When I arrived in Boston for medical school, I was determined to know him. I had heard him speak at national conferences before, but this was my chance to really meet the legend in our Down syndrome movement. After my parents had dropped me off—and before all of my bags were unpacked—I walked to his office at Children’s Hospital Boston, but what I didn’t realize was that Allen would quickly become my mentor, my colleague, and, most preciously, my friend.
He taught me you get when you give. No sooner had I begun medical school, Allen was driving me to Board meetings for the Massachusetts Down Syndrome Congress. Me, a Board member? Allen showed me that while my classes at Harvard Medical School were important, richer lessons were to be found in this non-profit, parent-driven organization. For the past ten years, I have learned more from the families of the MDSC than I will ever be able to repay. As I sat by his bedside during some of his final days, Allen still asked me how the “boys and girls of the MDSC” were doing. He never believed that doctors should be stuck in hospitals.
He taught me to be unsatisfied. Our friends with Down syndrome deserved to have their mysteries unlocked, so Allen would push me to find the answers. I would arrive at his office regularly at 7:30 a.m., prompt, to share my far-flung ideas about projects that I was considering. Allen told me that I was not crazy. In fact, I was not crazy enough. He prompted my research trip to Spain because he knew—before I did—that the journey would be formative. Allen remained my research mentor since that first project, and during my last visit to his bedside, I shared with him three papers that were six years in the making. He helped shape this project, and I told him that I would keep asking questions.
He reminded me to believe in myself. Life cannot be scripted. Allen knew that, and I think, preferred that. But, sometimes, I wish I could have avoided certain dramatic scenes in my own life. I remember that after sharing one tough day with Allen, he told me that I must meet him at a local Dunkin Donuts. Right there, on napkins, he sketched out for me his view of the situation. And, then, he looked me in the eye and told me that I was special. I needed that, no matter how much validation I might have found elsewhere. Allen taught me that our most graceful moments in life could be found during the most trying times.
He told me to seek unexpected cheer. Every so often, Allen would meet with me to review my career plans. I would write down some goals that I would hope to accomplish within the next year or so. Yet, after we got through those items quickly, he would ask me about more important life goals. He seemed more pleased when I told him that I was trying to learn Spanish, that I liked to make cold soups, and that my wife, Carrie, and I were taking dance lessons. And, he was right: my academic accomplishments will always pale in comparison to these private goals. Carrie and I still remember with great fondness when Allen, unannounced and unexpectedly, took to the podium at our wedding and reminded us all of the importance of “good cheer.”
And so, today, I have the remarkable privilege of working as a physician in the Down Syndrome Program at Children’s Hospital Boston, a program and a place where Allen shared his wisdom and his heart for decades. And, it is already here on a weekly basis that I see his legacy at work. They may not all know it, but children with Down syndrome have more opportunities today because of Allen. Parents have fewer battles to fight because Allen tore down walls. Grandparents play leading roles because Allen understood them to be central figures in family life. Brothers and sisters become advocates because Allen established precedents.
He would be the first to remind us that we all need to “carry on.” I will. We must. And, he will be right there with us.
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