Ian Turned 30 This Week

On February 4, 1988, I experienced a miscarriage.  It was early but upsetting, and I thought, “Next year on this day, I’ll remember this with sadness.”  I did not.  I did not because the day before, February 3, 1989, I had given birth to a baby boy – beautiful, a month early, with light brown hair and blue eyes like my father, and Down syndrome.  I didn’t have the luxury to remember the grief of the year before because I had to deal with the grief I was experiencing then.

I wish I could remember what I knew about Down syndrome before my son’s birth but I do not.  It seems as if I have known Down syndrome intimately all of my life.  To be honest, I was happy to have my son, Ian, once I was allowed to hold him in my arms.  To me, he was a baby, plain and simple, and more importantly, he was my baby.  The happiness I felt when I held him did not, however, erase the grief of the loss of the child I had imagined throughout my pregnancy.  That child had died.

Every pregnant mother has dreams for her unborn child.  She may say that what she wants is only that the baby be born healthy, and of course that’s what I wanted as well.  I also told people I wanted him to have his father’s long eyelashes and my love of reading.  But there was more to it.  I wanted him to have a successful life, with possibilities and options and open doors, with love and partnership and family, with self-esteem and understanding and trust in himself and the world around him.  Of course he would be intelligent.  Of course he would be a man of integrity.  He would be well-read, athletic, witty, charming, and curious.

As I held Ian and looked into his slanted eyes, a startlingly sparkling blue, both features of Down syndrome, I thought about his future and mine.  My husband was in shock.  There was a line outside my hospital room, doctors and experts who came to tell us that Ian would be more prone to have leukemia than someone in the “normal” population, that Ian would likely get Alzheimer’s Disease by the time he was 50 years old, that Ian might never be able to say “I love you,” and that he might not read or write or sing or dance.   A parent of a child with Down syndrome came to tell us that it would be a hard life but one that was worth experiencing, that we would have more love in our lives than grief.

My sister came to be with me.  I called my parents, who lived in Florida, and my mother said she would research trains to come up – she was afraid to fly – and my father said no, they would be there tomorrow.  My mother argued for the train; my father insisted they would fly.  My sister took the phone and told my mother that if she wasn’t there tomorrow, she would be forfeiting the right to call herself my mother.  My parents were there the following day.

The day we came home from the hospital was the only time I’d ever seen my father cry.  He wanted to fix this for me.  He couldn’t fix this for me.

We met with a genetics counselor a few days after leaving the hospital.  When she assessed Ian, she was surprised that he was able to remove a blanket covering his face; a newborn with Down syndrome was not supposed to be able to do that.  My husband asked her about adoption – weren’t there long lists of people willing to adopt children with Down syndrome?  I was stunned by his question.  Never had he discussed that possibility with me, and I had never imagined not keeping my child.  Had Ian been born only a few years earlier, we would probably have been told to place him in a facility and forget we’d had him.  The geneticist told us to take him home and love him.

We did.  For the first year, he wasn’t a baby with Down syndrome but a baby.  Yes, there were therapists and early intervention and appointments with Down syndrome specialists, who were amazed by Ian’s early progress.  He held his head up earlier than he was supposed to.  He rolled over at 3 weeks.  He taught himself every milestone skill.  It wasn’t until walking age that the differences began to show.  It became clear that he lagged behind in certain areas.  But he also picked himself up in the middle of the room and flung himself at the sofa, running before he could slow down to a walk.  He knew his letters, numbers, colors, and shapes by the time he was three, and he was used as a poster child for United Way and as a see-what-we-can-do-for-your-child example at Mary Cariola Children’s Center.  He was remarkable.

As remarkable as he was – he is still remarkable – each delay reminded me that he was different.  That we were different, as a family.  That we would have difficulties forever, that there was no growing out of this.  That there was no way to fix this.

People around us didn’t know what to do or say when Ian was born.  Some said “I’m sorry.”  Some people stayed away.  Even at the hospital, voices were hushed.  The mother who came to visit us at the hospital was the only person to say “Congratulations.”  Cards came, presents too, but the expressions of joy were muted.  And some people disappeared completely.  I spent his toddlerhood concentrating on achieving milestone after milestone, experiencing grief and turning it off.

Then the next wave came.  When he was five years old, I noticed he liked to throw plastic bags into the wind and watch them fall.  Again and again and again.  He liked to put balls into large cardboard boxes and roll them around.  Again and again and again.  He developed an insistence on sameness:  his food had to be on the plate a certain way, he had to sit in the same place in the car, his schedule had to be unchanging.  I could see the autism before the autism specialist could.

He also developed explosive disorder and impulse control disorder.  He ran away.  He grew violent.  He ran across highways, climbed barbed wire fences, threw himself into Lake Ontario, jumped out of second story windows, and tried to exit cars as they drove down the highway.  Our family then included another son and a daughter, and their lives were tense and unhappy.  We could never go anywhere because Ian would run off.  They felt ignored because Ian’s needs claimed so much time and energy.  They felt resentment and anger.  My grief now included guilt because I couldn’t give my other children a normal life, if I even knew what that was. 

Eventually we placed him at a residential facility that had a school component, Pathfinder Village.  How ironic that we went in that direction twelve years after being told to take him home and love him.  Ian was there for nine years before graduating and moving to a residence near my home.  Three years later, his father and I divorced.

Ian is thirty years old now.  He still runs off when he can’t cope with his feelings, but he is well-read, athletic, witty, charming, and curious.  He knows how to use a computer and is a Facebook junkie.  He can’t carry a tune but he tries, and at Pathfinder he attended formal dances every year.  He’ll never drive.  He’ll never have children.  He may very well develop leukemia or Alzheimer’s, but he has his father’s long eyelashes and my love of reading.

He’s not the child I dreamed about and had to bury, but he’s still my baby and always will be.  Over the years I have sat with therapists and discussed Ian and my grief – it’s never quite gone, that sadness, that pain, but it rolls in and out like the tide.  I wonder whether I was responsible for his condition.  I question my fitness as a mother when I think I want him to die before me because I could handle his death better than he could handle losing me.  Once he ran away and I briefly wondered what life would be like if he wasn’t found.  Sometimes I see his abilities and imagine what he could have done without that extra chromosome.  I never imagined that mine would be among the increased rate of broken marriages that result from the addition of a child with special needs.

   Each counselor has been kind and caring.  Each has been solicitous.  But they didn’t know.  They couldn’t know.  I suppose only another parent of a child with Down syndrome who happened to become a grief counselor could ever know.  When you’re the mother of a baby or child with Down syndrome, the support surrounds you – early intervention begins at only weeks old, with mothers’ support groups in another room; there are family groups that provide Easter egg hunts and holiday parties.  It’s a lonely place, being the mother of a man with Down syndrome, especially without the support of parents, who have died, or a husband, who cannot handle fathering Ian the way I want him to.  Friends help, of course.  But they don’t know.  They can’t know.

And I suppose that’s okay.  The dreams I had for my unborn child had to be replaced with dreams for the child I held.  The expectations had to be delayed, often modified, sometimes dropped. I wouldn’t change who Ian is even if I could.  The grief I have experienced may never go away, but neither will my love for him.

This morning when I took him out for breakfast as I do every week, Ian said, “I love you.”