Just a couple weeks after Derek turned 43 he was diagnosed with ALS.
(Amyotrophic Lateral Sclerosis).
He just turned 44.
This disease has been brought out to center stage by Pete Frates and his brilliant idea of creating the Ice-Bucket Challenge. Maybe you have heard of it? If not, you should check it out.
I will be posting links to some amazing people, sites and stories under our resources tab.
For those of you who are not familiar with this disease, let me share a gentle description.
ALS is a disease of the motor neurons. It is a progressive, neurological disease that leads to muscle weakness, atrophy and aggressive changes throughout the body,
including the ability to breathe.
ALS is a terminal disease.
It is sometimes called Lou Gehrig's disease, after the famous baseball player who had the condition.
It is estimated that around 15,000 people in the United States had ALS in 2016, with around 5,000 people receiving a diagnosis annually.
Worldwide, it roughly affects between 2 and 5 people in every 100,000.
Most people live 3 to 5 years after first experiencing symptoms.
10 percent of patients will live for 10 years or longer.
There is no cure.
Derek was Diagnosed early in May of 2017 after about 6 months of speculation and testing.
Some interesting stories occurred during this time that we will share with you at some point.
Over the past year, Derek and I have thought about the endless challenges ahead for our family.
The corners rounded when we began to honestly answer one simple, loving question:
“How are you?”
This challenge unveiled layers of clarity and strength that we were not expecting.
So much so, that we have struggled with words for this entry for weeks.
Both Derek and I went to work the morning after he was diagnosed. We consciously shared 2 days of utter confusion on how this could possibly be.
Our children are so small.
Derek is so strong. We are so healthy. This can’t be.
Two days we spent in this space.
That may not sound like a long time. And who knows if it is or not. For Derek and me it was.
Never before had we lost our way so deeply.
On Day 3 we dissolved into each other in desperation to breathe fully.
Enter the plan. The insight. The honesty. The fear.
Enter in all the tools that we had gathered throughout our lives. And when we were done we could have stood atop a mountain ready to scream at the top of our lungs:
Sounds simple right? Sure, we all use this word like it’s our middle name. But do we really get it?
Do we really know its power and its weakness?
We believe that people are strong and capable of anything.
We are lovers and silent warriors. We trust and like to be trusted.
We believe that people are more similar than different, and that on some level,
we are all looking to answer the same questions.
I am an Acupuncturist. Derek and I have both practiced Yoga and we meditate daily.
We know how to chill, and let things go.
But this? This is when we need to take everything we have ever learned and create a new way.
This blog will be laced with some details of ALS and some specifics from our actual journey.
It will be about seeing life clearly and learning to honor our paths on a daily basis.
It’s about finding and maintaining balance through anything that knocks at your door.
*Every challenge that finds us needs to be faced*
Thank you for joining us on this journey.
We’ll post again soon.
and we look forward to sharing space with you again!