By Kara McClurken (Bennett’s mom)
[Note: This post was written on Christmas Eve. To all of you who knew Bennett and to all of you who never met Bennett personally but are working by our side to create Bennett’s Village, we thank you for sharing our son and his dream with us.]
The light was blinking on the answering machine.
Currently there are a bunch of Christmas bears covering it up, so it’s unclear how many days it has been there. But I quickly press play as I am in a rush to get out the door on my last day of work before the holiday.
I know the voice instantly and I stop in my tracks. It’s one of Bennett’s doctors from Boston Children’s Hospital. THE DOCTOR. The one who first gave us hope. That our son’s life might not be all “take him home and love him” but “there are treatments on the horizon” and “each child is different” and “here is what you need to make sure each day can be his best day” and “call us if you need anything.” Who helped us process this devastating diagnosis and who kept the hope alive that we might just beat the predictions. Who wrote letters to our insurance and who told us to have the ER call him. The one who once called to check up after a local hospitalization from his cell phone—when I returned the call late in the evening the next day expecting to get his office voicemail I actually interrupted him in a restaurant with his family and instead of being annoyed, he was genuinely happy to hear from me. THAT doctor. The one who always remembered every detail of changes in Bennett’s status. The one who always had time to stay and answer a few more questions, in spite of his packed schedule on clinic days. The one I called after we lost Bennett. Who seemed as stunned and devastated as we were, because we had just talked a few hours before. The one whose messages of hope I have deeply missed since Bennett’s passing.
The message on the machine said that he’d been thinking about us. That he thought about us often. That he hoped we had a good holiday. That if we ever needed anything to let him know. He may have said some other stuff, but I was too busy crying tears of joy. You see, one of my greatest fears is that folks will forget Bennett, that he lived, that he mattered. And here was a doctor—not his local doctor, but a specialist from out-of-state, who saw Bennett for a few minutes twice a year, calling us two years later to say that he still thought about our son and our family. How many doctors do you know that do that?
Except, as the tears ran down my cheeks, I realized that I know several. The doctor who fought so hard to get Bennett treatment—the treatment that transformed his final year of life– she continues to drop notes and gifts by our house on anniversaries and birthdays. She sends us rocks and shells from all over the world to add to Bennett’s collection. Another doctor, who Bennett only met once, who has since left UVA and no longer even lives in Virginia, still took time out of his busy schedule to talk to the landscape architects about how best to make Bennett’s Village a truly inclusive place to play. And it’s not just doctors.
One of Bennett’s greatest gifts to us was the way in which he connected us with our community, with doctors and nurses and teachers and therapists and social workers and kids and adults with SMA and kids whose diagnosis remains unsolved that we would have otherwise have never known. People who taught us about kindness and generosity and love and living in the moment and inclusion and connection and focusing on what really matters in life. People with so many gifts and so many voices and so many perspectives, all who contribute to making this world a better place, and who helped give Bennett a better life.
Even in his death, Bennett continues to connect us to our local and larger community. As we work to build a place where ALL can play, we meet folks from all walks of life, architects and specialists, teachers and parents, business people and medical staff, families and friends who hear our story and who continue to go the extra mile to help us build a legacy in honor and memory of our son Bennett, who is not forgotten.
I started to call Bennett’s doctor back, but I realized that the words I wanted to say would stick in my throat—instead I sent him an email, to thank him for his call, for his medical calling, for the gifts he (and his family) ended up sharing with the world. For the beacon of light he was during some of our darkest days and how his message of hope sustained us in some of our most fearful times. His call was a joyful reminder of the power of hope, of Bennett’s great gifts to us, and the love and care of Bennett’s community.
If like me, you find yourself struggling in these days which used to be filled with such joy, if you are scared or lonely or grieving, if you are feeling your way through the dark, I share with you this light…from the red glow of an answering machine.