Roy Watson was diagnosed with Polycystic Kidney Disease (PKD). By the time his kidney function had reached 35% he was very sick, in a lot of pain, and no longer able to work.
Roy and his wife Margaret were concerned about his serious illness and the toll it was taking on family life; specifically how it was affecting their two young sons, Francis and Owen. They were referred to The Center by their pediatrician who thought the boys might benefit from the Tender Living Care Program (TLC).
The Watson’s called The Center and met with Carol Sylvester, Coordinator of TLC Program. Both Margaret and Roy were impressed during their intake with the care and attention they received at The Center. Margaret and Roy described their intake as, “Great, it really prepared us for what coming each week would be like and the volunteers did a great job getting the kids comfortable.”
Once it was time to start group Roy admits, “I was reluctant to come at first. I’m a typical Maine guy; I tend not to talk about my feelings, but I am glad I came. I made a friend here and we connected around our pain and the medications we were taking.” Roy’s group often had sporadic attendance as each member’s health was at a different stage each week. “Some people were much sicker than I was; it was hard to lose friends but we were there for each other.”
Margaret and Roy described their family’s experience at The Center, “We found the groups incredibly supportive and the fact that people had different illnesses was very helpful since the challenges we faced were similar despite having different diagnoses. The support we needed was the same, no matter what illness or walk of life you came from. We were all in this together.” Margaret said one of the things she took away from The Center was that, “You can be what you are, and you don’t have to smile all the time. Coming to The Center took the pressure off all of us”.
Owen, now in kindergarten and Francis, 3rd grade said they liked and “looked forward to” The Center from the start, especially the Volcano Room. Francis said, “It was easy to talk to other people like me”. He also said The Center was a place where he, “talked about good feelings and bad feelings.” However Francis characterized his feelings we are glad that he felt The Center was a place where he could express all his feelings. The boys engaged in different activities from games to artwork, to create an outlet for all their emotions. Margaret said, “We all got better at dealing with our feelings and sharing them.”
Roy and Margaret had no prior knowledge about the Peer-Support Model before coming to The Center but when asked about it now they said, “I liked that the volunteers were not experts; they listened and helped us rather than told us what to think or do. It was amazing the empathy and perception that surrounded us. We always felt supported and safe, and this was during a very hard time for our family. They were here for us as we explored our own way to deal with our fears, pain, and hopes for the future. I could not believe something so good was here for us and that it was free!”
The Watson’s attended The Center for about 18 months and left a while after Roy received a kidney transplant. He’s doing much better and so are Margaret, Francis and Owen. Looking back Roy says, “You can’t measure what we got here. Here, we had a release, we felt more positive, and it was good to be with others.”