My son Cade is a survivor.
Eleven years ago this week, Rebekah and I celebrated the birth of our first-born. Despite his Down syndrome diagnosis, we were overjoyed to welcome this new life into our family.
But not everyone welcomes children like Cade.
It's no secret. People with Down syndrome have been targeted for extinction. In November, the New York Post heralded "The End of Down Syndrome" and profiled a new, safer test for pre-natal detection. Before this test was available, 92 percent of Down syndrome diagnoses (and many times false diagnoses) resulted in the mothers choosing to terminate their pregnancies. With these new tests, some experts foretell the end of Downs.
Why the rush to rid the world of people like Cade?
Certainly, it isn't because his disability physically threatens anyone. Rather, Down syndrome children pose a different kind of threat to society -- the in-your-face reminder that our aspirations for "perfection" may be flawed. People like Cade disrupt normal. Whether it's his insistence that everyone he says "hello" to on the busy streets of Manhattan respond in-kind or his unfiltered ability to hug a lonely, wheelchair-bound, homeless man without hesitation: people like Cade bring new dimension to what normal ought to be.
I've been encouraged to see several pop-culture venues putting on display just how normal children like Cade -- and the surviving 8 percent -- really are.
I was surprised and delighted when I opened a Nordstrom catalog a few months back and saw a young boy with Down syndrome posing as a model for children's clothes. No mention or special attribution was made of it. But there he was, hanging with a few other boys, included as one of the gang. The way things ought to be.
Then again, last month, dozens of major news outlets picked up this story line when the same young model was included in the latest Target ad campaign. One father and advocate, Rick Smith, took the story viral when he posted "5 Things Target Said Without Saying Anything" on his blog.
Only two weeks ago on the popular show "Glee," a16-year-old girl with Down syndrome was portrayed beautifully. Her character showed life as a high school teenager, a member of the cheerleading squad dealing with the pressures of modern teen life. During the episode, you could hear her internal thoughts playing out as the writers took a bold step forward in portraying how it might feel to walk in her shoes.
But these public displays of inclusion are only part of how we counter the extinction of those with Down syndrome.
Why do the majority of expectant parents determine not to carry these pregnancies to full term?
Fear.
Fear of the unknown.
Fear that life will never look the same.
Fear that they won't have what it takes day to day.
Fear that they themselves, won't be accepted.
We -- as humans -- feel ill equipped to handle life-altering uncertainty. If we could see the future, we'd do everything we could to keep things safe. Yet it also seems that when we can control the future, we don't do well. In the case of prenatal diagnosis, when we catch a glimpse of the predicted future, nine out of 10 times we choose not to permit the adventure of life with a Down syndrome child! We buy into the utopian lie that we know what's best for ourselves and for this world.
This is where community comes in. Mothers, fathers, family members and friends need each other to come alongside and encourage that the Creator has a full intention for this life. To use this story to challenge our understanding of what it truly means to be human. To dispel our temptation to control, preserve order and protect a superficial version of what a perfect family must be.
When our second and third children were en utero, Rebekah and I were highly encouraged to do prenatal screenings; but we politely declined. While we knew we had the highest odds of repeating a Down syndrome birth, it made no difference to us. A life was a life. On our worst days, we focused on the fear of the unknown. On our best days, we focused on trusting God to give us the strength to parent whomever's life we were about to be given the privilege of stewarding.
So, why should you care about a Down syndrome diagnoses? This isn't just about Down syndrome. It's about our understanding of the common good.
The historic definition of the "common good" is the most good for all people. But today this definition has a competitor called the "public interest." In this presupposed progressive view, the most good for the most people is all that matters. Only one word changed but the implications are enormous. A commitment to the common good demands we value the elderly, the disabled, the unborn and those unlike us. It's an old, rooted conception being lost on a generation consumed with progress.
We must allow life in our world that doesn't follow our scripted narrative.
We must have the courage to choose that which is good over what is convenient.
Our fellow citizens have fought hard to encourage and protect diversity and acceptance in our society. We wear political correctness as a badge of honor; but the rising statistics of pregnancies terminated after a Down syndrome diagnosis reveal the hypocrisy of our celebration. We see equality as sameness and diversity in shades of color. We embrace differences when they fall within our market-driven, politically correct framework but rarely when they disrupt our status quo. When a fetus is diagnosed with Down syndrome and the mother chooses not to carry the child to term, more is lost than her future inconvenience and fear. The world loses another soul in its greater body.
