Just before 7 a.m., Pamela Block's iPhone alarm chirps on the kitchen counter. She has been awake since 3:30. She tried to watch a movie to fall back asleep. She Googled retinitis pigmentosa and worried. She moved the Elf on the Shelf she hadn't moved in three days.
The 53-year-old mother makes her way to Anna and Lily's bedroom. "Who's awake?" Silence. "Time to get up. … Who put underwear on the teddy bear?"
She knows Anna, 11, will have an easier time moving. Lily, 9, has a heart condition and a genetic mutation that causes her to lack muscle strength. Pamela knew Lily had medical issues when she adopted her in 2008. Since then, subtle symptoms have added up to mysteries without answers.
"Annnnaaaa," Pamela says in her nice-mom voice. Silence. She flips on the light. "Anna," she says in her mom-is-serious voice. Silence. "I'm up, Mommy." She's not. "You're not." "I am!" Anna slides down the bunk-bed ladder wearing a pajama shirt and an adult pull-up diaper. She has bladder exstrophy. At birth, her bladder was inside out and poked out of her belly. She has had multiple surgeries.
Pamela had no plans to adopt two girls from China with medical needs. She had given birth to a son who is now an adult. But she believes in a Chinese saying that a red thread binds people who are destined to be together. In her work as an advocate for disadvantaged children, hundreds, maybe thousands, of children's pictures have crossed her computer screen. Twice she has seen photos and felt the pull.
Pamela and Anna go to the bathroom. Pamela unwraps a catheter and helps Anna empty her bladder through a port in her navel. They cleanse the tubing with a large syringe of water. Anna brushes her teeth, throws on her school uniform, and any sign of her disability is gone.
Lily is sluggish. She is often dizzy and tires easily. She always seems to have headaches and stomachaches. In a few weeks, they will get back the latest genetic test results. There is a 50 percent chance she also has retinitis pigmentosa, a rare condition in which cells in the retina don't work the way they're supposed to. If she does, she will slowly go blind. Lily spends a few extra minutes sitting at her vanity before she puts on her school uniform.
Pamela works in the kitchen and lets her thoughts ramble. The dog needs eye drops. The laundry is piled up. She needs to finalize plans for a work trip before the plane fare goes up. Lily likes red onions on her sandwich; Anna will want tomatoes and cucumbers. Pamela's younger brother died suddenly two weeks ago. How can he be younger than her and already be dead? She needs to increase her life insurance. Anna likes peppers for her school snack. What will she do if Lily goes blind?
Pamela breaks the kitchen silence, feigning surprise. "Oh my gosh, your elves moved!" "Yeah," Lily mumbles. "Mom, you already told us that you move them. You can't take that back," Anna says. "Yeah," the mother replies. "I'm guilty."
Lunches packed. Backpacks ready. Kids loaded into the car, dropped off at school. Pamela is driving home, half listening to radio DJs, when a car turns into traffic closer than it should. A woman shoots her a dirty look. Pamela drives in silence for a few blocks, then speaks: "You know, before you make a rude comment or judge someone, or cuss at them in traffic, you could just pause and consider for a moment there may be a reason they are distracted. …You just never know what someone is dealing with. A lot of people are struggling with things you just don't see."
Contact John Pendygraft at [email protected]. Follow @pendygraft.