Friday, April 26, 2024

Friday, April 26, 2024

Tonight's picture was taken in April of 2006. Mattie was four years old. That day I took him to the Reston Zoo. It was one of our favorite places to visit together. It was a small zoo, had lots of hands on activities, and it usually wasn't crowded. Mattie absolutely loved feeding the goats and sheep! I of course loved all the adventures. 

Quote of the day: One often calms one's grief by recounting it. ~ Pierre Corneille

Despite reminding my mom numerous times about her physical therapy session at 10am, I could tell she wasn't processing what I was saying. Before taking my dad to his memory care center, I decided I better go back upstairs and make sure she knew her appointment was going to start in twenty minutes. Luckily I went upstairs, because she was dressed in pajamas and had no recollection about the appointment. My mom needs a lot of assistance with logistics, most tasks, and she prefers to hold onto me when walking. Yet if you ask her, she will say she is self sufficient and has many interests. Unfortunately she is stuck in 2018, pre-COVID, when she was more independent. She laments about leaving California, but in all reality, her existence since 2020, looks pretty much the same as it does now. In other words, very different from her former life. So it is a total lack of insight, which makes her dangerous. 

My mom and I met up with my friend Junko at lunch time. I met Junko in 2007. Our sons were enrolled in the same summer camp. Mattie "graduated" from his preschool and he was accepted into a different school to start kindergarten. Mattie was like me, we both dislike change. Leaving behind his preschool, was scary to Mattie. In order to help him transition, I enrolled Mattie in the summer camp organized by his new school. I figured Mattie would meet some classmates before the school year started. 

The first day of camp was a disaster. So much so that Mattie did not want to return the next day. The next morning, I held Mattie's hand and despite the camp director's rule (no parents allowed in the gym), I marched myself right into the gym with Mattie. I assessed what was going on and how the children were paired off. Most of the kids had already established their cliches. However, I saw a little boy standing alone. I brought Mattie over to this child and asked him his name. He told me his name was, Kazu. I then introduced Kazu to Mattie. I asked Kazu if he knew anyone else in the gym and he said no. I told him that Mattie knew no one either. Therefore, wouldn't it be a good idea to stick together? They both agreed, and that was the beginning of their special friendship. 

It was during that summer camp, that I got to meet Kazu's grandmother. Having grown up in a multi-generational household, I loved that Kazu also lived with his grandmother. I then of course met Kazu's mom, Junko. In fact, when Mattie was in kindergarten his school held chapel every Tuesday. Families were invited each week to take part in the experience. Faithfully I attended every Tuesday as did Junko. Junko and I sat together each Tuesday and over time got to know one another. Our bond only got stronger when Mattie was diagnosed with cancer and she visited me regularly in the hospital. All of Mattie's nurses knew Junko, because of her extraordinary efforts.... bringing me lunch, treats and giving me a back massage. Back then, as like now, life was filled with intense stress, constant anxiety, and feeling uncertain about my existence. Therefore, the kindness and compassion of a massage, will never be forgotten. I couldn't leave the hospital for a minute, so instead, Junko brought the massage to me!

Junko gave me this beautiful butterfly card today. I love these pop up cards, and I have them on display in my office. Sitting for a few hours with my mom and I, is no easy task. My mom has the need to talk and talk, to be heard, and repeats herself over and over. Her record has been playing the same song for the last seven months, and it is wearing. I am already struggling with my marital separation, but my mom's commentary only adds fuel to my fire. Chances are if you sit with us for any period of time, you will see my frustration build with my mom. It isn't like I hear her commentary once and she moves on. NO! She is like a broken record and I am inflicted with her feelings and thoughts every twenty minutes. So if I am feeling low, she will bring me down even further. 

Junko did not skip a beat. She was able to sit in it with us and enabled both of us to be heard and supported. As I tell Junko often, our boys brought us together, and she is the gift Mattie left behind for me. 

Thursday, April 25, 2024

Thursday, April 25, 2024

Tonight's picture was taken in April of 2005. Mattie was three years old. That day we took him to the National Arboretum. It was one of my favorite places to visit in the month of April. Mainly because they have thousands of azaleas all in bloom. It truly is an unforgettable sight, especially coming off of winter. As most of Mattie's friends are graduating from college this spring, for me, life stopped when Mattie died at age 7. No matter how much time goes by, life for me is forever 7. I have no doubt if Mattie were alive today, he would be my greatest ally. 

Quote of the day: Love is love, I told her, as I tell all of my patients who are ashamed to find themselves shattered by the death of a dog. Loss is loss. ~ Meg Donohue

My day started at 6am. I got up early to manage all my morning chores, before the HVAC team arrived at 8:30am. When I tell you I literally had to drag myself out of bed, I am not kidding. I was told to prepare for a furnace install to take 6-8 hours. The two guys were efficient, professional, and literally within three hours that installed the unit and the condenser outside. Because strangers in the house upsets Indie, the cat, I moved her food and liter box to one of the bedrooms on our second floor. I think she was grateful! 

While the furnace was being installed, I decided to go grocery shopping while my dad's physical therapist was here. It is a chore I prefer to do mid-week when most people are at work or school. For the most part I dislike crowds and in my hyper alert stage, I need to keep moving. 

Later in the afternoon, I took my parents to Starbucks. Truthfully this is about the only place we can go to, because my mom and I are devastated and it is comforting to know all the people working at the store and at the same time, NOT have to talk to anyone. I have little to no interest in engaging in conversation. It is too taxing and it neither helps my head, heart, or spirit. Naturally whenever my dad is in tow, there is no peace. I landed up taking him to the bathroom twice at Starbucks. I assure you IBS and dementia are a diabolical combination. My parents are lucky I have a strong constitution, because after one of my dad's bathroom routines, most people would be sworn off of food for good. 

When we got back home, I settled my parents down. They napped for several hours, and I went out to our front yard. I weeded for over an hour and filled up a half of a large garbage bin. The one thing this house is never short on and that's weeds. Thankfully I find it therapeutic to pull out weeds. After yard work, I made dinner. Our meals are typically filled with laments or commentary from my mom and my dad jumping up to the bathroom. I haven't ate a meal in peace for almost three years. 

The highlight of my day, was I received this lovely pop up card from my friend and colleague, Jean. Jean reminded me of a memory we both share.... a professional conference we attended in Hawaii. 

