Tuesday, August 23, 2011


August 23, 2010

It was one year ago today Grace was diagnosed with EMEE. At the time it was the worst day of our lives. We were in complete shock at what we were being told. How could this beautiful little baby girl be so sick? We just didn’t believe it. Which is why I made the Neurologist go over her EEG with me line by line. I had to try to understand what I didn’t.

We knew something was wrong with Grace, but we thought maybe she was a little malnourished and excessively sleepy. But we weren’t prepared to be told our daughter only had a 50% chance to live a year. That was devastating. It made us numb to the world around us. We would have done anything to make her better. Every time a doctor would come into her hospital room we’d ask him questions on this that and the other. After he’d leave, we’d start complying a new list of questions. It took a week before we finally ran out of questions. There were no answers.

Grace needed us now more then ever. We had to be her advocate and caretaker. And we cherished every minute of it. We made the best out of the time we had with her and never took a minute for granted.

And that's Grace's legacy… to never take life for granted. To love and cherish your loved ones and live everyday like it’s your last. So on a day that changed our lives forever I hope you will find Grace in your life.