How My Troubling Sonogram Became a Remarkable Blessing
The sonogram tech’s face fell. “I’ll just get the doctor,” she said in an artificial lilt that didn’t fit her somber expression. She left the room a little too fast. I knew right away something was wrong. What did she see in that blurry picture on the monitor? To me, the amorphous yet recognizable image of a baby looked perfect. I already loved him.
It was my first prenatal checkup. My husband, Ray, wasn’t with me because he was busy at work and we fully expected it to be a routine exam. But when the doctor finally came in, I knew it wasn’t routine at all. She gravely scrutinized the sonogram screen for only a few moments before she evenly asked me to come to her office. Suddenly, the room seemed smaller, quieter and less safe, yet I felt a strange sense of calm.
“Your sonogram shows several markers for a genetic defect,” she reported, businesslike. She went on to explain the alarming possibilities: Trisomy 21, Down syndrome or Trisomy 13, sometimes fatal… or just maybe, she hesitated, no problem at all. The obstetrician quickly covered the options — further genetic testing, abortion. Her detached, professional tone was oddly comforting, insulating me from my own surging feelings.
Terminating was not a choice for us, and given our convictions, we declined genetic testing to confirm a diagnosis. It wouldn’t make a difference. But the next six months were hard, especially for me, convinced our baby boy indeed had Down syndrome. Ray was less concerned, skeptical of the doctor’s suspicions and as a deeply faithful man, peacefully trusting God with any possible outcome.
Truth was, my heart already knew. I even believed I’d been prepared from childhood to welcome this baby. Despite a family that prized intellect and achievement above everything, I’d always had an inexplicable sensitivity to the developmentally disabled, uncharacteristically confrontational if someone used the word “retarded” offensively. I’d faced many challenges in life, including caring for my mentally ill mom, which had made me resourceful and strong. I’d always felt different myself and had learned to embrace that, concluding that in fact, we are all different by design.
The next months were tough. Yet in that time of waiting, I had unexpected, comforting encounters with people with Down syndrome — a friendly grocery clerk, a happy family at the park, heartwarming segments on the evening news, endearing YouTube clips that somehow made their way to me, unbidden. All seemed guided by an unknown loving hand to reassure me. Even so, I was afraid, confused and sometimes angry.
I was afraid for my unborn child and what he might face in life: Would he suffer physically? Would he be ridiculed and rejected at every turn? I was afraid for my older son, Pierce: Would he be overshadowed or saddled with a lifelong burden? I was afraid for our family: What would this baby do to our hard-earned harmony? Admittedly, I was maybe most afraid for myself. I didn’t see myself as the mom of a disabled child. Who would I be?
When our son finally arrived and the diagnosis was confirmed, my world seemed to fall apart, despite my preparations. We’d decided to name our new son Isaac — “he laughs” in Hebrew — which now seemed like a leap of faith in and of itself. For the first few months, I struggled with what felt undeniably like profound grief, a palpable and agonizing sense of loss and pain. The loss of a dream of some idyllic future— one I couldn’t really predict in any case. Does anyone of us know how our kids will turn out?
Deep down, I knew I was heavily saddled by fear of the unknown. As I navigated the complex feelings of those early months, I made conscious choices that helped. I stayed away from books brimming with ominous predictions. I focused on mundane, daily tasks: changing diapers, working, cooking dinner. I connected with other special needs moms for whom family life seemed as busy, happy and just plain ordinary as any. I prayed. A lot.
Light does come in the morning. As is so often the case, what at first seemed a tragedy has turned out to be a remarkable blessing. In the nearly four years since Isaac’s arrival, I’ve learned lessons that transcend this circumstance to apply to every area of life. Some lessons are new. Some are repeats which I still needed to learn.
Slow down, enjoy life, laugh, love and be loved. Isaac’s languid development has allowed me to relish every milestone in a way I simply couldn’t do with his big brother, who develops with the lightning speed most parents lament. Isaac’s enthusiastic and attentive enjoyment of the smallest pleasures has encouraged us to do the same. Above all, it’s his unprejudiced, guileless and abundant love (that extra love chromosome 21) that brings joy to everyone he meets. A love that melts glaciers and revives the dead. He is our ambassador of love.
Seeing Isaac as simply delayed is simplistic. As a friend says, “It’s just another way of being.” Having said that, it is true raising a child with Down syndrome involves some unique challenges, many of which can’t be fully anticipated because of the wide and unpredictable range of abilities and possible health conditions. Even so, as any parent of any kid can testify, it is mostly a unique privilege to help meet some of Isaac’s special needs.
Far from being ostracized, Isaac attracts loving attention wherever he goes. He is a rock star in our little town. Pierce? Well, he’s a typical big brother — at times loving and doting, at others openly annoyed by Isaac’s intrusions. Our marriage and family have coalesced, forging stronger bonds under pressure. And me personally? I’m blossoming as a person and a mom, this experience exalting some of my better traits and tempering some of my failings. And there’s more.
There have also been some tangible rewards that reach far beyond our family. This spring, I got state economic development funding to start a special needs product company, MightyTykes (www.MightyTykes.com) to manufacture and sell tiny weights that are helping kids with a lot of different conditions and giving us a platform for our message that we are different by design. The Associated Press even picked up our story, garnering coverage all around the country.
In retrospect, I see that choosing to have Isaac was a brave thing to do. And like many acts of bravery, it’s proven to be immeasurably rewarding and has emboldened me in every area of life. I now view the horizon with a sense of hopeful anticipation, more confident than ever before that circumstances (and I) can be transformed. Isaac has opened up brave new vistas of possibility for me and my family.
Today, it’s difficult to remember those terminal feelings I had around Isaac’s birth. Far from crushing my hopes, embracing Isaac has given me new hope about what God can accomplish with a simple willing participant in life. I cannot wait to find out.
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