In order to attend this conference, I flew out to Los Angeles and I left Mattie with my parents. I then continued on to Hawaii and I think I was there for about four days. I traveled there alone and I frankly will never forget that moment in time. I was on my way to be elected the President of the American Mental Health Counselors Association. With this big position, a lot of leadership was interested in getting to know me and to interact with me. I recall going out to many wonderful dinners with leaders and at that moment in time, I thought my life was headed in a particular direction. Little did I know that only a few years later, Mattie would get diagnosed with cancer. I NEVER was able to serve my role as president of that organization and my future career and interests changed overnight. Never to be seen again. Going to Hawaii was a happy and exciting time and if someone would have told me that my destination was to have Mattie die in my arms and then 15 years after that have my husband leave me, I would NOT have believed it for one minute. If only I could turn the hands of time back to that moment in Hawaii.  

Wednesday, April 24, 2024

Wednesday, April 24, 2024

Tonight's picture was taken in April of 2004. Mattie was celebrating his second birthday that day! The theme that year was trains! Take a look at Mattie's hands! One had a hot wheel car in it and the other his sippy cup of milk. These things were like his security blanket. Though this party was years ago, I recall the feelings and the day like it were yesterday. 

Quote of the day: The loss is immeasurable but so is the love left behind. ~ Anonymous

This morning after dropping my dad off at his memory care center, I went back home and then drove my mom to the hospital for her pulmonology appointment. My mom has many long standing lung issues, that she is monitored for every six months. The doctor today thought she was doing very well. In comparison to Winter 2023, Winter 2024 was a lot better for my mom. Last winter, my mom developed a lung infection and was on antibiotics for thirty days, and literally had little or no energy to do anything. Of course what the doctor isn't aware of, is my role in my mom's daily existence. He may not acknowledge that it is me keeping her healthy, but I don't need his validation.

Toward the end of the appointment, the doctor asked what we were doing for the summer. He wanted to know if we were going anywhere! I literally wanted to say.... are you kidding? But instead, I just answered that it is hard to travel given my dad's condition. The doctor has no idea that my life is a train wreck or the daily struggles that I face. Nor does he know that I haven't had a day off since my parents moved into my home in December of 2021. Imagine NOT ONE day of a break! I truly think the average person would have lost it by now. Caregiving is hard enough, but I am caregiving under the most difficult of circumstances. I truly do not know how one recovers from the catastrophic loss I am living with. 

Some days, I am sad. Some days I am angry and other days I am indifferent. On another note, tomorrow is going to a challenging day, as I have both of my parents at home and a team of people coming to install a new furnace. They were supposed to come on Saturday, but I received a call this evening, saying they could come on Thursday instead. I want to get it over with, but when I say there is no peace, no down time, I am not kidding. As my therapist says.... I live in constant hyper alert mode, which I know will have long term ramifications on my health. In so many ways, I am a walking case study on loss, grief, and trauma. 

Tuesday, April 23, 2024

Tuesday, April 23, 2024 -- Mattie died 760 weeks ago today.

Tonight's picture was taken in April of 2004. Mattie was two years old and that day I took him the Reston Zoo. I absolutely loved this Zoo, because it was small, very hands on, and designed for the younger kids. Mattie was fascinated by all the animals and enjoyed walking and running around, feeding the goats, the pony rides, and the wagon ride into the fields to see more of the farm animals. Life with Mattie was just that.... full of LIFE! Everyday was an adventure. 

Quote of the day: Not the least hard thing to bear when they go from us, these quiet friends, is that they carry away with them so many years of our own lives. ~ John Galsworthy

Just when I think life can't get anymore hysterical, today topped the list. I was running around to get breakfast made and my dad washed and dressed, because we had an air conditioning inspection at 10am. Twice a year, we pay for a service to check the heat and air systems in the house and change air filters. The technician who came was a lovely man. A young fellow, but he could see I was caregiving for both of my parents. He then told me that his first career was that of a nurse. He was inspired to do this because his grandmother had dementia. After several years, he burned out, and switched professions. What I quickly deduced was he was insightful enough to know I was balancing a lot and on my own. 

He walked me through each system today, he explained the air filters to me, and told me that he would be happy working with me every six months to keep the systems up and operational. So Elijah is now my heating/cooling angel! I need as many angels in my corner. He offered this to me because he said, literally, you are balancing too much alone and he wants to take this worry off my plate. Mind you this service comes with the contract I have with the company, so I am not paying extra for his visits. But what this means to me, is he is a sensitive man, who wants to help me. 

Unfortunately Elijah brought a major issue to my attention today. For those of you who have followed the blog for years, know that when we moved into this house, it was a nightmare. The house needed extensive repairs, so much so that we had the trades living in our house for three months. One of the things on the future radar scope was the furnace. Today, the worst news came to me, I no longer could wait. The whole furnace and AC condenser needs replacing. Dear Lord, how much more can Vicki take? 

I was in a rip roaring mood all day. When I went to pick my dad up at the memory care center, it took him about 25 minutes to come out! I knew something was up. The issue? They took my dad to the bathroom, but no one stayed in the bathroom with him. BIG mistake. He clearly pooped on himself and his clothes. They tried to clean him up but by the time he got to the car, he reeked. Naturally when I got home, I sent an email to the program director.

Soon there getting home, the person selling me a new furnace showed up. I was juggling him, everything else, and trying to prep dinner. Honestly, I ask myself, how I survive each day? I have no answers, truthfully. Needless to say, I will have workmen here starting at 7am on Saturday, and they told me to plan for a full day of installment. God give me strength, because I range from extremely angry to disillusioned and upset. 

Monday, April 22, 2024

Monday, April 22, 2024

Tonight's picture was taken in April of 2004. Mattie was two years old. He absolutely LOVED his frog sandbox, which sat on our deck for years. I can't tell you how many toys Mattie had in that box! When Mattie died, we put the frog sandbox in our commons area. I never thought that other kids would use it. When I first saw kids using Mattie's box, I felt like someone had stabbed me with a knife. It pained me to see other kids in the box, playing with his toys, and was even more fascinated that parents would allow their kids access to something that did not belong to them. However, over time, that feeling of anger and pain, turned into Mattie's joy and happiness being passed along to other children. I assure you that switch in my thinking was not automatic and it did not come easily. But I did get there. I also rationalized that others playing with Mattie's box, could never diminish or erase Mattie's memory in my mind and heart. 

