Wednesday, August 27, 2025

Wednesday, August 27, 2025

Tonight's picture was taken in August of 2007. We were visiting my parents in California and that week, we went to San Diego. This was always a favorite spot for Mattie, and there were countless things for him to do there.... everything from Legoland, Sea World, to touring the USS Midway. These were happy times, times when childhood cancer was no where on my radar scope, nor did I have the foggiest understanding of the long term psychosocial consequences of this disease on a family. 

Quote of the day: See beauty in those unexpected places. (she asked herself how people could let Bach be background noise.) See the opportunity in what looks like inconvenience. (she steered clear of the traffic jam and went to the bakery she's been meaning to stop at.) She embraces the undeclared possibility in what seems like just another ordinary day. (her friend is scheduled for cancer surgery and suddenly everything around her seems so very precious.) ~ Mary Anne Radmacher

This morning was another winner of a day with my dad. So much so, that I contacted his doctor. I think as my dad becomes less mobile, this impacts every aspect of his life. It was such a difficult start to the day, that I wasn't sure I could get him to his memory care center. But fortunately I found a window of time in which I could safely get him in the car, and it worked. Thankfully the team at the center understood today's issues and it made such a difference knowing that the team is on it, and I can get a break for a few hours. After I dropped my dad off, I moved along to my computer appointment with a technician. Since today is ironically national "Just Because Day," I decided that it was important for me to take charge of how my computer backs up data. JUST BECAUSE! I know, not very exciting, but definitely very important. In January of this year, I started a membership with the Geek Squad, and literally I am talking with these folks every other month. I am so grateful to have this support. 

In my last virtual Geek Squad appointment, they suggested that I come into the store today, with my computer and old external drive in tow. The representative who helped me, reminded me of my college friend Dave. You know when you see mannerisms and traits in one person and transfer them onto another? Well this happened with me today. The tech was bright, helpful, but calm. Which is perfect for me, because with technology, I can get worked up in seconds. He listened to my concerns and even pulled his colleague in from the back to help. 

I have an external drive, used to back up files. We have used it for years, but when I plugged it into my computer, forget it. I couldn't access it! I assumed I was doing something wrong. So that was one of the first issues we addressed. As he said to me today.... it's not you, it is this device. He told me it was old and NOT functioning! No one could get the drive working and open. The tech helped me with the purchase of a new external drive and showed me how it worked. From there, we talked about the cloud. Another thing I am clueless about. However, turns out I am not as clueless as I thought! I explained to the tech what I have deduced about my computer and that is I have to work through the desktop, which then automatically backs files up to my cloud account. In the past, our home had its own private server, but this server doesn't back up to the cloud. So now I have to work on uploading files from this server onto my desktop, and I believe me this will take me weeks. But I am on a mission. I am on a mission because I am afraid of losing data, losing Mattie photos, losing Mattie videos and all the things I need to keep me organized electronically.

I am on a journey of self discovery, rather funny at my age, but I guess we are never too old to learn something new, to gain independence to navigate life on our own, and find the resources needed to accomplish this journey. I view today as a success. I feel more confident in how to back up files and I have learned that celebrating the small things, is definitely important, not JUST BECAUSE, but because life is comprised of many small things, and these many small things, add up to large things that define our existence. 

Tuesday, August 26, 2025

Tuesday, August 26, 2025 -- Mattie died 809 weeks ago today.

Tonight's picture was taken in August of 2004. Mattie was two years old and was visiting my parents in California. Going West with Mattie was always entertaining. He was a great traveler.... he loved the whole airplane experience and was all about adventure. However, California, being three hours behind Washington, DC time, Mattie's sleep and wake cycle would be off for days. Literally Mattie would wake up at 2 or 3am, bright eyed and ready to start the day. As you can see Mattie found my sandals and was walking around the house in them. An adorable face and not a day goes by when he isn't missed or thought about!

Quote of the day: It's so weird how that can be, how you could have a night that's the worst in your life, but to everybody else it's just an ordinary night. Like on my calendar at home, I would mark this as being one of the most horrific days of my life. This and the day Daisy died. But for the rest of the world, this was just an ordinary day. Or may be it was even a good day. May be somebody won the lottery today. ~ R. J. Palacio

Today is National Dog Day! A time to recognize the loyalty, companionship, and service that dogs provide. The day honors family pets as well as working dogs that serve in law enforcement, search and rescue, and therapy roles. It also raises awareness about adoption and the importance of caring for animals in need.

Though Sunny is no longer by my side, his memory remains alive and well in my house and heart. A dog never to be forgotten! 

