The Down Syndrome Community

I've been trying to decide how to describe the feeling of being inducted into the Down syndrome community. It's hard to put into words because, first of all, I didn't choose to be in this group, like some mothers do when they adopt a child with Down syndrome. There's a lot of complexities for me to work through in regard to my own moral dilemma of being in a "club" that my baby forced me into. I say "forced" and it sounds kind of harsh to me, but it's the truth. I tend to have a little bit of imposter syndrome when I think about being among some truly incredible people in this club that have walked or are walking this path and, in my eyes, are way better mothers/advocates than I could ever dream of being. Sometimes, it's hard to believe I'm even in it at all.

Secondly, the people I've met (in person and online) and the experiences I've had are innumerable. I couldn't possibly recount very well the last few years of experiences without taking up loads of my time writing and your time reading. And frankly, just sitting down now for a few minutes to try and write a paragraph or two while my kids are napping is quite the process. I love my kids, but dang, kids are a lot of work! This morning I had to clean up a diaper blow out from Cooper that I discovered when I went to get him out of bed. He and his bedding both required a bath. And that was all before breakfast.

Anyway, I wanted to pick a couple experiences to share that mean a lot to me. Because we don't tell another momma, "Welcome to the club!" without meaning it. And we certainly don't call ourselves "The Lucky Few" for nothing.

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I don't think I've ever experienced such a sinking feeling as when I learned Cooper might have Down syndrome. I like to refer to this sinking feeling as "uncertainty." When I first met Cooper, I couldn't see any markers (hello, ignorance). But as soon as I'd learned of the markers, they are ALL I could see. And I stewed on the fact that absolutely no one around me had kids with Down syndrome. Which meant absolutely no one could ever understand what I was going through.

As I talked with the pediatrician the night that we got Cooper's blood test back which showed positive for Trisomy 21, I wanted desperately for the doctor to help me understand this path we'd just been placed on. I held back tears as I talked with him, uncertainty clawing at my brain and heart. The doctor told me briefly about a brother he has with Down syndrome, and how his parents treated him just like everyone else. This was a teency bit helpful, but then he launched into a speech about how the school system is so much better for kids with Down syndrome now days, telling me how my baby will have a great experience in school. I hadn't thought of Cooper's schooling (silly me, not thinking of my baby's education when he's 2 weeks old), and the thought added more overwhelm. My head started to spin, and I quickly understood that I needed to talk to other mothers. I cut the doctor off as he continued to talk about school and said, "Where can we go to find other families that have been through this? Where can we find other families that have kids with Down syndrome?"

And his reply: "Well, I'm sure with social media these days you can search on there and find about anything you're looking for."

............ I was flabbergasted! He had absolutely no resources to offer me to help me find other families to help us navigate Cooper's life. I thanked him for his time, hung up, and cried, feeling more uncertainty and more alone than I'd ever felt in my life.

Imagine, then, after being told to find help on my own, my desperation to find another soul who could relate and help me through the big feelings in my heart.

Social media did yield many friendships and offered belonging in a quicker and more comfortable way than I could have found in person, and I relied on it daily, sometimes hourly, just to try and get some idea of what Down syndrome looks like. But being online wasn't enough. I wanted, no, I needed, someone who had been in my shoes to look at me in the face and tell me, "It's going to be okay."

Enter Stephanie and Natalie.

Through my constant social media bingeing, I had come across a mom named Stephanie and her young son named Milo. She had shared about their experience of a birth diagnosis on her social media page, and I devour every word and every photo. I come back to her page often because she also lives in Utah, and one day I get the courage to message her and tell her about Cooper, the desperation to feel like I wasn't alone peaking at the moment I hit send on the message to this mother I do not know. Her response is a little surprising; she wants to come and see me and my new baby. At first, I feel hesitant. She is the first stranger who has offered to come to my home and talk with me, and I’m real not big on opening up to people I don’t know very well. I accept her offer, which is not like me at all- further proof of my desperation to find connection. Stephanie brings her friend Natalie, who also has a son with Down syndrome named Sam. These two ladies show up at our home with handfuls of gifts. They drive nearly an hour to get to us. Stephanie has a giant loaf of warm bread she baked that morning. It’s 10am when they’re at our doorstep, so she must have been up early to do that for us. They also bring a book called “The Congratulations Project” which contains letters from people with Down syndrome congratulating parents on their new baby with that extra chromosome. 

Stephanie and Natalie sit across from us in our front room on our old brown couches and talk with us for over an hour. They let us lay it all out there. It’s the first time we’d really talked with people in the Down syndrome community, and it feels incredibly freeing to talk with people who understand. They laugh and cry with us, and tell stories about their little boys. I find myself surprised at how comfortable it is to talk with them, and even more surprised when I don’t want them to leave. Their energy and light give me such hope in the future that I forget about uncertainty while in their presence. I want to keep them with me at all times to reassure me when I start to hyperventilate again for thinking and worrying too much.

This interaction with Stephanie and Natalie is so positive for me that I decide I need to run headfirst into the Down syndrome community. I want to meet or talk with as many other families as possible. They add me to a group chat of local moms who have kids with Down syndrome. Through this group I am invited to dinner with some other moms. Cooper is only a couple months old. I don’t feel ready to face a whole group of moms. Uncertainty nags at me and I hesitate to accept the invitation. But I figure I may never feel ready and, with the encouragement of my husband, I decide to go.

