Saturday, August 24, 2024

Saturday, August 24, 2024

Tonight's picture was taken in August of 2008. It was Mattie's first month of treatment, and in fact it was his first week within the hospital. Standing next to Mattie was Linda, Mattie's child life specialist. We could not have survived Mattie's cancer journey without Linda. She was a God sent, and became the inspiration for the services Mattie Miracle funds on a yearly basis. 

That day, many of Mattie's friends came to visit him in the hospital. To help normalize a very abnormal experience for the children who were visiting, Linda planned all sorts of games and art projects in the hospital hallways. It broke the ice and all the kids got involved. Linda quickly got up to speed on Mattie's interests, likes, dislikes, and the dynamics of our family. 

Quote of the day: When the situation is good, enjoy it. When the situation is bad, transform it. When the situation cannot be transformed, transform yourself. ~ Viktor Frankl

Today was not a good day. Why? Well there isn't just one reason. But as September approaches, there are many bills due in that month, and when I sat down to evaluate it all today, it truly was ALL TOO MUCH. I am left to balance all the finances myself. My dad is out of it, my mom is overwhelmed and stressed out on a daily basis, so that leaves me. I absorb an inordinate amount of stress and pain for all three of us on any given day. When under this amount of stress, I would normally turn to Peter, and together we would work on a solution. Problems are always easier to solve when done together and not in isolation. As I told the marriage therapist in November of 2023 (in which we only lasted through two sessions, before therapy was terminated), Peter and I are better together. Unfortunately I am the only one who shares that philosophy. I just do not understand how someone could walk away from me after 36 years, and not care about my welfare or well-being. 

My dad's cognitive decline is spiraling downhill. He does very little talking, is definitely in his own world, is eating less and sleeping more. He is the picture of depression for me as it is hard to see a once vibrant and bright man transformed into a hollow shell. By the afternoon, I got my dad up and took them out for frozen yogurt. I find that leaving the house each day is vital for my mental health and it is an excuse for my dad to get up, walk, and be one with the outside world.  

When I returned home, my mood hadn't really improved. So I took myself outside to the backyard and sat in a chair for about ten minutes. I consider that moment a glimmer. My friend from England (who I met in the fall while attending an on-line support group), and I talk about glimmers all the time. This is a term associated with trauma survival. Given the state that we are both in, in which we find it challenging to function, to see a path forward, and we are beyond disillusioned with life, we both have agreed to look for glimmers in our everyday lives. Glimmers are tiny micro moments of calm, peace, safety, or goodwill. Some examples of glimmers could be: spotting a rainbow, hearing your favorite song in the grocery store, or feeling the warmth of the sun on your skin. For me, being outside, surrounded by flowers and trees, was my glimmer. 

Friday, August 23, 2024

Friday, August 23, 2024

Tonight's picture was taken in August of 2008. Mattie had been diagnosed with cancer a week before this photo was taken. Peter, Mattie, our neighbor JP and his dog JJ went for a walk together at Scott's Run nature center. The only one alive in this photo is JJ, the dog. Just hard to believe. Mattie always wanted a dog and though Sunny entered our lives after Mattie died, Mattie got to experience the beauty of having a connection with an animal through his bond with JJ. 

Mattie and JJ practically grew up together and when Mattie died, JJ was depressed for weeks. He didn't eat and he would come down to our front door and just sit there waiting for his buddy. At one point when I let JJ inside, he grabbed one of Mattie's sandals and took it back to his crate. There it remained. Anyone who thinks animals don't feel or grieve, would be sorely mistaken. 

Quote of the day: Hearts can break. Yes, hearts can break. Sometimes I think it would be better if we died when they did, but we don’t. ~ Stephen King

My dad was stable enough today to go back to his memory care program. So I have learned two days of around the clock Tylenol and Advil works for him. This is good to know because he has another procedure just like this on September 18. The first day is a killer, but I now understand his signs and symptoms. Because he clearly can't report out!

