Dear Jillian,

It is the afternoon of your wedding. June 27, 2015. In two hours, you will take the walk of a lifetime, a stroll made more memorable by what you’ve achieved to get to this day. I don’t know what the odds are of a woman born with Down syndrome marrying the love of her life. I only know you’ve beaten them.

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You are upstairs now, making final preparations with your mom and bridesmaids. Your hair is coiled perfectly above your slender neck. Your bejeweled dress – “my bling,’’ you called it – attracts every glimmer of late afternoon sunshine pouring through the window. Your makeup – that red lipstick! – somehow improves upon a beauty that has grown since the day you were born. Your smile is blooming and everlasting.

I am outside, beneath the window, staring up. We live for moments such as these, when hopes and dreams intersect at a sweet spot in time. When everything we’ve always imagined arrives and assumes a perfect clarity. Bliss is possible. I know this now, standing beneath that window.

I have everything and nothing to tell you. When you were born and for years afterward, I didn’t worry for what you’d achieve academically. Your mom and I would make that happen. We’d wield the law like a cudgel if we had to. We could make teachers teach you, and we knew you’d earn the respect of your peers.

What we couldn’t do was make other kids like you. Accept you, befriend you, stand with you in the vital social arena. We thought, What’s a kid’s life, if it isn’t filled with sleepovers and birthday parties and dates to the prom?

I worried about you then. I cried deep inside on the night when you were 12 and you came downstairs to declare, “I don’t have any friends.’’

We all wish the same things for our children. Health, happiness and a keen ability to engage and enjoy the world are not only the province of typical kids. Their pursuit is every child’s birthright. I worried about your pursuit, Jillian.

I shouldn’t have. You’re a natural when it comes to socializing. They called you The Mayor in elementary school, for your ability to engage everyone. You danced on the junior varsity dance team in high school. You spent four years attending college classes and made lifelong impressions on everyone you met.

Do you remember all the stuff they said you’d never do, Jills? You wouldn’t ride a two-wheeler or play sports. You wouldn’t go to college. You certainly wouldn’t get married. Now… look at you.

You’re the nicest person I know. Someone who is able to live a life of empathy and sympathy, and without agendas or guile, is someone we all want to know. It worked out for you, because of the person you are.

I would tell you to give your fiancé, Ryan, your whole heart, but that would be stating the obvious. I would tell you to be kind to him and gentle with him. But you do that already, with everyone you know. I would wish for you a lifetime of friendship and mutual respect, but you two have been together a decade already, so the respect and friendship already are apparent.

A decade ago, when a young man walked to our door wearing a suit and bearing a corsage made of cymbidium orchids said, “I’m here to take your daughter to the Homecoming, sir,’’ every fear I ever had about your life being incomplete vanished.

Now, you and Ryan are taking a different walk together. It’s a new challenge, but it’s no more daunting for you than anyone else. Given who you are, it might be less so. Happiness comes easily to you. As does your ability to make happiness for others.

I see you now. The prep work has been done, the door swings open. My little girl, all in white, crossing the threshold of yet another conquered dream. I stand breathless and transfixed, utterly in the moment. “You look beautiful’’ is the best I can do.

Jillian thanks me. “I’ll always be your little girl’’ is what she says then.

“Yes, you will,’’ I manage. Time to go, I say. We have a walk to make.

Jillian and Ryan in their wedding attire standing with their parents on their wedding day

Paul Daugherty is the author of “An Uncomplicated Life,” a memoir of raising Jillian. It’s available on and on Paul’s website,

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I loved being pregnant. Well, not the whole time. I mean the “being told your child may have Down syndrome” thing was pretty full-on and there was the heat… oh god… the heat in the final weeks was torture.

Oh yeah, and the swollen legs and the extreme coughing at the smell of washing powder and toothpaste… now that I think of it, the tiredness was pretty real. The bone-crushing, soul-sapping fatigue that comes from growing one human inside another human was tough…

… But other then that, I absolutely loved being pregnant. I loved feeling myself transform from not-a-mother to mother day by day.

