I pondered this post for a long time before sharing it with you, my readers. Last year, I shared a quest for Connectivity through which I gained such insight that it literally changed my outlook on life. By opening up my own quest for general discussion with family, friends, and anonymous readers, I learned so much more than I would have ever learned on my own. Pursuing a quest on one's own is never as successful as it is when in the company of comrades.
My new quest is for acceptance. No, I am not talking about acceptance to a club or clique, but the last step in the five stages of grief: Denial, Anger, Bargaining, Depression, Acceptance.
It was through the counsel of a person who has walked in my shoes and who shared with me some profound wisdom, that I realized that I was grieving the loss of motherhood or more specifically what I dreamed of as motherhood.
As a mom of a special needs child, she shared with me her walk through the five stages of grief after the birth of her son. Like my son, when you look at her son, he looks perfectly fine, but lurking beneath the surface is a horrible medical problem that would profoundly change her life, her husband's life, and the life of their eldest son. She shared that you have to grieve for the loss of the dream and perception of normalcy. She shared how she had traveled through the stages finally ending up at acceptance. She finally accepted that her son had medical problems, but that it was okay, and that she would be spending a great deal of time in doctor's offices and surgery waiting rooms.
"You have to work through the same five stages of grief till you can accept that your life is not normal." I was in tears as she explained all this and for the very first time put words to what I was feeling and unable to put words to.
You see while my son looks normal no one realizes the anguish that I feel because he is not 100% healthy. I am reminded daily of that as I wait for a dirty diaper or clean up spit-up from yet another acid reflux bout, or as I sit in the second or third doctor's appointment for the month with yet another specialist.
My son's diagnosis with 7q11.23 duplication is only a title to sum it all up: constipation, acid reflux, hypotonia (low muscle tone), speech delay, an undiagnosed sleep disorder, and various eye sight issues which require glasses and patching for two hours at a time. We see six specialists and our pediatrician twice as often as the average child for weight and growth checks. Twice he has been in the failure to thrive category. His speech has not progressed since he was eight months old. In order to achieve even the most normal milestone, it takes great effort on not only his part, but mine, and his occupational therapist. Every milestone accomplished is because he was taught by me or his therapist.
So I grieve and I pray.