By Vicki Rackner, M.D.

My son, my first child, was born when I was forty.  During pregnancy, I declined amniocenteses (fetal testing before birth).  I knew that, no matter what, I would love whomever I got.

I had a great pregnancy while maintaining a busy schedule as a surgeon.  I performed a bi-lateral mastectomy four days before I gave birth. 

I gave birth to a delightful son, someone intensely interested in the world.  He could amuse himself for long periods of time. But it did not take long to realize that my son was “different.”  The “Mommy-and-Me” classes with other parents and babies were the source of pain and confusion.  My son was not doing what other kids his age could do.  We mothers seemed to be in a race. The winners were the kids who did things first, and my sweet boy was pulling up the rear. 

By his first birthday, my son was still not talking, not even making the small sounds that are the building blocks of language. I had his hearing tested. His hearing was fine. My pediatrician then performed a full evaluation. My son was delayed in every area measured. The doctor suggested admission in a special state-funded school for children with developmental problems. 

Self-Blame and “What-Ifs”

Walking into this school for the first time was very scary.  Every child in the school had profound physical and cognitive problems.  Most had Down’s syndrome.  I saw children in wheelchairs, others wearing coke-bottle glasses, and still others who wore bibs to catch steady streams of saliva.

When my son went to this school, I understood in a way I never could have imagined what it means to have a child who is not seen as “normal.” 

I believed that I might have unwittingly injured my son during my pregnancy.  During the nine months I was carrying him, I removed a number of gallbladders.  These operations necessitated a definition of the bile ducts by taking x-ray pictures. Of course, I wore a lead apron, but who knows how much radiation the fetus was exposed to?  Now, I had to face the reality that my firstborn and only child might not ever be able to care for himself, hold a job, or live independently.

I cried myself to sleep at night wondering what would happen to him when I was not on this earth anymore.

I told myself the same thing I told patients.  Self-blame and “what-if’s” would not move my son closer to the life I hoped he would have.  Nor would these thoughts move me closer to my mission as a parent.  I would fulfill the promise I made to my son as he was growing in my womb to love him unconditionally. 

I had a wonderful child whom I loved dearly—a fact that sometimes got lost in my late-night worry wanderings.  I would do everything I could to make sure that he lived in joy and love; to make sure that many paths were open to him.  He was going to live the fullest life that he could.

Shift Your View and Change Your World

When I shifted my viewpoint, an interesting thing happened.  My son’s special school, which had seemed so scary, became instead a home of hope and optimism. I looked past the drooling child and saw in him a bubbly boy with a quick wit.  The girl with the coke-bottle glasses had a gift of drawing.  The children who first frightened me because of their limitations now became my teachers.  Each one had a special spark.  What united all these children with different challenges and gifts was how freely they offered their love.  The school was now a treasure chest of resources, a joyful place to be.  It was a place that helped children express their fullness.

I am very fortunate; this story has a happy ending. At age seven, my son has the same cognitive and physical resources that non-developmentally-challenged kids have.  In fact, he is the smartest member of our family.  All of the doors of possibility are open to him.  He is just developing on his own timetable.

The dark days brought many blessings.  I learned that I could reach beyond what I longed for, and choose to embrace what was before me. Did I want or ask for this health challenge?  Absolutely not. Would I re-write my son’s story?  Absolutely not.  This first chapter in my parenting story was painful, but it was also a gift.  Early on, I “got” what it means to be a parent.  Being a parent is not making my son into who I want him to be; my job as a parent is to love him and to help him flourish.

The experiences with my son also changed the course of my doctoring.  I understood health in a new way, as being most fully who you are.