Saturday, August 31, 2024

Saturday, August 31, 2024

Tonight's picture was taken in August of 2005. Mattie was three years old and very excited that day, as we took him to Legoland in San Diego. It had to be Mattie's favorite theme park! Mattie was a big train fan, especially Thomas the Tank engine. The beauty of Legoland was they have huge Lego structures of all kinds. Truly it is a park that has something for everyone! 

Quote of the day: One of the hardest things to do in life is letting go of what you thought was real. ~ Kathleen Aquino

I took this video of Mattie in the Fall of 2007. I enrolled Mattie in an after school club, called Construction Club. I knew this would be right up his alley, as it involved building things out of every day objects and the club was run by his kindergarten teacher. On the first day of the Club, Mattie returned home with a spaceship that he designed! This five minute video highlights Mattie's explanation of this ship! This was what our days looked like, and whatever Mattie brought home, I tried to take an interest in it and to get him to dialogue about it! I was fascinated by the way Mattie's mind worked and given what you see here, you might understand why I nicked name him "my little engineer."

I have no idea what awoke me at 1am this morning, but like the night before, I was wide awake. I seemed to have developed a post nasal drip, and felt like I was drowning in fluid. So I propped myself up, took several deep breaths and was able to fall asleep eventually without needing the TV. I am sure part of these sleepless nights is attributed to stress. 

I am very stressed out about September bills. I could have put my head in the sand and not think about it, but I knew this wouldn't help my anxiety level. I also know if I don't attack issues head on, no one else in my house is going to do it. I have to be the responsible adult on all fronts. Once I got my parents settled after breakfast, I headed to the computer and decided to create a September budget flow spreadsheet. Typically I do such a sheet each month, but on paper. Today, I decided there was too much to account for, that I needed an Excel spreadsheet. In fact, the process was so helpful, that I most likely will do this monthly, so that I have a way to track things very concisely month to month, and honestly with each month that I can juggle all of this on my own, it illustrates to me that YES I can do this. These spreadsheets will also help me capture historical data so that next September, I can see how I managed all the expenses. As my lifetime friend Karen said to me tonight.... I maybe more of a numbers person than I give myself credit for! NOT SURE about that, I just know that invention is the mother of necessity!

This afternoon, I went outside onto the porch with my cat, Indie. I sat outside for at least thirty minutes. While there I had several hummingbird sightings. Hummingbirds tend to become very active in September, before they make their flight to warmer climates. This morning, I changed their sugar water, to anticipate their frenzy. Cleaning out the feeders is a production, but one that is worth it, as I love seeing these remarkable birds. 

Aren't these white flowers on my chive beautiful?!

I love this portion of our garden. The crape myrtle was here when we bought the house, but Peter planted all the roses, because he knew how much I love them. I have been nurturing them all summer. 

My cardinal sighting! 

My Sunny Hibiscus. I bought this plant in the spring, and I must admit that I bought these hibiscus because of its name. To me it is a tribute to my beautiful Sunny! 

In any case, when I bought these plants, they were TINY! Now look at them!

This evening, I made sausage and peppers for dinner. Yes I form the sausage into meatballs. It was delicious and I am trying all sorts of things to inspire my dad to eat. 

Friday, August 30, 2024

Friday, August 30, 2024

Tonight's picture was taken in August of 2004. Mattie was two years old and was visiting my parents in Los Angeles that week. Mattie had a natural instinct to be cautious, which made parenting to some extent easier. It took a while for Mattie to approach water and get in a pool. But eventually Mattie got there, and swimming lessons over many summers helped. When I look at this photo, I had all sorts of hope for our future and of course for Mattie's.

Quote of the day: You will never know true happiness until you have truly loved, and you will never understand what pain really is until you have lost it. ~ Unknown

I came across this video of Mattie that I wanted to post tonight. It is one of the many videos I found while cleaning out my Google account. The context of the video was Mattie came home from kindergarten. While in class he had traced, cut out, and colored a big red heart. When I asked Mattie how he knew he wanted to create a heart, his answer was.... because you are great! That was my Mattie. To me this very short video is priceless! Check out the beauty of my Mattie! 