In addition to everything else I am balancing, I have a neighbor who has been doing a massive house renovation. This has been going on a year now, with NO end in sight. Trucks show up at 6:30am and 7am, and the noise and chaos ensue throughout the day. For a year, I have picked up debris, have experienced my driveway being blocked, and other inconsiderate stuff. Last night, I found this big trailer sitting in the front yard. It isn't on my property, but nonetheless, I don't like seeing it on the grass. Neighbors all around me are very upset and several have called the police on many occasions. If Mattie were alive, I am quite sure he'd be fascinated by every truck and vehicle that comes on the property. Unfortunately I do not share Mattie's same fascination. As I always say, I moved from the city to escape noise and congestion, and then I got this. 

This evening while cooking dinner, I pulled out the cookbook Peter made for me when we moved to the house. I have many favorite recipes and when we lived in the city, I did not have things organized and in one place. Peter corrected that for me and when I look at this book, I wonder JUST WHAT WENT WRONG? None of this makes sense to me, and my one strength is understanding people and human dynamics. Which is why all of this perplexes me, but like a dog with a bone, I will eventually unearth what is going on and connect the dots. 

Fortunately over the course of the three years that we have lived here, I always paid attention to what Peter was doing in the yard. This evening, I went outside, got up on a large ladder, and cut back that climbing hydrangea. I should have taken a before photo, but I didn't. Imagine this thing climbing up the chimney and attaching itself all over the brick and our windows. I fixed that tonight as I know this isn't good for the structure of the house. 

After dinner and cleaning up, I went back outside in the dark. I watered some plants and figured out how to replace outdoor spot light bulbs. By the time I am done, I think I could write a how to tutorial of how to survive and maintain a house when your husband of 36 years leaves you.

Thursday, August 22, 2024

Thursday, August 22, 2024

Tonight's picture was taken in August of 2007. Mattie was five years old. This was our last summer of normalcy, because in 2008, Mattie was diagnosed with cancer. This photo was taken in San Diego, with the Coronado bridge in the background. I remember in July of 2008, when Mattie was diagnosed, I told his oncologist..... can we wait to start treatment, until we get back from our trip to California to visit my parents!? Of course the doctor said, NO, treatment had to start immediately! That was how clueless I was at diagnosis. Naturally I got up to speed immediately. 

Quote of the day: It’s hard asking someone with a broken heart to fall in love again. ~ Eric Kripke

This quote makes me laugh. Not only would falling in love again be the furthest thing from my mind, I would say I have become closed off from most of the world in order to protect myself. What I have learned over the last 11 months is that anyone can hurt me, even the person I loved and trusted the most. Therefore, if my own spouse can decimate me, who knows what anyone else could do to me! I for one have NO INTENTION of finding out. 

Today was another winner of a day. I had to have someone over to do work on the house. What I thought was going to be a somewhat expensive project, turned out to be ridiculous one. Nonetheless, I had no choice, but when facing bill after bill, my anxiety level rises significantly. I live with constant stress.... caregiving, house maintenance, unbelievable expenses and bills, legal fees, and of course heartache of grand proportion with Peter's abandonment. Some days I do not know how I make it through the day. TRULY.

Here's a happy story! Last night before taking my dad upstairs to bed, I noticed a FedEx envelope under my front doormat. I opened up the envelope and to my surprise was my Amgen co-pay assistance for Prolia. I have been working on getting this $1,500 since March! It would never have happened without my Prolia Angel at Amgen. I called John today to thank him personally. I also wrote a glowing email to his boss. We have gotten to know each other, since we practically talked weekly since June. John lives in Pittsburgh and he said that hopefully our paths will cross in the future. In any case, I am grateful to have people like John to turn to when I need help, because I am on my own. 

I received a care package from my friend and colleague, Nancy. So many lovely and thoughtful gifts. Everything from "love notes" to remind me I am loved to a Mary Poppins figurine (which is poignant, because I used to describe myself as Mary Poppins.... because when I was a mom, in my bag was practically something for all needs and purposes). 

The purple bat, I placed on one of my Mattie's memory shelves. He would have loved this pin. 

The miniature turtle which I got today, I placed next to my momma turtle (which I already had). These two turtles symbolize Mattie and me. 

Any time Mattie saw an animal with its baby, he always said.... they are just like us! Indeed, so happy to have this duo on my shelves. 

I am sure you notice the bride and groom Lladro. This figurine was on the top of our wedding cake. Here's the story about it. It is unofficially entitled, "Lefty." When we shipped it to our wedding reception site, the bride's left thumb broke off in the box. That's how the duo was affectionately called Lefty. Peter glued the thumb back, and it went on the cake, broken thumb and all. No one could see the break, but we knew! It used to be our joke. Now I wonder if that was an omen or sign! 

