Saturday, June 13, 2026

Saturday, June 13, 2026

Tonight's picture was taken in June of 2002. Mattie was two months old. As you can see we were having a peaceful moment outside on our deck. Truthfully back then I had no idea if I was coming or going. I was exhausted as Mattie rarely slept and I was recovering from abdominal surgery. Yet in comparison to my life now, I would welcome turning back the hands of time, and reliving this exact moment again and again!

Quote of the day: Just as it is impossible to explain childbirth to a woman who has never given birth, it is impossible to explain child loss to a person who has never lost a child. ~ Lynda Cheldlin Fell

I think I finally got to sleep at 2am. Friday was a nightmare of a day, with mortgage assumption paperwork and then losing power. We have a generator for a reason, but last night it wasn't working and just like with any crisis, I first panic. But I quickly can regulate from panic to action and thankfully I called my electrician. Yes I have his cell number and YES he actually answers whenever I call. It is thanks to Bob that our generator was up and operational by 9:30pm. Which is good because our neighborhood did not get power restored until 9:30am today! 

What I have learned is that without electricity, I have no cell phone service, I can't access email or the internet! Why? Because our neighborhood has poor cell reception and therefore I need wi-fi. I truly feel this is a safety concern, especially when caring for my parents. But what also was a rude awakening was I truly did not know where our flashlights were in the house. Yes I have one or two, but not enough to give off light. I never used to worry about this form of preparation because my other half excelled in this. So even a blackout can be an emotional experience for me, and what it drove home once again is how alone I am! I did round up flashlights and thankfully I have many oil candles! But I do not wish to relive such intense stress like last night again. That said, I am purchasing larger flashlights for the house and I think it is important to always have gasoline in one's car, because with a power outage, it is impossible to get gas. Given that I make many trips to the ER with my dad, I always have a pretty full tank of gas, because I never know when the next emergency will hit. This gives you some understanding for my internal dialogue. A dialogue that is always hyper alert, awaiting the next shoe to drop. Unfortunately in my case, it typically happens. 

This evening I made cookies. My new tradition is for every birthday, holiday, and event, I send my former in-laws cookies. I used to purchase them gifts of all kinds over the years, but now I think baking something from my kitchen and sending it to theirs is appreciated. It seems to perk up their days and I certainly know how I feel when I get a cookie. I made the classic chocolate chip and in my note I wrote.... a classic cookie for a classy dad!

Friday, June 12, 2026

Friday, June 12, 2026

Tonight's picture was taken in June of 2003. Mattie was a year old. That weekend we took him to Great Falls Park. This Park has it all..... from wildlife to rapids and waterfalls. Though I tried to take a photo with Mattie, you can see that he wanted to get down and explore everything that caught his eyes!

Quote of the day: There comes a point where you no longer care if there’s a light at the end of the tunnel or not. You’re just sick of the tunnel. ~ Ranata Suzuki

All I can say is................DEAR GOD! I truly can't make up the kind of day I have had. It is 11:30pm, and I have had NO dinner and have been strung out for hours. The day was moving along as usual, until I got home with my dad at around 4pm. It was at that point I got an email and a phone call from my mortgage agent. Just when I think the round of questions and additional documentation will stop, or I will get a break from it, NO... MORE gets piled on me. Today's request was over the top, because it required documentation from my parents. Documentation I did not have. My typical mode of operation now is PANIC and ANXIETY. After I flip out, I then attack the problem. I am absolutely sick of problems and crises. It is wearing me out. 

While trying to compile documentation, we had a massive storm. The storm took out our power! Normally that wouldn't be a problem, as we have a generator. But the generator wasn't working. Without power, my mom was going crazy. As in my house, we have poor cellular service and we need Wi-Fi. Without Wi-Fi, nothing works. So I was dealing with my mom, who was walking around in circles, my dad was asking the same questions over and over, and I knew I needed a solution. As it is very hot out, I knew we couldn't stay overnight in the house without air and electricity. It was at that point, I reached out to my electrician. I couldn't text him, as I had no Wi-Fi, so I walked around outside until I got a bar of cellular service and I called Bob. He answered immediately and asked.... what's wrong! He was at home, with his granddaughter, but he could hear I was distraught. He called his company and he had them dispatch a generator specialist to the house. Thankfully Shaun showed up in 90 minutes and diagnosed the problem. I must have been so hysterical that he gave me a free battery replacement. As I told him, he is my generator angel! It is thanks to Shaun that the generator is working and we have lights and are operational.

