Last night I dreamt that Fiona walked. Just stood up and toddled around, nearly a foot taller than she really is. The dream was all fog and blurry vision, but just like that, she walked.
In waking life, Fiona is nowhere near walking. She still prefers lying flat on her back, arms fisted, eyes staring at the ceiling. She’ll pull herself up to sit, grab for something, lie back down. Gravity is her ruler. Against it, her willowy body has trouble putting up a fight.
Everyone’s talking calories. We have met with a nutritionist, a dietician, a GI doctor. We have talked with her pediatrician and her feeding therapist and her early interventionist. Fiona is not taking in enough calories. I know because I add them up each day in a little book. A friend of mine gave me the book for my own writing. Instead, it’s filled with calorie tallies. As is my brain. I know by heart the calorie counts of all the foods Fiona likes. Slice of wheat bread, 100. Jar of sweet potatoes, 80. Jar of peas, 50. Stick of mozzarella, 80. And on and on. Today we are at 210. It is 3 pm. We might make it to 600. This is how I count the day’s progress: in calories.
A nutritionist from Burlington drove three hours to see us. Her conclusions: we are doing an amazing job. We are doing everything she would recommend. We are doing all that we can.
You can’t force her to eat, the pediatrician says.
No, but you can force the food into her through a tube.
And so the question: does she need a tube? Her body is a willow tree. She grows long but never wide. Three-month pants still fit her waist, even as they don’t go past her shins. This is typical for kids with Wolf-Hirschhorn. String-bean-shaped, I call her. But is she getting all the nutrition she needs? Would she have more strength if she could get more? I tend to her string-bean body all day long. I dress her and change her diaper. I adjust her body’s positioning so that it’s ideal for her development. I offer spoon after spoon of food. Most of the time, she refuses.
This person says we need a feeding tube. That person says it’s not worth the risk.
This person says, from a nutritional standpoint, there’s nothing to lose by getting a feeding tube. That person says, for every child that takes well to the tube, there’s another one who has complications. So far, no doctor says it’s time for the tube.
You need to eat, we say all day long to her. When I leave the room to meditate, Justin’s voice cuts through the closed door. You need to eat, I hear from my cushions. I inhale, repeat my prayer word, exhale. I don’t pray to ask for things to be different. I pray to accept them as they are. And still, You need to eat. If we have really hit our limit, if it’s evening and we’ve already tried six times that day and already offered hundreds of spoonfuls and already know that today’s tally in the little book (the book that was meant to house my writing but instead houses calories) reports a dismal day, we say, You need to eat, or we’re going to have to drill a hole in you. We don’t say this to be mean. We say it because it’s true.
Actually, I don’t know if surgery for a g-tube requires drilling. It probably doesn’t. But the tube seems that gritty to me. That crude.
Last night I dreamt she got up and walked. Today she nearly cries when her physical therapist picks her foot up and sets it down a few inches in front of her. She wavers. She has no balance. She wants to sit down. She wants to succumb to gravity.
Has there been any talk of a g-tube? the physical therapist asks, and I sigh, and sense that if she were the doctor, she’d order one stat.