Chosen and Cherished: A Celebration of Down Syndrome

October is World Down Syndrome Month, and we’re celebrating the beauty that comes from loving someone with Down Syndrome. Inspired by a touching poem, we talk about the feelings that come with an unexpected diagnosis — the fear, the learning, and ultimately, the joy. What begins as something overwhelming can turn into one of the greatest blessings. We’re reminded that every single one of us is a beloved child of God.

Shoutouts & (Clickable links below)

National Down Syndrome Society

Welcome to Holland Poem

Transcript

Favorites on Instagram!

@nothingdownaboutit

@troymadeit

@amanda_booth

@ Vallifit

Transcript

Clare: Welcome to Sisters: Latter-Day Voices.
Candice: I'm Candice.
Clare: And I'm Clare. Today we are going to talk about Down syndrome. So, do you guys know I have a daughter with Down syndrome? She’s nine, and I wanted to talk about it because October is Down Syndrome Awareness Month, so I thought that would be perfect.

So first off, I just wanted to share—what is Down syndrome? Because now that I know, it’s so obvious, but I still feel like a lot of people don’t exactly know. Like, one example: the other day we were at a mountain biking weekend race, so we had a whole bunch of families staying at this one place together. And this lady I don’t know very well was like, “Okay, now which kids are yours?” So I was explaining which ones are mine, but I didn’t have my youngest daughter with me. And she’s like, “Okay, that one—what does she have?” She was trying to figure out what it is. And I was like, “Yeah, Callie—she has Down syndrome.” And she’s like, “Oh, okay. So like… when do you catch it?”

I was just like, “Okay, you don’t catch it. You’re born with it, sweetie.” But I was trying to be nice. It’s just funny because a lot of people still don’t know. It’s like—no, you don’t catch it. You can’t share a drink with her and then “catch” Down syndrome. You’re just born with it.
 Candice: Yeah.
Clare: So I think most people know, but I was still a little shocked. I don’t know.
Candice: Yeah.
Clare: So, what is Down syndrome? It’s a genetic condition. Inside each cell of our body is a nucleus that holds all of our genetic material. We all have twenty-three pairs of chromosomes—half from our mom and half from our dad. Down syndrome happens when there’s an extra copy on the twenty-first chromosome. So everyone has two copies of each chromosome, but for people with Down syndrome, they have three copies. Because of that, their body and brain just develop differently.

That’s the science behind Down syndrome. I just wanted to share a couple of facts: there are three types, but for the most part, ninety-five percent of people with Down syndrome have Trisomy 21. The life expectancy for people with Down syndrome has increased—back in 1983, it was twenty-five, and today it’s sixty. So that’s huge.
 Candice: That’s awesome. That’s a huge increase.
Clare: Yeah—huge. Okay, so one in every seven hundred seventy-five babies in the United States is born with Down syndrome. It’s the most common chromosomal condition.

Some common physical characteristics—because people with Down syndrome do have certain physical traits, whereas with something like autism, you don’t have physical characteristics—so Down syndrome is a little easier to recognize. Some common traits are: a flat bridge on the nose, a big crease on the palm, extra space between the big toe and the one next to it, widely spaced eyes with a little upward slant, and usually straight hair. There are also some structural differences in their mouth—they can have protruding tongues and smaller ears—and they’re normally shorter in stature.

As for medical conditions, a lot of people with Down syndrome have congenital heart defects, respiratory or hearing problems. Alzheimer’s disease, childhood leukemia, and thyroid conditions are also more common. But luckily, most of these are treatable, so people with Down syndrome can live very healthy lives.

Okay, so when she was born, I didn’t know until it was a hospital diagnosis. It was kind of rough in the hospital. At that time, she wasn’t passing her hearing tests, and I was just getting overwhelmed with information. I didn’t know if she’d be able to hear. They rushed her off to the NICU and told me she had a little heart problem. There were all these things the doctors were saying—“this is going to be wrong, that is going to be wrong”—and I was completely overwhelmed.

