hopeless, peaceful and full of dread. All at once. Nurses with reassuring words, delivered in patronizing tones. Brightly lit corridors remove all the gray areas and prevent you from hiding your terror. They illuminate your sadness and hope equally.
We leave Room 507 with its mocking array of balloons, cards and flower arrangements, and walk down the hall. On the left is a window and through that window is a nursery full of newborn babies.
“Jillian Daugherty,” I say to a nurse.
Nothing in life is better than birth. Hope knocks anew. You might have screwed up everything else in your life, butwhen your baby arrives, your soul’s calendar flips to a fresh page. This feeling might not last forever. It could disappear the moment you leave the womb of the maternity ward. In that first moment, though, it’s there. Plain as a sunrise. You have a new purpose.
And now?
The nurse brings our child. She is wrapped deeply in her pink blanket. Someone has attached a pink bow to the wisps of her soft brown hair. Jillian is sleeping. I give her to Kerry. “It’s going to be okay,” I say. Whether I believe that or not doesn’t matter. I need to say it. Kerry needs to hear. “Our little girl is going to be all right.”
Kerry takes the miracle and holds it lightly. Love is weightless. “I know,” she says.
There are things you learn along the way, things that help you deal with that awful moment and, eventually, to understand that it wasn’t so awful. Having a child with a disability is like having a life coach you didn’t ask for. You realize that perspective is a blessing that’s available to anyone who seeks it. Or has it forced upon him.
The miracle of an imperfect child is the light she casts on your own imperfections. After a time, she will teach you far more than you will teach her, and you will discover that “normal” comes with a sliding scale.
You realize a kind of love you never knew you had. Nothing magical that happens, from the first tying of shoes to the first solo flight on a two-wheeler to the first time she shows us her paycheck, is ever again assumed. Life’s everyday worthwhiles take their proper place in the happiness queue.
The potential for kindness becomes self-evident and the universal need for compassion abides.
Twenty-four years later, if Kerry and I know anything, we know this: We’re better human beings for knowing Jillian. She was put here to make us better people. That’s the all of it.
I have forgotten lots of things about Jillian’s life in the 24 years since that first day. Poignant, funny things. Things that made me rage. Snapshots of who she was becoming. I’ve relied on the better memories of others to color what’s gray. I haven’t forgotten that phone call, though. I’ve never again experienced the dark kaleidoscope of emotions encountered in those first 24 hours. I’ve never felt more alive. I’ve never wished more that I weren’t.
Jillian was born October 17, 1989. It was the last bad day.
CHAPTER 2
Paul and Kerry
For us, there is only the trying.
The rest is not our business.
— T. S. ELIOT
I was six years old and in the second grade when my mother first tried to kill herself. I had just come home from school when I found her lying on the kitchen floor, blood from her opened wrists pooling on the linoleum.
“What do you want me to do?” I asked her.
My mother said something I didn’t understand.
“What?”
This was 1964, and there was no 9-1-1 in those days. There were numbers in a phone book for doctors and ambulances and police, but I didn’t know how to find them. I stumbled through another plea. “What can I do?”
I knocked on the door of the neighbor’s apartment and rang the bell. No answer.
I returned to the kitchen. This was the first time I’d seen blood. “What do you want me to do?” I said again. Maybe my mother said “Call Dad,” but I don’t remember. I didn’t know his work number anyway.
That’s when I went out to