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.  

Monday, July 28, 2025

Monday, July 28, 2025

Tonight's picture was taken in July of 2007. Mattie was five years old. That summer, I enrolled Mattie in group swimming lessons. It was an indoor pool, and the recreational center's policy was that parents were NOT allowed by the pool. We could watch from an observation window upstairs. Which was why I captured this photo at this angle! Overall, I would say that Mattie was very cautious about water and swimming, but he made great strides in this class and I am happy I never missed any of these precious moments.  

Quote of the day: Heat exhaustion and heat stroke are both serious heat-related illnesses, but heat stroke is far more dangerous and potentially life-threatening. Heat exhaustion is characterized by a core body temperature below 104°F (40°C) and symptoms like dizziness, headache, nausea, and weakness. Heat stroke, on the other hand, involves a core body temperature above 104°F (40°C) and can cause confusion, seizures, loss of consciousness, and even organ damage. 

When I think my days can't get worse, I rise to the occasion. As I awoke, I saw that I had a text message from Steve, the fellow who works for my landscape company. Steve helps me with all things outside of the house. Truthfully there is nothing he can't fix. Steve was coming over to fix my backyard gate, which was broken by the mowers about a week ago. Steve had to specialty order hinges for the gate. I literally hopped out of bed and started getting myself together, the cat fed, and my dad medicated with his pain meds. I need to medicate my dad almost two hours before getting him out of bed, otherwise, the process will be excruciating. 

Steve arrived at 8:30am, and I went outside to chat with him. He is a multiple trauma survivor and therefore, we literally speak the same language. If you are thinking there is a romantic connection between us.... WRONG! I still wear my wedding ring and in my eyes, and that of the Catholic Church, I am still married. In addition, Steve has a significant other. We do not relate to each other in that way, we relate to each other however, as two people who have had numerous hardships in life, and we can appreciate each other's journey. 

While talking to Steve, I was under a shaded tree, but all of a sudden, my mouth felt like cotton, a got a massive headache, was sweating, felt nauseous and I knew I wasn't well. I suggested to Steve that we go into the garage so I could get water out of the refrigerator. Steve followed me, and somehow I got the garage door open and had my hand on the refrigerator door handle. At that point, Steve said, I wasn't acting right and started to faint. I think I hit my forehead on the door handle (as I have a black and blue), and my left ankle buckled underneath me. I was about to fall backward and would have, but Steve caught me. He lowered me to the garage floor and there I stayed with him for thirty minutes. I have never fainted in my life, today was a first. 

I knew exactly what was happening to me because my husband has been a victim of heat exhaustion multiple times. In fact, when we were dating, we went to Sea World in San Diego in the 1990s. While there, we sat under a tree, and Peter literally tipped backwards and passed out. The heat had gotten to him, but typically I do not respond to heat this way. However, I think my body and mind are on overload! I am working around the clock, under a great deal of stress, and then combined with heat, it was the perfect storm. 

When I got back in the house, it wasn't like I could lie down and take care of myself. NO! I had to make breakfast and do my morning routine, which also included getting my dad up, showered, dressed, and downstairs. In addition, I had a scheduled bone density scan at the hospital around noon. I made it safely to the hospital and actually took many deep breaths and closed my eyes during the bone scan. 

I returned home and I decided to take my parents out for frozen yogurt. I had to see if my dad had the energy outside the house and to see how he ambulated! The manager at our local frozen yogurt store is a love. Her name is Jennifer, and she and I were both born on July 25. She wrote to me on my birthday and I told her my dad was in the hospital. She was thrilled to see us today and gave my dad his yogurt for free. When I left, she came over to me and said MAY GOD WATCH OVER YOU FOR WHAT YOU DO EACH DAY! I can't tell you how much that meant to me!

This was today's surprise at my doorstep. My friend Heidi sent me a tea infuser and a whole bunch of wonderful teas! I am very excited to have a infuser and can't wait to start brewing tea tomorrow! I would have to say my two favorite things in the world are tea and sweets! Very grateful for having the best of friends. 

