I sat there in complete awe of the events unfolding around me. It was like I was in a dream. I had a smile on my face so wide that it actually hurt. My momma’s heart overflowed with pride. With one hand I waved vigorously to a sea of faces, with the other I held tightly to an eight-by-10-inch picture.
On January 1, 2016, I had the amazing privilege and honor of ringing in the New Year by riding on the Donate Life float in the Rose Parade in Pasadena, California. Although it was a joy to ride, I did not ride for myself. I rode in honor of the person framed in that eight-by-10-inch photo.
My son.
My sweet, precious baby boy.
After a brief 1-hour-and-20-minute dash of life, my son became a donor. Saying goodbye to your baby shortly after birth isn’t something most parents are faced with, but it was part of our reality. For us, making the choice to participate in donation made sense and brought healing. Despite my son’s small size and the fact that he did not qualify for transplant donation, he was still able to give his pancreas, liver, blood, skin samples and whole body to researchers. My husband and I were extremely proud. In the 3.25 years since his passing, we have learned that his gifts have made a huge impact. New equipment has been developed. New techniques have been documented. A new procedure has been passed through the Food and Drug Administration. Lives of other babies are literally being saved because of him and his gifts.
Yes, my momma’s heart overflowed with pride that day as I sat on the float.
During the incredible ride down Colorado Boulevard, I did my best to make eye contact with people in the crowd. Most people would smile and wave excitedly. Their eyes would then move from mine to the picture I carried in my hands. They would stare for a moment, realize it was a picture of a baby, and be touched by what that picture meant. It meant a baby had died and became a donor.
Many of these strangers would send me a look of sympathy and say, “Awwww.” Others would turn to the person next to them and say, “Look, a baby!” Some mouthed “Thank you” to me, or placed one hand over their heart and waved to me with the other. Other people’s eyes filled with tears. Each time a person in the crowd was moved by seeing my son’s picture I wanted to jump off the float and tell them his story. I wanted to tell of his short yet wonderful life, and how his legacy lives on. I wanted to let them hear the momma’s pride in my voice… Instead I smiled as much as I could, hoping my face would convey all that I wanted to say.
Now, as I sit at my computer, I struggle to express just what it meant for me to be able to ride on the float. Yes, it was a momentous, fun, once-in-a-lifetime event, but for me it was more than that. It meant my son was being recognized, remembered, celebrated and honored. More importantly, it was an opportunity — an incredible opportunity.
By riding, I was able to be an advocate for donation, specifically neonatal donation. It allowed me to shine a light on donation for research, an option often overlooked. (In fact, my son is the first research-only donor to ever be represented on the Donate Life float.) It gave me the chance to represent all the other neonatal donors and their families who have given – specifically, the over 50 neonatal families who have given to research since my son’s donation in September 2012. It let me raise awareness for both infant loss and for my son’s condition, anencephaly. It let me show the world that even a brief life can have a lasting legacy. It allowed a seed to be planted in the hearts and minds of people watching — the realization that a baby can be a donor! Although I was not able to share my story with each person in the crowd that day, I believe just being there, holding his picture, had an impact.
I will forever be grateful for the opportunity that I was given to represent so many things and to honor my sweet boy by riding on the Donate Life float. It was truly a “proud momma moment” for me, something that, as a loss mom, are few and far between. As I finish typing, I must confess that I still have a smile on my face so wide it actually hurts, and my momma’s heart continues to overflow with pride!