At some point, most of us have children; though I haven’t arrived there yet, I will. We dream big dreams for our sons and daughters. We expect that they will be born healthy. We don’t expect that their lives will be perfect; we assume that they will get nasty colds and strep throat, bruises and scrapes, and even a few broken bones. We expect that they will be smart and do well in school but that we may have to give them a nudge every once in awhile to remind them to give it their all. We expect that they will grow up to be healthy and strong and fill their lives with whatever it is that will make them happy and make us proud.
But life doesn’t always work that way.
In 2008, a friend and his wife celebrated the birth of their first child, a beautiful boy. Their celebration was interrupted, however, when doctors at the hospital discovered that their son had the very worst congenital heart defect – hypoplastic left heart syndrome. And so, instead of taking their son home, they said goodbye to him as a team put him into a contraption that looked like an infant-sized spaceship and sent him to another hospital in Atlanta – four hours away – that specialized in caring for children with hypoplastic left heart syndrome. Then, they climbed into their car, pointed it south and followed their son’s spaceship to Atlanta, not knowing what awaited them upon their arrival later that night or in their future as a family. Their newborn son had the first of three major heart surgeries during that first stay in Atlanta. Today, he’s a true miracle: a bright, energetic kid with half a heart and a whole lot of love. His future – just like yours – is still unknown. But his present is worth living for.
Thirty-one years ago, a slender 24-year-old gave birth to a nine-pound, four-ounce baby. During the delivery, the baby suffered a severe brain injury. No one knew that at the time, though; it wasn’t until later that the mother noticed that something wasn’t quite “right” about the baby. Then, the seizures started. Before long, a neurosurgeon operated on the baby to place an intracranial shunt. The baby would likely have the shunt for the rest of her life, he said. But the baby caught a staph infection, and the surgeon had to remove the shunt. And for reasons that are still not understood to this day, the baby got better.
That baby was me. I never had to have another shunt, and I never had another seizure. I still have chronic migraines, but I earned good grades in school and had success as an athlete. The neurosurgeon who saved my life still calls me the “miracle baby.”
In 1998, my mom had her third child – my sister. We joked about the easy delivery and recovery. Taylor, the picture of perfect health, came home within days of her birth. Mom – the quintessential overachiever – went back to work the next week. Within months, my sister had the world wrapped around her little finger. By age 3, she could read. She was whip-smart, beautiful and spunky. She was anything but a child with a fatal disease.
And yet…that’s what she had.
In July 2006, our world came crashing down. A geneticist confirmed that a problem with a particular gene out of the 20,000 to 30,000 genes in my sister’s DNA gave her infantile Batten disease.
In the near-seven years since we learned about my “perfect” little sister’s cruel fate, we’ve learned the meaning of small victories – like hearing Taylor laugh or, in more recent months, hearing her speak.
We’ve learned the meaning of living life day by day, rather than year by year…because we can’t count on next year.
We’ve learned to live for small miracles – such as my sister’s 5K race finishes or the true friends who’ve never left her side.
We’ve learned that nothing in life can be taken for granted.