Sunday, July 27, 2025

Sunday, July 27, 2025

Tonight's picture was taken in July of 2007. Mattie was five years old. That day, Mattie attended his preschool friend's birthday party! It was a gymnastics party! Mattie was one of about three boys! But Mattie LOVED it, he got into it and was following along! As you can see Mattie loved the color orange, which is why this is the official color of Mattie Miracle. 

Quote of the day: Everything that slows us down and forces patience, everything that sets us back into the slow circles of nature, is a help. Gardening is an instrument of grace. ~ May Sarton 

It was a very challenging morning. Actually challenging doesn't do my morning justice. My dad's physical therapist warned me that mornings are HARD! Which was probably why she insisted that my dad have a dosage of oxycodone before getting out of bed. NOW I GET IT! This morning, after feeding Indie, I came back upstairs with the goal of helping my dad to the bathroom and then back to bed until I was ready to start his morning routine. Trying to get my dad out of bed was like hell on earth! He was screaming in pain. Mind you my dad is a big man, I can't move him, and he can't move himself! My dad has never been able to roll on his side, which is typically how we all get out of bed. But in addition to this he can't lift his head off the pillow, and he can't move his legs. This is because he fell on his back on July 11. It felt like I was trying to lift dead weight, but the dead weight was screaming. I finally got him out of bed and to the bathroom. While my mom was watching him, I ran downstairs to get his back pain patch, his oxycodone and Tylenol. Ironically my dad's nurse was a God sent yesterday! She basically said... fill all the scripts! You may not need them or want to use them, but if you DO need them, you will have them! THANK YOU LARA!

I got my dad medicated and back to bed with the hope that 90 minutes later, I would be able to move and shower him. But getting my dad back into bed was equally horrific. It was so difficult that I had to literally stand on the bed in order to have leverage to push his back forward in order to shove pillows behind him. It was a nightmare and I literally said to myself..... if this is as good as it gets, I will not be able to care for my dad. 

After I got myself together, cleaned up the first floor, and made breakfast (because my mom was waiting for it), I went back upstairs to attempt to move my dad and get him in the shower. With the pain meds on board, it was challenging, but far more manageable. At the hospital my dad's occupational therapist, who I disliked, taught me how to do a shower transfer! Keep in mind she never asked to see our home set up! I kept telling her that our shower door is too narrow for my dad to walk in side ways with the walker. She wouldn't listen! But I was correct, it doesn't work! So I had to come up with plan B. 

Despite being the hospital and given several showers, my dad needed to be thoroughly cleaned! Once showered, and dressed, I had to get my dad downstairs. I was concerned that down the stairs was going to be as bad as up. But down was super easy! In fact, I saw no difference from now compared to before hospitalization. It is up that is difficult, because at the end of the day my dad is tired.

I was hoping I could send my dad back to his memory care center tomorrow, as the doctor cleared him to return. But my dad has slept the entire day away. He was only awake for meals and two, three minute walks. He has no energy and I do not feel comfortable sending me out of our home, until I know he is more stable. I truly hope it gets better with each day, because right now managing his pain is very difficult. 

Saturday, July 26, 2025

Saturday, July 26, 2025

Tonight's picture was taken in July 2003. I will never forget that moment in time. We took Mattie to the beach for the FIRST time. He was 15 months old and it was on this trip that Mattie began to take his first steps! It was a very exciting time. Of course the summers in North Carolina are hot, so that afternoon, we came inside for a while to cool down. We had book time on the couch and it was no wonder what book Mattie picked out.... Good Night Moon! It was his all time favorite book, and ironically this book was given to me by one of my graduate school mentors as a baby gift. It was not a book I grew up hearing, but I came to appreciate the words and all the visuals! To this day, I can still recite the book, that is how often we read it! In fact, when my husband was on travel, we would text message each other good night, using several of the lines from this book!