Next to Lefty, is a little bell. Do you see it? Peter's mom gave these bells out to guests as a gift at our rehearsal dinner. To ring in our union. Over all these years, I have had these reminders of our special day on display. Now of course the only one these items matter to is me.  

Wednesday, August 21, 2024

Wednesday, August 21, 2024

Tonight's picture was taken in August of 2007. Mattie was five years old. We were on an adventure at the LA Zoo. In fact, each August, I took Mattie out to visit my parents. It was two weeks of activities, out and about, and exploring the beauty of Southern California. The irony was with Mattie, my whole family had adventures we never would have done if he wasn't in our lives. He brought a spark, a glimmer, and was and will always be an incredible gift. 

Quote of the day: The cure for a broken heart is simple, my lady. A hot bath and a good night’s sleep. ~ Margaret George

Tonight's quote has me laughing! I do not know about the hot bath, but sleep is definitely key. Each night, after I put my parents to bed, I go into my room, turn on the fan and TV. Yes we have the air conditioning on, but I love the sound of a real fan. When my Verizon tech angel came the last time, we got to talking about TV shows. I told him I love watching the 80's show.... Who's the Boss. He laughed. He is around my age, so he knew exactly what I was talking about, he also told me he was a Tony Danza fan. When I look at Tony Danza, there is something about his smile with a dimple that reminds me of my Mattie. Overall, the beauty of Who's the Boss is the connection, respect, and support all the characters on the show have for one another. It is just wholesome and I love watching it each night. It is my escape into a world where family members actually care and respect one another. 

Today was a whirlwind. I got up at 3:45am. I packed snacks, blankets, hot hands and other items for me and my mom at the hospital. I tried to convince her not to come, but she insisted. I did not fight her because if I were in her situation, and let's say Mattie told me not to go to the hospital for Peter's surgical procedure, I wouldn't have listened either. I decided given the horrible early hour that I would use Mattie's wheelchair to transport my dad around the hospital. That was a brilliant idea! It would have been too much for him otherwise. I haven't used Mattie's transport chair since Mattie had cancer. Of course using it also transported me back in time to 2008. Perhaps Mattie's spirit was with me today. 

The doctor came to greet us this morning and he truly is trying. We got off to a rocky start, but I think he saw first hand what I am balancing alone. My dad's pre-op nurse, Jen, was amazing. What a kind, competent, efficient, and thoughtful human being. I was smart to bring electronic copies of my dad's power of attorney and medical power of attorney, because they uploaded them into the system for me. She could see that my dad really should NOT be signing any paperwork for himself. In fact, she first had him sign his consents, but after interacting with him for a few minutes, she realized he truly isn't competent. Which is what I have tried to tell others before Jen, but Jen got it on her own and quickly. My dad asked Jen about twenty times how long his surgery was going to be today. She answered each request kindly. What she experienced for a few minutes, I have daily, 24 by 7. 

My dad's cystoscopy, ureteroscopy, lithotripsy and stent replacements took almost two hours. The doctor came out and told us that the large (and I mean large, 1.7cm stone) stone in his left kidney is so extensive that he couldn't break it all up today. The doctor was concerned about having my dad under general anesthesia for too long. So he decided to stop for today and bring my dad back in two weeks for another procedure. Thankfully the right kidney is now completely clear of stones. Of course this means that my dad will have stents in his ureters for another two weeks. 

The post-op experience wasn't as positive as the pre-op one. They had my dad in recovery for an hour before letting us come back. When I got back to him, I found that he had urinated all over himself. He did not know what to do. So naturally I got the nurses jumping. How they did not realize that he was incontinent prior to surgery is beyond me. But I got them up to speed quickly. Literally it took two nurses and myself to clean him and get him dressed. When the nurse asked..... you have help at home.... and I answered NO. She just looked at me. You know that look of HOW ON EARTH DO YOU DO THIS ALONE??? All I said to her is God has to give me strength to make it through each day intact. 

