Thursday, August 7, 2025

Thursday, August 7, 2025

Tonight's picture was taken in August of 2009. By that point, we knew that Mattie's cancer had metastasized and that he was going to die. One of the things Mattie always wanted, even prior to getting cancer was a big ride on vehicle. Prior to getting cancer, this request was always met with a NO. It was an expensive toy, that I figured would be exciting for about a week, and then Mattie would move on. However, when your child has cancer and his wish is to drive a ride on vehicle, guess what? YOU GET THE RIDE ON VEHICLE. That day we bought the car and assembled it on our deck. Mattie named it "Speedy Red." I will never forget how Mattie took to driving like a duck to water. He had a natural understanding for the gas and brake pedals and to this day, I still have the steering wheel from Speedy Red. As Mattie got weaker and weaker, we had to lift him into Speedy Red, while hooked up to a pain pump and a portal oxygen machine. As long as Mattie was able, we made his Speedy Red wish possible. 

Quote of the day: Every day she felt unnerved by how reasonable her love and her fury, which had become one, seemed. She spent most days feeling stunned, aware only of a sort of rage swirling loose inside her like a rainstorm gathering speed, and it frightened her to think of what might happen if she were to let it implode. ~ Huma Qureshi (book: Things We Do Not Tell The People We Love)

This morning, I left my parents at the breakfast table, while I went upstairs to the bathroom, so I could leave the house and take my dad to his foot doctor appointment. When I came back downstairs, I found my dad sitting in the chair I left him in, but while seated he was moaning and sliding the chair along the floor. He was trying to reach his walker to go to the bathroom. As I observed what was going on, I went over to help him immediately and then started screaming! In fact it was a day filled with screaming. I can tolerate a lot, but I can no longer tolerate disrespect, cluelessness, and selfishness. To this I put my foot down. I asked my mom whether she was observing what was happening right in front of her. Of course she didn't, as she had her nose in her phone and wasn't paying a bit of attention to my dad. 

Before leaving the house, I told my mom that the water removal people were coming back this morning. Since I wasn't going to be home, I told my mom that she had to oversee what was going on. When I got to the foot doctor appointment, I noticed all the staff in the office had completely changed. The doctor's assistant escorted us to an exam room and got my dad set up for his appointment. When I asked her what happened to the previous assistant, she told me that she was accepted to medical school. Literally without a filter on my mouth, I said.... this was the last thing I expected to hear. This previous assistant was a clueless wonder. She had a dopey expression on her face, never made eye contact, didn't get to know us (and we are there every 9 weeks) and the list goes on. I can't imagine her in the field of medicine, much less becoming a doctor. 

When my dad's foot doctor came in, she proceeded to tell me about the assistant that got into medical school. I told her I don't view this as a good career fit. My dad's foot doctor did not like my attitude, as she proceeded to tell me that this former assistant was very bright and a hard worker! My response was, I have no doubt that is true! But that doesn't mean she will be a good doctor. The foot doctor said that she wrote a glowing recommendation for this former assistant, and again without a filter, I said, I am sorry! Which translates into, that was a mistake. The foot doctor then snapped at me and asked me what my credentials are, at which point I told her I have a PhD, I am a licensed mental health provider, I run a childhood cancer non-profit, and have extensive experience advocating for patients in the healthcare system. I then told her ALL doctors for the most part are bright, but what distinguishes any doctor from an outstanding doctor, is that an outstanding doctor is capable of listening, getting to know their patients (beyond the numbers/data), to be compassionate and to include patients in their health care decisions. Truthfully this foot doctor didn't know how to handle me! Her reaction to what I was saying is that her former assistant will learn these psychosocial skills in her residency! At which point I said, ABSOLUTELY NOT! Residencies do not award physicians for their compassion and humanistic qualities, in fact, I would say residencies train doctors to dehumanize their patients. I can't tell you how many residents I endured during Mattie's treatment and I wouldn't be as bold as I was today, if I did not have countless examples to corroborate my opinion. Well I thought she was going to lose it, and we agreed at that point not to talk to each other. 

Keep in mind before having this discussion about her former assistant, the exam started by learning that my dad was in the hospital for most of July. Do you think she asked me how he was doing? Is he better? NOTHING. Instead, after hearing he was in the hospital, she asked how we have spent our summer? She let us know that her summer was busy with family weddings and other events and she was tired of having all these events every weekend in the summer. Truthfully, can you imagine how I felt hearing this??? So I had this clueless dialogue followed by the one about her former assistant. 