Quote of the day: The good times and the bad times both will pass. It will pass. It will get easier. But the fact that it will get easier does not mean that it doesn’t hurt now. And when people try to minimize your pain they are doing you a disservice. And when you try to minimize your own pain you’re doing yourself a disservice. Don’t do that. The truth is that it hurts because it’s real. It hurts because it mattered. And that’s an important thing to acknowledge to yourself. ~ John Green

This morning I received a text message from our pharmacy that several medications for my dad were ready for pick up. The pharmacy also let me know that one of the new medications was flagged because it could interact with other drugs my dad is taking. I am VERY thankful to CVS! Because it clued me in to look at what was prescribed and get down to the bottom of the problem! I literally reviewed the medications prescribed today and saw that all of my dad's blood pressure medications were altered. I am tired and juggling a lot, so I did not appreciate learning that my dad's medications were changed throughout his hospitalization, and yet I WAS NEVER ALERTED to these changes! 

So I immediately called the hospital this morning and spoke to my dad's nurse. She was in the middle of working with another patient and promised to call me back. Ideally I wanted to pick up all the medications from CVS before my dad came home. But after waiting 90 minutes, I told my mom, that we should just go to the hospital. While driving, my dad's nurse called me and I explained the issues. She told me she would look into it and have answers for me when I arrived. 

When I got to the hospital, I met with my dad's nurse, who explained the changes to me and also told me one of my dad's previous medications was stopped altogether. We then reviewed my dad's blood pressure readings for all 15 days and I agreed to continue the new medications and set up an appointment with his cardiologist soon. The discharge process went very smoothly, and the same nursing assistant that admitted us to the unit, was also the same fellow who helped us with discharge. Jeff is the kind of nursing assistant you want to clone. He exudes positivity, kindness, and compassion. He absolutely loves his job, he loves interacting with patients and families, and it shows! When you work with someone who loves what they are doing, it makes the whole interaction go smoother, if feels like a more meaningful connection, and leaves you feeling like you are in good medical hands.

My dad was sleeping the whole car ride home and getting him into the house went smoothly. But he was luggage, and spent about six hours sleeping before dinner. In fact, I wasn't sure I could wake him for dinner. At the hospital, he got used to eating at 5pm, and was in bed at 7pm. Which doesn't match my time schedule at all. 

This evening, my dad managed to get up the stairs. He is clearly strong enough to do it, but he is physically exhausted, which made the stairs challenging for me. I am hoping that with more days at home and getting acclimated to life outside of the hospital that he will be more alert, engaged, and active. But I am happy to say that the bed rail I assembled works and he can't reach the latch to open it, so hopefully this will keep him safe throughout the night until I get him up in the morning.

Friday, July 25, 2025

Friday, July 25, 2025

Tonight's picture was taken on July 25, 2009. This was my last birthday with Mattie. Mattie's child life specialist, Linda, gave Mattie that cake to celebrate my birthday. At that moment in time, I really thought we would have more time with Mattie. He had just gotten off treatment and the goal was to physically rehabilitate him so he could return to school in the Fall. Little did I know that two months later, Mattie would die. 

Quote of the day: Maybe it’s not about having a beautiful day, but about finding beautiful moments. Maybe a whole day is just too much to ask. I could choose to believe that in every day, in all things, no matter how dark and ugly, there are shards of beauty if I look for them. ~ Anna White

I have to admit, I HATE birthdays. I have hated my birthday since 2008. After all how could I forget that Mattie was diagnosed with cancer two days before my birthday. It is hard not to connect Mattie's diagnosis to my birthday.  

This morning, while looking out the kitchen window, a butterfly landed on the patio column. He hung out there for a bit. I attributed this to a Mattie sign! As no other morning this summer have I seen such a sight!

After spending 8 hours in the hospital yesterday, on top of many more hours over the last two weeks, I can safely say that I am exhausted. I was hoping to sleep a bit later this morning, but Indie had me up at 7am. I started my morning of chores and eventually found my way to the grocery store. I pushed myself to do this because once my dad is home, I can't leave him. He will need constant supervision until I deem him safe at home. While out in the store, I bought my dad's favorite nurse an orchid plant and two specialty cookies. I also bought a tub of chocolate chip cookies for the nursing unit as a thank you for caring for my dad. 

When I returned home from the grocery store, I found this beautiful floral arrangement sitting on my front doorstep. When I was driving up the driveway, I literally thought someone left me a frosted cake outside my door. This whole thing is made of flowers! I truly think this is stunning and the big sunflower on the top is symbolic of Team Mattie. As countless sunflowers were given to me each time we were home between cancer treatments. The sunflower became my symbol of love, compassion, and community. 

