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.  

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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?