My lovely cousin married a wonderful man many years ago. I first met Neil when I was only eighteen and visiting the newlyweds. They’d moved all the way from Ontario Canada to a large, beautiful island on the West Coast. We had a fun-filled family time and I’ll never forget his happy grin and warm welcome.
Years past and eventually, I too moved to the same island off the coast. We brought our children and at our “Welcome to the Island” dinner, Neil quipped that I didn’t need to take photos, ( I was snapping them like a crazed tourist) because “you live here now.” I wasn’t just visiting like the previous time. Neil was slyly funny and you had to pay attention to get his humour.
Fast forward to our daughter’s wedding. All the cousins attended, along with their mother, (my favourite Auntie). Neil’s PLS (Primary Lateral Sclerosis) had been slowly changing his speech; he was less steady when he walked, but his humour still shone and we had a wonderful family time. Shortly after, Neil learned that his condition had changed to ALS (Amyotrophic Lateral Sclerosis) more commonly known as Lou Gehrig’s Disease.
It’s a devastating diagnosis and for the record, his is the second death from ALS of a person I know. I believe it’s far more common than we think. Maybe it isn’t one of the Big Three: Cancer, Heart or Diabetes…but it’s common enough that I’m willing to bet most people know someone or a relative of someone with ALS.
Neil’s daughter, one of the many I call “My Young Cousins” wrote this book to help her children and others understand what was happening to their Gramps. The picture that made me tear up was the one that shows Neil’s guitar on its stand, cobwebs clinging like reminders of what had once been.
Profits from this book are going to The ALS Society of BC.
Maybe you have someone with children who need help to understand this dreadful thief, this disease that steals loved ones away. I hope that this book will help.
And Neil, thanks for the memories, the love, the laughter, and the music.
About the Author: Deana is a wife, mother of two beautiful girls, and teacher to a room full of active kindergarten students. She has always enjoyed reading and writing, and wanted to find a way to help her children – and others – who are living with the challenges of ALS, find a way to make sense of what’s going on. The creation of this book has been a long journey, but good things are worth waiting for, right Dad?
About the Illustrator: Shannon Budau is an artist by hobby. She met Deana at their church three years ago. Shannon teaches piano professionally and both of Deana’s girls are students of hers. So grateful for his opportunity, Shannon wishes the very best for Deana and her family. She knows this book will do a wonderful job of teaching kids about ALS.