This summer marks 17 years in which I have written this blog DAILY! Not ONE year, not TWO, not ten, SEVENTEEN! Not a day goes by when I do not write. For my loyal readers, you know exactly what I am talking about. In the past, if I traveled, even on a cruise, my computer came with me, and there was always a blog posting. My blog readers have traversed with me through the hospital, Mattie's diagnosis, Mattie's treatment.... the good, the bad, and the horrific, Mattie's death, my 17 year journey with grief, my health scares, all my vacations, my role as a caregiver and now my divorce. This blog is many things, but at the heart of this blog is candor, honesty, and it reflects my inner most thoughts and feelings. Mattie's blog has always been a PERSONAL space to write, reflect, process, and of course share Mattie photos and memories. Each reader of this blog, becomes a part of my Mattie family and helps me carry on his legacy. This is a personal quest, NOT a professional one, and I am so honored you join me! 

What would my life be like NOT writing the blog? I truly don't know, but I do know, if I am not writing, this would mean something is profoundly wrong with me. There are many ways, both positive and negative, that we as human beings learn to cope with life's daily grind and crises. My coping strategy has always been writing. When I first started writing the blog in July of 2008, I really had NO IDEA what I was doing or what to write about! Mattie was just diagnosed, I was traumatized, couldn't sleep and wasn't eating. It was as if someone sent an electric current through my entire body! I was wired, anxious, and couldn't settle down. On a daily basis family, friends, and our school and work communities wanted updates about Mattie. It was exhausting telling the story countless times a day, and sometimes I just couldn't talk because I was with Mattie. Which was when we decided to set up a blog. Back then, Caringbridge, or other platforms did not exist. So we turned to blogger! 

As I began to write, sure I reported things out like a reporter.... giving the facts about what Mattie was facing and what we were facing as a family. However, my personal nature and professional education are centered around emoting! So as I began to get more comfortable with writing the blog, the blog began to explore raw emotions and issues... fear, joy, sadness, depression, anxiety, grief, trauma, you name it! All the natural and understandable psychosocial issues that arise when your child has cancer and how this altered my life in every way. I do believe it is my candor, honesty, and ability to walk you through my day that has brought so many readers to Mattie's blog. After all if you just wanted facts, you could easily search for that on the Internet. This blog is about my lens, my perspective, and it is my journey of survival, survival of many impossibles! Some days, I joke to myself, that you are tuning in just to see.... did Vicki make it through another day???? Through sharing my innermost thoughts and feelings, which I assure you takes great courage, I have gotten connected to so many of you. Which is a blessing! Over the years, I have gotten feedback about my writing and how it has helped you. I laugh at times, when a reader says..... "I did a Vicki, or I channeled my inner Vicki," which usually means being assertive and advocating for your own medical needs or that of others in your care. 

For me being open and honest on the blog is easy. It is easy because I have had 17 years of practice. But even with practice, it requires a great deal of courage and vulnerability to write and share my journey. However, with time and daily discipline to write this blog, it makes it easier to be open in this space and I would like to think that through my openness, my words and experiences resonate with you. You may identify with what I am expressing, perhaps I am putting your own fears and thoughts into words, or at the very least you are seeing.... YOU ARE NOT ALONE! One of my favorite lines in the world. It conveys just so much, because at the end of the day, none of us want to feel alone. We all want to be connected in some way, because it is through human connections, that life is far more meaningful. 

So for example, why do I tell you about the specific caregiving challenges I face on a daily basis? Issues such as intensive clean ups. Could I spare you the details? Probably, but then that wouldn't be real! It wouldn't be authentic! Could I give you a briefer overview of these issues? Probably, but there is NOTHING about caregiving that is for the meek. I think through open and honest dialogues, it normalizes issues that maybe more difficult to discuss out of fear that we may be misunderstood or that we are different. By sharing thoughts and feelings openly, we can see that we are actually more alike than different! Similarly, for those of you who lost someone meaningful in your life, then you know how crushing this is, and frankly the only way to deal with grief (of any kind) from my experience is talking about it, talking about it some more, and MORE, and MORE, and MORE. Yes I have done 17 years of writing, but many of you have done 17 years of reading! People are reading my words around the country and beyond our 50 States. For each and every one of you who absorbs what I write, who shares in my journey, who reads my blog before you go to bed or when you wake up every morning (so touching to be part of you daily routine!), I am GRATEFUL! This shows the power of my Mattie Brown, a mother's undying love, and the willingness to be vulnerable. 

Monday, August 25, 2025

Monday, August 25, 2025

Tonight's picture was taken in August of 2004. Mattie was two years old and we were in California visiting with my parents. That day we went on an adventure, I believe this was Westlake, but since it was so long ago, and a place I never went before, I don't remember exactly. But if there were ducks around, rest assured Mattie wanted to feed them! Mattie always commented on the relationships and bonds he saw between the birds. The apple didn't fall far from the tree on that front! When my mom was a child, she feed the birds with my grandmother, when I was a child, I remember feeding the birds with both my mom and grandmother, so in a way, this photo featured three generations who were in love with connecting and feeding the birds. 

