Nadine Friedman-Roberts (37) and Ozzie (9 months)
Nadine shares -
"I've had 3 miscarriages and 1 ectopic pregnancy in my left tube. That one, I was told by a male reproductive endocrinologist, was a miscarriage that needed to run its course because by his observations there was "nothing there."
The unconventional circumstances of Ozzie's birth, and the exhausting daily trials of parenting, sort of eclipsed any potential insecurity. Having a child— not even considering that he's a child with special needs and an obvious facial difference— has made me much more open-minded and peaceful about body image. My hips got bigger and it makes him easier to carry, which makes me feel connected to him. When I carry him and my shirt rides up and my little belly looks awkward, it feels good to be that open. I look at myself now and wish I had that kind of peace not just when I was younger and thinner and ostensibly hotter, but during my pregnancy. Because of my previous losses, I was unable to enjoy the sensations of pregnancy, or my changing body. The last month, when I knew Ozzie was actually on his way, I embraced it a little more; began to feel fabulous and strong and gorgeous and round. I loved the way clothes fit me at 9 months pregnant. And now, when I see photos of my pregnant body, I can marvel at it. I wish I had that appreciation and wonder while it was happening.
After he was born, I was not only initiated into new motherhood but the small community of parents of children with rare diseases. So there was no way the reality could be compared to anything I expected. Nothing can prepare you for that. I had spent so much time worrying about EVERYTHING that could happen— from miscarriages to stillbirth to development problems in his adolescence— that, obviously, Goldenhar Syndrome (a completely random craniofacial disorder seen in only 1 in 12,000 babies, and undetectable on genetic tests) hadn't been on my radar. So the first few months were a terrible cocktail physically, mentally and emotionally. There was the more standard recovery, exhaustion and fear. Then there was the grief, anger, guilt and ambivalence of what I had "done" to our baby. For the first three months I forced myself to focus on only Ozzie's immediate needs while drowning in those feelings, becoming obsessed with the disorder, bitterly congratulating myself that I was "right" for knowing something would go wrong. Months out from that, and knowing Ozzie and myself so much better, I forgive myself for those feelings.
There is no control. It's a matter of how you deliver that line; I could either shake my fist at the sky and wail "I did everything right and this STILL HAPPENED!" Or I can shrug, smile and say, "I did everything right and this still happened." That way allows you to be happy. There is only so much we can control about pregnancy; no matter the preparation or scientific interventions, it will always end up as a series of biological doors that need to open and close at precisely the right time. It's amazing that ANYONE gets here. There is only so much we can control about the birth process; I had the most capable team overseeing that 28 hour process and Ozzie still had the cord wrapped around his neck, and had swallowed meconium and needed to be intubated. And of course, there is only so much we can control after a baby arrives; my OB never saw the Goldenhar during Ozzie's ultrasounds or the genetic testing. It was a complete shock to everyone. Babies come on their own terms, and they aren't here to serve our vision of how the world is supposed to work. We can't control any of this, we can only accept our lives' accompanying joys and tribulations.
I have always been touched by the Project; wanted to be friends with the women who participate and connect with other women who might understand the difficult journey of bringing a baby here. I adore the vision, one that emphasizes and celebrates difference. I am passionate about women's stories, and the way they shape our sociopolitical climate. I want people to see my beautiful, brilliant, independent boy Ozzie, and consider how they view, talk about and embrace difference in their own lives. I want Ozzie to grow up valuing difference and fighting for the dignity of others, and I hope being a part of this will one day add to his moral, emotional and political foundation.