A Heartbreaking Loss Inspired This Photo Series of Kids With Down Syndrome

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Photographer Julie Willson has wanted to do a portrait series of children with Down syndrome ever since her sister Dina passed away four years ago.

Dina had Down syndrome; she died from heart failure at the age of 35. Doctors didn’t expect her to live past the age of 7, and Willson wrote on her blog that the uncertainty about Dina’s life was a “literal roller coaster for my parents.”

Julie Willlson and her husband on their wedding day with her sister, Dina. Dina sang at the ceremony.
Julie Willlson and her husband on their wedding day with her sister, Dina. Dina sang at the ceremony.

On Oct. 11, Willson used her photography idea to honor her sister’s life.

Willson, who also teaches kindergarten full-time in Egg Harbor Township, New Jersey, first put out a casting call on Facebook. She told local news site Shore News Today that the response overwhelmed her. Willson teamed up with 11 families for the shoot, and she wrote on her blog that the memories of her sister came flooding back, as well as some tears.

“Some of the kids were happy as ever, some overwhelmed, some naughty and some stubborn,” she wrote. “These are all the adjectives that I think of when I think of my sister… There were a few times that I looked over to see my mom with tears in her eyes and a smile on her face as she reminisced of my sister being that small.”

Girl wearing white dress sitting on chair outside
Photo courtesy of Julie Willson / JuleD Photography
Baby wearing bow tie and suspenders sitting in chair outside
Photo courtesy of Julie Willson / JuleD Photography

Willson says Dina was her hero.

“Dina completely inspired my photo shoot,” Willson told The Mighty in an email. “Because of her and because of the joy she brought to my life, I thought doing the photo shoot for Down syndrome awareness month would bring me the same joy. But in all honesty, this shoot was more amazing than I could have ever dreamed.”

Children with Down syndrome sitting on blanket in a park
Photo courtesy of Julie Willson / JuleD Photography
Baby wearing bow tie and suspenders sitting on a chair in a park
Photo courtesy of Julie Willson / JuleD Photography

Girl wearing white dress sitting in a chair in a park

Willson didn’t cry at the shoot, but she admitted that she’s cried every day since. She knows Dina would love the photo series, and she’s certainly thought about how her sister might have reacted to the photos if she was still alive.

“She would have been sitting here with the biggest smile on her face and giggling non stop,” Willson told The Mighty. “As I’m writing this, I can actually hear her giggle and the picture of her in my head could not be any more clear… She would have been so proud of me.”

Baby with a bow sitting in chair in a park
Photo courtesy of Julie Willson / JuleD Photography
Boy sitting in chair in a park
Photo courtesy of Julie Willson / JuleD Photography
Girl sitting in chair in a park
Photo courtesy of Julie Willson / JuleD Photography
Boy sitting on a chair in a park
Photo courtesy of Julie Willson / JuleD Photography
Baby girl sitting on a chair in a park
Photo courtesy of Julie Willson / JuleD Photography
Baby wearing bow tie and suspenders sitting on a chair in a park
Photo courtesy of Julie Willson / JuleD Photography

For more of Julie Willson’s photography, be sure to check out her Facebook page.

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Amazing News for Baby Whose Heartbreaking Photo Shoot Touched the World

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Abigail Jones
Image courtesy of Abigail’s Joy / Facebook

In September, Erika and Stephen Jones shared a beautiful and heartbreaking portrait series of their daughter Abigail, who has Down syndrome and had been diagnosed in utero with a fatal brain tumor. Abigail was not expected to live, so rather than keeping her in the hospital, the family brought her home and waited for her to peacefully pass away. Though Abigail’s tumor was never classified as “inoperable,” doctors originally told the family surgery or chemo could potentially kill Abigail.

“If [Abigail] dies, I don’t want it to be in plastic box in a hospital NICU,” Erika Jones told ABC News at the time. “It will be home with us, surrounded by love and in our arms.”

