Saturday, February 15, 2025

Saturday, February 15, 2025

Tonight's picture was taken in February 2009. That day I was asked to leave Mattie in the child life playroom, so he could work on Valentine's Day surprises. Mattie did not just create one or two things! He created drawings, cards, cutouts, decorated a Valentine's Day box, and made me this heart crown. Mattie's art therapist, Jenny, captured Mattie giving me all these wonderful gifts to me! These gifts are still part of my life today, as I created a special collage from them before I moved into our house in 2021. This collage now hangs on a wall in my office. 

Quote of the day: You don’t need a significant other to lead a significant life. ~ Mandy Hale

As tonight's quote points out, do you need a significant other to lead a significant life? Probably not, but I would say it helps! We are social creatures and to me every aspect of life is better when it is shared with someone. It has been a steep learning curve for me to navigate the world alone. Remember I was married since I was 25 years old, and happily saw the world through two sets of lens. It is a major life change and adjustment to figure things out on my own. Sure I can figure out tasks, I have had to, but what does it mean emotionally to be solo again? Well the answer is complicated, painful, and some days disorienting. In so many ways, that empty feeling I face now, reminds me of when Mattie died. You search, you long, and you hope to find that person you loved and lost. You just can't accept that they are gone, and yet there you have it, and you, your brain, and your heart have to glue the pieces back together in order to function. I did not say thrive, I said function, because there is no thriving, NOT right away anyway. 

This morning, my dad's physical therapist came over and did a session with my dad. I love this therapist, and she has such positive energy and we have many things in common. It just helps to put all of us in a better mood. Later in the day, I took my parents to our local diner. We visit this diner every Saturday. It is not just about food, it is a social experience, as we know the servers and the managers, and with each visit we learn more about their lives and they share photos of their children with us. It makes us feel a part of something larger than the pain we sit with each day. In addition, the diner was playing 50s music today. Well this was like a trip down memory lane for my parents. Which got us talking about Frankie Valli and the Four Seasons. Music is a wonderful therapeutic tool and though my dad has trouble remembering things from one minute to the next, he remembers and feels music. In fact, I would say my dad's love of music passed along to me. 

I was telling his physical therapist this morning, who is also a country music fan, about my Saturday memories with my dad. When I was a young girl, like around 10, every Saturday, I would get in the car with my dad and we would do chores, like visiting the Italian deli, go grocery shopping, and sometimes we even went for ice cream together. But in the process, my dad would have the radio on! The first music that I listened to on the radio was country music. I can distinctly remember the song, Your nobody called today, by Sylvia. If you have never heard it, it is below. All I know is my dad and I would get a chuckle over this song! Keep in mind that my dad is a total family man, and the content of this song could NEVER apply to him, yet we just loved the song! Sometimes we would just break out into a chorus of this song without warning. To me this is beauty of music. Within the notes and lyrics, are wrapped memories, feelings, thoughts, and time periods within our life!

Friday, February 14, 2025

Friday, February 14, 2025

Tonight's picture was taken in February of 2009. This to me has to be one of my all time favorite photos! Mattie's art therapist, Jenny, snapped this photo. That day, Mattie was working for hours in the child life playroom with his art therapists. I was not allowed in the room, because Mattie was working on all sorts of Valentine's Day surprises for me. One of his creations was this crown of hearts. When Mattie put it on my head, he then did his signature move.... we touched noses, he looked deeply into my eyes and we then fluttered eyelashes at each other. I can recall this exact moment like it were yesterday, and I truly hoped we would have many more moments like this together. 

Quote of the day: I used to think that the worst thing in life was to end up all alone. It's not. The worst thing in life is ending up with people who make you feel all alone. ~ Robin Williams

This morning, after dropping my dad off at his memory care center, I went grocery shopping. I naturally know that today is February 14, but literally when I walked into the store, I was hit by red roses, chocolate covered strawberries and heart balloons everywhere! In part it was disorienting, mainly because I guess a part of me blocked out what today signified. For me, it is the first Valentine's day unmarried. This brings me no joy or happiness what so ever, as for me, life is meant to be shared with your other half. My first reaction to seeing this sea of RED was to turn around and go back home. But that wasn't realistic, as I needed groceries for the upcoming week. So instead, I took a deep breath and marched along. But naturally I observed men around me buying items to acknowledge the occasion. One man was telling the lady selling chocolate covered strawberries about his wife and the significance of the particular chocolates he was choosing. I thought it was cute, but I am not sure the lady selling the berries felt the same way. 

