The day started like most others. John drove TJ to Kiddie Company and went on to work. I had asked for one week of vacation from my employer starting this day. We were to report to the Cleveland Clinic at noon for pre-surgery preparation and to meet with the surgeon. I spent part of the morning gathering a bag for Sarah. A few of her favorite toys, her pacifier and a blanket. A bit later I decided to include her music player and her favorite cassette tapes. I had no way of knowing at the time, but this would turn out to be an important component of her recovery.
Before getting Sarah dressed, I made sure to take one last picture of that perfect little naked chest. On this 6th day of February 1990, it would be the last time it would ever be so perfect. Or so I thought. It's funny how twenty years later I now look at the long scar on her chest, the crinkled circles from drain tubes, even the stretched skin where the trach tube once was and see perfect. That's the beauty of writing the story in twenty ten.
To Sarah, this morning was just like every other. She had no idea what was about to happen. I'm smiling as I look at this picture today. I think she was trying to warn me about those flexible little legs and feet. Before long, she would be using that same position to get the annoying ventilator tube out of her throat. I should have picked up on that clue.
One last photo to show off her amazing head control. Something she had been working on with Miss Jackie, her coordinator from the County EI program. It was a position that had become progressively more difficult as her strength was waning from the significant defect in her heart. Her little body was just about out of energy. This was not the ideal time to take her into surgery. We knew that. But she was simply running out of time.