Everybody has an inner rockstar.

Elvis 03
Elvis, by Sherri Harnisch for NDSS

Photographers Wendy Zook, Sherri Harnisch and Nicole Starr worked with the National Down Syndrome Society (NDSS) to highlight just that in people with Down syndrome.

The photographers met up in New York City on Dec. 7 and 8 for a photo shoot. They were met with a team of makeup artists, hair stylists and more than 50 models ranging in age from 11 weeks old to 50 years old.

The models were assigned a music icon and then photographed in a way that evoked their inner rockstar.

Elvis Costello, by Wendy Zook for NDSS
Elvis Costello, by Wendy Zook for NDSS

Some of the photos will be turned into recreations of famous album covers that will be used as posters at the NDSS Spring Gala, the organization’s biggest fundraiser event of the year, held at the B.B. King Blues Club in New York City in March.

Usher, by Wendy Zook for NDSS
Usher, by Wendy Zook for NDSS

Both Zook and Harnisch have children with Down syndrome, and Starr is close with Zook’s children. All three photographers agree the shoot was a labor of love.

“It was such a joy, pleasure, honor and privilege to be a part of this amazing photo project,” Harnisch told The Mighty in an email. “Our family has advocated on behalf of legislative issues effecting people with Down syndrome on Capitol Hill several times as part of the NDSS Buddy Walk on Washington. NDSS has also empowered and equipped us to get involved on the state level. It felt good to have this opportunity to volunteer and give back in this capacity.”

nicole starr photography ndss elton john
Elton John, by Nicole Starr for NDSS

“For me it was really special on a personal and professional level,” Zook told The Mighty. “This really hit close to home and tugged at the heart strings a few times… it was so upliftng.”

Diana Ross 01
Diana Ross, by Sherri Harnisch for NDSS

“I want people to look at these images and smile,” Harnisch said. “It’s my hope that hearts are a little happier after seeing the joy and pride on the faces of our fabulous models, all of whom did an outstanding job working the camera.”

Marky Mark 01
Marky Mark, by Sherri Harnisch for NDSS
Adele 01
Adele, by Sherri Harnisch for NDSS

“I would love to have people look at these photos and walk away either with a more positive outlook on Down syndrome or special needs in general,” Zook told The Mighty. “I hope it brings joy and comfort, but I also hope that it will provide a more positive reminder of the great potential there is for all these individuals with special needs.”

See more of the photos from the Rockin’ NDSS Studios shoot below: 

Kelly Clarkson 01
Kelly Clarkson, by Sherri Harnisch for NDSS
nicole starr photography ndss bob dylan
Bob Dylan, by Nicole Starr for NDSS
nicole starr photography ndss tina turner
Tina Turner, by Nicole Starr for NDSS
Joan Jet 02
Joan Jet, by Sherri Harnisch for NDSS
nicole starr photography ndss KISS
KISS, by Nicole Starr for NDSS
nicole starr photography ndss KISS 2 (1)
KISS, by Nicole Starr for NDSS
Taylor Swift 03
Taylor Swift, by Sherri Harnisch for NDSS
Elvis, by Wendy Zook for NDSS
Elvis, by Wendy Zook for NDSS
nicole starr photography ndss madonna
Madonna, by Nicole Starr for NDSS


Last year at this time we were snuggling our cozy November baby. We were loving on his health despite him being born 18 days early. We were starting to swallow his staggering Down syndrome diagnosis and wrap our heads around the package of a new future. It was all going as well as can be expected when our newest addition started to seem grey. So, in the coldest of colds and the deepest of snow, I rushed him to his pediatrician who in turn rushed him to the hospital in an ambulance.

There we remained for 13 days: one day after his due date, through Christmas, through his 1-month birthday, right up until New Year’s Eve. We endured anguish as our baby boy became a teeny pin cushion and was diagnosed with respiratory syncytial virus and put on life support.

Here’s what I will miss about that hospital stay this Christmas.