I am always intrigued by the origins of a holiday. I came across this Good Housekeeping article, 30 Fun Valentine's Day Facts about the Holiday's History, which I thought was precious. I included a list of 10 below, but there are many more, which you can read by clicking on the link!

1. St. Valentine wasn't just one person: Nobody knows for sure if the holiday originally celebrated St. Valentine of Rome or St. Valentine of Terni, both of whom were martyred. Legends say that St. Valentine of Rome was a priest who defied the Roman Emperor Claudius II's ban on soldiers getting married and continuing to marry couples in secret. Other stories say that he helped Christians escape Roman prisons and fell in love with the jailer’s daughter, writing her a letter signed "From your Valentine."
2. In the 1300s, it officially became a holiday associated with love.
3. The first Valentine was sent in the 15th century: Charles, Duke of Orleans, wrote it to his wife while he was a political prisoner in the Tower of London. One of the lines in the poem? "I am already sick of love, My very gentle Valentine." Swoon!
4. Not until the 1840s did we get the first mass-produced Valentines. Known as the "Mother of the American Valentine," Esther A. Howland sold cards with lace and ribbons that commercialized Valentines in America.
5. The tradition of giving Valentine's Day flowers dates back to the 17th century. In the late 1700s, Lady Montagu was the wife of the British ambassador to Turkey. She misunderstood a local custom of using rhyming words to convey secret messages and thought the flowers themselves that were used in the rhymes represented secret meaning. This idea of “flower language” caught on in Europe, where specific flowers could represent feelings of love, hate, regret and more. Over time, red roses became more and more linked with romance.
6. Nearly 250 million roses are grown in preparation for Valentine's Day each year.
7. The color of flower given on Valentine's Day holds meaning.
8. Americans spend a lot on love. Americans spent nearly $26 billion on Valentine's Day gifts in 2023. People are also expected to spend an average of approximately $193 for Valentine's Day.
9. Americans send 145 million Valentine's Day cards each year (and that's not even including all those kids' Valentines exchanged in classrooms). This makes Valentine's Day the second biggest holiday for exchanging greeting cards after Christmas.
10. People also spend millions of dollars on gifts for their pets. In fact, around 27.6 million American households gave Valentine's Day presents to their pet dogs in 2020, and more than 17.1 million picked up gifts for their cats. All in all, American households spent an estimated $751.3 million on gifts for their pets on Valentine’s Day.

I could lament about all that is missing in my life, and that could fill up pages and pages. But instead, what I am going to focus on are the things I am grateful for today:

• I am grateful to be Mattie's mom, and his crown of hearts (above) which I incorporated into a collage that hangs on the wall in my office, is a reminder of our love. 

• I am grateful for the text messages, notes, and cards I received from friends.

• 
  I am grateful for the wonderful chocolate covered strawberries and brownies I received from a dear friend. 

• I am grateful that I am physically healthy and can manage my parent's care.  

•  I am grateful to have the love of Miss Indie!

 

Of course, it is my hope that YOU also know I am GRATEFUL to all of you who continue to read Mattie's Blog! Some of you have been on this blogging journey with me for 17 years! We have become good friends through words, reflections, photos, and memories! Thank you for loving Mattie, his life and his legacy.  

Thursday, February 13, 2025

Thursday, February 13, 2025

Tonight's picture was taken in February of 2009. Mattie was pictured with a homemade frosted cupcake. In between hospital visits, I would bake two dozen mini cupcakes to bring to the hospital, and I used them as incentives. After Mattie completed a physical therapy session, he would get a cupcake. Since Mattie loved these cupcakes, it was a strategy that seemed to work! His smile said it all!

