Emotional experiences, whether positive or negative, become part of our personal narrative. They define who we are and how we want to make a difference. Sometimes, though, we don’t have the skills or expertise to make that difference, and we feel frustrated—even helpless.
“I don’t know what it is, but it certainly is not the flu.” My daughter’s pediatrician looked nervously, first at my daughter, then at me. “You need to take her to the children’s hospital. Now.”
And that’s how I wound up spending Labor Day weekend in the ICU, hovered over my 18-year-old, watching her die.
Sometime in the past few weeks, she’d picked up a case of bacterial meningitis. Meningitis itself isn’t uncommon. Throw in a case of sepsis, though, and you’re suddenly dealing with one of the deadliest diseases in the world. Most children who contract the disease die within hours. By the time we’d gotten to the ICU, my daughter’s internal organs were already shutting down.
Somehow, she managed to hold on. Every so often, a physician would approach and explain the next extraordinary procedure they’d use to try to save her life. You’d think that at some point, I’d get used to hearing “the talk” and grow comfortable with the idea of my daughter dying, but each time was as terrifying as the last.
We were like poker players. We lived by the numbers, by the lab results, by the blood tests. They dictated the quality of my child’s life, and that dictated the quality of my own. I realized very quickly that my whole life and future depended on that team of devoted men and women—the nurses, the doctors, the technicians, the surgeons.
In an odd way, even though I was going through the worst experience any parent could ever be subjected to—watching my daughter die—it was so extraordinary that I realized I wanted to be involved with this spectacular group of people for the rest of my life.
I knew that if she survived—even if she didn’t survive—I was eternally grateful for what we had experienced. I wanted to give back as quickly as I could.
This donor was powerless in the battle against her daughter’s disease, relying entirely on the healthcare professionals who participated in and coordinated her daughter’s care. As she watched, a thought gradually overtook her. A financial contribution to the neurobiology division would be more than a way to honor and empower the team that so diligently and compassionately cared for her daughter. It was also a way to take an active role in her daughter’s care.
Although this happened many years ago, the family still supports the children’s hospital. In addition, they support the adult hospital where their daughter continues to receive care. They have become passionate supporters of improved patient and family care and their philanthropy has grown. In the beginning, philanthropy was a vehicle by which to express gratitude and play a role in their daughter’s care. Now, they hope to protect other families against the pain they endured.
Can you think of a time when a philanthropic contribution helped a donor cope with a loved one’s illness?
How did you participate in that journey?
What was that experience like for you?