November 2, 2025

Sunday, November 2, 2025

Tonight's picture was taken in November of 2007. That weekend we went for a walk on Roosevelt Island. A park we visited practically every weekend regardless of the weather. Mattie just loved it and it was a little bit of green paradise minutes from our home in the city. It is hard to believe that less than a year later, Mattie was diagnosed with cancer. 

Quote of the day: FEAR has two meanings: Forget Everything And Run. Face Everything And Rise. ~ Zig Ziglar

Happy 16th birthday to Mattie Miracle! It is hard to believe that I have been doing this work for all these years! Longer than I had Mattie in my life. A sobering reality. As I always say........... the Foundation is my second baby, in memory of my first baby!

Tonight's quote truly speaks to me! When I became separated in 2023, I lived in constant FEAR! I truly did not know how I was going to survive caregiving alone, managing all the finances, dealing with house and car maintenance and everything else. When I tell you I was frightened, scared, and very anxious, I am not kidding. In fact there aren't enough words in the English language to describe the panic that overcame me, and almost swept me away. What was I going to do with all that fear? I would have loved to run, but that wasn't an option as my parents need my support 24/7. So the only thing I could do was FACE my fears. 

Two years later, I still haven't gotten used to be doing everything alone. I have weekly and sometimes daily panics. Over the last week, I noticed our front yard lights were out! These outdoor lights drive me 100% batty! I tried everything I could think of to make them work, and then I realized.... it has to be the transformer supplying electricity to the lights. Now I could have waited for Steve (my outdoor guru) who is coming in about a week to deal with sprinklers, to also address the transformer. But once a problem pops into my head, I don't let it go. I was determined to change this transformer myself. I have seen it changed once before, so I knew it wasn't difficult. But doing anything on my own now, produces fear. This morning I overcame that fear. I pulled out the new transformer I had on hand, got out a screwdriver, and went at it! Guess what? I did it and the lights out front are now working. Before I threw away the old transformer, I removed its light sensor. Why? Because I have another transformer whose light sensor no longer works. So when it gets dark out, the transformer no longer automatically turns the lights on. I decided to take the light sensor from the old transformer and install it in the transformer on my driveway! I wanted to see if it would work tonight! Sure enough, I have LIGHT everywhere! 

This is my dining room now! When you look at it, you would never know that I had a 3x3 foot hole in it after the bathroom flood. My hope is the bathroom renovation will be completed this week too, as juggling this is practically way too much for me. 

Saturday, November 1, 2025

Saturday, November 1, 2025

Tonight's picture was taken in October of 2008. Mattie was recovering from his first limb salvaging surgery. The whole thing was traumatic, particularly managing the pain. That day, we got Mattie up and in his wheelchair. But it wasn't just any day! It was a Friday! Sitting next to Mattie was Chris, the president of the chemistry club, who came to the pediatric units every Friday! I will never these visits. Mattie loved Chris' activities and when Mattie was too sick to go out into the hallways, the chemistry club came right into Mattie's room! That day they were making slime together. I am NOT AT ALL surprised that Chris is now a physician!

Quote of the day: But when they were walking in the gardens one of them, or perhaps both, began a sentence with 'Do you remember...', that powerful insidious phrase which can upset the most carefully formal conversation. ~ Barbara Pym

Tonight's quote is quite poignant. I have a lot of "do you remember" moments. However, throughout my married life, I never shared any of these moments alone. As hard it was to lose Mattie, when I was married, we shared joint memories. Life before Mattie, life with Mattie, Mattie with cancer, Mattie's death and our journey with this forever loss. Joint moments from our many decades together and I always knew our memories were stronger together. It is harder carrying the baton on my own and frankly I do not think human beings were programmed to be alone. Or at least I wasn't, which is why I got married at the age of 24. In so many ways, I can't remember my life as a single person, and now that I am forced to face this reality, I hate every minute of it. 

This afternoon, I took my parent's out to the local restaurant we visit every Saturday. I have gotten to know the manager of this restaurant and today we were chatting about the complexities of people today. In fact, she is the third person this week who discussed this very topic with me! The challenge they mentioned to me is selfishness, of people being self absorbed, and solely focused on their best interest with no regard for others around them. In each conversation I had this week, the culprit we all focused on was the internet. The internet is wonderful and awful at the same time. We have become a species which prefers interacting with things rather than people. Case in point... look at Halloween.

When I was a child and this applies to Mattie's generation too, Halloween was a time when you walked door to door, rang the bell, and the homeowner would greet you, comment on your costume and then give you candy or other treats. If you still do this...... answer your door and hand out candy..... all I can say is amazing! Good for you! It is a lost art. Because for the most part now people leave candy out in a box or bin by their front doors. Or some people even mentioned to me that they shut their lights off altogether and they do not give anything. 

Somehow we lost the compassion, focus, and pride for caring about other people around us. All I know is this is not a topic I can relate to, as throughout my life, everyone else around me was always number one, and I came second. This is not a complaint, it is just who I am, and I am saddened that we live in a culture where turning inward is rewarded and has become the norm. Why.... because, I think the most memorable moments, the ones that bring us long term happiness, are those moments shared, united together for a greater good.  

