Friday, March 27, 2026

Friday, March 27, 2026

Tonight's picture was taken in March of 2009. Mattie was in the child life playroom and doing a hands on activity. This was what Mattie LOVED most. As you can see he took the whole process seriously has he had his googles and gloves on! I have no idea where we would have been without that playroom. It was a slice of peace, where we could take a pause from our scary, uncertain, and stressful reality.

Quote of the day: A memory is what is left when something happens and does not completely unhappen. ~ Edward de Bono

This morning when I dropped my dad off at his memory care center, the program director came out to talk with me. I have been complaining about the center's schedule/activity calendar that is on-line. The schedule is supposed to give caregivers like myself a glimpse at what my dad is doing at the center each day. In my opinion the schedule is so bare bones that it is impossible to understand what the activity is and most definitely it is not helpful in triggering my dad's memory at the end of the day. In any case, as the director was discussing this schedule issue with me, she also suggested that I may like meeting other family caregivers whose loved ones are at the center. Guess what my reaction to that was? If you guessed NO, then you get a gold star.

Group support never resonated with me, not even when I was in graduate school. The problem with groups is I feel either the competition among members (meaning whose situation is worse than someone else's) or I want to help each member and therefore I am unable to focus on my own issues. That is me on a good day, but now, I am not only dealing with caregiving, I am dealing with a horrible divorce, managing a household, finances, the Foundation, and life without Mattie. Frankly as I told the director, I do not see a group that will work for me... I was different before my divorce, but now I am off the charts different. 

Later this afternoon, I sat back down at the computer to try to recover photos and files. This is a massive project that will take months, as the extent of the shared drive issue is far greater than I thought! I focused on 2002 photos today, the year Mattie was born! If I had lost these photos, I would be hysterical. So I recovered many of them and have backed them up. 

This photo was taken on our deck in Washington, DC in March of 2002, a month before Mattie was born. By that point, I was on medical rest, where I couldn't spend much time up on my feet. As you can see, I was very pregnant and holding one of my favorite cats, Patches! Patches was the best! Which was why I nicknamed her, Nurse Patches. If I was sick, she stayed right next to me, and when Mattie had cancer, she did her nursing rounds (that is before we had to board her at the vet for a year, as we were living in the hospital and never home to care for her). 

Thursday, March 26, 2026

Thursday, March 26, 2026

Tonight's picture was taken in March of 2009. Mattie was pictured next to one of his art therapists, Jessie. Mattie created this piece of modern art. Little did I know, but every project Mattie build and designed while he was hospitalized became his legacy items. This painting hangs above my desk and I see it daily, and of course am reminded of this moment in time!

Quote of the day: Leave nothing for tomorrow which can be done today. ~ Abraham Lincoln

This morning my dad's physical therapist came over for a session. My dad works with four different therapists. This therapist takes my dad outside, whenever the weather is warm, and they do the entire session in the fresh air. What I concluded is this WORKS for my dad! He literally walked 25 minutes today on our street. Which is unheard of, because typically he complains and wants to sit down. While my dad was working with the therapist, I encouraged my mom to walk outside too! So she and I walked around the block. At one time my mom walked without holding my hand, but now I can tell she psychologically prefers to hold my hand, so that she doesn't fall. 

I had the plan of acknowledging Foundation donations today! Forget it! I got derailed on a funding application. This application showed up in my email box this afternoon and trust me when I say.... this isn't an easy application. I do it yearly, but ironically it never gets easier, as I have to do an annual report, financials, bar graphs, pie charts, and budgets! I devoted hours to this today and I just submitted the application thirty minutes ago! To me this is a huge accomplishment! 

One of the bar graphs I created today illustrated Mattie Miracle's overall funding from 2010 to 2024. Can you believe that in 14 years, we raised over $2 million dollars for the cause?! 