When I got home from the appointment, I walked into the house and immediately panicked. I heard a high piercing sound that almost seemed like an alarm. I literally went room to room trying to figure out what was going on then noticed this big fan outside the bedroom with the flooded bathroom. I located my mom in the house and asked her what was going on!? Turns out she had NO IDEA. While the water removal people were working in the house, she was doing her walking routine and didn't oversee the process or ask questions. This led me to have a full blown melt down. 

What you can't tell from the photos is the intense sound in the house! The fans are incredibly loud! Deafening almost, I can practically not hear myself think. It is like living in a wind tunnel! Then of course, on the half hour, my dad asks me why we have the fans and can I turn them off! If I could turn them off, I would, but they must remain on until Saturday night! 

I had a contractor over today to discuss the repairs, but this will mean more legwork on my behalf, as I will have to pick out tile, a vanity, and other things myself! In my free time, time which I never get. 

This afternoon, I went outside for a minute or two and my SUNNY hibiscus was all abloom!

My tribute to my beautiful dog, Sunny! He brought sunshine, love, and loyalty into my life. A boy never to be forgotten! 

Wednesday, August 6, 2025

Wednesday, August 6, 2025

Tonight's picture was taken on August 6, 2009, the day after I learned that Mattie's cancer diagnosis was terminal. The next day, we met with Mattie's oncologist to talk about next steps. Actually she handled that impossible conversation quite well, as she said, there was always HOPE! Yes she understood we weren't fighting for a cure anymore, but she said the goal was to focus on dignity and pain management. What she said resonated with me, because it gave me a mission. I needed something because the notion of Mattie dying was too much to handle. This photo said it all! We left Mattie in the outpatient clinic with his art therapists and one of his nurses. When we returned from talking to his doctor, look at how Mattie was looking at me and trying to read the situation! Mattie knew he was dying before anyone else, and frankly it was amazing and disheartening that a 7 year old understood this difficult concept.

Quote of the day: It’s so hard to forget pain, but it’s even harder to remember sweetness. ~ Chuck Palahniuk

Last night I decided to call my homeowner insurer at 10pm. Remember, I am the girl who never paid a bill, managed finances, or interfaced with contractors and insurers. I always relied on my husband! I wanted to make the call on the same day that the water removal company came to assess the damage. I also knew that I had to take my parents to a doctor's appointment this morning, and therefore I wouldn't get the time to do this important task. I spoke to a lovely agent last night, her name was Tanya. Her first question to me was..... how are you, are you okay? Truly this woman gets a gold star! She couldn't have been kinder. I was on the phone with her for about 40 minutes, and I detailed the issue, how it happened, and the next steps in the process. She provided me a claim number and that was exactly what I needed to provide the water removal company. Truthfully I can't say enough about Semper Dry. If you have a water issue, they should be your first call. Every person I have interfaced with has been amazing. 

I took my parents for their rehab doctor appointment today. This is the doctor who accepted my dad into his acute rehab program in the hospital during July. The doctor was beyond impressed with my dad's recovery. The doctor and the nurse credit me for how well he looks, and they understand that I push my dad to exercise and walk daily! It is the only way to keep him somewhat independent. After the appointment, I took them for frozen yogurt. While having yogurt, I got a call from Semper Dry, they were on their way to our home.  

The Semper Dry team gets an A. They could tell that I am a Type A person, and they assured me they were going to protect the staircase, furnishings, and so forth. They also told me they vacuum while doing the work to prevent dust build up! Music to my ears. One of the fellows, is currently experiencing a water issue in his own home, so he has a personal understanding for how devastating this is! Needless to say, they made what could be a difficult process, more manageable. Nonetheless, it is still overwhelming and my dad asks on the half hour what is going on!

When they removed the bathroom tile, I can't tell you the smell! It was foul! Mold was beginning to grow and it impacted the sink and vanity! Amazing how fast mold can grow, from water damage!

Right now this office door is closed. A big fan is blowing in it and in the bathroom! Thankfully I can shut the door and not see it. I am not as lucky downstairs. 

This is what my first floor looks like. They have taped up the dining room to prevent dust from blowing around. I await to hear how the ceiling looks. They are cutting it down as I am typing. 

