As someone going into the medical field, I never thought I would have an issue with death, but I was wrong. In my future career, we cannot save everyone. With this in mind, I understood I may lose patients and I accepted that. Learning about hospice changed how I felt about death and dying. At Ryan House for pediatrics at the Hospice of the Valley, I had so many meaningful hospice patients, but one in particular changed me forever.
Ryan House was named for a child named Ryan who was born with Spinal Muscular Atrophy. As many as 80% of children diagnosed before their first birthday don’t survive to their 2nd birthday. The nurses and doctors had told their family to cherish the time they had left with him. One nurse suggested the family go to a hospice unit called Helen House, which offered respite care for children and families and pediatric palliative care. Helen House’s mission was to provide “palliative care for children with life-limiting conditions” as “an active and total approach to care, embracing physical, emotional, social and spiritual elements.” They were so touched by the care they received from Helen House that the family founded Ryan House in Arizona to give the same attention and love to other families.
On my first day at Ryan House, I was nervous to have so much responsibility for a child, but the nurses were so welcoming. I was excited to visit my first patient, and my four-hour shift flew by! I had so much fun with my kid playing with Legos, singing Disney songs, and playing games on the Xbox. After my first day, I was pumped and knew I really liked it there.
But my patient said something that left me shocked when playing Legos. He said, “I know I’m sick, ya know.” I was left speechless because this six-year-old understood that he was sick. He continued, “I know because I see all the other normal kids don’t get extra things like I do.” I replied, “That’s because God likes you more.” When it was time for me to leave, he asked me to stay longer, and unfortunately, I could not. I came back the next day even though I didn’t have a shift scheduled because I had so much fun with him. The way he laughed and smiled made me feel like I was helping him feel as normal and loved as possible. This small child made me realize that kids are smarter than we think, and they know they are dying but still move forward. When many adults get sick, they become sad and don’t know how to handle their emotions. But when kids know they are sick, they choose to handle it “like adults” and make the best of it.
Another hospice patient who changed me was a 14-year-old girl. When I first visited her, she was playing monopoly. I thought she was just playing a fake game since she had little to no movement in her upper body. But when I sat down to play with her, I was surprised when she told me to pick a game piece and start at go. When I landed on her property and owed her $150, I gave her $200. When I tried to help her count the amount I would need back, she looked at me and said, “I can do it.” I was amazed by how she played the whole game on her own! She took and gave money, she moved her own piece, and laughed at me every time I landed on her place. I was so shocked because most of my patients don’t have the mental capacity to understand money transactions or play a game the requires patience and thinking.
Since monopoly games last forever, I suggested we do something else. When I asked her what we should do, she suggested, “Let’s make a cake.” Despite the limited movement of her hand, I didn’t want to underestimate her again, so we went to bake. When mixing all the ingredients, I dropped an egg on the floor, and she laughed at me and called me butterfingers. So I started dropping spoons and utensils all around the kitchen “on accident.” She laughed so much that it became contagious and I started laughing with her. I let her mix the ingredients while I got the pan ready, and when I turned around, she dropped the spoon, causing batter to fly everywhere. Instead of getting angry with her limited abilities, we both just laughed until our eyes watered. When the nurses came in to see what the noise was, we both just started laughing again. When the cake was done, we decorated it together, and I helped her write her name on it. I had so much fun that I didn’t realize that I had been there for 2 hours past my shift. Saying goodbye was the hardest part of that day. But before leaving, one of the nurses thanked me for having fun with her and told me that they hadn’t heard her laugh until that day. I was just happy to meet and play with such a smart and amazing girl. It was one of the best days of my year.
Working with Ryan House not only made me feel blessed for everything I have, but it also opened by eyes to death. I learned that death isn’t something we should be sad about or think of as a horrible thing. Dying is just another chapter in our lives that will lead us to a new beginning. I love my hospice shift and meeting new children that I can learn from. Hospice provides a special form of support for the patient and their loved ones through their goal to ease pain and discomfort while providing spiritual and emotional support. I am so happy that I could be part of something to bring some laughter into a child’s life.