Quote of the day: For them, it was nothing but an ordinary day on an ordinary day on an ordinary weekend, but for her, there was something revelatory about the notion that wonderful moments like these existed. ~ Nicholas Sparks

My lifetime friend, Karen, sent me a video last night of Arnold, the Canadian Goose, who was injured in New England. The story captured my heart, because it shows the power of connection, commitment, and love. As humans, we think we are the only ones who can possess such deep and meaningful feelings and thoughts. Of course any pet owner can tell you the special bond they share with their dog or cat! Our pets love us unconditionally, they are good listeners, they get us interacting with the outside world, and they seem to know when we need to take a break from working. Goodness knows, Sunny (my Australian Shepherd who died in 2024), left an indelible mark on my heart and he will be forever missed. But what about birds? I know when my mom was a teenager, she had a parakeet named Flip. I have heard countless stories about Flip over the years. Flip apparently could tell when my mom was coming home from school and walking up her apartment staircase. Flip sensed her and would flip out! Flying about, making a racket, and greeting my mom at her front door. 

Canadian Geese truly intrigue me. They always have, mainly because in the winter time, they are beautiful signs and reminders that nature is alive and well. I love seeing them dotted all over the winter grass, flying in their V formations and I admire their ability to form strong bonds and live as part of a community group. Did you know that at the age of 2 or 3 years, geese begin to seek a mate through the process of assortative mating, which means they look for a bird that is about the same size as them. Geese can live between 10 to 25 years, so it's not uncommon for a pair to be together for a decade or longer.

Now hears the part that always gets me, when a goose loses its mate, it typically enters a period of deep mourning, exhibiting "human-like" signs of grief such as hanging its head, appearing apathetic, or becoming withdrawn. The widowed goose may also stay near the site of its mate's death, searching for them for extended periods.

The video below highlights the story of Arnold and his mate, Amelia. Amelia saw that Arnold was captured by the wildlife center staff and she literally followed them back to the clinic and pecked at the sliding glass door of the surgical room, because she wanted to get in and to see what was happening with Arnold. Arnold needed surgery, and just like any of us who had a loved one in surgery, we would want to meet the doctor and see what was going on for ourselves. Amelia apparently felt the same way and also visited Arnold daily while he was recovering! No one was talking about the psychosocial impact or benefits for Arnold by having Amelia present, but I wouldn't be surprised if his recovery time was shortened by having her daily visits. I think Arnold shows us, that being ill is NOT JUST ABOUT THE MEDICINE. The power of bonds and connections are an incredibly healing factor that can not be overlooked or ignored. 

Sunday, August 24, 2025

Sunday, August 24, 2025

Tonight's picture was taken in August of 2006. Mattie was four years old. This was a typical sight in our living room..... Lego, cars, trucks, and trains. Mattie loved to build and create and he would create elaborate play schemes and of course always wanted us to play along. I may have been Mattie's mom but the other important role I served was play buddy! Watching Mattie in motion was something I will never forget, as he had a sheer love for life.

Quote of the day: I think that the so-called average person often exhibits a great deal of heroism in getting through an ordinary day. ~ Harvey Pekar

This morning, my friend from England, sent me a two minute video to look at about finding the good in each and every day. The video mentioned that on tough days it maybe hard to see anything other than the negative, and yet we can still find moments of joy, things to be happy for if we look for them. The video pointed out that as humans we are almost conditioned toward negativity bias. Meaning we focus on what is wrong, overlooking the positive. Certainly focusing on the negative is crucial during a crisis, when we have to assess all the things around us that could cause harm and danger. However, what happens when we are not in crisis? It takes a lot of focus or to retrain ourselves to notice the good and the bad, in order to create a more healthy balance. 

I let the the content of this two minute video sit in my head all morning. I do think in between sadness, anger, and feeling distraught, that I am aware to never forget the things I should be thankful for. So for example, do you know every morning, while I am toweling my dad off and working on getting him dressed, he usually says to me..... YOU ARE A BEAUTIFUL and SMART LADY, or I LOVE YOUR NECKLACE, WHERE DID YOU GET IT? In my dad's way, this is his way of telling me that he appreciates me and he is aware of my efforts. Before I got my dad out of bed this morning, he started asking me questions about what he could see from his bed, hanging in the hallway. My dad wanted to know about these photos by the staircase. I was impressed he could see them from his bed! He says he has been admiring them and wanted to know where I got them!

I explained to my dad that these frames and photos were Mother's Day gifts to me from my husband in 2012. As my husband always said (I still have his card on display in my office).... "You are the best mother and person I have ever known." As I was recounting this to my dad, his response to hearing all of this was..... your husband was correct, you ARE the best person he EVER will know. Leave it to my dad! These moments of clarity and connections with my dad are positives, which I absorb and never overlook.

