January 25, 2017
A week ago today I stared for the first time into the eyes of our fourth daughter, Catherine Lee, who emerged into the light of the world at 3:15pm. And in the face of that beautiful innocence we received finally and unequivocally the confirmation we had been contemplating, awaiting and lifting up in prayer for the last six months of Jessica’s pregnancy. Until now, only a select few people knew what we had discovered only by accident – but now that she is here, it’s time to share it.
Early last year I insisted to Jessica that we engage a company called Harmony for one of their new blood tests that determines the sex of a baby in utero as early as eight weeks. Those closest to us know that, with three daughters and one very Type-A father in our family, my undeterrable need to know whether I would finally get a son necessitated the latest and greatest technology. So we did just that.
Six months ago while on vacation in Colorado after waiting impatiently for a week, we received the fateful call. I was outside playing with the kids when Jessica answered the phone. As I peered at her through the window, I discerned who was on the other end and by the look on her face, one of quiet acceptance, I inferred that we would be having yet another girl. I had already resolved to take the results with determined joy regardless of the outcome. But what I did not know about the call became the subject that would consume the rest of our vacation. Jessica had only to contemplate how to break the news to me in the least impactful way.
It took her two days for that contemplation. So when she observed later that week that I was at a slow point in my work — yes, I work while on vacation — she decided it was now or never. I was sitting in an overstuffed leather chair in the living room when she walked in and quietly sat down in front of me on the ottoman, clearly expecting to have my full attention. She put it plainly, without any undue fuss (I am notorious for wanting the bottom line first and details only if I ask for them), “There’s something we need to talk about.”
It was clear in the look on her face and in the tone of her voice that my only appropriate response was to close my laptop immediately and focus very intently on her next words. Naturally, my brain was searching the cosmos for some contextual clue that might give me the slightest hint of what might be coming so as to prepare myself. No such luck; my wife has an excellent poker face from many years of playing card games with her family as a child.
She proceeded slowly and with a metered pace, “On the call from the doctor’s office the other day, it was actually Dr. Lewis who called me, which was odd for something as routine as a sex determination.” I braced myself at those foreboding words which screamed that there was more, much more. She continued, “The blood doesn’t just test for the sex of the child. It also scans for a number of conditions and illnesses. And our test came back positive…for Trisomy 21.”
I had a look of disbelief on my face as I was fairly certain my recollection was accurately associating Trisomy 21 with its more commonly known name. She confirmed my suspicion, “Downs Syndrome.” I fired back, “How accurate is the test? How certain are they?” “95%,” she replied with reluctance.
I buried my hands in my face and took a deep breath in hopes the rush of oxygen to my brain might aid in managing the myriad thoughts and emotions racing through my mind. All of those thoughts kept coming back to one single, unanswerable question, “Why, God?”
A sense of betrayal arrested me as I struggled to come to terms with this new reality that, not only was I not getting the son for which I had hoped and prayed fervently for weeks, we would be getting a child that I knew well enough would come with a set of health challenges that would change our lives dramatically and in ways we never would have hoped for and for which we could have never easily prepared. It was a double-punch to the gut.
The inescapable truths of this revelation pierced me. I knew now that there would be countless joys in life we would not be able share with one of our children. It may be unlikely, depending on the severity of the syndrome, that I would have the privilege of walking her down the aisle. It is possible we may never have the opportunity to counsel her on which college she should attend. It is almost certain we won’t one day enjoy grandchildren from each of our daughters. These and so many others accompanied what I knew probably would be untold days, weeks, months, even years of medical care and counsel to compensate for what would be a less than ‘normal’ life.
Those concerns, we would later learn, only are harbored by 40% of parents to children with Downs Syndrome because at least 60% of babies discovered in utero with DS are aborted. That is a profound tragedy, regardless of any questions about quality of life. That was the one single question in our conservation that day which required no discussion. We resolved, through our mutual anguish, that we would honor and cherish this life in my wife’s womb and make the best of whatever God had planned for us.
With that renewed resolve, I fought that day through the mental defeat to a conclusion of determination and purpose. We would educate ourselves and make whatever God intended in this new journey into our mission, not just to prove to ourselves that we could but equally to demonstrate to others that there is in fact a purpose in it all, that all life is sacred and deserving of joy in the world.
Soon after I gathered myself together, I pecked a short text message to a dear friend from college who I knew was several years ahead of us on that journey with their youngest son born with Downs. We talked later that day about what to expect and what life with Downs would entail and what it would not. He opened my eyes to the beautiful reality that is life with Downs Syndrome. Children with Downs, he explained, are some of the most joyful people you will ever meet. They attack life with an insatiable curiosity, wonder and amazement in ways that really should give us pause when we get caught up in the most trivial frustrations of life.
Despite the health challenges that will surely come, in one way or another, Downs Syndrome for parents becomes its own blessing in a way that can only be understood by them. They experience joys that are unique to their situation. They, along with their other children, experience in ways most often never known by the rest of the world a depth of compassion, empathy and self-sacrifice that will train them in virtues so sorely missed in this fallen world.
As we approached Catherine’s birth, we continued learning more about this new journey. We affirmed each other with a most appropriate analogy. This pregnancy was like a trip planned to Rome, complete with all the necessary travel details, sites to be scene, places in which to stay and so forth. But after all was planned, our travel agent called and inform us that our destination had been changed, inexplicably so, to Prague. After the initial shock subsided, we resolved that this new destination would bring its own itinerary including unique sites, features and joys. These would not be lesser than any we would find in Rome…just different.
As I pondered our newfound future and what God might have in store for us I was reminded when Christ rebuked his disciples after they wondered aloud ‘who is the greatest in the kingdom of God’. His answer was stark, “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven. Therefore, whoever takes the lowly position of this child is the greatest in the kingdom of heaven. And whoever welcomes one such child in my name welcomes me.”
Downs Syndrome children and ultimately adults, like no other, have as their nature a perpetually child-like innocence in which they approach the throne of God with submission, belief and faith…simply because He asks for it. In that, they teach us all in ways that render a theological treatise on practical virtues as mere sophistry in comparison.
And in that realization, as we cradle our now one-week-old, beautiful daughter, we may after all come to conclude what is surely the answer to that earnest “Why?” Our mission, our ministry now must be to give our all in raising this precious creation of God that she might be a better angel to which we may look as one among so many of her kind that point us to Him and to His infinite wisdom, love and glory.
Ad Maiorem Dei Gloriam | Thy Will Be Done