I shared my friend's pregnancy through long-distance telephone calls, listening on Sunday afternoons as she described preparations for the arrival of the newest member of her family.
Last week, a new California girl was born: Katie, the embodiment of her parents' hopes and dreams.Today, I am thinking about the joy of her birth - and the unspeakable grief that accompanies it.
Katie was born too soon. Besides the complications of prematurity, doctors believe she will be blind. She has a spinal defect that means she will probably always use a wheelchair.
"How will we live through this?" my friend asked, crying quietly into the phone. "Was it something we did?"
I didn't have instant, easy answers, so I mostly listened to her pain and fear. In the last week, I've had time to think about it. And about other parents I know who have had complicated pregnancies resulting in the birth of babies with medical problems.
As a human services reporter, I probably meet more children with disabilities than most people do. I've learned a lot from them - and their parents.
We all bring our backgrounds with us into new encounters. I know that I am more optimistic about the future of these children because my own parents are blind - my mother from birth and my father from young adolescence. I have all my life been introduced to very accomplished people who are blind, deaf or otherwise "disabled." I have learned that much of the so-called disability is imposed by other people who "think about what it would be like" and then accept that as reality.
It doesn't have to be.
Many of my mother's earliest memories center around long car trips (and they were long in the early '20s) across America, looking for doctors who would tell my grandmother that they could "fix" my mother and her non-functioning eyes.
They never found anyone who could say that. Eventually, when they stopped searching and settled down to see what could be done, she began to have a normal childhood and a very happy and productive life.
She played the piano at age 5 by ear and learned to type when she was 8. She's fast and accurate and worked as a secretary until she had children (who are all sighted). She has a diploma in massage and physiotherapy. She played the violin for David Rubinoff and earned a gold medal. She is her church pianist. She attended public schools and belonged to all the clubs.
She didn't need to be "fixed." She just needed to be encouraged and allowed to grow and explore and prosper. She needed people who would take into account the things she couldn't do - or the things that are harder because she can't see - and help her find ways to adapt.
She needed the same things that all children need.
When I talk to my friend again, I will tell her many things. I will tell her it's OK to grieve. They will face special challenges as Katie grows and it won't always be easy. But they will live through it - together. They can be happy.
Katie will be able to do many things with her life, if she's encouraged and taught that she can.
I know attorneys and a judge who are blind. I know others who use wheelchairs. I've met government officials who are both.
I know teachers who are deaf, who are blind, who are physically disabled. I know a scientific researcher who has multiple sclerosis and a computer whiz who has muscular dystrophy. I know mentally retarded adults who work eight hours a day. My cousin is severely retarded and operated his family's farm, taking care of the animals when his father died.
I know a man who is blind and deaf and works in a glove factory, a blind woman who does the most incredible bronze work, a woman in a wheelchair who holds a paintbrush with her teeth and creates majestic watercolors. I know a blind reporter.
We probably would never have had the telephone if Alexander Graham Bell's mother and his wife weren't deaf. Some of our most beautiful music was created by Beethoven, who was still composing after he became deaf.
Parents grieve when a child is ill - and the knowledge that the problems are lifelong is a burden.
But I'll never forget the words of a woman whose child was born without a brain and without any chance to survive. In a television interview she said, as she held the baby for the first and last time before donating the infant's heart to another baby, "I am filled with such awe at life. She is so beautiful. I have never felt such love for anyone."
My friend will come to know that love, as well.