Saturday, April 12, 2025

Saturday, April 12, 2025

Tonight's picture was taken in April of 2004. Mattie was two years old. He absolutely LOVED his frog sandbox. Mattie literally played in that box in all seasons! Which was funny, because at first Mattie did not like the texture of sand. However, over time, he learned to appreciate the fact that he could build, create, and play with it! I miss that adorable smile.  

Quote of the day: On your darkest days do not try to see the end of the tunnel by looking far ahead. Focus only on where you are right now. Then carefully take one step at a time, by placing just one foot in front of the other. Before you know it, you will turn that corner. ~ Anthon St. Maarten

When you read tonight's quote, you may say, is this really the way to handle one of your darkest days?! To me this quote is spot on.... very accurate. The only way to cope, manage, and survive a traumatic loss, is by taking it.... ONE DAY AT A TIME, or putting ONE FOOT IN FRONT OF THE OTHER. This is not being cute, it is not being funny, or simplistic, it is instead being honest, realistic, and makes the unbearable more manageable. Before Mattie was diagnosed with cancer, I was very future focused. As soon as he was diagnosed, childhood cancer permanently changed me, to be present focused. In fact, if you ask me to project into the future, you will see me either turn off, get very uncomfortable, or just not go there. Losses and traumas build upon each other and it is amazing how my body can quickly switch into crisis mode. In crisis mode, I literally can operate like a robot. I take on one task after the other, after the other. But this robotic state comes at a very high price. I saw what happened while my dad was in the hospital. It gave me a minute to unwind. Well I had to unwind, I had a fever and felt very ill. I still had to care for my mom, but I wasn't balancing two people at the same time. 

Today was another whirlwind. I wanted to sleep a little later. But my mom was moving around the house and making a racket at 7am. Which of course triggered Indie, the cat. So despite my intention to stay in bed until 8am, it did not happen. I have to get up because my mom truly can't fend for herself. She wouldn't have the foggiest notion how to prepare breakfast, much less know where to find breakfast things in the pantry. Once breakfast was done, I decided I better get to the grocery store. My intention was to do this chore during the week, but that never happened with my dad's hospitalization. While headed to the grocery store, I ran into my neighbor who wanted to stop and chat. Like so many people in my life, neighbors are desperate to lend support and want me to find a way forward. 

Throughout the day, I was getting updates from the hospitalist caring for my dad. She truly was a peach! As I mentioned in last night's blog, I had to take a step back from spending 8-10 hour days in the hospital during this admission. If my mom wasn't with me, I could have done this, and push through not feeling well, but my mom truly can't handle this pace, she can't sit around in a cold hospital room, and finds all of this stressful. So this admission, we only spent about four hours a day there. Well that is after my dad was admitted. While he was in the emergency room, I was there all 8 hours and helped him transition to an in-patient unit. 

What I learned today was that the hospital staff couldn't get over how well my dad is cared for at home. They assumed I had multiple aides assisting me. When they learned it was just me doing all the care, they were stunned. Stunned because my dad does not have one pressure sore or skin ulceration. I explained to them that I do not let me dad sit the day away. I work hard to keep him as active as possible and moving his body. Certainly it would be easier not to do this, but I take the responsibility of caring for a loved one seriously. My parents cared for me as a child, and now that I am divorced they are still caring for me financially. This is the least I can do to respect and honor their life long love and support. 

When I arrived at the hospital, my friend Ann was there! She surprised my dad with baked treats and between me and Ann, we got my dad dressed and cleaned up. Once in the car, I had to drive to CVS to pick up his antibiotics and then we got home. As soon as we walked in the door, my dad had an enormous bowel movement, and I had a big clean up job. 

After I settled him in his chair, we gave him his birthday gifts. My dad turned 90 years old today. Naturally I had other plans to celebrate him today, but the fact that he is stabilized and home now, is probably the best birthday gift. Basically my dad let me know that it was a good birthday because he was with me! It was my dad's birthday, but hearing this was a big gift to me. My dad has devoted his life to loving, supporting, and caring for his family. To him family has and will always come first. A rare find these days. A special man indeed.  

Friday, April 11, 2025

Friday, April 11, 2025

Today's picture was taken in April of 2009! This was classic Mattie. Mattie's head of school had been teaching him the art of magic during the entire year that he was in the hospital. They met almost monthly for these lessons of learning and fun. Mattie really connected and loved Bob and Bob opened up a new world to Mattie. Magic became a therapeutic outlet for Mattie, and the tricks he performed helped him connect to his medical team! Cancer did not impact Mattie's fine motor skills and he actually was quite adept at performing the tricks. As you can see, Mattie had an audience (Linda - Child Life, Jenny - Art Therapy, and Sharon - Chaplin) and given that it was very hard for Mattie to socialize (as the treatments resulted in Mattie being diagnosed with clinical depression, anxiety, and medical traumatic stress), it was wonderful to see him come to life while performing magic. Not everyone has magic skills or knows how to perform tricks, so Mattie felt unique and it made him feel special. As his mom this was a unforgettable gift to observe, and a memory that will remain with me forever.

