“I respect your opinion, Dr. Berg, but she’s going to make it through this. I’ll see you at rounds tomorrow.”
I saw that Kari’s family had arrived in the waiting room. It was Kristen’s birthday, and I know some of the family were holding out hope that Emily would not die that day because it would forever make it a sad observance, not a celebration. I couldn’t believe Lindsey was there. She was so obviously pregnant, and it couldn’t be comfortable for her to be sitting in those plastic chairs surrounded by people who were in mourning.
I would only allow people in the room one at a time because I agreed with Kari that we didn’t want there to be too much going on in that room, as it might drain Emily. I coached people before they entered that when they saw her it would be hard not to fall apart. They had to wait until they felt that they could be strong for Emily, and for Kari. They could see through the glass walls of the PICU that Kari had a scarf around her head to block out the noise of the ventilator and had crawled into the bed next to Emily, carefully twisting her body around the tubes and wires. It was so sad to see this, and at the same time it was such an act of love between mother and daughter.
Kari’s mom, Pam, said all the things I thought Emily needed to hear: that she was loved and that she was needed, and that she had to fight with all she had to stay with us because we didn’t know how we’d go on without her. That clear-eyed pragmatism that Kari had depended on the day Emily was diagnosed was with Pam at Emily’s bedside. She stayed steady and said the right things, no matter how much she was grieving inside.
Robin was next into the room, and I’ll never forget the look of shock on his face as he tried to compose himself to speak.
“Miss Em,” he said softly. “I know you are going to pull through because we haven’t finished our art lessons. I’m still not very good at drawing SpongeBob and I need your help to draw houses right. Miss Em, I need you to keep teaching me.”
There was a stir in the hallway when Jim and Greg arrived with Aunt Sally, Becky and Ariana, and the other girls, all still agitated from their high-speed journey. Jim and Greg stood still in the hallway, taking in how Emily looked. Aunt Laurie had arrived a few minutes before. She said to them, “There’s no way she survives this. There’s no way. Kids cannot survive this.”
When Becky saw Emily through the glass to her room, she had to duck out to the bathroom to throw up, she was so upset by what she saw. She had a hard time reconciling the memory from a few days before of the playful way they had washed Becky’s car in Kristen’s driveway, squirting each other with the hose, with the bloated figure clinging to life on the other side of the glass. Becky knew she had to compose herself because she has no poker face, and she needed to be stronger than that for Emily. This would take a lot of her self-control, and she didn’t know how much she had in her. Becky was certain that she and the others had come to be with Emily when she died because, once she saw what Emily looked like, she believed there was no way Emily could pull through.
Aunt Laurie was agitated, more so than I’d seen her, even with all the times we had hit a terrible juncture with Emily. She’d just come off a monthlong rotation at the pediatric intensive care unit at Hershey, which was framing her idea of Emily’s chances. She wanted me to have a sober and realistic sense of Emily’s odds, not to gin myself up with hope, because the fall from that would hurt so much more.
“I’ve never seen anyone this sick before, Tom,” Aunt Laurie said. “When you have the beginning of multiple organ failure and all of these medicines to support her blood pressure, it’s unlikely she’ll make it.”
“She’s still in there,” I said. “I know the fight in my girl, and I know she’s not giving up. It is not her time.”
“They’re just keeping her alive on machines,” Aunt Laurie said.
Kari started to sob quietly. She knew the truth in what Aunt Laurie was saying. She’d said almost all of that to me. Hearing someone else describe the circumstances Emily faced released some of the sorrow Kari expressed in those tears.
“I’ve watched six kids die this month, and it was heart wrenching for those families, and for everyone who cared for those children,” Aunt Laurie said. “You have a tough decision to make. You don’t want to prolong this suffering.”
“We’ve said many times we’ll only let her suffer when we know it’s leading to a cure,” I said. “All this and she’s still alive. She’s going to be cured.”
“Look at the two of you,” Aunt Laurie said. “I’ve never seen you further apart since Emily got sick. Tom, you’ve always had a way of bringing Kari up, but you can’t do that here. You’ve got to get on the same page here.”
“I don’t think we can,” Kari said.
“You have to sign a Do Not Resuscitate order. I’m saying this for her and for you, too,” Aunt Laurie sad. “I’ve