Quote of the day: Every morning, I wake up and forget just for a second that it happened. But once my eyes open, it buries me like a landslide of sharp, sad rocks. Once my eyes open, I’m heavy, like there’s too much gravity on my heart. ~ Sarah Ockler

It was another busy day. My mom's physical therapist was here at 10am. I had my dad home with us today because I had a doctor's appointment at 3pm, and I couldn't juggle his afternoon pick up at his memory care center and get to my appointment in time. While my mom did her therapy, I was on the phone with insurer. I tell you I am getting quite an education in long term care insurance. 

I had to fax a document to my dad's health insurer today. I literally left my parents in the car for less than ten minutes. When I got back into the car, I smelled something! I knew that meant my dad had to go to the bathroom. He did not want to go back home, so I proceeded to take them to Starbuck's as they requested. However, despite my best efforts, my dad had already pooped in his pants, and I had a big clean up job to do! This issue is becoming a daily routine, and I assure you it is less than pleasant. Don't worry about my dad. Seconds after this happens he has NO recall of what just transpired. It protects his dignity, which is good, but it is a big WOW for me. 

I learned a few months ago that my doctor, who I have been seeing since I was about 25 years old, is retiring. Mind you she is my age! So I am still stunned she is retiring. I met with her today for my annual physical. I got my blood test results back and my cholesterol is still high. I was very dejected going into this appointment, as I have lost 20 pounds and restrict things like ice cream, cheese, and bread. Yet despite that the test still showed a high LDL (the bad cholesterol). Make a long story short, I wasn't looking at my numbers in context. In comparison to where I was last year at this time, my LDL is beautiful. It has dropped significantly and it has even decreased from 6 months ago. So though I thought I wasn't making progress, I am. I am so inundated with my parent's care that I can't even see the bigger picture of my own. 

However, when I told my doctor about my ear pressure and fluttering, she did not like what she was hearing. So I have to schedule a brain MRI soon, to rule out issues like aneurysms. My paternal uncle died from an aneurysm at an early age, so of course I will be compliant and do the test. Given my migraines, I have had many brain MRIs over the years. But now everything I experience is far more daunting, far more frightening, because I am doing it alone. I am alone!

When I was chatting with my doctor about her retirement, I literally began to cry. This is someone I have grown up with! Mattie loved my doctor too. I remember taking him with me one day for an appointment and he told me he thought the doctor was 'cute.' My doctor is retiring because her close friends invited her to live near them in Hawaii. Since my doctor is like me, without a child and husband, she felt she needed to think carefully about her future. She doesn't want a future alone, and as she was talking, I absolutely understood wholeheartedly the decision she was making. She has devoted 25 years to patient care and I told her this is now her time. That said, I don't like change on a good day. Now forget it! In any case, she has made an appointment to see me in the Fall, so we can continue to chat, check in on how I am doing, and potentially meet the doctor who will be taking over her patients. The loss just keeps on coming. 

Sunday, April 21, 2024

Sunday, April 21, 2024

Tonight's picture was taken in April of 2003. Mattie was one year old and FULLY ON! He kept me on my toes and together we learned and navigated the world together. I absolutely LOVED Mattie's smile and energy. We were very similar in personality and with Mattie's death, a piece of me died as well.  

Quote of the day: Like a bird singing in the rain, let grateful memories survive in time of sorrow. ~ Robert Louis Stevenson

I would say that both of my parents require a great deal of napping and sleep. If my dad had his way, he would sleep the day away. Of course I won't let that happen because it isn't good for his mind or body. I really think the key to managing the nightmare of Alzheimer's is constant stimulation. Which is why I enrolled him in a memory care day program in 2022. I just couldn't manage his needs on my own. After breakfast today, both of my parents napped. While they were sleeping I did laundry, worked on the Foundation newsletter, and vacuumed out my car. 

Every Sunday I take my parents out to brunch. When I returned, I headed right back outside. I planted eight basil plants, took out a hand saw and removed most of a dead pine shrub, and then planted irises that were given to me as a gift. I spent about two hours outside. Being outside is the only time I really can get away from the constant demand inside my home. Therefore it has become my therapy. I find picking up sticks, pulling weeds, and doing gardening work are about the only things right now keeping me sane. 

Saturday, April 20, 2024

Saturday, April 20, 2024

Tonight's picture was taken in April of 2003. Mattie was one year old. He was beginning to toddle around by holding onto furniture and our hands. Mattie used to love looking at this photo as he got older! In particular, if you look at the photo below, you will see what I mean. This photo was literally the before and the one below was the after!

This photo was taken in May of 2006, three years after the one above! Look at that big smile... he was proud that he was growing taller!

Quote of the day: My little dog—a heartbeat at my feet. ~ Edith Wharton

So much in life is the little things. This afternoon, I had to create more daily checklists for my dad. I started checklists about two years ago with him. Without a checklist, my dad will brush his teeth about five or six times in one morning, use mouthwash like water, and shave multiple times. The checklist helps him keep track of his bathroom activities. I think the checklist helped him for a year or so, but now his mental decline is so significant. Even with the checklist, he forgets to check it, and does things repeatedly. I now have to regulate toothpaste and mouthwash, otherwise, he will go through a tube/bottle in a week! My dad's decline is noteworthy, sad, and frustrating at times. As I was printing out daily checklists for May, June, and July, I naturally reflected on my dad's Alzheimer's disease, but I also reflected on my marriage.

Each time I print out a season of checklists, I say to myself... maybe next season will be better for me. So far I have survived the fall, winter, and now moving into the spring. It is funny how the mind works, thinking and hoping that things can change for the better. But at the end of the day, I am a realist. I am not sure what keeps me going day to day. 

I took my parents out to lunch today. My dad had a full meal. When we got home, I got him toileted and then back in his recliner. Within minutes he said..... do you think we should go out for a meal so you don't have to cook? The sentiment is lovely, but honestly I lost it. I had just finished a full journey out that I find it absolutely incredible he did not remember traveling in the car, he did not remember eating, he did not remember our conversation, and basically it is very demoralizing. Naturally I know my dad can't help it, but it is a disease that can make the caregiver feel beyond unstable and given my current situation, I do not need any help. 

