Monday, November 29, 2010

'Would you like to have Down syndrome?'

By Amy Julia Becker

Our daughter Penny (above left) was born with Down syndrome almost five years ago. After the initial shock of her diagnosis wore off, we began to feel grateful – privileged even – to have a child with an extra 21st chromosome. Penny introduced us to a world of special needs and special people. She opened our hearts to a wider understanding of what it means to be human and what it means to see every human being as a gift.

Penny has a little brother, William (above right), who is a typically-developing two-year old. She has another sibling on the way, due in January. When I was pregnant with William, I often received comments about how good it would be for Penny to have siblings. To have role models, so to speak. And I often responded, “Yes, and how good it will be for Penny’s siblings to have her.” As a role model, so to speak.

In our culture, having a family member with a disability is often viewed as a burden. When I wrote a piece for the Motherlode blog of the New York Times (Deciding Not to Screen for Down Syndrome) about my choice not to undergo prenatal screening during this pregnancy, many of the comments implied I was a negligent mother: negligent to the child in the womb, perhaps, but more so to William. William, it was assumed, would shoulder the ‘burden’ of caring for his sister, and he would also shoulder the ‘burden’ of caring for his younger sibling should I give birth to another child with special needs.

And yet when I look at Penny and William together, I don’t see one child who’s a burden and one child who’s bearing the brunt of having a sister with a disability. Rather, I see Penny and William in relationship. There are some difficulties—Penny grabs her brother’s toys sometimes and pesters him with her foot during meals and talks to him in a stern voice if he disobeys. William has temper-tantrums and says “no” just to bug her and grabs her toys in return. Together, they are learning how to share, how to communicate, and how their actions impact other people. Penny has a little brother who will help her when her fingers can’t manage a fine-motor task. William has the privilege of growing up with a big sister who has more empathy than almost anyone I’ve ever known. He sees her scamper to get a cane for her great-grandmother. He hears her ask to pray for the little boy in her class at school who can’t walk. Perhaps he notices the look of alarm on her face now that my pregnancy has progressed enough that I struggle to get up from playing with them on the floor. He sees the look of concern whenever he cries and she rushes to his side: “Do you need a hug, William?”

In other words, Penny is already a friend and an annoyance, a role model and a sparring partner. Some of that is because she has Down syndrome. Most of it is just because she’s his sister.

But life will be harder for Penny, I suspect, as she navigates the challenges of a society that has trouble accepting her and often mocks the characteristics associated with her condition.

Despite all the limitations that come with Down syndrome, I continue to believe that Penny’s life is a gift, and that she has a positive role to play in our family and in our community.

I was talking about these things with a friend the other day, and I said, “Other people see it as a negative that Penny is in our family, but I see it as just the opposite. I often wish that I had grown up with a sibling with Down syndrome. I think I would be a different person, a better person.”

My friend replied, “But have you ever wished that you personally had Down syndrome? If Down syndrome is a gift, then is it a gift you would want for yourself?”

And I said, “The thought has never crossed my mind.”

At first, I felt guilty. In this hypothetical universe, why wouldn’t I want that extra chromosome? Some of my answer stems from the reality that life with Down syndrome is, in many ways, harder than life without. But some of it is that I’m content with who I am, just as I am content with who our daughter is. I wouldn’t add a chromosome to my genetic makeup, but I also wouldn’t take it away from Penny’s.

What I would do, however, is offer every individual who doesn’t have Down syndrome the opportunity to know and love someone who does. People with Down syndrome are often talked about in polarizing terms. They are either a ‘burden’ or they are ‘angels.’ Neither is true. People with Down syndrome are people. Many of them face medical, social and emotional problems. Many of them also exhibit an extraordinary sense of compassion and care for others. Will Penny be a burden to her brother? I doubt it. I suspect that she will be a blessing to him, that she will add great joy to his life even as she needs his help in aspects of her own.

So I’m back to where I started: grateful that Penny and William have each other, grateful that this new baby will have these siblings, and grateful that I have the privilege of knowing and loving each one of my children.

Amy Julia Becker writes about theology, disability, family, and culture at Thin Places.


It's so refreshing to hear someone with the same thoughts that I have. Our little miracle boy has just turned 3 and he's waiting for his little sibling to come along in May 2011. I'm not sure how he'll do not having Mummy 100% of the time, but what I AM sure about is how amazing he is and how positive I am that he fits into our family no matter how large it grows. Without him - our family isn't our family. It's someone else's. We've been blessed beyond words to have Jared as our son and can't wait to share this new bundle of joy with him.
Thank you for your insightful words.

When you wrote about how society sees people wtih Down Syndrome as "either a ‘burden’ or they are ‘angels’" it reminded me what my oldest said once when some one was talking about his baby brother who has cerebral palsy.
The person said "your brother is disabled" and my son who was around 6 or 7 at the time replied "no, he's a person" and I thought how wonderful his response is. In a world where everyone has to be labeled and fit into this neat little box, my son was growing up without that kind of 'disability'.

When did society begin to believe that taking care of a loved one is a "burden", as opposed to "a labour of love?" Furthermore, "Is this not why people chose or decide to have children?"

With this said, however, I am adult living with Cerebral Palsy and do understand the hardships that arise later in life. With this in mind, I can wholeheartedly say, "Asking for help is harder than receiving it." I also can tell you that not everyone is accepting of someone who has a disability, but there is a precious few who are. For instance, and as the story goes, my sister is only eight months older than me, as I was born prematurely. And, when I was two, my Dad took me to Greece to meet my grandparents. The next morning, after my sister awoke and realized that I was nowhere to found, she was crushed. The only thing she said was, "Mommy, where's Matthew?" After that "she didn't talk to our Mother for three days!!!"

Hence, I pray that every mother to be is forever blessed with the pitter-patter of little feet.

Yours truly,

Matt Kamaratakis

THAT..was just LOVELY and Spot on!

When our kids were in elementary school, we had another "Easter Seal" family over for a barbeque. Another sister asked my daughter: "What does your brother have?" Leah knew just what that meant, and she answered: "A hot dog"!

Absolutely, my daughter is such a joy. She loves to play already at just 6 months and makes me so happy, just as my son does. We as parents have a need to show others not tell them. I plan to have my daughter interact at with lots of kids and families everywhere, so that this generation of kids can grow up knowing just how normal kids with down syndrome are, and that they are a joy, just like kids. All children can and will have their moments. But, when you chose to have a child you agree to the responsibilities. Taking care of my daughter is just like taking care of my son.
All kids and babies are beautiful and wonderful and love us unconditionally. Parents are so completely blessed.

Hi my name is krystal and I have also down syndrome it was really diffcult for me to have the same disabiliy when I was adoped my fosters parents didn't know that I was having trouble with my words and writing skills and there is so much more to know about me I hope someone comments on mine bye guys

Hi Krystal,

You are very beautiful and brave for writing to everyone. Having a disability is hard sometimes, but you are just like everybody else. Never let anybody tell you that you can't do something because I know that you can. Continue to work hard on your words and writing skills, so we can hear all about you.

Your Friend,

Matt Kamaratakis

p.s. Don't worry about saying my last name. It's a mouthful even for me!!!