10. The hospital food

Yes, I said the food. Midnight milkshakes became a comfort when the unknown was glaring. It was a chance to desert those four walls and our baby for just a moment. Instead, we would dash to the dining hall and decide what snack to eat. Relief came in the form of deliberating over something that just didn’t matter.

9. The abandonment of Christmas commitments

I was juggling the hustle and bustle with a new baby, and my “new normal” capsule was stuck in my throat. I was flailing. The hospital trip gave me an out. I said “Bah humbug” to Christmas cards, cookie cutting and perfectly wrapped presents. These values still stick to me like gum drops on gingerbread houses. Christmas “appearing” perfect is no longer on my list of things to do, but letting go of stress is. My goodness, it is freeing.

8. The holiday spirit in the hospital

The hospital takes on a life like the North Pole in spite of (or because of) what is happening inside. Snowman scrubs and Santa hats visited our room alongside holiday balloons and a giant stuffed dog with a cozy red scarf. There was a workshop of sorts, and we were persuaded to pick out a ridiculous amount of toys for our boys. Then volunteer elves begged to wrap them. It was electric. It was as if the people working there knew lives depended on spirit as much as medicine flowing through IVs.

7. The love of the little things that matter

Never once did I miss a party, card or the gifts that fill St. Nick’s sleigh. Instead, they were replaced with delicious goodies like friendly faces, crying hugs, a hot cup of real coffee, a smile, a hand to hold and a prayer to share. Those things mattered. They fueled us.

6. Family meals waiting for us in the fridge

During the holidays we all have our family’s go-to dish. Mine happens to be my mom’s chicken soup, served hot with smells swirling before the roast beef arrives. There are others from both my family and my husband’s. On Christmas you just can’t get to them all – because of time or because your pants don’t fit – but in the hospital, there they were in the fridge just waiting for us. They screamed home, normalcy and comfort. With a zap of the microwave, for just a moment everything seemed right in the world.

5. A united front of friends and family

Celebrations were celebrated without us. Santa still came on Christmas Eve and velvet warmed our loved ones. We missed it… but we were never forgotten. Our friends who are more like family took up a donation at their annual party as they kept us in their prayers. Raffle tickets were bought in our honor and doled out by loved ones who cared. My brother kept the mood light when he visited me on Christmas Eve and my own belly laughed like a bowl full of jelly. My in-laws sat vigil over our tiniest patient so we could attempt a normal Christmas morning with our 3-year-old , and a dear friend sat with my husband and me at the hospital on Christmas night.

We shared a couple of snuck-in brewskis as we spread giggles over our snug little bubba. I heard the bell ring last Christmas and I again believed in its magic.

4. Miracles in the making

Real, gift-giving angels disguised as nurses and doctors worked tirelessly to save my baby’s life. They spent their holidays with us. Many shared stories of their children with me and tirelessly watched over mine. I’d fall into a restless slumber as they peered over my darling’s crib and wake up to them doing the same. I was warmly greeted when I awoke and felt something missing when they briefly left to be with their real families. I have a new, shiny, Christmas-tree-topping respect for these angels who walk our earth and the miraculous works that they perform.

3. Tender, stolen moments with my husband

During our extended stay at the local ritzy pediatric intensive care unit (PICU), my husband and I had a luxury. He was on school break, so neither of us were working. One of us was always home with our 3-year-old while the other made camp with our ill infant. This left little time for us to be together. It also created precious fleeting moments when we were. These lingering, brief moments strengthened our bond and  taught us as much about our love for each other as they did about our strength. I would never trade these most personal minutes, and I wish life allowed us always to take such good care of each other.

2. Jesus

We know the story of Christmas, the story of Mary and Joseph and how there was no room at the inn. Somehow, Kris Kringle and twinkly lights overshadow the story of a special little baby born in Bethlehem. However, when your child is fighting to survive and you have nothing but time, waiting and faith, I believe Jesus becomes all that is important. I discarded the commercialized version of the holiday and was able to spend some real quality time with the Father, the Son and the Holy Spirit. It felt good, and it felt right. This year I have succumbed to Santa, Rudolph and tiny little elves for my 3-year-old. Don’t get me wrong, that feels pretty good, too. But I will always gratefully recall that one Christmas I spent in solitude with Emmanuel.

