Monday, March 30, 2026

Monday, March 30, 2026

Tonight's picture was taken in March of 2005. Mattie was almost three years old by that point. I took a photo of the living room, because it illustrated what I used to refer to as.... hurricane Mattie. This was a typical afternoon of play, things would be everywhere! After each play session, I would clean up and put things back in place. As Mattie got older, he would help me, because I felt it was an important lesson to learn the art of picking up after one's self, and what one had to do as part of a family system. A life skill!

Quote of the day: For a chronic migraine, there are no triggers, life is my trigger. For chronic migrainers there are no cures, there are only patches that will get you through to the next bout. Have we tried, acupuncture, herbal remedies, diets, standing upside down on our heads? Yes. The answer is if we have gotten diagnosed as chronic migraines then we have tried anything, and if by chance we have been able to get up and put our mask on that day please let us wear it, under our sunglasses and large hats. It took a lot to get there, and ain’t nobody got spoons for that. ~ Emily A

It is 5:45pm, and I have a full blown migraine. I was fine all day, and then I went outside to pick up branches and twigs. Also fine. While doing that, I decided to run a load of laundry.... jackets and fleeces for all three of us. What I did not realize, was that in one of my fleece's I had small burnt out lightbulbs in my pockets. I collected these bulbs from the garden lights over the weekend, as I had to replace 12 lightbulbs. Given all I juggle and how I jump from one task to the other, I forgot to throw the bulbs out, and I did not realize they were in my pockets before I ran the laundry. When I opened up the washing machine after it had run its cycle, I found glass everywhere! I spent two hours cleaning up the glass and the stress of this whole incident was enough to bring about a migraine. I could beat myself up over this, but then I remind myself, I am doing the impossible each and everyday! So this is as much as I can write today. May tomorrow be a better day!

Sunday, March 29, 2026

Sunday, March 29, 2026

Tonight's picture was taken in March of 2009. That day Team Mattie gave him this cute bunny hat for Easter. Mattie put on the hat, but if you can tell it wasn't a good or happy day for him. I think as Mattie's cancer journey continued, he felt more and more debilitated and therefore it isolated him more and more from his friends. Mattie was very aware of the fact that his life looked different from healthy children. For the most part, Mattie did not dwell in these feelings like an adult would, but nonetheless, if you scratched the surface, the issues were very evident. 

Quote of the day: As we advance in life it becomes more and more difficult, but in fighting the difficulties the inmost strength of the heart is developed. ~ Vincent van Gogh

Sunday is the only day of the week where I can sleep past 6:30am. However, at 3:45am, I was awakened by the power going out! Yes I am that sensitive that I can be jolted awake with any sort of noise or changes. While I jumped out of bed, I also heard a firetruck and ambulance. It was so loud that I thought it was on my street! It wasn't. I later found out that there was a car accident blocks from me that took down an electric pole, affecting over 300 customers. We were without power for six hours. Thankfully we have a generator, but today, I got a crash course in understanding when the generator is on and when we are on utility power. Literally you should have seen me, as I was walking around the outside of the house in my pajamas trying to hear whether other neighbors' generators were on! The sound outside was intense, as you could hear generator motors everywhere! The reason I did this, was because I have a Ting app that lets me know about the electrical activity in the house. The Ting app kept telling me that power was restored. However, if that was the case, I was confused as to why the generator was on! Which is why I went outside to see if neighbor generators were running, or just mine. I have now learned how to read the Ting app and I understand when they tell me power is restored, they are basically telling me that the generator is running. What I need to then see is a follow up message about being back on utility power. Honestly the things I am learning, I could write a book! I went from someone who knew nothing about the inner workings of the house, to being almost in full control!

Any case, it was a bad start to the day, and it only got worse with managing my dad's irritable bowel issues. I am quite certain the average person would not take him out. It is just too labor intensive. Literally I changed my dad before leaving the house. As soon as we got to the restaurant, I had to change him again, and yet again while eating. All I can say is my parents are lucky that I have a cast iron stomach!

Today I worked on recovering photos from 2016 (if you have been following my saga, then you will know that something happened to my shared drive, in which I lost photos, files, and other documents for decades). This was one of the precious photos I recovered! Taken in July of 2016. The month and year we rescued Indie. In fact we adopted her over the 4th of July weekend, which is why she is named Indie, for Independence Day! Indie was the queen of the household back then, but that all ended when we brought Sunny home in September of 2016!

I found this photo of our garden fountain! This fountain was created for me by Mattie and my other half. It was my mother's day surprise! This beautiful fountain used to sit on the deck of our Washington, DC apartment. It was filled with shells that we found over the years. I miss this fountain, but I will never forget the love and sentiments behind this meaningful gift. After Mattie died, I used to run the fountain, and the sound was a reminder of the special bond we shared. 

Saturday, March 28, 2026

Saturday, March 28, 2026

Tonight's picture was taken in March of 2009. Mattie was admitted to the hospital for his next round of chemotherapy. If you look closely, you can see that the chemotherapy was red in color (Doxorubicin). With each admission, we decorated Mattie's IV pole with 1,000 praying origami cranes. These cranes now hang in my office, but we had great hope that the chemotherapy would work and that it would give Mattie more time with us. What I love about this photo was Mattie's ability to watch a movie and disengage from the infusion process!

Quote of the day: Cooking and baking is both physical and mental therapy. ~  Mary Berry

I got it in my head this week that I wanted to bake Easter themed cookies. As I was searching for recipes, I came across Italian Easter Cookies. Here's the irony of this, when I was a little girl, my grandmother baked cookies similar to this, in the sense that they had the same texture and consistency. My grandmother did not frost her cookies, but in my opinion, frosting always makes me smile. It is more labor intensive to frost cookies, but it's definitely more festive!

The kitchen island was filled with cookies and the whole house smelled like a bakery. Though I have never found baking therapeutic, not like cooking, I did find focusing on this today took my mind off of my usual reflections, worries, and issues. 

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.