Last night, I fell asleep and then at 1am, I was jolted awake. Why? We had a power outage. My fan went off, my sound machine went off, and it was like someone flipped a switch in my head. I bounced out of bed to figure out what was going on. I could hear the generator start, but pretty soon thereafter, the actual power returned. Of course clocks and things were blinking and instead of going back to bed, I fixed all the electronics. Sleeping is not my friend. If I wake up, it is very hard for me to reset and get back to sleep. So at 2am, I turned on the TV and finally fell asleep. 

When I woke up this morning, I could see that all the outdoor lights were still on. Despite it being light out. That may not sound like a big deal, but to me it is, because it meant that I needed to figure out how to solve this problem. I am SICK of having to play firefighter each and every day. It gets very tiring, as I live with no one who is capable of addressing or solving anything. 

On an aside, prior to Mattie being diagnosed with cancer, I could sleep without any white noise in the background. In fact, I had NO problem sleeping at all. Once Mattie was diagnosed and we had to live in the hospital, I learned to live on very little sleep (like 2-4 hours on any given night) and I became a very light sleeper. Mostly because when living in a hospital, nurses and residents are coming in and out of your room at all hours! Some aren't kind, they would flip on the bright overhead lights in the middle of the night. I can't tell you how many of these gems I had to deal with, and I assure you at 3am, it wasn't my best hour to be playing games with me or Mattie. If you think I am assertive by day, try me at 3am!

Living in a hospital was such a nightmare, especially in a pediatric intensive care unit. Because there are NO quiet hours, the place is a buzz 24/7/. The walls were paper thin, and I could hear conversations, issues, crying, and even children dying next door to us. When I tell you it was a horrific sound, I am not kidding! It was like living in a war zone. We endured this not just for one night, but try 14 months straight. Any case, within the first month of treatment, one of my former students gave me a wonderful sound machine as a gift to address this NOISE. I never used one before, so she told me all about it and how useful it could be to drown out sound. Mary was 100% correct. With every hospital admission, Mary's sound machine came with us. We had that machine going every night! 

Once Mattie died, that sound became a necessity to us. I think there was so much turmoil in our heads that we needed the sound of rain to block out the chaos. To this day, I still use the device that Mary gave us in 2008. Remarkable no? Any one who thinks that childhood cancer can't change a parent, FORGET IT! That would be a lie. My sleep has been permanently changed, as has my ability to focus and concentrate when there is noise and other distractions around. Of course let's not talk about the psychological toll of Mattie's death!

Back to the outdoor lights! For the most part, I was able to reset all the timers and have gotten many of our lights to work again. But that feeling of panic and anxiety are ever present, because I constantly am afraid that things will happen in the house that I will not be able to manage and to fix. This panic is a direct by-product of being separated and on my own.

Thursday, August 29, 2024

Thursday, August 29, 2024

Tonight's picture was taken in August of 2003. Mattie was a year old and visiting my parents in Los Angeles. We were in a portion of the LA Zoo that had hands on activities for children. Mattie had his hand right in the pool trying to touch a sting ray. Mattie was fascinated and inspired by nature, and I was fascinated and inspired by him!

Quote of the day: When your heart is broken, your boats are burned: nothing matters anymore. It is the end of happiness and the beginning of peace. ~ George Bernard Shaw

I am very grateful for family and friends who reached out to me today. Yesterday was a low day, as you could tell from my blog posting. Not that today was sunshine and unicorns, but it was more manageable. It is amazing what a kind text, email, and message can do to help me through. I am very grateful for the amazing people in my life. 

This morning, I had an appointment with my gastroenterologist. He is a New Yorker and very good at what he does. The last time I had a colonoscopy was on October 31, 2019. Funny date for it, no? Peter and I did our colonoscopies months apart that year, so we could support the other. Unlike me, Peter managed the prep and the whole process like a champ. I know he decided to go first, in order to help normalize the nightmare for me. The procedure itself is fine because you are knocked out, but the prep is sickening. Given my migraines, I can get nauseous at a drop of a hat. 

Any case, while scheduling my colonoscopy for October, I had to think about who can drive me and sit with my mom while I am undergoing this procedure. I have lost my plus one, my medical emergency contact, and it was just another reminder of the devastation I am facing. In addition, this was the first health form I completed in which I checked "separated." That may not sound like a big deal, but to me it is the end of the world. As if I was checking off that I lost a limb. 