Friday, April 19, 2024

Friday, April 19, 2024

Tonight's picture was taken in April of 2005. That day we took Mattie to the National Arboretum. I loved going there around Mattie's birthday! In fact, my joke with Mattie was that the azaleas bloomed in order to celebrate his birthday. Mattie loved hearing this and we all enjoyed exploring this amazing natural space!

Quote of the day: Everyone is taught that angels have wings. The lucky ones of us find that they have four paws. ~ Jury Nel

After dropping my dad off at the memory care center today, I headed to the grocery store. However, before I got there I passed a Lowe's. I have been debating about planting flowers in our pots. It is a large undertaking, because we have pots all around the property. Typically in the past, we would do one shopping trip, come home, unload and plant. I do not have the energy for ONE big shopping trip.

Today I decided to stop at the Lowe's garden center and see what they had available. It was a great day to shop because it was a weekday and it was frigid out for spring. Therefore, I wasn't fighting crowds and could instead walk through the nursery and explore what they had. I committed today to purchase items for the front of the house. As you can see I got an orangey Gerber daisy for the front door area. I am a big daisy fan. To me they are happy flowers!

The previous owner of our house, left us this flower pot in the front of the house. I decided to plant a pink Mandeville and variegated vincas. Both should be easy to take care of and provide that flowing over the pot look that I am trying to achieve. 

Outside our side door, I planted a Shasta daisy and petunias. I absolutely love petunias. These flowers love the summer heat and they keep producing throughout the summer months. Planting these today reminded me of our townhouse in Washington, DC. I can't tell you how many petunias I planted there over those twenty plus years. 

I spent about two hours alone this morning on my grocery store and Lowe's trip and then another hour outside this evening planting. This may not sound like a big deal, but it was....... as I am rarely alone! 

Thursday, April 18, 2024

Thursday, April 18, 2024

Tonight's picture was taken in April of 2004. This was right before Mattie's third birthday party! The theme that year was Blue's Clues. Mattie and I would decorate and brainstorm for days. I remember hiring an undergraduate student who was a part time magician. He did a great job at the party and even brought his pet bunny, Hobbes. Mattie had a great time and notice we were both dressed in orange. Mattie loved that color. No surprise that it became the official color of Mattie Miracle. 

Quote of the day: Absence is a house so vast that inside you will pass through its walls and hang pictures on the air. ~ Pablo Neruda

Last night I must have been so tired, that I fell asleep with the lights and TV on. At around 3am, I came to consciousness, was disoriented, but with it enough to shut everything off! I took my dad to his foot doctor appointment this morning. He sees this doctor every 9 weeks. When the doctor saw my dad's legs today.... he said, what's going on?! My dad is having another allergic reaction to the second statin drug we have tried. He was initially doing well on it, but after about two months on it, the intense itching started up. Given the significant nature of my dad's dementia, he can't help himself.... so he scratches and scratches! There is nothing I can do to prevent this, I have tried everything, including bandaging up his legs. 

In any case, about two weeks ago, I contacted his doctor and he agreed, we should stop the statin and try to reset my dad's system. Thank goodness I put two and two together and realized this was a drug reaction, otherwise, my dad would be ripping his skin off causing an infection. That happened with the first statin drug he was on, so I learned my lesson! 

Overall, it has been quite the day! My dad pooped in his pants twice and it was a big clean up job each time. On top of this, something is wrong with my car. So it has to go in next week. By around 4pm, I had just about had it! I had it with cleaning, meeting demands, and feeling abandoned and alone in life, so the only thing I could think of doing was to go outside. Since Sunny died, I have yet to take a walk. I have no interest in doing that now without my Sunny boy. My therapy is grabbing our big garbage bin and dragging it around our yard. I pick up branches, debris, and today also took on weeding. Pulling out weeds to me is very therapeutic! With my yard, there is a lot of therapy to be had, because removing weeds is like a full time job around here. 

I can't believe tomorrow will be Friday. So many people look forward to Fridays. I dread it. Because I know Saturday and Sunday have less structure and I have my dad in tow, which makes things far more complicated for me. But overall, what I struggle with is facing my life without my other half. My life has been very intertwined with Peter's. He has been a part of my life since I was 19 years old. It would be one thing if he died. That would be hard to face and accept, but my reality is far more painful than death, because at least in death, I would know that I was loved until the end. 

Wednesday, April 17, 2024

Wednesday,  April 17, 2024

Tonight's picture was taken in April of 2003. Mattie was one year old! I think Mattie's favorite place to be was outside! It did not matter what the weather was like... he preferred fresh air, space, and seeing signs of nature. Though I did not share this love at first, through being Mattie's mom, I came to appreciate the beauty that only nature can provide. 

Quote of the day: The one best place to bury a good dog is in the heart of his master. ~ Ben Hur Lampman

Today was another marathon day. After dropping off my dad at his memory care center, I came back home and greeted my mom's physical therapist and got her set up for her session. I then left them to work, while I drove to the bank for an appointment. I went to meet with a banker about Mattie Miracle's account. As I was sitting down with the banker, she looked up the Foundation in the State Corporation Commission (SCC) website. In Virginia, you create a nonprofit by filing "articles of incorporation" with the State Corporation Commission (SCC) and paying a filing fee annually. In any case, our re-instatement with the SCC was granted in January of 2024. Yet when the banker went onto the SCC site she couldn't find Mattie Miracle. If she couldn't find us on the site, this would be a huge problem for us and I wouldn't be able to continue with my bank appointment. 

I truly began to panic! It doesn't take much for me to go from zero to 80 within seconds. Any case, while she continued to search, I pulled out my cell phone and I showed her the image I had of our re-instatement. What was the problem? She did not enter our full name... The Mattie Miracle Cancer Foundation. She forgot the "The." Needless to say, I will never forget that moment in time or the fact that the full name has to be entered into the system. Any case, after that 45 minute appointment, I headed home. 

I juggled phone calls, and got more information about my mom's long term care insurance policy. All I can say is it is almost 11pm, and I am still working! So I am signing off for today, as I am very tired. I long for a day of rest and would love just one day where I wasn't facing a crisis or putting out a figurative fire.  

Tuesday, April 16, 2024

Tuesday, April 16, 2024 -- Mattie died 759 weeks ago today.