I am told that the average drying period is three days. They will check on it daily, and hopefully I will then figured out who will do the reconstruction. My neighbor wrote to me today because she could see the countless trucks in front of my house. I explained to her what is going on and her reaction was DEAR GOD... how much more can you manage?  I don't know the answer to that question, but what I do know is today I am grateful for Jake and Savari, my Semper Dry angels. 

Tuesday, August 5, 2025

Tuesday, August 5, 2025 -- Mattie died 806 weeks ago today.

Tonight's picture was taken on August 5, 2009. How do I know? Because it is a day I will NEVER forget. On that day, I learned that Mattie's cancer metastasized throughout his body and that he was going to die. Mind you Mattie's doctor did not believe that was as sick as I was reporting. I get it, as Mattie completed chemotherapy only six weeks earlier! However, Mattie wasn't eating, drinking, and was complaining of pain. I was told that Mattie was manipulating me and was developing an eating disorder and an addiction to pain medication! Maybe so if he was an adult but NOT a seven year old! I wasn't buying it! I finally demanded that Mattie get scanned. That day, my worst fears were confirmed. During difficult moments, Mattie and I headed outside to the hospital rose garden. Near the garden was this beautiful elephant sculpture with pretty tiles all over it. In fact, one of Mattie's nurses created a Curious George (named after Mattie's curious left leg -- the only leg not operated on) tile in his honor. We snapped a photo of Mattie by the elephant and then went to the rose garden. It was in that garden that Mattie crawled out of his wheelchair and wanted to sit in my lap and hear the story about the day he was born. It was a story Mattie never got tired of hearing and I never got tired retelling it!  

Quote of the day: But pain's like water. It finds a way to push through any seal. There's no way to stop it. Sometimes you have to let yourself sink inside of it before you can learn how to swim to the surface. ~ Katie Kacvinsky

Today I reached an all new low.  It is almost 10pm, and I have finally stopped moving for today. In fact, while typing, I was practically moved to tears. Remember I am not a crier. I feel that overwhelmed, disgusted, and upset.

This morning, Cody came over at 10am. Cody is my plumber. He came to assess the upstairs bathroom that leaked into my dining room. Cody confirmed my fears. There is NOTHING wrong with the plumbing, the issue was my mom has flooded the bathroom while showering. I have told her about my concern before because when I check her bathroom daily, many times I have found water all over her bathroom rug, but never a flood on the floor leading to water pouring into my dining room. 

Cody said it was imperative that I get a water expert into the house to assess the problem. He connected me with a company he works extensively with and in less than an hour, I was talking to that company and had an appointment with them this afternoon. Meanwhile, there were many other issues in the house that Cody had to help me with, as we are going through everything to prevent any other floods or leaks. He was literally with me from 10am to 4pm. Get the picture on the amount of work he did today? 

Despite the pressure I felt over plumbing issues, my mom likes going out at noon or 1pm each day, so I had to juggle her needs. I told Cody, he understood, and I left him in my house for hours alone. That is how much I trust Cody! Cody is beyond disgusted with my husband. He can't get over that someone would leave me, much less leave me managing the impossible (a home, caregiving, and everything it entails). Cody says there is NO excuse for this whatsoever. 

While out with my mom, I did not sit still long, because my car was also being serviced, so I was answering those questions, paying for it, and then the company which mediates water damage called me back and said that a project manager was coming to my house in ten minutes. I literally left my mom at Starbuck's and ran home. So let's do the math, this afternoon, I was single handedly juggling the car service, the plumber, and water remediation. 

When I met with Oscar, the project manager, he used his gizmo which reads water moisture in walls and floors. Turns out I have 99% water in the bathroom floor, bathroom wall, and dining room ceiling. What does that mean? It means that all of this needs to be ripped up, professionally cleaned and then big fans need to be set up to dry each of these locations. It is extensive and then I need to hire a contractor to dry wall, tile, and repaint. Oscar believes that my home owners insurance policy will cover this, but I did not have time today to open a claim because after picking up my dad at his memory care center, I had a Foundation board meeting. After that 90 minute meeting, I had to cook and serve dinner, and then help my mom move all her things from the damaged bathroom, to the bathroom in my husband's office. As an aside, I still refer to the office and bathroom as my husband's. I never removed his towels! Why on earth not? I think a part of me still can't accept that he left! Cody had me laughing today, when I told him that my mom was moving into my husband's bathroom, his immediate response was........... OH NO! YOU HAVE TO FIND ANOTHER NAME FOR THAT SPACE! ANYTHING ELSE WILL DO!

