Tuesday, October 14, 2025

Tuesday, October 14, 2025 -- Mattie died 816 weeks ago today. 

Tonight's picture was taken in October of 2008. Mattie was home between hospital visits and that day his cousins were visiting. We took a walk around Foggy Bottom, our neighborhood in Washington, DC. The other kids were running around the flag poles, so Mattie wanted to follow along.... but instead he walked! Mattie walked because he felt differently! He knew he had a broviac catheter hanging from his chest and that he had to be more careful than a healthy child. Nonetheless, look at his face.... Mattie was smiling! Truly an incredible fellow, who also never went anywhere without a toy car in his hands (as you can see here!!!). Now when I see this photo, I look at it, and it was like my life in the city happened to a completely different person! Given all that has happened to me, I am NO longer the same person. 

Quote of the day: Sitting on the floor, I'd replay the past in my head. Funny, that's all I did, day after day after day for half a year, and I never tired of it. What I'd been through seemed so vast, with so many facets. Vast, but real, very real, which was why the experience persisted in towering before me, like a monument lit up at night. And the thing was, it was a monument to me. ~ Haruki Murakami

This morning I woke up earlier than usual because the home repair team from my HVAC company was coming to fix my drop down attic door. I booked an appointment at 8am. Since I need to balance meals and getting my parents out of the house each day, I schedule home improvement appointments early. Otherwise, we are trapped at home all day. Which I could handle, but my mother wouldn't be happy. 

Given that the furnace was installed in the attic, I can't tell you what my drop down door looked like, it was totally abused! It had dings on it, scratches, exposed nails, and dents. It was actually an eye sore! I tried cleaning the door myself, but there was no way to manage the extensive damage myself. So I complained to the HVAC install company and they arranged for their team to patch and repaint this door free of charge. In addition there is a liner that zips closed underneath the door. It helps to trap outside air and other attic debris from coming into the house. Well this liner had ripped and also detached from the attic floor. Thankfully Lee, who came today, was able to repair this liner, as he needed a special silver tape and staple gun. 

When Lee saw the attic door today, with its dents, scratches, and marks, he just shook his head! This is NOT a new occurrence for him. But unfortunately Lee did not show up at my door until noon! I can't tell you the numerous phone calls I made today to the company to complain. If you tell me an appointment time, I expect you to honor it or at the very least keep me posted. This HVAC company now sometimes uses artificial intelligence to answer the phones. AI is supposed to help and streamline the service, but in my opinion, it only makes matters worse. It screws up appointments, it reassigns the techs I request to somewhere else, and the list goes on! Now I refuse to talk to AI period. If I don't get a real person, I hang up or find a way through the system because I will not have a dialogue with a computer. 

This is the final product! Lee did a great job. The attic door looks beautiful, no dents, no dings, no scratches and it is all one color now (thankfully I had a can of the correct color paint for Lee to use in the basement). It was worth his visit!

While Lee was here, he said to me.... do you have a dog? I told him I used to and then I asked why?! He said..... there is a dog at your front door looking to come in!

I knew exactly who this was.... Sophie, who belongs to my neighbor! Sophie and Sunny used to be buddies. She is a Labrador and an absolute love! If she gets out from the backyard, it is not unusual for her to visit me. But her owners weren't home and the landscaper was beside himself! He couldn't get Sophie back behind the fence. NO PROBLEM! I took that on... why? Because I learned all the best of tricks from my best buddy, SUNNY! Sophie and I had a lovely time together and she was super easy and compliant to get back home. But I do believe dogs can read people! They know who to trust and follow! They are so smart!

This afternoon, I took my parents out to a restaurant that is near us, but that they never tried before. That could be a hit or miss, but since this restaurant is a chain that started in Boston, and I have been to one of its other locations, so I knew it was worth trying. Any case, my dad ate up a storm and my mom was happy! So whenever I can introduce them to something beyond their comfort zone, it is a success!

Monday, October 13, 2025

Monday, October 13, 2025

Tonight's picture was taken in October of 2008. Mattie was three months into his cancer treatment. That day, we went to the child life playroom. Which was very close to the pediatric intensive care unit. This playroom was a GOD sent! Because otherwise, we were trapped in the room all day. Mattie interacted with staff members in the playroom and got to work alongside other children. That day, Mattie was working on creating an underwater scene. But within this scene, Mattie decided to build a bridge out of model magic so that his cars had a way to be incorporated into his play scheme! Any form of locomotion caught Mattie's attention even as a baby! Before Mattie could stand, walk, or talk..... he could spend hours looking out our bedroom window and observe cars, trucks, and planes flying by! 

