To the Lady Who Told Me That My Daughter Is Beautiful
From the moment my daughter was born, she has been described as “dysmorphic” by medical professionals. I like to think of myself as an educated individual and I knew what it meant, but I still had to Google it… it’s what I do.
Dysmorphic: from the Greek origin meaning badness of form; abnormal.
Badness of form?! I heard this word over and over during her first 10 days of life spent in the cardiac ICU, from the geneticist, cardiologist, nurses, and so on. It’s a term I’ve come to despise. It took a toll on me. I went from seeing a perfect being to seeing this dysmorphic child they described.
Then, to see it in writing upon discharge was truly like rubbing salt in the wound. The list was endless… microcephaly, low set ears, small down-slanting eyes, wide nasal bridge, prominent epicanthal folds, small, slightly recessed chin. And that was just her face!
I began picking other people apart. It was my way of reassuring myself that no one is perfect. Aren’t we all just a little dysmorphic? I think it’s safe to say Jay Leno has a dysmorphic chin (sorry to single you out, Jay). However, his chin is PART of what makes Jay, well, Jay.
I built myself back up, only to have her ripped to shreds by a doctor at our children’s hospital. Unfortunately, bedside manner isn’t a requirement to be a neurosurgeon. He held her as if she were an alien, dangling her from her armpits and then he began to slowly pick her apart. We (I) left in tears and needless to say, we never went back. Once again I built myself back up; I did it for my daughter and my own mental well-being.
My skin has grown thicker and I know people will stare. Depending upon my mood, sometimes I angrily stare back; sometimes I smile as if to say, “It’s okay to ask questions”; sometimes (most times) I let it roll right off my shoulders.
Just recently we attended an event celebrating a support group for families whose children have a chronic diagnosis/diagnoses. A wonderful photographer donated his time and expertise to this event. He had someone with him; I assumed it was his wife, but for all I know it was his sister. This lady gently made her way over to our table and said to me, “I cannot take my eyes off of her. I could watch her all night. She’s absolutely beautiful.”
I wanted to jump out of my seat, hug her and exclaim, “You see it, too?” Instead, I modestly said, “Thank you.” This is not to say no one has ever told me this before, but the sincerity of this stranger (who I will likely never see again) was almost unreal. It was the kind of sincerity that makes your eyes well up with tears.
As a parent of a special needs child, I know when someone is being genuine and I can sense when someone is just trying to be polite. So, to the lady who told me that my daughter is beautiful, thank you and I couldn’t agree more.
The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.