The note with the flowers isn't signed, so I have NO IDEA who sent me these flowers. I have called the flower store and left a message with the hopes that someone can clarify this gift tomorrow. Needless to say, I think they are beautiful!

The next  surprise came from my friend Carolyn. Cupcakes from Georgetown Cupcake. Why is this so touching? Because this was Mattie's favorite cupcake store, and in turn it became mine. I can't tell you how many of these cupcakes Mattie ate over the course of his treatment. Seeing these today reminded me of Mattie and if it weren't for Mattie, I would never have met Carolyn (as Carolyn's daughter and Mattie went to preschool together).

I would be lying if I said today was a happy and joyful day! It was actually a very emotionally challenging day. I can get very down and wonder why on earth I exist. All that being said, I can still be grateful for the countless friends who sent me cards, gifts, emails, and text messages!

Several of the wonderful gifts that came my way..... boxes of chocolates from Massachusetts (thank you Colleen and Helen!), and baked goods and gifts from my friend Ann. I think it is also noteworthy that I received a gift and card from my mother-in-law. Which meant a lot to me!

My friend Ilona came to the hospital today to visit with us. She brought beignets! My mom LOVES beignets and I have to admit I haven't tasted them in years! I can see why my mom loves them. They were amazing and my dad devoured two! Before Ilona walked into my dad's room, I was in a state. She helped to snap me out of that for a bit of time. Amazing how someone else's kindness and caring, can change the energy in a room. 

This special necklace came from my dear friend Cheryl. Cheryl has become one of those people who I reach out to when I am ready to jump off the ledge. Ironically we have NEVER met each other, but we are connected through my husband's side of the family. Cheryl had this beautiful necklace made for me! See the sunflower? When I opened this present, just seeing Mattie's name seemed like a gift! Mattie is integral to my existence and I am grateful for Cheryl and Mattie's blog readers who help me keep his amazing memory alive. 

Want to see Vicki as a child? Here I was with my mom! We were on a family trip in Cape Cod. I had to be maybe 8 years old. 

Me with my maternal grandmother. Her name was Anne, which is why this is my middle name. We were VERY close! I actually called her "mom," and my actual mom I called, "mommy."

This was the birthday cake my husband ordered for me, for my birthday party in 2019. I am not sure when it will sink in, but when someone is a part of your life for over thirty years, you come to expect that this person will always be there for you!

Tomorrow my dad gets discharged from the hospital. It was a difficult evening for him. As he is very confused, very disoriented and actually doesn't want to leave the hospital. He views the hospital as his home, and doesn't recall our actual home. In addition, he is convinced his brother is alive and he insists that the staff wheel him down the hallway to look for him. I have had to explain to the staff that my dad's brother died decades ago. After spending five hours at the hospital today, when I got home, my dad called me twice. Trust me that is a feat in and of itself, as he located my number and dialed the phone. My dad was in such a panic, that I had him call for the nurse and I asked him to put her on the phone. So I proceeded to tell her about my dad. After speaking with her, I had my dad take a piece of paper out and write the following....

I am in the hospital. 

Vicki is home safely. 

It is night time, and time to sleep. 

Vicki will take me home from the hospital tomorrow afternoon!

It is 11pm, I have finally finished all my chores for the day. I am wiped out, took Tylenol because every muscle aches, and I can't wait to put my birthday to bed. As in my heart there isn't much to celebrate.

Thursday, July 24, 2025

Thursday, July 24, 2025

Tonight's picture was taken in July of 2008. It was Christmas in July on our deck! Mattie had just been diagnosed with bone cancer and his request was to take out our Christmas displays. We used to decorate our commons area for Christmas. Mattie loved it, and each year, Mattie would pick out another light up decoration to add to the mix. Some of our reindeer were even automated and I can't tell you how many people in our complex used to tell me how our lights brightened up their holiday season. However, when Mattie was diagnosed, we kept all the lights on our deck and though we were all scared to death over Mattie's diagnosis, Christmas lights served as a positive distraction. I remember this moment in time and the sheer terror I felt, so much so, that I couldn't sleep or eat. 

