October 20, 2021
Come Be Brave With Me: Joyfully Raising a Daughter with Down Syndrome
Ever start talking with a friend and the conversation is so good you lose track of time?
Well, that’s exactly what happened on this episode when my lifelong friend and sister-from-another-mother, Caewyn Barnett, joined me to share about her motherhood journey. This is an intimate conversation between friends who dearly love each other.
This conversation was long overdue and something I wish I’d initiated 3 years ago when our girls were born. For whatever reason, I didn’t know how to have this conversation or was afraid to say the wrong thing because Caewyn’s daughter, Ella, has Down syndrome. Our girls are 3 months apart and much more similar than they are different - they’re both passionate, empathetic and love a good dance party!
I know I’m not the only person that’s wondered what it looks like to show up for a friend or family member raising a child with Down syndrome or some other diagnosis. We often fail to ask the uncomfortable questions and as a result it can leave the ones we love feeling alone and isolated.
Or maybe you’re the one feeling isolated and alone. Perhaps you’re a mom of multiples. Or you or your partner has a health diagnosis that impacts the way you parent. Maybe you’ve experienced pregnancy loss or are a single mom. Or maybe you’re like Caewyn and are raising a child with Down syndrome.
Whatever your story, we all need people who see us and are brave enough to walk into the unknowns together. And my hope from this special 2-hour episode is that you’ll feel empowered to ask for help or be the help someone needs in their life today. This is what motherhood is all about...walking hand-in-hand together in love.
So without further adieu let me introduce you to Caewyn Barnett and enjoy this beautiful conversation.
Moments You Don’t Want to Miss
[18:40] Discover how Caewyn and her husband processed the news of an early Down syndrome diagnosis
[39:50] Hear how you can learn to advocate and find support for yourself and your baby when you’re walking through a high-risk pregnancy
[59:59] Listen to the mix of responses friends and family had to the news of a Down syndrome diagnosis
[1:17:22] Not sure what to say? Learn what language is most appropriate to use when referring to a person with Down syndrome
[1:47:40] This is what Caewyn wants to share with parents processing through a new Down syndrome diagnosis
What To Do If Your Babe Gets A Down Syndrome Diagnosis
Kelly Jo: What would you tell a mom who just found out her baby has a Down syndrome diagnosis?
Caewyn: Find your people and build your community. Find providers in the medical community who know what they’re talking about. I think that’s really important. If I could talk with somebody who’s just received that diagnosis I’d tell them to find their community of people that will tell you real information, good information and who are your people who will stand with you.
And just know that being a mom to a babe with Down syndrome is going to be so much fun! I know that if someone had said that to me at the time I couldn’t have taken it in but I would have remembered that they said it and how it made me feel.
How To Show Up When A Friend Gets A Down Syndrome Diagnosis
Kelly Jo: I can relate to not knowing how to show up or what to say and as your friend or if I should even acknowledge the differences Ella has because of her Down syndrome. I just didn’t know how to show up and didn’t want that to be a factor because she’s such a joy. In the end, it created more isolation for you. Looking back, what would’ve been more helpful for you?
Caewyn: What is helpful and the things that mattered are when I knew that people were talking to me openly and sincerely.
The fact that you said, “Tell me how to show up Caewyn. I don’t know how.” I craved knowing what it was like for my close friends and family when I told them Ella’s Down syndrome diagnosis. People didn’t want to say anything bad.
I really went through a season of craving, and asking people what it was like for them when they found out about the diagnosis because there wasn't anyone to share that experience with. I wanted to know, “Were you sad? What was your first thought?” I had all these feelings. Did other people have all these feelings too?
I wanted the people in my life to have the passion to learn that I'm having. And it's not that they should have. It was because this is a steep learning curve and I'm feeling alone in it. I wanted the people close to me to be brave with me in the journey.
Finding Strength As A Parent
Kelly Jo: I’m thinking about all the moments you've shared right now and I cannot imagine the courage you've had to show up with time and time again. It’s such a reflection of who you are as a person, as a mom, as an advocate for your family, for your daughter, for your son.
You’ve had to be brave and strong. And strength doesn't mean you don't struggle or there's not moments of extreme pain or grief or weakness or questions or doubts. But you’ve had the courage through all of that and to show up and say, “I'm here for all the unknowns”. And I think that's remarkable.
Caewyn: Thanks Kelly. Strength is those things though in parenting right? Let me first say that I don't want to be dismissive of your words right now and that means a lot to me.
And hearing them I can't help but think of so many parents. And isn't that what strength is? Strength isn't having it together and knowing the answers and being tough. Strength is facing those moments when you don't know the answers, and you're not tough, and it's hard and it's confusing.
I think for so many people, at least for myself, it's that I can't make time go any faster than one moment by moment. And this is all I get to know at this moment.
How To Refer To Someone With Down Syndrome Respectfully
Kelly Jo: What language can we use that is inclusive?
Caewyn: Language is just constantly fluid and changing. So what I think is important is that it's okay to ask. I don't know anyone who would say, “I wish no one had asked me if this was how they wanted this said or what was okay.” I can tell you my answer, but I encourage all the listeners out there...don't be like, “Oh, okay. I heard this on this episode and so this is the way that it is.” But instead ask, “Hey, I heard this. What is it for you?” to whomever you’re talking to.
But in terms of language, we in the Down syndrome community try to discourage people from saying a “Downs kid”. And that’s the one I hear the most. Sometimes I correct people and sometimes I don’t depending on the situation.
That term is really so prevalent in our education system and medical communities. And I hear people say it with love like, “she’s a Downs baby”, which is why I go back to saying how language is fluid and how important it is because it’s a very little thing, but it does matter. Ella isn’t a Downs baby. She is a person with Down syndrome.
There’s ways to advocate that are big and bold and important. And then there’s the little things that make a difference over time. This is where I think those types of things make a difference over time. And this applies to many types of abilities and differences.
We can all think of different ways this might apply to other people or groups that have some kind of stigma around them. People will be like, “Oh, but I don't mean it that way” or whatever. If you don't mean it that way, let's just not say it that way.
Advice To Your Younger Self
Kelly Jo: If you were to turn back time and talk to yourself at the very beginning, what would you tell yourself?
Caewyn: If I could go back to myself, especially that day I got the phone call, I would just be like…and it’s silly because if you say, “it’s gonna be OK” in the moment it doesn’t matter because you need to go through the emotions right? But I’d be like, ”You can’t even fathom how much fun your life is about to be.” And it’s true!
A Few Closing Thoughts From Our Conversation
This was a really special episode. Not only was it an intimate glimpse into Caewyn’s story but I learned how I can better show up as a friend for other mamas in my life.
If you’re going through something really hard or have a friend who’s walking through something...my hope is that you walk away from this episode with hope. Things can get crazy hard in the moment: you get a diagnosis, you hear news you never expected or crap hits the fan.
But in the midst of that, there’s always hope and if you choose to be present in the moment and step into tomorrow’s unknown with people you love you...you’ll look up one day and be blown away by how amazing your life is.
And that’s something I’ve learned from Caewyn.
More From Caewyn Barnett
Caewyn is a brave, beautiful momma of two and a Licensed Mental Health Counselor that lives with her husband and two children in Seattle, WA. She loves playing with her kids outside, teaching them how to cook (she makes the world’s best chocolate chip cookies!), and exploring with friends. When she's not on an adventure with her kids you can find her at the gym or daydreaming!
Email us at firstname.lastname@example.org and we’ll forward it on!
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