Friday, October 31, 2025

Friday, October 31, 2025

Tonight's picture was taken on Halloween of 2008. Our last Halloween with Mattie. Pictured with Mattie is Zachary, Mattie's best preschool friend. These two boys were inseparable in preschool, starting on Day 1 of school! Halloween 2008, Mattie did trick or treating in the hospital by day, and continued the fun in the evening with Zachary. I will never forget this evening, because it was on that night that I learned what true friendship looks like! Mattie and Zachary went trick or treating with a few of Zachary's neighbors. Clearly they were all active and able bodied fellows. But Mattie just had his first limb salvaging surgery and he was anxious and fearful about injuring his right arm which was casted. So Mattie moved slower. He did not want to run from door to door. The other children in the group were encouraging Zachary to ditch Mattie, so that they could move faster and collect more candy. After all they were 6! It would have been understandable if Zachary wanted to stay with the group! But that was NOT what happened. Zachary told the others to go ahead, because he was staying with his friend, Mattie. I will never forget that beautiful decision. As Mattie was already feeling different, and losing his friend Zachary that night would have been traumatic. Once the boys finished trick or treating, we went back to Zachary's house and Mattie began sorting candy! A favorite past time of his, mainly because Mattie did not like candy! But he enjoyed categorizing and sorting, not to mention trading his chocolate candies for lollipops. 

Quote of the day: The past is always with you, whether you choose to think about it or not, whether you take responsibility for it or not. You carry the past with you because it transforms you. You can try to bury it and pretend it never happened, but that doesn’t work. ~ Jennifer Hillier

I woke up this morning and received this adorable Halloween video from my friend, Phyllis, in California. I don't know about you, but I thought it was adorable. May we all age with grace and never lose wit and a sense of humor! 

I remember Halloween of 2024, as if it were yesterday. Why? Because it was on that day that I learned I was officially divorced. Seems fitting, to get divorced on Halloween, doesn't it? I was in such a state that I wasn't sure how I was going to make it to the day. But it was a warm 70 degree Halloween evening. So in 2024, I had the front door open, brought a chair over for my mom to sit, and she and I greeted every trick or treater! I met some of the nicest kids and those interactions helped me in two ways.... first it helped to take my mind off of deep emotional pain, and second, going through the motions enabled me to see that I wasn't going to collapse or drown in a pool of tears like Alice in Wonderland. 

Today, was more of the same! Busy! The contractors were back and as of tonight, the dining room ceiling is fully repaired and painted. One room down. Progress is being made in the bathroom, and the good news is this will be finished next week. Which is great, because I do not think I can keep this pace up, with my 6am morning starts!

After I dropped my dad off at his memory care center this morning, I went grocery shopping. As I entered the store, Eric Carmen's 1976 song, Never Gonna Fall in Love Again, was playing. If you have no idea what I am talking about, listen to it for yourself......................

On an aside, it is NOT unusual for stores and restaurants to play songs from the 1970s and 1980s! It is no surprise to me, as these decades produced some of the best music to sing and to dance to. But hearing these songs transport me back in time. The power of music. Back to happier times actually, when I truly did not understand the real meaning and pain associated with this song. In the 70s and 80s, I was a happier person, who thought I had a wonderful future ahead of me. So as I walked into the grocery store today and heard this song, my initial reaction was happiness to hear a 70s song, but then I started listening to the lyrics. I do not believe in coincidences. I was meant to hear this song today, because on the one year anniversary of my divorce, it captures the feelings within my heart.

Thursday, October 30, 2025

Thursday, October 30, 2025

Tonight's picture was taken on Halloween of 2008. We spent the day at the hospital, enjoying games, activities, and trick or treating around the administrative offices. Mattie's child life intern snapped this photo of us together. Mattie did not want to go to this party at the hospital in costume if I wasn't dressed up too! So I was a cat! On an aside, do you see the purse behind Mattie on a shelf? That was my purse. If you know me, then you know I am a typical New Yorker.... my purse is glued to me. However, the year we were living at the hospital, I would put my purse down in Mattie's room and leave it there unattended. Same in the playroom. I am not sure why I did this, as it was completely out of character. The only conclusion I can come to was the hospital was like our home. In fact, we lived in it more that year than our actual home. So just like when I am home, I don't guard my purse, and it translated to how I felt about the hospital. That may not be earth shattering, but it actually was very revealing of my state of mind at the time. 

Quote of the day: Memories are strange things. Without being something I can hold in my hand, they wield a beguiling power over me. Like a mirage in the noontime heat of summer, they dance before my inner eyes and beckon me to find water where there is not water. ~  Joy Sikorski

Life is just so complicated with my usual routine and having contractors over. They are the nicest men, but whenever my day is altered in some way, it makes me edgy. I am also very tired, as I am getting up even earlier than usual to get things ready before they come over at 8:30am. Below are three photos of the bathroom I am renovating. It is being renovated only because my mom flooded it this summer. 

The photo on the far left is what the bathroom looked like when we bought the house in 2021. Before my parents moved in, we changed the color of the bathroom and painted it ourselves. We also changed the vanity. You can see those changes in the middle photo. The photo on the right was what the bathroom looked like in August, after the vanity, part of the bathroom wall, and floor were removed. 

This was what the bathroom looks like as of today! The tiles were laid on the floor. The grout will be placed on the tiles tomorrow. Typically the grout color used is a grey color. I am not a grey person, so I have selected a very very light gray, that almost looks white! I can't tell you how these bright tiles have opened up the bathroom. I struggled picking out tiles, but Alfredo agrees.... this was the right one. It is the kind of tile that anyone would like, because you can decorate with whatever colors you wish to make the bathroom pop! I have to see what kind of wall space I have after it is all said and done. But I have watercolor sketches of our home that a local artist created. This was part of the series we were working on for the family room, which I abandoned. Any case, I would love to take a few of the landscape sketches and either frame them or make them into a canvas for this space. 