I learned the medical resident placed three scripts for my dad in the outpatient pharmacy. I had to locate the pharmacy, which is in a different building of the hospital complex. Of course you know if you leave one building to enter another, you can't get back into the other building again without going through security. Truly I wasn't in the mood for this today. When I got to the pharmacy, the pharmacist flagged a script, as having a potential allergy for my dad. Now if the pharmacist can do this, why can't the doctor? I paid for the med, but told the pharmacist that she had to contact the doctor because in my opinion my dad did not need Flomax. He has stents, so Flomax is not needed. Guess who was right? YES, it was me. Oh and by the way, I had the pharmacist use her badge to get me back into the hospital.  

My dad has had a rough time at home. I have him on round the clock Tylenol, Advil, and Pyridium. He is also on antibiotics, and that never goes well with someone who has IBS. So literally I am changing my dad every thirty minutes. Again, all I can say is GOD GIVE ME STRENGTH.

Tuesday, August 20, 2024

Tuesday, August 20, 2024 -- Mattie died 776 weeks ago today. 

Tonight's picture was taken in August of 2007. Mattie was five years old. I had recently gotten back from a conference in New Orleans. When I did, I brought back the fancy face mask and fan that I received at the conference. As you can see, Mattie loved both items. Peter stayed home to care for Mattie while I was gone. It was an important conference for me, because the next year I became the president elect of this professional association. The year I was supposed to be president, Mattie was diagnosed with cancer. I never got to officially serve out my term, a position I was looking forward to and one that I felt would have helped to launch my career. Another thing not meant to be.

Quote of the day: A broken heart is the worst. It’s like having broken ribs. Nobody can see it, but it hurts every time you breathe. ~ Unknown

This morning, a representative from my Ford dealership came to pick up my car for service. They are about five minutes away from my home, and I am grateful for their free pick up and drop off service. Truly anything that makes my life slightly easier, I consider a miracle. For the past few days, I have been concerned about my car. It felt wobbly and while driving it felt like I was constantly driving over rough terrain. However, the pavement was flat and fine. At first I thought it was just me, but by Sunday, I wasn't comfortable driving the car. Fortunately I have my parents car, and I have been driving it since Sunday. Naturally in the past, I would have just asked Peter. Peter would have assessed the situation and addressed it. I no longer have Peter and instead have to figure it out. 

I wasn't sure what my service rep was going to say to me today. I was expecting anything from NOTHING is wrong with the car Vicki to IT'S BAD! Thankfully I learned that the tire weights came off from one of my front tires. Tire weights can fall off due to the adhesive that holds them in place gradually weakening over time. When this happens, the weights can become loose and eventually fall off. Missing tire weights can cause an imbalance, which explains the shaky and wobbliness that I felt. However, over time if left unchecked this could cause an accident or damage to the car. So I am glad I followed my gut and had the car checked out immediately. 

Today I alerted my service contact at Ford that I will be getting a divorce. Which is why I explained that I may need more help and guidance on car maintenance. I learned from my service contact that her father left her mother after a 36 year marriage, so naturally we got to talking. Unfortunately her mother died three years ago, and it sounded like her life was never the same after her father left. I TOTALLY get it! Her one piece of advice to me was NO ONE WILL UNDERSTAND, unless this has happened to them. That I should follow my own time line and find a way forward that works for me. INDEED! We were speaking the same language. After all Peter has been an important part of my life for 36 years, no one else's. 

Out of the blue, I also heard from a friend of mine from graduate school. His wife left him after a 16 year marriage. He told me his story to let me know that he understands, I am not alone, and that he feels the person who leaves always faces regret, remorse, and guilt at some point in the future. My friend says to be prepared for when this happens. He isn't the only person who has told me this. I of course, take it one day at a time, as I live with intense grief, pain, heartache, and disbelief that this is happening to me. 

I was on the phone constantly today. As my dad has to be at the hospital on Wednesday at 6:30am. What a time! My mom insists on coming with us, so it will be a hellish morning. Wish me luck. Why the hospital decided to wait until the day before his surgical procedure to do a pre-op screening is beyond me. Totally unprofessional and I let them know. At first the nurse did not want to talk with me, she wanted to work directly with my dad. I said that wasn't going to happen and by now this hospital system should know that my dad has moderate stage dementia. She got snippy, about supplying the hospital with his medical power of attorney and his power of attorney. I LOST IT! Why? Because I did this years ago, in order to be able to oversee his patient portal and advocate for him during his pacemaker surgery in 2022. It was a day of non-stop calls and issues. 

