“We’ve got one of them at home,” a man I had never met told me while Ellie and I were waiting for a haircut one sunny afternoon.
That, or a slight variation of that, is something I have heard many times. It is the honest truth when I say I can’t take Ellie anywhere without someone telling me about their “special friend” just “like her” or the “blessing” they have in their lives – all code for person with Down syndrome.
I know the look – the squinty-eyed, sympathetic smile mixed with wonder and all-knowing – and can spot it coming from a mile away. It is interesting to me how few actual people with Down syndrome I see when I am out and about, all while so many people seem to have someone in their lives who is “one of the lucky few.”
It’s like Ellie has the same star power that people who knew celebrities before they were famous so often say was obvious from an early age. Just her presence in the room has some sort of magnetic draw. Whatever it is that gives people a reason to look, she has it.
Maybe it is the fashion choices she makes; her clothes express her seize-the-day outlook that makes her unstoppable. Or maybe it is the cutest little glasses she gets to wear over her almond shaped eyes paired with the way she smiles through her whole body when she bounces across the floor.
Like a bull in a China cabinet, every unsteady, graceless step is punctuated with excitement and curiosity. She bounds her way –similar to a Labrador puppy who hasn’t grown into his paws – towards whatever catches her attention to spread joy and offer assistance, even when it is unsolicited.
Her voice, though her words may be hard to understand, carries a cadence of enthusiasm and is loud enough that it usually precedes her, even when she is whispering.
Hugs are free all day. In her mind, everyone is deserving of one. The cashier at a store, her doctor, the mailman, any child who is shorter than she is, the waitress who brings her chicken and French fries, a stranger holding the door for her to walk through – no one is safe from her form of currency, and she has perfected the sneak-attack.
Before Ellie was born, I just wanted to change her. No matter how ridiculous or irrational, I was willing to do whatever it took to lessen the Down syndrome. (I would be so embarrassed for anyone to read my Google search history from 2018.)
I didn’t think she would ever fit into this world with a disability. But over the past four years, I have learned she was not the problem that needed to change. I needed to change, and anyone who might look at her funny or not let her sit at their table, needs to change. She fits, those who are uncomfortable with different don’t.
I started writing about Ellie and sharing the impact she has had on our family in order to try to bring others in on the secret. I want everyone in the world to have a “one of them” to think of when they see someone with Down syndrome waiting for a haircut.
I don’t necessarily advocate for anyone to actually say, “We’ve got one of them at home,” but I do like the familiarity and ease that comes from knowing someone who may create some feelings of apprehension. I like knowing that man would be comfortable sitting next to Ellie in a waiting room and including her in a conversation or even just giving her a polite “hi” rather than pretending she is invisible or worse.
I give an honest, raw account of what my life is like with her in it so that others can see that it can be hard and exhausting and frustrating and heartbreaking, but, even still, it is worth it. And she is worthy – of a seat at the table, a job interview, a conversation, understanding and a chance – because of the enormous value she, and any exceptional person, brings to all of us.
I haven’t always felt this way, and I remember even tearfully and shamefully admitting to my husband that I didn’t know if I would ever feel like I was glad to have one of “them” at home. Four years later, her determination has worn me down and I can see it her way.
October is Down Syndrome Awareness month. I hope everyone, at some point this month, gets a chance for one of “them” hugs.
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