Before I took my parents out to brunch today, Indie and I sat on the porch for 15 minutes together watching the hummingbirds. The hummers fascinate me because it is hard to believe something so tiny and beautiful can actually fly and buzz around! Indie is equally fascinated! She never tries to chase or scare the hummers! GOOD GIRL! When I can pause and look at greenery, I can see glimmers of positives in the world. They maybe fleeting, but I am aware of them. 

Since talking to the vet on Friday, I am trying to understand why Indie is pooping outside of the box. This is a behavior she has never done before. On Friday, I decided to white vinegar her box. White vinegar is like the magic cleaning solution to about every household problem! Though cats don't like vinegar, I think Indie appreciates it more than my Clorox based products. I am hoping that my new cleaning routine will make a difference. 

While at brunch today, one of the managers came over to talk with us. She is a new mom and shared many new mom issues with us. She literally sat down with us and was chatting. I listened, was supportive, and then gave her my two cents. After talking with us, she literally said to me.... thank you for letting me vent, for listening to me, and for making me feel better. To me, if I can think beyond my own issues and problems and help someone in some way, then I view this as a positive, which ultimately gives my life meaning.  

Saturday, August 23, 2025

Saturday, August 23, 2025

Tonight's picture was taken in August of 2006. Mattie was four years old and that week, my parents and I took Mattie to San Diego. Mattie loved these road trips and truly there was something magical about San Diego. That day we visited Balboa Park, which to me is a must see if in the area. This is an 1,200 acre park filled with museums, restaurants, and the famous San Diego Zoo.  I happen to love lotus flowers, so when I saw them in the park, I pointed them out to Mattie. Mattie knew what they were already because our of annual visits to the DC Aquatic Gardens. What you may not be able to see in this photo was Mattie holding toy cars in each hand! A Mattie trademark!

Quote of the day: It must be those brief moments when nothing has happened - nor is going to. Tiny moments, like islands in the ocean beyond the grey continent of our ordinary days. There, sometimes, you meet your own heart like someone you've never known. ~ Hans Børli

At Easter time, I featured three Kalanchoe plants on our dining room table. Since April, I have kept these plants alive in these tiny pots. Today, I decided to repot them and place them in my kitchen plant stand. I used to buy flowers for special occasions. Now I only buy plants, because after the event, I land up cultivating the plants and either using them in my garden or inside. 

My mornings are hard! There is really no other way to say it. As my dad's dementia moves from the moderate to late stage of the disease, he has lost control of his bodily functions. Therefore, the clean ups in the morning are a killer. Though his side of the bed is fully lined with waterproof pads, everything needs to be soaked in white vinegar and then washed daily. Today, my order for waterproof pillow protectors came in, which will be a blessing, because I prop my dad's legs up with pillows at night, and each morning, I land up having to soak and then wash the pillows. What once was a 30 minute washing and dressing routine with my dad, is now a 90 minute routine. 

My dad's physical therapist came over today and while she was with us, we chatted. While chatting, I repotted plants. Many of the plants that go on this stand are outside now, and will come inside for the fall. I still remember getting these beautiful flower pots..... they were purchased by my husband for our plant stand. He purposefully got them for me because they have Mattie Miracle colors. In every part of our home, there is some sort of tribute to Mattie. Some tributes are very noticeable and others are very subtle! But Mattie's presence is alive and well in my home, car, and heart.  

My dad's physical therapist is in the process of buying her first home with her significant other. I remember that stressful moment so well, as it wasn't that long ago that I moved into this house. I had no idea when we moved in 2021, that my marriage was going to end in such a catastrophic manner. No one in my life, family or friends, saw this coming. When Mattie died, I no longer could handle hearing about people's pregnancies and babies, and now that my husband left me, I would say that all the things associated with marriage are topics that cause my heart to skip a beat. It is getting to the point that soon, I will not be able to relate to anything or anyone!     

Friday, August 22, 2025

Friday, August 22, 2025

Tonight's picture was taken in August of 2007. We were in Los Angeles visiting my parents. This was an annual trip, and Mattie loved it! Going to LA was always full of fun and adventures. That day, we visited the Zoo. It was SO HOT, that we bought Mattie the water bottle he was holding, that had a battery powered fan attached to it. Mattie thought that was a great invention... misting himself and then having the fan blowing on him! Don't you just love that smile? The adventures I had with Mattie Brown will never be forgotten. Here's the funny part, I lived in LA as a teenager and NEVER visited the Zoo. Mind you it was even close to our home! When Mattie came into our lives, he opened up a whole new world for all of us!

Quote of the day: It has taken awhile, but I certainly do know it now ­­– the most wonderful gift I had, the gift I finally learned to cherish above all else, was the gift of all those perfectly ordinary days. ~ Katrina Kenison

Last night, I got my dad into bed and propped up on all sides. I checked on him this morning, and he had moved, but wasn't slumped over. Which was a good start. I am hoping I can replicate what I did last night, because when my dad's back is in a better sleeping position, then it is much easier getting him out of bed in the morning. I truly hope that I am onto something and on the right path. Because it has been a very difficult week. I may have access to three different physical therapists and countless doctors, but guess who had to figure out everything? YES, ME, THE FAMILY CAREGIVER! Again not unique to Vicki, but the plight of all family caregivers. We are the ones who are resourceful, resilient, and persistent!

