Scroll down for parts 1-7. More to follow.
So, Tuesday morning, I suggested to J’s mother that she should start looking into flights. Lilah would not be allowed to go home until she was fully off the oxygen. She was much perkier and ready to play, but she was so congested that her oxygenation levels kept slipping. There was no telling when we’d be good to leave, J was in crunch mode at work, and the boys were rapidly becoming compost.
Wanda to the rescue again, picking Zach up from school and bringing him in to visit me. I didn’t let the boys see their sister, both because her tubes might scare them and because they were the little germ carriers who had put her in this position in the first place, so I thought it best for them to keep their fresh batch of germs to themselves.
Tuesday evening, I saw another mother in the hallway. “You’ve been here since Friday, too,” I commented. She asked why I was there, and I told her. “Why is your child here?”
“He’s the oldest on the floor,” she replied. “He’s twelve.”
“What’s wrong with him?”
“They think it’s cystic fibrosis,” she whispered, clearly in the realm between exhaustion, terror, and numbness. “At least now we have a diagnosis, but they caught it too late to do anything. He’s autistic, too.” She seemed to need to talk, although it was hard because she talked so quietly and I didn’t want to get to close because RSV was all her kid needed. “They think my three-year-old has cystic fibrosis, too.” I kept nodding and trying to sound appropriately horrified without increasing her despair.
“And they think I’m the carrier.”
All of us mothers are familiar with Mommy-guilt. We don’t read to our kids enough. We shout at them too much. We forget to pick them up in a rainstorm. They get pneumonia and are hospitalized when they are two months old. Tuesday night, I saw in that woman’s eyes Mommy-guilt at a whole new level. She blamed herself for killing her kids by bringing them to life.
“At least now we know what’s wrong,” she said. “And we’re going to make sure he has a bitchin’ Christmas.”
J’s mother arrived from D.C. on Wednesday morning. Not the easiest time for her to take off work, but we asked and she came. J went back to work, and Lilah slowly improved. She only needed oxygen when sleeping, a point she highlighted by ripping off the tubing that was taped across her face. We would probably be at the hospital one more night we were told.
The child with cystic fibrosis, however, was going home. Staying at the hospital would do him no good.