Life Alliance

Where labels end and conversation begins

A Quilt of Imperfection- By, Linda Beneke

I met a 3-week-old baby yesterday whose name is Liam.  I was about to enter a restaurant and this adorable little baby was being held by his mom.  As an ambulance’s siren screamed out, the baby was momentarily startled and the mom and me sweet-talked him back to serenity.  Well, I’d like to think I had made an impact, but I’m sure it was his mother’s touch and loving voice that calmed him.

I spent the next several minutes remembering when my kids were little, that little, and I was hit with a flood of emotions.  You see, they’re 33 and 30 now and there is A LOT of water under the bridge, both good and bad, both calm flowing streams and turbulent seas.  And the inevitable question popped up in my head… would I do it again knowing about the turbulent seas part?  Absolutely yes, without a doubt. 

I remember distinctly going through some turbulence with one of them a few years ago.  He honestly wondered aloud if I would have preferred he not have been born; wouldn’t my life have been easier without him.  My answer to him was quick and easy… In our family, there was no “us” without “him” and there never could be.  The joy and fun and pride and love he had provided to us over the years could never be outweighed by the short-term issue he was going through in that period of his life.

It is for this reason, that when I was pregnant with each of my children and was offered amniocentesis to check for Down Syndrome, my husband and I were of one mind.  There was no way we could ever abort a child we created because of perceived imperfection.  There was absolutely no reason to have the test.

With that said, I was a bit surprised when I read that Iceland has virtually eradicated Down Syndrome because, by law, expectant mothers must be told about available testing and most who test positive for the Down’s gene choose to abort.  I am not judging any mother who questions her ability to deal with the struggles that having a child with developmental issues comes with.  What I do question is the lack of faith these mothers have in their potential to embrace, love, and nurture any child that comes into their lives, no matter what level of “normal” the child is.

Children are born with a myriad of traits; some good, some bad, some that can be seen, some that can’t.  Once science gives us testing that can provide pre-natal information regarding mental illness and cancer, do we abort those who will deal with depression, addiction, or cancer at some point in life?  Would we take away the opportunity for a child to live a great and fulfilling life for 18 years (or 5 years or 25 years) if we knew that when he or she reached a certain age, he or she would be struck with depression, drug addiction, cancer?

In the case of my family’s turbulent waters, I think of what the result would have been had I taken advantage of testing, been given advanced notice of these future turbulent waters and had aborted.  I would have robbed myself and the world of all the joy that my child had provided to date and would provide in the future.  Memories, pictures, funny phrases and, most importantly, love, that are part of our family’s quilt of life would be missing.  Picturing my family quilt with missing patches is sad at best and heartbreaking at worst. 

We are all products of so many things, both biologic and experiential, making us all as individual as the snowflakes that fall on a winter’s day, and because of that, we make different decisions based on all those individualities.  But for me, I’m so glad that my two average, normal, “less than perfect” kids are mine, turbulence and all.