'Til We Are Made Whole

We’ve always been a tad different. My wife had our first three children at home, as comedian Jim Gaffigan would say, because “we believe in witchcraft.” To also quote Gaffigan, why would we want to have a baby in a hospital where you “wear a gown that someone else died in yesterday.” A place where you go when you’re sick doesn’t make much sense for the wonderful joyous occasion of bringing life into the world. So, James, Caroline, and Nathaniel we’re all born at home with midwife attendants.

Then, low and behold, Tracy is pregnant with twins, and no midwife wants to touch us with a 10 foot pole (too much liability). So, we being the rather normal routine of seeing doctors and having ultrasounds and the like. All very standard. Certainly unique for us, but not unusual for most pregnant moms in America. All of our ultrasounds turned out normal other than baby A being breech. So the next step was another big challenge for us… c-section.

I remember standing behind the curtain holding my wife’s hand while they brought those wonderful little babies into the world. Baby A (our troublemaker then, and who will become the troublemaker for our whole lives) was little Christina. When they brought her out, I realize something wasn’t quite right. Her hands looked like mittens and her toes were webbed. Her forehead protruded a bit. She was rushed over to be looked at by doctors. I put it out of my mind as little William emerged next seemingly normal.

It wasn’t until we were all back in the room when the doctor said. “As I am sure you might be aware, Christina has some issues. I did some Googling (never a good sign) and it looks like it might be Apert Syndrome. It’s one of those one birth in 66,000 to 88,000.

Welcome to a long road of surgeries, therapy, support groups, doctors visits, insurance phone calls, and sleepless nights. Our whole world changed when we realized we were given a special needs child.

This is just the beginning of our journey in learning about Aperts. We have a long road to go down. We invite you to join us as we reflect and learn about our daughter’s disability and also learn and grow as her parents. This is the moment for us when everything changed…