Life Support

by | December 2018

illustration from iStock
 

Neighbors helping neighbors is the Adirondack way


Three-year-old
Michael Hart II loves mud puddles, the Power Rangers and playing soccer—things most kids his age embrace. But Michael’s also undergone heart surgery,* has low muscle tone, severe astigmatism in both eyes, hearing loss in both ears and, because of his frustration at not being able to communicate, throws fits so epic, nothing—nothing—soothes him, says his mom, Jessica Smith.

As an infant, Michael was diagnosed with Noonan’s Syndrome, a genetic disorder. Au Sable Forks, where the Hart family lives (Dad, Michael Jr., is an Au Sable Forks volunteer firefighter and a correction officer), is a long way from Noonan specialists at Boston’s Children’s Hospital; trips to and from the hospital are frequent and expensive.

The Harts’ Adirondack community has made all the difference, says Jessica. “It’s just amazing to me—mind-blowing, actually—that in such a small community everyone comes together and supports each other.”

Michigan hot-dog suppers and auctions at Au Sable’s American Legion, donation jars on local businesses’ checkout counters, and a fundraising ride by the Adirondack–based Mountain Riders Motorcycle Club have defrayed medical costs and other expenses for a family that’s already juggling the usual stuff, plus a six-year-old with food allergies. GoFundMe—corralling the attention and compassion of a cyber community—has been helpful, too. But actual neighbors, no matter what political signs are staked in their front yards, deliver simple kindnesses, from smiles around town to friendly check-ins at the post office. Jessica, who is originally from the Albany area, says it’s the Adirondack way. “If you were to break down on the side of the road [where I grew up], you’ll be lucky if one person stops. If you break down here, three people will stop to see if they can help.”

I know what Jessica means. When my son was diagnosed with a serious medical condition almost eight years ago, I felt that support. It came in the form of friends leaving meals and thoughtful messages, and still, today, the way they marvel at how my kid’s thriving. Encouragement from my faraway friends and family was—and continues to be—a constant, but there’s something to be said for face-to-face encounters, for real-time uplift when you’re feeling ragged and defeated.

Living in the Adirondacks brings additional challenges. Hospitals that can handle specialized medicine are well beyond the Blue Line. Health insurance, if you’re lucky enough to have it, only covers so much. In such an economically depressed region, it’s difficult to make a living, let alone deal with the expenses that come with a kid who needs special care.

Sid Ward, who for years ran Ward Lumber, in Jay, also gets it. “We’re a poor area,” he says. “It’s a great place to live, but a tough place to make a living.” Because, says the 76-year-old, he and his family “have been very blessed, worked very hard, and benefited from the area and living here,” he’s dedicated his retirement to helping everyone he can. In 17 years, Sid has made some 10,000 wooden cutting boards, selling them at farmers’ markets, in libraries and other locations, giving 100 percent of the proceeds to organizations like North Country SPCA, the Jay Volunteer Fire Department, North Country Life Flight, Champlain Area Trails, Keene Valley Congregational Church, Holy Name Parish in Au Sable, Wilmington’s Methodist Church, the Wells Memorial Library in Upper Jay, and the list goes on. These places serve and enhance the lives of those who call this place home.

Sid puts in six to eight hours a day, seven days a week. “It gives me something to get up in the morning for,” he says. 

It’s not unusual to gift someone a Sid-made cutting board, only to realize they’re gifting you one, too. (I have a half-dozen.) We pay it forward, says Jessica Smith. “These businesses that give and give and give … if you donate I’m going to make sure that if I need what you have, I’m going to you first to buy it. It comes around.”

As Michael heals from his latest heart surgery, he faces a long, hard road ahead. When he rides his Fisher-Price Power Wheels the Mountain Riders gave him with their motorcycle club sticker on the back, “He goes flying and he opens his mouth so wide, smiling,” says Jessica. “Giving him that was so … just really, so kind.”

I’m constantly reminded that you can’t choose what life brings, but you can choose where to live it.    

*Editor’s Note: The online version of this article has been corrected to reflect that Michael Hart II had one heart surgery—not two, as the print version stated.


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