In August, it looked like it was raining in the dining room. The water was coming from my mom's bathroom above this space. The hole is now gone! Tomorrow the ceiling gets painted and then the dining room will be done! 

Meanwhile, I am so grateful, more and more boxes are being delivered for the Foundation's item drive. We have the best supporters and friends. 

Wednesday, October 29, 2025

Wednesday, October 29, 2025

Tonight's picture was taken on Halloween of 2008. This was Mattie's last Halloween with us. Mattie picked out this costume in the oncology clinic. I will never forget the day he picked out this costume. His art therapists invited him to the clinic and into the costume room, without any other children present. They did this because they knew Mattie was very anxious about his right arm that was bandaged from his limb salvaging surgery. If Mattie was in a room with other kids, who were running around and picking out costumes, I think he would have been very fearful and most likely would have left the room. But being in the costume room without the fear of getting bumped into or falling, enabled him to evaluate all the costumes. As soon as he saw this mummy costume, he knew it was the one for him. The costume covered his bald head and you really couldn't see that Mattie's arm was casted! He made the cutest mummy around and had a good time trick or treating at both the hospital and with his preschool friend in the evening!

Quote of the day: The heaviest archives we carry are not in libraries, but in our hearts—unwritten, unspoken, unforgettable. ~ Shahbaz Shaikh

This was day 2 of contractors. Truthful they are lovely men. They are respectful of what I am balancing, they make sure everything is cleaned up and not in my parent's way, and most importantly they do not get under foot! I am grateful for this, because I have enough going on inside my home. I suppose it is my mindset now, as I know I can't continue to live with a big hole in my dining room ceiling and a torn up bathroom. So I WANT IT DONE!

When we moved into the house in 2021, this was what the bathroom looked like. We did several things to modernize it before my mom used it, such as we replaced the vanity, the toilet, and repainted the bathroom an ivory color. My point to telling you this is that this bathroom, as been through the ringer. 

In July of 2025, my mom flooded this bathroom. The vanity, floor, and part of the wall had to be totally removed and remediated. 

In August of 2025, we had fans going for three days to dry up the water. 

This is what the space looks like currently. I had that big mirror removed, the ugly light fixture is now gone, and a new subfloor was laid and walls are being dry walled. It is wonderful to see the work taking place in stages! 

When the bathroom was flooded, it went right through the dining room ceiling. I have been living with a hole in the ceiling since July. 

Here is what the dining room looks like today. We are making progress!

While this is going on, I also have the Foundation's item drive in full force. I am so thankful for my four season room, as it acts as my staging area for all the generous donations we are receiving! These donations are crucial for our hospital carts, and personally they are vital because they keep Mattie's legacy alive. Which, as his mom, is my ultimate goal! 

Tuesday, October 28, 2025

Tuesday, October 28, 2025 -- Mattie died 818 weeks ago today.

Tonight's picture was taken on Halloween of 2007. That was the first year we did not make Mattie's costume. Instead, we went to a party store and picked this one out! Mattie wanted to be a Air Force pilot. I think Mattie was inspired after going to the Andrews Air Force Base to see the Thunderbirds air show. When we picked out the costume, it had Army patches on it. But keep in mind, Mattie was adamant about it being an Air Force pilot. Since one of my former students was a retired Air Force Lt. Colonel, she was able to send me some Air Force patches. Together, Mattie and I attached those patches to the uniform. Meanwhile, our neighbors in the city got Mattie the hat and sunglasses! He was all decked out and that year participated in his school's Halloween parade and of course went trick or treating with friends in the evening. It is hard to believe that the following Halloween, Mattie was dealing with cancer. 

Quote of the day: Because memories cannot be erased, but we treasure them and they remain imprinted in our memory and marked with black ink on the white paper of a book. ~ Elena Ragazzoni

I did not get to sleep last night until around 1am and I got up at 5:45am. It is ironic that I once was a person who hated the mornings, and did not like getting up early. I can't say I love it now, but I am used to it! When I tell you it was a three ring circus today in my house, I am not kidding. Blanca, the lovely woman who has helped me clean my home since Mattie was diagnosed with cancer, came over today. In the past, I would have Blanca come over every two weeks. Now, I am just juggling too much, and I am lucky if I have here her once a month. Blanca's mother recently died and we chatted about that this morning, as she knows I am no stranger to loss. 

When Mattie died, his preschool teacher, gave me my first angel. Since that point, my angel collection has grown. I have been gifted each one of these angels from friends and students! They mean the world to me and each one is symbolic of something special! Today, I started Blanca on her own angel collection. I gave her an angel with a red cardinal sitting on her shoulder. I wanted to remind Blanca that the cardinal is symbolic of her mom. Whenever she sees one of these beautiful birds out in nature, it is sending her a message from her mom. That her mom is watching over her.  

It is very challenging having my dad home while Blanca is over, because I literally have to move my parents from one place to another in order to get them out of her way. In addition to Blanca, the contractors came over today to start the bathroom renovation. As a reminder, my mom flooded the bathroom in August, and it was a process of filing a home owner's insurance claim, getting the water remediated and cleaned out, and now of course the last stage. I have worked with this contractor in the spring, to fix the decaying portico over my front door. He was referred to me by my neighbors. In fact, he has worked long-term for many of my neighbors. Try over 15 years with some of them. He is a lovely, kind, and competent professional. He is very cognizant of my parents and is making sure nothing is lying around on the floor that they could trip over and is closing off and sealing certain locations in the house so their lungs aren't as impacted by fumes and dust. 