But in the process of losing power, this impacted my alarm system. I spent the next two hours on chat with an agent doing a step by step process! Thanks to this wonderful person, I resolved that problem too! It is now 11:40pm, and my nerves are shot! It is a horrible way of living and I see no light at the end of the tunnel. Just more tunnel!

Thursday, June 11, 2026

Thursday, June 11, 2026

Tonight's picture was taken in June of 2002. Mattie was two months old. Giving birth to Mattie literally took me over 24 hours, and then I landed up having an emergency c-section. While having the c-section, a large (non-cancerous) tumor was found on my bladder. Therefore I needed surgery on that right after the c-section. Recovery from abdominal surgery was very challenging and in addition to that, I was facing postpartum depression. Not having family that lived locally, I did not have support with a newborn. So despite how I was feeling, I learned that I had to rise to meet the beauty and challenges of motherhood. As I always say, Mattie was my life's greatest teacher. 

Quote of the day: Hearts will never be practical until they are made unbreakable.  ~ The Tinman, The Wizard of Oz

Given that I spoke to my mortgage agent a day ago, I figured I would get a break from him for the rest of the week! WRONG! Seriously when I see that 1-800 number calling me, it triggers instant panic. Today I was out at lunch with my parents. So in essence I was juggling a lot, and don't you know it, the agent called me. No matter what I am doing, if I see that number ring through on my phone, I immediately pick it up. 

Today's call was a total pip! He wanted immediate information! Information I couldn't give him because I was out! I was then told, I had to supply this information today, otherwise they would close my application! All I can say is ....... DEAR GOD! I then told him I would be home within an hour and would get it done. That was bad enough, until he told me some of the questions the bank has, meaning they don't believe that my parents actually live with me. I admit my situation is on the more unique side of the equation..... as not every adult child is the full-time caregiver for her parents. I literally wanted to invite him and the bank to my house, so they could see what a nightmare I live each day! 

I then told him that this whole application process is stressing me out. I can't help that I am divorced, nor can I help my financial situation. Of course the bank could care less! But I told him my current life situation is a product of great loss and trauma. He and the bank don't care, but I am very tired of being judged as the woman who doesn't work and I feel like they think I sit around all day eating bon bons! I should live so long. That is and was NEVER me. I have always worked hard at whatever I do, and though my bank account doesn't reflect that hard work, don't discredit my existence in such a demeaning manner. 

Any case, I got home, fully changed my dad, got my parents situated, and ran to my computer to manage all the requests. In addition to the incredible stress this mortgage assumption is adding to my life, it is also making my mom highly upset and anxious. So much so that this whole issue makes her shake like a leaf. It is criminal that at this stage of my parent's lives, they are made to feel this way. There is a great deal weighing on me and I will spare you my inner dialogue, venom, and disgust I have for the reason why I am in this position. 

Wednesday, June 10, 2026

Wednesday, June 10, 2026

Tonight's picture was taken in June of 2002. Mattie was two months old and VERY ON! Here's the funny part about Mattie! I remember when he was a baby, I called the pediatrician in a panic. It sounded like Mattie was having a hard time breathing. He was making a very strange noise and he continued to do it repeatedly! The doctor was great on the phone and we walked through all the medical emergency signs to look for.... of which Mattie had none! After several minutes on the phone with the doctor, want to know what we concluded? Bottom line....Mattie was laughing! Even as a baby, he probably thought it was a riot seeing me running around in a panic..... so we learned quickly that Mattie had a major sense of humor. 