I am a person who prides myself on my interactions with others and having to admit that the most valuable relationship in my life has crumbled apart is a bitter pill to swallow. If I only had a magic wand to fix our relationship, but in lieu of a wand, I tried everything humanly possible to stabilize our marriage. I remind myself of this, and though that doesn't bring me comfort, I never want to live with regrets, because I will always love Peter. 

Wednesday, August 28, 2024

Wednesday, August 28, 2024

Tonight's picture was taken in August of 2003. Mattie was one and I captured him in a photo as he was crawling over to the basket where I kept all of his books. Mattie loved to look at books, to pull them all out of the basket and flip through the pages. I read to Mattie daily and he had several favorites. In fact, I got to experience the beauty of children's books by exploring them with Mattie. 

Quote of the day: I fell in love with him two seconds after I saw him. And I’ll never stop loving him, even though it doesn’t make sense anymore. ~ Nicole, “Marriage Story”

Each day I wake up and wonder, what will happen to me today? I could say that I am hopeful that tomorrow will be a better day, but it never is! The profound sadness and confusion are overwhelming. I live under inordinate amounts of stress and I am not sure how much more I can handle. 

In the past, during such turmoil, I turned to Peter. We certainly have endured our share of turmoil with Mattie's diagnosis, cancer journey and death. We had such a special connection, that when Peter would talk with me during challenging times, I knew everything was going to be okay. I would say that no one else in my life has had this same ability to calm me down and reorient my outlook. But I guess that was the beauty of our connection and our 35 years together. I trusted Peter and I do not easily give my trust and love away. 

Though I may have gone out on dates in high school, I would say that Peter was my first boyfriend. We grew up together, went to college together, sang in our college choir together, we supported each other through various graduate school programs, jobs, my dissertation, studying for my licensure exam, having a baby, raising Mattie, Mattie's sensory issues, Mattie's schooling, Mattie's cancer diagnosis, Mattie's death, creating and running Mattie's foundation, and the list goes on. With each and every life event, we grew closer, we found ways through life's highs and deepest lows. We had no family in the Washington, DC area, so we relied heavily on one another. 

Trying to live life without the person who has been an integral part of my life now for 35 years is disorienting and disheartening. But here I am, though I am not sure I am going to get through this particular chapter in my life. No glimmers today. That notion was short lived and GONE!  

Tuesday, August 27, 2024

Tuesday, August 27, 2024 -- Mattie died 777 weeks ago today.

Tonight's picture was taken in August of 2005. Mattie was three years old and visiting my parents in Los Angeles. Here was the funny story about all of this! My mom gave Mattie a gift of trains and vehicles. Of course he loved playing with them, but look what brought him joy! YES THE BOX! Mattie put it on his head like a hat and was parading around the house. It was the simple, everyday items that ultimately always caught Mattie's attention. 

Quote of the day: Be confused, it’s where you begin to learn new things. Be broken, it’s where you begin to heal. Be frustrated, it’s where you start to make more authentic decisions. Be sad, because if we are brave enough we can hear our heart’s wisdom through it. Be whatever you are right now. No more hiding. You are worthy. Always. ~ S.C. Lourie

Today was another blur. I had my dad home today and it takes a lot to keep him awake. All he wants to do is sleep the day away. That isn't good for him physically or cognitively. My biggest battle with him now is his massive use of paper products. My dad goes through two rolls (YES, I am not exaggerating) of toilet paper a day, a roll of paper towels in a week, and two boxes of tissues a week. Let's not talk about paper napkins. Even supervising him in the bathroom, it is like going into battle. I can't get him to stop using up and wasting paper. My biggest concern is he is going to create a problem in our septic system. 