Mattie Miracle is a labor of love. As I always say, "it is my second baby, in memory of my first baby!" I am very proud of the funds we have raised, the work that we have done and continue to accomplish and of course I am deeply grateful for all of our supporters who stand behind our mission! 

Wednesday, March 25, 2026

Wednesday, March 25, 2026

Tonight's picture was taken in March of 2009. That day we took Mattie to the circus. It was our first and last trip to see the circus. Mattie was gifted a special VIP booth, which enabled him to attend and not be around crowds where he could have potentially gotten sick. It was a big event for Mattie and he absolutely loved it. He was glued to watching the show and before the show started we bought Mattie several light up circus toys. He had a ball seeing them glow when the lights were dimmed in the arena. It was a special moment in time and his smile said it all!

Quote of the day: I go to nature to be soothed and healed, and to have my senses put in order. ~ John Burroughs

This morning after I dropped my dad off at his memory care program, my friend came over to catch up and walk. I haven't walked the neighborhood since her last visit, which was months ago! I used to be a person who walked daily. Sunny made sure of that! But after Sunny died and then caregiving alone, I have had no interest in walking anymore. Which of course is not good for my physical or emotional health. Walking was something I always did with my other half as well! We loved and appreciated nature and even when facing great loss and trauma.... we kept walking. It became a form of our therapy! It is one of the countless things I miss!

If you have been following my saga, I am still trying to recover lost electronic files, photos and documents. I thought the problem was contained to just a few years of photos! NOPE! It is far more extensive and I am desperately trying to address this.... by doing a little recovery work each day! All I know is I have been robbed or a future, there is NO WAY I will have my past erased. 

I have been working on recovering photos from 2023. As I was downloading photos, I came across a series of post it notes! I naturally saved all the actual notes, because they mean a great deal to me. They remain in my closets and I still look at them daily to remind myself that I was loved and this was NOT a figment of my imagination! Keep in mind that I have MANY notes from over the years, but these series of notes occurred in March and May of 2023, which is ironic because by September of 2023, I was separated. If I am confused by what transpired, then all I have to do is look at these notes!  

I used to find notes all over. 

Yes even in the refrigerator!

In my cabinets!

On my dust rags (which I use daily), so it makes sense to leave me a note there!

On my handheld vacuum! Another thing that I use daily!

Tuesday, March 24, 2026

Tuesday, March 24, 2026 --Mattie died 838 weeks ago today.

Tonight's picture was taken in March of 2009. I will never forget this day! Mattie was on this bone scan machine for two hours! Keep in mind that Mattie was unable to eat or drink anything from the night before, in order to prepare for this scan. For two hours Mattie had to sit still and manage this machine coming close to his body. His reward for all of this was he got a vanilla frosted donut and trip the restaurant on the hospital campus for a special lunch! Which included shrimp.... a Mattie favorite!

Quote of the day: At the end of the day, we can endure much more then we think we can. ~Frida Kahlo

In between caregiving and other tasks, I continue the hard task of retrieving files, data, and photos that were lost on my shared drive. I try to do a few folders a day. Today I worked on finding photos from 2022. I would be very unhappy if I lost this photo of Sunny! Sunny loved his home and he was a devoted companion to the day he died. 

In this photo, Sunny was sitting on our front step. He loved checking things out while we were outside and he was so well behaved that if we called him, he listened and complied. After Mattie died, life was absolutely grey. It was hard to interact with the world, and then I rescued Sunny. The greyness of Mattie's death was still all around me, but Sunny had a way of breathing new life into my world. When we lived in the city, each day that I walked Sunny, someone would stop me to comment on how beautiful Sunny was! With Sunny by my side, I reinvested back into the world. Now without Mattie, without Sunny, and without my other half, life is bleak. 

On my wedding anniversary in July of 2022, I received this card and this 

Willow Tree figurine of a married couple. The front of the card reads,

"I've said it before and it's still true.... I don't know what I'd do without you"

As you can imagine I have great commentary about this, because a year later, I found myself separated!