When I went downstairs to the basement to feed Indie, I noticed she once again pooped on an area rug. Same rug, different place on the rug. That makes it three times (Sunday, Monday, and Friday). Sunday, I felt she was sending me a message.... she wanted brand new litter! Monday, I figured it was just a reminder of her displeasure with me on Sunday, but then she used the litter box the rest of the week, until this morning. I can't tell you how upsetting this is and of course I naturally figure..... something is medically wrong with Indie. So at 7:15am, I called the vet. The lady on the phone was lovely! I told her the story and she consulted the vet. They feel that Indie's issues are behavioral. But just to rule out medical issues, I have moved her annual appointment up from November to September. They gave me the assignment of buying a NEW litter box. Here's the funny thing! Prior to Indie, we had Patches. Patches was with us for at least 15 years. During that time, she may have had two litter boxes in total. I keep the boxes very clean daily, so I have never had a cat poop outside of a box! I know it is common, but it is not common to me. We bought Indie a new litter box when we moved into the house in 2021. So to me this box is NEW. But the vet tells me that sometimes these plastic boxes need to be changed yearly! Perhaps, but to me it isn't the box, it isn't the litter and it isn't the position of the box. If it was one of these reasons, then why out of the blue is this happening now? 

The vet was saying that sometimes any changes in the house can set a cat off! The only recent change we had was the bathroom flood and my mom moving bathrooms (the bathroom associated with my husband's office) -- a room that Indie identifies as her own, and where she bonded by day with my husband. But my husband moved out in 2023. I was at that point that I thought Indie was going to lose it, after all Indie was closer to my husband than me. I was expecting Indie to be depressed and to not adjust well to this loss. But what Indie showed me was she was adaptable and she quickly moved her gravy train over to me. So the question is what explains the behavioral change now?

Switching gears, I was chatting back and forth with my friend in England today. We have never met each other, but we are bonded over the same thing... betrayal and abandonment. In any case, she was writing to me today about structure and the ordinary. Which is what triggered tonight's quote. I believe when facing grief and trauma, the best we can do is stick to routine and structure. Structure provides the patterns to hold us up each day, it keeps us in the present and also keep us engaged with life. I find altering from this structure, causes me great upset. When I have great upset, then I focus upon what has happened to me, something my brain still can't comprehend. I can't understand how I can miss someone and every aspect of our life together, whereas these feelings are not reciprocated.

What I do remember was when Mattie had cancer and we were living in the hospital, I used to reflect on how I wanted the ordinary, regular, and normal days back. I longed to be just like everyone else..... able to freely go grocery shopping, clean one's home, do laundry, and all the other daily tasks we gripe about, but which are actually blessings. They are blessings, because it means we have the freedom to do them, and are healthy enough to independently do them. I may be deeply distraught from being discarded as a wife, but I can still appreciate the magic of ordinary days. 

My mom said tonight's dinner was worth a photo! My dad LOVES shrimp. He would eat it daily if he had his way. I made shrimp scampi with arborio rice and broccoli with tarragon. 

Thursday, August 21, 2025

Thursday, August 21, 2025

Tonight's picture was taken in August of 2007. Every August, we took Mattie to Los Angeles to visit with my parents. That day we went to Griffith Park, a Mattie favorite. The irony was I lived close to Griffith Park when I was in high school, yet it took having Mattie to get us to visit the park and explore it! It is an amazing park, filled with something for everyone..... the LA Zoo, a train museum (Travel Town), train rides, pony rides, and a Dentzel Carousel. Mattie loved this Park so much that every time we visited LA, we went to Griffith Park. How different our Augusts looked back then! These were happy and more innocent times. Before I learned about the horrors of childhood cancer and about abandonment and betrayal from the person I trusted the most. 

Quote of the day:...the grief would always linger, a ghost that would haunt every happy moment in her life until it became all she knew. ~ Jennifer L. Armentrout

The saga about getting my dad in and out of bed continues. One of my dad's physical therapists recommended that I have my dad sit on a pillow while he is sleeping, in hopes that the pillow would prevent him from sliding down the bed. Well, I tried to place my dad on top of a pillow last night, and it was a BAD plan. He was so wobbly on the pillow, I thought he was going to fall out of bed. So I got him up, removed the pillow and got him back into bed. It literally took me thirty minutes to get him into bed last night and positioned correctly. I can't quite put into words how frustrated I am with this whole process. My dad is unable to help himself in any way and thinks that I can move him without a problem. WRONG! My dad is dead weight and impossible to move, much less budge. 