Quote of the day: The simple act of caring is heroic. ~ Edward Albert

It was a very long day. I was at the hospital from 11am until 7pm. Today was a family meeting with the healthcare care and then training with my dad's physical therapist and occupational therapist. I have had several opportunities to participate in my dad's physical therapy sessions over the last ten days, therefore, I have been watching his progress and getting to know his PT. My dad's OT, I classify as a piece of work! This is a woman who never asked about the strategies we are implementing at home, or what we have tried in the past. Instead, she feels she knows my dad's abilities and strengths better than me and today's training day, was designed to show me how WRONG I am about his abilities. 

The occupational therapist has been working with my dad on dressing himself. Now don't get excited, my dad will never be able to dress himself independently. He is not cognitively equipped anymore to go into a closet pick out the clothes he needs, and then sequence the process to dress. In addition to that, my dad has trouble logistically putting clothes, socks and shoes on himself. However, she was dead set on showing me that if you give my dad an undershirt, he can pull it on, that he can find a way to thread his feet into pants, and with this sock assist gadget he can work on getting his socks on. Of course none of these activities can be done without verbal cues, a whole lot of time, and some assistance. I truly can appreciate what she is trying to do.... she is trying to give him independence to some degree. She is also trying to get him to use his body and brain. All great things. But here's the problem with all of this.... when she is working with my dad, he has gone from resting, to having a session. A session where the only thing he needs to focus on is her tasks, and then right after the session, he can rest again. WELL THE REAL WORLD DOESN'T OPERATE LIKE THIS! 

In the real world, my dad showers every morning, which is physically demanding and taxing. By the time he gets out of the shower, you would think he needs to go right back to bed. So giving him the task of dressing himself, would send him right over the edge. This is the nuisance that she can't appreciate. Not to mention the simple fact that with my dad's Alzheimer's simple tasks are not simple. Yet if I saw that my dad felt proud, happy, or satisfied with dressing himself today, then this would make me PAUSE. Then I would say, okay, I will find a way to get him to dress himself. But here's the thing! My dad not only did not find satisfaction in this task, but five minutes later, he did not even remember us working with the therapist, or any of the tasks he just completed! So from my opinion, these cognitive and psychological components need to be understood and evaluated! These are the things the therapist didn't consider. By the time this training session was over, I felt unappreciated for the intense role I play in my dad's life, not valued for my insights as I have over 4 years of daily experience with my dad, and most of all I felt that this young woman had NO meaningful understanding for the juggling act myself and other family caregivers perform each day. 

When my parents were living in Los Angeles, and my dad was functioning better than he is now, his caregivers couldn't get my dad to cooperate and help himself put on his clothes and shoes. As I told this therapist today, my dad maybe compliant with her, but dynamics at home are naturally different. Again, this was a fact that seemed to be lost on her. 

Once I arrived back home at 7:40pm, I started my chores of laundry, doing things around the house, and assembling my dad's bedrail. This is the second bedrail I have purchased. The first one I returned. This one was a lot easier to assemble and it seems to work. Nonetheless until I use it with my dad, I won't know if I am keeping it or sending it back. 

In addition, I processed through the mail and I found that the hospital responded to my grievance complaint. A lack luster and legalese response! Clever how they view my dad's visit to the ER on July 9 and then on July 11 as two separate incidences, and not related to the other! It makes it easier that way, because then they do not need to take culpability for his fall on July 11. My dad was discharged from the ER on July 10, and deemed to have nothing wrong with him. Despite my protest! But my dad had an upper respiratory virus that knocked him out and therefore instead of being in the hospital where he belonged, he was sent home, and in his weakened condition, he fell 24 hours after being discharged from the ER. Which prompted the need for an ambulance, another ER visit, and then admission to the hospital on July 11. My dad will be discharged from the hospital on July 26, so as you can see, it was a two week admission, which could have been cut in half if he was admitted to the hospital in the first place. I am sick of hearing about Medicare's requirements for a hospital admission! All I know is they followed Medicare's requirements on July 9, then my dad fell, and now Medicare is paying for a two week admission instead of hospitalization for a few days. Seems to me the requirements need an overhaul. 