What would you do if you were faced with this challenge? If you had an unplanned pregnancy over the age of 35 and a prenatal test showed that your child might be a candidate for Downs, how would you and your spouse face this decision? Would you be open to a new kind of perfection? One that disrupts your current life, but that could bring a deeper meaning you'd never imagined. All this because you walked with courage into the unknown.
Cade's life, and those like his, offers an alternative view of the good life.
These individuals alter career paths and require families to work together.
They invite each of us to engage, instead of simply walking by.
They love unconditionally, asking little in return beyond a simple acknowledgement.
They celebrate the little things in life, and displace the stress that bogs most of us down.
They seem to understand what true life is about, more than many of us.
They offer us the opportunity to truly value all people as created equal.
Happy Birthday Cade! I'm so grateful that God let us be your parents. You've changed us in ways we would have never changed ourselves. You've given us permission to measure loving kindness over productivity. You've offered us a glimpse of God's grace while shattering our preconceived ideas of what is most important. We love you!
Additional Resources:
Rick Smith started the blog Noah's Dad when his son was born and diagnosed with Down syndrome. Furious over the immediate prescription of anti-depressants for his wife and the lack of credible information about what this diagnosis meant, Rick started video-blogging about every day life with his son. The Smiths want to give others a realistic glimpse into their world and relieve fear and share hope for those who may have a similar prognosis staring them down.
Justin and Stephanie Meredith run Lettercase. I had the privilege of working with them to create a booklet for parents and medical professionals called "Understanding a Down Syndrome Diagnosis." This beautiful book puts children with Down syndrome of all ages on display enjoying life with their family and friends and contributing to the good of their communities. Thousands of these books have been placed in the hands of parents desperate to know more about what their future holds when given a prenatal diagnosis.
I've read recently that the Little People also avoid testing, for fear that it will be used to wipe them out as well. Perhaps what we need to do is work on making our society one where tolerance is the emphasis...instead of fear, ignorance, and blame. But until that day, it would be nice if they could feel ok saying "Yes, I love my child...but sometimes it's too much" without fear of being judged. The resources for parents are shrinking all the time---with state budgets being cut left and right.
No one is saying don't love your children...but not everyone is you.
So please...a little empathy...for people who need it?
Why don't you take a look at the actual Downs populations? Why are these children abandoned and abused? Because not everyone has the wherewithal to parent these children. If you have the strength and the ability to do so, make that choice for yourself, but if you don't you shouldn't be judged or condemned for being honest and making the right choice for yourself and your child.
And for anyone raising a child today, even those without special needs, if the financial and emotional challenges are not "major concerns" perhaps you're not parenting right.
There aren't any children with DS who are abandoned and abused in North America. In fact, there are long lists of families who are waiting to adopt a child with DS or go abroad to adopt. If these woman carried their babies to term and lovingly gave them away to families that would like to open their hearts and lives to children with DS, then everyone wins. Woman who would choose not to raise a child with DS would not have to end a life, and families who want these children would have their lives enriched. I don't see a down side here.
2) I'm staunchly pro-choice, in case you're wondering. But in fact, prenatal testing was offered to us "So you can better understand your options before carrying a possibly defective pregnancy to term." Not my words -- those of the health care providers. And again, our choice was to deal with things as they came, knowing that we'd figure out whatever we had to figure out when the time came. Has nothing to do with anti-choice, pro-choice, or anything else. Just my 2 cents.
3) Wow. "Defects?" I don't think my son is special because of his "defects." I think he's special because of who he is. I think the point -- which you clearly missed -- is that if somebody had offered me the option of aborting him based on his challenges, and if I had chosen that option, I'd have missed out on knowing HIM. Not his challenges. HIM. This article, and my response, are about looking past the challenges to the children. I'm surprised you didn't get that.
Mom of 5 + 1 DS
As the single Mom of a 21-year-old son with Down
Syndrome, I applaud your posting. It is both genuine
and honest. It is not easy raising a developmentally
challenged child, but it is indeed worth it. My son is
absolutely wonderful, and I wouldn't change him for
anything. He is my world and has indeed blessed my
entire family with his unending and unconditional
love that he so freely passes around to all. He has
touched many in his path, even though he is not
very high-functioning. I, too, feel sad in some ways
that Down Syndrome could be eradicated in our
lifetime. Those with this challenge should be
celebrated instead.
God has truly blessed me with him. He is perfect
in every way imaginable.
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Sure he may not have needed you quite so much at 21, but are you serious suggesting that he'd have been any less if he'd been born the with normal complement of chromosomes?