Quote of the day: Love is something eternal; the aspect may change, but not the essence. ~ Vincent Van Gogh

This morning, I received an interesting email. The email was from a friend of my mom's who thought my mom had just died. Truly seeing this first thing in the morning, freaked me out. She did not explain how she learned this but wanted to reach out to me. Literally when I first read the message, I thought perhaps this was some sort of fraudulent message. But I checked and double checked and then wrote back to this friend. She did respond back to me and I wanted to find out if some sort of message was going around on social media. Turns out that wasn't the case, but naturally I wish to get down to the bottom of this, as such a rumor to me is disturbing. It is an interesting way to start the day.

It was a hard day, and I did non-stop clean up for my dad. When I entered their bedroom this morning, the smell hit me before anything else. I wish that was where it ended, but I dealt with this numerous times today. As hard as caregiving is, this pales in comparison to the other issues in my life. 

The highlight of my day was what greeted me on my doorstep! This wonderful gift of chocolate covered strawberries and treats is a reminder that I am LOVED. 

Wednesday, February 12, 2025

Wednesday, February 12, 2025

Tonight's picture was taken in February of 2009. That year, we must have purchased every Lego kit on the market. Those we did not purchase, were gifted to us. We put together small, medium, and big Lego structures! Legos were our therapy! While putting together these creations, our minds were focused on this happier task, and we took a break from cancer! I will never forget what vital diversions Legos provided us and how Mattie loved creating and building. After Mattie completed the assembly he then showed his nurses and his psychosocial team the finished products. Legos assisted Mattie and his care team in meaningful dialogue, and if they could talk about Legos, then it lead to other conversations about how he was feeling. However, there would have been NO medicine talk without first bonding over something else. Legos provided that safe outlet.  

Quote of the day: There is hope, even when your brain tells you there isn’t. ~ John Green

Last night, I went outside to try to get a jump on shoveling the driveway. Believe it or not, whatever I had done, was covered in snow minutes later. It was like trying to hold back the ocean. Nonetheless, I am glad I got the process started. I must have been outside for two hours. It was a white out and when I looked up the total accumulation for my city, it was over 8 inches. 

This was what I saw outside my front door! A sea of white. However, when I woke up this morning, I found the roads had been plowed (which was amazing, as this isn't always the case) and my neighbor was already working on my driveway with his snow blower. He's a kind soul and he also knows I am paranoid about falling on the ice, since I do it frequently. So after he used his snowblower, he then shoveled by hand to remove all snow from the driveway and walkways. Truly a blessing!

I have to admit that I was tired from shoveling the night before, so having someone help me, it greatly appreciated. On top of caregiving, I roasted a six pound chicken. This has become my tradition, if we are stuck at home because of snow, I want dinner to be special. While prepping the bird, I received an email from my mom's car dealer. Her car is in for service. Why? NOT because it was a scheduled service (which it had in December), but because when I started the car, a nasty gram popped up on the screen telling me the car's battery was low. Don't ask me how the car could get fully checked out in December, and now the whole battery required replacement. This particular car dealership is a nightmare. They are a complete night and day experience from my Ford dealer. 

Any case, today's message was that I had until 9am on Friday to return the loaner car! Mind you I brought my mom's car in last Wednesday. It isn't my fault that they delayed servicing the car until today! I did not appreciate the tone of the email I received and rest assured, when I arrive at the dealership tomorrow, I will be speaking to a manager. I will spare you the formal complaint I filed on this dealership in December of 2024. Servicing the cars was never my job while married, but what I do know is I am not going to now get pushed around because I am a woman.  

In order to be able to drive the car tomorrow, I had to clean all the snow off the car! That literally took me two hours, as 8 inches of snow is a lot to deal with and some of it had turned to ice! Of course once the car was cleaned off, then there was snow all over the driveway, which required more shoveling! Needless to say, my plan was to do Foundation work today, and once again, I was consumed by endless chores. 