Wednesday, July 23, 2025

Wednesday, July 23, 2025

Tonight's picture was taken on July 23, 2008. I know some of you may be quite familiar with this picture since I have posted it before. We were basically shell shocked on that day, the day we learned that Mattie had osteosarcoma. I took Mattie to the pediatrician on July 23, 2008, because he was complaining that his right arm hurt from tennis camp. His range of motion was affected, and he couldn't lift his arm up over his head. I assumed he injured himself in camp. I realized it was somewhat significant because of the pain and his limited mobility, but I had no idea the x-ray was going to show a huge tumor in Mattie's right arm. Though Mattie did not understand the significance of the diagnosis, he knew something was VERY wrong! That evening of his diagnosis, he requested Christmas lights! When your child has cancer and he wants to see Christmas lights in July, guess what? You do it! I will never forget this exact moment in time. It is etched in my mind and heart. 

Quote of the day: The shattering of a heart when being broken is the loudest quiet ever. ~ Carroll Bryant

Today marks the 17th anniversary of Mattie's diagnosis day. I honestly did not think this day could get any harder, but not having my spouse along side me, sharing this journey makes the impossible ten times more heartbreaking. My dad is still in the hospital and this is the same hospital Mattie was born at and also the same hospital where Mattie's cancer was diagnosed. So it is truly a surreal experience being on that hospital campus today. I will never forget the chain of events that day that led to a cancer diagnosis.

In July of 2008, Mattie was enrolled in a tennis camp. A week into the camp, Mattie complained of arm pain. We figured he sprained something or had a sore muscle from holding the tennis racket. A likely possibility given Mattie had never played tennis before.

While enrolled in camp, I attended a conference in San Diego. Each night while I was away, I checked in with my husband and I continued to hear that Mattie's arm pain wasn't getting better. I did not like what I was hearing! Before leaving San Diego, I made a doctor's appointment to take Mattie in the day after I landed back home.

Fortunately, Mattie's pediatrician took my complaints seriously (as she learned from experience with me that if I am flagging something, it should be taken seriously), as I told her the issue had been going on for two weeks, with no improvement. So the doctor ordered x-rays just to make certain she wasn't missing anything. Keep in mind Mattie had NO OTHER symptoms!!! From the doctor's office, we walked over to the hospital for x-rays. I admit that I got very frustrated with the radiology tech, because what I deemed should have been an easy x-ray process turned into an hour-long fiasco.

After the x-rays were taken, the tech told me to go to a waiting room. I will NEVER forget this waiting room. Mattie and I walked into a room filled with adults. NO hospital representative was in the room, only patients and ONE phone. We sat down and within five minutes the phone rang. NO ONE went to answer the phone, it just kept on ringing. So, I decided to pick it up. 

On the other end of the phone line was the radiologist, who asked for Mattie Brown's mom. When I told him I was Mattie's mom, he then said I needed to go right back to the pediatrician's office. I said, ABSOLUTELY NOT! I wasn't leaving that room until he told me what he saw on those x-rays. He did not want to tell me, but I forced it out of him. So I heard that Mattie had osteosarcoma over the phone, surrounded by a group of strangers and Mattie staring at me. I tried not to sound alarmed but it's a bit hard after hearing...... your child has cancer.

July 23, 2008, was my first experience with medical trauma, and unfortunately that was just one of many traumas we experienced as a family. Mattie's treatment was intense, we practically lived within a hospital room for 14 months, and each day was a crisis of some sort. I was constantly facing life and death decisions for Mattie and also witnessed Mattie experiencing clinical depression, anxiety, and medical traumatic stress. I am not sure how I survived seeing this happening to my six year old, but what I do know is I found courage and strength in the inner most places to manage the impossible. Why? Easy.... a mother's love. A love that continues to guide me today, a love that can't be tarnished, destroyed, or ever forgotten. 