When I look at this photo of myself from July of 2022.... yes I looked tired from caregiving, but I looked much happier. When I look at myself now, all I see is a  shell of my former self. 

Monday, March 23, 2026

Monday, March 23, 2026

Tonight's picture was taken in March of 2009. Mattie was home between hospital admissions and as you can see we were having a busy afternoon building Lego sets. Legos were therapy for us, because while building and creating, we took a mental pause from cancer, treatment, pain, and fear. Literally that year, we constructed every Lego kit in the store. If it made Mattie happy and engaged.... we did it!

Quote of the day: Friendship … is born at the moment when one man says to another, ‘What! You too? I thought that no one but myself…~ C.S. Lewis

This morning after dropping my dad off at his memory care program, I came back home and took my mom to the salon in Washington, DC. The last time we were at the salon was in November. Between my dad's hospitalizations, winter, and my life, I just did not have it in me to go to the city. It has been hard balancing my mom's hair at home, and I was thrilled that we both could get haircuts today and nails done. Keep in mind that I have known the salon owner since I was in my twenties and my manicurist has been doing my nails since 2009, when Mattie died.

Given the years I have been working with these ladies, they have become more like friends. We know each other's stories, hardships, and nightmares. Each time, I meet my manicurist, we pick up from where we left off. It is quite adorable because for years she would tell people when I came into the salon that she was seeing her therapist today. Meaning me. Of course I wasn't her therapist, but what this always said to me was the type of sharing and chats we had, were not typical for her with other customers. 

What I do know is that when I enter the salon now, there are people there who truly want me to feel relaxed even if it is for just an hour or two. They are aware of my intense caregiving and the incredible loss of my marriage, not to mention the loss of Mattie. I in no way think that I am the only person in the world who suffers grief and trauma. I am always cognizant that each of us carries our own hurts and experiences and honestly every time I hear a woman share her story with me (whatever that story may be), my conclusion is we truly are amazing. It is incredible the challenges and heartaches we face and the courage and strength we have to navigate these nightmares. I really believe these experiences give us the insights to empathize with others. 

What I noticed after Mattie died, was people felt at ease sharing their issues and concerns with me. I am not sure if they thought I would understand and not judge them or the simple fact that I lost what was most precious in life that whatever they told me I could mentally handle! Whatever the reason, despite all that has happened to me, I still appreciate other's sharing their stories with me, because I believe within every story there is something that can be learned and appreciated. 

This is one of the many photos I lost but have been working to retrieve! It is a labor of love to find every file, photo and document I lost from the shared drive! So why am I showing you this photo? Because this was our apartment in Washington, DC. A stone's throw from the salon I went to today. Every time I go to the salon, I pass our apartment complex. I always look up at my apartment windows and remember what my life USED TO look like. This was one of the gardens we created on our patio. I always called this space "my secret garden." As I look at these windows now I ask myself..... would my life look different if we never moved to this house? My answer is always YES! 

Sunday, March 22, 2026

Sunday, March 26, 2026

Tonight's picture was taken in March of 2009. I will never forget that day as several United Airline employees came to visit the clinic. They brought teddy bears with them and Mattie was excited to meet them and very happy to accept the bear. These visits from outsiders were a hit or miss for Mattie. Sometimes he did not want to hear noise or interact with anyone, but this was a good day and I am so happy I captured that moment in a photo. 

Quote of the day: Spring is when you feel like whistling, even with a shoe full of slush. ~ Doug Larson

With the official start of spring yesterday, I got a burst of energy to take on some cleaning projects. I did all the bed linens and today, I dusted everything upstairs and thoroughly cleaned the bathrooms. I actually like to clean, it makes me feel productive and seeing things organized and clean makes me feel in better control of my haphazard life. The problem however, is I do not always have time to clean. Not the way I want to. But with a beautiful 80 degree day, I was motivated to take on certain projects. 