 

Quote of the day: When great difficulty arises, we tend to remember that what really matters are essential, earthy things, giving and receiving a glass of water, a cup of tea, taking the next breath. It is during the hard times that we notice that life is constantly offering itself to us. ~  Tracy Cochran

My dad is holding his own and has been stabilized. The beauty of Vancomycin, a very strong IV antibiotic. The difference between this hospitalization of his and previous ones, is I am not spending 8-10 hours sitting in his hospital room with him. Since Wednesday, I haven't been feeling well. I received a pneumonia vaccine, that has truly slowed me down. Yesterday I was fighting a fever and could hardily keep my head up. Yet I pushed through that because I had to go to the hospital. But by the time I came home last night, I was crashing. I literally took Tylenol and then Advil and sat in my dad's recliner with a heating blanket on top of myself for hours before going to bed. 

This is his first hospitalization where I have had to take a step back and rely on the hospital team to do the caregiving. This typically isn't my style, but I know that if I don't recover, I won't be able to keep up this circus show. While visiting my dad yesterday, I had the pleasure (and I use this word sarcastically) to interface with the urology team. Keep in mind that this team knows my dad quite well as they are the ones who performed all his kidney stone surgeries in 2024. While they were talking to me yesterday, they were adamant that my dad does NOT have sepsis or a urinary tract infection. I can't tell you how ridiculous that sounds, because EVERY member of the hospital staff has told me that my dad has been diagnosed with severe sepsis and his infection was caused by kidney stone fragments (as assessed through a CT scan). I have news for the urology team, the data is the data and it doesn't lie. Part of me wonders whether the team gets dinged in some way by insurance or the hospital, because their patient has returned in less than a year with sepsis. I don't know, but I am trying to understand their irrational reaction to the data!

The urology team insisted that my dad did not have an infection and that his urine was clean. When I asked them why my dad has been on IV Vancomycin for two days, they had NO RESPONSE. When I asked them why there was blood in the urine and kidney stone fragments picked up on scanning, they had NO response. I then pushed back and said, the hospital wouldn't have prescribed a high dose antibiotic, if he did not have an infection, nor would my dad have a very high white blood cell count if he did not have an infection. My dad's blood has been tested countless times and no other infections are being picked up in testing. 

Now here's the funny thing about the urology team. It was two doctors that came into the room to talk with me. What was evident to me by observing body language, is that one doctor absolutely hated and resented the other one. The other one being the talker, full of himself, and arguing with me about the infection. Watching them alone was a reality TV show, but I had to shelf that because I was too busy advocating for my dad! 

Turns out my dad has a large kidney stone in his left kidney. If he were younger, then I believe they would be taking a more proactive approach to addressing this stone. But given that my dad turns 90 on Saturday, they are more hesitant to give him general anesthesia. Yes, okay, I get it. But here's the kicker. The talkative one said to me that I have to be observant of my dad's urinary tract issues and when he is pain. Trust me, I did not like the tone, and as good as this doctor dished out, he got it right back. Clearly he has NO concept of what it is like working with someone who has Alzheimer's! My dad doesn't report out issues or problems, because he can't! He could be passing a kidney stone (and has), and he will tell you he is "fine" or "fantastic." So I know I can't rely on him for accurate reporting, so instead I have to be the medical Columbo! 

I am headed to the hospital now and will report more tomorrow. But I know I have to write the blogs in the afternoon now, because once I get back from the hospital, I need to rest and slow down to recover. 

Thursday, April 10, 2025

Thursday, April 10, 2025

Tonight's picture was taken in June of 2009. This was Mattie's SECOND birthday party! Celebrating his 7th and last birthday. Mattie's actual birthday was celebrated at the hospital and then my friend, Christine, hosted this special party in her backyard. As you can see, her husband, James, surprised Mattie..... dressed up a in a roach costume and holding a cake in the shape of a roach! Understand that Mattie LOVED roaches because he knew I HATED them. I am quite certain Mattie never ever saw a live roach (lucky him!). In any case, it was a party to remember hosted by friends who who would do anything to make Mattie happy! 