This morning, I slept to 8am. I am absolutely exhausted and days now that I don't have to get either of my parents to appointments, I sleep later. I need it. As soon as I got up, I went to feed Indie. I could hear my mom directing my dad in the bathroom and telling him to go back to sleep. When I got back upstairs, I saw my dad lying down in a funny way on top of the heating blanket. I went into his room and got him up to reposition him. No matter how many times I have told my mom that my dad needs supervision getting back into bed, she doesn't get it. I got him up, in bed, propped up pillows under his knees and arms, covered him and turned the heat back onto the blanket. Once I completed my morning routine and went back upstairs to wake my dad up, it was another show. Many runs to the bathroom, and yesterday, he literally went to the bathroom all over the bedroom floor. I spent a good portion of the day, cleaning and cleaning to remove the smell. Smells may not bother some people, but for me, I am like a blood hound. I smell everything and smells bother me intensely. 

I managed more bills today and spoke to the company that provides our home and car insurance. There is just so much I have to learn and each day, when I wake up, I hope for a calm day. A day I am not frantically answering questions and putting out fires. I have yet to have such a day. I live constantly on the edge awaiting the next shoe to drop. It is exhausting living with this much stress.

Any case, today's gift that I learned is that I am paying for my home insurance in my monthly mortgage. I literally thought I was going to get hit with this insurance bill this September. To my amazement, I learned I can take that off my September worry list. I take the financial gifts when I get them. Then I moved along to manage my mom's health insurance claims and other issues. I have taken WORN out to a new level, of course in the midst of all of this, I am doing laundry, preparing and serving meals, and providing guidance and entertainment. 

Tonight while trying to clear the dinner dishes, my mom derailed me with a bill. I literally had to stop everything, call the company in question and attempt to talk to a live person! Which was a feat in and of itself, I am so sick of automated phone lines. Where do I sign up for an easier life? A life where my husband was my husband? When things made sense in my day to day existence. Whenever I am out now and I look at older couples together, I say to myself.... that was supposed to be me.

Monday, August 26, 2024

Monday, August 26, 2024

Tonight's picture was taken in August of 2005. Mattie was three years old and that day my parents took him to a local fair in Southern California. The fair was right up Mattie's alley, as there were live animals to meet, greet, pet, and observe. In addition there were pony rides, games, and other fun activities. As you can see, Mattie met up with this lovely white goat. Mattie had an understanding for how to pet and interact with animals from having Patches, our calico cat at home. Certainly when Mattie was a toddler, he tried to chase Patches around, but he quickly learned that did not help him connect with Patches. From Patches he understood that animals need kindness, gentle touches, and to respect their space. 

Quote of the day: This relationship affected you more than you are letting yourself believe. The ending hurt you more than you acknowledged, and you need to process that. Your continued interest in this person means there’s something about the relationship that is still unresolved, and it is probably some kind of closure or acceptance that you need to find for yourself. ~  Brianna Wiest

In the midst of everything else I was juggling today, I got a nasty gram from Gmail about storage issues. Again, this was something I would have turned to Peter in the past for help. He was my tech guru as this is not one of my strengths. Which is why this will most likely be the last thing I have to eventually address. There is so so much I have had to learn since Peter left in September. Some things were easy to take over and other things really have pushed me to the brink. 

On September 23, Peter will be gone from my life for a year. Do not ask me where these 12 months have gone. To me it has been an absolute blur, a nightmare, and has left me completely confused, distraught, angry, depressed, and well, you pick the adjective. Whatever you can think of, I have or am experiencing. If anyone would have told me that this would happen to my marriage, I would have laughed. Laughed because NEVER in our marriage did we ever have to seek counseling. NEVER did we walk out or want to walk out on the other, and NEVER would I have imagined that either one of us could do this to the other, leaving the one left behind in pieces. Peter has been part of my entire adult life, without him, almost feels like I have lost an appendage. I am forced to navigate the world in a whole new light. The damage may not be physically visible, but the psychological and emotional toll is tremendous. The Vicki people once knew is gone, dead, and will not be returning. 

In the process of trying to clear my Google accounts, I came across videos and photos. It was like a trip down memory lane. I found several videos of Mattie, pre-cancer and after his diagnosis. Hearing Mattie's voice was startling. However, you want to know the funny thing..... I recognized every aspect of his voice. His voice is ingrained in my brain, just like I would recognize my own voice, intonation, and expressions. This was a REMINDER (not that I need one), that Mattie is a part of me and will always be an important part of my life. I share with you two videos I came across today.........................

