All in When God Says No

Down Syndrome: The Bigger Picture, A Better Dream

Each of us, I think, has a picture in our minds of the way we hope life will turn out. We could describe these snapshots in any number of ways: dreams, plans, aspirations, desires. Our days are spent reacting to life as it unfolds and adjusting those images to incorporate any new information, surprising developments, or obstacles that come with living in this sometimes unpredictable world. 

For the most part, we’re able to keep any reasonable picture of the future intact as we plod along on our life journeys. Sometimes, though, an uninvited change comes along, drastically distorting the image we’ve held dear for our future. Before we know it, the unexpected has crashed into our reality with all of the impertinence and audacity of an unwelcome house guest. 

Over the past six or so months, many of you have followed along and even walked with us on a very painful and very personal journey. In the beginning of June, Trey and I chose to publicly share the newsthat our unborn daughter had screened positive for Down Syndrome earlier in my pregnancy. What began last March as an exciting and "normal" pregnancy rapidly turned into a high risk and unpredictable pregnancy as complications arose. I was eventually hospitalized for nine weeks in order to allow our daughter Alisa the greatest chance for growth, health, and a full-term stay in my womb.

The morning before my induction at 38 weeks, I sat for the last time alone in my hospital room on the antepartum floor. Later that day, our family would fly in to join us as we prepared to welcome Alisa into our arms. Trey would come that afternoon to stay with me for the rest of our time at the hospital. As I searched my heart and feelings, I found myself facing a question that had surfaced many times throughout my pregnancy:

What if God says no?

"Do you have faith that this test could be wrong? Mustard seed faith. That's all it takes."

When Trey and I first received news that our unborn daughter had screened positive for Down Syndrome last May, my obstetrician referred us to a high risk doctor for a level 2 ultrasound. The appointment was scheduled for two weeks later, and during that wait, we experienced quite a range of emotions. We were steadfastly committed to this life the Lord had given us, but we also grieved the loss of that "normal life" and many dreams we had for our child. We learned what we could about Down Syndrome, and we saw many misconceptions fall away to the reality that it wasn't the end of the world as we knew it. We also researched about the NIPS screening test that had told us our daughter screened positive for Down Syndrome. We found hope that, while the diagnostic rate is high, it is not a 100% positive test that she will in fact have this disorder. There are cases of false positives.  

"All three of us agree that you need to be admitted to the hospital today."

Trey and I sat quietly in the tiny sonogram room, listening to the nurse practitioner as she informed us that our MFM specialist and obstetrician agreed with her that conditions had developed to the point of needing continuous monitoring at the hosptial. A sense of numbness and shock came over me as events unfolded. Was this really happening? We received our instructions, gathered our belongings, and made the short drive over to the hospital.

As we walked into the hospital, several thoughts collided in my mind. Will they have to deliver Alisa early? How will Trey manage Kate and all the responsibilities at home? How will Kate do being away from me like this? How will I handle being away from my family? We arrived on the 7th floor to check in. 

"Hello, we were told to come over here..." Trey began.

The voice spoke out of nowhere, catching me completely off guard. I had been communicating with other moms on a private down syndrome support group when one mother's update on her newborn daughter, who also happens to have Down Syndrome, appeared on my screen: "We are now facing the possibility of leukemia." That ugly word stared me in the face, and I recalled reading earlier in my pregnancy that children with Down Syndrome are at an increased risk of developing leukemia. Yes, leukemia.

Leukemia? In a brand new baby? That hardly seems fair.