I am on overload and as my mother in law said to me today, I agree with..... what I face each day is cruel and unfair. I couldn't have said it better. I feel like I have reached an all new low tonight, as days aren't getting better, just worse. 

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. 

Saturday, August 2, 2025

Saturday, August 2, 2025

Tonight's picture was taken on August 4, 2009. This was a day I will NEVER forget. Why? Because literally minutes before I snapped this photo, I learned that Mattie's cancer metastasized throughout his body, six weeks off of chemotherapy. Mattie was going to die. Literally before I received this horrific phone call, we were hopeful that Mattie was off treatment and we were going to focus on physical rehabilitation. You can see the look of happiness in Mattie's face. How I kept it emotionally together in front of Mattie, I still have NO IDEA. Strike that... I do know how I did it! I did it because first and foremost I was Mattie's mom and as his mom, his needs and wellbeing always came first. 

Quote of the day: True love is many things and can survive the strongest and most painful of times. When love comes out the other side of a fire, it may be scarred forever, but this bruised love is somehow only greater for having survived the pain. ~ John Carter Cash

For the past two days, I have been playing around with paper templates in my family room, as I am trying to hang up two pieces of art. I described this project in yesterday's blog, but the process continues today! Thankfully I have my lifetime friend, Karen, and my dear friend, Cheryl and her husband Steve working with me remotely on this project. This morning Steve wrote me and gave me a stellar tutorial on how to hang up art using J hooks. Not only were his descriptions clear and understandable, but he provided photos! I am a visual learner, so pictures are worth 1,000 words with me. Having this support, truly helps as I want to get this project right. It has taken me TWO YEARS to get to this point, so I don't want to screw it up. 

Round ONE

So initially this was the layout I placed on the wall. I aligned the paper templates up at the top! Yes these two pieces of art are different sizes. With the landscape piece being larger. I purposefully chose different sizes because there were supposed to be four pieces of art on this wall instead of two. With four together, it would have created a wonderful square of art. 

In 2023, we commissioned a local artist to do impressionist paintings of our home. This was something we all agreed upon, and trust me prior to this there was no agreement over what went in this space. We paid for two of the pieces of art to be created, with the notion that once these pieces were done, we would pay for the next two. It took me a while to reconnect with the local artist working on this project, because when my husband left, I wanted to ditch the entire project altogether. However, since two paintings were already paid for, I decided financially it made more sense to claim these pieces. Truly this has been a very emotional project for me, because the vision for this wall was created when I thought I was happily married.   

Round TWO

When Karen saw the above photo, her mathematical eye immediately said... no! The templates need to align on the bottom, not the top. So I pulled out my ladder, which is like 15 feet tall, and rearranged the templates. 

Round THREE

Karen then mentioned switching the templates around to see if the vertical template looked better on the left. At the end of the day, I think my mom, me, and Karen agree that Round TWO, with the vertical template on the right works the best. 

The family room wall is extremely tall, and what I love about having the vertical template on the right, is it immediately draws the eyes up into the room. 

This afternoon, I took my parents out to our local diner. We haven't been there for three weeks. Everyone was thrilled to see us! They all said my dad looked great, like he had never been in the hospital. Yes I would say physically he is making a come back, but cognitively each admission, provides a another massive decline. This decline is invisible to most people, but it is very real and very challenging to me. 

I went upstairs to my room today for about 15 minutes. I sat on my bed to answer emails and messages and of course if I am on my bed, my side kick is never far behind!

Friday, August 1, 2025

Friday, August 1, 2025

Tonight's picture was taken in July of 2009. This was a typical scene at the art therapy table if Mattie was around. He was like a moth to a flame! Mattie was surrounded by his friends Jocelyn (who also died of osteosarcoma) and Maya, along with Mattie's social worker (Denise) and the Magic Man (Bob). Bob devoted the year Mattie was hospitalized to teaching him the art of magic, and Mattie LOVED it. Magic made Mattie feel special and good about himself. That day, Mattie was performing a mini magic show at the art table! As Mattie's cancer treatment wore on, his desire to be social decreased dramatically. Yet magic enabled Mattie to engage with others and in those moments, he wasn't a kid with cancer, he was simply a KID!

