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?

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.

Sunday, April 7, 2024

Sunday, April 7, 2024

Tonight's picture was taken in April of 2008, during Mattie's 6th birthday party! All of Mattie's kindergarten class was invited to the bowling alley and thankfully many of my  friends from Mattie's preschool stayed to help me run the party. Though I hadn't planned for this, I was super grateful that they were there, as keeping track of 16 or more children in a bowling alley is not for the meek. While at the party, Mattie developed a fever, and by the time he came home, he took a nap on the couch. Very unheard of for Mattie. It is hard to believe that three months after this photo was taken, Mattie was diagnosed with cancer. 

Quote of the day: When we think of those companions who travelled by our side down life’s road, let us not say with sadness that they left us behind, but rather say with gentle gratitude that they once were with us. ~ Unknown

I was on a tear today! I do not know if it my mood or the fact that it was a beautiful day, but I spent a lot of time spring cleaning today. I started with windows on our first floor. I was tired of looking through grim and dirt from the winter. So I got the ladder out and tackled the exterior of the kitchen windows. 

Then I moved to the front yard, and I did the exterior of our dining room. 

Then I moved onto the living room window. I looked like a tight rope walker, as I was walking along the outside window sill. I couldn't get a ladder close to the windows because of our bushes. 

Later today, I went into the garage and vacuumed the windows in there, as I couldn't stand seeing the cob webs and dirt. Then cleaned those windows and the garage floor. One would think I would be tired after that, but no!

I started on cleaning our porch. The dirt, debris, pine needles and leaves were everywhere. This is my first pass on cleaning it up. But my goal is to clean and polish the wooden deck over the next couple of weeks.