Podcasters

Our story began back in 2010, but that’s a tale for another day…

In March of 2020 we heard words that shook us to the core ‘this may be ALS’. As the country went into lockdown, with uncertainty in the air, we were now facing the unthinkable. He was diagnosed with ALS (Amyotrophic Lateral Sclerosis) in May of 2020.

When we drove back from the doctor’s office, holding hands tightly and with tears in our eyes he looked at me and said, ‘whatever happens, I want to keep sharing our story’. And so we have. Our podcast then became a space for us to expand into telling our ALS story. What it looks like for a man to deal with this horrific disease, what it’s like for a couple to adapt and transform in new ways, what it means when parents need to recalibrate the ways they live and the courage they have so that their son keeps growing up with love, hope and resilience.

Like a dense fog, ALS has clouded over everything in our lives. Along with the dense fog we’ve grown to see the immense beauty that lies within us, the strength, the love and the compassion that can only be extracted under the harshest of circumstances. We’ve seen the most magnificent light peering through the fog, we look for it every day.

Each day is hard, each day brings a multitude of challenges, each day is emotionally, physically, mentally and spiritually exhausting. We choose to always come back to telling our story, to living in the moment, to noticing the good things and appreciating the blessings around us. We also laugh, fight, cry and feel the loss of hope and devastation that ALS brings with it.

We live ‘Right Here, Right Now’ a mantra and motto that we sometimes say with strength in our voice, sometimes in a low whisper as we cry and hold each other.

Thank you for supporting our journey, for seeing our pain and our joy, for choosing to live ‘Right Here, Right Now’, along with us.