Sam is curled up in his mom’s lap. At a glance, they look like any mother and 3 year old having a snuggle: Sam’s stuffed tiger hangs over the edge of the couch, and Laura is reading him his favorite story about a kid who wishes for duck feet. Sam and Laura aren’t like other moms and kids though, and moments like this one are never taken for granted.
Sam was born with life limiting heart and lung defects. He wasn’t expected to live to see his first birthday. But, Sam defied the odds. He learned to crawl ‘army style,’ he loves to splash in water, he has a contagious laugh, and he greets everyone he meets with a hug and a smile.
“The day we left the hospital with Sam was so confusing,” recalls Laura. “We were relieved to be going home after weeks in NICU and multiple procedures. But, it was really scary. I didn’t think we would be able to care for him. I felt like I needed to be his nurse more than I needed to be his mom, and I was overwhelmed. By the time the palliative care doctor who helped us with his discharge plan mentioned hospice, I just shut down.”
Like many people, Laura thought that bringing in hospice meant giving up. She thought it meant that they would have to stop seeking treatment for Sam, and worst of all, she thought it meant they would have to stop hoping.
“I look back at that moment and I realize that I really had no idea what hospice was, or how they would become such a welcome part of our lives.”
Sam’s pediatric hospice team consists of specially trained clinicians including medical doctors, nurses, social workers, volunteers, aides, spiritual counselors, and bereavement specialists. The team works with Laura and Sam’s family to make sure that Sam’s care focuses on quality of life. The team helps Laura navigate the sometimes difficult treatment paths and insurance paperwork; and they help everyone who loves Sam to understand what is happening and what to expect.
“I am grateful for our hospice team – every member of Sam’s team is focused on providing us as much time and quality of life as is possible. They showed me that I can be Sam’s mom instead of his nurse. They thought of things I never thought we could do, like hold him for as long as I wanted, give him a bath, play with him on the floor, and take lots of pictures. This Halloween, Sam is going to dress up like Spiderman.”