The traumas associated with Mattie's diagnosis and treatment remain with me forever, which is why July 23, will be a day that still makes my heart flutter. What would have happened if Mattie survived his diagnosis? I have no doubt he would have gone on to accomplish great things and I also know my life (present and future) would have looked completely different.   

I end tonight's posting with the "Remember Me" video I created for Mattie's celebration of life ceremony in 2009. The song in the video, to this day, still gets me. I hear it and I can't help crying! The song was given to me by Mattie's preschool director. She knew the artist who wrote the song! It is hauntingly beautiful. This video captures Mattie's amazing life and the seven years I was lucky enough to be his mom. NEVER FORGOTTEN, ALWAYS LOVED, and FOREVER MISSED.

Tuesday, July 22, 2025

Tuesday, July 22, 2025 -- Mattie died 804 weeks ago today.

Tonight's picture was taken in July of 2005. Mattie was three years old! That week, we went on vacation to the Outer Banks. On our way to the Island, we always stopped at Morris Farms. I loved all the fresh fruits and vegetables and of course Farmer Brown went right for the tractor!

Quote of the day: There is no greater agony than bearing an untold story inside you. ~ Maya Angelou

We spent over 5 hours at the hospital today. Every time I enter my dad's room, I get upset! I am upset because of the mess and disarray all over the room. Alcohol wipe packets on the floor, debris of all kinds, linens strewn all over the place, my dad's dirty laundry in piles, the bed a mess, and my dad's wheelchair pad was covered in urine. Once I settled my mom, I began cleaning! This is my daily routine. I straighten everything, make his bed, pick up dirty linens, and cavi wipe all surfaces. By the time I am finished, you can smell that the room is clean. I am naturally a type A person, but in a hospital setting, it is crucial to manage germs!

Today my dad was convinced we were on a cruise! He kept asking.... what is our next activity! It takes a lot to orient him to time, place, and person. It is not just a one time task, but something I do constantly throughout the time I am visiting him. Each night, my dad doesn't want to get back into bed. Why? Because he is ready to come home! I have to remind him why he is in the hospital, because he doesn't remember his fall, he doesn't remember the six paramedics in our home carrying him down the stairs, and he doesn't remember running a fever and having a terrible cough and congestion! 

My dad's nursing assistant told me tonight that I am ready to get a job at the hospital, because he has observed the various things I can do! I told him that I am not trained formally to do this, but learned by experience. Before I left the hospital tonight, I washed and cut my dad's hair, shaved him, and brushed his teeth. 

Now on an aside. What is my therapy? It is either gardening or watching Hallmark movies. In July, Hallmark hosts... Christmas in July! They play Christmas movies the whole month. Last night, I saw Once Upon a Christmas Miracle. It is based on a true story, which in my opinion always makes a movie even more powerful. 

In this photo are the real life people, Heather and Chris Dempsey, who are portrayed in the movie. Heather had a rare liver disease, stage 4, and needed a transplant. A perfect stranger rose to the occasion to become her donor and in the process, they fell in love. It is a charming and heart warming story. It takes incredible selflessness and compassion to be an organ donor, and when I feel distraught, or have lost faith in humanity, Heather and Chris' story, reminded me last night that we have the capacity to make a difference in each other's lives. 

Liver Donor Marries the Woman Whose Life He Saved: 'It Was the Best Decision I Ever Made'

As I face tomorrow, July 23, the 17th anniversary of Mattie's diagnosis, I can't help but reflect on how our lives dramatically changed that day. In fact, the hospital where my dad is receiving care is the SAME hospital where Mattie was diagnosed. Childhood cancer taught me that life can change in a second/minute, and so much about our life is out of our control. July 23 is a day I will never forget and now I share this memory and heartache alone.  

Monday, July 21, 2025

Monday, July 21, 2025

Tonight's picture was taken in July of 2005. Mattie was three years old and this was his third trip to the Outer Banks of North Carolina. By that time, Mattie loved the beach! Not because of the ocean, but he loved creating and building in the sand and of course collecting! Mattie was a collector of all things found in nature, so shells were right up his alley. 