To add to the mix, my dad's nurse visited today to do a wound check. In the midst of juggling all of this, the contractor evaluated all the products I bought for the bathroom. At first he was concerned that the vanity mirror I purchased was too big and wouldn't fit in the space, but once he opened the box, he said I was right, it is the perfect dimension! One for Vicki! 

As the Foundation's newsletter went out this week with our Amazon Wish List, I received a flurry of boxes today. This was one shipment! 

Another shipment came in later in the day. Needless to say, there was so much chaos in the house that I took my parents out to get something to eat. As my grandmother used to say...... the kitchen is closed! Meaning, I wasn't cooking dinner today.

Monday, October 27, 2025

Monday, October 27, 2025

Tonight's picture was taken on Halloween of 2006. Mattie was four years old and that year he finally got to wear his calico cat costume that we created together in 2005 (In 2005, Mattie was hospitalized with sepsis from an ear infection and was unable to wear the costume.). Mattie was the cutest cat and had a wonderful time dressed up in his costume at preschool and then of course going trick or treating with friends. 

Quote of the day: Unhappiness is caused when we cannot let go of our memories. ~ Jed Rubenfeld

Just when I think my days can't get worse, they do! This morning, my mom had her physical therapy session at home. Getting her downstairs in time for this appointment isn't easy, and of course while herding her, I am also balancing my dad's morning routine. When her therapist arrived, I got my dad to the car and to his memory care center. I then drove to a board member's house, so she could sign a Foundation document that I had to get in the mail this week. So that was 40 minutes of driving. I then hurried back home, because Paul, my HVAC person, was coming over to address the lack of heat on the first floor. It has been very cold inside, so much so that my nose and hands have been frozen while at home. Needless to say this temperature is NOT good for my parents. 

Paul was with us for two hours! Thankfully this wasn't a furnace issue, but a gas pressure issue, which impacted how much forced air was going through to the vents. Prior to Paul adjusting it today, it was set very low. So low that it made no measurable difference inside the house. I wasn't sure how this was possible, but then Paul reminded me that he only started working with me in April of 2025. Paul is kind, thorough, competent, and YES I have his cell phone number. I literally text messaged him on Saturday and he worked with his company to get me on the schedule today, which I am grateful for!

Once Paul was gone, my mom wanted to go out. The time I could spend on catching up on things around the house, never happens, because I am always juggling one of my parent's needs or issues. Later in the day, after getting my parents settled, I started doing things around the house. I started at 4:30pm, and did not stop until 7:30pm. The problem with that is at 7:30pm, I had two very hungry parents, so I scrambled to make dinner. But I was determined this afternoon to cut back our big hydrangea bush and then try to figure out how to get our water sensors in the house working. We have a sensor in three locations (under the kitchen sink, under the washing machine, and under the water heater), and the sensors are designed to warn me if anything is leaking and could cause a flood. For two years now these sensors have not been working. My plumber tried to re-install them for me, but again, they weren't working. If I paid for something, I expect it to work! 

I was determined to get these sensors working! Honestly they connect to wi-fi but they do not connect easily! You should have seen me holding the sensors up to the router in our house and waiting minutes for them to connect. Out of the three sensors, I got two up and operational, after an hour of labor. Tomorrow, I will address #3! What I have learned through this painful life lesson is that I have to be fully operational on my own. But I live with constant and chronic stress.

While I was cleaning the dinner dishes, my mom apparently had grabbed my phone, thinking it was hers. I have no idea how she accomplished this within minutes, but she shut down every opened and saved search page I had! Some of these pages I had open were of sentimental value. I am very tired and worn out, and literally this was the last straw tonight! My mom refuses to understand that she has her own issues, but once again I learned another lesson...... my phone can not be in her reach, as my phone truly manages my life and everything in this house!

Sunday, October 26, 2025

Sunday, October 26, 2025

Tonight's picture was taken in October of 2005. Mattie was 3 years old. That year we made his costume together! He wanted to be a calico cat, like our cat Patches. So we bought a black sweatsuit and felt fabric. We cut out patches of felt and then Mattie hot glued them onto the sweatsuit. Mattie was a champ with a glue gun. He was the one who taught me how to use it! I then got a pair of black tights for the tail and we glued patches of felt onto it. As you can see Mattie was proud of the finished product. However, Mattie never got to wear this costume in 2005, because he developed an ear infection which turned into sepsis. He literally took Mattie to the emergency room and he was so sick, that he was admitted, and missed Halloween. Mind you I had taken Mattie the day before his ER visit to the pediatrician and I told her I thought Mattie had an ear infection. She thought I was an over anxious mom, and dismissed us! Guess who was correct? Any case, when Mattie was admitted to the hospital, this same pediatrician came to visit Mattie and she literally apologized to me! Needless to say, moving forward, she never doubted me when I said there was a problem! As I always say NO ONE KNOWS THE CHILD BETTER THAN THE PARENT.