Of course with spring upon us, that means that I will need to think about buying annual plants and begin gardening. It is a large under taking for one person, but I find that taking it a little bit at a time is the only way it can work. Last year the gardening associate at Lowe's got so used to seeing me, that she would ask me how my planting was going each week. As always the hardest part is getting started. Once I start something then it is a lot easier to continue the project. Gardening however, was something I always did with my other half. I can't tell you how many gardens we planted over the course of our 35 years together. We even shared this love with Mattie, who also got in the mix. Which is why I used to call Mattie, "Farmer Brown."

For the most part I prefer to do things myself. I am practically forcing myself to do this because I want to be self reliant. I have learned a painful life lesson, as the only one looking out for my best interest is me! However, there are some tasks that I sometimes need help with and last week, when my gardener came over to weed and mulch for the spring, I showed him my deer fencing. A lot of it was coming down in the backyard and I just did not want to take a ladder and deal with it. His crew did it one, two, three and for them it was easy. So I view that as one chore off my long to-do list. 

If you have been following my saga, that you know I LOST photos and documents from the last ten years from my shared drive. Tonight, I decided to Google.... can missing files by retrieved from a shared drive? Of course the answer was yes, but it depends. The first thing recommended to do was to look for a recycling bin in the shared drive. I had never seen a recycling bin on the shared drive before, but I looked for it, and FOUND IT! I then clicked on the years that were missing. I immediately went to 2016, and sure enough, all my files were in the recycling bin, well at least for 2016. Needless to say, I will be spending this week on copying them from the recycling bin and then saving them on the cloud and my external hard drive. I NEVER want to have this happen again!

Saturday, March 21, 2026

Saturday, March 21, 2026

Tonight's picture was taken in March of 2009. Next to Mattie was a his best preschool friend, Zachary. These boys were inseparable in preschool, and since they played together every day after school, I got to know Zachary quite well. He was a loyal and devoted friend and that day they built this Lego Star Wars kit in the hospital. It is quite meaningful that now, as Zachary is in his twenties, that I am working with him on a non-profit based class project. I have no doubt this would make Mattie smile to know that we are still connected!

Quote of the day: Aversion and anger almost always arise as a direct reaction to a threatening or painful situation. If they are not understood they grow into hatred. ~ Jack Kornfield

Last night, I went to my computer to look at files and photos and to my dismay, I couldn't find them. I can see my very organized file folders on the screen, but when I click on them, they are empty! For years, we used a shared drive in our home. So we could each have access to files and input things in one place. It made sense, but honestly unless you are computer savvy this method is a nightmare. It is a nightmare because something happened to the shared drive and I have lost material from 2016 to today! So ten years worth of photos and documents. We used to have an external drive that backed up these materials, but when I took it to Best Buy they said it was inoperable! So can you imagine how I feel about losing ten years worth of data? I have had every emotion in the last 24 hours from sheer hatred, anger, hostility and absolute disgust. I have lost so much in a short period of time, but to lose memories and documents is over the top. I stayed up to 2am, to at least back up everything related to Mattie Miracle. Thankfully all those files of 17 years are intact. It is my personal life, that is missing. I don't like being erased in reality or virtually. 

I certainly have some photos on my phone and though these photos are backed up on the cloud, I can't seem to get them onto my computer. Literally I am ready to flip out, because I haven't had one peaceful day since my separation and now divorce. In between my dad's physical therapy sessions, countless bathroom accidents and taking my parents out for lunch, I have been glued to the computer in hopes to finding solutions. 

