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Spirit Story

A Christmas vigil

By Martha ter Kuile

Her oxygen mask has been removed, but there is a tube propped on a teddy bear just under her mouth and nose, so that she can breathe more easily. Machines keep track of her heartbeat, blood pressure and oxygen levels, all gently declining.

I bend sideways to get into a picture with Paula and Daisy — one of those grandmother-mother-daughter photos. My daughter Paula and I are wearing paper hats. Daisy, 3, is in new Christmas pyjamas, eyes closed, her blond curls brushed out onto the pillow around her head.

For the past week, Paula and her husband, Scott, have been living at Toronto’s SickKids hospital in their own special parents’ room across the hall. The rest of us are in and out, making the sad trek to the seventh floor. We take turns patting Daisy’s face, holding her foot and kissing her. There’s no way to find out if she knows we are there, as she drifts along quietly under a pink flannelette quilt.

A nurse comes in to give her morphine. By afternoon, Daisy’s room is crowded. We pull in more chairs and perch awkwardly around her bed, passing around a large bag of popcorn. Sometimes we laugh, and sometimes we cry. A couple of us have been up all night, holding an anxious yet tender Christmas Eve vigil. She amazes us with her persistence, though, so here we still are, together on the worst possible Christmas Day.

At my house, the table is set for a family dinner, but we abandon our plans and bring all the presents down to the hospital. Cousin Elsie, who is also three, receives a set of My Little Ponies. She lines them up on Daisy’s bed, and each pony takes a turn galloping up and down the quilt, as Daisy breathes on.

A nurse wearing angel wings sets a table for us, filching Christmas decorations from around the ward. We are given vouchers for the turkey dinner down in the cafeteria, and an expedition sets out to bring back seven plateloads. Gravy. Stuffing. Little white cups overflowing with cranberry sauce. Slices of pie. Oddly, someone has chosen samosas instead of turkey, and they are a hit. A new tradition perhaps.

I have brought Christmas crackers from home. When we snap them, every paper hat but one is yellow — yellow, the colour we have worn on other occasions in honour of microcephaly, Daisy’s main problem. We put them on laughing, the yellow a funny little Christmas miracle. Strange that there can be some miracles but not others.

After dinner, Paula and Scott take a walk — it’s a smoke break but nobody criticizes. Others give Daisy a hug and go home. I sit with Daisy savouring the quiet, and the swishing of the air tube. The night-shift nurse comes in; she has brought her ukulele: Blackbird singing in the dead of night / Take these broken wings and learn to fly / All your life / You were only waiting for this moment to arise.

Daisy May McCuaig died on Jan. 3, 2016, her fourth birthday.

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