Six words changed my entire life: “Down syndrome is your best case scenario.”
Those were the doctor’s words at my 20-week ultrasound. As we studied the monitor and watched the baby inside of me squirm and wiggle, the doctor pointed out the enlarged ventricles on the brain, the multiple defects in the formation of the heart, the lack of a nose bridge, the small limbs. Down syndrome was now our best-case scenario, because our first child’s condition was most likely “incompatible with life.”
An amniocentesis and three excruciatingly long days later, we received confirmation of the diagnosis. My prayers had been answered. Amidst the overwhelming fear and grief was relief and gratitude. It was only Down syndrome. It could have been so much worse.
It’s amazing how perspective changes everything.
Our daughter Lily was born four months later. The doctors had done their best to prepare us for the worst. We expected her to be premature. She would be tiny and blue because of her heart defects, unable to breath on her own, and would be taken immediately to the neonatal intensive care unit.
But Lily arrived two days before her due date. She weighed more than eight pounds and was bright pink. She not only breathed on her own, she screamed and cried like any other newborn. And after a swarm of specialists examined her, the nurse handed her to me. I held my child within minutes of her birth, looked into her eyes for the first time and told her “I love you and I’m so glad you’re here.” Under other circumstances I would have had hours to nuzzle my newborn. I only had a moment, but it was more than I ever expected.
This year Lily entered kindergarten. Over the past five years she has continued to amaze us, proving that with patience, determination and courage, she can achieve almost anything. But imagining her in a classroom with 24 other children, none of whom have a disability, brought only fear and grief. Would she make friends despite her social immaturity and unintelligible speech? Would she be avoided because she grinds her teeth? Would she be teased because of her odd behaviors? Would the teachers have patience with her processing delays? Would she be part of the class or just a child who sits to the side and observes the “typical” children as they play and learn? With each question came worry, weighing me down and disabling me.
I spent days consumed by fear and worry, realizing that kindergarten was the start of the rest of her life.
And then I received an e-mail from a friend whose daughter is 3 and also has Down syndrome. Unlike Lily, Ashley’s biggest challenges are not social or academic. She has battled leukemia for more than a year. Her mother wrote about the sadness she felt because Ashley’s hair was falling out again; she’d been so excited when it had finally grown back. Suddenly, Lily in kindergarten was no longer a source of worry. She wasn’t in bed at home too weak to go to school or play with friends. She only has Down syndrome. It could be so much worse.
As I dropped Lily off at school recently, I watched as she lined up with her class. One girl called out, “Hi Lily!” Other children yelled, “Lily! Lily’s here!” A few others rushed over and hugged her. All 24 children greeted my daughter as if she were their best friend.
I know I will continue to experience fear and grief throughout Lily’s life. I will feel sadness every time she faces an obstacle that only exists because she has Down syndrome. I will worry that the day will come when other children don’t race to greet her each morning. But I will also be forever grateful for each challenge that allows her to achieve great success, for each relationship that strengthens her character, for the opportunity to be her mother.
If I focus on the gratitude, I can get through the fear. After all, it’s just a matter of perspective.
Nancy Goodfellow is a Naperville mom of three.