Reflections on “Monica and David”

by Boston Children's Hospital staff on November 3, 2010

Grace

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.

Grace and her siblings Ryleigh and Aiden

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.

4 comments

  • Bryan_farrow

    Terrific documentary. Aside from shedding light on the vast potential of those with Down syndrome, it provides a touching and instructive look at marriage done right. Talk about partners with maturity and empathy.

  • WatkinsMomma

    as a grandparent of a downs syndromne little boy,I found this very interesting,I also work in this field and enjoy watching every little accomplishment they make.I think every person out there should watch this as it is a real eye opener for those that don’t know much about this subjectand hope for those that live with it everyday

  • Monica’s mother

    Hi Melanie, I am Maria Elena, Monica’s mother and David’s mother-in-law. I have read many, many articles, blogs, etc., about “Monica and David” since November 2009, when the documentary made its world debut at the International Documentary Festival in Amsterdam. Many have touched my heart, some have made me angry when parents of other DS children criticize me for being “overprotective”, as I guess they feel they “know” me after seeing me on the screen for maybe 10 minutes. They feel they can judge the decisions I have made, together with Monica, and that in 68 minutes, 38 years of struggles, pain and mostly joy can be summarized. However, YOURS is the first article that made me cry. You describe exactly how it is out there, how most people in the world look right through people with DS, especially adults with DS, as the little ones are so cute. But once they are no longer “cute”, people do what you and your husband did: see them in public and stare at them, but don’t take the time to SEE them as people or to get to know them. In our case, when Monica was born I was told to put her in an institution and forget about her, as she would never walk or talk and I was too young to have such a “burden”. There was nothing in the form of support, etc., and there was no mainstreaming in school, especially in Florida. As a result, she attended special ed classes, etc., etc., etc., so to take her from a sheltered life that was forced upon us due to lack of options and drop her into the world of a supermarket is easier said than done. I think of it as no different than literally throwing your child who has never before swam in the water and hoping he will survive while you walk away. But parents of younger DS children have called me overprotective because they are lucky; their children have been born in a much-welcomed different era, where there are many more options for DS children, and they are mainstreamed practically from birth. The funny thing is that neither Monica nor David WANT to work in a supermarket; when David mentions working there, you will hear in the scene above as we are entering the elevator, that I say “first I heard of it”. But the decision to not work at a market was theirs, because even though his mother, in the film, says she would not want him to work at “that supermarket”, she would support him if he really did want that. However, because of the world THEY were born into, resulting in segregation, we would prefer to find a work opportunity in an office-type environment where they can be “eased” into dealing with the inherent cruelty of the outside world that they have not really lived in. You made me cry because you honestly expressed that you never looked twice at a DS person before your lovely daughter was born, and how she has changed your hearts. The goal of the documentary is precisely that, to change other hearts, those whose lives have not been directly touched by DS, and get them to understand that people with DS are no different than they are, and that they deserve to be seen and not just stared at. For you and yours, I can guarantee that your hearts will never be the same, because the love you will receive from Grace forever is the most amazing love you will ever know. Trust me on that! Wishing you the best!

  • Ziggy’s Mom

    What a touching review, written from the heart. Like the author, I smiled when Monica reprimanded David about the way he folded the laundry. I do that to my husband as he’s laundry-challenged as well! There is hope and laughter after the diagnosis. As a mother of a child with T21 I can attest to that. Our kids will face challenges in life like all children will, but the greatest challenge of all is the way they are treated by others and misconceptions that come with the label “Downs”. I hope this film will help allay some of this, and help others see individuals like Monica and David as human-peers.

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