The month of May was not just busy but stressful, overwhelming, exciting and fulfilling. There was infusions, veterans events to attend, doctor’s appointments, ALSA Advocacy Conference in DC, advocating for people with ALS, advocating for veterans with ALS, news article, the oven went out, the A/C went out, the dishwasher died and the old yellow lab had surgery. There were days we absolutely lost our shit and days we laughed. The Big He is progressing and needing more assistance in most things. The Little He is winding down in school. I am working full time out of the house and have had several large projects I am helping out with.
Some days there is little time to catch my breath. Some days I spend the last few waking moments trying to turn my brain off so I can sleep or if I pass out due to exhaustion and wake up, my mind goes to those places I don’t want it to go. It refuses to quiet down. I have been trying to figure out what I can do.
Something I can leave if the Big He calls. Something that is for me. Something that allows me to just sit and not think too hard. To sit and have the Big He just a few feet away. That something is puzzles. I am on my 4th since the first of May. I am finding they allow me to have quiet time. Just me and 1000 pieces. I usually sort them by color. There are piles that I know where they go and those that I have no idea. That’s because they don’t offer a clear clue to where they go in the puzzle. I started to think about how that is so like life. I think that Forest’s mom got it wrong, life is not like a box of chocolates but more like a puzzle. Sometimes we can see clearly how the pieces go because there is order to them like the boarder pieces or when there is distinct color pattern. We can make the pieces fit. Some more easily than others just like when things are going good. Then there are times when its crazy and chaotic like when you first dump the puzzles out. That’s what the ALS diagnosis was like but we had no clue to what the puzzle is and we still don’t. There are times when we can see past the chaos and see exactly where a piece will go. Most of the time I am sitting and staring at that pile of pieces that I have no clue what to do with. Then maybe me or someone else will walk by and see it from a different angle and be able to place a piece.
While in DC, we met with another veteran with ALS and his wife along with the wife of a marine with ALS. We also met with a veteran not familiar with ALS. All of us just talked about this new life and the struggles that we have or we will face as the disease progresses. From that conversation advocacy opportunities have presented themselves. The Big He and I were able to tell our story to a larger audience. From that opportunity we were able to connect with other veterans with ALS. These advocacy opportunities are just another piece to this puzzle that is our life now. I have no clue what the big picture to this will be but for now, I will just sit quietly and work on the puzzle.
“God’s will is like a jigsaw puzzle, sooner or later, all the pieces will fit together.”
― Danny L. Deaubé
All my love,
The Big He’s update: The Big He was exhausted by the time the DC trip was over. It took him a good 3-4 days of resting to not feel so wiped out. He did have fun and being able to share the experience with the Little He was another memory made. We were proud of our son who attended the meetings on the Hill to talk with our elected officials.
The Big He’s voice is still getting weak and understanding him is harder. He needs more help with simple tasks but that is ALS. He continues to keep a positive attitude and tackles each day head on.