Quote of the day: No matter how bad things are, you can always make things worse. ~ Randy Pausch

Yesterday was quite the day. I got up at 5:30am in order to do my household chores, get my dad up, showered, and dressed. Then downstairs for breakfast, off to his memory care center, so that I could go to my annual physical. However, when I went to wake up dad up yesterday morning, I found him already up and walking aimlessly around the bathroom, opening and closing every drawer in the bathroom. That was my first clue something wasn't right! After I showered him and got him dressed, we headed for the staircase to go down the steps. I had a hard time getting him downstairs, it was almost like he forgot how to walk and how to negotiate stairs. That was my second clue. Because I wanted to go to my physical appointment, I decided to bring him to his memory care center, as scheduling a physical takes a year's planning and I did not want to miss that appointment. As I rarely focus on my own health. 

On an aside, my long time physician of over 20 years retired. She is my age, and decided to retire early because like me she isn't married, has no children, and can't rely on her siblings to age together. When a friend invited her to Hawaii to age and grow old together, she decided to do it, while she still could. I totally appreciate that hard decision. But change for me is not easy, and I have had to face a lot of it! However, despite not liking the fact that I needed to meet a new doctor yesterday, I went into the appointment with an open mind. Certainly this new doctor is not my former doctor, but I have to say..... he's lovely! He is warm, empathetic, and an excellent listener. He also values psychosocial care! Overall, he wants to help and is collaborative about medical care. Needless to say, I shared with him in two minutes all the challenges I am now facing. Want to know what he said? First he said, I DID NOT deserve this and second, he said given all the incredible daily stressors and life changes it is remarkable that for the most part my health is good. To my surprise he did tell me that they were all worried about my weight. My former doctor did not tell me this, as I guess she felt I had enough on my plate. But I have lost so much weight that my body mass index is 18, and yesterday I learned that with anorexia it is 16. He quickly understood that I do not have an eating disorder, but a life disorder! After my appointment was over, I got dressed and waited for the nurse to give me a pneumonia shot. When she came in (and understand I have known her for 20 years too), she said..... the doctor says you are such a lovely person!  

By the time I got home for my appointment and running chores, my mom was besides herself. She was hungry and wanted lunch. But I noticed a message on my answering machine (yes I still have one of those!!!). It was my dad's memory care center calling about my dad's odd behavior. Turns out that my dad was walking around the center desperate to find me or my mom! He was also looking for a phone to call us. They felt he was very disoriented and confused. So while picking my dad up, I text messaged his doctor. I was going to bring my dad to urgent care, but the doctor said to take him immediately to the emergency room. So that is exactly what I did, with my mom in tow. We were in the ER for over 8 hours. As soon as I checked in, they immediately took our issues seriously. We were triaged to the front of the line. Things were happening quickly while in the ER waiting room..... EKG, blood work, and nasal swabs. They also assessed him immediately for a stroke. In fact, the triage nurse wanted to know why I waited so long to take him in, since you have about a four hour window to get treatment if you have a stroke. Well I did not take him in earlier, because I did not deem him as having a stroke. Turns out I was correct! But those of you at home who worry about identifying a potential stroke in a loved one, just remember FAST (Use the F.A.S.T. acronym: Face (ask the person to smile and check for drooping), Arms (ask them to raise both arms and check for drifting), Speech (ask them to repeat a simple phrase and check for slurred or strange speech), and Time (call 911 immediately if you see any of these signs). 

The ER was super busy. There were several patients around us dealing with drug overdoses and truly the heroic efforts of the nurses were incredible. They handled each of these patients with dignity and professionalism, which wasn't easy given how the patients were lashing out of them. Make a long story short, my dad had two CT scans, one of the brain (ruling out a stroke) and one of the abdomen (as his stomach area was distended and I am sure they were trying to see if there were stones, fluid, or blood building up in the abdomen area). They did an Xray of his lungs, urine tests, and lots of blood work. Starting a PICC line in my dad is SUPER hard. He has small and jumpy veins. So it takes someone with skill and patience to access his veins. They landed up putting in a PICC line in both arms. 

I have to tell you seeing my dad's stomach distended reminded me of Mattie. At the end of Mattie's life he developed ascites (a build up of fluid in the abdominal cavity). Truthfully Mattie looked pregnant. That was how distended his stomach area was, which required a procedure to drain the fluid from the area. Ascites occurred because of his disease progression. So even though my dad doesn't have cancer, you can connect the dots and see what I immediately thought last night when I saw this.... I thought my dad had a tumor and ascites. 

Thankfully my dad doesn't have cancer, he did not have a stroke, and was started on a broad spectrum of IV antibiotics, as they were certain he had an infection. They have run lots of tests to determine the origin of the infection and I think we are quite certain it is a urinary tract infection that turned to sepsis. Just like he had in 2020, which started his downward spiral. However, what the ER treatment team told me is that I caught the problem EARLY, as there are three stages of sepsis, and he is in stage one.  