This morning, as soon as I got up, before feeding Indie, I went into my parent's bedroom, hoping to find my dad propped up! FORGET IT! He was slumped over on the right, leaning on the bed rail, and had slid down the bed. I worked for 15 minutes to straighten him back up, which meant standing on the bed, behind him, and pushing his back up, to prop pillows behind him. Why is it important for him to be propped up? Because his convoluted slumped position aggravates his back, making him scream in pain whenever he has to move. Not to mention that it is impossible to get him out of bed when his back hurts. I have discussed getting a hospital bed with my dad's therapist, and it may come down to this, not for his benefit, but for mine. A hospital bed would give me more options to work with my dad. However, whether my dad is in his current bed or a hospital bed, he is still going to slump to the right. There appears to be no amount of wedges and pillows to stop this leaning!

This afternoon, my dad had a follow up appointment with his cardiologist. I LOVE my dad's cardiologist. He is a class act. Bright, competent, compassionate, and KNOWS his patient's needs, reactions, and history! When my dad was in the hospital, the hospital changed all of his blood pressure medications. This caused havoc on my dad! I learned today, that when one of my dad's blood pressure meds is stopped quickly (as it was when he was admitted to the hospital), this causes a spike in his blood pressure. So on discharge, the hospital prescribed medications to lower his blood pressure. But there really wasn't anything wrong with his blood pressure, if he was kept on his original medications. This is an important fact to know, and it arms me with the knowledge to fight these changes in the future. My dad is very sensitive to medications and therefore the doctors who know him, know that changing his medications is NEVER a good idea, unless absolutely necessary. 

A few weeks ago, I had a conversation with my breast surgeon about the doctors coming out of medical school today. She is a lot like my dad's cardiologist, invested in her patients. She told me she was concerned about who was going to take care of her in the future! Ironically my dad's cardiologist had a similar conversation with us today. I was telling him about my experiences with medical residents and he told me so many use AI to diagnose patients rather than logic, reasoning, knowledge, and clinical experience. If this doesn't frighten the hell out of you, it should! My dad's cardiologist was telling my mom that being a physician requires a certain amount of intelligence, but that this isn't what ultimately makes an excellent doctor. He went on to talk about the art of medicine. Well this whole conversation reminded me of the argument I had my with dad's foot doctor a few weeks ago. I told the cardiologist today about this argument. I told him that the foot doctor highly recommended her tech to medical school. I have known the tech for years, as she sees my dad every 9 weeks! However, this tech in my opinion is dopey. She never makes eye contact, doesn't talk with us, doesn't get to know me or my dad, but goes through the motions. When the foot doctor said this tech got into medical school and that she highly recommended her, I literally said, I AM SORRY! I told her this was the last thing I was expecting to hear, because I do not think medicine is a good fit for this young woman. My foot doctor and I got in such a heated discussion, we landed up not talking to each other for the rest of the medical visit. Today's conversation with my dad's cardiologist, confirmed everything I was saying to the foot doctor. Being a physician is a noble calling, and those doctors who listen, communicate with patients, encourage patients to play an active role in their medical care, are the ones who rise to the top. After all, if a doctor can't listen to a patient and understand the presenting problem from a patient's perspective, then I believe a lot will be missing that could contribute to a more accurate diagnosis and treatment plan! I am saddened that this foot doctor does not have this understanding and I am also saddened that there is a whole crop of new doctors out there guided solely by data and artificial intelligence. Human beings are greater than their medical data!

Last night while taking my dad upstairs to bed, I looked out the window. Look who was  staring right back at me. There was a family of four deer on our front yard.... two females and two babies. Mattie would have absolutely LOVED this sight, and naturally whenever I see these wonderful gifts from nature, I think of Mattie. 

Wednesday, August 20, 2025

Wednesday, August 20, 2025

Tonight's picture was taken in August of 2007. Every August, I used to take Mattie to Los Angeles to visit with my parents. We always stayed two weeks and had all sorts of adventures together. Thank goodness, because we truly had to pack in a lifetime in only seven years. That afternoon, we took Mattie to Emilio's, a restaurant in Sherman Oaks, CA. My parents went to this restaurant every Friday, and Mattie loved the fountain that was on the patio of the restaurant! As you can see, he had no problem posing for a photo by the lion! When I look at this photo and compare it to my life now, it truly brings about great sadness. If anyone would have told me that Mattie was going to get diagnosed with cancer a year after this photo was taken, or that 17 years later, I would be divorced.... I wouldn't have believed any of it! I maybe living it, and yet there are still times I can't process or accept it. 