Quote of the day: Each problem that I solved became a rule, which served afterward to solve other problems. ~ Rene Descartes

For the last several years, I have been a part of a collaborative research team with two other non-profits and scientific researchers. Our mission is to implement the Psychosocial Standards of Care at hospitals around the country. There would be NO Standards of Care if Mattie Miracle did not existed! That may sound bold, but it is the reality! Sometimes it takes people who have suffered through the lived experience to evoke change in the healthcare system. In any case the Standards are designed to provide optimal psychological and social support to all children with cancer and their families throughout their cancer journey. Why were Standards needed? Because there is a standard of medical care for all forms of childhood cancer. Whether you are treated in California to New York, the medical protocols are the SAME. But the emotional and social support families have access to are ALL OVER THE MAP! They vary greatly by hospital, and it depends on what kind of private philanthropy a hospital has to financially support such supportive care services. Mattie Miracle wanted to see this CHANGED!

To me the Standards are Mattie's legacy, they are what was born out of his pain, suffering and death. However, I did not do this advocacy work alone. I did it with my other half for over a decade. Therefore, any time I reflect on the Standards, it is impossible not to also reflect on our long history together and the beauty of what our union created.... Mattie and the Standards of Care. 

Yesterday, I learned that one of our research proposals was accepted at a major international conference. The research team reached out to me and really wanted me to present at this conference with them! I can't tell you what a shot through the heart this was for me. Not because of their ask, that was lovely, but because my life has changed so dramatically. I do not have the freedom to go anywhere or do anything because of my caregiving, but that is only half of the trauma. The other half of the trauma is knowing that I carry the advocacy of the Standards alone, that my side kick and conference mate, is gone. I am not sure I will ever get over this intense pain, this loss, or the hollowness it leaves inside of me. 

Meanwhile for weeks, I have been working on Mattie Miracle's 17th Anniversary Video. I create one every June. To me it is a labor of love, which is getting harder and harder to do because of all I juggle behind the scenes. Nonetheless, here is it. When I wonder..... what have I been doing for the last 17 years (of which I never earned a $1)? The video is my answer! Since Mattie's death, I have devoted my time, skills, and talents to the cause!

Tuesday, June 9, 2026

Tuesday, June 9, 2026 -- Mattie died 849 weeks ago today.

Tonight's picture was taken in June of 2004. Mattie was two years old. I absolutely love this photo! Mattie and I were playing with his Mr. Potato Head toy. One of the accessories in the set was this yellow pair of glasses. Instead of Mattie putting them on Mr. Potato Head, he wore the glasses himself! Upside down no less! To me this was a priceless moment, which was why I snapped a photo!

Quote of the day: Heartbreak is something you learn to live with as opposed to learn to forget. ~ Kate Winslet

It was another early morning. My dad was scheduled to meet with a new physical therapist today. One of his usual therapists is on vacation and so this woman visiting today was supposed to cover for my dad's therapist over the next two weeks! In any case, this woman contacted me last night, requesting to come today. In addition, she gave me a two hour time frame, 10am to noon. Meaning, she would show up someone within that window of time. I did not like that notion, especially since none of my dad's other providers do this! My life is stressful enough, as I manage the daily routine of both of my parents, not knowing exactly when this therapist was coming today, practically pushed my apple cart right over the cliff. I even called the home care agency and complained about this policy! 

Any case, when this therapist showed up, we were like oil and water. She did have a session with my dad, but after today, I told her NOT to return. I will wait for my dad's therapist to come back from vacation in a week. I no longer have the patience or strength to be playing games with new attitudinal people. 

In addition to everything else, I also baked four dozen chocolate chip cookies for my dad's caregivers at his memory care center. They are celebrating caregiver appreciation week and the leadership of the center asked families to help celebrate the week with treats and cards. Naturally I could have bought cookies, a cake, and a card, but instead, I thought it would mean more if I baked cookies and made a handcrafted card! 

I got a call from my mortgage agent. He was calling me as I was awaiting for the physical therapist and while I had cookies in the oven. He asked if I could talk, and I literally said..... it depends on how long you need to talk to me for! Any case, today's call with just a check in, as he confirmed that they have all my documents that were requested and now I have to await for the second round of requests! Seriously that I have not jumped off the roof yet, is remarkable. In the midst of that I sat down to do my monthly house budget. When I reviewed all the bills I have to pay, what came to my mind was..... I must really be hated to have been left with all of this stress to manage on my own. I range from sadness to intense anger on any given day, and frankly I do not see a good future ahead. All I can see is constant stress, financial worries, and being alone.... as my family of three is now just ONE, a very lonely number!