Now what I am not mentioning is managing my dad's disorientation, his countless questions every two seconds, and his desire to leave the hospital and go home. I told him that could not happen, because he needed to be at the hospital to manage the infection. That this was something I couldn't manage at home, nor could I manage his aFib. My dad has a pacemaker, but whenever an infection happens of this magnitude it affects his heart rate. Needless to say, I waited until my dad was admitted to one of the hospital units. He can't advocate for himself or accurately report information. Therefore it was crucial that I interfaced with the treatment team. I pushed through that exhausted feeling and carried on. We did not get home until 2am and of course my mom wanted food! So I made cream of wheat, because anything else would have literally made me sick. 

Also note that I am balancing NO HEAT on the second floor of our house. So I got up at 7am because I was awaiting professionals to help me (naturally when I wake up early, they don't come early!). My mom slept downstairs last night and though I want to get to the hospital this morning, I am still waiting for the HVAC person to come over and resolve this problem. I feel like a firefighter, triage nurse, and juggler all in one. Any case that is my update for the moment, and wanted to write something, because I never know what the day will hold and whether I will have the energy to write later. 

Wednesday, April 9, 2025

It is 3am in the morning and I have spent the last 8 hours in the emergency room with my dad who was disoriented, confused and had slurred speech. He was admitted to the hospital. After x-rays, CT scans, blood work and urine cultures, it was determined he has sepsis! Will describe more tomorrow. 

Tuesday, April 8, 2025

Tuesday, April 8, 2025 -- Mattie died 789 weeks ago today.

Tonight's picture was taken on April 4, 2009. This was Mattie's 7th and last birthday. We invited a handful of friends to Mattie's hospital party and of course, Brandon (pictured here) was top on the list. Brandon was Mattie's best friend in cancer. Despite their age difference, they got along like peaches and cream. Brandon was diagnosed with cancer around the same time as Mattie, but by the point this photo was taken, Brandon was off of treatment. Despite being done with treatment, Brandon visited the hospital often and always made time for his buddy Mattie. These two understood each other and frankly Mattie enjoyed Brandon's company. Which I assure you was a blessing, because for the most part, Mattie shut people out of his life. Mattie was excited about the party and spent the entire morning in the child life playroom decorating it and planning on the games he wanted to play with his friends. Mattie was actually emotionally fragile, which was why I appreciated Brandon's presence at the party. Brandon had an innate understanding for how to mitigate issues and support Mattie without making it look obvious! I learned a lot from their special friendship!

Quote of the day: I told her once I wasn’t good at anything. She told me survival is a talent. ~  Susanna Kaysen

This morning, after dropping my dad off at his memory care center, I came home, and chatted with my mom while she was having breakfast. Then at noon, a nurse visited to assess my mom for in-home physical therapy. Years ago I concluded that my dad would no longer benefit from going to the clinic for therapy, and I have now made the same conclusion for my mom. Many reasons for this, but top on the list is her memory, followed by how stressful it is to get her out of the door in the morning for a physical therapy appointment at the hospital. Therefore, all her therapy will now be in-home based. Thankfully she can do this every couple of months and she loves the therapist that has worked with her since 2023. I have met this nurse once before, when she previously assessed my mom. She is an absolute love of a person, someone who clearly LOVES people, enjoys engaging with them and their family, and to me is a rare find.  

I continued reading more of the book I mentioned yesterday. I read through several more case studies today of women whose relationships ended. All the observations I made in yesterday's blog posting apply to the cases I read today. However, in one of the cases, it triggered a memory I had as a child. 

When I was in middle school, I remember my dad coming home one night and telling my mom and grandmother about a friend of his who was divorcing his wife. I knew this man and his family. As a child, I was absorbing what was being said, how it was said, and the reactions. When my mom asked why this man was divorcing his wife, my dad said (and understand I remember it like it was yesterday)..... He told me he OUTGREW his wife! My mom and grandmother laughed at first and then had a harsh reaction to that statement. The statement and their reaction were burned into my mind. Why did they have a strong reaction? For many reasons. First off, this couple was married for over 30 years! Second, they appeared happy and no one had an inkling that anything was wrong in their relationship, but third and most importantly, my grandmother was a devout Catholic. She believed one married for love of course, but for life. 'Death do us part,' was a sacred vow made in a church. 

