Monday, August 4, 2025

Monday, August 4, 2025

Tonight's picture was taken in August of 2009. By that point in time we knew that Mattie was dying. As you can see, he was on oxygen all the time. Sitting next to Mattie, was his cancer buddy and mentor, Jocelyn. Though Mattie and Jocelyn were very different ages, they both had osteosarcoma. Mattie met Jocelyn early on in his treatment process, and Jocelyn helped to normalize the hard reality of surgery. With bone cancer the only way to remove a bone tumor, is to remove the entire bone. If that happens, then a prosthetic bone is put in its place, or if the tumor is too extensive, then an amputation is needed (which is what Jocelyn had). Now that I reflect on this photo, I have to pause and say how brave Jocelyn was to sit with us in that moment in time. After all she was fighting the same disease and it had to be crushing to see her 7 year old buddy dying. Jocelyn was an amazing friend to Mattie and a great supporter of Mattie Miracle up until the day she died. It is a hard reality that both of these young souls were taken too soon.  

Quote of the day: Betrayal is the only truth that sticks. ~ Arthur Miller

When I tell you there is NEVER a dull moment on the farm, I am NOT KIDDING. Last evening, I was outside weeding. While walking about, I noticed a red light reflecting off of our fence. I was confused where this light was coming from, so I walked toward it. It was on our generator. In 2021, after moving in, we installed a generator, because we were concerned with my parents living with us, we could not be without access to power. I service this generator religiously every October. So I was stunned to see the red light! Mind you I had NO IDEA what it meant, but I knew it wasn't good. Then to add insult to injury, I had a whole string of lights along the driveway NOT WORKING again! Literally I was ready to flip out last night. I came inside and at 9pm, I text messaged our electrician. YES I have the personal cell numbers of my electrician, plumber and HVAC person. They all work for a big company, but they have worked with us extensively, since 2021. So when I text message them, they know I have a problem. In fact, do you know that my plumber text messaged me on my birthday! These are amazing men, who are devoted to their families and are devastated with what has happened to me.

At 7:30am, Bob text messaged me and told me he was coming over at noon to evaluate the generator and lights! If that was my only issue, I perhaps could have kept it together today, but OF COURSE NOT! While vacuuming the kitchen, I was stunned to see a puddle of water on the dining room floor. Seriously at first I thought maybe I spilled something by accident, until I looked up! The door jam was raining and I quickly deduced that this was coming from my mom's shower! 

There is a whole seam in the dining room that is showing water. Needless to say, at 8:30am, I text messaged Cody, my plumber. I showed him photos and within minutes, he got me on his schedule for Tuesday morning to come over and figure this out! I also can't access any of the water sensors in our house, as I was not the one who created the account originally. So hopefully Cody will be able to give me back control of my own water sensors. Truly this water issue has sent me over the deep end today! Why? Because any issue means money, money of which I did not budget for in August. Needless to say, I have told my mom that she can not use the bathroom, and I have relocated her to another bathroom. 

While waiting for Bob today, I decided, I HAVE GOT TO HANG THESE PAINTINGS! I figured I better do it before I get derailed with another problem or issue. I measured, and measured, and measured again. It is hard to do this solo, but I did it! The painting on the right features Sunny! He has been immortalized! 

I wrote to Kim, the artist, and showed her the art framed and on the walls. She was thrilled to see this and I am proud of myself that I got this project done and that I had this vision to begin with! Of course my original vision was for four paintings, but I am grateful to have at least two out of the four. 

When my dad saw the paintings this afternoon, you want to know what he said? He said whose house is in the photographs?! He did not recognize the house and has no recollection of Sunny!

Sunday, August 3, 2025

Sunday, August 3, 2025

Tonight's picture was taken in August of 2008. It was Mattie's first week in the hospital, to start chemotherapy. We were all very edgy, nervous, scared, and truly frightened over what this journey was going to look like. The adjustment of living in one's home, to living in a two by four of a hospital room was tremendous. The room they put us in initially had NO shower. If you know anything about me, then you know my day can't start without a shower. I literally pitched a fit, and the next day they moved us to another room in the unit. Don't get excited however, because all the pediatric rooms SHARED showers with the room next door to them. In the age of viruses and germs, it is remarkable that this arrangement still exists. But having lived in the hospital for 14 months, it was amazing what we got used to. This photo was taken right outside Mattie's hospital room. Mattie's child life specialist set up a painting station and we worked hard at trying to change the tone and the mood of the day. That week was the only time Mattie wore a hospital gown. After that point, we followed Mattie's lead. His clothing choice in the hospital was always pajamas. So we developed quite a collection for him!

Quote of the day: She never seemed shattered; to me, she was a breathtaking mosaic of the battles she’s won. ~ Matt Baker

I am still at it with my family room wall. I rearranged the template configurations this morning and hopefully tomorrow I will get to measuring out the hooks for the first painting so I can get it hanging on the wall. I am trying to take my time with this, because I want to get it correct. I truly can't believe it is August, and that September is just around the corner. This September, will mark two years that I have lived life without my husband. Have I gotten used to living a single life? NO! Do I like it? Absolutely NOT! I certainly can acknowledge what I have single handedly accomplished since he left me, but even with that, I can't believe this is my life. I have had to learn all sorts of things. Literally it took me over a year to figure out that I had NO control over the thermostats in our home. Thankfully my HVAC company came over and helped to reprogram the system. But now I am having similar issues with our water sensors. Sensors which tell me if there is a flood in the house! I have just learned that these sensors haven't been working since my husband left. So I am trying to get down to the bottom of this problem too! When I tell you I am tired and exhausted, that is putting it mildly. 

I took my parents out for brunch, the place we visit every Sunday. We haven't been to this restaurant for three weeks, since my dad's hospitalization. Today, Cheryl (our server) celebrated my birthday! I had a lovely meal and Cheryl took a photo of all three of us. When I saw the photo, I wanted to delete it. It is a visual that shows just how all this heartache has impacted me physically. To me, I looked worn out and sickly. 

They were featuring a fresh tomato salad today! So we all started with tomatoes. My husband used to grow tomatoes and I can't tell you how many wonderful tomatoes were produced on our property. Now I refuse to grow a solitary vegetable. 

 

I ordered trout, green beans, and fresh corn with tomatoes! 

c

I try not to eat a lot of ice cream! However, I have to admit, it is one of my favorite things! So this was my treat for today.