Sleep No More
Lesley Farlow
Word Count 715
Abandoned babies quickly learn not to cry. I’ve heard it’s a survival instinct when predators lurk. They stay silent. They sleep. My adopted daughter, abandoned by the side of the road at the age of two months, slept through the night as a baby and toddler. That is, until toilet training began and things went south in the sleep department. Once she made it into big girl underpants, though, she went back to sleeping soundly.
The exhaustion of being a single mother working full-time left me stealing nano-second car naps when stopped at a red light, a loud honk jolting me awake as the light changed. But my daughter slept in the back seat, slept in the backpack on long walks, slept in her bed.
That all changed early one morning when she was eleven. “Mama! Mama!” I heard her sobbing as I surfaced from my weekend morning stupor. She was sitting on the floor next to her bed, unable to stand, pointing to a lump on her inner thigh just above her left kneecap.
“I can’t bend my knee,” she wailed.
Ice, ibuprofen, rest. Nothing seemed to help. The next day, a Sunday, I took her to the pediatrician. The doctor on call, formerly a pediatric oncologist, examined her and said, “This is something. We’ll have to do some tests.”
The MRI report came back with the words “concerning findings, can’t rule out cancer.” There was more, but it was a blur. The doctor was able to get us an appointment ten days later at Boston Children’s Hospital. My daughter went back to school, limping. I stayed awake every one of those ten nights, researching all the gruesome possibilities that might cause a radiologist to write “concerning findings.” I researched the prostheses that Special Olympians use for running. The internet served up nothing but torture. I found it hard to think of anything else.
At Boston Children’s Hospital the lovely, comforting doctor we spoke with told us it looked like it was a venous malformation, uncommon but not rare, and treatable. The first surgical treatment to shrink the malformation took place a month later. It was painful. She went back to school on crutches for a couple of weeks.
A month later, in the middle of the night, I heard, “Mama! Mama!” I ran into my daughter’s bedroom to find her crying and holding her leg. “It’s frozen, Mama. I can’t bend it. It really hurts,” she said. I massaged it gently and put an ice pack on it. I rubbed her back and sat with her for a half hour until she finally went back to sleep.
Not once, not twice, but over and over, for three years, I woke up to my daughter crying. My hearing had become finely tuned to even the gentlest of sobs coming from her room. I got up without a blink or a sigh. I rushed in, did my best to comfort her, and went back to bed. The ceiling offered no answers and little comfort as I stared at the gradually softening shadows, until daylight and the alarm clock finally shoved me out of bed.
After five painful procedures, doctors conceded they weren’t working. However, there was a diagnosis that had just become available for venous malformations that didn’t respond to treatment. Her case fit the criteria for this extremely rare disease, and they thought it could be addressed surgically. They removed the avocado-sized malformation. It grew back. They removed it again. It grew back in a different form.
By now, we were on a journey that had no predictable trajectory. Night after night, throughout high school, my daughter lay awake in pain, not wanting to wake me. But I knew. I no longer closed my eyes with the expectation of a night’s rest. I was up, my heart pounding, at the first gasp coming from her room.
Fifteen surgeries later, she is now a young adult, trying to manage the pain and other symptoms on her own. She no longer sleeps in her childhood bedroom in our house, but I know when to wake up. Even before I hear the thump of her 5 a.m. text. “Mom. It’s bad. I haven’t slept at all.” Now, we both stare at the ceiling.
Lesley is a performing artist, writer, and movement educator. She has performed Off and Off-Off Broadway, throughout Europe and the U.S. As a writer, she has published reviews and texts on dance, and her performance monologues have been heard on stages all over the country. She is currently writing a book about AIDS and the downtown New York dance community and lives with her family in western Massachusetts.