Monday, June 8, 2026

Monday, June 8, 2026

Tonight's picture was taken in June of 2003. Mattie was a year old! He wasn't walking independently yet and this frustrated Mattie to no end. Yet he would scoot around the first floor, exploring, creating, and building. Mattie was busy working on something in the dining room, and he wasn't expecting me to be behind him taking a photo! Nonetheless, look at that adorable smile I received!

Quote of the day: Some people are going to leave, but that's not the end of your story. That's the end of their part in your story. ~ Faraaz Kazi

For two years, I have been communicating daily with a woman who lives in England. I met her through an on-line support group. I hated the support group, but it only took one session for this woman and I to instantly connect. So much so, that we have shared everyday together for the last two years. Some days, we are each other's life line, because it is hard to describe the nature of the pain, trauma, and heartbreak that we are experiencing. Our stories are different, but yet there are many overlaps. Last night, she went to a choir concert, and sent me a short video of one of the songs. When I heard the song, I immediately said to myself..... I know this! Because the song was performed in a big building, where the acoustics weren't the best, I couldn't hear the word. But I was determined to find the name of the song I was hearing. It came to me around 11pm. The song is..... and so it goes! There are many versions of this song, but the one that I absolutely love was performed by Billy Joel. I found the video and sent it to my friend. 

Though this song was written decades ago, it speaks so beautifully to heartbreak, pain, and being vulnerable. It turns out that Billy Joel wrote it after a break up. No surprise to me. If you have never heard this song, I attached it below. But the song ends with....

So I would choose to be with you

That's if the choice were mine to make

But you can make decisions too

And you can have this heart to break

And so it goes, and so it goes

And you're the only one who knows

It is hard to live life with a heart broken. I am hoping with time that this hollow, empty, and decimated feeling will ease, but I am now two years and 9 months into this journey, and the pain remains. 

Sunday, June 7, 2026

Sunday, June 7, 2026

Tonight's picture was taken in May of 2004. Mattie was two years old. That week we took Mattie to Boston to visit his grandparents. Along our journey we were headed to the Stone Zoo. But before going to the Zoo, we stopped to get Mattie some French fries. This was not an unusual sight..... I typically sat in the backseat with Mattie when he was a little fellow. But in this particular case he was very focused and eager to get his hands on the French fries. Of course no photo would be complete without Mattie's sippy cup of milk. We had a sippy cup with us regardless of the season, temperature, or time of day. It was Mattie's security blanket. 

Quote of the day: Take the time to enjoy the little things, for one day you may look back and realize they were the big things. ~ Robert Brault

My friend Heidi sent me this photo today! Ironically it was taken on June 7, 2016. This is Heidi's daughter Isabel, on his high school graduation day! I have known Isabel since she was in middle school. Now she has graduated from medical school and is doing her residency. Truly amazing to see a young girl develop into a young woman! It is remarkable what can happen in ten years. Isabel spent her middle and high school years doing a great deal of volunteer work for Mattie Miracle, and I would like to think my story has influenced her career decision. 

This photo was taken at Washington Harbor, in Washington, DC. You can see the famous Watergate buildings in the background. At one time, I lived only a few blocks away from this Harbor. Sunny and I walked in this area daily! I miss seeing the Potomac River, I miss the way my life used to be, and as tonight's quote points out.... take the time to enjoy the little things. Because from my perspective, nothing is guaranteed, nothing is stable, and the only thing that is for certain is constant change. 

This weekend, I heard two different stories of fraud perpetrated on two people that I know. What kind of world do we live in that we need to live life in fear and angst? Given what happened to one of my friends, I was afraid that the person I was communicating with by text was NOT actually my friend. So literally I responded.... prove that it is you! This is how nuts I have become! My friend responded with just three words. It was from those three words that I knew immediately it was indeed my friend! I truly give her credit that she selected words that were instant triggers that only she and I would know. I know when dealing with fraud and identity theft, it isn't always easy to think straight, but I was impressed with her clarity! 

I actually relate to the panic and horror both of these women faced this weekend. We live in a world in which we have to be forever vigilant, on top of things, and bordering on paranoid. Who can we actually trust? In my case, I have learned that even people I thought I was the most closest to, also can't be trusted. I will forever be effected by this reality. 