But moving passed the moral convictions, one has to ask psychologically how does someone OUTGROW or STOP LOVING someone after decades of commitment? I mention this because such a question was asked in one of the chapters I read today. I am sure if I asked this question to each of you, you may have a different response. But here is my response. I do not believe for ONE SECOND that one spouse can OUTGROW the other or can STOP LOVING the other after years together. What I do think however is this is a cop out, to avoid the actual work, time, and honesty that are needed to address issues. These are trite words that are said, because it is far easier to flippantly say this, move on, and start a new life. It's like running away from a problem. But here's the thing, and I learned this with child loss, you can remove me from the context, you can remove me from the place, you can even remove me from Mattie's belongings and photos, but at the end of the day, ALL OF THESE memories travel with me. Meaning, experiences, memories, love, and a life lived together are a part of you, and you can try to put them in a mental box and lock it away, but emotions are like whack a mole. You beat an emotion down, but after a while, if not processed and the real work isn't done to address it, UP IT POPS! Not just pops, but explodes. 

So to me when a spouse says they have OUTGROWN the other or better yet as mentioned in this book chapter, that her spouse still loved her but was NO LONGER in love with her, I shook my head. I never viewed myself as ever getting a divorce. It isn't part of my lexicon, it isn't part of my moral upbringing, and most of all it isn't part of my character. My character is about loyalty, love, and commitment. When I made a vow, it was forever. I could never see myself hurting someone I love in this way, ever. In fact, I fall on the opposite end of the spectrum, because if I knew I have hurt someone, I would do whatever it took to repair the damage. That maybe why my brain can't process how one spouse could leave another without trying every option to work through perceived issues, and work takes TIME and EFFORT. 

For the most part, the chapters I read seemed to overlap the other. The editor of this book clearly wanted to provide hope to its readers, which is why there is a somewhat positive spin on this misery. But that said, two of the chapters were down right honest. One woman said it.... I don't want a new normal, I want my old normal back, and another woman said she was five years into the loss, and was still trying to stabilize her life. Now that to me is far more realistic, because things don't improve overnight. 

Switching gears..... Mattie Miracle's toiletry drive is now over. I finally sorted through items and my goal is to make deliveries this week to our hospitals where we host a Snack & Item Cart. To all our supporters who donated to our Item Drive.... THANK YOU! These items will be offered to families free of charge and are truly appreciated as they care for children with cancer. 

Monday, April 7, 2025

Monday, April 7, 2025

Tonight's picture was taken in April of 2008, at Mattie's 6th birthday party. It was an exciting year for Mattie, because he entered kindergarten and transitioned beautifully into his new school. He made solid friendships and in fact, his entire class and many of his preschool friends were invited to his bowling party. The theme that year was Scooby Doo! A favorite of Mattie's. In fact, do you see that Scooby Mystery Machine (the car) on the cake? Well that car sits on display in my office to this day! What you may not be able to tell from this photo was by that point in the party, Mattie had developed a fever and wasn't himself. Of course, when he got home, he took a nap on the couch. I did not think much of it, other than Mattie was sick, but would get better. But the reality was three months after this photo was taken, Mattie was diagnosed with cancer. 

Quote of the day: No one can tell what goes on in between the person you were and the person you become. No one can chart that blue and lonely section of hell. There are no maps of the change. You just come out the other side. Or you don't. ~ Stephen King

It is 10:20pm, and I am finally sitting still for the day. It was another whirlwind of a day. I am sure if you are reading this, you maybe wondering.... what on earth keeps her so busy caring for two 89 year old's? It is hard to describe, but all I know is I hit the ground running in the morning and I don't stop until my parents are in bed. This morning, after dropping my dad off at his memory care center, I took my mom into the city for her to get her hair done. While at the salon, I brought a book along with me, because my goal was to have a moment of peace, where I wasn't entertaining someone. 

I have been on and off with this particular book. Well more OFF than on! Why? Well it is a book that highlights 65 case studies of women in long term marriages, whose husbands left them and demanded a divorce. These women had no idea this was going to happen. Honestly the natural instinct is to think......... these women must have missed the signs. There must have been issues. But like these 65 stories point out, the answer is NO, there were NO signs and YES this can happen. 

There are commonalities in all the stories. Which is eerie. It almost reads like a script from one case study to the next. Truthfully, some of the contexts are different, but here are the commonalities..... 1) how a wife is bluntly told.... I'm leaving, 2) the change in personality from a warm, loving, and doting spouse, to someone who is cold, distant, and emotionless, 3) the rewriting of history and blaming the wife, and 4) no insight, appreciation, or understanding for the devastation this abandonment has caused the wife. 

I read ten chapters of this book, and these commonalities jumped right off the pages. I know sometimes putting a name to an issue is helpful and sometimes it is less isolating knowing that others are experiencing or going through something similar to us. Ironically for me neither resulted from reading this book. The only thing I felt from these ten chapters was sadness for these women, knowing how their lives have been decimated. Of course, the overarching theme of the book, is that positive things can result from this..... a quest for self discovery and a better life. TRUTHFULLY, REALLY!!???????????????

