Marisa Toomey, M.D.
If there is one thing that has been a constant in my life, it is the fact that my father does not cry. It is not that he has ever been one to grunt monosyllabic answers or greet my dates with a shotgun. He bakes, he likes independent films, and he always reminds me “your mother is the one in charge.” Still, he has never openly shed tears. Thus, when I saw him cry in public a few years ago, it sent me into a bit of a tailspin.
My parents and I were at a dance for my younger sister Devon and other adults with developmental disabilities. At the time Devon, who has Autism, was twenty-five. Unlike most of the other individuals there, Devon does not live in a group home. She still resides at my parents’ house.
She was diagnosed in the late 1980s, when the only pop culture reference was “Rainman” and when no one had a puzzle-piece, ribbon-shaped bumper sticker indicating their awareness. I cried all of the time back then. No one understood her, and everywhere we went, other children taunted “freak” and “retard” at her. My father always reminded me that all that mattered was that she was my sister and that we loved her just as she was.
He cried now, over twenty years later, because the hope he felt back then was gone. He saw a future for Devon that none of us wanted. An inevitable group home once my parents become too old to take care of her. A social circle of individuals who cannot always respond to my (highly verbal and incredibly outgoing) sister’s pleas for friendship. A lifetime of wishing she could be a part of something more.
For several years, I had begun to feel the same way. I had applied to medical school with the sole intent of becoming a developmental-behavioral pediatrician. I had always wanted to be my sister’s doctor, and I had always believed that my personal experience with Devon gave me an insight that would make me a more compassionate physician.
As the years passed, and as my sister left the organized world of special education and drifted into the nebulous territory of adult services, I began to wonder if it would all be too difficult. It was clear that Devon was unhappy leaving the friends she had made at her school and being forced into an adult services day program, where many of the people are older and non-verbal.
I began to think that I would be the worst kind of developmental-behavioral pediatrician if I had no hope for the future of the children of whom I took care. I convinced myself I should do anything but developmental-behavioral pediatrics and began to ponder what other field in pediatrics would better serve me.
These thoughts turned into a sensation of shame as I sat at the dance and watched my father hurriedly attempt to mask his tears with a mumbled “there’s something in my eye” as he rushed off to the men’s room. What had become of my dreams? I had let frustration and fear turn my goals into regrets. When did I give up on my sister…and myself?
As I sat at the dance that night, I saw my future as a clinician who was happy at work but never truly inspired. I saw my sister’s experience becoming a secret I would keep. I saw myself forever abandoning any attempt to advocate for changes for the better for individuals with developmental disabilities.
And then I looked over at my sister on the dance floor. She was with my mother, and it was very clear that she enjoyed the music as she swayed in time to it. I realized that I was the one who had decided the situation was completely hopeless. Devon still keeps dancing.
My passion never died – I just became scared for the future. It is not easy, and I am not going to pretend that this essay should have a neatly packaged ending. My father did not come back bright-eyed, and we did not all dance joyously together as a happy, hopeful family. The situation is very difficult, but that does not mean I should relinquish my goals of advocating for individuals like Devon so that the future can improve.
I cannot cure my father of his tears, but I can try to do something that helps individuals like Devon.
Reprinted from AAP section on Developmental and Behavioral Pediatrics, Development and Behavioral News. www.dbpeds.org. SODBP Spring 2013 Newsletter.
Dr. Marisa Toomey will complete her Fellowship in Developmental and Behavioral Pediatrics at the Children’s Hospital of Philadelphia in June 2015.