What dreams trouble your rest, dear heart? Are you dreaming of the spinal tap, so long ago? The endless needle sticks for labs and iv’s? Of the Lifeflights, the ambulance rides? Are you dreaming of the surgeries and the long recoveries? The gasping for breath, reaching out your hands for air you could no longerContinue reading “What dreams?”
Tag Archives: ataxia-telangiectasia
Defying gravity
The tide of your breath rises and falls; the ventilator, the moon, that gathers and releases it. Another night in the hospital. Me by your bed, gazing at you and remembering, as you lay sleeping and dreaming your dreams. Memories come to me in silken images. You; in navy, rubber rain boots, the blue powerContinue reading “Defying gravity”
Running for Dan
I’ve been running since August. I’ve always loved running, but haven’t been able to do it consistently since I had back surgery in my 20’s. Fibromyalgia pain on top of that made running seem impossible. My last race was the Hospital Hill 10k/Half-Marathon in 1987. (www.hospitalhillrun.com) I never thought I’d run in a race again.Continue reading “Running for Dan”
Diagnosis
Steps falter, grief hangs around my neck. “Run for us” the doctor’s say. Wobbling, almost falling, he runs. They are kind. “Are you sure? Are you sure? Are you sure?” “Yes,” “Yes.” “Yes.” The doctor, holding a tiny giraffe, watches his eyes intently. Click, Click, Click it stands, it falls, it stands, it falls. MyContinue reading “Diagnosis”
The Write Life
The one thing I’ve done consistently throughout my life is write. It has always been a source of pleasure as well as giving me a sense of accomplishment greater than anything else I’ve done. There are formulas you can follow that will insure you some measure of financial success as a writer, but most successfulContinue reading “The Write Life”
New day, new job
Today I start work for the first time outside our home in two years. I was up until 1:00, up again several times because of pain, and am now hoping coffee will pry my eyes open enough that I won’t fall asleep during orientation. A part of me wistfully wondered what it would be likeContinue reading “New day, new job”
Losing battles
Confronting the reality of my son’s condition as fatal is a battle that has taken me to the brink of insanity over and over again. Sometimes the grief is so heavy that I don’t think I can bear it another second. Then Dan will cough or crack one of his jokes that make me howlContinue reading “Losing battles”
An Unexpected Life 