Saturday, June 6, 2026

Saturday, June 6, 2026

Tonight's picture was taken in June of 2005. Mattie was three years old. This kiddie pool came from my former mother-in-law. All the grandkids used it and Mattie loved it whenever we visited Boston. So she gave the pool to Mattie to take home. I can't tell you what our deck, outside our apartment, used to look like! We had the sand box, the pool, and toys on it. But this made Mattie happy and he loved his outdoor time. Even as a baby, Mattie was calmer and happier being outside.... regardless of the weather. So it was through Mattie that I learned the beauty of being surrounded by nature. 

Quote of the day: If you consider yourself a victim, you are not going to have a good life; if, however, you refuse to think of yourself as a victim–if you refuse to let your inner self be conquered by your external circumstances–you are likely to have a good life. ~ William B. Irvine

Are we a product of how we grew up? Are we influenced by certain norms in our formative years, and therefore these norms guide our lives? In my case the answer is YES! I had the opportunity to chat with the manager of our local diner today. I have gotten to know her over the last couple of years. She is younger than me and has experienced many life lessons. Here's the conclusion we have from our experiences.... we both feel that women need to be coached at an early age to be financially independent. Even if married, they need their own money, their own accounts, and to truly adopt the philosophy that they have to be independent from their spouse. 

I grew up in a traditional household. That said, my mom was a working professional, got a higher education (which was rare for women in her age bracket), and has a strong personality. Yet it was my dad who paid the bills and dealt with all the financial headaches of life. Naturally I learned a great deal from my parents, but unlike them, I am not a numbers person. Therefore, they sheltered me from the financial stresses of life. When I got married, again, I brought that traditional mindset into my marriage. I stayed out of the finances, because I deemed that as not my strength. But that was a big mistake. It was a mistake that I was treated as inadequate and even a bigger mistake to accept that pronouncement. 

What I have learned from my divorce is many painful things. But first and foremost is that I will always be in control of the finances. I will always know what is coming in and out every month. I hope to never, ever, relive the last three years of my life and it will take me some time to feel a level of financial stability and safety. 

At the end of the day however, I continue to wonder will I ever feel better? Will I ever feel more emotionally stable? I miss being married, I miss having a spouse, and most of all I miss who I deemed was my closest ally and friend. It leaves many, many holes in my life and as I learned with Mattie.... some holes can never be filled.

Friday, June 5, 2026

Friday, June 5, 2026

Tonight's picture was taken in May of 2004. Mattie was two years old. That weekend we took him to the National Arboretum. By the entrance they had this wonderful water feature filled with koi. They sell food for the koi, so we thought Mattie would be interested in seeing the fish eat. As you can see, Mattie did not want to feed the fish himself. He left that to me, because he was unsure how to feed the fish or how they would come up out of the water to eat. So though I was not a nature buff, I learned to become one with Mattie! As you can see, Mattie was intrigued by the koi and was watching the whole process closely!

Quote of the day: No matter how bleak or menacing a situation may appear, it does not entirely own us. It can’t take away our freedom to respond, our power to take action. ~ Ryder Carroll

My dad's nurse visited this morning at 10am. She is helping me manage my dad's wound care. We have been managing two pressure sores for months now. It is a vicious cycle in which the pressure sores look like they are healing one day and then the next day they are open again and bleeding. I am working around the clock on wound care and I can't tell you the countless number of foam wound care bandages I have bought in two months. Medicare only provides a VERY limited number..... try a box of 10 bandages, which they expect will last me ten days. I can go through a box of 10 in a day and a half. Mainly because where the wounds are located, the bandages get messed up and pull away from the skin multiple times during the day. 

After that appointment, I dropped my dad off at his memory care program, and went grocery shopping. While checking out, my favorite store employee was there and I said hello to her. Frankly given her reaction, I assume most people don't greet her or chat with her. I do every week! I know about her mom and dad, and I always do a check in on how they are feeling. Today, before I left, she told me she had the weekend off and was going to try to have a more relaxing two days, away from people! I think when you work in the service industry, of any kind, you absorb other people's stresses, demands, and even not such nice behavior. I heard her and I said to her.... I appreciate you, you do an excellent job here, and I look forward to seeing you each week. All I can say is you would have thought she won the lottery. She was so thankful for what I said. 

