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‘It was never never’

SUNDAY, MAY 11, 2014

When 6-year-old Eden Nagle’s parents learned she had a rare genetic condition, they faced a world of unknowns, including whether she’d walk. Their video about the moment she did has gone viral.

For many parents, the moments when a child reaches another milestone of development are notable but inevitable. For Michelle and Tim Nagle, those moments were massive. And until they happened – until their daughter Eden finally crawled at 2, walked on her own at 4 1/2 – the Coeur d’Alene parents weren’t sure they would.

Whether Eden, now 6, would walk was just one unknown in a world of them after they learned she had a rare genetic condition. To share their joy in their daughter’s progress was one reason Michelle made a video documenting Eden’s milestones. Another was to offer encouragement to other people facing their own hurdles.

But Michelle didn’t expect Eden to go viral.

She posted “Don’t Give Up” in March on Vimeo, a video-sharing site, where it’s been viewed nearly 750,000 times. The Huffington Post shared it in April, and Yahoo Shine and the U.K.’s Daily Mail downloaded the video and posted it on their own sites.

Producers have been calling. A crew working for RTL Television, Germany’s largest private broadcaster, will go to Eden’s Post Falls preschool Monday to film her for a segment to air on its morning show.

And Michelle, 32, a photographer who runs her own business, has received emails from parents all over the world whose own children have gene deletions, thanking her for the dose of encouragement.

She was a bit taken aback when it started gaining so much attention. But the responses have been kind.

And the couple feel good about the video’s message of encouragement.

“I think people like that cathartic joy cry,” said Tim Nagle, 36, a worship leader at Real Life Ministries in Post Falls.

The video combines still photos and video of Eden: grinning and chubby in babyhood, blond and chubby when she starts to crawl at 2, then her ponytail bobbing as she pulls her walker behind her, then her tongue poking out as she takes her first steps walker-free.

“We hope Eden can encourage you,” reads text at the end, “that whatever your struggle might be, keep going, smile, you are loved, you are not alone, don’t give up.”

They showed the video to Eden.

“I’ve explained it: ‘You crawled for the first time, and we were so excited. And you walked for the first time, and you didn’t give up,’ ” Michelle said. “Now I’ll say to her: ‘What do we say to people who are having a tough time?’ She says, ‘You can do it. Don’t give up.’ ”

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Eden has a deletion in her first chromosone, a rare condition that has no name.

Unlike other 6-month-old babies, she wasn’t sitting or holding up her head or showing interest in toys. While friends’ babies would bounce on strong legs on parents’ laps, Eden was “squishy,” Michelle said.

Their pediatrician sent them to Idaho’s Infant Toddler Program, a system of early intervention services for newborns to 3-year-olds with developmental delays. Genetic testing in Spokane found the deletion.

They learned the deletion probably caused her low muscle tone and might cause developmental delays. But what it meant exactly, no one could say.

Nobody said she’d never walk.

“It was never never,” Michelle said. “It was just all unknown.”

They decided to get her into therapy and see where they went.

“We decided if she never walked, that was OK. The most important thing was that she was happy and loved,” reads a frame of text on the video.

But Michelle remembers an early conversation with Tim.

“ ‘I guess she’s not going to go to a normal school?’ ” they said to each other tentatively, she said. “We just didn’t know. When you’re in the unknown, when you’ve got this baby that’s just hanging out, we never predicted she’d be here. So you’re like, ‘Gosh, I guess we’re going to do stuff different than we thought. I guess we’re never going to have a normal kid.’ ”

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The unknown is not uncommon among young children with developmental delays, said Cathy Kowalski, who owns the Learning Garden Developmental Preschool in Post Falls, where Eden goes five days a week.

Eden was 3 when she started at the Learning Garden in fall 2011. She was mostly crawling but learning to use a walker. She had other motor delays. While a typical 3-year-old can use tongs to pick up a pompom and move it from one bowl to another, for example, Eden couldn’t squeeze the tongs.

Now she’s running and dancing. She recently mastered jumping.

Eden and her teachers and therapists are working to improve her balance. They’re working on her social skills. Eden misses the cues made by other kids, for example, as play evolves and they move from playing house to playing store. She’ll still be focused on playing house.

“When we’re working on things, she’ll tell me it’s hard,” Kowalski said. “All I have to do is tell her, ‘I know it’s hard, but I think you can do it.’ And she tries every time.”