Quote of the day: A tormented mind wants to forget, what a broken heart will always remember. ~ Anthony Liccione

Today, I tried to take a deep breath and regroup. I am balancing so much, that some times I can feel my level of stress and anxiety, with my heart feeling like it is beating so fast and fluttering. I am no stranger to this feeling. Soon after Mattie died, I experienced my first real bout of clinical anxiety and panic attacks. Of course at the time, I had no idea what was happening to me. I assumed it was my heart. After enduring stress tests and wearing a heart monitor for a week, I learned that my problem was NOT physical. Of course that was wonderful news, but then what???? How could I manage these intense feelings and control them so they did not overtake my life? Certainly I could have taken medication or did talk therapy, but I didn't! Instead, I started a walking routine back then. Some days I was walking ten miles. When that feeling of panic would arise, I would pop on my sneakers, and outside I would go, regardless of the weather. While walking, I would do a lot of self talk. Talk that would rationalize in my head what I was experiencing, and reminding myself that nothing was physically wrong with me. Instead, I needed to understand the incredible trauma I had endured and the incredible grief I was facing. Within a matter of weeks, my walking and internally talking routine worked. To this day, when a panic attack comes on, I know the feeling, and I also know I have the STRENGTH and DETERMINATION to work through it without needing to walk! But it took a lot of time and work on my part to achieve this coping strategy.

This morning, my mom was observing what I was juggling with my dad. She was besides herself watching me clean up the bathroom after one of my dad's irritable bowel episodes. What once was a weekly occurrence, has now become a daily one with my dad. Sometimes multiple times a day. This type of issue makes my mom upset and anxious. Fortunately, I can handle all of this without skipping a beat. I just prepare myself that these issues will happen, and therefore I do not get anxious. Now that doesn't mean I like them, or that at times I do not get angry that this is the full extent of my life, but none of this triggers anxiety for me. Keeping my dad clean is a full time job in and of itself, because with his multiple skin issues, he can easily develop sores. I want to avoid sores, infections, and potential hospitalizations. 

Which was why, as I started today's blog.... I took a deep breath. I did take my parents out for brunch and while out I received a lovely phone call, where I was told I was LOVED. That phone call brought a smile to my face, because through all of this, those who know me, remind me how special I am, how devoted I am to those I love, and that I make a difference in people's lives. This call transformed my afternoon. 

Meanwhile, this week, I have to address a furnace NOT working (I assure you I am frozen inside the house!) and the contractor starts work on Tuesday to begin fixing the hole in my dining room ceiling from the summer bathroom flood, and then renovating the bathroom that was practically striped apart from water damage. It is hard enough juggling my parents, their needs, and schedule. So I know having the contractor here will add another layer of crazy to my existence. As I always say.... God give me the strength to face and survive each day. 

Saturday, October 25, 2025

Saturday, October 25, 2025

Tonight's picture was taken in October of 2004! Mattie's second Halloween! By that point in time, Mattie understood the notion of trick or treating a little better! I don't know about you, but to me Mattie was the cutest POOH around! I will never forget picking out this outfit together and snapping this photo. As I mentioned before, Mattie only liked going into three stores. So that year, we went shopping for an outfit and came across this adorable sweatsuit. The soft and cozy nature of the material got the Mattie seal of approval. But Mattie also loved Winnie the Pooh! I introduced Mattie to Pooh stories early on! On an aside when I went to college, I will never forget that in my freshman year our college president read us a story from Winnie the Pooh. He was Welsh and he recited the story with his wonderful accent. Pooh even had relevance in college. To this day, when I hear Winnie the Pooh, I get transported right back to college and raising Mattie. 

Quote of the day: Sometimes moments in life are so perfect you want to freeze frame them; capture them within your soul forever so they never fade away—they burn themselves into your being until they’re a part of who you are. ~ Cassandra Giovanni

Recently I was sent two books on Alzheimer's Disease. It is always interesting to receive a book on a topic you are living intimately with each day. After all, you don't look at the book with the same questions and interest as you would if you were trying to learn about a novel topic. It is also very interesting to read about the theoretical nature of a topic, versus having the lived experience. I think many books try to cover useful topics, resources, and even highlight insights from other caregivers. However, what so many of these books lack is pure honesty. Some issues, like caregiving do not have pretty solutions. What works for one person may definitely not work for the next caregiver or family. There should be a chapter of being stuck, for feeling like there is no end in sight, with a future that is bleak and the list goes on! This is the reality, and the reality needs to be normalized and confronted. 

I remember when I was doing my dissertation and interviewing countless caregivers of older family members.... they felt stuck. They were overwhelmed, they were exhausted, and they had FEW TO LITTLE OPTIONS. Many of them landed up crying as they were talking. I remember their quandaries, I remember their heartache and angst, and I remember leaving each interview literally saying a prayer for each of them....... that God walk with them and give them the strength to manage through another day. Now walking through my own caregiving journey (once again!), I have even greater empathy for the caregivers I interviewed almost two decades ago! 

What I did gleam from my reading last night is that I am performing heavy duty caregiving and that my dad is fast approaching the late stage of Alzheimer's. There are three stages to this disease: early, moderate, and late. 

When my dad was living in Los Angeles, I saw many more behavioral issues that are listed here. He would lash out, curse, be hostile, and irrational. All of that has dissipated and the one blessing for him being so sedentary, is that he doesn't have the inclination to get up and wander! 

My dad's doctor chatted with me on one particular occasion, when my mom was not present. He wanted to prepare me for the future when my dad will not be able to swallow or walk. As it is, my dad basically does not communicate now. He recognizes some people that he sees daily, but has no memory of them after about a minute. He needs full assistance with bathing, dressing, and personal care, he'd sleep the day away if I let him, and of course he is incontinent to bladder and bowel. 

But with late stage Alzheimer's, people can become very immunocompromised and easily get sick with viruses and pneumonia. So needless to say, I am forever vigilant. 