Their story and photo series soon went viral.

However, as Abigail grew, her parents noticed that she was surprisingly responsive. At the 6-week mark, another MRI showed reduced pressure on Abigail’s brain, Jones revealed on the family’s “Team Jones” blog. They sent the scans to the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and asked for a second opinion.

Dr. Alan Cohen, neurosurgeon-in-chief at Boston Children’s, gave the family some incredible news.

I reviewed the MRI and thought the tumor actually might not be malignant,” Cohen told Thriving, the Boston Children’s Hospital’s Pediatric Health blog. “I spoke to Mom on the phone and told her that I thought there was enough question about the diagnosis that we should not give Abigail a death sentence.”

Abigail Jones and her family in the hospital
Image courtesy of Abigail’s Joy / Facebook

The Jones family traveled to Boston, and after another MRI, Abigail underwent surgery to remove the tumor. Further tests revealed the mass was benign, and Cohen said he does not believe the tumor will return. “Her prognosis is excellent,” Cohen told Thriving. “This is a story with a very sad beginning and a very happy ending.”

On Oct. 12, the Jones family wrote on their Facebook page that they were leaving the hospital, and after a follow-up MRI on Oct. 15, they will be headed back to Florida.

mother kissing young baby on the forehead
Image courtesy of Abigail’s Joy / Facebook

“Such an incredible, surreal feeling walking out of the hospital with Abigail,” the ecstatic parents wrote. “Bottling that up and carrying it with me forever.” They also thanked the Boston Children’s Hospital and added, “It has changed our lives forever. We are eternally grateful.”

To view the Jones family’s viral photo series, head here.

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Why I Feel Conflicted About Down Syndrome Awareness Month

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It’s already October, and my world is flooded with information about Down Syndrome Awareness Month. A whole entire month for me to help you be aware of Down syndrome? Wow.

Kate Taylor.2-001

I’m conflicted. What exactly should you be aware of? I could post some cute pictures of adorable little babies. But people with Down syndrome aren’t babies forever. And no adult is ever as cute as a new little baby. I could post an article about a young adult with Down syndrome who was voted the homecoming queen or who was allowed to run with the ball for a touchdown. Then we can all pat ourselves on the back for our magnanimous efforts. 

I could scold you for your choice of words to describe people and remind you to “spread the word to end the word.” (In case you were wondering, it’s the R-word.)

I can wear colorful mismatched socks to draw attention, although I’m still not sure why.

We can even raise money for our choice of Buddy Walks all over the country. And while I fully support raising money for local Down syndrome organizations, my daughter, Ellie, is not growing up to be your “buddy.” And while it’s cute when you’re 3, I have a hard time with terminology that implies people with Down syndrome are just cute little kids. Kids eventually turn into adults who need to be respected and given opportunities.

So I guess I’m not there. I don’t want a whole month, and I don’t want to be limited to a month, either.

I don’t want Ellie to be your inspiration because she has Down syndrome. I want her to be your inspiration because she is Ellie. And she is flourishing in who she was meant to be.

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parents hugging four young daughters

10 Things to Say When a Baby With Down Syndrome Is Born

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When I wrote “10 Things Not to Say to a Parent of a Child With Down Syndrome,” someone emailed me a day or two later.

“My father and I were talking about your post about 10 things not to say to a parent of a child with Down syndrome, and we were wondering … What should we say?  … Please, help us. We really want to know.”

I was touched by this person’s desire to learn about such a delicate subject.

I’ve given this some thought. I know every parent is different, so not all of these on my list will resonate with everyone.

Here’s my list of 10 things to say to when a baby with Down syndrome is born.

1. How are you doing?

After my daughter Polly’s birth and diagnosis of Down syndrome, I appreciated friends and family asking how I was doing. I realize not everyone would want to talk about their feelings, but it meant a lot to me when people reached out and “went there.”

