On Raising an Angel

Since writing this, I've been trying to decide whether to post it.  It's a personal recollection about a painful experience.  I'm speaking about the birth and death of my daughter, Holly.  Today would have been her 29th birthday.  "Would have been," except that Holly lives only within the confines of my heart and the solitude of my memory.  Holly's memory is a precious gift.  We don't gaze all the time at something valuable; rather, we bring it out from time to time to admire and to touch.  The rest of the time, we carefully pack it away, knowing it is there for us when we want to bring it out again.  Today is one of those days.  My blog is about my life, and for today, this is what's on my mind.

Holly was a full term baby.  She was born with a rare and random chromosome anomaly known as trisomy 18.  You can read more about trisomy 18 by clicking on the link I've provided.  In short, it's similar to Down's Syndrome, in that she had an extra chromosome.  Children with Down's Syndrome have an extra of the 21st chromosome.  Holly had an extra of the 18th chromosome.  Here is a picture of her genetic karyotype.  Notice that the rows of chromosomes are lined up in pairs, except to the right of the third row, where there are three of the 18th chromosome.

You can also see her double X chromosome in the last row to the right, indicating that she is a girl.  Contrast this with a normal karyotype.  This child has two of each chromosome--one from dad and one from mom--and you can see the X and Y chromosome to the right in the last row, indicating that this child is a boy.

Holly gave every indication prior to her birth that she was completely healthy.  My husband and I went to the hospital and gave birth as any parents would, waiting with excited anticipation for the announcement of her gender.  We were stunned when we were told within five minutes of her birth that her condition was "incompatible with life," and thirty-six hours later, Holly died.

It was unlikely that such a thing would happen.  These types of random anomalies ordinarily happen in cases of "advanced maternal age".  I was just 28 when she was born.  We had a perfectly normal son, Erik, and nothing like this had ever happened in either of our families.  We were told that our chances of having a repeat event were minuscule, but Holly's death was so illogical that it was difficult to take much comfort in those reassurances, or much of anything else either.  I descended into an abyss of sadness that I had never before experienced, and nothing has ever touched me as deeply since.  She was the last thing I thought about when I fell asleep at night, and the first thing I thought of when I awakened in the morning.  Her death drained the color from my life.  I felt numbly detached from my day-to-day existence.

It's strange to say, but when one loses a child, the child only ceases to exist in the minds of others.  To the grieving family, the child continues on, growing and changing in a might-have-been chronology.  For example, on the day Holly would have graduated high school, I found myself strangely fascinated with the goings on at the high school graduation ceremony.  We were out on our boat on the river when I looked at my watch and noted out loud that the graduating seniors would be receiving their diplomas soon.  The others on the boat looked at me quizzically, obviously wondering at my interest in these kids who were no relationship to me.  Even I thought it was strange. 

We were in separate cars as I drove home that evening and as I passed the high school, I noticed the lights on and craned my neck trying to get a glimpse of the graduates and their families.  It occurred to me later that even though Holly wasn't physically with us, I had raised her every day of her might-have-been life.  Every step of the way, I had imagined what she might have been doing at a given age.  In my mind on that evening, she was receiving her diploma right along with her would-have-been age mates.

Parents of living children take pictures and collect mementos of their child's life.  The parent of a dead child does the same thing.  The difference is that the parent of a dead child constructs those memories from anything and everything that comes along that might have been relevant to the child's life and death.  Of course, I saved little mementos from the hospital, like the card on her bassinet:

and her hospital birth certificate with her little footprints stamped next to my own finger print.

When a person is shaken to the very core of their being by an event as devastating as the death of a child, these mementos can be very important.  They provide tangible proof of their dead child's existence.  The grieving mind is not easily convinced of the reality of the situation.  Sometimes it's nearly impossible to believe that such a thing could happen . . . to me and my family. 

A few months out I read a book entitled, When Bad Things Happen to Good People, by Harold Kushner.  It helped me to heal, and it changed my life.  Kushner pointed out that the dead depend on the living for their immortality.  The book helped me to see that Holly would be remembered by others based on how my family came through the experience; and so I made it my mission to make her life touch others in a meaningful and positive way.  I wanted to teach others how profoundly these little lives touch families.  I wanted others to know that their deaths are not easily put aside nor forgotten.  I became an active spokesperson and teacher and helped to start a support group for parents who had experienced losses in pregnancy.   I wasn't expecting it at the time, but working with grieving families would set me on a path to a career in social work.

When her 20th birthday came around, I began to feel as if I'd done as much as I could for her as a mother.  My mission felt complete and I was moving toward scaling back my work with grieving families.  After so many years of keeping her memory alive, it felt as if the time had come to let her little soul rest in peace.  Children naturally grow up and leave home, and it was time for her to go too. 

My husband and I decided to go to the beautiful and historic St. Johns Bridge which spans the Willamette River in Portland.  We had in mind to say our good-byes to her by dropping flowers into the river with the idea that they would make their way to the Pacific Ocean where her ashes are buried along the Oregon Coast.  In general, February is a cold, gray, rainy month in the Pacific Northwest.  Nevertheless, her birthday turned out to be bright, sunny, and warm that year. 

We walked to the middle of the span and dropped our pink carnations into the water. 

They floated right in the middle of the channel, and we watched until they drifted out of sight.

We talked about it for several days afterward, wondering if the flowers had reached the ocean by then.  It was a lovely way to put her memory to rest.

I don't think or speak about Holly very often any more, but her birthday never goes by unnoticed.  Some years I pay more attention to it than others.  I've noticed that when she reaches an age that was significant in my own life, I think about her more and wonder what she might have been like had she been born healthy and whole.  I thought about her more when she would have been 25 because that was my age when my first child was born.  I imagine I'm thinking about her more just now because I turned 29 shortly after her birth.  It is still easy to remember the sadness I felt on that day. 

Holly's memory generates sweetness rather than sorrow now, but I don't imagine I'll ever stop wondering what she might have been like.  If you've read this far, I appreciate your interest in her sweet little life.  When I was gathering mementos for writing this entry, I took her picture out of its frame.  Behind it I found one of the things I collected over the years.  It was a clipping from an article that appeared in Time magazine some years ago.  The article was written by a woman who had experienced five miscarriages and who had no living children.  I wish I knew her name so that I could give her credit.  She did such a beautiful job of writing about how it feels to be the mother of a child who dies young.  In closing, I want to share it with you.

You have children--not in the world inhabited by other people, but in the private world of your heart--you have children you will never get to mother.  They are secret children, like those children you read about, confined to an attic or a closet.  No one but you recognizes their existence; you yourself don't even know their form, their genders, the shape of their noses, the color of their eyes, and yet the strength of their souls flutter inside your heart like a caged bird's wings.  As a mother, it is your job to get them out into the world, but you have failed them hopelessly, and so they haunt you, inhabiting a hyperreality that in the middle of the night feels truer and more real than any reality you have ever known.  They are your children, and you are their mother.  And yet you do not stop your life for them.  Instead, you go on.