Quote of the day: Love is knowing that your feet carry you to a painful place, and still go anyway. ~ Mitta Xinindlu

When we moved into our house in 2021, NONE of us could agree on what to hang on our large family room wall. I ranged from wanting to capture Mattie Miracle moments on the wall, to displaying some of the beautiful photography my husband captured over the years on our family travels together. My ideas were shot down, so I had to come up with plan B. 

That is when I proposed that we commission a local impressionist artist to capture landscape scenes of our gardens and the house's exterior. Everyone loved that idea. I had the wonderful opportunity to meet Kim Richards at the Vale Schoolhouse Annual Art Show in 2023. I actually have four of her smaller paintings in our home. Ironically these two 
paintings, my husband purchased for me to celebrate my birthday and our wedding anniversary in 2023. I saw them at the Vale Schoolhouse art show. They weren't featured together, I literally got them off the walls and put them together. To me they spoke to one another when they were placed side by side. When I look at these paintings now in my house, they remind me ALWAYS that my marriage and love were REAL! It had to be, otherwise, why stay together for 37 years?

Once my husband left in September of 2023, I paused this entire art project. My heart wasn't in it! Yet a year later, I wrote to Kim. Since we paid for half of the project already, I decided to move forward with two of the four paintings we originally commissioned. I am so glad I did! 

While my dad was in the hospital for two weeks, I finally took Kim's prints to the framer (if you are looking for great craftsmanship in Virginia... go to Frame Masters, and ask for Richard Best.... amazing professional and he knows his frames) and I got them back last week! Keep in mind it has taken me two years to manage this project. At first I was going to forget about all of it, but since I paid for half already and the paintings are stunning, I decided to make my vision a reality and find a way to get them up on the wall. Any case, while my dad was at his memory care center today, I spent hours trying to figure out where to hang these large paintings. I created orange paper templates of the paintings. Then spent the next several hours measuring the space, measuring again, dragging in ladders into the house, and getting my level out. I am doing this all alone. There is on one in the house holding the tape measure, no one giving me a perspective from the ground and the list goes on! However, I am not a novice to picture hanging on a wall. I have done it for all of my parent's moves in California and naturally always worked with my husband on hanging art in our own home. So I picked up many of his skills over the years, as truly I think one of the facts about myself is I always welcome learning new things! I absorbed all the ways my husband would prepare a space when hanging photos or art. Therefore he may not be with me now, but his knowledge has been transferred to this student over the years. 

I am still playing around with the template placement, as I want 18" to be between the window frame and the painting, 18" between the two paintings, and then 18" between the second painting and the balcony molding above. I will sit with this for a few days, and then begin the measurement calculations for J hooks on the walls. If you have an opinion about this layout or other insights, feel free to leave a comment. The framer encouraged me to get a professional to hang these paintings. But I decided that I did not want to pay someone hundreds of dollars to do something I was equipped to manage, I just have to take my time. I figure if I can single handedly manage this house, all our finances, and caregiving, then no way are these two picture frames going to stop me. 

Thursday, July 31, 2025

Thursday, July 31, 2025

Tonight's picture was taken in July of 2008. Mattie was six years old and we went for a walk on Roosevelt Island that day! Mattie loved the big rocks along the trail paths and climbed these rocks each time he visited. To me Mattie looked like the picture of health here, yet weeks later was shockingly diagnosed with cancer. 

Quote of the day: Treat every small victory like you just won the Super Bowl. ~ Lewis Howes

Today I decided NOT to give my dad any pain meds. NOTHING. No Oxycodone and no Tylenol. Only his back pain patch. I did not discuss this with him, because then he would perseverate on it, which would only be counterproductive. I feel the pain medication isn't a good match for my dad and if he could do without it, it would be better for him. Thankfully, transferring my dad out of bed was more manageable today as was getting him into the shower. YES he complains, but he isn't screaming in pain. So I view this as a small victory for the day. Don't get my wrong, I still have my hands full, but I feel more confident in my abilities to manage his physical needs. 

Once I get my dad into the shower and safely in his shower chair he typically can shower himself. I have everything lined up for him, from his shampoo to soap on a bath type sponge. Normally, while he is showering I can make/change his bed linens, and clean his bathroom. Prior to his hospitalization, my dad knew exactly what to do with shampoo and soap. Today, after ten minutes of my dad being in the shower, I looked inside and NOTHING had moved. This clued me into the fact that he has NO IDEA what to do with shampoo or soap anymore. So in essence I took a second shower myself today, as I got soaked, cleaning him in the shower. With each hospitalization, there is always a decline in my dad's cognition, which makes caring for him challenging. 

