I met 19-year-old Lucy* about a month ago. Sunday she was standing next to her mother, holding on securely to her arm when I looked her in the eye, said hello, and told her how pretty she looked. She glanced off to the side and moaned something undecipherable, as her mother patted her hand and said, “Okay, Lucy.” The mother turned to me as if trying to explain, “Whatever she says, I just say ‘okay’!” Some might argue that Lucy’s not really saying anything, that she doesn’t understand me, and that there’s no point in trying to communicate with her. Perhaps they’re right.
But what if they’re not?
Lucy, you see, has Down’s Syndrome. I only know a few things about this birth defect. I know that some people with Down’s are highly communicative, some are aggressive, and others are very affectionate. I know that many are both. I know that Lucy is neither. And I know that had my niece been required to endure this life here on earth, she would be over 4 years old now and living, however so, with this same defect.
Soon after my sister delivered our darling Clara Grace, stillborn in 2006, I was unable to look at anyone with Down’s Syndrome without growing immediately emotional and introspective. I observed them in airports, grocery stores, and schools and asked myself all kinds of questions as I watched. Would Clara have done that? Would Clara have looked like that? Would she be that beautiful? That vocal? As demonstrative? Would she love me? And more importantly, would she know that I love her?
We didn’t get to find out, which is why I look Lucy in the eye. Whether she understands me or not, sometimes I feel like she is my chance.
My chance to hug.
My chance to love.
My chance to learn.
I say her name deliberately. Several hours after the funeral for my niece I watched my sister and brother-in-law open cards of condolences, and my sister commented on something I will never forget. “My favorites are the ones where people say her name,” she said, further explaining how valid and real it made her feel to have others acknowledge it.
I’ve only known Lucy for a month, and I don’t know if she understands me.
But what if she does?
I want her to know that I see her.
And that she’s beautiful.
*name changed
11 comments:
This is beautiful! So glad I came over. My sister is mentally disabled and so many people ignore her because they don't know what she'll say or how she'll react. These people need to be acknowledged just like everybody else!
So sorry you lost your beautiful niece.
That was so sweet. I feel like that around my grandmother with alzheimers. Maybe she understands me, maybe she doesn't, but one day she will know how I treated her. And right now my grandfather might know how I'm treating his sweetheart.
We have a Downs Syndrome boy in our cub scout den. He has a hard time communicating but darn if he doesn't do his best!
tears and smiles for your beautiful post and your beautiful niece and for Lucy
I work with people with disabilities, one specifically, a boy with downs syndrome. He is non-verbal but without a doubt I know he wants to be talked to and treated exactly as everyone else. His behaviors prove that. Far too often these wonderful people are overlooked. It's a shame because I learn something new everyday from these incredible people with incredible spirits. I could not ask for a more rewarding job or a greater feeling of purpose. Thank you for sharing this, it really touched me. I would bet that Lucy understands you...if not the words you are saying she understands the love and respect you are showing her by speaking to her directly.
It couldn't have been put more perfectly. Thanks.
This is awesome, Miss Vern. Love it.
I love this post. Great minds think alike. You are the greatest aunt and I think the world of you. love ya!
I used to be a Special Ed teacher. I worked with Downs Syndrome kids for years. Just like all kids, some listen when you talk and some don't but believe me, DS kids, just like all kids love to be acknowledged, looked in the eye and talked to. She hears you even if she may not understand you on the same level you are speaking to her. Talk to her, touch her, get down on her level when you do. The most important thing is she will FEEL the love, I promise. Sorry to hear about your sister in law's still birth. A loss almost too hard to bare but, I'm sure she knows that the loss of Clara Grace, is the world's loss but, Heaven's gain. Blessings, Tia
I love your funny posts, but I love these posts most of all. Gives me a reason to let out a held in, good ol' cry and to see this part of you shared with others that I already know.
You're a sweet, good hearted woman.
I am mom to an amazing, funny, witty, naughty, mischievous, stubborn, loving almost seven year old son with Down syndrome. Thank you for your post. There are two things I dislike the most. 1. When Tyler says hello to someone and they ignore him. 2. When people talk to my other children and they don't acknowledge him. I promise you that he does know and he does get his feelings hurt. I LOVE when people take the time to say hi to him, give him a high-five, ask his name, or simply give him a smile.
I'm very sorry for the loss of your niece.
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