The Most Important Summer

I am a fiction writer. I like to write stories about people, their challenges, their fears, and joys. I do not like writing about myself, because for so long, my life was fiction. I told many tales in order to escape from my reality. I didn’t want to be someone with congenital heart disease, so like my stories, I changed the narrative. I now embrace my truth and advocate for those like myself, but I still find it difficult to write about myself.

However, 40 years ago, my life was saved, and I feel the need to acknowledge that moment and express my gratitude.

In the very early morning of Monday, June 16, 1980, I lay on a hospital gurney feeling a chill, despite the several layers of stiff hospital blankets piled onto my body. I felt so small, as people dressed in green scrubs and white coats towered over me. Each person had important information to share with my parents; I tried to listen to the words, but my nerves jumbled every sentence.

The only people I understood were my parents. My mother kept herself attached to me, either by holding my hand or stroking my forehead. I thought I understood what laid ahead of me—I figured it would be just like one of my routine catheterizations. But as time ticked on, I noticed different smells and sounds. The whole atmosphere presented itself differently than anything I had ever experienced before. My whole childhood had been filled with new methods and ideas; this was supposed to be no different. My mother always trusted it would be OK, so in turn, I knew it was going to be OK.

But on this June morning, it was different. I caught a few glimpses of fear in my mother’s eyes. Perhaps there had been fear in her eyes several times before, but I never noticed it or allowed myself to acknowledge it. At that moment, I knew this was very serious and I was scared, not just of the pain, but of the what ifs.

What if this was the last time I would ever see my mother? What if this was the last time I could ever see, hear, or feel things? What if I didn’t get any better, and instead I got worse?

Asking if I was ready, the gurney started to move. I nodded and had to say goodbye to my mother and father, and I did, and I was OK until I wasn’t. The moment I realized my mother’s hand was no longer connected to me, a visceral scream burst from my lungs as I cried, “I changed my mind.”

I told myself I needed my mother’s touch just one more time but honestly, 10 more touches probably wouldn’t have prepared me.

I was absolutely terrified. I remember feeling tears stream into my ears as I watched the lights sail above one by one over my head. Then nothing, just blackness. Then my mother’s touch again.

It took me many years to realize the miracle of that day. For much of my life, I thought I would pass long before I turned into an old lady, but no longer. Today I am 51 years old with a gorgeous son who needs me around when I am an old lady.

Two years ago, my mother and I traveled to Utah to visit with the surgeon from that June morning. His name is Dr. Donald Doty, and before I turned 50 years old, I wanted to see him again and thank him for the life he gave me. Dr. Doty performed the University of Iowa’s very first Fontan on me that day. Without his courage and compassion, I would not have the treasures I have. He was my miracle that day. Dr. Doty passed away a year to the day after our reunion lunch. I am so grateful for that one last experience with my hero. Today I honor him for what he did 40 years ago. Thank you again, Dr. Doty.

I also want to acknowledge my mother. Now that I am a mother, I can’t imagine the level of strength it took to get through that day. Parents of children living with CHD are some of the most powerful creatures to walk this earth.