Friday, August 30, 2024

Friday, August 30, 2024

Tonight's picture was taken in August of 2004. Mattie was two years old and was visiting my parents in Los Angeles that week. Mattie had a natural instinct to be cautious, which made parenting to some extent easier. It took a while for Mattie to approach water and get in a pool. But eventually Mattie got there, and swimming lessons over many summers helped. When I look at this photo, I had all sorts of hope for our future and of course for Mattie's.

Quote of the day: You will never know true happiness until you have truly loved, and you will never understand what pain really is until you have lost it. ~ Unknown

I came across this video of Mattie that I wanted to post tonight. It is one of the many videos I found while cleaning out my Google account. The context of the video was Mattie came home from kindergarten. While in class he had traced, cut out, and colored a big red heart. When I asked Mattie how he knew he wanted to create a heart, his answer was.... because you are great! That was my Mattie. To me this very short video is priceless! Check out the beauty of my Mattie! 

Last night, I fell asleep and then at 1am, I was jolted awake. Why? We had a power outage. My fan went off, my sound machine went off, and it was like someone flipped a switch in my head. I bounced out of bed to figure out what was going on. I could hear the generator start, but pretty soon thereafter, the actual power returned. Of course clocks and things were blinking and instead of going back to bed, I fixed all the electronics. Sleeping is not my friend. If I wake up, it is very hard for me to reset and get back to sleep. So at 2am, I turned on the TV and finally fell asleep. 

When I woke up this morning, I could see that all the outdoor lights were still on. Despite it being light out. That may not sound like a big deal, but to me it is, because it meant that I needed to figure out how to solve this problem. I am SICK of having to play firefighter each and every day. It gets very tiring, as I live with no one who is capable of addressing or solving anything. 

On an aside, prior to Mattie being diagnosed with cancer, I could sleep without any white noise in the background. In fact, I had NO problem sleeping at all. Once Mattie was diagnosed and we had to live in the hospital, I learned to live on very little sleep (like 2-4 hours on any given night) and I became a very light sleeper. Mostly because when living in a hospital, nurses and residents are coming in and out of your room at all hours! Some aren't kind, they would flip on the bright overhead lights in the middle of the night. I can't tell you how many of these gems I had to deal with, and I assure you at 3am, it wasn't my best hour to be playing games with me or Mattie. If you think I am assertive by day, try me at 3am!

Living in a hospital was such a nightmare, especially in a pediatric intensive care unit. Because there are NO quiet hours, the place is a buzz 24/7/. The walls were paper thin, and I could hear conversations, issues, crying, and even children dying next door to us. When I tell you it was a horrific sound, I am not kidding! It was like living in a war zone. We endured this not just for one night, but try 14 months straight. Any case, within the first month of treatment, one of my former students gave me a wonderful sound machine as a gift to address this NOISE. I never used one before, so she told me all about it and how useful it could be to drown out sound. Mary was 100% correct. With every hospital admission, Mary's sound machine came with us. We had that machine going every night! 

Once Mattie died, that sound became a necessity to us. I think there was so much turmoil in our heads that we needed the sound of rain to block out the chaos. To this day, I still use the device that Mary gave us in 2008. Remarkable no? Any one who thinks that childhood cancer can't change a parent, FORGET IT! That would be a lie. My sleep has been permanently changed, as has my ability to focus and concentrate when there is noise and other distractions around. Of course let's not talk about the psychological toll of Mattie's death!

Back to the outdoor lights! For the most part, I was able to reset all the timers and have gotten many of our lights to work again. But that feeling of panic and anxiety are ever present, because I constantly am afraid that things will happen in the house that I will not be able to manage and to fix. This panic is a direct by-product of being separated and on my own.