Quote of the day: Betrayal is a more subtle, twisted feeling than terror. It burns and eats, but terror stabs right through. ~  Wendy Hoffman

I have three different physical therapists working on a strategy to get my dad out of bed in the morning. We are all trying to figure out why he slides down the bed while sleeping. When I put him to bed, I have him propped up perfectly! With all the wedges and pillows I am using, you would think it would be impossible for him to move. But he never ceases to amaze me. If my dad would remain in an upright position, then by morning, getting him out of bed would be much easier. But lying down flat is the kiss of death for him, as this causes him intense back pain. Therefore, trying to sit him up and move his legs over the bed onto the floor are excruciatingly painful. My dad has no understanding for how heavy he is or how difficult it is for me to move him, he just expects me to do the work. I am a lot of things, but stupid isn't one of them. Therefore I realize I have to be physically careful because if I get injured this whole circus show stops functioning. 

After I dropped my dad off at his memory care center, I then went to my Geek Squad appointment. I met a tech and got information about my phone and booked another appointment for next week, to get someone to work with me on how to back up my computer files. I do not understand the mechanics of what my husband set up in our home and I can't get our external drive to work either. There are some topics I am NOT well versed in and technology is one of them. In jest, I would always say to my husband that together, we had the skill sets to deal with just about anything we had to face in life. Which was truthful, and probably the reason why we were able to start up a non-profit from scratch and run it without paid staff. It is a major life adjustment for me to navigate life without my other half. I HATE IT and NEVER SIGNED UP FOR THIS.

Later today, I was juggling a grant support application for Mattie Miracle, and working with our CPA to complete our Foundation's 990 and other materials for our financial audit. I would love a day when I am not juggling anything, or worried about a problem or an issue. In the midst of doing paperwork, caregiving, water plants and other yard issues, I also cooked dinner. 

Food is one of the things that is important to me. No matter what state I am in, I am cooking. My cooking is not about throwing stuff together, but very intentional and fresh. Because of my love for eating, it naturally inspired me to learn how to cook as a young adult! My husband used to tell people that in ALL our married life, I never served one bad meal!

Tonight I made a chicken meatloaf with onions, carrots, mushrooms, and broccoli. Beans with fresh mint and lemon, and my corn with tomato and basil salad. 

Tuesday, August 19, 2025

Tuesday, August 19, 2025 -- Mattie died 808 weeks ago today. 

Tonight's picture was taken in August of 2007. This was a year before Mattie was diagnosed with cancer. I went to a conference in New Orleans and I brought back a Mardi Gras mask for Mattie. As you can see, he loved it. It was a special time in our lives. Mattie was healthy and about to enter kindergarten and I was working part time and involved in leadership positions at various professional associations. Childhood cancer altered the whole trajectory of our lives. Which is why Mattie Miracle's tagline is.... It's NOT just about the medicine. Once Mattie was diagnosed, I stopped teaching, working, and gave up all my professional positions. If Mattie was never diagnosed, then I am quite certain my life would have looked COMPLETELY different. That is how devastating a disease it is for both the child and the family. 

Quote of the day: Mental pain is less dramatic than physical pain, but it is more common and also more hard to bear. The frequent attempt to conceal mental pain increases the burden: it is easier to say 'My tooth is aching' than to say 'My heart is broken'. Yet if the cause is accepted and faced, the conflict will strengthen and purify the character and in time the pain will usually pass. Sometimes, however, it persists and the effect is devastating; if the cause is not faced or not recognized, it produces the dreary state of the chronic neurotic. But some by heroism overcome even chronic mental pain. They often produce brilliant work and strengthen, harden, and sharpen their characters till they become like tempered steel. ~ C.S. Lewis

So this weekend, I bought this entire wedge pillow system. The reason I chose this one, is because you can move the pieces around to accommodate your needs. Last night, I had high hopes that this set up would work for my dad. I literally got him in bed, and had him propped up perfectly (with pillows all around him). I have wedges along his sides and one under his knees. I figured he was secure, that I would find him in the same position this morning. Forget it. The wedges did not move, but my dad slipped down the bed, so only his head and neck were located where his backend used to be when I placed him in bed. This is a position I definitely do not want my dad in because of his back pain. My dad really can't lie flat, and if he does lie flat, he doesn't have the core strength to pick up his body. He can't roll, he can't sit up, and truly getting him out of bed is like moving 200 pounds of dead weight for me. No matter the instruction I give him to help straighten his body out and reposition, he can't comprehend what I am saying and he has no control over his body once he is lying flat. In addition, any movement of my dad from this flat position, causes intense screaming in pain. So before 10am, I had already went ten rounds, because I had to get him up myself and get him showered and dressed. Needless to say, I wrote to ALL THREE of my dad's physical therapists, as I want them working with him on getting out of bed from a flat position. 

Once I got my dad downstairs, then the bathroom issues occurred. It is very frustrating, especially since I just got him showered and clean. Mornings for me are super stressful and in a way how one begins the day, has a way of setting the whole tone for the day. After I got my dad situated, I then had correspondence back and forth with our home insurer. Turns out once they pay me to get the renovations done, I then have a narrow window to supply photos, documentation and a certificate of completion insuring that the work was actually done. SERIOUSLY the stress just keeps on coming. Caregiving is challenging enough, but caregiving with contractors inside the house, may send me right over the edge. 

