Three years ago my full-time job was to assist victims of domestic abusers in times of crisis and to train and manage crisis hotline advocates to do the same. I was (am) damn good at it, but it meant that everyday was a crisis day. Every day I tried to help someone on the worst day of their life. I spoke with abuse victims in unimaginable circumstances who were trying to make sense of situations that they had little control over and that had left them with almost no hope. Not many are called to this field, but once it gets in your system, it never leaves. I know now that my many years of fighting injustices and standing up for those whose voices had been stolen was my Advocacy boot camp. I had no idea that I would soon use these skills to fight for acceptance and inclusion for people with developmental disabilities.
I had entered a new phase called "Telling Towards Personal Acceptance." I said the words out loud in the strangest places and to the least likely people. "We are expecting a baby girl. She is due on my birthday and she has Down syndrome." I said it over and over, but rarely was it for the benefit of the person I was telling. I said it so that I could hear my own voice speak truth to our new reality.
After a meeting about domestic abuse at the courthouse, I was in a discussion with two former and one current co-workers when I blurted out the news. "I'm so glad you are handling it the way you are," Jenny said. I thought she was saying she was glad we hadn't terminated, but I suspected I had misinterpreted her words, so I asked even though you could have cut the discomfort with a knife. She meant she was glad I was open and talking about it. Jenny became a source of support for me at the office from that moment on.
When I signed up for prenatal water aerobics, I heard myself telling our instructor. I felt that I needed to let her in on why I might not be as joyful and chatty as those other blissfully lucky pregnant women (that I now hated/envied) since I had been Chuck Norris roundhouse kicked out of their happy club (bitches)! Instead I got to hear how she was once pregnant and learned that the baby had a chromosomal deletion that was not compatible with life which led to an abortion.
The first time (or maybe the 2nd) that I failed a non-stress test-NST (test of the baby's heartbeat and movement) at my twice weekly appointments, I was sent to the hospital for further evaluation. After I was released I headed to a fast food drive up and ordered comfort food. Still wearing my I.D. bracelet and obviously pregnant, the young woman asked why I had been at the hospital. I muttered a response and she asked if they were worried that the baby had a problem like Down syndrome. "Why yes, actually," I said. "We are expecting a baby girl. She is due on my birthday and she has Down syndrome." This young woman was stunned and we held up the line while this complete stranger and I talked about it and I heard myself saying, "It's ok. It's going to be ok." It was the first time I truly believed it.
I carried the book Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, with me everywhere. It was my new bible, especially as I had kicked the King James version to the curb. Waiting at the pharmacy where I was wearing a very cute olive green eyelet dress (cute to compensate for my pain) I set the book down on the counter. My car keys covered the title and all you could see was the picture of a beautiful naked baby in her father's arms (we would soon have our own professional shot taken like this of Sophie & Mark). The pharmacist was a woman that I had been friendly with in the past and she had kept up with the pregnancy, but hadn't yet heard the news. I found myself slowly, deliberately sliding the keys off of the book and hoping/daring her to read the title. I watched her closely as she read the words and looked up with wide, kind eyes. "We are expecting a baby girl. She is due on my birthday and she has Down syndrome."
did you miss The Beginning, Part 1? Click HERE,
Part 2 HERE