Adventures with Ellie: This Face

When I was pregnant with Ellie, I was so concerned that she wouldn’t look like the rest of our family. When she was little(r), I was always a bit anxious in public because I was worried that people would see a diagnosis immediately and miss this beautiful baby. Soon enough, that fear morphed to them seeing medical equipment instead of a child at all. But there’s something about this that changed over time. I used to ache for her to be viewed as typical… I was so afraid of someone labeling Ellie before they knew anything about her. This is different now, but I’m not sure what changed, how, or when.

I’ve heard so much chatter in the Down syndrome community in the last few months on this very topic, and I’ve been reflecting on it lately. Today, I thank God for a diagnosis that she wears on her face. How odd is that? The label that I didn’t want to be so visible to the world three years ago is worn as a badge of honor today. I’m thankful for this face that looks different than other faces, but so much like my own, at the same time. I’m thankful for this face because it’s a face that draws other in, it’s a face that symbolizes a community of support that I never knew before. It’s a face that others recognize, but not for the pity or sadness that I used to envision. Yes, there are people who look at Ellie and look away, not knowing what to say. I’ve come to terms with those looks. But there are others who see her that relate so well. Others that see her and are visibly filled with joy.

For example, we went to the Troy Farmer’s Market this morning to pick up raffle items for our walk next week. As I stood there chatting with my friend, I saw an adult with Down syndrome walking down the street, very confidently, interacting with the different vendors as she went. As we left the stand and continued down the strip of vendors, we came upon a booth selling beautiful handmade soaps, where I saw that sweet face again. Another woman at this booth made her way around that table and said, “I just have to meet you”. I shook her hand and she explained, “This is my daughter, Ellie, and she just came up and said, ‘Mom, there’s a little girl with Down syndrome over there and I think her name is Ellie, too’”. What?? I then extended my hand to this twenty-five year old Ellie and spoke a bit with her. She was sweet and kind, her momma just the same. She had heard my boys saying Ellie's name and had to share with her mom. The mom asked a few questions and then said, “Wait… this is a trach, right?" (pause) "Do you know the Adams?”

“Kenny and Connie, yes I know them.”

“Oh… this is the Ellie I’ve been praying for. I’m so happy to finally meet you.”

Wow! This is the beauty of community. This is the beauty of small town living and also the beauty of a diagnosis worn on a face. We would have never met had her Ellie not spotted mine. Knowing the struggles that she’d gone through, this momma has been praying for our Ellie for all of her three years of life… and I never knew. As crazy as it sounds, this is not the first time we’ve had an encounter like this. We’ve had several. Thanks to this blog and its faithful readers, our story has been shared with others who have no idea who we are. We met a family while we were out to eat once and they kindly asked questions about all three of our kids. As soon as we introduced Ellie, they said, “Wait, is this the little girl from Adventures with Ellie?” I have no idea what my face said in that moment, but I was pleasantly surprised that they, too, were reading about our journey and again, praying for our family.

Since we were in Cincinnati, I started to reach out to other parents when I’d see a child with Down syndrome. I’m sure this was incredibly awkward for them because I know I stumbled over my words at the time. They were gracious, nonetheless. I saw a sweet little boy in a stroller in the kitchen once and sought out his mom. I said, “Is this your son? Does he have Down syndrome?” Her face was a little skeptical until I said, “My daughter… she has Down syndrome, too”. Instant relief on both our parts. I did this again a month or so later when I met a handsome young boy and his momma on the playground at the Ronald McDonald House… and again when we were waiting for a table at Red Robin with our boys. I always have to throw in the caveat, “my daughter does, too”… but I’m getting better at this greeting. As much as I didn’t want people to assume anything about Ellie from her face, I get super excited when I meet another person with Down syndrome today. At some point, I embraced this face of hers and knew that it meant I had instant access to this new world. A doorway that opened up to a secret garden of incredible souls who have the same trials, hardships, joy, and beauty that I see every day.

All of that being said, I want to take some time to thank each and every one of you for following along, for praying for us, and for sharing our story. I have so many other families from all over that I follow because someone shared their journey. We’re thankful for the community we have, but also for the vast virtual community we’ve established, too. And in case you don’t already, I give you full permission to use Ellie as your gateway to this community, too. You are granted permission (not that you ever needed it) to ask a stranger about Down syndrome and you’re allowed to use, “My granddaughter/friend/niece/cousin has Down syndrome, too… and she’s wonderful”. There’s so much beauty in this face… and I’m thankful for her face that is the same, yet so very different from mine. Have a wonderful weekend, y’all!

I have to run... Ellie just climbed into the dish washer. Such is life.