I loved feeling the first flutter of movement then feel the movements grow stronger and more insistent as he, too, grew stronger.

I loved that I could talk to my baby, play him the piano and sing to him knowing he could feel me and hear me. I loved that he preferred to lie on one side and his heel would stick out just below my ribs and I could rub it every day. After he was born I would rub the same heel, remembering he was once inside of me and now he was outside and the ridiculous craziness of how that actually came about.

I loved that my body told me instinctively what to do and how I learned not to question what it was telling me. I loved that after all the stress and the uncertainty about what Down syndrome would mean for my unborn child, I labored and birthed him exactly how my body told me to, exactly as I hoped it would be. I held in my arms a perfectly made, contently happy and healthy baby who needed no intervention, no medicalization, nothing extra from me or the doctors. I loved feeling the surge of happy hormones flood my body when I looked into his eyes for the first time. Yes, he had Down syndrome but he was healthy and perfect and loved.

As my son, Wade, is my only child, his is the only pregnancy I have known. I love talking about it and joining in when others share their pregnancy or birth stories.

I love it when you’re standing in a group at a party and someone announces they are pregnant for the first time. When the room erupts in kisses and hugs of celebration, I remember the giddy feeling I had when I found out I was pregnant. Stories start flowing from other parents about their own pregnancies and what to avoid and what to be on the look out for…

… And then there’s me.


Knowing full well my pregnancy and birth was amazing…

Knowing full well nothing I did prior to or after conceiving Wade caused him to have Down syndrome…

Knowing I wouldn’t change a thing about Wade…

… And knowing full well not everyone knows that.

Knowing I am the one in the room silently reminding the new mother that sometimes not everything they plan for goes to plan. When everyone starts reassuring a worried new mom about the upcoming scans and tests by saying everything will be fine, I can feel the unspoken exception of me and my scans and tests.

I know Wade is healthy and smart and funny. I know nothing I ate or didn’t eat caused him to have Down syndrome, but I also know how weird it must look to a new mother when I start giving out pregnancy advice.

I am genuinely proud of Wade. I absolutely love showing him off because he is hands-down the coolest person I have ever met. Unfortunately I still find myself hesitating to share my joys sometimes because I know that people don’t see things the same way I do. Occasionally I will see a little boy with a familiar style of blonde hair or the same quiet calmness as Wade and I will feel the urge to tell his parents how alike our kids are. But I know the look I might get when I do that… As though I am saying, “Your child looks/acts/behaves like he has Down syndrome.”

As though that is something bad or an insult.

As though that is all there is to my son.

This is the pervasive nature of disability, unfortunately. That parent might not automatically see I am talking about my son’s qualities and features instead of his diagnosis. I believe it wouldn’t be automatic for them to presume I am just as proud of my child as they are of theirs.

It’s a shame that the automatic reaction to disability is a negative one. Yes, my pregnancy didn’t go to “plan,” and yes, receiving those test results were some of the hardest days I have endured, but they were hard because I used to live in a world without Down syndrome, too. I knew nothing about it except what I was told to believe. I didn’t know how much has changed about Down syndrome. I didn’t know how capable he would be or how interesting it would be being his mom. I had no idea how much I would learn and change as a person.

It’s a weird feeling when pregnant women tell me how happy they are that their scans have come back with no issues. Don’t get me wrong, I am happy for them! Every new parent wants to hear that their baby is healthy, but it is impossible for me to hear anything other than how happy they are that their baby is not “like mine.” It would be unrealistic of me to presume that parents-to-be would sit waiting for their test results with fingers crossed, hoping the baby has Down syndrome. I understand that when your little train of expectation jumps the tracks and ends up on a line you had no intention of traveling, it can come with a jolt and a shock. But when I look at my little guy now, then think about myself doubled over with grief and shock on the floor when I was told of the diagnosis, I can’t match the two up anymore.

