As the parent of a child who is medically complex, the first two years of the journey were marked by fear and isolation. The feeling of being alone in this journey was how I imagine it feels being stranded on the frozen continent.
I didn’t know other parents who had children with trachs or ventilators, or any other complexities for that matter. My friends and family members, while well meaning, did not understand my experience. In their attempts to encourage me, they often quoted trite, meaningless proverbs that left me feeling empty rather than hopeful.
As a first time mother, I was going through the regular learning process, with the added pressure and stress of managing my child’s complex condition. While I felt like I was doing the best I could do, there was a sense of loneliness that I couldn’t overcome.
In order to overcome the initial sense of isolation, I had to first be willing to move out of my own comfort zone. This didn’t happen intentionally. I signed my son up for a playgroup through our local Early Intervention program, and there I met other parents on the same journey. Even though our children were facing different challenges, we were on the same ship, working toward making our children’s lives better.
I also found Facebook groups for parents of children who are medically complex. These groups provided additional social support and broadened my understanding that I was not alone. While I was careful not to take medical advice from these groups, I found it helpful to see that many other parents were seeking that same support that I needed. I looked back at the shores of Antarctica; I was not there anymore.
Finding My Village
In addition to finding a sense of community in Facebook groups, I also found parents of children who had the same rare condition as my son. We share our challenges and learn together, passing along useful information about treatments, surgeries, and medications, as it becomes available.
I also joined the Family Advisory Council at our local hospital and began to mentor other parents. In this role, I helped to contribute to hospital policies and make the path easier for other families. I later took on leadership roles in our hospital’s Patient and Family Partnership Council, and I now serve on the hospital’s Board and safety committee.
These forums welcome my experience and my voice as a parent, and I am able to contribute to the village of parents like me, who are navigating the larger world of advocacy beyond our own children’s care. Becoming part of these various communities felt like settling down, becoming rooted in my own experience, and trusting that I was in the right place, at the right time, with the right people.
The concerns my family dealt with in managing complex care are part of a much bigger picture. Venturing beyond our personal story and into the big world of health care policy was a new adventure. The larger health care community needs voices like ours to help set policy and guide the work toward improving safety and the patient experience.
I have been fortunate to have opportunities to advocate with my state’s legislative bodies, on Capitol Hill, and even globally. Through organizations like our local board of developmental disabilities, Solutions for Patient Safety, the Children’s Hospital Association, and the Beryl Institute, I have had a chance to use what I have learned to affect the local, national, and global efforts toward improving care.
Our individual journeys as caregivers can serve as a bridge to improving the experiences of others. Once we master the care of our children, we have many opportunities to share what we have learned and contribute more broadly to improving the lives of others. This is a journey we did not expect to take, but the scenery is, more often than not, awe-inspiring.