”

Nothing about the statements above seem particularly offensive to most people but if you really think about it, they all make the CONDITION primary and the PERSON secondary. People with disabilities are people first and they have many other features that make them who they are – brown hair, green eyes, a resemblance to their father, a wicked sense of humor, a great pitching arm. When we use language to put their condition first we discount all of those other things that make them unique. Even if their difference is their most obvious feature it doesn’t mean that’s all they want to be known for. My hair is almost always frizzy but I don’t really want to be known as “the frizzy-haired woman”. I would hope you would talk to me and find out I’m also the woman with a terrible sense of humor (based mostly on puns) or the one who always uses the wrong emoji when sending text messages.
            We would never in a million years say “that cancer kid” or “that diabetes guy”. We can identify that as inherently disrespectful and dehumanizing. It’s the same with any other condition. For example, Down syndrome is not the first thing you would ever see about my daughter, Julia Grace. Most people remark on her blue eyes or her ready smile or her silly noises. That’s what makes her Julia Grace, not her Down syndrome. So, the next time you want to refer to someone with a difference or disability make sure you ask yourself, am I putting the PERSON first? Or, better yet don’t even say “that baby with Down syndrome” at all. Instead say “that funny (silly, sweet, blue-eyed, cute…) baby, Julia Grace.”