If you have read this blog long enough, then you know immediately how I reacted to this positivity! I am not against positivity, but what I am not a fan of is trying to always find the silver lining in a sea of devastation. Which maybe why I dislike the term post traumatic growth (you can see my two cents on this in the March 4, 2025 blog posting). Sometimes devastation is just that.... devastation. I also am not a fan of thinking one has to go through a crisis to grow, to gain resources, to become more compassionate or you fill in the blank____________. On the contrary, here's the reality, some times devastation is just that, there is no sugar coating it, and the discussion truthfully should center around the journey of survival, how one can find the will to continue living, and finding a way forward? That is where the discussion needs to be, that is the key, because when devastated, you aren't saying to yourself.... wow, now that this has happened to me, let me see how I can learn, grow, and evolve from this! I am quite certain I could have grown, evolved, and developed as a person without losing my son and getting divorced. So spare me the positivity, to me it is a turn off. 

When hurting, we need to be met where we are, and where we are, isn't always a place most people are comfortable visiting. I know this place quite well, it is a place I am very accustomed to living, given Mattie's cancer diagnosis and death. I will always remember how people I knew who would run the other way in a store to avoid having to interact with me after Mattie died. I carry that with me always, and once again, I face issues most people can't process, understand, and certainly have no idea how to help. There are NO FIXES, instead, helping someone dealing with long standing trauma, grief, and loss is to just be there, or to be reminded... YOU ARE NOT ALONE.

Sunday, April 6, 2025

Sunday, April 6, 2025

Tonight's picture was taken in April of 2007. We were celebrating Mattie's fifth birthday that day! We hosted a party at the National Zoo. What a weather day.... talk about torrential rain! I thought the event was going to be a disaster. I contacted all the moms in the morning and said they needed to bring rain boots, raincoats, and umbrella because the naturalist was going to take us for a Zoo tour regardless of the weather. Mattie was into the movie, Lightning McQueen, so we ordered him a special cake. For years, Mattie held dearly to that toy car that was on top of the cake! 

The Zoo gave all the children these adorable safari hats! All of Mattie's preschool class was invited to the party and truthfully the kids had a ball. In fact, the rain helped greatly! It made it feel like a real adventure. Because of the awful weather, there were very few visitors. It was like having the Zoo to ourselves! But to my surprise, the animals LOVED the rain. They were all out in it and frolicking around. 

Our group touring around that day!!!

Quote of the day: To be rendered powerless does not destroy your humanity. Your resilience is your humanity. The only people who lose their humanity are those who believe they have the right to render another human being powerless. They are the weak. To yield and not break, that is incredible strength. ~ Hannah Gadsby

Sunday is the only day of the week where I can sleep a little longer. But last night I literally kept waking up, almost on the hour. I think it has just been a difficult week emotionally and I am so strung out from balancing bills, worrying about finances, the future, and the list goes on. By 8am, I was up, but because there aren't appointments or places we need to get to on a Sunday, I don't feel great pressure to stick to a morning schedule. Which helps me feel slightly less stressed. 

When I woke up this morning, in my inbox, was a beautiful thank you note from a family who received a M&M Wish grant from Mattie Miracle. We granted their 8 year old son an iPad and Apple pen, which will help connect him to friends and family, be used as a distraction during his upcoming radiation treatments, and he is already using it for educational purposes and artistically creating up a storm. The photos of this little guy were priceless. Truthfully receiving this message today, reminded me that the work that I do, does matter. 

I spent the last 16 years building Mattie Miracle. In these years, I have helped to raise close to $2M for the Foundation. I am certain, that after Mattie died, instead of starting the Foundation, I could have gone to work and earned an income and perhaps secured my future. But it never dawned on me that my future would include divorce. If I knew what I know now, I would have made sure that I was financially independent, because what I learned from all of this, is the only one who is going to look out for me and my welfare is ME.

Later today, when I get that frenetic feeling inside, I went outside into the garden. I pulled out the greens bin and went at it. I pulled weeds, cut back vines, and shaped bushes. By the time I was finished, I filled up an entire bin! One thing is for certain at my house and that is there is always something to keep me busy.  

Saturday, April 5, 2025

Saturday, April 5, 2025

Tonight's picture was taken in April of 2006, during Mattie's fourth birthday party. That year, it was the first birthday party we held outside of our home! Mattie was intrigued by nature and dinosaurs, so selecting a local nature center as a venue made sense. A park ranger gave the children a walk through the woods and then they got to do a mini-excavation looking for plastic dinosaurs in a big sandbox. It was fun party filled with meeting many local animals like turtles and Mattie's favorite... snakes. Mattie may be gone 15 years now, but I will never forget the feeling of looking into his big beautiful brown eyes.  