1. The gift of all gifts

Gifts are tricky. They are tricky to give and to get. More times than not I’ve gotten something I didn’t want, couldn’t use or didn’t need. I’ve also given gifts that were duplicates, didn’t fit or didn’t matter. So, it feels exhilarating to get something I really wanted. Something I wished for more than any Cabbage Patch Kids doll, roller skates or Easy-Bake Oven. The gift of life. That’s the best present under the tree.

So although I may be on the nice list this year, nothing can match last year’s gift and nothing ever will.

Follow this journey on Finding The Joy

The Mighty is asking the following: Create a list-style story about the holiday season related to disability, disease or mental illness. It can be lighthearted or more serious — whatever inspires you. Be sure to include an intro for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

I’m pretty sure Joseph was the first stepparent. He seemed to be pretty awesome. I would guess that on Christmas Day/Jesus’s birth, Joseph lovingly supported Mary, stepped up to the plate and did what needed to be done, like so many stepparents do.

If I could tell my husband, the stepparent to my child with Down syndrome, one thing during this Christmas season, I’d say…

Thanks for loving us.

Let’s be honest. Lots of parents love their kids, but I believe being a stepparent is a calling. It can take a special heart to love another child who is not biologically yours, because sometimes…

We don’t get to spend a lot of time together alone.

I can’t speak for all special needs parents, but the time I get to spend alone with my husband is limited. Between work, school and a limited number of sitters, date nights are few and far between. I apologize, but never once have I heard you complain.

I love that never once have you said, “What if?”

Since we said “I do,” you have never questioned or asked, “What if she is with us forever?”

My daughter is 13 and currently has multiple disabilities. I love that you never entertain my fear, but instead, help me plan soundly for her future.

Speaking of her future, thanks for helping me plan in general. 

I’ve been the single parent before — alone at IEP meetings, wondering what direction to take, or at the doctor’s office, questioning what the next step should be…

Do you know how beautiful it is to be able to consult with someone?

If I could tell my husband, the stepparent in our family, one thing (or a few things) this Christmas season, I’d tell you thank you for sharing our joy, and thank you for drying my tears. Thank you for always being patient, without complaint. Thanks for loving us in the good times, and the not-so-good times. You truly complete us.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness during the holidays. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Today I was in the checkout line at a Kroger grocery store, and there was a pregnant lady in line ahead of me. She and the cashier were making friendly small talk about her due date and her toddler at home. When the cashier looked over and saw me and my daughter, she said something along the lines of, “Oh, look! There’s another sweet little one.” As she did, the pregnant lady, all smiles, turned to look at my daughter. The second her eyes locked on my daughter’s face, her smile vanished. In place of the smile was a raw, reactionary look of fear and pity and sadness. The friendly conversation abruptly ended, and she turned away. She said nothing else as she finished loading up and walked out the door.

I know this lady wasn’t trying to be mean. I know her immediate reaction wasn’t voluntary, and I might’ve done the same five months ago. I know it can be impossible to know the right thing to say or do in situations you don’t have any experience with. I get it. I really get it. I also knew these things were going to happen and have dreaded them, but this was my first experience with it.

Rather than letting it ruin my day, I want to use this experience to say a few things to hopefully help eliminate some of these situations in the future.

If you are ever put in this type of situation, please don’t look at that new special needs mom with pity or sadness and turn away. Please realize that mom — and, more than likely, a whole lot of other people — love and value that child just as much as any other child. Be kind.

With all of the doctors’ appointments, therapies, the shock of the diagnosis and added worries that come with being a special needs parent, this mom has been through a lot. She will appreciate a kind word and the normalcy of your conversation.

