By William Smith
Burlington Beacon
Dylan Diewold, his wife Lauren Blackburn, and their 2-year-old son Dax Diewold moved to Burlington a few months ago.
On March 21, World Down Syndrome Day, the couple raised $3,000 for local special needs charities. Being new in town, they were floored by the amount of local support.
“We are super thankful for everyone who showed up,” Blackburn said.
Meet Dax
Their son Dax — an endless ball of eager energy, joy, and love — was born with Down Syndrome. Thanks to modern technology, they knew Dax would have Down Syndrome while he was still in the womb.
They were ready for the complications that would follow.
“It was a high-risk pregnancy because of his medical conditions, so her health was a big question mark as well,” Dylan said. “We just did our best to dive in and learn as much as possible.”
Dylan and Lauren found out she was pregnant six weeks before their destination wedding in Maine — a wedding they had previously postponed because of the COVID-19 pandemic. After planning a wedding, they started planning a high-risk pregnancy.
“We were in a boardroom with seven medical professionals, so we had everything lined up for him to be born,” Dylan said.
The complications were many and immediate. Doctors told the couple that Dax would need bowel surgery immediately after birth. After about a year, he would need heart surgery.
Lauren contracted COVID-19 during the pregnancy and found out about Dax’s Down Syndrome diagnosis the next month. The month after that, they found out Dax would have heart complications. The stakes were rising exponentially.
“It was starting to look like he might not make it after he was born,” Dylan said.
A Strong Marriage
Dylan and Lauren, who were living in Chicago at the time, dispersed the stress between them, leaning into each other emotionally. They had no family close, but they had each other — and that was enough.
Lauren was admitted to the hospital for complications ahead of the birth, and her water broke while she was still in the hospital.
Mother and son spent the first six weeks of Dax’s life in separate hospitals connected by a skybridge. As soon as they were released, they had to move into a new, more baby-friendly apartment.
“Luckily, I worked remotely, so I could work from his room. It was a little bit of an un-traditional start to parenthood,” Dylan said.
The day after they moved into their new apartment, Lauren was laid off from her job. Both of them work as private contractors in the marketing world.
But they kept moving forward — doing things they would have never thought possible a few months earlier.
“We had to learn how to put a feeding tube down his nose into his stomach and listen with a stethoscope for air to make sure we got it in his stomach,” Lauren said. “It was pretty overwhelming.”
Those with Down Syndrome have weaker immune systems, and the couple was in and out of the hospital with Dax regularly.
Since both worked from home, juggling meetings, doctor appointments, baby bottles, and nap times became a never-ending routine. It felt like they had been holding their breath, waiting for normalcy.
A Home for Dax
Lauren breathed easier the day Dax started eating on his own. He had jerked out his feeding tube several times, and doctors approved the move.
“He just crushed it!” Lauren said, looking down at Dax with pride.
Now Dax can’t stay still. He’s always trying to run to another adventure, greeting strangers as if they were lifelong friends.
He’s also quite communicative, using his hand to form sign language – a skill his mother taught him.
“We really don’t feel like there’s limitations to what he can do,” Lauren said. “It takes him a little bit longer than neurotypical kids to do some things. But he gets it. He crushes his goals. He’s a determined guy, and he’s really fun and full of personality I feel like he’s a great communicator, too.”
Though he hasn’t lived in Burlington until recently, Dax has found his home. Dylan grew up in Burlington and graduated from Notre Dame High School, acting as a tour guide for his new family. Lauren grew up in a Maine town smaller than Burlington, and both have spent the past decade living in Chicago.
It’s Burlington where they plan to lay down the roots that will support Dax — in whatever he wants to do.
The World Down Syndrome Day fundraiser they held last week is now a new Burlington tradition.
“This was the first year of hopefully many,” Dylan said.