Quote of the day: Of all that I have possessed in my life, my memories are the only things remaining to me. Indeed, I believe that memories are the only real treasure any human can hope to hold always. ~ Gary Jennings

It was another winner of a day on the farm. I felt like I was playing to beat the clock this morning, as I had to get my dad up, showered, dressed, and downstairs before the HVAC person arrived. Andrew came at 9:30am and did not leave until 1:45pm. It felt like an endless visit. When the new furnace was installed a week ago, the company installed a thermostat that was incompatible with my entire system. This is when I want to scream with technology! As there is a control panel inside and outside the house and they have to be able to talk to each other for the air conditioning to work. 

Andrew spent hours in the attic today and when the wiring and new thermostat were finally intact, we had to find a way to register this new system and to enable me to have control over the upstairs thermostat on my phone! I have learned that I do not let any tech leave my house unless I know I have control over the system. Why? Well for over one year, I did not have control over my thermostats! Which meant I got NO heat upstairs and downstairs was no better. In order to manage this problem, I had to have my HVAC company come over and totally reinstall the systems again, giving me access to my own heating and cooling apps. Today was just as confusing and we had to call the thermostat help line to work through the registration problem!

While managing Andrew, I was also on the phone with my health insurer. What should have been a simple call, turned out to be 40 minutes. I was juggling Shirley and Andrew simultaneously. Meanwhile as I was dealing with this, I was managing Foundation admin work, the laundry, my parents, and other problems. 

By 2pm, I was frazzled. It is hard to believe that two years ago, I really knew very little about how anything in the house worked. Now, I may not know how to repair something per se, but I can more intelligently diagnose the problem and get the help that we need. I remember when I used to go to therapy, the therapist would give me a lot of atta' girls! NOT HELPFUL! I didn't need the praise then and I don't need it NOW. What I do want, NO ONE CAN GIVE ME.... I just want my life back... to not face every day being the sole adult on duty and to be able to look forward to a future I had always imagined. 

Sunday, October 12, 2025

Sunday, October 12, 2025

Tonight's picture was taken in October of 2008. This was Mattie's third month in his cancer treatment journey. By that time, all his psychosocial providers knew about his love for cardboard boxes and creating! His art therapists saved this big cardboard box for Mattie and over the entire month of October he worked on making a haunted house. Literally this box was decorated inside and out and had ghosts and witches and the inside was spooky! I am so grateful Mattie's hospital had an extensive art therapy program and I will never forget all the amazing women who helped Mattie have opportunities to be a child, NOT a child with cancer. 

Quote of the day: Memory is the sense of loss, and loss pulls us after it. ~ Marilynne Robinson

This morning, I was listening to the radio while getting myself dressed to start the day. The radio hosts were interviewing a singer by the name of Priscilla Block. Literally it was what she was saying that made me pause. She mentioned that she wanted to write a song (Things you didn't see) that actually depicted her, her life, and her journey. I do not know this singer, but apparently she is known as a party girl. Yet like so many us, if you don't scratch the surface, you are never going to know the depths of our foundational core. 

In the song she describes real struggles with her parents losing the family home, break ins to places she was living, dumpster diving to make a living, body image issues and the list goes on. Now clearly, if you did not know this about her, you would only see her successes. If you haven't heard the song, click on the image. 

Getting to know all facets of the people in our lives is crucial. It gives us better insights and perspectives into how they think and feel about things as well as how they make certain decisions for themselves. I have always been fascinated by people and learning about their lives and experiences. Yet I know not everyone shares this interest. 

Not everyone knows my story. Not everyone knows I lost a child to cancer, recently got divorced after a 35 year relationship, or that I am the full time caregiver to both of my parents. All of these experiences define me and how I live my life. I see the world through a lens of trauma and grief and frankly this can be lonely. It influences my ability to trust others, to want to spend time socializing, and having an inability to envision any sort of future. To me life is one big chore after the other, filled with bills, managing crises, and profound sadness. 

I think what Priscilla Block's song reminds us is that there are things we DO NOT see/know in those around us. If we pause and remind ourselves of this, we may actually become more patient, compassionate, and understanding for those around us.