Down Syndrome: When "the End of the World" Really Isn't the End
"You have turned my mourning into dancing; you have loosed my sackcloth and clothed me with gladness..." Palm 30:11
It was about a year ago, now, when we first learned that there was possibly something wrong in my pregnancy. On that sunny Friday morning in April, I traveled to Dallas alone for my 12-week pregnancy checkup. Trey stayed home with Kate, and I was looking forward to eating at Chuy’s by myself after the appointment. It was to be a routine checkup, but it became very un-routine when when my obstetrician couldn’t find the baby’s heartbeat. We walked two rooms down to have a sonogram performed. Once the sono tech placed the wand on my gel-covered abdomen, I was quickly relieved to see the screen light up with life. My relief did not last long, though, for in a matter of moments, both my doctor and the sono tech were discussing with me nuchal translucency, genetic testing, and a possible chromosome abnormality.
I left that appointment troubled, but still hopeful. Surely nothing is wrong, I thought.This type of thing doesn’t happen to me! However, on the Friday afternoon before Mother’s Day, when I was just 14-weeks pregnant, my obstetrician called to inform us that our unborn baby (a girl!) had screened positive for trisomy 21. This meant that we could assume with very strong statistical accuracy that our baby had Down syndrome.
In an instant, it felt as if the light was snubbed out in our happy little lives.
I felt two important emotions in the immediate moments after that phone call. First, I felt the undeniable love of a mother for our unborn daughter. We had never considered termination of the pregnancy as an option, and we weren't considering it now, either. Second, I felt the undeniable grief of a mother for our unborn daughter. I felt as if this news had undoubtedly brought us to “the end of the world" as we knew it.
As I said earlier, we are just a year removed from those initial days of overwhelming struggle and sadness that drifted throughout my pregnancy with Alisa Jane. We put forth much time, energy, and financial investment in getting Alisa here safely and in keeping her healthy. In the end, that included a nine-week hospital stay, with bed rest and NICU time involved. Today, Alisa is now here in our arms, with her squishy cheeks, her melodic coos, and her endearing personality; I can tell you that she is worth every single element of sacrifice and investment.
As I hold my baby now and remember all too clearly those familiar feelings of sadness and fear, I feel compelled to encourage any who find themselves in the beginning stages of learning their baby has or might have Down syndrome.
You see, I have discovered. through my own experience and through the stories of others, that having a baby with a birth defect, a disability, or some other life-altering or life-ending medical problem in the womb, does not mean that life is over or “the end of the world” has come. Of course, there have been times over the last year when I have honestly felt that our world was over. We certainly have had a year of extremely high “highs” and extremely low “lows” on this journey. Even still, the end of the world has not come for the Holmes family. In fact, those moments of our deepest grief and heartache over Alisa’s diagnosis absolutely pale in comparison to the greatest joys we find in her life.
I have found that “the end of the world” really isn’t the end of the world.
If I could sit down and talk with any family who is facing a high risk pregnancy or a birth diagnosis of Down syndrome, those would be my words to you. Down syndrome is most certainly not anything close to being the end of the world! I am not saying it is always easy, but no worthy pursuit in life is ever easy. There are days when waves of grief still rock my heart, though they come fewer and further between now. I still shed broken tears over the struggles my daughter has or might have as a result of her extra chromosome, yet even those tears come less and less. I have already seen in these four months she’s been in our arms that we will know a greater joy and a richer life because of Alisa Jane.
A pro-life argument I often hear in cases of birth defects and other terminal/life-altering diagnoses in the womb is this: "What if the doctor is wrong?" I think I've even said that before to others. I heard that frequently while we waited for Alisa’s birth, as many shared experiences of being told their babies likely had Down syndrome. In the end, they said their children came out “normal.” Sometimes, the argument goes, the medical community is wrong, so why abort a baby who might be “perfectly healthy and normal”?
But now I have a different perspective, and I ask these questions: “But what if the doctor is right? Isn't that life still valuable, even then?" In our case, the doctors and the screening test were 100% correct. Alisa has Down syndrome. That, however, does not change my mind on the value of our daughter’s life. I think it's okay to acknowledge the heartache and pain that comes when a baby emerges from the womb with medical issues, while also still acknowledging that his or her life is valuable and worth living. In fact, we will find that those lives we fight for are the ones who bring even greater value and meaning to our own lives.
The beauty of it all is that this place where pain and self-sacrifice meet, that is where character is born. In fact, it is in these times where we feel "the end of the world" has come that our character either lives or dies. Choosing the harder road when you know it will greatly alter yours - that is a noble and honorable thing. We live in a culture that heralds comfort and ease. We all face the daily challenge to have more, to do more, and to be more, as these are the messages that drift throughout our days. But at the end of our lives, what will we have to show for ourselves? Stuff? Money in a bank account? Full bellies and clothes that were once in fashion?
Or will we be people of character? Will the world be able to say of you and of me, “Now that, that was a life not wasted”?
I look at Alisa, and I am reminded that there is nothing greater in life than giving myself away for the sake of others. In fact, the clearest demonstration of this truth is found in the example of Jesus Christ, who gave His very life away for the sake of humanity. He sacrificed His all so that you and I might have the opportunity to choose life…eternal life.
One year removed from the time I felt like the light was snubbed out in my tiny corner of the world, I can tell you that the light of Christ shines more brightly than ever in my life because of our journey with Alisa Jane. Down syndrome certainly has not been the end of our world; if anything, this journey has brought us into a place of deeper and better living. The same can be true of you, too, no matter what challenges or life circumstances you might be facing. And maybe in time, you, too, will be able to see that “the end of the world” really isn’t the end. Even if the doctor is right, even if the tests are correct, and even if it means you will walk a road of great heartache, personal sacrifice, and pain — even still — the world is not over.
May the love of Christ shine more brightly in all of our lives today because of the challenges, the joys, the struggles, and the triumphs.