Living as a Grateful Patient

September 7th is “National Grateful Patient Day” here in the United States, and I have to admit I had never heard of this observance until this year. I’ve always been a firm believer in the power of gratitude each and every day, but learning about this day has led me to reflect on my own journey living with Goldenhar syndrome and how I truly identify as a “grateful patient.”

When I think of my life as a patient, my first thought is of Upstate Medical Center in Syracuse, New York. So many medical professionals come to mind, many of whom I don’t even remember by name. It may sound silly, but for me, the hospital was a place where I felt deeply supported and well cared for. How could I not be filled with gratitude? 

I am grateful for the nurses who stayed to watch TV with me in recovery rooms. I am grateful for my lifelong surgeon Dr. Tatum, who guided me and my family through every operation with clarity and compassion. I am grateful to the local physicians who walked my parents through my diagnosis and connected my family to Upstate Medical Center and FACES. 

As I grew older, I would have nurses who were not assigned to my surgery but would come stop by and say hello because they had remembered me and my family from past surgeries. There were also nurses that would be assigned to me every time I went for an operation, these nurses made the hospital feel familiar and as comfortable as a hospital can be and I am incredibly grateful for their warmth and kindness.

How could I ever fully articulate my gratitude for FACES? Syracuse is about 70 miles from where I live, and with almost 30 surgeries and countless appointments, those miles added up quickly. A majority of those surgeries occurred within the first 10 years of my life, and in those years FACES eased the financial burden of our travels, for the first few months of my life my father stayed in Syracuse with me and therefore was out of work, while my mother navigated post-partum life at home with my twin sister. The financial assistance that FACES provided during that time gave my family tremendous peace of mind. The staff also provided resources about my condition and connected us with other families who had children with Goldenhar syndrome. FACES always assured us that we were not alone on this journey.

Now, in my role as FACES Communications Specialist, I have the privilege of connecting with young families who are just beginning their journey with a craniofacial diagnosis. It is an honor to give back and help other families like mine.

I cannot speak about gratitude as a patient without mentioning the incredibly generous donors of FACES, who make it possible for us to continue serving the craniofacial community. It is through their compassion and generosity that we are able to walk alongside these families. I will be forever grateful for those donors who made my own medical travel financially possible. I only wish I could thank each of them in person.

I wouldn’t be alive today without the knowledge and expertise of countless medical professionals. I wouldn’t have received such incredible care without the financial support of FACES, which would not have been possible without the generosity of donors.

This gratitude fills me with a deep sense of purpose: to live a life in service to others. I feel that my life is a tremendous gift, and it is my responsibility to return the favor. I encourage you, dear reader, to reflect on your own gratitude today, and to let that gratitude inspire you to help others.