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”
Category Archives: disablility
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 Mystery of Healing
Many walking wounded (or rolling, as the case may be) are among us. Buddhism teaches that pain is inevitable in life, but suffering is optional. A primary lesson the Buddha taught is that pain + resistance = suffering. It’s not the easiest concept to digest when you or someone you love is in pain. ItContinue reading “The Mystery of Healing”
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.”
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”
Blues
Don’t feel like eating, Don’t feel like writing, Can’t stop the crying, Can’t fight the sucking down, down, no name, no reason, try to think outward, of others, but it’s gripped me and I’m drowning. It will pass away eventually, always does, like storms, and hurricanes, it hits without warning, wreaks devastation and moves on,Continue reading “Blues”
Making peace with pain.
Constant physical pain in some part or all of my body has been my reality since about eight months after my son was diagnosed with Ataxia-Telangiectasia in July of 2000. It started with pain in my arms, then my legs, which led to all over body pain. I saw many doctors, had many tests, andContinue reading “Making peace with pain.”
Caring for yourself.
Lately I’ve been realizing there are quite a few ways you can kill yourself without slitting your wrists or turning the gas on in the garage. People smoke themselves to death, drink themselves to death, or don’t take care of their health. Some people overeat, or eat a lot of the wrong things, (like foodsContinue reading “Caring for yourself.”
How do you mourn?
I would love to hear feedback from anyone who happens to read my blog about the question that serves as it’s title. Some losses are immediate and final – for example the death of a parent. Other losses just go on and on, like looking at the sweet face of my middle child every dayContinue reading “How do you mourn?”
An Unexpected Life 