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These little lights of ours

These little lights of ours

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Sawyer and Gracin web copy

YORK – We’re all born with a light inside.

As children, our lights shine freely until we grow into adults, that light often flickering and encased in a lamp of inhibitions.

Some, however, are lucky, born with a light a bit brighter, ever more constant and without inhibitions.

Gracin Jaekel, an active four-year-old, lounges on the sectional in the Jaekel family’s living room, watching cartoons. Today he is a little shy, but you can still see his light. Suddenly Gracin decides it’s time to go play with his big brother – and best friend – Sawyer.

In his four short years, Gracin has been through more than most adults – heart surgery and bouts with serious infections as a small child, accompanied at that time by news for the Jaekels that they already had an inkling of.

Once Paul and Alisa Jaekel received their son’s diagnosis, Paul called his sister-in-law: Gracin has Down Syndrome.

“I could hear the smile on the other end of the phone,” Paul remembered. “She said, ‘You’ve hit the jackpot. You’ve hit the jackpot of all kids.’”

She knew; her and Paul’s brother’s son Max has Down Syndrome and is just a bit older than Gracin. So what did she mean by “jackpot”?

Paul lifts his hands, breathes in and looks to the ceiling, searching for an answer, because now, years after Gracin’s diagnosis, he Alisa now understand but still can’t verbalize. “We love Sawyer as much as Gracin,” he says. Gracin’s love is a little different, though. “It’s a love that you… it’s hard to explain,” Paul said.

The Jaekels never expected to have a child with Down Syndrome. Max has it, so what are the odds? Still as their tiny boy grew, Alisa started noticing things about her son. “From four to six months he didn’t grow; he wasn’t sitting up – it just seemed like he kind of paused,” Alisa remembered. There was a picture of Gracin that also made Alisa wonder.

“It was Paul’s sister that opened up to me one morning at church – ‘Do you think there could be something? Do you think you should talk to the doctor?”

Memories flood back. So do Alisa’s eyes, Paul rubbing her back as she recalls Gracin’s six-month doctor’s appointment. “We asked the doctor, hey we think he has Down Syndrome. Could we get things started and have him tested?”

“A week after his six-month checkup, he got sick.”

Then began some of the most difficult times of the family’s lives. Gracin was hospitalized, severely ill. In the midst of it all, tests came back confirming what the Jaekels had suspected.

After part of the dark cloud of RSV and a hole in Gracin’s heart dissipated, Paul shared with his sister-in-law Gracin’s diagnosis.

Jackpot.

“But it was terrifying, too, that there were a lot of unknowns,” Paul said.

“It’s definitely taught us not to dwell too much on what could have been, and to wait for what is happening,” Alisa said.

When Gracin became hospitalized, lights began to shine brighter. Words of care and support, and acts of kindness lit up the Jaekel’s world during a time that was a bit darker than others.

They shine still, Paul said. “I love this community. I love it even more because of the support we’ve got with Gracin.”

Lights shone brighter and brighter; recently the Jaekels have teamed up with several other York area families to realize a dream: an all-inclusive playground.

There is a stark difference between an ADA-compliant park and an all-inclusive park. An online search of the technical definition of an ADA-compliant facility results in jargon, laws and technicalities. Paul gives an example: a restroom can be ADA compliant and have room it squeeze in a wheelchair, but what if the person in the wheelchair’s abilities require more space?

All-inclusive parks aren’t reliant on rules and regulations; they are based on making the park not just accessible, but usable, for all ages and abilities. Such is the spirit of the all-inclusive park coming to York’s Mincks Park: Peyton Parker Lane Playground will be a space for all people of all abilities to learn, play and interact with one another, become friends, shining their lights a little brighter – maybe even taking a page from Gracin and Sawyer’s time together.

Council says yes to all-inclusive playground at Mincks Park

Paul marvels at the love of his two boys, often shown in the simplest of ways. “When we come home – and both of our boys do it…”

Alisa knows what Paul wants to say. “He greets you with a hug and a smile. He’s not always happy – that a common misconception, that [children with Down Syndrome] never get upset about anything,” she said.

He can also be a little shy – just like any four-year-old with abilities different from his – but give it time, Paul said. “Once he gets to know you, he’ll run up to you and give you a hug. I think humanity can learn something from him,” Paul said. “He loves people. He will treat you no differently than he wants to be treated.”

Gracin’s unwavering, uninhibited light has sparked many around him, from supporting the playground to less-known acts of love and kindness.

We all have a light. If we open our minds and hearts to individuals with different abilities – including Gracin’s – the lantern can be lifted, our bright lights revealed and the world made a better place.

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