It’s not enough for them to survive. I want them to drive me nuts. I want them underfoot in the kitchen when I’m trying to cook. I want to have to kick a path through the pile of sneakers at the front door.
He stirs in my arms, skin-to-skin for the first time, sweet Liam. It’s a delicate operation—a tangle of wires, a half-dozen IVs protesting with a chorus of urgent beeps. Never mind that, assures the nurse, resetting buttons on machines that speak to her in a bewildering language in which she is fluent. I hear it in my sleep, she tells me, smiling. The chorus of life-machines that speak on behalf of our speechless sons and daughters.
He wheezes as the ventilator breathes for him, a desperate wheeze that would have broken me into pieces just a few days ago. Oh! That. His throat is a tiny bit bigger than the tube, so the air is wheeshing around it, she offers cheerfully. Look at his stats—this number here, and that line right there. He’s a happy boy.
Looking down at him I feel it, ferociously. I should be grateful for any spark of life, life in any form. But love sinks into me, fuses to every fibre. Love makes me greedy.
I want the world to be as vivid and as accessible for them as it is for us, unhindered by disability. Is that too much to wish for, and to want it so badly? To wish for them to overflow with ordinary life, with school crushes and soccer practice and stinky socks?
“I saw the doctor,” said my husband. “They had a good night. Ben’s still off the ventilator, and he’s all tucked in. And they’re going to fix that valve on Liam later this week.”
“You mean like, heart surgery?” I asked.
No matter how acclimatized we feel with each passing day, I am still knocked off my feet. Unable to accept that this is our life now. That the morning news includes that.