Quote of the day: I had no idea a living being could sustain so much injury and go on living. ~ Yann Martel

I have to admit, today I felt LOST. It was a full day, as usual with tasks, chores, physical therapy for my dad, and then I took my parents out for a late lunch at our local diner. We haven't been to this diner for ten days. Jason (our favorite server there) had missed us. He was telling us that he was actually feeling down. However, after chatting with us, by the end of the meal, he was smiling, and he said that we changed his outlook about the week! What Jason reminded me once again, is that our human interactions and connections can either make us miserable or transform each other's lives in amazing ways. No matter how out of it I am, my goal is never to take out my issues on someone else! So I am happy Jason felt heard and we connected. 

In fact, when I got to the diner, I was in a low place myself. Literally there are some days that are so overwhelming, that if I think about the big picture.... the future, the thought of suicide looks appealing. However, when I have these vulnerable moments, what always guides my next move is knowing that my parents rely on me. 

While sitting and eating, the song, "Until I found you" came on. I have loved this song since I heard it two years ago! I know the melody, but today I actually listened to the words. It is a tender love song exploring the emotional journey of rediscovering love after heartbreak, with the lyrics reflecting on a guarded heart finding solace and happiness in a meaningful connection. 

As I sat absorbing the music and the lyrics, for a brief moment I felt okay. As if I wasn't going to jump out of my skin. Of course that feeling never lasts long, but in that brief moment, I was transported into the music. I focused on the song and not my own issues. 

Stephen Sanchez' Until I Found You.........................

When I got home, it was a beautiful weather day. So I got out my exterior paint and started touching up the deck. When the deck was power washed and stained, the stain got on a lot of the white wooden columns of the porch. So Indie and I went outside and for two hours I painted and she watched for birds. She was the best companion today, she stayed with me the whole time, and did not try to leave the deck (which typically happens when I am outside with her). Of course when I am outside, what I immediately remember is Sunny! Sunny loved our yard, he loved the porch, and I will never forget how he reacted the first time we walked him through the house. He was like a kid in a candy store! These memories remain with me forever and always. 

Friday, April 4, 2025

Friday, April 4, 2025 

Tonight's picture was taken in April of 2005, during Mattie's third birthday party. That year, I hired a student of mine from the University to do magic tricks and balloon animals at the party. He even brought his pet bunny, Hobbs, to the party. Needless to say the magic and the balloons made the event fun, festive, and memorable! 

Quote of the day: There is no pain so great as the memory of joy in present grief. ~ Aeschylus

Today was not a good day. How could it be, as it was Mattie's 23rd birthday! With each year that goes by, fewer and fewer people remember Mattie's day or the fact that this could be a challenging milestone for me. I am grateful for those who still remember. I recall in the early years after Mattie died, we truly did not know how to "celebrate" (and I use that term celebrate VERY loosely) the day! So we started a tradition in which each April, we went away to Florida. We figured getting away would take the sadness and anxiety off of knowing that there were no celebrations, no parties, no big to-dos. After all, I would say our care community had NO IDEA how to help us or how to acknowledge the day. So instead of being disappointed or upset, we removed ourselves from the scene! 

On top of not knowing how to celebrate Mattie's birthday, I am divorced and feel like I share this grief alone. It makes the loss even more profound, if that is even possible. 

I am not sure what I was thinking, but I scheduled an HVAC tune up and inspection for today. I truly thought it would be a simple process, an hour or two at most, and then I could take my mom out for tea. FORGET IT. If something is going to go wrong, trust me, it will happen to me. I got up at 5:30am, in order to make this appointment happen. I was given an arrival window between 8am and noon. At 9am, I called to get an update on timing, and the person on the phone said I was mistaken. That my appointment window was noon until 4pm! That woman had no idea what hit her! I gave it to her because my time is as valuable as anyone else's and you can't change times on me. By the time I finished with her, I had a tech arrive at my home at 10:30am. Thankfully Paul came at that hour, because you want to know what time he left? Try 6pm! It was a very frustrating day, and by noon, my mom was ready to go out! I had to juggle her expectations and make her lunch at home. 

My house has three furnaces and AC blowers. At this point, it is three too many to manage. Now that I am single, I carry the responsibility of this entire house, and it is a huge task. 

