Monday, August 22, 2022

Monday, August 22, 2022

Tonight's picture was taken on August 5, 2009, literally a few hours before Mattie took his CT scan and we learned his prognosis was terminal. While Mattie was in the outpatient physical therapy clinic, I was very distracted. I was trying to participate in the therapy session with Mattie and at the same time I was speaking with doctors and trying to coordinate more scanning for Mattie. It was within this therapy session that Dr. Shad called me and told me that a CT scan was definitely needed because something was seen on the ultrasound. I had been telling the doctors for a month that something wasn't right with Mattie. That day the data was captured on the scans, data that I really did not need, as I knew my son and what he was experiencing. Despite all that Mattie was coping with, look at that smile and the energy he put into his physical therapy session. 

Quote of the day: The human capacity for burden is like bamboo- far more flexible than you’d ever believe at first glance. ~ Jodi Picoult

Yesterday we went out to dinner. We go to the same place every Sunday, and Cheryl is our amazing server. While having dessert, my mom snapped this photo of us. To me I see so much in this photo..... I am exhausted and Peter is stressed. It is a familiar state for both of us, but honestly I do think we deserve a break. As I have been intensely caregiving for what feels like a lifetime. 

Some may say that Mattie's battle only lasted 14 months and that was 13 years ago. But that 14 months was like 14 years in length because the day to day, hour to hour traumas I managed stays within me. It is hard to describe but cancer knocks out not just the patient, but the entire family and of course coping with the loss of an only child will be something I will never get over. On top of dealing with all of this, I now have the care of both of my parents. 

My daily routine is tedious and as humans I do think we need two things, one: some control over our lives, and two: new experiences. The unfortunate thing about caregiving is you lose both of these things. I think new experiences help to keep us alive, motivated, energized, and in some cases are restorative. The scary part about my days is I know they WON'T get any better than they are right now. As both of my parents have issues that are progressive and of course my hope is that I will be able to manage whatever comes my way in the future. But Mattie's illness taught me that so much in life is out of my control and so MUCH is bigger than me and what I can handle.