In May, 2004, my husband and I were in Pretoria, South Africa, visiting our daughter and son-in-law, their toddler, Grace, and newborn Sarah. We met Sarah in the Neonatal Intensive Care Unit, where she lay attached to monitors.
Born with three holes in her heart, the defect had been detected before birth. Because this problem is a marker for Down Syndrome, more tests were done. The baby did, indeed, have DS. Although shaken by the diagnosis, her parents immediately established a positive attitude for family and friends by declaring, “The baby is still a gift; just in different wrapping.”
We all eagerly awaited the birth of the little person we already loved. Sarah went home at three-weeks-old, with open heart surgery looming in the near future. Lacking the strength to breast or bottle feed, she took formula and medication through a tube. A monitor watched her oxygen level; if it dropped too low, a buzzer sounded. She did well, and never “turned blue,” as we’d been told she might.
Admiration spilled over when I watched my daughter care for this fragile infant. The hospital sisters had taught Mom how to change the feeding tube, and she did it with speed and precision.
Within a week, we relaxed a bit and began treating Sarah like any newborn. She was a baby first, an invalid second. At three months, the cardiologist determined that time was of the essence; Sarah must have surgery. The surgery on her heart, the size of a walnut, went well and the organ began functioning as it should.
But a day later one lung collapsed, and doctors began a treatment that they warned might not be successful. We collectively held our breath and prayed. Sarah rallied, but we later learned that she almost didn’t survive. An infection kept her hospitalized a few days longer, but after three weeks in intensive care she went home, where she learned to suck a bottle and began life as an active baby.
Now back in this country, Sarah participates in physical therapy and speech therapy and has learned sign language. Through this early intervention, she has met all the goals set by her therapists and functions within the range of “typical” children in her age group.
Emily Perl Kingsley explained in an essay titled “Welcome To Holland” that when you become pregnant it’s like planning a trip to Italy, a place you dreamed of going. But when your baby is born with Down syndrome you feel as if something has gone wrong. You’re in Holland instead. After a while, she says, you learn that Holland is not a horrible place; it’s just different. In fact, it has much to offer. Still, all your friends have been to Italy, and always brag about what a wonderful time they had there.
Kingsley concluded: “For the rest of your life, you will say, ‘Yes, that’s where I was supposed to go. That’s what I had planned.’ And the pain of that will never, ever, ever, ever go away, because the loss of that dream is a significant loss. But, if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”
I’ve been to Italy and Holland. None of their treasures is as charming and captivating as Sarah. We don’t know what challenges lie ahead for Sarah, but we’re confident she has the strength and determination to excel in whatever she tries. Each advance she makes is a significant blessing.
Her special gift is a dazzling smile, which comes easily. Her message, I believe, is that we all need to lighten up and wear a happy face. And we do, each time her impish grin and sparkling blue eyes remind us to do that.
By Madonna Dries
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.