Does anyone remember the movie Awakenings directed by Penny Marshall? I sure do.
In case some readers don’t know what it’s about, the film depicts a neurologist who discovered unexpected benefits of L-Dopa, a drug used for patients with Parkinson’s Disease. The neurologist oversees a trial run of L-Dopa for catatonic patients in a hospital who are “awakened” after decades of living their lives in catatonia albeit for only a short period of time.
What I remember most about the movie is an uneasy feeling in my stomach that however courageous, the patients’ taste of having a fair shot at a life they could visibly savor was going to be short-lived. I didn’t want to see them return to the way they had been.
Little did I know at the time that I would some day be a father, let alone the father of a stunning girl with an extra chromosome. The day my husband and I found out definitively, he needed to leave for Europe. I was suddenly alone and feeling a grief I had never known. I went through motions at work, needing to drop off a fundraising appeal at the local Post Office in a small town in New Hampshire. The only other person I saw there that evening was an older woman who asked, “I’ve had a disability my entire life. Can I tell you my story?” I was stunned as it was the first time I met her and I had not even spoken to her. Why this person? And why those words, the first that she had ever spoken to me?
My head already spinning, I gently took the woman’s hand and said, “I’m sorry. I can’t.” I mailed the appeal. I drove into the driveway of a family with an 11-year-old boy with Trisomy 21 or Down Syndrome. I sat there for 10 minutes in my car wondering if I should knock on the door. I did not. I drove home and cried. I crawled into bed and did not want to get out of it the next day, but I did. I went to work and reached out to other families I knew who had sons or daughters with Trisomy 21. I knew nothing, but I soon learned. I will write later about these remarkable families.
Six years later, I’m stunned and embarrassed about my initial reactions to the news about my daughter. Yet I also know, and I cannot emphasize this enough, Ellen is at the high end of the spectrum, a word I struggle with but accept at the same time. My family is lucky and we know it and are grateful beyond belief. And hold our breath.
Ellen has been pumped with vitamins and knowledge since the day she was born from her two dads, one of whom is a former Fulbright scholar and the other of whom holds a doctorate from Harvard. Although I consider my parent skills modest, especially compared to my husband, I hope I have contributed to a foundation of wisdom for my daughter upon which she can rely.
To my simple, ridiculous, but fortunate mind, Ellen has been awake her entire life. My job and my biggest challenge (and perhaps greatest joy) in the years ahead will be to help her stay as nimble in mind, body, and spirit as she already is.