It's been almost seven months since you left us. I've learned to take care of a lot of things around the house, the yard, the budget, etc. Almost everything from the days when this house looked like a medical center are gone now
And here's a funny story - as I was taking the tarp off the deck furniture (Spring, finally!), what should I find but one last piece of equipment from your journey - your legs!! Or what we used to call your legs. LOL
Remember the AFO's? The ankle-foot orthotics? They were sitting on one of the deck chairs, hidden under the tarp! They gave Wendy and me a laugh over the way we teased you when you asked for them and we called out, "Get Dad his legs" or "Take Dad's legs off."
A good laugh and then a good cry. With good memories come bad ones, I'm afraid. I hated what ALS did to you, did to all of us. It took away our marriage. Our 41st anniversary passed and I didn't mention it because you were in no condition to celebrate or even care. If I had, I was afraid you might start crying, which affected your breathing in a very bad way. So any time I cried, it was alone.
We were supposed to grow old together. You worked your ass off and didn't get to retire. We were going to go to Niagara Falls. We were talking about buying a cabin in Seneca at Woodsmoke Ranch. We could have spent many a summer and fall day there relaxing, grilling, taking hikes in the national parks next door.
It took away your chance to walk Wendy down the aisle when she gets married. She really feels cheated by that loss. She gets angry when a high school co-worker talks about how she hate her dad or how she doesn't talk to her dad at all. She goes off on them and tells them how lucky they are to still have one.
It killed you, not fast, but slowly, taking away your voice, your ability to move, to swallow, to eat, to laugh, to cry, to enjoy life, to be a man, to talk to me. I especially missed the talking. You went from lowered voice to missing consonants to slurring words to hand motions. Of course, we all made jokes about some of those hand motions and got a smile out of you at times.
But the frustration levels on all our parts when we couldn't understand you were heart-wrenching. Your mind was fully functioning, but you had no outlet for your thoughts and opinions and your rage at your fate. But I did.
Remember when I brought you your coffee and just as I was setting it down next to you, it slipped and I spilled it all over the table and floor? Of course you remember, who could forget?! I exploded, screaming at the top of my voice, "F#*k me, f#*k me, f#*k me!" and burst into tears. Your mouth dropped open and you looked at Wendy, who was stone-cold speechless on the other side of the room, as if to say, "What? Who? Huh?"
And I just knelt down and calmly, cleaned up the mess, apologized to you both and left the room to get more coffee. It was like a volcano that had a short, strong burst of lava and then settled down. I guess I needed to get some emotion out, huh?
We all went through a whirlwind of emotions, sometimes together and sometimes by ourselves. After your breathing got bad, it was mostly alone or with Wendy. We couldn't bear to see you cry and then gasp for breath, having to use that suction machine.
Wow, this is such a downer of a letter, hon, but ALS is a downer of a disease, which affects every member of the family. Wendy and I saw a bereavement counselor last month. The hospice organization offers that service for up to a year after your death. We were able to get some emotions out, but I think Wendy and I, having each other, are pretty steady on our own path toward recovery.
We're having your memorial/celebration of life in nine days. I have a lot of things to get ready, and my emotions are again all over the place. But I'm hoping this will bring some closure to Wendy and me. And for mom and Dee. Your co-workers are coming, some of my extended family, neighbors and friends, my co-workers...
Always and forever,
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