J3E Press

I lift her up, and her tongue sticks between her teeth, eyes bulging and fingers clutching the pink toy with as close to white knuckles as she can get… She knows what’s coming, heard me practicing under my breath, knows I’m lifting her for the song.

“Vol-ume UP!”

The toy speaks and then I do, my cadences as good an imitation of the artificially cheery tones as I can make it. She explodes on the UP, can’t contain herself anymore, and her whole body shakes with laughter. The kind of laughter that at first sounds like she’s about to cry, the one that makes you turn your head in alarm and sets your pulse racing, afraid she’s tripped or bitten her tongue, before the fear turns to exasperated joy. It hasn’t been that long she’s been laughing this way, that she’s had laughter that was more than just being distracted from the pain, laughter that was the innocence of not-hurting and not-fear, the chance to not-want to communicate a damn thing to us because there is nothing she needs us to do but somehow communicates so much more because of it.

“Sing a song of six-pence…”

I try to start with the rhythms of the song from the album she loves, try to make it some hybrid of the song she loves at night when we’re trying to get her to sleep and the cartoon we use to convince her to eat in the day. But in the end no matter how many times I hear it the rhythms are tuned to the beat of her heart, and I’ll never get that melody completely right.

“The king is in his counting house…”

My wife can get some mockery of counting coins down in miming, she can make it seem like the gold is just behind her fingers, palmed as a part of a magic trick. But me, I focus on carrying her and bouncing her supported by my left hand against my body, and my right hand just kind of bobs in the air, shoulder high. This isn’t about performance, for me, so much as echoing other, better artists she appreciates. I’m a cover band, not a reinterpretation.

“… eating bread and honey…”

The Queen I have down a bit more. I use the sign for ‘eat’, and though I am sure this makes even less sense to someone that has never eaten anything more solid than yogurt and always just a step away from choking, the idea of ‘bread and honey’ must be further from ‘eat’ than gold. At least if she puts a coin in her mouth she knows it’ll come out before it stretches her stomach…

“...hanging up the clothes…”

Now my hand dances in front of her eyes, and she knows it is coming, struggles to interpose her hands in front of her face to block, but soft, knowing I will just push them aside.

“Along comes a blackbird and NIPS off her NOSE!!!”

And my fingers dip and weave past her clumsy hands and unwieldy toy to capture her nose before it dances away.

I always mean to show her my thumb between my fingers, like they do in the movies, but it never seems necessary. She ducks her head into that smile wider than her shoulders, eyes watering from the humor of it all and the laughter causing milk-spit to spill from her mouth and down my arms, held now above my head and then rapidly dropped down, the fall causing the laughter to start all over again. I can hear in the other room my wife mock-angry, asking me if I am going to bring her in to eat again, calling us Knuckle-Head One and Knuckle-Head Two. But I know despite her iron-clad will on mealtimes and feeding schedules she doesn’t mean it. My daughter’s laughter is contagious in a way that forgives and is forgiven for anything and everything. We need that sound, that laughter, that crackle of hope in her own private joke that she can never explain to those of us limited to words.

We need to know she is happy, that all the surgeries and the therapy and the medicine and the morphine withdrawals and cannulae and oxygen tanks are worth it, that her life is worth it, that she enjoys it. That she has more than just life, she has the chance to live, despite it all. We need to know that the patched heart and pulmonary hypertension, the Down Syndrome and the autism and the vague warnings of some other cognitive problem as yet undefined, the feeding problems and the hospital beds, the doctors warning us she’d die without invasive procedures we refuse to authorize, they all were, if not totally behind her, at least were crises to recover from and not a tragedy we were building up to. We need that more than her, I think...

“Vol-ume DOWN! DOWN DOWN DOWN DOWN DOOOOWN!”

And I swing her into the kitchen to her feeding chair, where her iPad waits and droplets condense off the bottle. And she collects herself with visible effort, willing herself into a solemnity that I know won’t last. Though I know her laughing will make this feeding last twice as long as it should, with a greater than zero chance of mopping something off the floor afterwards, I don’t regret it. None of it at all.