Lutherans in the Twin Cities

When life turns scary, church friends step in

Apple Valley congregation surrounds a struggling member family with love.

The lives of Heidi and Paul Ness and their three children, Adam, Hannah and Caitlin, have been turned upside down by illness and economic setbacks.

Heidi, 40, has amyotrophic lateral sclerosis, the degenerative, terminal illness commonly known as Lou Gehrig’s disease. Han-nah has cystic fibrosis, as well as asthma and allergies. Paul, 40, has been unable to find work as a human resources consultant and so has taken a job as a delivery route driver.

Grace Lutheran Church in Apple Valley, Minnesota, responded by giving generously of their time and treasure. Donations from the members helped the family purchase a specially-equipped van for $30,000. Members helped raise funds to build a wheelchair-accessible addition to the family’s Rosemount home, thus far raising all but $5,000 of the estimated $130,000 needed.

But while the dollar amount is impressive, it’s the countless volunteer hours by an untold number of people that sets this effort apart from mere philanthropy. The support has been overwhelming. It’s been a challenge to “receive in a gracious way,” Heidi said.

“Receiving help from others is an act of faith,” Paul said. And receive they have. Neighbors have provided dinner five nights a week for the last three years. Others have ferried children or run errands. Heidi’s family opened their home to them for seven weeks during remodeling.

Fund-raising efforts have ranged from selling lemonade and handmade cards to serving spaghetti to 850 people. The dinner, combined with a silent auction, netted $38,000, thanks in part to autographed items donated by CNN television personalities. Donations have come from all across the United States, as well as France and Norway.
Many of the contractors and suppliers involved in building the addition discounted their bills, as well as donated materials and labor.

On an overcast au-tumn afternoon, the members of the Ness family are engaged as might be any family. Paul guides his daughters in folding laundry, having to direct them back to the task more than once. There’s Hannah, 10, whose wavy, honey-colored hair brings to mind vintage angel illustrations. Beside her is Caitlin, 7, climbing into Mom’s lap or dumping a box of toys at her feet, clearly wanting to be in on the action. In the room only occasionally is Adam, 12, who waits with extraordinary patience for his mother to help him with a homework assignment.

Amidst these normal surroundings is Heidi, whose wheelchair and slightly curled-up hands are the only things that keep this from looking like the usual suburban household. She tells her story freely, putting to rest the listener’s fears of what to say to a person with a terminal illness.

The optimism and gratitude she expresses are not as surprising as the tears. While she says she was in denial and “pulled into myself” the first year or two after the diagnosis, she is clearly mindful of the honor rolls, the first dates, the graduations and other milestones in her children’s lives she will most likely miss. That she cries openly in front of others suggests that, to a great extent, she’s come to accept her circumstances. Still, “I don’t always feel so damn gracious inside,” she says.

The first sign that something was amiss came a little more than five years ago when Heidi fell off a chair trying to reach something. In time, she began to experience other occurrences of leg weakness. Doctors first thought it was multiple sclerosis, which, while serious, is not terminal. But a Mayo doctor diagnosed it as ALS in December 2001.

Another blow, which Heidi described as faith challenging, followed shortly thereafter. Hannah, then nearly seven, was diagnosed with cystic fibrosis (CF). It’s a life-threatening disease causing the buildup of mucus that can clog the lungs and pancreas, making breathing and digesting food difficult. (Her parents take great comfort in the fact that, thanks in part to medication and twice-daily respiratory therapy, Hannah’s CF seems to be under control — and it may not reduce her life expectancy.)

That same year, John Matthews became senior pastor of the Ness’s congregation, Grace Lutheran Church of Apple Valley. His wife, Patty, heard of the family’s hardships and decided to get better acquainted with Heidi at family camp the following summer.

“We really hit it off,”Patty said. “I was really taken with her — her courage and her attitude.” Just how taken is evident when you see the handicap-equipped van in the garage or the wheelchair-friendly addition at the Ness home.
From that first conversation grew a friendship that inspired Patty to raise funds to purchase the van. Next she formed a committee for the “Hearts Helping Heidi” project, the fruits of which were evident in a recent open house. One could barely see the glossy hardwood floors or fresh paint, for all the people in attendance. The new, open-floor plan is accessible as well as fashionable. A long work surface with a wheelchair-ready peninsula and stools provides a place for Heidi to supervise homework or do crafts with the children. A new first-floor master bedroom with an open-shelved, “roll in” closet means Heidi can access her clothes. And a spacious, barrier-free shower makes bathing easier.

The open house was a high point — though not the end point — of the project. Donations continue to come in while Patty is organizing a “share the care” team to step in when Heidi needs more help.

It’s a grim reminder that a dying woman sits at the center of this outpouring of love. People from all walks of life have formed a cadre to do those things her body now stubbornly refuses to do. There will come a time when Heidi and her helpers reach their limits — when no number of volunteers, cas-seroles or dollars can replace the graceful, grateful woman at the heart of this courageous family. But those who have become Heidi’s arms and legs seem determined to help the Nesses make the most of every breath that remains.

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You can read more about the Ness family and the Hearts Helping Heidi project at www. glcofav.org/ness.