I did get my dad to his memory care center today. It was his first day back after three weeks away! After dropping him off, I did chores like grocery shopping. For the past three nights, my dad has refused to eat dinner, so I bought things like fresh bread to entice him to eat, as my dad is a big bread lover!

Literally when I woke up this morning, I said to myself, maybe after doing chores today, I can lie down a bit, in hopes of managing my intense migraine, which I have had since I hit my head while fainting on Monday. However, it never works out for me, because as soon as I came home and put away groceries and dealt with the laundry, my mom wanted to go out. 

I took my mom to Starbuck's, which is one of her favorite places to go! Keep in mind, I haven't been there for three weeks. As soon as I walked in, all the people behind the counter shouted out.... HI VICTORIA! Apparently they missed me and I told them why I was coming in! One of the people I talk to there is a young woman named Alex. She eventually wants to become a nurse. We talked about the complexities of life, but the importance of trying to find moments/glimmers in all the daily turmoil. I told Alex that coming into Starbuck's and chatting with her and all the other wonderful people behind the counter, brightens my day. Her response to me was..... some days I think what ever I do, doesn't matter. I told Alex..... this is not true. Her kindness, smile, and taking the time to talk to customers ALWAYS matters. They may not tell her, but I guarantee that is true, as it is definitely the case for me, as coming in and chatting with her and others provides me an escape, a moment of peace. She literally stopped what she was doing behind the counter and said.... thank you for telling me this, this made my day!

Remember I also know several regulars at Starbuck's. One of whom came up to me and said he missed seeing me the last three weeks! This fellow served overseas and has an amazing German Shepherd, who was a working dog! I connected with this furry friend immediately when I first met the duo months ago. 

While at Starbuck's I took one of the Foundation's research grant applications with me to read. Mattie Miracle awards many innovative research grants a year! One of the applications I was reading today fascinated me. Maybe it fascinated me because I could personally relate to the content (given my own predisposition to cancer, which I explained in yesterday's blog). The research pertains to investigating our Psychosocial Standards of Care with children who are genetically predisposed to developing cancer. They do not have cancer currently, but their probability of getting cancer is HIGH! Therefore, these children endure constant scans and assessments over the course of their entire lives. That may not sound like a big deal, but psychosocially it is huge! It is daunting knowing that at any point you could be diagnosed with cancer, it is like you are a walking time bomb. Of course the issue is there are NO psychosocial services for patients like this, because they don't have the disease. Yet these "patients in waiting" have chronic psychological distress, anticipatory anxiety and other life disruptions. When our Psychosocial Standards of Care were designed, they were designed for ALL children diagnosed with cancer. This research proposal would like to investigate extending the Standards to those predisposed to the disease. This study greatly resonated with me, and frankly until this was brought to my own attention (professionally and personally) it was no where on my radar scope. 

Wednesday, July 30, 2025

Wednesday, July 30, 2025

Tonight's picture was taken in July of 2009. Mattie was in the outpatient clinic with Anna, his physical therapist. Anna came into our lives very early in Mattie's treatment process. She was a God sent, as she built a great rapport with Mattie, was a creative thinker, and was committed to helping Mattie regain his strength and abilities. At that point in time, we thought Mattie had no evidence of disease and our goal was to help Mattie walk again so he could return to school in the Fall. The Fall never came, as Mattie died two months after this photo was taken. 

Quote of the day: Hearts can break. Yes, hearts can break. Sometimes I think it would be better if we died when they did, but we don’t. ~ Stephen King

This morning my dad had a physical therapy session. I am glad that the session took place at home rather than at his memory care center, because it was important for the therapist to see what I am up against at home. Given my dad is taking pain meds, the byproduct is constipation. That may not sound like a big deal, but these moments are like hell on earth with someone who has Alzheimer's! It entails constantly running to the bathroom, to attempt to go, and yet frustration when nothing happens. The whole physical therapy session was like this (running back and forth), and thankfully his therapist is a kind and very patient soul. In the middle of the session, I gave my dad a laxative, because I had to get a jump on this issue. I will never forget being in the ER for 12 hours during COVID with my dad, who was suffering from an impacted colon. So when my dad faces constipation, I do not wait for it to resolve itself. 