2. He/she has your eyes/nose/hair etc…

One of the things I worried about after Polly’s birth was that she wouldn’t look like the rest of our family. Of course, she does. Sure, it’s noticeable that Polly has Down syndrome. Her eyes are almond-shaped. Her nose is a bit flat. But she also has blonde hair like her sisters. She has my smile.

At first, I just wanted to know that although she had Down syndrome, she was my baby.

3. How’s her health?

Most people are aware that an extra chromosome on the 21st pair brings with it added medical concerns. I was fine when people asked about Polly’s health. It provided common ground, something to talk about during awkward pauses. And of course, friends and family asked so that they could pray for her health.

4. You are going to be a great parent.

I needed to hear these words. I was afraid. Down syndrome was new. I would have loved the reassurance.

5. We brought the baby a present.

Our daughter was sick right after her birth for three weeks. We went from having a baby to having a sick child. Polly didn’t get gifts, and we didn’t get cards with hearty congratulations on the birth of our child.

If you are going to see a family after their baby is born with Down syndrome, bring a cute outfit, or balloons, or a stuffed animal. In other words, celebrate new life.

6. I am bringing you a meal Tuesday at 6 o’clock.

Offer practical help. And don’t say, “What can I do?” or “Let me know if I can help.” Parents are too out of it to ask. Just tell them you are bringing a meal. And be specific. Give the day and the time. The parent will check it off her list. Being concrete will put her mind at ease.

7. Can I hold him/her?

Pay attention to the new baby. Hold him. Cuddle him. Love on him. Pray for him. Your tangible, bodily acceptance will have a great, positive effect on the family.

8. We’d like to take the other kids out to a movie on Saturday and then have them over for pizza.

Once again, tangible help. If there are other children in the family, chances are they are getting lost in the shuffle. Schedule a time to take the kids out to do something fun. Again, tell the parents when, where and for how long.

Another tip: take them for a full afternoon or for the day. Parents need time together and with the baby, and they need to know their other kids are attended to.

9. You make beautiful children.

I always say this to a new parent, and I always get a huge smile in return. Parents crave assurance that they did well, because trust me, in the beginning they might not be sure when Down syndrome is in the picture. Compliment the baby. Fuss over her. And compliment the parents on a job well done.

10. Congratulations on the birth of your baby!

I don’t recall getting congratulated. Those first days are squiggly in my mind, but oh how I’d love a story to pop up of someone embracing me and congratulating me on this new little life I produced with what I believe was God’s help.

Make a big deal over the baby. It’s a baby! And she/he and the parents deserve all the love, attention and excitement that comes with new life.

Gillian's family sitting on the grass in a park

Parents, what would you add?

Follow this journey on Gillian Marchenko’s site. Read about her memoir, “Sun Shine Down,” here.

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Why I Want to Warn the Woman Who Took This Photo

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When tragedy strikes, I always think of those seemingly normal moments just before. How the person has no idea how the next few minutes are about to change their life forever.

The picture that brought it all back

This week, Facebook reminded me of those quiet moments in my life a year ago. It was a simple picture: my husband with our baby daughter on an air mattress in our new home in New Mexico. We were so miserable those first few days in Alamogordo. Being an inexperienced military couple, we cried when we drove into our new town. We let the dust and one too many fast food restaurants cloud our vision. We thought the dark and smelly rooms in TLF (temporary lodging facility) were also to blame. So we waited it out in our new home, on an air mattress, until the movers came.

The view just outside of Alamogordo… yeah, it was not as bad as we made it out to be!

I thought our lives were upside down when I took that picture. I had no idea what was coming.

A week after settling in, I couldn’t shake the feeling that something was off. I still remember everything about August 27, 2014.

