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Celebrating World Down Syndrome Day

by Heidi Seward on March 13, 2019

March 21 is recognized by the U.N. as World Down Syndrome Day.  For those who may be unfamiliar with it, Down syndrome is a genetic condition in which the individuals affected have a third copy of chromosome 21, making 3-21 a natural fit for the day to raise awareness about Down syndrome.  I have never paid much attention to World Down Syndrome Day in the past. I was generally aware of the disturbing abortion statistics for unborn babies with Down syndrome, but I did not understand how staggering they are nor was I aware of the prejudice revealed by the statistics.  When faced with a Down syndrome diagnosis for their unborn child, most parents choose to end the pregnancy (for example, 67% in the U.S., 77% in France, and 98% in Denmark).  These high abortion rates suggest a broader devaluation of persons with Down syndrome.

My awareness of Down syndrome increased when Jonathan and I welcomed our daughter Elizabeth into the world last October.  About an hour after her birth, we were informed that she had Down syndrome. We went through a range of emotions in the days following her birth, mainly because a Down syndrome diagnosis comes with many other health concerns. In Elizabeth’s case, this necessitated a five-day stay in the NICU.  After it became clear that she was in good health, we had some space to process the Down syndrome diagnosis itself. Part of that processing involved going to Google to search the vast wasteland of internet opinions so I could prepare to navigate every potential circumstance I might face as the parent of a child with Down syndrome. I quickly became overwhelmed by my futile attempt to control the future rather than trust in the sovereignty of God.  All parents face unknown difficulties with their children, and to presume that I can prepare for it all, or to assume that parenting Elizabeth is necessarily going to be a more arduous journey than parenting any other child, is utter folly. I will instead do what any other sensible person does and face challenges as they present themselves.

 

Not long after receiving the diagnosis, we realized that grappling with a Down syndrome diagnosis was actually easier than grappling with some of the well-meaning responses to Elizabeth’s diagnosis.  For us, the diagnosis did not alter the fact that Elizabeth was made in the image of God, is fully human, and possesses neither more nor less worth than anyone else. On the other hand, the responses we received carried at times the tones and words of sympathy, condolence, and even grief over the perceived loss of some imagined version of our daughter.  We have been told that raising Elizabeth is going to be really hard. We have been told that we just need to love her. We have been told that Elizabeth will be a blessing. We have been told that parenting her will be a faith-builder. We have been told on numerous occasions that people with Down syndrome are just the sweetest people—they’re so happy all of the time.

I appreciate the well-meaning sentiment behind such comments.  Friends are expressing their concern for us and encouraging us that Elizabeth’s life still has value.  They are trying to acknowledge the reality that Elizabeth’s chromosomal make-up is not what it ought to be—a “creation subjected to futility” situation (Romans 8:20).  The fallen state of creation entails hardships for all of us. The problem, however, is that there really shouldn’t be any need to explain that Elizabeth’s life has value.  She’s my daughter, so I love her. She’s a person, which means that she is one of God’s image-bearers, which means that her life has worth.

 

My aim is not to guilt anyone for saying insensitive things—I probably have as much if not more guilt than anyone when it comes to saying the wrong thing.  Instead, I want us to consider the attitude beneath such statements, which might suggest a prejudice toward persons with Down syndrome as less valuable human beings.  Many of the stories I read of parents’ experiences in receiving their child’s diagnosis involve an initial feeling of utter hopelessness, followed by grief over the loss of the “normal” child they wanted but do not have, followed by further research into Down syndrome and receiving some renewed hope, followed by coming to terms with the child God gave them.  In other words, the stories are about parents overcoming their disappointment in having a child with Down syndrome.

Our main role as parents is to mentor and disciple our children so that they too may participate in the Great Commission and proclaim the gospel to people who desperately need it.

That disappointment likely stems from a flawed view of our children and their purpose.  We ought to see our children as begotten in the loving act of procreation—the bringing forth of God’s creation.  Our main role as parents is to mentor and disciple our children so that they too may participate in the Great Commission and proclaim the gospel to people who desperately need it.  Yet we often view children from the mindset of a consumer. It’s almost as if we think getting a child should be like going to a store and being handed a person who will fulfill all of our hopes and dreams.  If that person isn’t quite the model we were looking for, we are disappointed, whether at birth or in 30 years when that child has become someone other than the fictional perfect child we envisioned. We think about what our children can do for us and how they can enrich and bless our lives.  We consider ourselves to be successful parents if we raise successful children—and “success” is often defined in terms of intelligence, status, and/or money. We sometimes even slip into viewing children as our creation rather than as the gifts of procreation: we long to mold our children into miniature versions of ourselves and thus push them into the same interests and activities that we enjoy.  We are tempted to think of our children as “Me 2.0,” a newer and better version of my really amazing self. Essentially, we set our children on a pedestal and idolize them in lieu of worshipping God.

Thank God that the birth of a child with Down syndrome snatches away parental false hope for the “Me 2.0” child!  The destruction of false hope and false idols is an unequivocal good. My daughter is valuable because the God of the universe made her in His image—and she is fearfully and wonderfully made.  As a parent, my responsibility is the same toward her as it is toward my son: I am called to raise her to know, love, and follow Christ. My main hope and prayer for both of my children is that their lives would bring God much glory.  Elizabeth is fully capable of living a life worthy of the gospel of Jesus Christ, and in that truth I rejoice and hope.

On this World Down Syndrome Day, here are just a few simple things to consider as you meet individuals with Down syndrome and interact with the parents of children with Down syndrome:

 

1)    If your reaction to a person with Down syndrome or the parent of a child with Down syndrome is pity, consider why you have that reaction.  It’s okay to feel pity because you recognize that that person or parent may experience some unique difficulties. It’s a problem if the pity stems from a belief that that person’s life (or parent’s child) is less valuable than that of a “normal” person.

 

2)    When you don’t know what to say, listen.  Ask questions. Try to understand rather than leaping to insights, giving advice, or projecting your feelings onto that person.

 

3)    Celebrate God’s good creation.  Like any other person, a person with Down syndrome is a good creation of our Father’s and worthy of celebration.

If you have questions about Down syndrome, here is a helpful link with more resources to learn basic information on Down syndrome, myths vs. facts, and preferred language: https://www.ndss.org/about-down-syndrome/down-syndrome/.  Of course, you’re always welcome to ask Jonathan or me questions!




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