What It’s Like

A little over three years ago, my sixth baby was born into loving hands, a planned home birth.  I had, of course, spent the previous nine months imagining what this newest member of our family was going to be like, and dreaming the dreams for him that mothers tend to dream for their babies.  Within the first day after his birth, it became clear that something was wrong, and after a frantic drive to the ER, our tiny newborn was admitted to the NICU where he would undergo major surgery at a day and a half old to correct the intestinal atresia he was born with.  It was while Finn was in the NICU that we learned that he has Down syndrome.

Suddenly it felt as if all the dreams I had dreamed for him were shattered.  I was afraid and angry – what did this mean?  What would it mean for our family?  What did I do to deserve this?  How bad was it going to be?  I was overcome by a grief so deep, it shook me to my core.  There wasn’t a moment I didn’t love my new baby, and I found myself feeling a fierce protectiveness over him – but I felt lost and completely ill-equipped to be one of those mothers – a mother of a child with special needs.  I was just a regular person, often frazzled and short on patience with my “typical” kids – certainly not the special kind of parent that everyone was suddenly assuring me I must be to have been given this special child.

I’ve traveled quite a long way since those early months of grief and fear and sorrow.  Finn has grown into a mischievous toddler who continues to surprise me all the time.  I’ve watched my other kids grow around Finn into sensitive, compassionate children who are accepting of people with all kinds of differences, from all walks of life.

As for me, I’ve made my peace with my son having Down syndrome, with his being different. I adore every inch of him, his body, his heart, and his mind, and I wouldn’t change him if I could.

It’s changed me, having Finn. Although I am not a believer in some grand, divine plan, I do believe that being Finn’s mother has enlightened me in ways I never really thought about before.  There has been a great deal of introspection, reflection, and reevaluation of what it is I value. What constitutes a happy, full life? Are happiness and success naturally borne out of intelligence and ability to achieve? What are the criteria for a life worth living?

I have a sense of appreciation and perspective that I never had before. I am able to see and accept my fellow human beings with a more open heart and a broader mind; it’s made my heart more tender towards those who are different, and harder towards those who are cruel or callous or rejecting of those who are different. It’s made me more aware that we all have our trials, and that I and my family are incredibly fortunate and have a trillion things to be grateful for, Finn being one of those.

Sometimes the fear is still there, but I experience moments of fear concerning each of my children when I try to guess at what the future might hold.  Life doesn’t offer guarantees to anyone.  I don’t know what Finn will be capable of, but I have very high hopes for him.  Those dreams I had for him that were shattered? They weren’t really shattered at all. It just took me a while to figure out that his life is not about my dreams, it’s about his dreams, and only he can decide what those dreams are. Only he will be able to show me how his life is going to play out.

What I want people to know most is that this is not a consolation prize. This is not our family just making the best of a sad situation. We do not exist under a cloud of sorrow, and we do not dwell on the fact that our son has Down syndrome. Finn just is who he is, and we’re pretty much like any other family. This is just life; it’s rich and full, and it’s pretty great.

– October 2011