I like to touch a cylinder that hangs around my neck when I speak about organ donation. This cylinder contains the ashes of my son, Adam. Touching Adam strengthens me. I find my voice, his voice.
Adam was fond of his name. His mom knew she was carrying a boy; we called him Adam in the womb. On April 22, 1993, after the Sudbury doctor stunned us by announcing we had a “beautiful baby girl,” we named our child Rebecca Adam. Rebecca revelled in the boy’s middle name. All tomboy! Batman and Montreal Canadiens’ goalie Carey Price were his two heroes. He played goalie for seven years in Kanata.
My son’s final five years unfolded during his late teens and early 20s. Rebecca announced on Facebook in 2014 a “long-wanting decision” to be Adam, a choice we accepted, worries and all. His transition dovetailed with another epic journey, an epilepsy disorder that repeatedly knocked him down. His brain scans looked like Canada Day fireworks, with flares pointing to a trigger point deep within the brain. A resilient Adam bounced back up every time, enduring two brain surgeries. Removing that brain tissue might control the seizures. Adam said the second surgery was a “no-brainer.”
Two months after that surgery, when I was in California visiting my sister, Adam’s mom called; he’d had a seizure in a hot tub and was at the hospital. When my sister, a nurse, dropped me at the airport on January 23, she grabbed my arm. ‘“Hon, we want Adam to be well. But if it is not to be, he is a young man with healthy organs. I know Adam wants others to have this gift from him.”
For the entire red-eye flight home, a good angel and a bad angel compete for my son. I root for a miracle. I plan a funeral.
Back home, I join a 36-hour vigil. Adam’s mother and I are separated but still lovingly co-parent. In the final hours, with Adam lying between us, I bring up organ donation. She tells me she knows what Adam wants. At 16, when his driver’s licence came, he talked to her about organ donation and registered without hesitation. There would be no hesitation from us; the medical transplant team required our consent. Indeed, it was the easiest decision on the hardest night of our lives.
“When it became clear that we could not have the miracle we wished, we stepped back and let other miracles occur”
Three weeks after Adam died, Trillium Gift of Life Network wrote that four people would live because of Adam’s generosity. “An adult female with extensive liver damage. Two adult women with end-stage renal disease,” began the letter. We smile when we read that our son’s brave, beautiful heart has been gifted to a man.
That should have ended the story, but in early March, we received an anonymous three-page letter. “There is no one whose generosity, caring, thoughtfulness, and compassion even remotely compares to that of your beloved family member, my donor. Words cannot possibly explain the feelings of pure joy, love, respect, and gratitude I have toward your family member and all of you.” Our reply, also anonymous, made vague references to a son’s epilepsy, hockey goalie years, and a Celebration of Life. “… When it became clear that we could not have the miracle we wished, we stepped back and let other miracles occur…”
Late one night, in my own sea of grief, I accepted a Facebook friend request for a person dubbed Heart Recipient. No picture or town, only one friend! I went to bed and didn’t look at the computer much the next day. Thirty-six hours later, on my pillow, I hear clearly Adam’s voice. “Heart Recipient, Dad!”
I check my Facebook account and see a message from Heart Recipient. He’s certain he has our son’s heart; he understands if we do not want further contact.
I reply: “You have my son’s heart? Of course, I want to meet you. And it’s pathetic you have only one Facebook friend.”
Apparently, the heart recipient had checked obituaries, googled hints from our letter — goalie, epilepsy, Celebration of Life — and added the date to find Adam’s obituary. And he knew from our letter that we also welcomed connection and hoped to hear about his recovery.
We have since forged an extraordinary friendship. I travelled to Welland to meet Heart Recipient, a.k.a. John Dickhout. After talking with the 53-year-old about that weekend in January, his wife, Lynn, a nurse, pulled out a stethoscope and I listened to a racing heart. “Adam, slow down, for John’s sake!”
John’s life was not only saved, it was changed. He quit an international call management job to become a professional actor; he’s run road races, and we’ve been there to cheer him on. John joined me for five of my Soar, Adam, Soar book events. Whenever I ask too many questions about his health, he grins and calls me “Donor Dad.”
Adam’s death put us in a place of permanent grief. But John’s determination to know the donor of his heart throws us a precious lifeline.
Register to be an organ and tissue donor here.
Rick Prashaw is a writer, public speaker, former political staffer, and the author of Soar, Adam, Soar.