When Your Second Child Doesn’t Have a Disability.It hit me on our first night home. I was sitting in bed, a three-day-old baby in my arms and the heavy hush of evening all around me, when I felt it. It hit me like being woken up from a dream, like a clock chime at midnight or like a broken spell. It hit me the way truth always does when you’ve been keeping it at arms length.By the time he made his entrance, I knew his diagnoses forwards and back. I was prepared to have him whisked away from me after his birth.
I was prepared for the five-hour spinal surgery and the placement of a shunt in his brain that would take place just days after his arrival. Even when we brought him home and I watched him struggling to breathe, turning from pale to gray to blue. Even when we returned to the hospital in a panic and learned three months later that he had severe obstructive sleep apnea and would undergo surgery for a tracheotomy. Even when it was hard – I was prepared. But nothing could prepare me for this second time around..Disability But just as the beauty overwhelmed me, the sorrow did too. Because sometimes when you’re flying, you look down. And when I looked down, it was like I could see the other half of myself on the ground below. The half of myself that lived in the Neonatal Intensive Care Unit and wept in the night and feared and despaired. And she was looking up at me. And she was jealous. And she was angry.
I fought gravity, saying “No no no. Disability This is what I wanted. This is where I belong. This is the mother I am supposed to be. Not that woman down below. Let her be forgotten. Let her sink away.” But even my fight was in vain and even my wanting was painful. Because that heavy yearning, that pull towards easy, was hedged in by guilt. Because the things I wanted to forget, the things I wanted to change, were tethered in an unbreakable line to the little boy I loved with a fierceness that trembles me.And so, those first few weeks with my daughter were spent at war. At war with myself and the mothers within me. I tried to strike a balance. I tried to give vent to the grief while drinking in the very beauty that sustained it. I spent my days in a cloud of joy and my nights weeping in the darkness. Every high was a low. Every single easy – the smooth curve of her back unbound by gauze and tape, the morning change of her clothes, where there was no part of her I wasn’t allowed to touch, the steady breathing that just happened without prompting – was a unique kind of hard.Because, without the flying, we might never see the beauty below.
The linking of rivers. The crosshatch fields of purple and green. The connectedness of each crevice and cliff and crag.
And without standing on the ground?
We might never feel the sun.
We might never see the sky.