Signing off for tonight. Hoping that my dad's procedures go well tomorrow, as he needs a cystoscopy, ureteroscopy, lithotripsy, and two stent placements. All of this is outpatient and hopefully I will be taking home a stable patient. 

Monday, August 19, 2024

Monday, August 19, 2024

Tonight's picture was taken in August of 2006. Mattie was four years old. That day we were visiting Legoland in San Diego! Given Mattie's love of Legos, this was the perfect theme park for him. Actually it is a park that resonates with all ages, as it has something for everyone. In Mattie's hand was a toy car with a surf board on top of it. Quintessential California. That car was a favorite of Mattie's for many years, and it served as a reminder of all his fun trips visiting my parents. 

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

Tonight's quote is brilliant. Some days I am able to manage through, and other days, the reality of my loss becomes overwhelming. For the last 36 years, I thought my relationship with Peter was real, solid, and that we survived the impossible. When Peter walked out on me on September 23, 2023, this rocked my world. Everything that were givens in my life, things that I thought were true, have now all come into question. I can't tell you how disorienting all of this is, and yet, as his wife, I feel like there is no one who knows Peter better. Something just doesn't make sense to me about like a dog with a bone, I am determined to eventually get answers. 

This morning, I drove my mom into the city to get her hair and nails done. I have know my hairstylist and manicurist for decades. Neither of them can believe I am getting divorced. In fact, anyone who knew Peter and I, can't get over this, as we shared a special bond and love. No matter what I do, I am constantly juggling time schedules and my parent's needs. While at the salon with my mom, I have to track to the time, because my dad needs to be picked up at a certain time. I can't tell you the stress I feel over tasks, time, bills, the house, Peter's abandonment, and the list goes on. 

My mom started once again on her lament this afternoon. No matter how many times she peppers me, I have no better insights on Peter's behavior, his leaving, or what he does on any given day. I have NO IDEA because since Peter walked out on me, we haven't spoken to each other and in all intensive purposes it is like he died. We are that disconnected, which I assure you is deeply disturbing and makes me very unhappy. After hearing this for over an hour, I told my mom she had to stop. I felt faint, and developed a horrible migraine. 

The depths of pain I experience are indescribable, as it is very hard for me to accept that the man I loved and devoted by life to for 36 years is no longer by my side. How I could use the support now more than ever, and yet I manage the impossible each day alone. All of this could make me absolutely crazy, yet there is no time to have a melt down, to process anything, because I am juggling thousands of tasks and problems each and every day. 

My neighbors were on travel the last two weeks. I have been collecting their mail and tonight I met up with them to hand over their items. We got to talking, I greeted their dog, and I learned they were going to see Jerry Seinfeld tonight with their children. Years ago, Peter and I saw Seinfeld at the Kennedy Center. Just hearing that my neighbor's were going to this show tonight, transported me back in time. Of course that then led my brain into a tailspin, because unlike this family, I lost my child to cancer, and I am no longer married. How on earth did my life land up like this?

Sunday, August 18, 2024

Sunday, August 18, 2024

Tonight's picture was taken in August of 2006. Mattie was four years old and visiting my parents in Los Angeles. This was our August tradition. On every trip, we always visited Griffith Park. Truly it is an amazing place, and though it was only minutes from my parents home, I never went there when I was in high school. It took Mattie's existence for us to explore the Park! Mattie loved all the activities there, one of which was this train ride! I will never forget these moments, as I really thought I too was going to have many years of child rearing just like my parents and perhaps even one day be a grandparent. 

Quote of the day: Sometimes you have to deprive someone of the pleasure of being with you so that they can realize how much they need you in their lives. ~  Osayi Osar-Emokpae

With all the upheaval in my life, one thing is consistent..... Mattie Moon. He shines through my window, like a picture postcard, as a reminder that he is with me always. He never forgets and his love is a forever love. 

The moon through my bedroom window last night. 

I remember when Peter left me back in September of 2023, I would spend a lot of time by this window at night. Hoping that he would change his mind, that he would want to talk through his issues, and return to his family. Unfortunately those moments only exist on the Hallmark channel.