While out at lunch, a song started playing in the diner. I literally only have to hear the first few notes of this song, and I instantly know it is Peter Cetera's, Glory of Love. Yes I am a Cetera fan, but I attach this song below from the Karate Kid movie series. Now why is this song/movie series a big deal? It is a big deal because in 1984, my parents moved me from New York to California. It was a very difficult move for me, to leave behind my school, family, friends, and everything I held dear. It was in the summer of 1984, that the first Karate Kid was in theaters and I saw it. I clung to that movie, because it was about a young kid who was also transplanted from NY to LA, and the challenges he faced along his journey. It may sound silly, but to an impressionable teenager, who felt misplaced, identifying with a movie character facing similar feelings helped me. It made me feel less alone. Over the course of my life, whenever I heard the song, Glory of Love, play on the radio, it was like a premonition..... that not something bad, but something good was about to happen. Whether this is true now or not, hearing this song today, temporarily made me smile. Maybe it is a sign, maybe I will find all my missing photos and documents, or maybe I will find moments within the future where I do not feel in total crisis, angry, confused, and overwhelmed. It is the hope.  

Friday, March 20, 2026

Friday, March 20, 2026

Tonight's picture was taken in March of 2009. It was a special day at the hospital, as Mattie attended the ribbon cutting ceremony for the child life playroom. The playroom was sponsored by Toys R Us, which was why their giraffe mascot was in attendance. As you can see Mattie and the Geoffrey the Giraffe got along great. Mattie had a wonderful time at the whole event. I have no idea how we would have survived without this playroom, as this space enabled us to have moments of fun and normalcy! In the playroom, Mattie was a child, not a child with cancer.

Quote of the day: Love and kindness are never wasted. They always make a difference. They bless the one who receives them, and they bless you, the giver. ~ Barbara de Angelis

After dropping my dad off at his memory care center, I headed to the grocery store. While in the car, the song, The Fall, came on. If you haven't heard this song, I included it below. It is a reflective country ballad about embracing life's hardships, acknowledging that personal failures, pain, and struggles are worthwhile for the sake of the journey. It emphasizes resilience, suggesting that the "ride" (life) is worth the "fall" (failures/hardships).

Typically I do not like the notion that everything happens for a reason, or that we gain perspective and strength through pain. I don't like these notions because to me they are platitudes used to help those of us in pain find hope and meaning. However, this song somehow resonated with me. There are plenty of times when my mom will say to me now..... "I wish you never met your ex-husband, and instead that you married someone else who appreciates and loves you." I totally understand what she is saying, because if I were in her shoes and someone hurt my baby (Mattie), all I can say is .... God help you. But as I remind my mom, if I did not marry my ex-husband there would be no Mattie. Mattie was meant to be born and I was meant to be his mom. 

This afternoon, I took my mom to Starbucks for tea. As soon as I walked in, a manager came over to talk with me. He asked me if I received my free gift! Honestly I had NO IDEA what he was talking about. So he elaborated. A month or so ago, a woman was in Starbucks with her husband. They were sitting right next to us. Suddenly I noticed her husband slumping over and about to pass out. She tried to catch him, but she couldn't manage him alone. I instantly jumped up to help her. She was very embarrassed and I told her not to be. She then wanted to get her car to transport him to the doctor, but she did not want to leave him alone. So I sat right next to him and made sure he remained conscious and upright. When she pulled up, I helped her get her husband outside and to the car. 

So that brings me to today. Apparently this woman came back to Starbucks this week (almost two months later) because she wanted to leave me a note and to also pay for our teas and snacks. This is the note the manager handed me....

 

Victoria,

Thank you for helping us last time when my husband almost passed out on the chair next to you. I just want to show our appreciation and you accept it!

I have to tell you I am still stunned that this woman would take the time to write me a note and to pay for our entire order! When I helped her, I did this because this is just who I am. I had no intention to receive kudos and a gift. I was deeply touched by this note and generosity today from a complete stranger. Somehow this note restores my faith and hope in humanity, as we live in a crazy world, where each day we hear of someone hurting someone else. What this letter confirms to me is that there are good people/angels among us, and despite the horrors we see and hear on the news or experienced personally, we always need to true to ourselves, because as today's illustrates.....one drop of kindness in the world has a way of spreading. 

