A place for Heather to call home

Jon Avise South Washington County Bulletin
Published Wednesday, March 12, 2008

Don’t even bother looking for signs of self-pity at the Peterson household in Cottage Grove. Might as well give up now.

Though they’re a family with more than a few reasons to feel a little sorry for themselves, it’s absent.

Jeff and Chris Peterson’s youngest daughter, 15-year-old Heather, was born with a rare genetic anomaly — as in three people in the world rare — that has led to physical, cognitive and developmental challenges.

Heather lives with a disorder so scarce there isn’t even a name for it, her mom Chris says. She’s got a medical history that reads like a novel, pages and pages long, one that chronicles open heart surgery, countless corrective leg surgeries, even a bout with ovarian cancer that’s five years in remission.

But Sunday, Heather and older sister Ali, a Park High School junior, headed to the bowling alley to knock down a few pins, and mom and dad stared down the same worries facing any parent with a child itching for a little independence, ready to fly the coop and live on their own.

It has been an “extremely painful and long process” seeing their nearly 16-year-old daughter reach the precipice of that teenage milestone, but, really, there’s no place for pity, they say.

“You only have one way to go,” Jeff Peterson said, “and it’s up.”

And also, they hope, out.

The Petersons have kicked off a fundraising campaign for a project they call Heather’s House, an effort to start a small, privately-run independent living home for kids like Heather — kids Jeff Peterson says have the same need for freedom and the same craving to be part of their community as any.

“She’s no different that you or I,” he said. “For everyone, independence is a huge, huge deal. Getting out is important.”

The challenge, Jeff and Chris say, is finding a place for Heather that’s “safe, but stimulating.”

What they saw from county-run developmental disability living — group homes — didn’t interest them, though. To the Petersons, it seemed to be an undertaking hamstrung by dollars and cents, and one that faced a stigma in the neighborhoods where they existed.

So, with two years left before Heather hits 18, the Petersons have set into motion plans to purchase a house in a semi-rural setting, a future home to perhaps four or five young adults with mild mental disabilities.

To keep costs down, Jeff and Chris said they’ll likely live on-site initially in lieu of a paid staff person. It’s an effort to keep the venture affordable, not only for them but also the house’s other prospective residents.

“It’s unfortunate, really, a lot of these kids come from broken homes,” Jeff said.

The objective is to give the young adults a safe, tight-knit and interactive place to call home, but the aim isn’t cheap — property and other start-up costs will easily be half-a-million dollars, Jeff says, even in a slow housing market more favorable to home buyers than years past.

To close the gap in cash between funds the Petersons already have set aside for Heather’s future care and the needed seed money, the family has started selling “Heather’s Helpers” buttons for $2.50, an effort to get a community they say has always been helpful involved in the process.

And with the number of people who know Heather’s often-smiling face, her mother Chris doesn’t think it should be too hard.

“You can’t go anywhere in town without her knowing somebody,” Heather’s mom said. “We go to Target or Cub and there’s always someone who wants to say ‘hi’ or give her a hug.”

Heather’s House is a remarkable goal, meant to help a girl who has faced some remarkable problems. But Heather and her family have shown they are, if anything, resilient. And all the medical battles, the Petersons said, have instilled in them some extraordinary lessons.

“It’s taught us to look outside what people consider the norm and realize how lucky you are,” her dad says. “If you’re just healthy, that’s a huge, huge deal. And the question is, who’s teaching who?”