Mattie's News Story (we were interviewed by Peggy Fox, during Mattie's cancer journey)

Three Little Pigs (Next to Mattie is Katie, one of Mattie's extraordinary nurses. Their rendition of the Three Little Pigs)

Sunday, August 25, 2024

Sunday, August 25, 2024

Tonight's picture was taken in August of 2008. It was Mattie's first week in the hospital and thankfully we met this special woman, Anna, early on in Mattie's treatment. Anna was Mattie's physical therapist. Though Mattie was NOT wheelchair bound at the time, Anna introduced Mattie to wheelchair right from the beginning because she was trying to get him used to what was to come after his limb salvaging surgeries. Anna had Mattie focus on developing his upper body strength and as you can see, Mattie was hitting beach balls in the hospital hallway. I can't tell you how grateful I was for those hallways! They symbolized  freedom from the 2x4 hospital room!

Quote of the day: Love is never lost. If not reciprocated, it will flow back and soften and purify the heart. ~ Washington Irving

I am so exhausted from my dad's surgery on Wednesday, that I canceled his physical therapy session on Saturday. I knew I had to sleep in Saturday and Sunday in order to regroup. Sleeping in for me means sleeping to 8am. Typically because I am SO exhausted, I wake up, and though I may recall I have dreamt of something, I normally do not remember anything about my dreams. Last night was very different. This morning, I woke up and vividly could recall what I experienced. It seemed so real, so important, that it has been in the back of my mind all day. As if Peter is trying to tell me something. 

Since Peter left, I haven't dreamt about him at all, or at least I can't remember dreaming of him. Again, I think it is because I am so exhausted and have to wake up so early. But in my dream last night were several key features..... a fox, a long snake, a beach, a room, and Peter. Now because it was a dream, things were not linear. However, we were at a beach house. I was upset with him over what is going on now. At one point we are walking on a beach together discussing issues and then at another point, we were in a small room. While on the beach, I saw a very long and thick snake slithering toward us. Anyone who knows me, knows I HATE snakes. Snakes of all kinds. As soon as the snake passed by, then a fox came trotting by. In the dream, I just watched these things happen. I was scared, but absorbed them happening around us. 

I have no idea what the fox (perhaps an omen or spiritual guide), snake (letting go of the past), or beach (tranquility) mean. But what I distinctly recall is in the dream Peter was telling me that NOT everything is as it seems. Those were his exact words. The more I kept asking for clarity, the less I got. Yet his message was clear, that he loves me, always has, and for now that was all he could reveal. 

Dreams are just that, dreams. Kind of like a Hallmark movie. We wish for them to be true, but that isn't reality. What it is, is my mind desperately trying to understand what is happening to my life, to my marriage, to the man I thought I knew very well for 36 years. I know when I was writing my dissertation in graduate school, I practically wrote Chapter 5 (the discussion section, in which you have to interpret and make sense out of the results you obtained) in my sleep. There were aspects of my data that I just had trouble explaining, yet while sleeping, my mind was actively putting the pieces together. Which was why back then I slept with a pad of paper by my nightstand. I would awake up and immediately record thoughts! I view the issues I am having now, as significant as trying to write a dissertation. I have lots of data points, but they don't make sense to me. So instead my mind goes into overdrive at night trying to make sense of the unexplainable. 

After I cleaned up breakfast plates and got my parents settled. I went outside on our porch with Indie our cat. It is a shame that we have a beautiful backyard and my parents do not enjoy sitting outside, like I do. So I went outside alone. Indie was thrilled. I haven't let her out in weeks, not after she disappeared from the porch for an hour one night. Now if she goes out, she is with me, so I can supervise her every move. 

This is our porch. One of the things I fell in love about this house was the porch and gardens. In fact, that was what drew me to the house in 2021. Its Southern charm! To be surrounded by greenery, to me is a gift and this was my glimmer for the day. 

A few months ago, I tried to record three things I am grateful for each day. I had to give up on that quest, because I struggled with the whole notion. But glimmers are smaller aspects of my day, which I am trying to make room for and capture in mind and spirit. Who knows how long that will last, but for today, I spent thirty minutes outside on the porch, taking in the hummingbirds, birds, Indie, and the greenery.