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Goldenhar Syndrome Awareness

Meet Ozzie! #littlestwarriorwednesday

Ozzie is our first child, but my fifth pregnancy. Thus, even though the pregnancy was clinically flawless, I was anxious and certain things would go sideways at any moment. The moment he was born and was whisked away, peace flooded me; things seemed ok! Maybe I was wrong! But my wonder was tempered by shock when they brought him back and I saw the little ear with no canal, the asymmetry of his face. Hours later they delivered a diagnosis of Goldenhar Syndrome- It's a rare craniofacial disorder that affects 1 in 12,000 and, in his case, resulted in hearing loss and facial issues, requiring multiple future surgeries. I despaired. It didn't just challenge my vision of motherhood; suffocated by guilt, grief and ambivalence, I believed his life was ruined. That was a year ago. And this one year has taught me, changed me, so much. Ozzie is a joy. He's talented, fun and generous. He makes the toughest-looking strangers smile and wave back. He exceeds milestones and has lots of friends. He loves his school, @strivright , and they adore him. So when I freak out about surgeries, high school or unkind strangers, I see it's only my imagination working fruitlessly to exert control. There's only so much we can control in pregnancy, parenting, life. I get it now: Ozzie will tread his path. My job is to walk with him, not for him. Goldenhar and the little peanut ear are part of who he is. We're very grateful for our experience, our differences, and the opportunity to advocate for Ozzie and all differently abled children. 



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