To make matters worse, I didn’t have the best experience in the hospital. Someone I didn’t know very well came to visit me—she had a daughter with Down syndrome—and she just was not positive at all. It scared me so, so bad because she pretty much said my life was going to be over, and said all these terrible things.
 Candice: Why would you go to somebody who just had a baby—with tons of hormones going through their body—and say that? That’s just not positive anytime. But yeah.
Clare: Yeah, it definitely was scary and not the best. But what I learned from that is—I didn’t know what to expect. So I started looking on the website, the National Down Syndrome website, and it really helped. I realized a lot of parents were scared and afraid at first, but they loved their child so much. They kept saying, “You hit the jackpot if you get a child with Down syndrome.” And I thought, okay—these are all positive things. Maybe it’s going to be okay.

That website really helped me, especially going from knowing nothing to hearing firsthand experiences. The woman who visited me didn’t seem to enjoy her daughter or have a positive outlook. But I realized at that moment that everyone parents their child differently—whether typical kids or not. So just because that’s how she felt didn’t mean I had to. That really helped me.

Some people have kids who all play soccer or football, or they discipline differently, or approach parenting in their own way. And I thought, okay—this person sees her child one way, but I don’t have to. That helped me get in the right mindset.

One of the cool things that happened is that I was incredibly overwhelmed for a while—probably the whole first year, to be honest. But I remember Callie—she was a great baby. She hardly ever cried. Honestly, she was fabulous. But I remember being overwhelmed with therapy and doctor appointments. I actually went back and counted how many therapy appointments and specialists she saw in her first year—it ended up being fifty-two. So it was a lot.

But I remember, it was like a whole month had gone by and Callie hadn’t really smiled yet, or even really locked eyes with me. Normally, a typical baby does that pretty soon—even just a slight smile, or that moment when you can tell they’re really looking at you. I still wasn’t getting that connection with Callie. I wish I knew exactly when it was, but it was probably at least a month or two later than typical.

My husband was playing in a nighttime volleyball game, so I was just by myself with her. All my other kids were asleep. I was sitting there holding and snuggling her, and she had been alive for a few months. Then she totally locked eyes with me—and she got this little smile. It was so small and brief, but I remember sitting on the couch bawling, like, “Oh my gosh, she sees me! She recognizes me as her mom, and she can smile.”

Even that one milestone—before I had her, I wouldn’t have thought of it as a milestone—but for her, it was huge. To this day, I’ll always remember how exciting that was: the first time she recognized me, smiled, and interacted.
 Candice: Her smiles are still the best. One of the things I love about Callie is that whatever she’s feeling, it’s one hundred percent genuine. She’s never putting on a show. Whatever she’s feeling—that’s how she’s feeling. So if she smiles at you, it feels so good because you know she’s genuinely happy.
Clare: Um-hm.
Candice: She has great smiles. And also, when she frowns—it’s the saddest thing in the world. Like, full lip turn. You’re like, oh my goodness—how could you ever not give her what she wants when she has that face? It’s so sad when she has a frowny face.
 Clare: That is very true. She’s definitely great on both sides.

I wanted to share some helpful tips for being around someone with a disability, because even though we’re not that old—we’re in our forties—I feel like growing up...
 Candice: I’m not there yet. I’m almost there.
Clare: Okay, well, me in my forties—I feel like people around my age grew up when people with disabilities were kind of hidden. They were never in typical classes. We really missed a chance to get to know and interact with people with disabilities.

Now, I think public schools do such a good job with inclusion. So I just wanted to share some helpful tips for people who aren’t necessarily around many people with disabilities. One thing is the “R” word. I think when we were growing up, it wasn’t seen as that bad of a word—“retarded”—but now it’s incredibly outdated, offensive, and honestly considered hate speech. So if you’re going to talk about someone with a disability, better terms are “intellectually disabled” or “developmental disability.” Some organizations also say “differently abled.”

