Recently, we said “so long for now” to a young adult who graduated from Crescent Cove’s services.
Crescent Cove provides respite and hospice care to children and young adults ages 0-21. Since we care for children with shortened life expectancies, we rarely have young adults who age out of our program when they turn 22. This year, we had two who became “graduates” of Crescent Cove.
Mari was just 16 years old when she came to Crescent Cove for the first time. Born with Spinal Muscular Atrophy Type 2, she requires round-the clock care for her medical needs. Her family had difficulties finding home healthcare nurses to come into their home and provide service, and while her mother and grandmother were able to take turns caring for her, they could not accommodate her 24 hours a day without rest. Because of this, Mari was hospitalized for two years in order to receive nursing care. While the nurses in the hospital were able to meet all of her medical needs, living in a hospital room is not a quality of life suitable for a growing teen. Mari’s insurance company wanted her family to find more cost-effective ways for her to access nursing care, so they began searching for resources. Eventually, they learned about Crescent Cove, which had just opened its doors.
“I was the only kid in the house,” Mari says of her first stay. Both she and her grandmother were nervous about coming to Crescent Cove. “Lots of my nurses have known me since I was a baby,” Mari explains, “At first, I was uneasy about coming to a place where I didn’t know any of the nurses.”
Luckily, Allie, an RN, and Hannah, a CNA, were here to welcome Mari for her first visit and make sure she not only received exceptional care but also had quality time in our Home. Mari has been coming to Crescent Cove ever since, staying for up to a week at a time. She enjoys crafts, board games, and taking strolls around the property along Twin Lake.
When asked what her favorite part of Crescent Cove is, Mari did not hesitate to respond. “The nurses and nursing assistants. You can get crafts and games anywhere, but without someone to play them with, it’s just not fun,” Mari says.
Last fall, a family was here for an end-of-life stay while Mari was here for respite. She was curious to know what was going on when she saw that the boy, Leo, was here with all his brothers and his mother, which is unlike a respite stay when a child stays without their family by their sides. She got to hang out with Leo’s brothers during their time at the Home and was present for the honor walk. During an honor walk, twinkle lights and staff line the hallway to honor a child who has died.
“Being a part of the honor walk was comforting,” Mari said. “It wasn’t at all somber or sad, it was more like a celebration of life.” She made a poignant connection with Leo’s mom, Carrie, who wrote Mari a beautiful letter after Leo’s passing.
For her final respite stay, Crescent Cove hosted a graduation ceremony, topped by a dessert of peanut butter pie, Mari’s favorite dessert. And since her stay happened to be over Halloween, the entire staff, volunteers, and other kids in the home dressed up to celebrate.
We will continue to be here for more young adults like Mari, ready with a game or craft to play with kids during their respite stays. “There need to be more homes like Crescent Cove in more places,” Mari says. “It’s something that more families need.”