I typically take my parents out to a local restaurant every Saturday. But today our favorite server text messaged me and told me not to come. There were logistical kitchen issues, and he did not want my parents to be impacted. So I took them back to a restaurant we tried last week. I have to work harder at this particular restaurant, but we managed. For me, going out is a chance to interact with people and have more normal conversations. I missed that opportunity today. It is challenging eating with my parents as my mom is lost surfing the web on her phone and my dad is simply in a fog. It is hard not to let this sight emotionally get to me, wear me down, or get depressed. 

But I think I am TOO anxious these days to be sad. Today's nightmare is the first floor furnace isn't working. It is absolutely frigid in the house! I already contacted my HVAC person and I am hoping this will be an easy fix next week. I have wasted more time, energy, and money on these furnaces! Ironically I just had a heating inspection two weeks ago, to avoid such issues. So much for that!

Then I got a text message from my plumber today. He is leaving the company I have a service contract with, and for me, I am devastated. I have worked with him since 2021, and he knows me and this house quite well. I am sure this sounds fun.... how could I miss a connection with my plumber?! Well if you know me, then you know it is possible. I get very attached to people, especially people who are kind, capable, and dependable. Literally I had to take a deep breath today, and remind myself, that I will figure it out. But I am TIRED of having to figure everything out, of being divorced, and not having the support that I always thought would be present in my life. 

Friday, October 24, 2025

Friday, October 24, 2025

Tonight's picture was taken in October of 2003. Mattie was a year and a half old. Though Mattie did not quite understand the notion of Halloween yet, he and I went out to look for something holiday-ish! Mattie liked shopping in only three stores. So we went to one of them and I saw this cute pumpkin sweatsuit. Mattie gravitated to orange and pumpkins, so this was the perfect find. Mattie also did not like anything scratchy or tight, so this outfit was soft and cozy! Right up his alley!

Quote of the day: There is nothing so agonizing, or so dangerous, as a memory unexpressed, unexplored, unexplained, & unexploded. Grief is the grenade that always goes off. ~ Amanda Gorman

Never a dull moment at my house. I got up extra early today, because the nurse helping with my dad's pressure sore care came over at 9:30am, before I had to take my dad to his memory care program. When she arrived she took his blood pressure and heart rate, and at rest, my dad's heart rate was 103. Keep in mind that the normal range is 60-100 beats per minute at rest. This was the third time this week that this elevation occurred. While my dad was at his memory care program, the center contacted me to let me know that his heart rate at rest was 113bpm. So one elevated number, to me, would be a fluke, but three times made me pause. 

After the nurse left, I called my dad's cardiology office and spoke to a nurse. I explained the issues and she asked me to send data from my dad's pacemaker to the clinic! This is very easy, as I can do this from my phone! But then she suggested my dad may have a urinary tract infection and that he get a urine test. Sounds easy.... but doing this with my dad is anything but easy. First I would have to get a script for this, then I would have to take him to a testing center, and trying to catch urine with someone who has dementia and is incontinent is close to ridiculous. I told this nurse that I thought this test would be meaningless, because my dad has a huge kidney stone and if you assess his urine, it always gets flagged as having a problem. 

I found this call with this particular nurse frustrating, so I then contacted my dad's primary care provider. He agreed with me, that my dad most likely doesn't have a urinary tract infection, but the doctor was concerned by the elevated heart rate and said that someone needed to see my dad today to evaluate him for afib and arrythmia. So I called the cardiology office back and spoke to a second nurse. I told her what my dad's primary care doctor said and told her I needed an appointment today. She did comply and gave me a 2:30pm appointment. The location of the office she sent me to is my least favorite because parking is horrific! From past experience, I knew I had to take Mattie's wheelchair with me because there is no way to safely move my dad around at that complex. Truly getting my parents into the medical building and up to the office was taxing. I can't tell you how many strangers just come up to me out of the blue and tell me.... I am an angel and they literally are looking for my wings! This isn't a one time occurrence either. I say this because what I am balancing is overwhelming that even people just casually observing me.... GET IT!

Any case, after an EKG, an exam, and a discussion, my dad is fine. His pacemaker data revealed nothing alarming! I could have just ignored all the data presented to me this week about my dad's elevated heart rate, but I didn't! Because with my dad I never know if there is a serious medical concern or just a false alarm. I am thankful today was a false alarm, because the notion of spending more time in a hospital, running back and forth from home and advocating for his care, is beyond me right now. 

This is the highlight of my day! My neighbor brought me an apple pie! For no particular reason, other than.... just because. She is one of many people worried about my well-being, and we meet on occasion just to catch up.  

Thursday, October 23, 2025

Thursday, October 23, 2025

Tonight's picture was taken in October of 2002. This was Mattie's first Halloween. He was six months old. Though Mattie did not get dressed up for the occasion, I introduced him to a pumpkin! The pumpkin was as big as Mattie and his little hand started feeling the top of the pumpkin and checking it out. I always referred to Mattie's hands as little radar scopes! I just loved watching him take the world in!

Quote of the day: The world is shaped by two things — stories told and the memories they leave behind. ~ Vera Nazarian

My dad's physical therapist came over this morning. In order to keep my dad moving, he has four therapy sessions a week. Wouldn't it be wonderful if I could do the exercises with him? YES it would! But he is completely non-compliant with me. So in order to maintain his strength, balance, and endurance, I need the therapists! Because my dad has Alzheimer's, I can't appeal to his common sense, as he just doesn't understand why it is important to walk and be as independent as possible. It is actually very frustrating for me, because my dad does nothing for himself and has no interest in having any responsibility. By the time the therapist arrived, I had already survived three bouts of his irritable bowel issues. Literally by 11am, most days, I feel like I have run a marathon. 

