Melanie McLaughlin Perkins is the mother of Grace, a girl born with Down syndrome and a heart defect, who has been receiving care at Children’s Hospital Boston her whole life. In the following post Melanie shares her thoughts on “Monica and David,” a new documentary following the lives of a young newlywed couple, both of whom have Down syndrome. Based on popular demand the program will re-air tonight on HBO2 at 8 pm.
In May of 2007 life was moving along perfectly. We had two healthy children, a girl and a boy, a beautiful home and a loyal golden retriever. I was celebrating a pinnacle in my career. Like I said, everything was perfect.
But I had a secret. I was almost 12 weeks pregnant with our third child. Only my husband and I knew. We went in for our 12-week ultrasound mostly, we thought, to see the baby’s heartbeat. Suddenly we were overwhelmed with information about nuchal translucency and percentages and ratios. We were told there was a possibility our child might have Down syndrome or a heart defect. I distinctly remember praying it would be “just a heart defect.”
Clearly, I had no experience in matters of the heart – in so many ways.
It has been nearly three years since our daughter, Grace, was born with both Down syndrome and a heart defect. We were so fortunate to live outside of Boston, just 10 minutes from Children’s Hospital Boston, where she could receive all the care she needed. Thanks to the medical team at Children’s, Grace’s heart was repaired when she was 2 months old and weighed barely 8 pounds.
The other night as I sat watching the award-winning HBO program, “Monica and David”, the story of a couple with Down syndrome and their love for each other, I understood just how much having Grace in our family has healed all of our hearts.
When we received our prenatal diagnosis my husband and I had no experience with anyone with Down syndrome. We struggled with the decision of whether to continue our pregnancy. What about our other children? Would our child with Down syndrome be able to live a fulfilling life? What will happen to her when we are gone? Will our marriage survive?
As we struggled with our decision, I remember commenting that my husband thought we would be taking the person who bagged our groceries home from the hospital. We had never looked at the person who had bagged our groceries – the person who had Down syndrome –as someone’s son, or brother. We hadn’t noticed how that person, that beautiful human being, worked twice as hard to do so many things other people take for granted. We didn’t realize how fortunate that person was to be employed. Instead we looked away, pretended not to notice. We hurriedly paid for our groceries and never looked back.
As I sat watching Monica and David, I realized how much we had changed. Where there was once ignorance there is now understanding, acceptance and, yes, even celebration. Before we had felt only deep despair, but now there was hope and laughter. Thirty years ago parents were told children with Down syndrome couldn’t read, so they were never taught how. Today people with Down syndrome, people like Monica and David, go to college, get their license, get married.
I found myself laughing with understanding at the way Monica complained when David folded the laundry. I cried when David tenderly comforted Monica over her father’s abandonment. I worried when Monica’s mother was overprotective and unwilling to let her work among society where she might not be treated well.
And I thought of my own little girl and how just a few weeks ago I cried for hours after her first full day of preschool. I couldn’t help feeling like I was putting my wounded little bird out of her nest and was hoping the world would be kind to her. I understood Monica’s mother’s pain as she shared both the humanity of their story and the reality.
Perhaps most of all, when I watched “Monica and David” I realized I am not alone. I share the same hope and fears many parents do. Like so many parents, what I really want is for my child to live a happy and fulfilling life: to love and be loved. But, because life is what it is, there will be trials along the way; that is not unique to Down syndrome. What is unique is the way our children are treated by others. If people are able to look beyond a chromosome and see Monica, as a newlywed learning to cook with her new husband, or David, chatting about his favorite sports team or tenderly comforting his wife, the world becomes a better place.
Monica’s first cousin, Ali Codina, made the film to share Monica and David’s story with the world. Codina said some treated Monica and David’s wedding as a “cute gesture.” But she saw it as “something very powerful, very serious and very adult.” As the mother of a 2-year old with Down syndrome, Codina’s film confirms what I have suspected since Grace arrived. We will continue to have all the hope and expectation for Grace as we do for all of our children.
Thanks to Monica and David, we also have the hope that, someday, our Grace will find her own David.
Melanie, Grace and their whole family are not only an inspiration, but part of a large Down syndrome community leading active and productive lives while striving for the respect they so richly deserve. The following are but a few of their stories.
Out of the Shadows: A collaboration between Children’s Hospital Boston and the Boston Ballet, the Adaptive Dance Program puts kids with Down syndrome on stage where they can dance together, twirl, twist, laugh and beam with pride.
Children’s newest star player: Meet Ben Majewski, Children’s Hospital Boston’s Down Syndrome Program resource specialist.
Obama signs Rosa’s Law: Mirroring a Massachusetts law passed earlier this year, President Obama recently signed Rosa’s Law, mandating the removal of the terms “mental retardation” and “mentally retarded” from all federal education, health and labor laws and replacing them with the words “intellectual disability.”
The bill was proposed because many Americans feel after years of misuse the word ‘retarded’ now qualifies as hurtful speech.