Tonight's picture was taken in April of 2002. Mattie was about a week old. We were home from the hospital and as you can see I was exhausted. Trying to recover from a c-section, having a bladder tumor removed during the c-section, and dealing with post partum depression. None the less, Mattie and I found our way together. He absolutely loved napping with me that first month, and remember that overall Mattie was NOT a napper. Even as a baby! 

Quote of the day: People leave imprints on our lives, shaping who we become in much the same way that a symbol is pressed into the page of a book to tell you who it comes from. Dogs, however, leave paw prints on our lives and our souls, which are as unique as fingerprints in every way. ~ Ashly Lorenzana

May day started at 5:15am. I had to get up that early in order to get my household ready for the day, so I could leave at 8:45am, to get to my doctor's appointment. I was gone from home for about two hours, and in that time, I went to the hospital, got gas for the car, checked the Foundation mailbox, picked up scripts at CVS and stopped at the grocery store. When I do not have anyone in tow, I can move like the wind. In a way, this two hours was very freeing, despite filled with chores. 

Once I got home, more chores and tasks began. One of the many things I am tackling is my mom's long term care insurance plan. I am getting a total run around from the company, and have been dealing with the application process since January! JANUARY! I am familiar with her insurance plan, since we activated my dad's (a companion) plan in 2020. In any case, I decided to take a gamble, and I reached out to my contact in Los Angeles. She worked closely with me when my dad was so sick and needed caregiving and home health care (nursing, OT, and PT). Mind you my parents have been living in Virginia with me for almost three years now. So it would be plausible that this contact in LA wouldn't remember me or even be working for the same company. 

Not only is she still working for the home care company, she is now the director of finance. I am NOT at all surprised. She is bright, efficient, professional, compassionate, and KNOWS her stuff. I wrote her a long email today explaining my issue with the long term care insurance company and within minutes she wrote me back. She actually knows my parent's policy information better than the long term care insurer. Hysterical no? Make a long story short, she is reaching out to the insurer on our behalf. She doesn't need to do this! We are no longer clients of her company, and I know she is a busy professional. There is no benefit to her by helping us. But this tells you the strength of her character and her commitment to others! She is another angel in my midst. Someone who goes above and beyond in their job. Because helping and supporting people are tantamount over numbers and money. This woman is a blessing in my day. Any one who wishes to help me, listens to what I am facing, and wants to be part of the solution, is a TOTAL gift to me. 

I loved this home care agency so much that it was painful to move my parents East. I truly trusted this agency, its administrators, and their loving and competent in home caregivers. To this date, I am still in text message communication with my dad's two caregivers. They were quality and loving women and believe me I am a tough job when it comes to caregiving. But if I were sick, I would welcome them caring for me any day. That is how much I appreciated them. 

I do think people attracted to caregiving are a special lot. It is a calling, not a job, and as such, we understand each other, and if a need arises, our reaction is WE WANT TO HELP or at least lend emotional support!

Monday, April 15, 2024

Monday, April 15, 2024

Tonight's picture was taken in April of 2002. This was newborn Mattie, just days home from the hospital. Honestly at that moment in time, I did not know if I was coming or going. I was recovering from a c-section, had post-partum depression, and as a new mom, I had no idea what I was doing. However, the beauty of being Mattie's mom was I rose to the challenge and for that I will always say he was my greatest teacher in life. 

Quote of the day: A dog will teach you unconditional love. If you can have that in your life, things won’t be too bad. ~ Robert Wagner

Some days I have no words! Today was just one of those days. I was dealing with one issue, after the other, after the other. Frankly I haven't had a minute's peace since I moved into this house and now almost living here for three years, my life has been permanently altered in a catastrophic way. 

At 4pm, I was interviewed by a reporter for a childhood cancer article. Truthfully, I had a hard time focusing, as internally I felt anxious, angry, and sad... ALL at the same time. Yet I got through the interview and the reporter said I gave her a lot to think about. Things she hadn't heard before. I chalk that up to Mattie working his magic through me. How I wish Mattie were alive, as he would be my best ally. 

I have no idea how I made and served dinner tonight. But I did. As I was about to sit down, my mom was going to head into a lament. I literally LOST it. I told her she had two choices tonight, one she could keep quiet and change the subject, or two, she could go upstairs. I was in no mood to absorb any more commentary, as I have enough rolling around in my head. 

Tomorrow morning, I have to get up at 5am, in order to get my chores done, my dad showered, dressed, and downstairs, before I run to my doctor's office for my yearly bloodwork. Of course when I get home, I will once again hit the ground running with more chores and issues to resolve. All I can say is God give me strength, because some days I don't see a path forward whatsoever. 

Sunday, April 14, 2024

Sunday, April 14, 2024

Tonight's picture was taken in April of 2004. Mattie was two years old and for his birthday party, we put up paper and activities all over the front hallway wall. Mattie and the kids loved it! I left it up for several days and as you can see, Mattie continued to go to the wall and create. He was a busy fellow and the one thing Mattie always did was keep me on my toes. It took a lot of energy on my part to meet Mattie's needs for stimulation, activity, and exploration. At times he pushed me out of my comfort zone, but I would say, we learned a great deal from one another. 

Quote of the day: We are our pet’s Heaven and just because their physical body is no longer alive, it doesn’t mean their soul loves us any less. We are loved from beyond, and always will be. ~ Lyn Ragan

Today was quite the day! When I came downstairs there was a terrible beeping noise. It did not stop and just continued to get worse. I deduced it was from our alarm system. I frankly did not know what to do! I have many of these moments when I say..... I HAVE NO FREAKING CLUE HOW TO HANDLE THIS! I could flip out, but it would serve no purpose, because I have to be the adult on duty 24/7! 

I decided to get on the computer and do a live chat with our alarm company. I got connected to a lovely man. He helped me for 40 minutes. He was telling me to do certain things, and my response was.... HOW DO I DO THAT? He had great patience and with his assistance, I figured out the problem and corrected it. In the past several days, I have had to reach out to many professionals through live chat and each one, was very helpful. It is hard tackling things I don't know, but I am trying on manage each issue that arises. 

