On my acceptance journey I danced briefly with Denial (which didn't last long because we had an amnio). Anger (oh I was good at that). Bargaining (not so much because I wasn't on speaking terms with God). Depression moved in and made itself quite comfortable. Depression was the roommate that lived on my couch and didn't pay rent but ate all of my food and left hair in my sink.
In the beginning it felt that my heart was literally cracked with all the losses and limits I had put on my unborn daughter. I was unable to separate my thoughts of Sophie from her disability. I focused on the future and what she wouldn't be able to do. My pain was largely self-centered as I believed that I had to let go of my dreams of teaching her how to ride a bike or taking her to ballet class. There would be no school dances or overhearing her giggle with girlfriends about her first kiss. I would not get to stroke her hair and tell her how beautiful she looked on her wedding day. I would not have grand babies to snuggle with all because of those two words, Down syndrome. (oh how wrong I was about so many, many things)
You cannot imagine the guilt that I felt for not being able to protect Sophie from her disability and duodenal atresia and for actually causing all of this. Surely it was my fault because of some awful thing I may have done in my past or partying too much in my earlier years. enter EGO Despite all the literature telling me that this is not true, nothing could convince me of it. Click HERE for more information on causes of Ds. She hadn't even been born yet and in my mind I had utterly and completely failed her. In a nod to Mr. Burns (the Simpsons) I call this period, wallowing in my own crapulence.
I have heard of others who spend very little time at all grieving when they learn of their child's diagnosis, whether prenatally or after the baby is born. All of us have our own acceptance journeys and it is not for me to question those who say that they had one night/week/month of tears and then moved on. I've worked long and hard not to let other's journeys make me feel even more guilt for my own long and painful path towards acceptance. If you had asked me before having Sophia if I thought I was a good person, I would have answered yes, and I was. It came to a surprise to me when I grieved so deeply.
I remember when I was hoping to have a baby and then later when I was pregnant I began to see bulging bellies everywhere. Certainly, I thought, there had not been this many pregnant women around me before this. Of course they had always been there. It was just that my eyes had been opened to them. The same thing happened with people with Down syndrome. Never in my whole life had I seen so many people with Ds as I did after we received Sophie's prenatal diagnosis (up until then at least).
I recall picking up lunch and noticing a young woman with Ds behind the counter who had a Job Coach with her. Not wanting to stare but having a deep need to study her almond shaped eyes as a way to form a connection to my daughter, I stole as many glances as I could without making a scene. My heart wanted to ask her if she had a happy life, if she liked her job, if she had friends. Each time I saw someone with Ds I wanted to drink them in. I wanted to see their hands and trace the transverse palmar crease called the simian line. This is the singular line across the palm that many people with Ds have on either one or both hands.
I had not yet laid eyes on my daughter but she was already opening up a whole new world to me. Stitch by stitch my tiny teacher was mending my heart. She was healing me and I didn't even know I was broken.
to be continued...
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