Once at the restaurant, I find that sitting down with these women feels like sitting down with old friends. Not once do I feel inferior for how I look or dress. Not once do I wonder if they’re judging me. Not once do I hope they don’t notice the postpartum zits on my face. There’s a feeling of gratefulness about these moms. They’ve seen things and been through things that most people don’t, and I can feel it gives each of them their own unique purpose and identity, so that they have nothing to prove or show. No one is pretending to be something they aren’t. Normally I would have tried to make myself small and avoid attention. But in this scenario, I’m glad to share my story and feelings, and I nod as they share their stories of their first moments as a parent in the Down syndrome world. I almost can’t believe what they are saying because, at times, it seems like they are reading my mind. I feel surprised because they are actually laughing about their diagnosis stories, and talking about their kids with an extra chromosome as if they’re just any other kids. I don't say this out loud, but I keep thinking how much I had needed to know that life would someday feel “normal” again.

We sit and talk for so long that the manager kindly asks us to leave because they are now closed. I leave with new friends and a new sense of belonging. I can’t explain exactly how I come to this conclusion, and I certainly don't have all the answers at this point, but I feel something new inside me come alive, like a little spark trying to light a fire. It whispers to me that this is exactly where I am supposed to be. 

And finally, the last (but not least) story I'll share for now, is about Rachel.

In the same local group chat that I'd been added to, I see a mom named Rachel reach out about ENTs in the area for her daughter, Rosie. Because I'm fairly new to the group, I don't want to inundate the veteran moms with messages from a newbie like me, so I decide I'll just message her privately. We chat briefly about her daughter's situation and I try to offer help with finding an ENT. Later that day, I find a mom named Rachel on Rising Kite's social media page sharing about their experience of receiving RK's bag of resources (see here if you're wondering what bag I'm referring to https://www.risingkites.org/bags). I wonder if it could be the same mom I'd messaged in the local group chat, so I return to our chat and ask if she did a video for Rising Kites. Sure enough, it was her, so now I have a face with the name. We set a time to meet up.

I often wonder if there are invisible matchmakers around us, who quietly guide us toward the people we need in our lives. Maybe, for me, Cooper is one of my guides. I can say for sure he led me to Rachel. On the day we met, we talked exclusively about Down syndrome for hours. It was the kind of easy, not forced conversation that is rare between two strangers. Later, we realized we hadn't talked at all about each other as individuals, but when we did, we discovered so many common interests and life experiences that it was laughable. Since then, Rachel has showed up for me in ways I haven't had before and has helped me navigate the stages of Cooper's life I'm in currently. And we are watching Cooper and Rosie become friends. I am lucky enough to have found someone who gets all the worries I have on my heart because of Down syndrome, and whose personality goes along with mine so well. Adult friendships are difficult, and even more so when you have kids that pull you 1,000 different directions at all times. And even more so when you have a child with disabilities. Most moms with typical kids just don't understand because they don't have to understand.

-They don't have to think about the stares, judgements, and misguided or straight up rude comments from other people, fighting to build "tough skin" in places where the was no need for it before.

-They don't have to constantly worry about their child's development and wonder if they're doing too much or too little.

-They don't have to constantly worry about illness and the potential it has to cause problems for a kid like ours.

-They don't have to wonder what will happen to their disabled child should they leave this earth before them, or having to say goodbye to their child too soon. Which is worse?

-They don't have to send their child to school and wonder how they will be treated, not only by peers but also by staff.

-They don't have to go through blood draw after blood draw to check for cancer, thyroid issues, or other abnormalities that have higher incidence in Down syndrome. After each test, each doctor appointment, holding their breath until the results come in, knowing that their child's little body just isn't the same as most peoples's.

-They don't have to navigate a medical system, insurance system, disability system, financial planning system, social system, education system, therapy and all its complexities, etc, etc, researching all the while and hoping and/or praying that they've learned enough and done enough to help and advocate for their child in the way that they need.

This list could run on and on, and each family has a unique list based on their child and their circumstances. You can see how isolating all these experiences could be. Maybe not everyone finds comfort in community, but I do. Just knowing someone has been there before or is walking alongside me and understands is so helpful for me. And the bottom line is: I would never had met these incredible people nor had these life growing experiences without my son.

And I will be singing into eternity that knowing these people and having these experiences has, without a doubt, made me a better person. Being in Cooper's world and meeting people here has helped me grow in so many ways.

-I see more, being slower to judge and quicker to give grace.

-I feel more, having witnessed the challenges of others in this community, and knowing that no two people have the same life path, and even if we did, we'd all still experience life differently.

-I notice people who have disabilities and don't feel bad for them. I used to think they needed pity. They don't! They are a person and deserve to be seen as such, with all the love and respect we offer to typical people.

-And speaking of differences, different is not bad! This is probably my favorite lesson I've learned since knowing Cooper. Before him, I wouldn't have consciously said, "Different is bad." But I felt that way without realizing it. I was afraid of and uncomfortable with differences. Now, I feel so far the opposite that I want to plaster it on every surface for everyone to read: DIFFERENT IS NOT BAD!

In my opinion, this is why we're The Lucky Few. This is why we say "Welcome to the club!" with a smile on our face and a hug loaded, if needed. It's funny because now anytime my husband and I find out someone is pregnant, we secretly hope their baby has Down syndrome. It's not because everything here is easy and happy all the time. But because we have experienced the way it changed our lives and hearts, the way it stretches us and expands our humanness, and we wish everyone could experience it, too.

If you've arrived here in this community and you're wondering why on Earth you have to be in it (like I once wondered), it's okay. I don't think the majority of us can step into a group and immediately feel comfortable there. But just know, in this club, we show up for each other. We carry each other when we need it. We cheer for each other every day. We see beyond ability and know everyone's trying their best. We have all been blessed immeasurably by an unexpected little chromosome and the beautiful person who carries it. If you're reading this and you're new to Down syndrome, let me be the first to say...

WELCOME TO THE CLUB! :)

Our family (before baby) at a local rally advocating for special need rights.