Celebrity Status

At Kroger, when we go out to eat in a restaurant, in the waiting room at doctor appointments, while playing at the park, walking through parking lots, even at the Arby’s in Laurel, Mississippi, nearly everywhere we go, Ellie draws attention.

“I have a special friend like her.”

“She is just so cute. They are always so happy.”

“Look at that angel. You know, she is an angel sent especially for you.”

“My aunt had Down syndrome. She lived to be nearly 75.”

“My brother has Down syndrome. He is 19 and is the best thing that ever happened to me.”

It is as if she is a celebrity. She plays along, smiling and waving, blowing kisses and laughing excitedly at the strangers during the Ellie Parade.

I know it all comes from a good place, but it catches me off guard every single time. I don’t always see the Down syndrome when I look at her. I think I just forget about it. Ellie is just my Ellie.

Sure, there could still be some denial in there. It is hard on me to think too far in the future about what the Down syndrome diagnosis will mean for her, so I just ignore most of the fortune telling that people to give us about when she will potty train or learn about personal space. For better or worse, I get scared and really try to focus on where we are today instead of where we will be when she is five or 15 or 35.

One of the best parts about being a personal assistant to a superstar is getting to hear all of the positive stories and thoughts others have about people with Down syndrome. Thinking about how she will be perceived in public is one of the things that I have wrestled with and the support she gets from these people we don’t know is encouraging. At this age, it seems like she lights up any room that she enters.

Lately I have been thinking about this “reality” driven society we live in, which includes both people who are really just plastic, scripted and paid or those who are only running the highlight reels on their Facebook pages, and how easy it is to overlook the literal reality of the unpleasant parts of the human condition.

We are all connected to each other through good and bad experiences. Inevitable emotional and material encounters that shape who we are and how we see things as we navigate our time here are necessary to the experience of being a human – or the human condition.

I know that growing from the bad and the good will be part of Ellie’s journey. She is a human, so she, like the rest of us, will get to walk this same path. But, as her mother, I can’t help but wonder how the current unattainable goals that society has set will affect her.

Maybe it is just the cookies from websites I visit and targeting, but what I see online makes me think that little kids with Down syndrome are more popular these days. I don’t remember seeing so many kids like Ellie advertising baby food or toys before. Will this mainstreaming and normalizing continue? As she grows, will she always be able to see herself out in the world or are teenagers with Down syndrome not as marketable?

With any of the forward progress that shows like “Born This Way” on A&E have given people with disabilities, there is still very real bias in society. Regardless of your political leanings, I don’t think there is any denying that there was, and still is, a lot of rhetoric around the real or interpreted mocking of a disabled reporter by President Trump on the campaign trail before he was elected.

While she may have a seat nearer the table, less than is still part of the greater conversation and she will be able to overhear those words. This is just part of the conflict that she will experience as she understands her serving of the human condition. And helping her navigate this is part of mine. Reading along as I put my fears on paper and what you do with these words is part of yours.

4 Comments Add yours

  1. Doyle Lee Lee says:

    Thank you so very much for including me on the list of people who receive this email. Your writing is thought-provoking and always leaves me thinking what a truly creative writer you are


  2. Amber says:

    I can relate – when we go out in public I’m used to people calling out AJs trach and medical equipment and asking questions. When someone mentions his Down syndrome I sometimes have to stop and think about it. I spend most of my days NOT thinking about his Down syndrome. I don’t know if it’s denial so much as I don’t want that to be what defines him. But it’s probably a little bit of both.


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