A year ago today, I took one final pregnancy test convinced that I was not going to get that last beastie. As I sat watching the test, my heart still hoping because I'm a fool, a faint line appeared. I grabbed the stick and ran out to the kitchen. Holding it up in the sunlight that filtered through the kitchen window, I could see that second line. I showed it to Beastie Boy who detected a second line. I photographed it and showed it to a group of close trusted friends. There would be many tests to come but that was the first indication of Jude.
I was scared. We were insane. Five BEASTIES. While H was finishing his PhD? It was craziness but underneath it I was overjoyed. I don't know why I had such an intense desire for this child but I felt with a quiet desperation that she should be in our life. And then we got the news.
And I felt so betrayed by the universe. Like IT had just played the world's worst gag on me. This is what you get, I thought, for always wanting more. I wavered between wanting her with an aching desperation to thinking that perhaps it would have been better if she hadn't been conceived at all. But when I thought too much about her as nonexistent it hurt. I could only push my tongue on that pain very tenderly. Because I did want her even with the extra [ness]. The thought of there being a not her was like a black hole of misery. Late at night even as I worried I wouldn't love her, I would rub my stomach and beg her to live. "Please baby, " I'd think, "I need you. I will learn to love you. I know I will." It was an incredibly lonely time because I didn't dare whisper these dark nothings to anyone. I had to carry them like a tumor inside my soul and my heart. Sometimes I thought their tar substance would poison me and I'd sob in the living room so that I didn't wake up H or R.
And now she is here...sleeping on my chest. The smell of her engulfs me, surrounds me, drowning me in the sweet joy of HER. She is so perfect and beautiful. So smart and so funny. She looks at me with utter trust because she knows I love her.
But this love is a big love. It has expanded to include a whole community of people. People with Down syndrome and those who love them. I read about :Ethan Saylor back in January. I remember sharing the news story and being so sad that it wasn't making the rounds. I felt the story deeply because here was a mother who had lost her beautiful son. Her good and perfect gift. He was taken from her too early because he brutalized by three off duty deputies acting as security guards. All over a 12 movie ticket. When I read that he called out for his mother, my heart shattered. I have sobbed over this story again and again because Ethan Saylor was my son. He was OUR son. All of ours. And when I am holding my sweet girl, I feel Ethan's spirit. It's a woo woo statement I know but there you go. I feel him.
The radical Christ I choose to emulate commanded us to love all as we love God. It is indeed One Love. One Heart.
Tonight I joined my community to remember Ethan. Those of us with kids who have Down syndrome and those of us who don't. We all know how to love, and we showed that as we remembered Ethan. And then many of us went and Twitter bombed everyone we could think because quite simply we will not forget. Ethan was a human being. It's really that simple. He was killed not because he had Down syndrome but because some people did not see him as human. It happens all too frequently with people who are disabled just as it happens to women, the elderly, the poor, those of a different "race," gays and lesbians. It is time that we step up to one love, to one heart. I am not longer willing to lay down my sword. Jude is too precious to release into a world that does not see her as human. Until she can speak her liberty, I will speak for her. And once she can speak, I will lift her high so that her words can pierce the hate.
For a truly excellent commentary: http://gardenofmyheart.wordpress.com/2013/04/12/uncomfortable-truths/