One of the (many) challenges with Ben's disease progression has been some of the symptoms he experiences that don't fit in to a specific neurological disease diagnosis. Our primary care doctor once summed it up by explaining that doctor's often make a diagnosis from a checklist of symptoms and if those symptoms deviate or don't… Continue reading Layers and Tender Mercies
Category: ALS
Bit by Bit
We do a lot of things in our lives bit by bit like riding a bike or learning to read. We take small steps forward until we have mastered the task or gained a new skill. We celebrate these accomplishments. We document them as parents for our children. Even the smallest of children learn that… Continue reading Bit by Bit
“Still, I rise”
I woke up in the middle of the night and immediately the sense of panic I live with every day set in. My chest tightened and I my mind started searching for ways to regain control over my emotions. Usually, I can focus on my own breathing but lately, I listen to Ben breathing and… Continue reading “Still, I rise”
Hope is the only thing…
Dear Friends and Family: I recently read a quote that said, “hope is the only thing stronger than fear”. I have written and re-written this blog post atleast a dozen times. There are a lot of reasons why. But the truth is that it is a hard post to write. There have been many times… Continue reading Hope is the only thing…