I took a pause and went outside to the backyard. As I was walking around the garden and pool, I noticed something on the stone patio. A gooey substance that literally looked like gum all along the periphery of the pool. At first I thought it was gum, but then I connected the dots and realized the person who just caulked the pool made a total mess. I took many photos and put in a formal compliant. It is the story of my life, I do one thing, and it leads to ten more issues and problems. 

Later this afternoon, I got a package by my front door. I opened it up and it was a big bag of Nyjer seed. Birdseed that gold finches LOVE! I knew exactly who sent me this gift... my mother-in-law. As we were talking about backyard birds just the other day and she asked me whether I have gold finches. My response was yes, when my husband was here, we used to keep all the feeders filled. Now I just don't want that added expense, but told her I miss seeing these birds. Which was why she surprised me with seed! I pulled out our Nyjer feeder and moved the bird feeder hooks near my roses so I can watch the birds from our windows! Not unlike when Mattie died, the only thing now that brings me any sense of peace is nature. 

Monday, August 18, 2025

Monday, August 18, 2025

Tonight's picture was taken in August of 2008. Mattie was diagnosed with cancer weeks before this photo was taken. Our whole world was shaken. That day, Mattie went with our neighbor and his dog, JJ, for a walk. Mattie always wanted a dog of his own, and I am grateful for JJ, because Mattie got to grow up with this cute pup! Mattie had all the joys of having access to a dog and anytime Mattie was home from treatment, JJ came down to visit with Mattie. After Mattie died, JJ was severely depressed. JJ wouldn't eat, he would come and sit on my doorstep every afternoon, and if he came into our home, he would find something of Mattie's and bring it back to his own home. It truly was a very touching bond between this Jack Russell Terrier and my Mattie. 

Quote of the day: One of the heaviest load so many people are carrying today is neither thoughts about things they lack nor things they wish to have, nor how to manage what they already have, but toxic words that have taken a greater portion of their thoughts and such words not just occupying a great part of their hearts, but also draining their very joy in life! ~ Ernest Agyemang Yeboah

For two days now, Indie has been having bowel movements outside of her litter box. Indie is typically a clean cat, and I clean out her box daily. On Sunday morning, I figured she was giving me a message..... change the litter completely. So I did! But I was stunned to find the same issue this morning. If this continues, she will have to go to the vet, as this could be a sign she is ill. Though she is behaving normally and eating just fine. 

After I dropped my dad off at his memory care center, I went to the pharmacy to pick up his scripts. The main pharmacist, knows my whole family. She is great with my parents and super helpful! While there, the woman behind the counter wanted me to know that she loved what I was wearing. I of course thanked her, but I chuckled inside, because truly some days, I don't know how I put myself together at all. 

Once I got home, I was determined to contact the Geek Squad. I have them do check ups of my computers every two months. Given that my dad was in the hospital in July, my check up date came and went. Since technology is NOT my forte, I dread doing this activity. Today, I got up the courage to sit down and do the process on-line. The process was more complicated today and it took overall about 2.5 hours, working with two different techs (for each computer) at the same time. Nothing I ever do is quick and easy, but since I do not have these skills and can't consult my husband about any of this, I decided months ago to get outside help. I know my limitations. I am going into the store on Wednesday, and meeting a tech person live, because I want instruction on my phone, how to update it, and I have other questions about how to back up my files on my laptop. My husband had a whole system in our house! It made sense for us, as he was maintaining it but now I just have no idea what I am doing and I can't get the external back up drive to work. This makes me very uneasy, as I want to back up photos, personal files, and all Foundation files. Truly why must things be so hard? Who walks away from a 37 year relationship and has NO REGARD what so ever for anything I am left to figure out on my own??????!!!!!!!

This afternoon, I took my mom out for tea. By the time I got there, I felt like a basket case, between technology issues, managing the insurance claim, and renovation plans. On the way to Starbucks, we ran into a man with a dog. I have seen both of them before. Turns out the dog is 6 months old and she is an absolute love. She came right up to me and loved the attention and pets on her head and ears. For those moments I was with Leava, I forget about all my issues. The beauty of a dog!

When I got back home in the afternoon, I still was wound up like a top. So I decided to rake up all the leaves that fell on my driveway and front walkway. There were so many leaves that I filled up an entire greens barrel. Could I have blown the leaves away, probably, but then one good gust of wind, and they would have been right back to the driveway! If only it could be warm and sunny 365 days a year. The notion of transitioning to Fall and Winter right now is not appealing. Everything is harder in colder weather, caregiving is more challenging and not being able to go out and work in my garden is a major problem. My garden is my therapy.