At the age of 8, David Pfohl lost his vision. At the age of 10, he was diagnosed with Batten disease, a rare progressive disease that renders cells incapable of breaking down built-up waste. In 2009, just short of his 21st birthday, David died, having battled the disease for 13 years.

In those 13 years, he received the unwavering love and support from his community and family in Manlius, where his father Warren Pfohl was a pastor. For more than a decade, Warren and his wife Brenda traveled the journey of having a child with functional needs, watching as his body slowly shut down. It was a journey they knew would have loss and heartbreak at its end.

After David passed, the Pfohls realized they had to make a decision.

“We had a choice to either become bitter or better,” Warren said. “We chose not to be bitter and to believe that God could take even the brokenness of your child’s loss of vision and loss of all physical ability, and to turn that around to be something good and beautiful.”

The choice to be better, to press on and to turn their journey into something good and beautiful took the form of David’s Refuge. The Pfohls had built a special wing in their home to care for David. After his death, they converted the wing into a bed-and-breakfast to service parents who had gone through or were going through the process of caring for a child with functional needs or a terminal disease.

 

Courtesy of David’s Refuge

“All around us, we saw parents who had very little, whose marriages were falling apart, whose physical, emotional and spiritual health were crumbling,” Warren said.

David’s Refuge was built to soften that blow and ease that pain — to care for the caregiver, as its mission states.

Every weekend, the Pfohls would host couples at their home, talking to them, connecting with them and letting them know that their journey mattered and that they were loved. It was a weekend of respite and relief for the guests, many of whom hadn’t had a vacation in several years.

In 2011, the year that David’s Refuge opened, 43 couples came through the doors of the Pfohl home. David’s Refuge formed a board of directors, attained legal 501(c)(3) nonprofit status, and began advertising.

Soon, the Pfohls realized opening their home every weekend was a task too exhausting for just the two of them to take on. They decided to expand and partner with existing B&Bs, hotels and inns in the area to serve more couples.

Warren and Brenda wanted to replicate the extravagant love they had received for all the families they were now receiving. They pulled out all the stops to make couples’ stays a truly memorable one. Dinner reservations for two would be booked as soon as the couple set foot in the B&B. A bottle of a wine of their choice would greet them in their room with a welcome note tucked next to it. A host couple would welcome them and be there all weekend to answer any questions and provide any help needed — be it an activity or just a conversation.

“The B&B is the canvas of what we are going to create for this couple,” Warren said. “We begin to paint on that canvas a specific weekend for each of the parents that is designed to meet their needs.”

Rory Lawrence faces this canvas every weekend. As guest relations manager at David’s Refuge and a mother of a child with functional needs herself, Lawrence understands the vision the Pfohls had and carefully makes it come to life. Her office is bordered with shelves holding baskets of snacks labeled sweet and savory, information packets and welcome cards. On her pin-up board, a photo of her family and twin children smiles down at her desk.

“We want this weekend to be something that revives and rejuvenates them,” Lawrence said. “That’s why we pay such attention to detail.”

Attention to detail accompanies the breathtaking location of some of the B&Bs. Fernwood Farm in Cazenovia is one such place: the sprawling English cottage — currently blanketed with a clean sheet of snow — houses four large suites with antique furniture cradling beds and dotted with intricate cushions and pillows. The owners, Ginny and Howard Krumsiek, make breakfast in the morning for the couples and keep the drawing room warm with stuffed armchairs and board games.

The Krumsieks were one of the first donors to David’s Refuge. Their B&Bs display photos of the previous owners and even one of David as a child.

The generous donations to David’s Refuge, like the one the Krumsieks made, keep it going and allow the weekend getaway to be free for all the guests. Donations come in many forms, including from businesswoman Denise Goodwin who renders her services free of charge to David’s Refuge. Goodwin, a florist based in the Oneida area, heard David’s story at church, and at once knew that she wanted to be a part of the venture the Pfohls had embarked on.

“It was so remarkable to see how God worked through them,” Goodwin said. “It spoke volumes to their love of family and each other.” Goodwin has been preparing bouquets and flower arrangements for the B&Bs, saying that “it has been an honor.”

The sense of honor at being able to serve these parents finds a place in everything David’s Refuge does, said Kate Houck, the organization’s executive director.

“There’s no corners being cut from the way families are being served to the way the culture is here,” Houck said. “The culture lends itself to having people who are content and proud and honored to be a part of this mission.”

Houck has been at the helm of David’s Refuge for two years now. With the help of staff like Lawrence and a growing group of volunteers, she makes sure the mission and the vision stay strongly connected.

“David lived a very beautiful life,” Houck said. “The Pfohls gave him every ability to do what he could do.”

Houck has a framed quote on her desk that reads: “I keep doing things I can’t; that’s how I get to do them.” The quote, said by David, is set against a photo of him holding his father’s arm. The courage and strength the quote displays are reminiscent of an encounter Houck had with a mother who had stayed at David’s Refuge, which gave her a surprising perspective.

“She said David’s Refuge didn’t make their problems go away,” Houck said. “What it did was it actually made her shoulders broader. It gave her the ability to put more on her shoulders so that she could keep going, so less would continually knock her down.”

The rewards at David’s Refuge give do not end with the weekend — Houck said that six months after a stay, the couples would receive a gift card for dinner called “Parent Night Out.” David’s Refuge would pay for the childcare for the night, if needed, and the parents could enjoy themselves.

Aside from these gestures, David’s Refuge also hosts fundraisers and picnics throughout the year for the parents and children. They will organize a Valentine’s Night in early February at Eastern Hill Bible Church, where Warren was a pastor, and their summer picnic is packed with a carnival, barbecue, bouncy house and a range of activities. The same parents come every year, enjoying the love and attention David’s Refuge shows them — Houck said around 150 people had attended the picnic last year.

Houck also said the goal this year was to serve 250 couples, develop a model that would serve them year-round and expand toward Rochester and Binghamton.

Praise floods the David’s Refuge office and Facebook page — the office is decorated with paper cut-outs of palms with “Thank You” notes scribbled on them, sometimes by the children. Turning their loss and their son’s legacy into humanitarian service resonated with the efforts the Pfohls made to let David live on.

“David was a very loving person and his faith in a loving God was very strong. I just think of his incredible faith and love…his story gets to go on right now with David’s Refuge,” Warren said. “As a parent, to see your child’s faith and life live on to impact and serve and love other people— it doesn’t get better than that.”

Published on January 29, 2017 at 9:45 pm

Contact: dmurthy@syr.edu