I think it happened on a saturday early in the morning. I didn't know it at the time, but for the week prior he had really gone downhill. Months before, Michael and I sat on the L shaped couch with mom and dad when mom informed us that daddy was sick and he was going to die, but not for a very long time. They explained to us what his disease was and what was going to happen to his body. He was not going to be able to move anymore. No tears were shed, it seemed like a fairly simple conversation in my six year old brain, even though it must have been gut renching for everyone else. It did not phase me. When he could not hug me anymore I remember climbing up into his upsy-downsy bed and confidently declaring the cure for the ALS. "Dad, if your muscles are getting weak, then all you have to do is exercise to make them strong again." It was so simple why hadn't these scientists thought of it?
Fast forward to "that" saturday. I was slouching on the edge of the L couch watching "Troop Beverly Hills," one of my most favorite movies. It was early in the morning, I think I was still in my p-jays, there were many people coming through the door, but that was quite the norm during those days. We were constantly surrounded by family. Our family room with the L couch was one huge open space with vaulted ceilings expanding to the upstairs, a fireplace on one side near the front door, and the dining room on the other. A dining room with no table because it was now his bedroom and had been for some time, ever since he could not make it up the stairs. It was not much of a bedroom just a hoyer lift and his queen sized upsy-downsy bed elevated on top of cinderblocks so his lift could fit under his bed. This is the same bed I live in today. The walls were painted peach which left the dining room aglow when the afternoon sun hit the window and saturated the room. He had a perfect view of the entire bottom floor and of me only a few yards away. He had not been talking loudly because breathing had become difficult; I knew that because he started wearing oxygen tubes (this was long before bi-pap machines). So what came next was shocking, because his weak quiet voice started to yell. "Mommy I love you!" "I see the light!" "Oh God please take me!" Over and over until there was stillness. I had to have moved off of the L couch because my viewpoint had changed to where I could see the entire bed and I am not sure when I realized what was actually happening. My daddy was dying, and his mom was there to welcome him.
I was ushered upstairs with my brother to watch tv on a small black and white, set with tin foil on its rabbit ears, because mom did not want us to have the memory of the corenor zipping up dad and taking his body away. I did not cry until the end of his memorial service, sitting at the front of church, starring at him laying in a rich oak casket lined in white linens. I started crying hysterically for him, screaming, "I want my daddy, I want my daddy!" I was picked up by somebody who was desperately trying to soothe me, but I did not care because my dad was gone. This was my first memory of grief. People were paying their respects to my mother one by one as I was being passed around one by one, still screaming having a meltdown. The only person who I remember holding me out of the entire bunch was my uncle Johnny. He died from the ALS twelve years later after he thought he had escaped it. My dad's casket was open and I wanted to crawl in, hug his cold body dressed in a heather gray suit with a paisley tie. I want to be creamated, it's cheaper and people don't have to visit a grave. My dad was not around to teach me how to drive, pick a good boyfriend, or help me with my studies. But for the things he couldn't teach in life, through example, he taught me more with his death. Write letters to your loved ones for after you pass, donate your brain and spinal cord to science because ALS research is important, always say, "I love you," because your family is everything, and throw one huge party of the century after your funeral!
"He's paralyzed man, he's paralyzed man,
He can't do, what others can.
He's paralyzed man, he's paralyzed man,
Can't move his feet, can't move his hands!"
-sung by Jeffrey Mishork and his kids
*Help end ALS and Text "YFALS" to 20222 to make a $5.00 Donation to the Young Faces of ALS.