As I was driving home, my mind was swirling with all sorts of emotions. When I am in the are alone (the only place I can be alone .... when running chores), the feelings of my many losses typically hit me. I am at a traffic light, waiting for it to turn green, and my eyes were filled with tears. I happened to look over to the car next to me, and there was a man, staring right back at me. At the same time, we smiled at each other. It was the smile that flipped an emotional switch in me, from tears, to once again, experiencing the kindness of another human being. 

I then visited our local bank today. I LOVE LOVE LOVE my bank. I know the managers and all the tellers. Literally I walk in and I am greeted with.... hello Victoria! One of the tellers cares for her mom, who is in her eighties. I have been following her mom's saga with knee surgery and her recovery for months. But in our conversation today, the concept of kindness and humanity came up. The topic of losing our humanity came up! My problem is I always look for the good in people. I can make excuses for bad behavior and try to understand each person's plight in life. But what I notice (for the most part) is when you act human.... listen, show kindness, compassion, and understanding.... people usually can rise to the occasion and reflect these beautiful traits right back. 

All these interactions today, inspired me to get the courage to come home, focus, and process through mortgage assumption paperwork. Ironically, the two people I could always count on in my life to give sound advice are no longer able to help me. Therefore, even doing mortgage paperwork reminds me of my many, many losses.  

Thursday, June 4, 2026

Thursday, June 4, 2026

Tonight's picture was taken in May of 2004. Mattie was two years old. That day we took Mattie to the National Mall. When we lived in the city, the Mall was literally blocks from our home. It was the best location! If I could erase the last five years and could have remained in that location, my life would be so different now. What I love about this photo was that Mattie was ALL business. He was literally propelling me forward because he was eager to get to the reflecting pool, where all the ducks congregated. Those were the days and I am quite certain while in that moment, I had NO IDEA how lucky I was, and how DRASTICALLY life would be altered. 

Quote of the day: The secret of the care of the patient is in caring for the patient. ~ Francis Peabody

My parents had their cardiology appointments today. My dad sees this doctor every six months and my mom, once a year. We LOVE this doctor. He is close to my age and he is Italian. Given our common backgrounds, he gets along splendidly with my parents. I met this doctor in 2022, when my dad was having issues with his vitals. His pulse would drop to 40 and below, when exercising and moving about (a normal pulse is 60 - 100). Given the severity of my dad's issues in 2022, his primary care doctor got us an appointment with a cardiologist the very next day. That was when we met this amazing cardiologist. You want to know how much time he spends with us at each visit? Try an hour! We got in at 11am and he literally talks to us through part of his lunch break! A very unique, compassionate, and highly competent physician. If we could only clone him. We have gotten to know about his wife, his children, we have followed him along his weigh loss journey, his training for a marathon with his daughter, and even about his summer plans. Any one who thinks that relating to a patient like a human being doesn't matter, has never been a patient. In fact, the way doctors make us feel is directly related to how effective we feel the medical care is being provided.

Today the doctor was telling us about his family's summer plans. I listen to this man talk about his love of his family and what he does to ensure their happiness and I wonder..... how lucky his wife is! How is it that I did not meet him or someone like him? NO ANSWERS, but ONLY MORE QUESTIONS.

Meanwhile, I have anxiously been awaiting my MRI results. Thankfully they came in today and nothing was found. Another year down! I do not take such good news lightly, because I learned first hand with Mattie how life can change in a second, after just one test! I truly do not know how I could handle being sick or incapacitated because I balance so much in any given day. I am the rudder on our broken down ship!

But of course any good news in my life is always followed with another problem. On my doorstep today was a two inch package from the bank. I am so sick of paperwork, legal mumbo jumbo, and financial stress. I have gone from a woman who did not pay a bill, to a woman who is handling bills, medical expenditures, credit card fraud, a divorce, lots of lawyers, and now trying to assume my mortgage. It is beyond hateful and just when I think my life will stabilize, another nightmare falls onto my plate. I feel like I am being tested..... how much can one woman take? I guess we will find out.