Dinner consisted of a wonderful roast, which I had to carve, sweet potatoes, fresh cranberry sauce (yes I freeze cranberries throughout the year!), and I sauteed asparagus. After dinner was finished, my mom asked my dad..... what did you eat? His response was..... cut up bananas. All I can say is my dad is lucky to have me, because given his cognitive issues, he is highly vulnerable. 

Tuesday, February 11, 2025

Tuesday, February 11, 2025 -- Mattie died 781 weeks ago today. 

Tonight's picture was taken in February of 2009. We were in the child life playroom at the hospital and that day, Mattie was constructing a volcano. A favorite past time of Mattie's, mainly because he loved hands on activities and particularly was fascinated by the lava type reaction he could produce! The limb salvaging surgeries Mattie had to remove bone tumors limited his range of motion with his arms. He literally could not lift his arms very high, and forget about trying to reach over his head. Naturally this was very frustrating for a six year old, but Mattie had great determination. If he wanted to do something, he found a way! 

Quote of the day: Loneliness doesn’t come from being alone, but from being surrounded by people who can’t understand you. A deep feeling of isolation comes when you realize that even the person standing right next to you is unreachable. ~ Anonymous 

It was an early morning in my household, because I had to get both of my parents to their primary care doctor for their annual physicals. In order to get to a 10am appointment, I got up at 5:45am. That is how much time I needed to allot to make this happen. At some point, today, all I wanted to do was put my head down on a pillow. I am very aware of the fact that I fell on my hip on Saturday outside my side door, I have a big black and blue on my hip, and yet I have to mentally put that somewhere and continue plugging away. Fortunately I am very good at blocking out pain. 

With each appointment, the doctor assesses my parents memory and does this with a brief cognitive test. I always find these tests amusing because I have heard them so often, I know all the questions! My dad is holding steady and hasn't had much of a decline since his last visit a few months ago. Of course, my dad had no idea what day it was, what month we are in, what year it is, and so forth. My mom thought we were in April! Wouldn't that be nice, that would mean trees were leaving out and spring had sprung! 

Overall, my parents are holding their own. Typically their doctor likes his older patients monitored each day with blood pressure and oxygen levels, but he understands why I am NOT going to do this, and he also understands that I monitor my parents visually VERY closely. So I would like to take some credit for their stability. 

Currently we are in the middle of a snow storm. I can't tell you how much this freaks me out! I am NOT a snow person to begin with, but being the only capable adult in my household, managing everything and my parents seems even more daunting in a snow storm. I don't care how crazy I look, I will be out there shoveling snow several times tonight, in order to get a jump on the accumulation. Overall however, the isolation that caregiving, being divorced, and a snow storm produces feels beyond overwhelming right now. 

I received two beautiful cards in the mail today from friends. I can't tell you how much these cards meant, it almost was like a lifeline reminding me that I matter. 

Monday, February 10, 2025

Monday, February 10, 2025

Tonight's picture was taken in February of 2009. I remember this moment in time, like it were yesterday! Pictured with me and Mattie, was Jenny. Jenny was one of Mattie's extraordinary art therapists. I was introduced to Jenny in week one of Mattie's care at the hospital and frankly neither Mattie nor I would have made it without her presence in our life. That day, Mattie was getting admitted to the hospital, however, his admission occurred through the out-patient clinic. Jenny was escorting us to the clinic but on the way Mattie wanted his wheelchair to go flying down the ramp in front of us. Naturally there was NO WAY I was going to let go of his wheelchair, but we wanted to give Mattie that feeling of freedom and zooming down a hill. So we ran down the ramp, holding onto his chair!!! We were such a sight that you can see the woman behind us was watching and smiling! Mattie's care team always helped us create "normal," non-cancerous moment, which have now become part of Mattie's legacy. 

Quote of the day: It is an absolute human certainty that no one can know his own beauty or perceive a sense of his own worth until it has been reflected back to him in the mirror of another loving, caring human being. ~  John Joseph Powell

Today this article, ASU researchers propose a unifying explanation for molecular chaos driving Alzheimer's disease, popped up in my news feed. No surprise as I am always looking into the latest research and findings on Alzheimer's disease. Caring for someone with a progressive cognitive disease is actually very challenging and it requires inordinate patience and compassion. Not to mention energy. It is hard to believe, that in the age of modern medicine, there is still no drugs on the market to stop the progression or cure the disease. I am not sure why this surprises me, considering the lack of attention and effective medications to treat childhood cancer. In so many ways our society has failed our young and our older adults with chronic diseases. 

