There was a wonderful article in the April 23, 2007 issue of People magazine titled “Finding my son at the Zoo” that touched me on so many levels.
One line rang so true for me.
“That awful night I wrestled with the idea of grief and realized it simply wasn’t my instinct.”
The author, Thomas Fields-Meyer is talking about a moment in his life, just after receiving the diagnosis of Autism for his son Ezra, he and his wife, Rabbi Shawn Fields-Meyer were sitting at the therapist’s office when the counselor said to them…..
“You need to mourn”
“For whom?” I asked
“For the child he didn’t turn out to be.” The author and father goes on to say….
“I have never carried preconceived notions of what my children would become, and to this day, I have not wept over Ezra.”
My heart leaped for JOY when I read this article, because Tom Fields-Meyer put into words exactly how I feel and exactly how I have experienced life since Emma Sage entered into it.
I have always looked at people as individuals and I don’t think I have ever lumped a group or experience into a blanketed statement…..which brings me to one that I hear [read] often online in articles or groups related to Down syndrome. Even the famous poem ‘Welcome to Holland’ alludes to the fact that one will ‘always’ mourn the loss of the child you did not have [after having a child born with or developed a disability]. That it is a loss that “And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.”
I cringe when I read people make a ‘blanket’ statement……“Everyone grieves at the diagnosis of T21” or “people who say they never grieved are in denial”
I personally think that ‘blankets’ are great on beds, but should never be used as a statement to group an experience that is so unique and individual in one’s life journey.
I do understand that some people [and that could be many, many people] grieve at the diagnosis of T21, and some take a long time to reach a point of acceptance,,,,and even some [as the poem states] carry that grief with them their whole life journey….and that is part of their journey.....but it is not everyone's journey.
For me [and for the author Tom Fields-Meyer] my journey has been a spiritual one…..Emma Sage is exactly who she is supposed to be….and for that I celebrate. Yes, I work with her day in and day out…to help her develop all the skills she needs to live in our world, but that is not a form of grief or denial….it is what I believe all Mothers do. We nurture and care for our children, all of our children, helping them grow and develop into the best they possibly can be.
The author writes about life with Ezra as a spiritual journey……my spiritual journey with Emma Sage began at her conception. I knew exactly the moment I conceived her ~ as I felt her soul enter into my body. One of the most powerful and profound experiences of my life….I remember telling my Mother a few days later about the experience and telling her about the incredible sense of peace I felt because this experience solidified my belief that our souls are eternal. At that point I did not even have a confirmed pregnancy test ~ I just knew in my heart of her existence because her soul was just so powerful that she was the one to tell me that she was on her way into our world.
This spiritual journey is part of my daily life….this little soul just radiates….she teaches me daily about love and understanding…..she helps me see the miracles that surround us, a bird sailing through the sky, a tree toad croaking off in the distance….a wild flower – so tiny – so small – so perfect…..and at this moment right now in time…..with a blue blowpop in her mouth, her sweet little hands clasping the metal link fence at Otto’s baseball game……her yelling to her brother on the field [as his team is loosing by quite a bit]…..”Good job Otto…..I LOVE YOU!”