Last night, my mom and I watched a 1947 movie, Great Expectations. I had never read this Charles Dickens novel, but my mom can recall going to the movies with her mom at age 10 and watching this movie. It was fascinating hearing her recall her trip to the movies as well as my grandmother's reaction to the movie. Dickens' story is powerful. If you have never seen the movie, it is worth the investment. It has a huge moral message. What I took away from this tale is that life is filled with expectations, but sometimes what we expect and want isn't always what it is chalked up to be. Specifically what matters most in life and the source of happiness does not come from improving one's social class, wealth, or status. We all may want to re-invent ourselves at times, but this transformation will never be successful if we find ourselves compromising our core values, our loyalty, and love for those who matter most in our lives. 

Trailer to the 1947 movie:

Saturday, April 13, 2024

Saturday, April 13, 2024

Tonight's picture was taken in April of 2005. Mattie was three years old! This was a typical sight in our living room. Train tracks and set ups every where. Of course the one tell tale Mattie sign was.... the sippy cup of milk. It was like his security blanket. That cup came with us on every outing, no matter the weather! 

Quote of the day: The world would be a nicer place if everyone had the ability to love as unconditionally as a dog. ~ MK Clinton

I would say that my day to day existence is very, very difficult. Trust me I have lived through difficult before with Mattie's diagnosis and death. So if I am saying, I am struggling, that means there is a problem. My tolerance level for problems is high. But the problem with my existence, not unlike Mattie being ill, is I can't control my life (or at least any aspect of my day)! What I do know is that for the foreseeable future, I am living in hell. My days are filled with chores, worries, stress, meeting constant needs and demands, and of course living with great upset, heartache, and uncertainty. 

It took a lot out of me to face and cope with Mattie's death. It is hard to accept that I am a woman living life without raising a child and having the ups and downs of all the typical things that come with that beautiful responsibility. This alone has not been an easy adjustment, but I took comfort in the fact that I was facing this impossible journey with my husband. I was not alone. Now I continue to face the loss of Mattie, but I am navigating that and this additional loss. It took a long time to accept that I could have any sort of future without Mattie, and that was bad enough. But this current reality is a nightmare on top of the already given nightmare I live with. 

This morning, I was juggling chores, and a ton of linens. I change the beds every two weeks and mind you my dad sleeps with 16 pillows on his bed. So just changing pillows is a feat. My dad's physical therapist came over this morning. She is a lovely young woman and she adds a bit of life to our lifeless house. By mid-afternoon, my mom wanted to go out, so I took them both to Starbucks for a snack. 

In all reality, neither my mom nor I can handle interacting with people. We have no interest in small talk, conversation, or hearing about the issues and problems of others. This is counter to how we typically operate. However, I know this feeling all too well. It is the reaction to trauma. Which is why I am not as surprised by how we are feeling. It is a known path and journey to me. If I were to focus on my true emotions for too long, I would get sad, depressed, and feel hopeless. 

This evening I received this meaningful image from my friend Denise. Perhaps I am brave, I do not know. What I do know is that if I give up, my parents who are dependent on me, would suffer. So with that, I find the inner strength to provide a stable and as loving environment as I can. But it is very hard to keep giving, and giving, and yet I know that no one in this equation can think, care, or worry about me. 

Friday, April 12, 2024

Friday, April 12, 2024

Tonight's picture was taken in April of 2004. Mattie was two years old and that day we took him to the National Zoo. It was a beautiful day and Mattie enjoyed being outside and exploring the terrain and the animal life. This was the incredible life I had with my "Mattie Moo." Now as I look at this, it seems like another life, NOT mine, as happiness and a future are just not attainable for me. 

Quote of the day: To call him a dog hardly seems to do him justice, though inasmuch as he had four legs, a tail, and barked, I admit he was, to all outward appearances. But to those who knew him well, he was a perfect gentleman. ~ Hermione Gingold

This morning, when my dad came downstairs for breakfast, he found birthday cards, cookies, and gifts in front of him. My dad turned 89 years old today! 

The sad part is even just after opening all of these things, he had NO memory within minutes of any of these items. Alzheimer's is truly a horrific disease. 

Guess what caught my dad's attention first!? If you guessed the cookies, you are correct. He desperately wanted one, so after he had his breakfast, he ate a big chocolate covered chocolate chip cookie! 

We went out for lunch today to celebrate my dad. Cheryl, our server, who we visit with each Sunday, decorated the table, got my dad a head band, balloons, and gifts. Cheryl made it special. I truly feel like I am falling apart from stress, so having Cheryl's kindness and her willingness to decorate and make today special are indescribable gifts to me. 

All the restaurant managers came over to wish my dad a happy birthday. By the time they finished, each manager comped different parts of our lunch. I was deeply touched. The funny part is they said to me.... I deserve it, and it wasn't my birthday! 

A close up of the birthday boy!

I tried to make it a special day for my dad, but my mom was a bundle today. She got fixated on taxes that are due on Monday. My parent's accountant and I have VERY different personality styles. I am tightly wound, a solid type A, and he is on the other end of the spectrum. I alerted the accountant two months ago that I wanted the information, so I could start working with my mom on her taxes. My parents pay taxes quarterly. So I don't deal with this fire drill once a year, but FOUR times a year. 

I have gone from a being a wife who never worried about check books, managing a household financially, or dealing with taxes, to a woman who now deals with everything all at once. When I tell you that some days I dread getting out of bed, I am not kidding. I am a figurative firefighter. Each day is a different crisis, another fire to put out. My mom couldn't focus on anything else at this birthday lunch other than taxes. She called the accountant at the table on the half an hour. Finally I told her to just STOP. He clearly wasn't answering her calls. 

When I got home, I made my way to my mom's computer and navigated on the web to establish on-line tax accounts so that we could pay electronically. This will be easier for me to monitor what has been paid out and how. I have no idea if I estimated correctly, but frankly I wanted to address this ASAP because I couldn't handle my mom's anxiety, fear, and hysteria one more minute. 

Thursday, April 11, 2024

Thursday, April 11, 2024

Tonight's picture was taken on April 4, 2009. Mattie was celebrating his 7th birthday party in the child life playroom. In addition to friends from school coming to the hospital to celebrate the occasion, Mattie received many visits from his friends in the hospital. Pictured with Mattie here is Jey. Jey worked in radiology. Mattie had challenges with the radiology department, as most of the techs were used to working with adults, not scared and traumatized children. We were introduced to Jey early on and he adopted Mattie. Jey would call Mattie his "little brother." In fact, Jey once took on a radiology tech, who thought that Mattie was sassy and difficult. Jey educated this tech about Mattie's journey and what he endured. Needless to say the tech had a MAJOR change of heart! On the day that Mattie died, Jey came to our hospital room and personally escorted Mattie's body to the hospital morgue. He said no one else was going to take his "little brother." I will never forget Jey, the beautiful connection he shared with Mattie, and what a huge difference he made in our lives. 