My dad's therapist was talking about Halloween this morning. She has three small children and so far they have changed their minds about what they want to be for Halloween three times. We got a chuckle out of that! The conversation reminded me of my Halloweens with Mattie. 

I put together this photo of the 7 Halloweens I shared with Mattie. They went like this.......................................

• 2002 - no costume
• 2003 - a pumpkin
• 2004 - Winnie the Pooh
• 2005 - A Calico cat (Mattie was hospitalized with sepsis that year and never went trick of treating. So he wore this costume again the following year!)
• 2006 - A Calico cat
• 2007 - An Air Force Pilot
• 2008 - A Mummy

I truly never thought Mattie would be in my life for only 7 years! After all, how many children do you know who get cancer and die? Prior to Mattie getting cancer, I never met one child with cancer! But of course once Mattie was diagnosed, my mindset changed. I see childhood cancer everywhere. Those who don't have this lens, consider yourselves blessed and lucky. Childhood cancer changes everything about a family's life and existence. 

Memories are funny things. I know these 7 years were a part of my life, but they seem so long ago. As if they happened to another person. This is why I keep on writing! Writing forces me to remember details and it keeps them fresh in my mind, as I never want to FORGET any aspect of Mattie Brown. I miss that smile, his antics, his joy for life, and for making the mundane.... fascinating!

In addition to talking about costumes this morning, we also got into talking about favorite Halloween candy. The therapist asked my dad about candy and his response was.... I don't like candy! Not sure my apple came from his tree, as I am ALL ABOUT CANDY! Any case, did you know that Reese's, Snickers, and Kit Kats are the most popular Halloween candies on the market? Yes I can see why, but I will tell you my favorite, it is a Take Five! To me there is nothing like pretzels with chocolate and caramel! 

Though I may be all about candy, Mattie was NOT! In fact, if he went trick or treating with friends, they would sort candy after they collected it and Mattie would eagerly give away all his chocolate candies for lollipops and pretzels! Truly he always made me chuckle!!! 

Wednesday, October 22, 2025

Wednesday, October 22, 2025

Tonight's picture was taken on Halloween of 2008. Our last Halloween with Mattie. Mattie trick or treated at the hospital by day and then went to his friend, Zachary's house in the evening. Mattie decided to be a mummy that year. It was the perfect costume that covered up the fact that his right arm was casted. Pictured with Mattie was Sally the Story Lady! Sally was one of the volunteers Mattie absolutely loved. I mention this because there were only a handful of outsiders that Mattie let in and related to! Sally was one of them. Sally brought stories alive and there was always hands-on participation, which resonated with Mattie. I will never forget this dynamic duo!

Quote of the day: Nothing is more responsible for the good old days than a bad memory. ~ Franklin P. Adams

Mornings in my house are hard. Especially mornings when there are appointments. Today, my mom had a physical therapy session at 10am. However, I forgot to remind her last night and prep her for today. I remembered she had a session today at 7:30am. I literally went to my parents room to alert my mom about the session. She wasn't happy with me, but I have learned to brush these quips aside because I am juggling way too much! I no longer feel guilt, as I am one person juggling three people, a cat, a house.... and everything else!

Today my dad's memory care center was sending me emails about his blood pressure and pulse. Seriously...... what do you expect me to do about this? I corresponded with them all day, trying to figure out why his pulse was so elevated! Given my dad has a pacemaker, it keeps his pulse between 60-100 beats. So the fact that they got a reading of 113, made me suspect! But okay, another thing to keep track of! 

On a complete aside.....Did you know that trees communicate? Literally I came across this article today, How do trees communicate!? Scientists have discovered that there are an intricate network of hair-thin fungal filaments called mycorrhiza, which in many ways act like a telecommunications network. This network uses chemicals, hormones and even slow-pulsing electrical signals to communicate under ground. The communications can be about danger, pain, and in need of nutrients! 

Toward the end of the article, it mentioned that trees are "reluctant to abandon their dead, especially when it’s a big, old, revered matriarch. This suggests that Mother Trees are highly valued in forest societies, and are remembered long after they've gone." This to me speaks to the power of grief and loss. It is not just a human concept. It is a universal feeling that is experienced by any and all living things. Certainly the symptoms of grief and loss look different, depending on the creature we are talking about.... for example if you are an elephant, this animal may gather around the deceased elephant, investigating and touching the body with it trunk, and covering the corpse with soil and branches, or what about the dolphin? Dolphins may carry their dead calves for weeks, touch them, and swim around them as if trying to rouse them. 

What this article reminded me tonight is that so much goes on underneath the surface! We can't see it, but that doesn't mean the feelings aren't there! This is exactly what happens with grief, loss, and trauma! People can't necessarily see our reactions, our symptoms, and our feelings. In fact, they may think we look perfectly fine. But if you take the time and try to empathize and put yourself in someone else's shoes, you may catch a glimpse of the reality. 

This may not look like a big deal to you, but to me it is! For FOUR years, I have had this canvas picture of flowers just sitting on my bureau. The notion was we were going to hang it. But we addressed everything else in the house, but not this picture. I finally had it today! No one is going to take this on..... I have learned if I want something done, I have to do it myself. So upstairs I went with my level, hammer, picture hanger, painters tape, and a tape measure and finally hung this picture. 

Tuesday, October 21, 2025

Tuesday, October 21, 2025 --- Mattie died 817 weeks ago today. 