What I have deduced is there is a big difference between therapists who worked with my dad in the hospital versus therapists who know my dad over time and have worked with him extensively at home. Today I reviewed the methods taught to me in the hospital for my dad to get up the stairs as well as the strategy to get into the shower. I actually HATED both hospital strategies, mainly because they seem unsafe! What works in the hospital, in a controlled environment, actually looks quite different at home. Of course the biggest complaint I have is the therapists in the hospital never asked to see photos of our home, to understand the spaces I need to negotiate with my dad. Knowing the space, would have shown them that their strategies needed to be altered. Today's therapy session concurred with my perspective and we came up with ways to maneuver my dad safely around the house. To me this is frustrating because wouldn't it have made sense to have a family meeting in the hospital right from the beginning to discuss these logistical issues and hear my perspective? It is NOT how the system works, which is why the system truly is not family centered and ultimately not focused on the patient's best interest. 

Though I did not want to leave my dad today, I had a scheduled doctor's appointment in the afternoon. This was an important appointment with a breast specialist, that I did not want to reschedule. After last year's assessment with her, I learned that I am classified as having a 40% chance of getting breast cancer, compared to other women my age (who have a (9% chance). I know when I heard this last year, I was very upset, especially when given three options of care: 1) being scanned and monitored every six months, 2) taking medication that can reduce the chances of getting cancer, but of course there are potential side effects, and 3) having mastectomies. It is like the ridiculous to the sublime. It is much harder facing these conversations and decisions without my husband.  

The breast specialist was running late today. So I sat in the exam room waiting. I have been suffering with a terrible migraine all day and felt my stress level was over the top. When the doctor walked into the room, she apologized and told me it was a difficult day. I absorbed what she was saying, and then connected the dots. She deals with cancer and therefore, I knew immediately she had to have some tough conversations with patients. I remember those days all too well! As soon as I heard it was a tough day for her, I took several steps back in my mind. I became extremely patient and compassionate, because I knew several lives were altered and forever changed today after hearing their diagnosis! Knowing this, I had NO PROBLEM with the doctor running late! 

My doctor works from 7am to 7pm every day! She doesn't complain about this, why? Because this is a person who truly LOVES her job! She believes in getting to know the whole patient, not just talking numbers! In fact, she was telling me about her daughter who recently had to go see a doctor. My doctor was coaching her as to what to ask the doctor! Her daughter basically told her that NO DOCTOR wants to hear about how she is emotionally doing and this caught my doctor by surprise. I then said to my doctor..... your daughter is absolutely correct! Most doctors don't want to hear about emotional issues, but yet if they did, they have NO IDEA what to do about them! So in essence medicine today cares for a patient in a silo, in a compartment, only seeing a small segment of the whole person. Any case, my doctor said to me.... who is going to take care of me when I should need it? My response to her..... I hope if and when you need medical support or guidance, you find a doctor just like you. A doctor with compassion. She literally grabbed my hand and held it! To me this showed me the human side of this doctor, which means a great deal to me.  

Tuesday, July 29, 2025

Tuesday, July 29, 2025 -- Mattie died 805 weeks ago today.

Tonight's picture was taken in July of 2008. In fact, it was around July 4th! This was one of our traditions to visit the US Aquatic Gardens in early July, because this was when the beautiful lotus flowers were in bloom. Truly it was a magical experience and I always joked that this was the best kept secret in Washington, DC. As the Gardens are off the beaten track, behind a neighborhood! You would never know they were back there, unless you were purposefully visiting! Mattie loved this space, and since my parents were visiting from California, we took them to this glorious site! It is hard to imagine that only weeks later, Mattie was diagnosed with cancer. 

Quote of the day: Every night, I laid awake with your memories flooding through my eyes with the hope to be with you when sleep arrived. ~ Anmol Rawat

This morning, I had no idea how I would be feeling after yesterday's fainting spell. Getting out of bed was indeed difficult, as my ankle and leg hurt. I do have a black and blue on my forehead, between my eyes, but icing it has helped. Last night before going to bed, I used my trusty tennis ball. Anyone who has spent any amount of time with me, knows I go NO WHERE without a tennis ball. I learned this trick from my physical therapist YEARS AGO. The way to work out muscle knots effectively is to roll a tennis ball over them. Trust me it is painful, but it speeds up the healing process. This is how I have been able to manage my neck pain. If you recall I have had muscle knots and spams in my neck since June. While my dad was in the hospital, I decided to aggressively treat my neck. The tennis ball rolling was super painful on my neck, but over about a week, I noticed a massive difference. So my hope was to have the same effect on my ankle and leg. Of course, I am always thankful for Advil. Some days I couldn't function without it!

