Do They Know?

Have you ever been in one of those awkward conversations with a perfect stranger where you feel like, “sheesh lady, I just met you and now you’re telling me your life story..” You feel like there’s no way out of the conversation, but you simultaneously feel a sense of pity, because why would anyone feel the need to spill her guts out to someone she just met? Lately, I am totally that lady.

I’m coming to learn that while there are many hidden blessings of having Regan, there are also situations for which I’m completely unprepared. I’m talking about situations that parents of typical children will likely never face. As I come out of the newborn fog and become more of a normal person social again, I’m finding that there inevitably comes a time when Regan’s diagnosis must become part of my introductory conversation. It’s not something that worries me nor gives me anxiety, but it’s sort of a necessary awkward bump in the road in the middle of a conversation.

When I look at Regan, I see her beautiful blue eyes, her sweet dimples and infectious smile. I don’t know what other people see when they see her. Do they immediately know she has Down syndrome? Are the suspicious and afraid to broach the subject? I’m happy that I don’t know others’ inner thoughts because I’m afraid they might be hurtful. Lucky for me and for everyone who gets to meet Regan (and I do mean “gets” because it is an absolute privilege!), she is a sweet, cuddly, smiley baby and it takes her exactly 0.1 seconds to make you fall in love with her.

But still, the topic looms like a lone raincloud on a sunny day. It’s not scary for me anymore, but I know how scary it is for other people. I totally get it because I was the same way before I had Regan. It was a world I didn’t understand and quite frankly intimidated me. I have found that there are usually natural breaks in the conversations where I am able to share our story and Regan’s diagnosis. It’s not something I can throw at people right away. I was talking to my mom about this topic just this week and we compared it to a mom saying “This is my baby – she has diaper rash!” *cue the awkward cricket chirps*. It’s funny—after sharing her diagnosis, I always expect people to say “REALLY?? I had NO idea she had Down syndrome!” I don’t know why I expect this response, maybe because I see Regan for her flowering personality and sweet nature (and not her diagnosis). I’ve never received that response. Most people nod understandingly as I spill my guts and share our journey to date. I have yet to be able to share her story without crying, and suddenly I become THAT lady who doesn’t know how to stop talking.

I think most of the time, people mistake my crying for sadness. I quickly explain (more talking from the lady who overshares) that I don’t cry for grief, though there were days of those tears, too. I cry because I can’t contain the joy I have and I’m acutely aware that without the marvels of modern medicine, we would not have her with us. The only sadness my tears carry is for the possibility of missing out on this fabulous life with her.

Fairly quickly after finding out I was at high chance of having a baby with Down syndrome, I knew I had to get comfortable talking about it. I forced myself down (what was then) an uncomfortable path because I had to blaze a trail for Regan in this world. Now that Regan is blazing a trail of her own, my calling is to share the joy of Down syndrome with the world.