While you might look at the child and just see Down syndrome, the parent looks at their child and just sees their child. If there’s one thing I long for, it’s for the world to see my daughter for who she is and not what she has. For people to look at her and see a valuable human being. For everyone to realize that, yes, she has a different genetic make-up than most, but she has just as much to offer the world as anyone else.

And as far as the fear thing goes, know this. It is scary. It is so so scary, especially at first. But if you ever have a child with special needs, you will rise to the occasion. You will figure it out.

You will find more joy than you thought imaginable, and you will be so much stronger than you could’ve dreamed. It won’t always be easy, but it will always be worth it.


Follow this journey on I Heard It Thunder.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

On December 7, 2015, A&E premiered “Born This Way,” a reality show focusing on young adults who have Down syndrome. Here is an open letter I wrote to the creators and producers:

Dear A&E,

Thank you.

Thank you for taking me inside the lives of seven people with Down syndrome.

Thank you for showing the struggles of a person with special needs.

Thank you for showing that others with special needs can live normal lives.

Scene from the new A&E reality series, “Born This Way.” Photo by Adam Taylor, courtesy of A&E.
Scene from the new A&E reality series, “Born This Way.” Photo by Adam Taylor, courtesy of A&E.

Thank you for showing that some people with disabilities have a hard time accepting our diagnoses.

Thank you for showing the amazing community people with disabilities have.

Thank you for giving multiple perspectives of what it’s like to live with a disability.

Thank you for showing the reality of what it’s like to grow up with a disability.

Thank you for showing you can be “high-functioning” with a disability.

Thank you for showing the love between someone with a disability and their parents.

Thank you for showing people with disabilities can make friends.

Thank you for showing me people with disabilities can have a job.

Thank you for showing me people with disabilities can have a boyfriend or girlfriend.

Thank you for showing me people with disabilities can get married.

Thank you for breaking the stigma attached to having a disability.

Thank you for being curious enough to go inside the lives of people with disabilities.

Thank you for showing me people with disabilities are not anything to be afraid of.

Thank you for showing all seven people with different personalities.

Thank you for showing the concerns of parents with having a young adult with a disability.

Thank you for giving me hope that I can live a normal life, too.

Thank you for showing me no one is alone when they have a disability.

What you may not know about me is that I have multiple disabilities, and I also serve young adults with disabilities at my church. Your show has given me insight into what it’s like to have Down syndrome. I thank you for that. Also, as a person with a disability it’s nice to see that our culture is becoming more accepting of others who are different from them. This show is everything I would want to others to see about what its like to live with a disability.

Thank you again.

I love your new show and will definitely watch all episodes.

Emily Wachter.1-001

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Did you see the first episode of “Born This Way“? What did you think?

I was delighted that any network would make a show about young adults with Down syndrome. A&E did it, and if the first show is any indication, did it well.

This is a reality show in the truest sense. The joys and fears these young adults own are no different. Their aspirations are typical. Which, of course, is the point. What’s different is, they don’t seem to harbor agendas or deal in guile or jealousy. They’re real people. Nice people. Who you see is who you get. Fantastic.

I was blown away by the collective self-awareness of the group and by their abilities to express themselves. These are all high-functioning people, sure. That doesn’t diminish their insights. Megan, who recently moved from Denver to Los Angeles, wants to be a movie producer. At one point, she and her mother sit on the beach and discuss Megan’s future. Mom is divorced and apparently has raised Megan by herself. On the beach, Megan makes it clear, in a sensitive way, that it is time for her to make her own way. It was a remarkably mature, adult conversation and reminded me of the talks my wife, Kerry, and I had with our daughter, Jillian. The other young people on the show are similarly insightful.

I believe the best thing about “Born This Way” is simply that it’s on the air. Familiarity eases fear. These people are sensitive, smart and funny. Same as most of our kids with disabilities.

This is a national opportunity for folks to see our kids rather than simply look at them. Those who take the time to watch will have their eyes opened.

   Paul Daugherty’s memoir about raising his daughter Jillian is available on Amazon.com and on his website at www.uncomplicated.life.

Lead photo source: YouTube video screenshot

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