Have you ever met someone that drives you so crazy that your heart burst every time you look at them? That was my dad, or as I mostly referred to him... my Ton (Tone).
He was the type of guy that would randomly wear a neck brace without warning while watching TV and then look at you and wonder why you are the one confused in that moment, like the world should just know that his neck was hurting and this was today's aliment.
Ton and I have always had the same sense of humor, both sarcastic and both extremely stubborn. He was the man that would give you the strangest advice and whistle at all hours of the day. The type of man who would iron his jeans before work and wear a cut off tank around the house.
Both being extremely stubborn whenever we would argue we would both need to have the last word. Teenage arguments between the two of us could go on for hours between me closing the door and opening it again to try and make sure he was not saying something under his breath so that I could "win" the argument.
I never would have thought that one day he really would have his last word.
The moment he was diagnosed I knew that I was going to be at every appointment whether he liked it or not to make sure that I knew what was going on. The Type A planner in me needed every detail. I needed to make a plan, I needed to google. I needed to know what to expect, the whys, the how comes, the unknowns. Boy was I wrong.
Going home after his first appointment I bawled my eyes out reading that I'd be lucky to have 5 years left with Ton, and unfortunately we did not even get 2 years from that moment.
One day Ton's voice stopped working. My family knew early on my dad's wishes, how he wanted this done, what he did and did not want and we promised him that we would respect and honor the life he had left.
Ton's voice stopped. I couldn't tell you the day. I couldn't tell you the last thing he was able to truly say to me, but his voice stopping opened a door I never knew was there.
Ton's voice stopped so mine could open. My voice opened for those with ALS. My voice got louder, my understanding stronger that there are people out there sitting exactly where I was on November 28th, 2017 when we heard the doctor say, " I'm sorry, but you have ALS".