This study highlights 'stress granules,' which are structures that form temporarily in response to cell stress, helping to pause nonessential processes while the cell recovers. Normally, they protect the cell during stressful conditions and dissolve once the stress subsides.

In Alzheimer's disease, however, these granules persist abnormally and become chronic and pathological, trapping vital molecules and hampering their movements into and out of the cell nucleus. Instead of providing protection, they cause harm and contribute to the disease's progression.

What I love about this study is researchers have uncovered a transformative new approach to a possible intervention. If the formation of these stress granules can be altered this could have ramifications on halting or delaying the onset of symptoms. That would be miraculous because we certainly know very little can assist an Alzheimer's patient who is actually symptomatic and has both brain amyloid plaques (which are clumps of misfolded proteins that accumulate between neurons and disrupt cell communication) and tau tangles (twisted fibers of a protein that build up inside neurons, impairing their function and ultimately leading to cell death).

Did you know that there are currently 6.9 million Americans and 55 million people worldwide living with Alzheimer’s? Alzheimer’s is the most expensive disease in the United States. Its annual raw expense is more than $270 billion, but the toll it takes on patients and caregivers alike is incalculable. A substantial reason that Alzheimer’s doesn’t cost more is thanks to over 16 million unpaid caregivers who have taken on managing their loved one’s disease. That’s more than 17 billion hours of unpaid care for family and friends with Alzheimer’s.

Here are some interesting facts from the Alzheimer's Association:

• 
  Each year, a family spends, on average, more than $10,000 to pay the out-of-pocket health and long-term care costs of a senior with Alzheimer’s or another dementia. This is more than four times greater than the average annual out-of-pocket costs of seniors without dementia. 
• In the last five years of the life of a person with dementia, family out-of-pocket health care spending totals nearly $87,000 — more than twice as high as for a person with cancer and nearly 75% higher than for a person with heart disease.
• More than half of caregivers report high or very high levels of emotional stress, and more than 1 in 3 report high or very high levels of physical stress. 
• One in 5 care contributors cuts back on his or her own doctor visits, and 1 in 9 do not always buy the medications needed for themselves. 
• Among Alzheimer’s caregivers, 74% report they are somewhat to very concerned about maintaining their own health since becoming a caregiver. 
• More than 1 in 3 Alzheimer’s caregivers say their health has gotten worse due to their care responsibilities — compared with only 19% of nondementia caregivers.

Sunday, February 9, 2025

Sunday, February 9, 2025

Tonight's picture was taken in February of 2009. Mattie was home between hospital treatments and that day we took out this volcano kit, built the volcano and then Mattie mixed some of the provided solutions, inserted the solution into the crater of the volcano and soon thereafter, it started to erupt. Mattie absolutely loved all hands on activities and no matter how badly he felt, some sort of science experiment typically would catch his attention and change the mood in the room, even temporarily.  Back then, I learned the importance of celebration all small victories and diversions. 

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

Last night, I went outside to do some chores. I walked down my side steps, no problem. Mind you it wasn't raining out and there was no change of weather. When I was ready to come back inside, I put my foot on the first step of our porch, at which point, I went flying in the air! The steps were completely covered in ICE! It is a miracle that I did not hit my head or break a bone. I did however fall on my right hip. I already have hip issues from my days of dancing. So I try at all costs to avoid further hip injury on the right side. Truly once I fell, the wind was knocked out of me. But there is no one to help me, so I had to help myself. 

I picked myself up and went inside. I did three things immediately, I started taking Advil around the clock, I rubbed Arnica gel on my hip, and sat on a heating pad. In fact, I slept with heat on my hip all night. It is a blessing that I did not injure myself to the point that I would need medical intervention. I have a huge black and blue on my hip and I can feel achiness, but this is something I can manage on my own. My side staircase eventually needs to be replaced as it is falling apart and eventually I want to replace it with material that prevents such accidents. As I joke with myself all the time..... add it to the list! I am sick of managing the list on my own, truly!