I know it’s hard for people to understand I’m not devastated about Wade having Down syndrome. I’m not feverishly making lemonade through gritted teeth because I was handed a giant basket of lemons. I am genuinely happy and wish I didn’t have to doubt myself when I talk about it with others.

For me, Down syndrome just is. Four years down the track, I’ve realized it is a thing that makes him different and a thing that has changed me and my world. But really, it’s just a thing.

It’s a thing I will share about my pregnancy because it’s a huge part of my story. It’s a thing I will talk about when I remember him as a baby or I think about him entering school, or plan for his future. It’s a thing that will cause me to lie awake at night with worry sometimes and cause me to grin uncontrollably with pride and happiness on others — in the same way all parents worry or gush over their children at different times.

It’s a thing that tells me everything and nothing about Wade at the same time.

Follow this journey on Embracing Wade.

Kayla Kosmalski is on her way to Florida to walk in the clothing company Gap‘s first show that features models with Down syndrome.

close up of kayla
Courtesy of the Princess Kayla Facebook page.

Kayla, 9, has Down syndrome and landed the job with Gap after seeing a posting for the opportunity on the Changing the Face of Beauty Facebook page, an effort to get brands to feature people with disabilities in advertisements. The Gap fashion show will take place on Saturday, August 22, at a Gap store in Miami.

It’s part of the launch of Ellen Degeneres’s new clothing line for kids in collaboration with Gap, GapKids x ED.

kayla modeling white jacket
Courtesy of the Princess Kayla Facebook page.

“I am just ecstatic for this opportunity for Kayla,” her mother Amy Kosmalski told The Mighty while aboard her plane to Miami and awaiting takeoff. “The campaign is just incredible. It’s showing the world that our kids are more alike than different and they deserve the same opportunities as the other kids do. Yes, Kayla has Down syndrome, but she’s smart and funny and sassy like all other kids.”

“And ‘drama!’” Kayla added. Yes, she’s also dramatic, her mother confirmed with a laugh. Kayla’s favorite parts about modeling are waving, blowing kisses and “rocking the stage.”

kayla in heart outfit
Courtesy of the Princess Kayla Facebook page.

Changing the Face of beauty has put 14 girls of all abilities in touch with the Gap campaign, three of whom (including Kayla) have Down syndrome. There is also a girl with a limb difference named Fern and a girl named Charlize who has a chromosome abnormality. They will walk the runway at two times on Saturday.

“We could not be more thrilled to be a part of this,” Katie Driscoll, co-founder of Changing the Face of Beauty, told The Mighty in an email. “The opportunity to participate in a event like this is a huge win for our organization as well as these girls who happen to have disabilities and the girls who do not have a disability. Our message is simple: Kids are kids regardless of their ability, and they look great when given the opportunity to be featured together. This gives us the opportunity to really show the world what is possible when all kids are represented in advertising.”

Check out Kayla’s Facebook page or the Changing the Face of Beauty Facebook page for more information on all the other models taking part in the show. 

A new video is showing the world exactly what it looks like when dreams come true.

Ruby’s Rainbow is a nonprofit organization that provides scholarships to adults with Down syndrome who want to pursue post-secondary education. Students ages 18 and over can earn scholarships worth up to $3,000 (one applicant each year is awarded $5,000), and the money can go toward college, community college, vocational training or any other program of the student’s choosing.

It is our goal to create awareness of the capabilities of these amazing individuals and help them achieve their dreams of higher education,” the organization’s website reads.

It can be difficult to describe how much a little extra support can mean for students with special needs, so Ruby’s Rainbow decided to show people. On August 20, the organization released a two-minute video (below) featuring some of its 2015 scholarship recipients in the moment they each learned they’d be receiving a scholarship. Student after student excitedly rips open an envelope and beams into the camera as they announce, “I got the scholarship.”

The students in the video below now have an opportunity to show the world their true potential. But more important, they have a chance to fulfill their own aspirations.

I feel very good,” one of the scholarship recipients says in the video below. “And I am really proud.”

Take a look at the video below.

