One Year Ago Today

One year ago today, Brad and I sat in a darkened ultrasound room while a stout, balding man with round cheeks and a salt and pepper mustache told us, "This is not a good news situation."

At 15 weeks pregnant, I had gone that morning to my OB's office for a non-routine heartbeat check with an unshakable feeling that something was "wrong" with the baby. I was afraid that I had miscarried, although I had no rational basis for my belief. My OB offered to do an ultrasound, presumably to ease my concerns and show me that my worry was nothing more than typical "first time mom" paranoia.

But it wasn't paranoia. Although the baby's heartbeat was strong, the sonographer noticed that its brain had too much fluid. I was sent immediately to a perinatologist, who confirmed the diagnosis. He told us that we would have "a decision to make" and explained what other information we would need to gather.

We left the perinatologist's office that afternoon with heavy hearts and two new words to add to our vocabulary: Ventriculomegaly and Hydrocephalus. When we got home, Brad started researching while I cried. After reading several journal articles, all of which were littered with terms like "severe disability," "special needs school," "developmental delay," we happened upon a website that gave us hope: The fetal hydrocephalus site.

The site contained the stories of many, many children who had been diagnosed with severe hydrocephalus and who had been given the same grim prognosis that we were given for Claire. Although their outcomes varied, they all had one thing in common: They were beautiful, happy children. There was Owen, with his sheepish grin, and Cayman, with her effusive personality. There was Elisabeth, with her soulful eyes and quiet patience, and Matthew, with his infectious smile. There was Tyler, who seemed just plain silly, and Bryleigh, who looked a little bit mischievous. There was Parker, who was simply a miracle; Norah, who couldn't be cuter learning to crawl; Audrey Sue, who could melt your heart; Elijah, who was determined to keep up with all of his big brothers and sisters; Carly, who looked like she had the whole world wrapped around her finger; and Lillian, proudly modeling things that her crafty mommy had made for her.

It didn't take long for Brad and me to realize that we could never, ever end our baby's life. I couldn't bear the thought of walking into Piedmont Hospital and giving someone permission to stop her heart. Seeing the wonderful lives that other children with hydrocephalus led reinforced our decision.

For the rest of my pregnancy, I clung tightly to the hope that Claire would be just like all of the other children we had "met" with hydrocephalus. I imagined delighting in her beautiful smile and looked forward to watching her play with toys. Most of all, though, I couldn't wait to tell the stout, balding perinatologist that he had been wrong about Claire. I couldn't wait to tell him about all of the things she was doing that he said she would never do. I thought for sure that Claire would be able to convince him that there was hope for children like her and that he shouldn't be so quick to encourage termination.

But things have not gone the way I had hoped. Since her birth, Claire has had many, many struggles. She has seizures, sometimes several in a day. She is visually impaired and has hearing loss. She cannot yet hold her head up or roll from side to side. Her smiles are rare.

And through these months, as I have watched Claire struggle, I have experienced such deep pain. Many times, I have felt my heart being ripped from my body as I have stood by helplessly watching Claire seize. Many times, I have worried about Claire's future to the point that it has taken my breath away. Many times, I have wondered whether we made the right decision for Claire's sake. Many times, I have questioned my faith.

But, I have come to realize that Claire's life is special. And it is good. She enjoys playing with her toys "Mort" and "the Apple." She likes bananas and hates green beans. She gets a kick out of playing in her "little room" and never turns down an opportunity to cuddle.

This past year has been a journey. There have been overwhelming joys and profound sorrows. There have been countless blessings and many, many trials. This journey has taken my family and me to several places we thought we would ever go, including some we never knew existed. But, along the way, we have met many incredible people, some with unimaginable strength and others with beautiful hearts.

In many ways, the stout, balding perinatologist was right. Learning that Claire would be severely disabled was not "a good news situation." But there is one important way in which he was wrong: Many blessings have come from this situation. We have grown stronger as individuals and as a family. We have deepened our faith. We have seen goodness and kindness come from many. We have learned patience and tolerance. Our lives are richer because of Claire.

And that is "good news."