Sunday is the only day of the week, where I can sleep past 6:30am. It is lovely to have a slower start to the day. While getting showered and dressed today, I started listening to a YouTube video a dear friend sent me. The video presenter is a woman who has had her share of loss and trauma, yet despite all she has been through she hasn't lost her sense of humor. In any case, she went on to tell a story about her battle with depression. One particular day she did not want to get out of bed, but she had a therapy appointment, so she had to pull herself together. She drove to her appointment and while getting out of the car, she looked at herself in the rear view mirror and was stunned to see what she looked like. She realized she hadn't washed her hair in days and worse, she was embarrassed that she hadn't showered and was smelling less than fresh. Clearly a resourceful woman, she went into the therapy office, proceeded to the restroom and found a can of air freshener in there, and used it. She joked with her audience that she smelled like a freshly baked peach pie. I swear listening to her, had me laughing, and yet at the same time, I could relate and understand the depths of her pain, because she was unable to meet her most basic of needs.

Fast forward to the next scene in the YouTube video. The therapy session started and the therapist asked her how she was doing. She told him, NOT GOOD. Soon thereafter, he handed her a stack of index cards and told her to write one thing on each card of something that was said to her or had been done to her that is causing her pain. She said, by the time she was finished, she filled out countless index cards and lined them all over the therapy room floor. The therapist had her look at these cards in totality, and her immediate reaction was... "wow, no wonder I feel so heavy inside, no wonder I don't want to get out of bed."

This simple exercise enabled her to visually see all that she has been through! As an audience member it was powerful to hear her recall that moment in time, but then what happened next caught my attention. The therapist could have said anything to her, but what he said was "I believe you, and I am so so sorry this has happened to you." The therapist did not have a trite statement, he did not offer a quick fix, nor did he even offer a ray of hope. What the therapist did was absorb the pain that was all over the floor (in index cards), and validated what he was hearing and in essence was a bear witness to her trauma.  

Why am I mentioning this story? Because I think it illustrates what any of us can do to help our fellow human beings who maybe hurting! The art of listening, absorbing what is being conveyed, and bearing witness to someone's pain, loss, and trauma are gifts! Priceless gifts and when feeling such depths of pain, words really don't cut it! But being understood, believed, and not alone in our pain can make the difference to someone in great despair. 

Her therapist's response, reminded me of Mattie's social worker's reaction to me soon after he died. About a month after Mattie died, I had several friends who truly thought I was "broken" and needed to be "fixed." I put these two words in quotations because these were the exact words spoken to me. Truly my world had just ended with Mattie dying and then I had the added burden of feeling misunderstood and judged by friends. After Mattie died, I did frequently visit Mattie's hospital. Remember it was like a second home to me, and his healthcare team had been on this intense journey with me for over a year, so I felt like they shared my trauma journey with me. So on one occasion, I happened to be visiting the outpatient clinic at the hospital and I ran into Mattie's social worker, Denise. By happenstance! Denise happened to be a trained bereavement therapist, which worked to my advantage. I told her what I was struggling with and I said to her.... "apparently I need therapy." Denise's response to me, will NEVER be forgotten, because it was so profound, like the one in the YouTube video. Denise said, "do YOU feel you need therapy or would YOU be seeking therapy because friends, who do not understand your loss, are telling you need therapy?" Again, a simple question, but it got to the heart of the matter. Within minutes, Denise normalized my very abnormal circumstance and helped me see that my reactions to Mattie's death were understandable and not pathological. 

So what's the moral to this story? There are ONLY three people in this world.... (1) Those who have experienced grief and trauma, (2) those who are experiencing grief and trauma and (3) those who will experience grief and trauma. We may feel powerless at times, but I am hoping you can see that the power to help someone else really lies within each of us..... listen, believe, and bear witness to someone else's pain.