I remember I skipped breakfast, which I never do. I remember joking around with the nurse as she asked us a host of ridiculous questions because I was a new patient. I remember the ultrasound tech asking us if we were ready to know the sex, and when she said, “It’s a boy,” my husband cried. I remember the nurse coming in after, “Oh, everything must be fine because the doctor would be in here if something were wrong.” I remember him walking in seconds later. I remember him telling us that the slightly enlarged nuchal fold was consistent with Down syndrome. I remember my whole body feeling like it was on fire. I remember thinking, “No, I can’t be a special needs mom. No, I’m not cut out for that. The odds are one in thousands, you’re being ridiculous.”

Even though I know the ending of this story, even though I know it is a happy one, it doesn’t change the very real pain I felt that day. It doesn’t take away the unthinkable things I thought.

I thought August 27, 2014 and the days that followed would be the great tragedy of my life. I was wrong. Look at him. I was so wrong.

baby smiling while lying down with a knit blanket

Our son having Down syndrome is not a tragedy, but it doesn’t take away the fact that we thought it was. The pictures of the days before my son Anderson’s 20-week ultrasound still take my breath away. It’s not him and it’s not Down syndrome that make looking back on that time painful. It was our ignorance and the overwhelming fear of the unknown.

Because of doctors, therapists and the advocates who have gone before us, the world is becoming a much better place for people like our son. But there is more work to be done. Until schools start treating all children equally, people with Down syndrome won’t be viewed as equals. And parents receiving a Down syndrome diagnosis will grieve because they will think the extra 21st chromosome has stolen their child’s life away.

I want to jump through this picture and warn the photographer of what’s coming. I want to spare her some grief. But I would tell her this: you are about to receive some news, it will hurt for a while, but it will get better because you will educate yourself. And once he’s here, you will realize both your son and his diagnosis are extraordinary gifts. If you let it, your life will become bigger than you ever dreamed it could be.

A year from now, you will no longer be filled with grief. Instead, you will be overflowing with hope.

One year later…

Follow this journey on News Anchor to Homemaker.

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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How Hugh Jackman Honored a Fan With Down Syndrome Who Passed Away

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Hugh Jackman found a touching way to honor one of his fans who has passed away.

The actor recently posted a photo on Instagram with the sister of a huge fan of his. Marie Lozano‘s brother, Jeffery, lived in the Philippines and had Down syndrome. He passed away two years ago, but his sister kept his memory alive by giving Jackman one of his drawings of the character Wolverine from the “X-Men” movies.

Screen Shot 2015-09-30 at 8.05.11 AM
Via Instagram

Jackman posted the following on his Instagram, along with the photo.

Today I had the great pleasure of meeting this lovely lady, Marie Lozano from the Philippines. Her brother, Jeffrey, had Down Syndrome. He passed away 2 years ago. Marie shared with me that one of Jeffrey’s joys in life was painting. When he lost the use of his hands he continued to paint with the brush in his mouth. I accept this gift in Jeffrey’s honor. May his spirit live on.

Lozano, a journalist for ABSCBN in the Philippines, was interviewing Jackman about his upcoming film “Pan” when she decided to give him the painting and tell him about her brother, BuzzFeed reported. Her interview with Jackman happened to coincide with the two year anniversary of her brother’s passing. The Wolverine painting was one of the last ones Jeffrey Lozano did.

Screen Shot 2015-09-30 at 8.20.43 AM
Via Instagram

It was fate that I got the assignment to interview Hugh on the day of Jeffrey’s second death anniversary,” Lozano wrote on her Instagram. “I simply wanted him remembered by giving one of his mouth paintings of Wolverine to Wolverine himself. I did not expect that he would be honored throughout the world with this small gesture.”

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Via Instagram

Jeffrey to me is a real life superhero,” Lozano wrote. “He had an unwavering spirit to take on life’s battles. Hugh’s character was an inspiration to my brother and I didn’t expect to inspire the man that inspires millions with Jeffrey’s story. The messages mean a lot to my family and I. Thank you for helping his spirit live on.”

 

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