Devastating news brought anger to a mother, but God provides her with strength and joy.

Almost five years ago, we brought home our second child, Liam Andreas. He was a healthy boy. We thought he was perfect: ten fingers, ten toes, and startling blue eyes just like his big sis, Sophia. So we got on with the business of being a family of four.

As the months went by, I began to notice that Liam was not developing like his sister had—or like any of the other babies that I knew. I first realized this when I took him for his six-week pictures—a stress-filled experience that took two tries and yielded only one or two halfway decent photos. I remember driving home and wondering why, when Sophia was that age, we had been able to get her to concentrate on me and end up with so many great photos. I had a sick feeling in my stomach, but I just pushed it down. I told myself the reasons were just that he had a bad day and boys develop differently than girls.

A DIFFICULT ANSWER

The next thing that we noticed, around the same time, was a bizarre arching to the left side. Liam's whole body would be shaped like a rainbow. All of the muscles on his left side would be tight while the right-side muscles would be loose. I told the doctor. But his response was that babies do lots of strange things. He was unconcerned. I videotaped it. The doctor did an X ray and said Liam was fine.

But that event started 11 months of visiting every specialist I could think of. Our pediatrician thought I was overreacting, but I was calling every medical professional that I could find. Anyone was fair game. I had to find out what was going on with my son. We spent hours in doctors' offices and hours in therapy. Liam underwent so many tests. We left no stone unturned.

Finally, on a Thursday afternoon, the phone rang and we got an answer. It was so much worse than I had ever even imagined! Liam had MECP2 duplication syndrome, a neurological disorder that would make him severely cognitively disabled, would give him great physical challenges, and would decrease his life expectancy. If that wasn't enough, I carried the gene! Not only were our dreams for our beautiful Liam shattered, but what about the family that we had planned? What about more siblings for Sophia? Would she never have a brother or sister whom she could play with, fight with, and confide in? How would we take care of Liam? How would this affect Sophia? The questions were endless.