about the future. You cannot live in the moment when the moment is a diabolical time.
âDad still thinks we should crowdfund,â Lindsey says. Her parents have given us twenty thousand. âYouâve got the contacts.â She looks past me, checking Ariel, who is still deep in Frozen , clutching her second- or third-bestmonkey. âSheâs notâ¦I donât want her to perform for it.â
Ariel scratches her cheek where the tape itches. The clamp on her tube sways up and down.
âNeither do I.â I find the thought of the crowdfunding video hard to bear. We canât let a sick four-year-old plead. I canât write that script, or frame Arielâs face while she says it back to me a line at a time. She would do it, without a second thought. âIâll get people to push my payments. Weâll make it, with that and the credit cards.â
The editors Iâm writing for will pay early, on delivery if I ask them. We have a good history and they know Ariel, or know of her. Right now they are buying stories from me because I am offering them, simple as that. Iâm crowdfunding in my own way, without Ariel doing a piece to camera.
If I told her Iâd help her crowdfund for anything she wanted, she wouldnât say this. She might say stables. Itâs a real possibility. Stableswith at least one good chestnut pony. Stables, a grotto, a waterfallâsheâd love all of those. We should be crowdfunding to buy Drakeâs place, not for exotic treatments.
But the signs are good. The fear is still there for Lindsey and me, but we have stepped back from its sharpest edge. Arielâs blood work is strong, her weight has stopped falling and, so far, every child in the program with her stats has made it. These are good odds.
The feed is ready. Lindsey canât help herself and touches the bag to check. The feed needs to be warm but not too warm.
âIâll take this one,â I tell her. The pouch of liquid is body temperature in the palm of my hand, like a living thing. âYou get some sleep.â
âReally?â
She looks past me at the day blasting in through the window, the water towers and scrappy rooftops below us, New Jersey across thewater. She yawns again, a big jaw-dislocating python yawn. She gives me two thumbs up.
âExcellent,â she says. âNot a great night here, but I figured there was no point in calling.â
âWeâll have breakfast and Iâll take her to the park.â
I can tell sheâs about to bring up the risk of infection, but she stops herself. Arielâs white cell count is good enough now, if we take precautions. That was yesterdayâs news.
âYou didnât sleep either,â she says instead, because itâs decent to note it.
âIâll sleep after the treatment.â
She puts her hand out, touches my arm, then drifts into the dark bedroom without a word.
As Iâm setting up next to Ariel, I can hear Lindsey flop onto the bed and roll over. For the first time in hours she is not responsible, and has instantly thrown all switches to sleep. Itâs an ability I wish I had.
âAre you ready?â I try to keep my voice down, and it accidentally comes out in a whisper.
âYeah,â Ariel whispers back. She has her Frozen figurines in front of her on the glass top of the coffee table, and she sets Olaf down with a clunk. âYouâll sit next to me?â
âAll the way.â
I would pay fifty bucks, if I had it spare, not to see Frozen one more time. Once weâre through this, all of us, long through it, a single frame of that movie will bring me right back here to this room. It could be forty years, and Frozen will smell like feeding formula and feel like Beacon carpet.
I attach the syringe to the tube, release the clamp and draw up yellow gastric fluid. I swing it around to the front for Ariel to check.
âGood to go,â she says.
âDad still thinks we should crowdfund,â Lindsey says. Her parents have given us twenty thousand. âYouâve got the contacts.â She looks past me, checking Ariel, who is still deep in Frozen , clutching her second- or third-bestmonkey. âSheâs notâ¦I donât want her to perform for it.â
Ariel scratches her cheek where the tape itches. The clamp on her tube sways up and down.
âNeither do I.â I find the thought of the crowdfunding video hard to bear. We canât let a sick four-year-old plead. I canât write that script, or frame Arielâs face while she says it back to me a line at a time. She would do it, without a second thought. âIâll get people to push my payments. Weâll make it, with that and the credit cards.â
The editors Iâm writing for will pay early, on delivery if I ask them. We have a good history and they know Ariel, or know of her. Right now they are buying stories from me because I am offering them, simple as that. Iâm crowdfunding in my own way, without Ariel doing a piece to camera.
If I told her Iâd help her crowdfund for anything she wanted, she wouldnât say this. She might say stables. Itâs a real possibility. Stableswith at least one good chestnut pony. Stables, a grotto, a waterfallâsheâd love all of those. We should be crowdfunding to buy Drakeâs place, not for exotic treatments.
But the signs are good. The fear is still there for Lindsey and me, but we have stepped back from its sharpest edge. Arielâs blood work is strong, her weight has stopped falling and, so far, every child in the program with her stats has made it. These are good odds.
The feed is ready. Lindsey canât help herself and touches the bag to check. The feed needs to be warm but not too warm.
âIâll take this one,â I tell her. The pouch of liquid is body temperature in the palm of my hand, like a living thing. âYou get some sleep.â
âReally?â
She looks past me at the day blasting in through the window, the water towers and scrappy rooftops below us, New Jersey across thewater. She yawns again, a big jaw-dislocating python yawn. She gives me two thumbs up.
âExcellent,â she says. âNot a great night here, but I figured there was no point in calling.â
âWeâll have breakfast and Iâll take her to the park.â
I can tell sheâs about to bring up the risk of infection, but she stops herself. Arielâs white cell count is good enough now, if we take precautions. That was yesterdayâs news.
âYou didnât sleep either,â she says instead, because itâs decent to note it.
âIâll sleep after the treatment.â
She puts her hand out, touches my arm, then drifts into the dark bedroom without a word.
As Iâm setting up next to Ariel, I can hear Lindsey flop onto the bed and roll over. For the first time in hours she is not responsible, and has instantly thrown all switches to sleep. Itâs an ability I wish I had.
âAre you ready?â I try to keep my voice down, and it accidentally comes out in a whisper.
âYeah,â Ariel whispers back. She has her Frozen figurines in front of her on the glass top of the coffee table, and she sets Olaf down with a clunk. âYouâll sit next to me?â
âAll the way.â
I would pay fifty bucks, if I had it spare, not to see Frozen one more time. Once weâre through this, all of us, long through it, a single frame of that movie will bring me right back here to this room. It could be forty years, and Frozen will smell like feeding formula and feel like Beacon carpet.
I attach the syringe to the tube, release the clamp and draw up yellow gastric fluid. I swing it around to the front for Ariel to check.
âGood to go,â she says.
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