Thursday, March 19, 2026

Thursday, March 19, 2026

Tonight's picture was taken in March of 2009. That was a special day at the hospital, as it was the ribbon cutting ceremony for the child life playroom. Before this playroom existed, there was no place to play or gather other than the hospital hallways. In fact, when Mattie started treatment at the hospital there was no playroom. I can't tell you what a gift it was when it opened. Which was why, Linda (Mattie's child life specialist) invited Mattie to cut the ribbon at the ceremony. Linda understood how important this space was for Mattie. If you want to know why Mattie Miracle funds child life, it is because of this amazing woman pictured next to Mattie. I called her my "medical Mary Poppins!" There is no way Mattie or I could have survived each day without her creativity, skills, advocacy, and compassion. 

Quote of the day: He has not learned the lesson of life who does not every day surmount a fear. ~ Gaius Julius Caesar

I think I finally fell asleep at 1am. I was absolutely strung out from dealing with multiple fraud alerts yesterday. I was telling my friend what I had to do yesterday to address these issues and her response to me was... wow! She said she had to re-read my message multiple times because she was unaware of some of the processes I was telling her about. What she reminded me is that I went from a person who knew close to nothing about managing household finances, dealing with budgets, paying bills, and maintaining a house, to someone who puts out figurative fires and crises every day. 

I would like to say that I woke up more at peace today, but I did not! I think when you are scared out of your mind, and have experienced countless and unexpected nightmares over the course of the last two years, it has left me hyperalert. I am constantly waiting for the next shoe to drop. But when I don't know who has committed yesterday's fraud, it makes me even more anxious. What I do know is I have followed every step recommended to me.

This morning, my dad had a foot doctor appointment. Just to get him up, showered, and dressed was a feat. But I got him to his appointment and then brought him home to nap for two hours before lunch. I took my parents out to lunch today and I have to say it is a humbling experience as my mom is glued to her phone, surfing Facebook, and my dad is out of it. Though my mom functions better than my dad, she is needing more and more support. When we are out of the house, she doesn't want to walk independently and therefore holds my hand (she will not use a cane or walker). It makes it fun when I am juggling my dad as well, but it is amazing what you get used to. I also think that being connected to her cell phone keeps my mom oriented to time and day, because my mom also has a form of dementia. I do not report this often, but I am not just caring for one parent, I am indeed caring for two. On days like yesterday, when I felt so insecure and needed support, the reality is my parents can't help me. NOT AT ALL! 

Wednesday, March 18, 2026

Wednesday, March 18, 2026

Tonight's picture was taken in March of 2009. When Mattie was on cancer treatment, he went through different food cravings. Honestly because Mattie was dropping weight dramatically, whatever he wanted to eat, he got. For the most part, chemotherapy made Mattie lose his appetite altogether. But on occasion, he made food requests. It did not matter what hour of the day or night these requests came in.... we made it happen. As you can see, this was Mattie's French fry and chicken finger phase! 

Quote of the day: I’ve had a lot of worries in my life, most of which never happened. ~ Mark Twain

Mark Twain's quote makes me laugh! I wish that my worries were just in my head. Unfortunately many of my worries are real and frankly even things I haven't worried about or even thought could be possible have become my reality! I thought I was going to write about some of the emails I received today from psychologists around the world. They wrote to me about the impact of Mattie Miracle on their work. Honestly these emails really touched my heart! Perhaps I can write about this tomorrow. 

Tonight I am STRUNG out! On Sunday, I was alerted to fraud, using my name and opening up accounts. Today, I received a call about this and got to speak to several fraud departments. From there a cascade of other tasks had to be done. I have now learned the steps of what one has to do when such a crisis arises! I am SICK, SICK I tell you of crises! Every day it is something else, and I miss being a family unit that solved problems and issues together. 

As I told my lifetime friend, Karen, tonight I am so anxious, wound up, and upset that I could literally smack someone!