FSPA: embracing children and families at Ryan House
By Sandra DeMann, Franciscan Sister of Perpetual Adoration
"Palliative care for children with life-limiting conditions is an active and total approach to care, embracing physical, emotional, social and spiritual elements.”
This is the mission of Ryan House, a place of celebration of life for terminally-ill children and their families. It's also a ministry I fell in love with.
Ryan House is a special place located along the unexpected pathway of a family whose life-changing experience began at Helen House. A son was born with Spinal Muscular Atrophy to the Cotter family while they were temporarily living in England. Initially, they were told he probably would not live for more than 18 months. His name is Ryan.
Ryan’s parents were devastated as they prepared to accompany their son on his journey. With fate, however, they found respite and palliative care and the support they needed to live at peace with this new reality at Helen House: a home in which their son was treated as a toddler with limitations yet given the chance to have fun and enjoy his life.
When it was time for the family and baby Ryan to leave England and return to Phoenix, Arizona, they searched for a similar place in the United States but found none. When the community heard the Cotter's call to care, many opened their hearts and Ryan House came to be. Today, Ryan House provides comfort to families like the Cotters and Ryan (who, now in high school, says he’s well beyond his “expiration date”). He is living his life to the fullest and planning for his future.
At Ryan House, hospice care is not given in a hospital-like setting. Nurses don’t wear uniforms. There’s a sensory room, art room, music room, swimming pool and S’mores Café (the kitchen); a garden and playground, complete with a bubble machine, where everyone can get some fresh air and a change of scenery. It’s rare that a child doesn’t find something special. And in turn, the children can leave their own imprints on Ryan House — personal, multimedia messages — in the room known as the Story of Me.
I was looking for a ministerial opportunity to volunteer with children and I fell in love with Ryan House from the very beginning. Volunteers are there to help the children have fun. We become familiar with the latest children’s programs and movies and, the other day, I played the board game Sorry! for the first time in more than 60 years! We are forever discovering ways to make a child smile (sometimes it’s an “eye smile”) and laugh. You learn that some enjoy just having the chance to be part of the group for a change, even if their participation is limited to perceptible enthusiasm. If you were to ask me, after I turn off a movie or put away a game, what I receive from this ministry is at least as much joy and peace as I try to give to the parents who bring their child to Ryan House. It means more than I can say.
Zach and Ashley Crowell celebrate an early first birthday for their son Connor at Ryan House. “The nurses and staff mobilized quickly, bringing in balloons, cake and gifts for a family celebration we’ll cherish for a lifetime,” shares Ashley.
Photo by Ryan House
Ashley Crowell wrote a letter expressing deep gratitude for the pediatric hospice care they received for their son, Connor, at Ryan House.
Connor's mom so generously shares an excerpt from her incredibly personal reflection.
A little over a year ago my husband and I, holding our baby boy Connor in our arms, heard the worst words any parent can hear: “You need to be prepared to say your goodbyes.” Without Ryan House, the final weeks of Connor’s life would have been consumed by worry, devastation and utter sadness. While I did experience these emotions, I was also able to experience moments of joy, happiness and comfort, which I wouldn’t have experienced without Ryan House.
Learn more about Ryan House.