When our daughter was born and we discovered she had a craniofacial birth defect, it was earth shifting. Everything I knew and thought I knew changed. I recall not truly realizing what it meant. She was born without an ear canal or outer ear, a craniofacial birth defect called Atresia/Microtia. What is this? What does this mean?
The reality sunk in all too soon when she was wheeled away from me to have her newborn hearing screening done. One side wasn’t testable because it was closed. The other side? She failed it. Twice.
Becoming new parents is huge. Becoming new parents of a special needs child is something else entirely. Capt and I experienced, simultaneously, the fear that accompanies a calling: “Am I strong enough? Are we?” Something unlocks inside your soul, and you slip uncomfortably into one of two places: strong enough, or devastation.
I watched her every second for a flinch, a twitch, something to show me she wasn’t deaf. In those first few days, the flinch never came.
Exhausted from typical newborn baby struggles coupled with the stress of creeping fear, I left her and Capt in the room to go put pajamas on and brush my teeth. I looked up at myself in the mirror, mid-tooth brushing, with a vision of myself as the parent of a deaf child. I cursed myself for not paying closer attention in my college sign language class. And then I cried. Hard. The kind of cry that comes from a place in your heart you’ve never been. Holding it together wasn’t available to me in that moment. There was nothing for me to hold together. I was empty. All the thoughts and fantasies about the child I had with the man I love and call my husband circled the drain with the water in my sink. This isn’t what I signed up for. How did this happen? Why? What now?
What rose out of that huge empty space, the place where who I thought I was, who I thought WE were existed untouchable, is the marriage we have now. A fundamental shift occurred after the birth of our daughter and the weeks of uncertainty that followed. United in a shared experience of fear, longing for might-have-been, and the vast unknown that lay ahead, his was the only hand I could see and feel in the dark, questioning space I found myself in. “Help me. I’m falling apart, and I can’t find any of my pieces.” Time after time in those first weeks, I would reach out blindly and his hand was always there. I don’t know how he did it, because I know he was falling apart too. He carved out a piece of himself for me to gather strength from. I know it must have been painful.
There’s something that happens to you when you no longer have the luxury of wallowing. The shift happens. It’s about standing in the new space created by the circumstances you find yourself in, and making it yours. This is what survival feels like.
In following years of learning what this meant for all of us, we found our way beyond survival and began to carve out the relationship we have now in that formerly empty space of fear and longing. What can arise out of the darkest time is sometimes the most important and changes the trajectory of your life. The child we have now; the strong, happy, loving, hard-of-hearing (not deaf) girl whom we wouldn’t trade or change for anything, the integration of her and her unique needs into our lives (the fear is gone!) and the relationship we found in those early days of parenting made us the family we are today.