My son, Jake, is a beautiful 19-year-old, who suffers from mitochondrial disease and Dravet syndrome. These life-limiting, progressive diseases have no cure. Jake is developmentally delayed, has significant medical needs, and has hundreds of seizures per year. He lives at home with his family, and despite obvious challenges, Jake is generally a happy and loving child who enjoys a good quality of life.
Parenting a child with complex medical needs is, at best, stressful and challenging. It is often exhausting, frightening, isolating, and overwhelming. Those emotions can be mixed with feelings of great joy and gratitude. Sadly, a serious diagnosis often means a life-limiting prognosis, and an ever-present worry about end of life. Parenting such a child long term can be especially challenging. On one hand, you have the gift of time with your child, and yet, there can be years of uncertainty, grief, and full time caregiving and care management.
What can make a world of difference to such patients, parents, and families? A network of resources and care providers who can help to ensure support at each stage of the journey. Our family was lucky enough to have an insightful and compassionate physician who referred us to a statewide pediatric palliative care network in our home state of Massachusetts. Unfamiliar with palliative care, I mistakenly associated it with the end of my child’s life and avoided it. It took a few gentle follow-up conversations with our physician before I was ready to welcome palliative care and to explore what it could offer.
Here’s what palliative care has meant to us. It has provided Jake with years of comfort care, including music, massage, and pet therapy, helping him to feel happy and relaxed. It has provided us with a medical team who knows our family, understands our goals, sees the big picture, and helps us think through difficult decisions. It has allowed us, at our pace and without judgment, to discuss end-of-life planning. Whether it is a therapist, nurse, social worker, or chaplain, we have benefited from a team of caring and resourceful providers who have our family’s best interests in mind.
Seven years later, palliative care continues to be an essential part of Jake’s care. It provides comfort, helps us maintain a good quality of life for him at home, and makes sure our family is supported.