Beginnings

This is our very first family photograph. Kellen was a few days old and we were visiting him in the intensive care unit at Children's Hospital. He had already had one surgery by this time, a colostomy was "installed" because he was born with a condition called congenital intestinal aganglionosis or Hirschsprung disease.

Babies with Down syndrome are much more likely then other babies to be born with additional birth defects. Kellen was born with a congenital heart defect as well. That's why his complexion appears so "blue" in this photo. The funny thing is, back then, I don't remember noticing how blue he looked, although I do remember other people commenting on it. What I do remember is how very scared I was those first few weeks. Overwhelmingly scared. All the time. I didn't know what life would be like if he died and I didn't know what life would be like if he lived.