Quote of the day: I'm a great dog fanatic. My own dog died a little while ago and I take it very personally when things die—it's a major offence. ~ Clive Barker

Each day for me provides different emotional challenges. When you are a two some for 35 years, you learn to take on certain roles, and then lose focus on others, because you know your other half has them covered. We all naturally gravitate to certain tasks and responsibilities, given our strengths and interests. Now that I face life alone, I have to focus on tasks that I haven't had to do all my married life. It can be daunting, scary, and honestly can bring about fear and panic. Yet I try to persevere, figure things out, and stabilize a very unstable situation. 

Some days I question why am I getting out of bed? But the answer always is.... my parents rely on me. They need my help. So no matter how I feel, I function. My mom and I had several phone calls to make today and in one of our conversations, the person on the other end of the phone told us a story about what happened in his life. What happened isn't the point, the point is that he said what got him through such a difficult time was knowing people relied on him and that all he thought about was.... maybe tomorrow things will be a little better, a little less difficult. Though this conversation was a complete tangent to the purpose of the call, I found what he was saying very interesting. I know I can't think about much more than a day ahead. My brain and heart just can't go there and I also admit that for the most part, I prefer to isolate myself. I do not have the energy or emotional where with all, to absorb the presence of other people. 

Tonight as I sat down to write this posting, I noticed that I received a comment on last night's blog posting. The posting is below. I can't tell you how much it meant to me to received this message from Esther. Esther and I have NEVER met one another, nor have we ever exchanged emails. Yet, she has been a long time blog reader, as we are bonded together by the loss of a child to osteosarcoma. Needless to say, her words moved me. Here is a stranger in my life, who through my words on the blog has gotten to know my character, what motivates me, what I stand for, and the love I have for Mattie. All I can is WOW. Esther's words struck a chord in my heart, and it means a great deal to me that good thoughts and prayers are sent to me across state lines. Thank you Esther. I am deeply grateful to know that Mattie's blog means something to you and that you took the time out of your day to let me know.  

---------------------------------------

Dear Vicki,

I have read your blog for years now. I found you during my niece's battle with osteosarcoma back in 2011. Like your sweet Mattie, she left her cancer -ridden body in 2012 and became one of our angels. I have followed your blog intermittently as I admire you greatly. You are a remarkable human being and you owe nothing to your readers when it comes to sharing your privacy. You share as much as you want and keep the rest for you, no rush, no pressure. You are precious and I understand your heart as you care for you parents, they gave us life and we owe it all to them. I am currently caring for my sister who was placed in hospice care, so I know all about giving it all to those we love. You are definitely resilient and I know you won't give up, because that is not who you are, and we can only be who we are. Take breaks when you need to, vent all you want here, and know that many friends, and strangers like myself, are cheering you on and surrounding you with good thoughts and prayers.

Sincerely,

Esther 

Wednesday, April 10, 2024

Wednesday, April 10, 2024

Tonight's picture was taken on April 4, 2009. Mattie celebrated his 7th birthday (and last one) at the hospital. Mattie was very excited and spent hours decorating the child life playroom, as several of his friends were coming after school for the party. As you can see, Mattie had one of his favorite things... vanilla frosted cupcakes! As he bit into it, he got a face full of frosting. Such a happy face and moment in time!

Quote of the day: I believe all animals were created by God to help keep man alive. ~ Iwao Fujita

Today marks three months since Sunny died. I miss my companion and walking buddy. I have not taken a walk since he died. 

While looking over the blog, I noticed that someone left me an anonymous comment last night asking me to talk about my pending divorce and what is happening with Peter. I absolutely can appreciate these questions and why you may want to know more. Typically my life has been somewhat of an open book for the last 15 years, as I do try to write and reflect on my happenings, thoughts and daily feelings. 

It has been very hard for me not to have this outlet to express my angst, anger, frustration, and hopelessness here. It is my hope that some day I will be able to talk about all of this, but I do not see that happening anywhere in the near future. 

All that said, you can imagine my level of intense devastation, since I have known Peter for 35 years. I will leave it at that. I do appreciate the question and I ask for patience with me as I face yet again the impossible. Keep me in your thoughts. 

Today was not a good day. But that said, I have been going to weekly therapy since December. Though I can't see it, the therapist sees the progress I am making and commended me for taking on one chore, after the other, and not cowering in the corner or giving up. It would be understandable if I did, but my parents rely on me, and though I have in some cases no idea how to tackle an issue, I take a deep breath and figure it out. I have had to figure out practically everything over the last 7 months. Perhaps that is my nature or my character. I may not have had a career, with a big title, or large paycheck, but that doesn't really measure the true strength, intelligence, or courage of a person. 

The one thing that can be said about me, all my life, is my persistence, determination, and convictions. Which are all traits I needed in order to complete a Ph.D. program. Getting a Ph.D. is not about brilliance, trust me! It is about being able to survive, to be humble, and not give up. As there are many obstacles placed in front of a Ph.D. student, to make you stumble and even crash a burn. Like I wouldn't let that happen when I was a student, I try to pull on that inner resilience to find a way forward now. That said, I may be reaching my threshold on resilience and perseverance, and some days I ask.... just how much more can I handle?

Tuesday, April 9, 2024

Tuesday, April 9, 2024 -- Mattie died 758 weeks ago today.

Tonight's picture was taken in June of 2009. My friend Christine, hosted Mattie's 7th birthday party in her backyard. As you can see, the theme was the ROACH. It was the big joke between Mattie and me. He knew I hated bugs, and that inspired him to like them even more. Check out that roach cake and Christine's husband, James, even dressed up in a roach costume. It was a great party, and even Reptiles Alive was there and did a show and a meet and greet with many of their creepy crawlers! It was a day to remember!

