Janet Landis In March of 2018 my son died after years of hospitalizations and procedures to treat his neurodegenerative disease. Often it still feels unreal that he can be gone. I am a nurse and for 20 years, I was Dan’s nurse. Sadly, the last months of his life were very difficult and I wishContinue reading “Op-Ed on Palliative Care”
Category Archives: parenting
What dreams?
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?”
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”
Dan’s daily life
It has been fifteen years since my son Daniel’s diagnosis of Ataxia-Telangiectasia. Dan’s day typically starts with coughing. He coughs on and off over night and his cough is relentless throughout the day. Dan requires help to get out of bed each morning. He needs assistance to sit on the edge of the bedContinue reading “Dan’s daily life”
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”
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”
Thoughtful blogging.
My last blog post wasn’t very thoughtful. Hopefully people read all of it and didn’t stop with my whining and complaining. (oh wait, that WAS all of it! : D ) Nothing in life comes with guarantees, and I’m very lucky to have the wonderful husband I do. The fact that I get triggered is myContinue reading “Thoughtful blogging.”
Resiliency and vulnerability
Listening To Shame is a talk by Brene’ Brown. (www.ordinarycourage.com). I’ve linked to it, because this is a talk I took notes on. Sitting at my dining room table (when I should have been making my family a fantastic dinner) I took notes on her talk so the words would be on paper for me toContinue reading “Resiliency and vulnerability”
Transitions
My oldest son left for a week yesterday. He’s vacationing with a friend and his family, people I really care about but don’t reach out to enough. I had tears in my eyes when he left, even though it isn’t “cool” to miss your teenager. (especially when it’s only for a week) He bring soContinue reading “Transitions”
Writing as a profession
I’ve been away from blogging and writing for weeks now, and it has had a definite impact on my overall view of myself and my life. Writing has always been important to me, as it is for many of us. It is stated in countless books about writing that for some, if not all authors,Continue reading “Writing as a profession”
An Unexpected Life 