Tonight's picture was taken on October 31, 2008. Mattie celebrated Halloween both in the hospital at with his preschool buddy, Zachary. Mattie thoughtfully chose this mummy costume. A non-profit donated costumes to the hospital for children to celebrate Halloween. Mattie had a private showing of the costumes, which I appreciated. Because Mattie's right arm was casted and bandaged from a limb salvaging surgery and he was very self conscious about it. When Mattie saw the mummy costume, his eye lit up! The reason of course was the costume hid the fact that his arm was casted. We had a wonderful time trick or treating through the administrative offices at the hospital, decorating pumpkins, and having all sorts of treats! It was an afternoon I will never forget. 

Quote of the day: Memories have huge staying power, but like dreams, they thrive in the dark, surviving for decades in the deep waters of our minds like shipwrecks on the sea bed. ~ J. G. Ballard

Check this out!!!! It is a Lego MRI Scanner set! Thank you Jean for sending me the below article. 

Wow, we could have used this Lego kit when Mattie had cancer. I always said Legos were therapeutic! They got us through some very difficult days in the hospital. But now Legos has created a MRI model that child life specialists model which is being used to help normalize this scary machine for pediatric patients. What an amazing idea. These kits are NOT for sale, but instead, Legos donates them to hospitals. I LOVED THAT IDEA!

These kits have been shown to reduce children's anxiety and it has been found that 46% of healthcare providers reported needing to use less sedation during a MRI after the children played with the set. The article is touching, because it focuses upon a 14-year-old child with cancer who was committed to building this intricate model. Not for himself, but to help the other children in treatment at his hospital. What this article reports, I saw first hand in the hospital. Kids would help one another, bond with each other, and share fears in ways they just couldn't do with their parents! The spirit of a child just can not be broken, even with cancer. 

I encourage you to check out the story, How Lego MRI scanner sets are reducing anxiety in children undergoing medical treatment. In fact, I sent this article to our child life specialist and she told me she is familiar with this kit and that it works beautifully at helping to educate children about the frightening MRI process, thereby making the actual MRI more manageable. 

This afternoon, after taking my parents out for frozen yogurt, I came home and worked outside. It was 70 degrees in October, and I figured I needed to celebrate the warmth. 

In 2021, my former mother-in-law sent us a pumpkin inflatable. I have put out her pumpkin for four years! This weekend, her pumpkin stopped inflating. So to keep the tradition going, I bought this one. 

What is charming about this one is the cat pops in and out of the pumpkin, on its own.

She even lights up at night!

As of tonight, I have brought every plant of mine that gets wintered inside, in the house! It was a big labor, but it is done! The transition inside is always hard, but when they adjust, I just love seeing greenery during the cold and dark days ahead.

Monday, October 20, 2025

Monday, October 20, 2025

Tonight's picture was taken in October of 2008. Without a doubt, I know it was a Friday! Why? Because Mattie was participating in the Chemistry Club's experiment. Every Friday, the University's Club came to the pediatric units. Mattie loved this Club and got along splendidly with Chris, their president. That day they were making snow balls out of dry ice. The kids were given gloves and as you can see Mattie was holding a big ball of ice and was absolutely fascinated. One of the many things I loved about this Club, was I got to experience Mattie the child, NOT Mattie the child with cancer. 

Quote of the day: A person’s memory is everything, really. Memory is identity. It’s you. ~ Stephen King

This morning after I dropped my dad off at his memory care center, I ran back home to pick up my mom and take her to the hospital for her pulmonary function test and follow up appointment with her doctor. I can't tell you how much my mom dreads this test. She started worrying about it on Saturday and by Sunday, she had worked herself up into a silly! There was NO rationalizing with her. Mind you this test is NOT new to her! She takes it yearly, and has done so for years. Nonetheless, you would have thought she was signed up for a horrifying and invasive exam! 

Yesterday, after trying to calm her down about today, I finally said...... this fear is irrational! I told her she doesn't have a tumor, she isn't gravely ill, and this test doesn't hurt! In addition, I told her Mattie, who was six, managed all sorts of tests. So if Mattie could do it, so could she! 

Any case, we know the pulmonary function test tech quite well. He is lovely and understands my mom's anxiety about this procedure and truly works with her every step of the way. Keep in mind that I am right next to her and helping throughout the process. Thankfully the test is behind her, her results are consistent from last year, and when I told the doctor how much she hates this testing, he agreed to forgo it next year. Truly music to my ears, because my mom's level of stress and anxiety adds a whole other layer upon my own. 

When I got home later in the day, I went to my Foundation's email account and guess what???? I couldn't access it! I literally tried everything. I could log onto it with my phone, but not on my computer. I dislike doing any serious work on my phone, so the fact that I couldn't access email through my computer almost sent me over the edge. I finally called the company's customer service and I learned there is an outage and it isn't my fault or problem. The level of stress immediately dissipated. But since my separation, little things frighten me. It is scary knowing that I no longer have my other half to turn to for support, help, and to brainstorm ideas. This has been a massive adjustment for me, because after 35 years, it is only natural to develop a dependence on someone. 

This evening, I made fresh tomato sauce. Since my dad hates tomato skins, I blanch the tomatoes and peel the skins off before making the sauce. Needless to say, my parents ate well tonight. But then again, every day, I work hard to provide them with nutritious and tasty meals. As I always say, thank goodness, I took after my grandmother..... because like her, I am a work horse. She was the ultimate caregiver, so I learned from the best.