Down Syndrome: The Bigger Picture, A Better Dream

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. 

In early 2015, I became pregnant with our second child. Briefly, we were blissfully ignorant to the storm brewing just around the corner. Everything changed, though, at my 12-week appointment, when the cherished picture I had of our future began to slip from my helpless fingers. An early sonogram indicated a possible chromosomal abnormality. The evidence was just borderline, though, and my age, family history, and health all pointed toward a healthy, “normal” pregnancy. For peace of mind, we opted for the NIPT blood test, expecting the results to confirm our optimism. I’m writing this article, though, so I’m sure you already know this was not the case. 

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On the Friday of Mother’s Day weekend, just minutes before the workday ended, my phone rang. My obstetrician was on the line, and my heart sank at the realization that it was the doctor, not the nurse, who would deliver the results. I knew that could not be good, and I waited anxiously, though in my heart, I knew: my unborn daughter had screened positive for trisomy 21. 

Down syndrome. 

In an instant, the dreams I had envisioned for our family’s future crumbled in my hands, like hardened mud breaking apart at the slightest touch. Nowhere, in all of my dreaming in life, had Down syndrome ever entered the picture. I felt that life as we knew it had come to an end, and our days of “normal” were over. We moved forward in pregnancy, committed to our unborn daughter no matter her genetic makeup. We prayed desperately that our results were a false positive, yet as time progressed, the evidence stacked against us. All signs pointed to our daughter having Down syndrome. 

One of the hardest things I faced in that season was losing the ability to dream. Try as I might to conjure up some new new image of what our life could be like, I just couldn’t dream anymore. I felt very downhearted when thinking of what was to come. I had no experience with Down syndrome, only those misconceptions and stereotypes I’d acquired over my 32 years of life.

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Alisa Jane was born October 29, 2015. Her small ears bent at the top like a puppy dog’s, and her almond-shaped eyes eradicated any hopes of our screening test being a false positive. I cradled her in my arms, overflowing with love for her while also weeping for our new reality.

After a brief NICU stay, we packed our bags and journeyed home from the hospital. Without much fanfare, we found ourselves tasked with caring for two beautiful daughters, one whose genetic makeup differed radically from our expectations. In those blurry newborn days, I felt my way through exhaustion and grief like a traveller in the night. I could only see a few feet ahead as I slowly made my way in the dark. My fears for our picture-less future lay before me, with so many unknowns brought on by this extra chromosome, and I didn’t have time to dream of the future because the “right now” demanded all my energy and attention.

Yet in that dreamless, painful season, I discovered firsthand something I’d hoped would be true: Alisa wasn’t the mysterious being or unworthy hindrance the world asserts of “people like her.” Her existence didn’t usher in the end of our happiness; on the contrary, she helped us find a greater level of joy and fulfillment. She wasn’t lacking in any way, and I gave freely of myself to help our daughter thrive.

Through that personal growth, I’ve rediscovered my ability to dream again, but this time, my expectations for the future are vastly different than they once were. Alisa taught me a much deeper, better way to dream. Much to my surprise, Alisa — and the extra chromosome she brings with her — has made my life better.

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Those pictures I have for our future no longer depend so profusely on everything turning out the way I envision it. In fact, if I’ve learned anything since Down syndrome has entered our world, it’s that acquired wealth, professional status, material items, or larger homes won’t really matter in the end. But the people I’ve impacted, the lives I’ve invested in, they will matter a great deal. Life is best lived when we are giving ourselves away for the sake of another.

Down syndrome isn’t the dream-ender I once thought it to be. Down syndrome has slowed our pace, challenged our preconceptions, and inspired our dreams. It has expanded our community and deepened our faith. Down syndrome has changed our picture, and I’m so glad it did!

Inside Out, Upside Down: An Interview with Emily

Inside Out, Upside Down: An Interview with Emily