In the past three years, there were many times I thought I was going to die. Not metaphorically, literally. I felt it would just be a matter of time until I was just skin and bones. Ashes to ashes dust to dust. Medical problems happen to every kid. Allergies, asthma, leaky adenoids, heart problems, and ear infections plague mounds of children, but with Down Syndrome medical problems are almost a certainty. This is part of the sorrow I faced when my son was born. I knew the pain had just begun. After a pregnancy riddled with agony, I received the news that my son had Down Syndrome when I was in again in pain; drugged from anesthesia; and it would be years before it ended. Not metaphorically, literally.

I remember a night so difficult, a night my son couldn’t breath, again. It had been a particularly bad stretch: months without more than two hours of sleep at a time. I couldn’t move my right arm because a muscle had snapped from all the hours of holding Addison and patting his back to help him breath; I ran to the toilet to vomit, but nothing came up. I choked and coughed and hobbled back to the bed; my son began to cry and I screamed out to the ceiling: Is this when I am supposed to die? I’m not afraid! It’s life that’s got me terrified. Take me. Death must be better than this.

I didn’t die that night. (Suppose you figured that one out.) And, there’s no wonderful ending to this story; an angel didn’t appear; no bells chimed. It took two years to end the misery of my sleep deprivation. It was difficult for anyone to understand. People would look at me and wrinkle their eyebrows and try as best they could to sympathize. But it was if I had AIDS: They knew it wasn’t catchy, but just in case it was better to keep "a distance." Someone told me depriving people of sleep was even against the Geneva convention. Torture.

Facing death is life from the inside out. But that’s the funny thing…we’re all facing death…at any moment we could slip on that bar of soap or get hit by a semi-truck or drown in the neighbor’s pool. But we’re a stubborn bunch, us humans. When people tell me that Down Syndrome children are dropped into our lives as angels - gifts of light - I wanted to kick them in the teeth. Not metaphorically, literally. I didn’ t ask for this! This isn’t fair!

But I did ask for it. I asked for a life of love; I asked for a life of music and joy; I asked for courage; serenity; and humor. And during the nights with this little boy, I found it.

Not metaphorically. Literally.