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
Needs (Updated 12/1/2019)
First, let us start off by shouting THANK YOU from the rooftops! We cannot express enough how grateful we are for your support, love, prayers, donations, food, and goodies. We have an incredible group of friends and family and a whole community of strangers who have rallied behind us. Second, we were asked to put… Continue reading Needs (Updated 12/1/2019)
“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…