Candice: Both of us used that word when we were younger, and yes, we weren’t aware of it being as rude as it was. So, I mean, we’re not perfect—but as you get older, you realize things.
Clare: Yeah, yeah, I used it. And now when I hear other kids use it, I’m like, “Oh hey, guys, let’s use something else.” And I don’t think people mean it in a derogatory way—I really don’t. I just think it’s being naïve. So it’s about educating.

Something I also learned—and I didn’t realize this until I had Callie—is how to describe a class full of kids that don’t have special needs compared to a class that does. Some people just don’t know the right words, so they’ll say, “Oh, the normal class” or “the normal kids.” Well, Callie’s normal too. So a better word choice is “typical peers” or “the typical class.”

Another thing that’s good to know—it’s called people-first language. A person’s identity is separate from their disability. I’ll use my daughter Callie as an example. Instead of saying, “My disabled daughter Callie,” that labels the diagnosis first and then Callie. No—she’s a person first. So I would say, “Callie with Down syndrome.” You label the person, not the disability. The disability is second to who they are.
Candice: So if I say, “I have a niece with Down syndrome,” that’s how I should say it—like, “My niece Callie has Down syndrome.” Okay, yeah.
Clare: Right, instead of saying, “My Down syndrome niece.” Perfect.

And then a couple of other things I wanted to say—don’t say sorry when someone gets a diagnosis. You can say, “Hey, I’m here for you. How can I help you? I want to learn about this with you.” But don’t say sorry, because to me, there’s nothing to be sorry for.

And lastly, don’t be afraid. Before I had Callie, I was always afraid—like, do I make eye contact? What if I say hi and they don’t say hi back? That’s okay. Callie is behind on her speech, but she loves when people try talking to her, even if you can’t understand her. I’d encourage everyone to step out of their comfort zone—try smiling, saying “How are you?”, giving a compliment, or a high five. Even if someone with a disability can’t verbalize how they appreciate it, they’ll smile or give you a hug. It’s such a fun feeling—getting to know people who aren’t necessarily like you.
 Candice: I’ve really tried to do that because you always challenge me to. I’ve been trying to be better about getting out of my comfort zone. If I see somebody at Costco or Café Rio or something like that, I just try to say hi or smile—even though it feels weird because I don’t know why I’m self-conscious. Who doesn’t like when someone says hi or smiles at them?
Clare: I know! I love when you call me and say, “Hey, I saw someone today with Down syndrome and I went up and talked to them.” It makes me so happy.
Candice: I told you about that girl on the swim team this summer—she was so cute! She has Down syndrome and she was on the swim team, and everybody cheered for her. It was just awesome that she was out there doing it. And she’s so cute.
Clare: Yeah, that’s amazing. I love that. So I just wanted to share one last thing—it’s my favorite poem of all time, and I share it with everyone.

It’s by a lady named Emily Perl Kingsley, and it’s super famous in the Down syndrome or special needs community. She has a son with Down syndrome, and it’s called Welcome to Holland. This is my all-time favorite poem—it just sums up everything. So I’ll read it to you, and I’ll also share the link. At the end of the episode, I’ll also share links to my favorite people with Down syndrome that I follow—they’re just the best and will definitely brighten your day.

So here’s the poem:

I am often asked to describe the experience of raising a child with a disability—to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this:

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans—the Colosseum, Michelangelo’s David, the gondolas in Venice. You may even learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Holland.”

“Holland?” you say. “What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland—and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would never have met otherwise.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around and begin to notice that Holland has windmills, and Holland has tulips, and Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever go away, because the loss of that dream is a very, very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, very lovely things about Holland.

And that is just my favorite poem. It sums up being a mother to a child with Down syndrome—or with any disability—perfectly.
 Candice: That’s beautiful. I think we should just end on that, because that’s really pretty.
Clare: Okay, perfect. Well, thank you so much for joining and listening with us today. We love you and know that God loves you.
Candice: Bye.