Quote of the day: I heard somebody define heaven once as a place where, when you get there, all the dogs you ever loved run to greet you. ~ Robert B. Parker

I received this photo today from Chicago! This presentation was taking place at the Association of Pediatric Oncology Social Workers conference. If you look closely you will see Mattie Miracle's logo and our tag line.... It's Not Just about the Medicine. Mattie Miracle is participating in a nationwide study with a research team from Nemour's Healthcare (in Delaware), NIH, and Momcology. This is the first Psychosocial Standards implementation study of its kind to assess family members' perspectives as we try to understand and prioritize the 15 Standards of Care. We are grateful for a $115,000 grant from the Andrew McDonough B+ Foundation to conduct this study! 

Meanwhile, this morning, our landscaper came over to manage the water leak in our backyard. He gave me a high five, that I shut off the water this weekend and controlled the issue. It turns out it wasn't a broken sprinkler head, but a hairline fracture in one of the pipe in the irrigation system. We have lived in this house since 2021. Therefore, I have known this fellow for three years now. I have always liked him as a person. He is efficient, kind, and professional. 

Today however, we got to talking about personal issues. I have only let a handful of people into my current soap opera and daily drama. This is a personal decision to protect myself and truly it is what I need to do at this point to get through the day. However, what I learned today was more about the personal life of the man before me. Like he said to me, I would say right back to him. Looking at both of us, you would never know the weight of the world we carry on our shoulders. How cruel life has been to both of us, and yet, despite these horrors, we both continue to do our best to be kind and thoughtful to those in our lives. 

He and I did not talk for very long, but it was long enough to know we were on the same page. Honestly this is a hard phase of my life to discuss, and unless you have lived a similar trauma, I most likely will not feel comfortable sharing much. Those of us who have these experiences seem to be able to spot one another immediately. I find that fascinating in and of itself. I am not sure why this conversation made me feel better, but it did. I felt heard, understood, and supported. 

Monday, April 8, 2024

Monday, April 8, 2024

Tonight's picture was taken on April 4, 2009. It was Mattie's 7th birthday, and we celebrated it at the hospital. Mattie was very excited because several friends were coming after school to celebrate. To get ready for the party, Mattie spent hours decorating the child life playroom. Pictured with Mattie, is Brandon. Brandon and Mattie were diagnosed around the same time. Though there was a ten year difference between these boys, they got along beautifully. Brandon was a wonderful friend and companion to Mattie and Mattie truly trusted him. Brandon came to the birthday party and assisted with activities and helped Mattie interact with his friends. I can't emphasize how crucial a role Brandon played, because by this point in Mattie's treatment, he felt different and he knew he was different. That difference could cause and wreak havoc in friendships. I learned a lot about friendship from watching Mattie and Brandon. 

Quote of the day: Near this spot are deposited the remains of one who possessed beauty without vanity, strength without insolence, courage without ferocity, and all the virtues of man, without his vices. ~ Lord Byron

This morning after dropping my dad off at his memory care center, I drove to the city, for my dental appointment. Each time I visit the city, I am saddened by what I see. This huge homeless encampment is about a block from where I used to live. The amount of graffiti, garbage, and tents is overwhelming. In addition, many of the restaurants and sandwich places all around the university campus are now boarded up. They all went out of business. The city is slowly becoming a ghost town. This is not progress!

When I arrived at the dentist office, my hygienist, Annie, came out soon there after to greet me. She gave me a big hug! She knows what I am balancing and she also cares for my parents. On my dental visits, she turns down the lights in the room, she puts on the Rat Pack (which I love to listen to), she has a diffuser going, which reminds me of a spa, and props me up with pillows. Some people go to the spa, I go to the dentist. Since my parents moved in with me in December of 2021, I would say that was the beginning of when, I lost the ability for anyone to take care of me. 

In many ways I am a private island, meeting peoples' constant needs, demands, listening to problems, laments, and struggles. I have become the jack of all trades and like a sponge, I absorb everyone's woes. I assure you it is a very difficult existence living this way, knowing that no one is looking out for me. But instead, if something happens to me, this whole equation collapses. 

It is funny, when we went out to brunch yesterday, our server, Cheryl (who we see every Sunday) was commenting on Easter. She is the one who encouraged me to dine out rather than cook. What she said yesterday caught my attention. She said that I am constantly meeting everyone else's needs, that cooking a big dinner, hosting it, and cleaning up from it, would be just too much for me right now. It is fascinating how astute a comment that was. In so many ways, Easter came and went, and my life remains the same. 

Similarly today was a solar eclipse. The beauty of this eclipse is that many people could see some percentage of its path of totality. This is a big deal. I heard about it on the radio and TV, and people around us were a buzz about it. For me, the world could spin right off its axis, and I would be oblivious. Mainly because this is the deep level of pain and heartache I live with daily. My friend in cancer, sent me amazing photos throughout the day. This was one of Ilona's great images. 

While leaving Starbuck's with my mom today, to pick up my dad, two young women were in the parking lot. They called us over. They told us we couldn't miss the opportunity to see the eclipse. She literally gave us turns using her special glasses. I have to admit it was a remarkable vision. But what was more amazing to me was the kindness of these two young women. They did not need to stop us, and they did not need to share their glasses. They wanted us to share in this moment together and to me that maybe as memorable as the eclipse itself. 

When I picked my dad up at the memory care center, he was very bothered about a participant in the program. So angry, that he said if he was twenty years younger, he would have put this person in his place. This anger continued into our dinner tonight. For 40 minutes, YES 40, he told and retold the story of this classmate he deemed as rude. The classmate sat in front of the big TV screen in the classroom, while a staff member was presenting and showing video clips. My dad couldn't understand why this participant was sitting in front of the screen, and staring back at the rest of the class. Blocking my dad's view. My dad truly was bothered and innerved by this, so much so, that he spoke to the staff member after the presentation about this participant. 

What my dad can't understand is that everyone in the program has dementia. That some participants have behavioral issues associated with the disease. No matter how we tried to explain that he needed to have more patience and tolerance, that this classmate wasn't trying to be rude or disrespectful, the more my dad kept digging his heels in about this issue. Truthfully we were going in circles over this dialogue. I suppose I should be grateful he was animated rather than sleeping in his plate, but the fact that he couldn't see beyond his own thoughts and feelings was noteworthy. He was stuck, not unlike a needle on a record. 

At the end of this 40 minute dialogue, we commended my dad for telling the staff person about his concerns and not acting out or trying to resolve or make the issue worse. We celebrate the small wins in my house.