A friend recently shared a quote from Winnie the Pooh that said, "How lucky am I to have something that makes saying goodbye so hard?" And I am the luckiest girl in the whole world! It breaks my heart to share with you that Ben's condition is changing, and he is starting to transition to… Continue reading How Lucky Am I…
Category: ALS
The Gall…
The definition of gall is “bold and impudent behavior.” And that’s exactly what the last few days have felt like - atleast where Ben’s gall bladder is concerned. A little over a week ago, Ben started experiencing some pretty uncomfortable digestive symptoms which progressed to intense pain on Wednesday night. We made a trip to… Continue reading The Gall…
Layers and Tender Mercies
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
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…
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