Turns out there are many things wrong with each furnace/AC unit. One unit had its motor burn out. It is ironic that I never realized that the heat wasn't actually blowing onto the first floor. I chalk it up to juggling way too many things. Literally when the tech told me I needed a new motor, I literally almost flipped out! As I haven't budgeted for this and I hate surprises. If it was just a motor, that would be bad enough. But there are several other problems. Today, I only addressed the motor, as my parents need heat, and eventually we will need air conditioning on the main level. 

With each hour I was stuck at home today, the more pent up, frustrated, angry, and upset I got. I literally was walking around talking to myself! When things got too much for me, I went outside to pull weeds and sweep up magnolia blossoms. I am not sure what I am more upset about..... having to face Mattie's 23rd birthday without him, or facing life as a single woman. Add it up, and it makes for a very bad concoction.

The highlight of my day was a special delivery at 12:45pm! A dozen bundtlets of various wonderful flavors sent to me by my dear friend. A friend who I have NEVER met in person, yet we have been connected through this blog for 16 years! She has become a person who shares my ups and downs, and some days it is several times a day! 

Aren't they adorable? Mattie would have greatly approved, as there were many days and weeks in the hospital that he lived on vanilla frosted cupcakes! So they reminded me of my special, humorous, creative, bright, and loving son. 

On this 23rd birthday, may Mattie always know that .... I Love you, miss you, and I am forever your mom!

Thursday, April 3, 2025

Thursday, April 3, 2025

Tonight's picture was taken in April of 2004, during Mattie's second birthday party. That year the theme was Blue's Clues, and YES I did a clues game with the children. By Mattie's second birthday, he was excited, understood what was going to happen, and was in the mix the whole time. A big difference from his first birthday party, where he and I spent some time alone in his bedroom. As the noise and commotion where a sensory nightmare for Mattie. Mattie would be 23 years old tomorrow. It is hard to believe he was alive for only 7 years, and gone now for 16 years. Any one who tells me that things happen for a reason, I want to know what GOOD reason there could be for childhood cancer?

Quote of the day: No matter what you’ve done for yourself or for humanity, if you can’t look back on having given love and attention to your own family, what have you really accomplished? ~ Lee Iacocca

One of my friends sent me an article entitled, Caregiving can test you, body and soul. It can also unlock a new sense of self. I sat down to read it this evening, and several things jumped out at me. Now mind you, caregiving is NOT something I need the 411 on, as I come from a long line of caregivers in my family and I did my dissertation on the stresses of family caregivers, who also work full time. As this article points out, many people who take on the role of caring for an older adult, for the most part do not go around introducing themselves to others as caregivers. This article talks about the concept.....caregiver identity theory. Researchers want to know why caregivers do not ask for help and use the support that's already out there? Identity theory suggests one reason..... People don't think of themselves that way. The c-word (caregiver) doesn't resonate with them.

I get what the theory is suggesting and I also get that family members may not use the terminology CAREGIVER to define themselves. But I DO NOT believe for one minute that caregivers do not ask for help or look for support, because they have an identity problem! That to me is down right ridiculous. Whether caregivers call themselves caregivers or not is irrelevant. Caregivers do not ask for help for MANY more solid reasons. Such as guilt, the desire to serve in this role and to give back, and the financial burden associated with help. 

Putting the identity theory aside, the article does a great job highlighting how this woman changed as a person, once she took on the intensive role of caring for her mother who had a stroke. She mentioned that the person she used to be was erased, she no longer did things for herself, didn't meet with friends, and better yet she had no desire to do any of that either. I understand, I relate, and I agree 100%. 

Caregiving has a way of sucking the life out of you. As such it makes it harder to engage with the outside world, a world that is not inundated with medication management, pain, bodily function issues, life and death decisions, and the list goes on! Which is why most caregivers, like myself, disengage with friends and other activities. Mainly because we are living in two separate worlds.  

What caught my attention in this article was the statement.... "This idea that you'll go back to the person you were before, that's never going to happen." I think that is the most honest, accurate, and sobering reality that I have read in a long time. It is 100% true. I see it with my caregiving role with Mattie. I supported Mattie, now 16 years ago, yet my identity of being a mom who helped her child cope with cancer is ALWAYS a part of me. It doesn't go away and therefore it would be impossible for me to return to the Vicki that I was before Mattie was diagnosed with cancer. That person no longer exists.

Add to that enormous change, is now my role as my parent's caregiver. I am managing the impossible alone. I do not have an adult in my house EVER looking out for me, for my best interest, or to lend a hand when I need a break. There are no breaks, instead, I have to rise to the occasion each and every day, and I have done this for three and a half years, with no breaks! 

With each caregiving role I take on, another piece of me dies. Then tie into this intensive role, being divorced, and I truly do not see a way of coming back from this nightmare. What has happened to me as a wife and a mother, is actually far more devastating than the intensive caregiving I perform on a daily basis.