After I got up and fed Indie, I went directly to getting all my dad's pain meds. I now know how crucial it is to pre-medicate him before I attempt to get him out of bed. When I went into his room, he was practically falling out of bed. If I did not have the bed rail, he would have been on the floor. The problem with all of this is my dad is DEAD WEIGHT. He is unable to roll, unable to lift his body from the waist, and all of this makes it practically impossible to reposition him. Naturally I had to figure it out, because I couldn't get him to swallow pills without sitting upright. 

Once I accomplished mission impossible, I then went to get myself together, clean the first floor, and made breakfast. I proceeded upstairs to do my morning routine with my dad and get him downstairs before 10am, so he could have a nursing and physical therapy evaluation. If these professionals only knew what I had to do to accommodate their timing. Keep in mind I asked them to come later in the day, but they couldn't fit us in, so if I wanted my dad evaluated for services, I needed to comply with their schedules. 

When the physical therapist arrived, he thanked me for accommodating his schedule. My response to him, was I am used to accommodating everyone. I told him in my house the notion of the caregiver putting on her oxygen mask first before helping anyone else doesn't exist! It doesn't exist, because for me there is no oxygen mask available. My main oxygen mask left me on September 23, 2023. The therapist got my point of view about the oxygen mask (an analogy that is way overused and ineffectual with caregivers) and then after assessing my dad, he completely understood what I am balancing. Keep in mind that I know this therapist well, as both of my parents have used this in-home healthcare company (which provides nursing and PT) over the last three years. I was referred to this company through my dad's memory care center. I mention this because this therapist knows that typically my dad doesn't express pain. Now it is very clear my dad is in pain. The physical therapist encouraged me to get down to the bottom of this pain, even if that means advocating for an MRI. 

After my dad had his assessments, I decided to contact his rehab doctor and his cardiologist, as the hospital asked me to make follow up appointments after my dad's hospitalization. So I called both offices and only landed up with MORE frustration. Want to know when the first available appointments are..... try November! I literally lost it on the phone! I explained to them that my dad has been in the hospital for two weeks and needs post care evaluations. Waiting three months for this to happen is unacceptable. By the time I finished with both offices, they connected me with their office managers, who magically have the ability to change schedules around! So I am telling you this for your own edification! 

During my dad's hospitalization, his blood pressure medications were completely changed and I want an appointment with his actual cardiologist to discuss this, which meant that I refused to see a nurse practitioner or another physician. That may sound ridiculous, but in all reality I have learned with my dad that it matters to have the consistency of one provider who knows the nuisances of his condition. After the last hospital discharge, I complied and saw a cardiology nurse practitioner. Big mistake. She put my dad on a statin, despite me telling her my dad is allergic to statins, and I was left to manage the horrible side effects. So now NO, I will not be flexible with providers because it isn't in my dad's best interest. If you want to know why I was nicknamed the "bull dog" in my dad's latest hospitalization, it is for a reason. If you are under my care, I will do whatever it takes to ensure that everything medically possible is done to ensure stability and healing! So it is okay, I wear my "bull dog" title with honor!

I did take my parents out for frozen yogurt today. This is an easy journey outside the house and something my dad likes. When I returned home, a terribly tired feeling came over me. So I went upstairs to sit on my bed for a while, Indie was right by my side, and I actually napped for 45 minutes. That may not sound like a big deal, but for me (a person who never naps) this was huge. It is my hope that my dad can return to his memory care center on Thursday. Overall, with each hospital admission, I see another decline in my dad both mentally and physically. My dad can no longer remember anything (past or present). He doesn't remember being in the hospital, falling, needing six paramedics to take him down the stairs, or even anything that happened today. In addition, he got used to hospital foods and now refuses the food that I cook. His appetite is minimal and my mom is worried about him. As for me, I take it one day at a time, because if I looked at the bigger picture of my life, I would never get out of bed in the morning.