Quote of the day: Smile, though your heart is aching. Smile, even though it’s breaking. When there are clouds in the sky, you’ll get by if you smile through your pain and sorrow. Smile and maybe tomorrow, you’ll see the sun come shining through for you. ~ Charlie Chaplin

This morning, before going to the hospital, I decided to sit outside on the patio for 15 minutes. While out there, I had many hummingbird sightings. These little winged creatures are absolutely remarkable to watch, and I have read that the same hummingbirds (and their progeny) return to your garden each year. I know this to be true, because in March of this year, I had hummingbirds coming to my porch, to the exact location I typically hang the sugar water. However, there were NO jars up at that time, yet they clearly remembered where I hang them! 

Of course if I am outside, my kitty side kick wants to be there too! So out came Indie. She loves the bird watching and sniffing the breezes! Seeing greenery, watching the birds, and being in my garden are about the only things now that give me peace.

I got to the hospital around 1:30pm. When I arrived, someone came in to post tomorrow's therapy schedule on the cork board. This woman then proceeded to tell me that my dad was done for the day. Again, I said.... what about his 2:30pm physical therapy session? She said it was moved to earlier in the day. That was when I got upset. So I decided to talk to the rehabilitation coordinator. Any one who knows anything about hospitals, knows there are NO PRIVATE conversations. Forget HIPAA! I learned that early on with Mattie, so truthfully when I am talking I do not care who hears me, I am going to get my point across if it is about the care provided to my loved on. This unit is learning quick.... that I am a Type A, that I come daily, that I will hold them accountable, and that ultimately I want what's in my dad's best interest. One of the aides today commented to me that my dad's hospital room always looks so neat and clean! You got it, I remove all medical debris (stuff falls constantly), I fold towels and linens dumped in the room, I Cavi wipe down all surfaces daily, and the list goes on!

Any case, I explained to the rehab coordinator that I am not happy with my dad's therapy schedule which changes daily. Particularly because they are consolidating all the treatment in the morning, leaving him chair bound from noon until 7pm. To me lack of movement for someone my dad's age is the kiss of death. So I acknowledged that schedules have to be changed to juggle other patients, but what could they do to get my dad up in the afternoon to walk the hallways? Keep in mind I am not allowed to move my dad on my own! The answer was they were going to put it in my dad's chart that his nurse should walk with him every afternoon! I can't tell you how hysterical that is because the nurses hardly have the time to manage their own tasks with multiple patients, so where they are supposed to find the time to walk my dad, is beyond me. My dad's nurse apparently did not like all the various concerns I brought up to the coordinator (because remember we were in the hallway), that she never returned to our room again, and instead we were assigned another nurse. This surprised me because I am always pro-nurse, I never experienced a nurse who did not want to work with me!

The other issue I had to address today was my dad's pain meds. He hasn't been receiving his dosages every six hours. My dad's PT requested this to my dad's doctor two days ago and the orders were still not in the system. So my dad is in pain and this makes it harder to get him moving and working toward his goals. Thankfully this issue was resolved today. I wish it wasn't this way, but in a hospital system, the family making the most noise, gets the attention!

I was able to observe my dad in his physical therapy session today. The therapist told me that earlier in the day, she got him up a flight of stairs, rested a few minutes, and then came back down the flight of stairs. I think she was surprised he could do this! I knew my dad could do it! He is actually stronger than he looks and given that I have him moving daily and getting four sessions of physical therapy a week at home, I know what he can and can't do! He couldn't move initially when hospitalized because he fell on his back, and was in pain. So today, I saw a glimpse of hope in his rehab story..... as he can walk, he can get in and out of bed with support, he is doing stairs, and with a lot of assistance he can get out of a chair. There are still things to work on, but I am seeing progress. 

Later in the day, my friend Ilona came to visit. We are both moms who lost are only children to cancer. We share this profound nightmare, and it has bonded us together. Ilona wanted to bring me something for my birthday this week. I love tea cookies, and they aren't easy to find in my area! When my dad saw them, he immediately wanted a cookie or two. When I tasted them, they reminded me of cookies my grandmother used to make. 

Ilona perked up our day, and for that we are grateful! What we endure each day, has worn us down physically and emotionally, and it helps to have people around us who get it!