Kowalski attributed Eden’s motivation to her temperament, but also to her parents’ influence.

“They appreciate and love Eden where she’s at, every stage in her life,” she said. “I’ve never heard them say, when we’re sitting down planning goals to work on or projecting ahead what we want to help Eden with, never had I heard them say, ‘Oh, I just wish she could do this. She should be doing this.’ Never negativity. They’re very upbeat at the progress she’s making now, and wanting to make sure that whatever we worked on was something she was ready for.”

Eden also has trouble with daily tasks such as zipping zippers and taking off her shirt, and she has some trouble expressing ideas. She loves the movie “Frozen,” but she’d have a hard time telling you what it’s about.

But she’s in speech therapy, physical therapy and occupational therapy. The gap between Eden and other kids her age seems to be shrinking, Michelle said, and no one’s placed any limits on what she can do.

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Michelle’s video focuses on Eden’s transition from crawling – she started as a 2-year-old on Christmas Day – to walking with a walker to walking on her own. Michelle said she focused on that aspect of Eden’s progress because it’s the most visual, but also the most exciting for her parents.

The family was at Tim’s mother’s house when Eden took her first steps at 4  1/2. She walked a few feet, “like a 1-year-old doing its first steps,” Michelle said. “And we were both like, ‘What? Did that just happen?’ We looked at each other like, ‘Did you see that?’ ”

The next day Eden took a dozen steps at Tim’s work, across a wooden floor, from her mother’s arms to her father’s. That moment, filmed by Tim’s co-worker, is in the video.

Maybe she would run around in the yard. Maybe she would play with other kids in the grass. Maybe she would walk from the car to the front door of the house.

Carey Mack, Eden’s physical therapist since she was 6 months old, said her heart starts beating faster when parents ask her when or if their children will walk.

It was the same when Michelle asked. Mack recalled giving her standard answer: She didn’t want to put a number on it, because she’d be inevitably wrong.

“Of course, with a rare genetic deletion or addition, we never know what a child’s going to be able to do,” Mack said.

With Eden, she said, she figured she’d walk, but she worried about her weakness and instability.

Then she said: “She is so strong – she’ll try anything that I ask her to try. It was always disheartening for me when we’d try something and she would fall. But she would get right back up and I’d say, ‘Can we try it again?’ and she’d say ‘Yes.’ I can push her, which is not the same with all kids. In the back of my mind, I was hoping, hoping she was going to be able to do it.”

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Eden’s bedroom is outfitted with Winnie the Pooh decals on the walls and bins of toys and a new big bed her grandfather gave her for her sixth birthday.

One day last week, she opened a book and said, “Tell me what the words say.”

She pulled toy after toy from a set of bins.

“I’m a little messy in here,” she said.

She said her whole name is Eden Grace Nagle.

“We lost our first kiddo,” Michelle said.

The Nagles named their first daughter Lyla Grace. She lived 23 minutes. Lyla was born in 2007, and Eden was born in 2008.

“We named her Eden Grace after big sister,” Michelle said.

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It is well.

With my soul.

The six words together are the title of a hymn, written in the 1870s by a man who’d lost his son, then his money, then his four daughters.

On Michelle and Tim Nagle’s living room wall, they’re three words each on two posters – made by a friend – that hang side by side. It is well with my soul.

They were the words sung softly by their family and nurse and doctor in the delivery room during their first daughter’s birth. Lyla Grace had a birth defect called anencephaly, in which the baby is born without parts of the brain and skull.

Michelle wrote about Lyla in an essay published recently on the website The Mighty. “We have a 6-year-old daughter, Eden, who is the treasure of my heart,” she wrote. “I truly believe I love her in an even deeper way because of my sweet Lyla.”

The Nagles learned about Lyla’s condition at her 20-week ultrasound. But while their first baby’s condition had a name and doctors knew for sure she wouldn’t survive long, whether she’d live at all after she was born was unknown. Michelle decided to carry her to term in hopes that she would.

They sang while she labored and hoped that Lyla would be born alive, so Michelle and Tim could say hello and feel her heart beat.

Michelle talked about it in her living room, sitting on her couch.

“Our kid passed away. It’s all right. It’s well with my soul. Our kid might not walk – we don’t know. You know how there’s some lyrics or a poem or something that you’re like –”

Eden popped into the room. “Hi!” she said.

“Hi, Bubby,” said Michelle. “How are you?”

“Good!” said Eden.



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