Read on Twitter
Today Chris had a test that showed every muscle used for swallowing has weakened considerably. That means urgent feeding tube placement, likely w/in 2 weeks. We mostly knew this already. We were holding out hope that his tongue wasn’t affected b/c if tongue goes, speech goes. 1/6
That hope is now gone, and today I have to reckon w/ the fact that someday, maybe soon, we will hear Chris talk for the last time. Still, as I cried in the car on the way home from the hospital, he held my hand and said, "What a beautiful day. I'm good, love. I've got this." 2/6
The conversation with our kids about Daddy not needing his right hand to be our daddy, not needing to eat to be our daddy, will now have the add on of, "Daddy doesn't need his voice to be our daddy." 3/6
Our kids miss hockey, and we are all sick of not being able to travel to see our family and having to wear masks all the time. But they know that these things are inconveniences for them that will help others. 4/6
They might only remember their dad’s voice through videos, and his voice changes mean this could be Chris’ last year doing one of his favorite things - coaching our kids’ hockey teams. Would we love to be on the ice again? Of course. It is our happiest of happy places. 5/6
I will never put my family's grief & loss above what others are going through, but we can all have some perspective about what sacrifice really means, what loss really means. This pandemic isn't forever, but, for us, ALS is. 6/6 https://bit.ly/35Lhdq6