To learn more about Ruby’s Rainbow or apply for one of the 2016 scholarships, visit the organization’s website.

I know you’re scared.

I was there. I remember sitting in a crowded room, literally shaking when I was on the phone with my doctor as she said the words, “Your test came back positive for Down syndrome.”

I remember her trying to tell me how precious these kids are and how her sister loves being a special education teacher.

I remember trying to walk through a parking garage and realizing I was holding my breath and just trying to hold it together until I got to the privacy of my car.

I remember it taking forever before I got to my husband’s office for me to tell him as I just tried to process and accept it. I was just a shell of a person in these moments. Complete shock. Vacant.

And then my husband told me it was going to be OK. He said we were going to “rock this new normal.” I wanted to believe him, but it was hard.

I’d love to tell you I immediately accepted it and was excited to meet our baby girl and didn’t care about the diagnosis. But I did care — mostly because I just didn’t know. I was naïve and hadn’t been around a lot of people with Down syndrome. I made the mistake of Googling some information. Horrible idea. We went to a high-risk doctor to follow up. Terrible experience. Smart doctors are sometimes really bad with their words and their bedside manner can be excruciating.

Weeks and months went by and I was sad. Why was this God’s plan for our lives? This isn’t what I had pictured. I didn’t plan on this. Ever. But it was our future, and as upset as I was, I still wholeheartedly believed all life was so precious, made by God, with no mistakes. Nothing but his Plan A for our lives.

So we began reaching out and meeting some families in the Down syndrome community and talking to friends. I began to thaw. I met a super cool mommy with a 1-year-old baby girl with Down syndrome. I just stared at her and saw how beautiful she was and how happy her mommy was. I thawed a lot more.

I began to be quiet and listen to God. I believe his comfort was always there and his promises were always true and I began to feel better. Still a little fearful of how different our new normal would be, but better.

And what you’re feeling right now is OK. It’s normal. Take some time to understand the fact that your normal is going to be a little different.

But oh my, when she got here, all those feelings and heartache I just told you about were — poof — gone completely.

I was enamored with my precious, perfect baby girl. I was so proud of her, so happy to be her mother and so grateful to God. I believe he chose us to be her family. I believe his plan is perfect, and he gives really great gifts — better than we deserve, even if they didn’t seem like gifts we would pick at the beginning. As I read over this post now and remember how I felt at the beginning, I feel completely ridiculous. But it’s where I was, and it’s part of our journey.

Where you are right now may seem scary. It’s different than what you expected. Being scared doesn’t make you a bad person, but I promise — oh, how I promise — that this new normal is beautiful. Every single thing is now celebrated, the love is abundant and the community is amazing.

So please know how you feel right now is fleeting. It’s new, it’s a surprise, but it’s going to be amazing.

Jamie Bradford the mighty.2-002

Follow her journey on Normal as We Know It.

Country music superstar Kenny Chesney performed in front of a record-breaking crowd of more than 58,000 fans in East Rutherford, New Jersey on August 15, according to the country music site The Boot. But the show was especially memorable for one fan in particular.

During the show Chesney leaned down mid-song to high-five a woman with Down syndrome. The girl then asked if she could come on stage and say something into the microphone, so Chesney pulled her up onstage with him.

Kenny Chesney is my one true love,” the woman tells the audience in the video below. “I want to kiss him right now on the lips.”

Then, Chesney leaned in and gave the fan the moment of her dreams — a kiss on the lips.

Watch the magical moment in the video below.

As the crowd went wild in response to the kiss, the woman explained to the audience that Chesney’s music had gotten her through tough times as a teenager and that it was her grandfather’s dream to see her perform onstage with the musician. Chesney embraced the woman and held her next to him as he launched into a performance of the song, “Wild Child.”

That young woman had so much heart, so much spirit,” Chesney said following the encounter, according to The Boot. “She was just fearless and true and wanted to tell people what was on her mind. Talk about inspiring all of us about how to live our lives.”

Watch Chesney and his surprise guest perform “Wild Child” in the video below.

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