Saturday, August 18, 2012

How long is the grieving period?

I would be very interested to hear the thoughts of other mothers of children (or adults) with Down syndrome on this subject:  How long is the average time, in your experience and/or people you know, that a new mom grieves when she finds out her baby has Down syndrome?  There have been several things that have caused me to think about this.  A friend and I were discussing this today because of something we'd read. 

Last summer, our DS group was searching for a book to add to our bags given to new parents.  I read three books written by mothers of children with Down syndrome, hoping to find the one I would have wanted to read soon after the time Jessie was born. I've read other things since and now all the stories are mixed together in my head :)  While I can't remember the individual stories, I remember being struck by how long (for some) the grieving seemed to last.  Why does this matter to me?  Well, first, this kind of thing tends to roll around in my mind and be over-analyzed anyway.  Second, it affects how I might respond to new mothers in the future. And, it will help us decide what book to include in our new parent bags.

Two of my closest friends are mothers of children with Down syndrome.  For each of the three of us, the time of true grieving, feeling completely overwhelmed with -what-in the-world-am -I going-to-do-with-this-information, was short.  It was a painful, uncertain time, filled with rational and irrational fears, but the time it lasted was short. We continued (and still continue) to experience painful realizations that hurt for a moment, or a day, or a week, but never past that initial time would I describe feeling overwhelmed with grief or fear. 

I would be very interested in your recommendations of what books you've read that would be what you would want to read in that early period.  Currently, our new parent bags include:  Babies with Down Syndrome, a notebook of stories of our local families including pictures, a burp cloth printed with "I am wonderfully made" and another's the last book that we're uncertain of what it should be.  It's been a couple of different books in the past and we haven't settled on what it will be now.

Although I haven't posted here in forever, I hope I will hear from some of you :)


  1. For me, it was only 4 days
    This may be because Suzie had to stay in the NICU until she was 4 days old. I did not get to hold (or even see) her until she was 12 hours. She was tube fed, and I was forced to go home without her 2 days after delivery.
    I did not stop feeling sorry for me and my baby until she was truly mine . . . when we took her home.
    Once I could hold her, feed her, change her diapers, and bathe her, she became my beautiful, wonderful miracle and I no longer grieved . . . I laughed, loved and enjoyed

  2. We didn't grieve for very long either. Once we got past the initial shock and took her home, we was okay. Still had moments of Down Syndrome reality, but the overwhelming 'what are we going to do??' was short.

    I read a book called You Will Dream New Dreams by Stanley Klein and Kim Schive. It's fairly old, written in 2001 but it's filled with stories from parents who have children with Down Syndrome. It helped me to know (even though Beth was already a teenager) that I wasn't alone in everything I had been experiencing.

  3. Our time was short also. It was a very tough 24-48 hours and then a week or so of research and then Sam's medical needs became the focus so we seemed to move on. Still hit by thoughts and feelings of grief at times, sometimes when I least expect them but never for long. A book I read after Sam was born was Changed By A Child which addressed many of the thoughts and feelings parents of children with special needs experience. A kind of sharing which helped me realized I was not alone.