Tuesday, August 19, 2025

Tuesday, August 19, 2025 -- Mattie died 808 weeks ago today. 

Tonight's picture was taken in August of 2007. This was a year before Mattie was diagnosed with cancer. I went to a conference in New Orleans and I brought back a Mardi Gras mask for Mattie. As you can see, he loved it. It was a special time in our lives. Mattie was healthy and about to enter kindergarten and I was working part time and involved in leadership positions at various professional associations. Childhood cancer altered the whole trajectory of our lives. Which is why Mattie Miracle's tagline is.... It's NOT just about the medicine. Once Mattie was diagnosed, I stopped teaching, working, and gave up all my professional positions. If Mattie was never diagnosed, then I am quite certain my life would have looked COMPLETELY different. That is how devastating a disease it is for both the child and the family. 

Quote of the day: Mental pain is less dramatic than physical pain, but it is more common and also more hard to bear. The frequent attempt to conceal mental pain increases the burden: it is easier to say 'My tooth is aching' than to say 'My heart is broken'. Yet if the cause is accepted and faced, the conflict will strengthen and purify the character and in time the pain will usually pass. Sometimes, however, it persists and the effect is devastating; if the cause is not faced or not recognized, it produces the dreary state of the chronic neurotic. But some by heroism overcome even chronic mental pain. They often produce brilliant work and strengthen, harden, and sharpen their characters till they become like tempered steel. ~ C.S. Lewis

So this weekend, I bought this entire wedge pillow system. The reason I chose this one, is because you can move the pieces around to accommodate your needs. Last night, I had high hopes that this set up would work for my dad. I literally got him in bed, and had him propped up perfectly (with pillows all around him). I have wedges along his sides and one under his knees. I figured he was secure, that I would find him in the same position this morning. Forget it. The wedges did not move, but my dad slipped down the bed, so only his head and neck were located where his backend used to be when I placed him in bed. This is a position I definitely do not want my dad in because of his back pain. My dad really can't lie flat, and if he does lie flat, he doesn't have the core strength to pick up his body. He can't roll, he can't sit up, and truly getting him out of bed is like moving 200 pounds of dead weight for me. No matter the instruction I give him to help straighten his body out and reposition, he can't comprehend what I am saying and he has no control over his body once he is lying flat. In addition, any movement of my dad from this flat position, causes intense screaming in pain. So before 10am, I had already went ten rounds, because I had to get him up myself and get him showered and dressed. Needless to say, I wrote to ALL THREE of my dad's physical therapists, as I want them working with him on getting out of bed from a flat position. 

Once I got my dad downstairs, then the bathroom issues occurred. It is very frustrating, especially since I just got him showered and clean. Mornings for me are super stressful and in a way how one begins the day, has a way of setting the whole tone for the day. After I got my dad situated, I then had correspondence back and forth with our home insurer. Turns out once they pay me to get the renovations done, I then have a narrow window to supply photos, documentation and a certificate of completion insuring that the work was actually done. SERIOUSLY the stress just keeps on coming. Caregiving is challenging enough, but caregiving with contractors inside the house, may send me right over the edge. 

I took a pause and went outside to the backyard. As I was walking around the garden and pool, I noticed something on the stone patio. A gooey substance that literally looked like gum all along the periphery of the pool. At first I thought it was gum, but then I connected the dots and realized the person who just caulked the pool made a total mess. I took many photos and put in a formal compliant. It is the story of my life, I do one thing, and it leads to ten more issues and problems. 

Later this afternoon, I got a package by my front door. I opened it up and it was a big bag of Nyjer seed. Birdseed that gold finches LOVE! I knew exactly who sent me this gift! The gifter knew I love the birds but that I did not want the added expense of bird seed. Which was why she surprised me with seed! I pulled out our Nyjer feeder and moved the bird feeder hooks near my roses so I can watch the birds from our windows! Not unlike when Mattie died, the only thing now that brings me any sense of peace is nature.