'There is a third thing you must do,' says Miss Rumphius to her grandniece. We would sit next to him, reading it over and over, while they tried desperately to fix yet another IV line that had failed. We would read it to him when the nurses woke him up trying to change his TPN bag, after he'd finally gotten to sleep. I would carry him up and down the dark halls sometimes, Nathan in one arm and his IV pole in the other.Īnd there was this book, Miss Rumphius, which became his favorite. A nurse's boyfriend was a garbageman and he took videos of his route for us, and Nathan would watch them over and over. There were a very few things that could give Nathan a little relief during those endless nights.

It felt like only Dante could have invented a hell like this. Those were the hardest nights of our lives. There were times when he was up all night long, crying for water, and we couldn't help him. There were a few - we couldn't even give him water, because there was nowhere for it to go. This is Steve, one of many wonderful nurses. He careened through the halls on a motorcycle, racing the other children. He got a toy medical cart and he ran to nurses and checked their vital signs. Nathan wasn't old enough yet to feel that this was unfair. We ran after him through the halls, pushing his IV pole.īecause through all of this, he was still running. We lived in the children's ward at Cornell in New York City. Hole after hole appeared in my child's body. They inserted a G-J tube so we could pump sustenance directly into his intestines. They cut his pyloric valve to help his stomach empty. Wronger.) They put a central line into his artery so they could feed him TPN, which is fancy Gatorade. Each time, I thought: this could be the time when things go wrong. Again and again I walked him into the operating room, clutching his teddy bear, so the surgeons could try procedure after procedure. He grew weak and pale, surviving on an IV drip. It's called gastroparesis, and it was just bad luck. Nathan's stomach stopped working altogether. What followed was a month-long nightmare. Over the next year, he had two operations to pull everything back down and tighten that hole. All things considered, this is a fixable problem. His stomach, and most of his intestines, had slipped up around his lungs. He had a hiatal hernia: the hole for his esophagus was too big. It could be bad or it could be the end of the world. There's a universe of possibilities about that shadow. What could the shadow be? It could be anything. 'We saw a shadow on your son's lungs,' is what they told us.

Miss Rumphius by Barbara Cooney