Wednesday, February 19, 2025

Wednesday, February 19, 2025

Tonight's picture was taken in February of 2004. Mattie was almost two years old. That day we took him to the Natural History Museum in Washington, DC. Mattie was looking up at the huge 11 ton African Elephant in the Museum's rotunda. Look at Mattie's expression. To me it was absolutely priceless! Looking at the world through Mattie's eyes is something I will never forget. 

Quote of the day: Courage isn't having the strength to go on, it is going on when you don't have the strength. ~ Napoleon Bonaparte

Today, I came across this article, Women who are deeply unhappy but too strong to admit it usually display these habits, says psychology. The title caught my attention, so I naturally kept reading! The article highlights how many women around the world have a hard time openly talking about their unhappiness. Honestly women juggle so many things now a days, that it is quite easy to feel overwhelmed and unhappy, and who has the time to truly focus upon it? This is a common thread that I think ALL women face! Which is why I think this article is worth perusing. 

The article goes onto to say that women who are deeply unhappy, but too strong to admit it, often exhibit certain behaviors. Six behaviors to be specific and they are:

1. They are perfectionists
2. They avoid social gatherings
3. They're overly selfless
4. They lose interest in things they once loved
5. They have trouble sleeping
6. They constantly feel tired
7. They hide their true feelings

You want to know what I thought of these six behaviors? I thought they were spot on! I exhibit all six! However, what I also quickly assessed, is that these same six behaviors can be exhibited in anyone facing and coping with loss and trauma. So which came first..... the unhappiness or the loss and trauma? In my case, it is multiple losses and traumas, all wrap around each other, culminating in my intense unhappiness. These six behaviors weren't earth shattering to me, but they do call out a word I haven't used to describe myself... UNHAPPY!

My mom was on Facebook last week and saw people talking about pasta frittatas. My first reaction was, WHAT? This is not something I grew up eating and neither grandmother ever made such a thing. I looked up the pasta frittata and its origin is Naples, Italy. It was a meal that evolved after WWII, when food was more scare, yet people did not want to waste left overs. You literally can throw left over pasta, meats, and vegetables into a pasta frittata. I stuck with something more basic tonight.... a pasta frittata with prosciutto and parmesan cheese. 

This is an easy meal and my dad had three helpings. So it was a hit! The next one I want to try is this one!

Tuesday, February 18, 2025

Tuesday, February 18, 2025 -- Mattie died 782 weeks ago today.

Tonight's picture was taken in February of 2008. That weekend we took Mattie to Roosevelt Island. A park we visited regardless of the season or weather! It was so close to home and Mattie loved it! I tried to save up bread for Mattie, so that when we visited the Island, we would have a supply. Mattie loved feeding the ducks! 

Quote of the day: Your friends will believe in your potential, your enemies will make you live up to it. ~ Tim Fargo

This morning I met with the electric company and had to notarize a document about the placement of this large transformer box. Truly, you can't imagine how big this box is, until you see it for yourself. Two weeks ago, I learned this big box was going to be installed along my front property line. Meaning, though it wouldn't be on my property, it would be very visible from all my front windows, not to mention an eye sore from the street. It was just happenstance that I learned about this box placement. I will always be grateful to the contractor on-site who chatted to me and my neighbors about this installation. In any case, after a lot of advocacy, this box is now sitting among trees and bushes, camouflaged from view. I am very grateful to the team lead that met with me this morning, who listened to my concerns, and thought outside the box about preserving the natural beauty of the property. 

When I came home with my parents this afternoon, I felt something was off! You know that feeling, that something is different, but what is it??? As I approached my driveway, I noticed this box with a yellow sticker. This box wasn't there this morning! So naturally I contacted the electric company as I want explanations regarding this splice box. A box I did not know was going to be installed, and installed on my property no less.  A splice box houses and protects wire connections (splices) between different electrical cables. Not only do I now have the box, but I have dirt all over the place in piles. 

So I await answers!

Later today, I went out to the backyard to pick up fallen branches and sticks from the wind storms we have had over the last two days. Mind you, a large bin just like this one was picked up by our trash service today. I can't keep up with the fallen debris! 

There are some days that I just seem to get by, managing tasks, bills, caregiving, and issues. Then there are days when I really miss my life, or what I thought my life was like and was going to look like in the future. I miss so many aspects of my life and it is a feeling that is hard to convey, probably hard to listen to or to even understand. Which is why some days I am mad, some days I am sad, and some days I don't see a way forward. Yet I have to pull it together, because tomorrow will be somewhat of a repeat of today.  

Monday, February 17, 2025

Monday, February 17, 2025

Tonight's picture was taken in February of 2009. This was what a typical physical therapy session looked like for Mattie. Truly incredible if you think about it! In the conga line (from front to back) was: Mattie, Jenny (Mattie's art therapist), Denise (Mattie's social worker), Jessie (Mattie's art therapist), and a physical therapy intern. The hand you see on the left holding the IV line was Anna, Mattie's physical therapist. Truly I have NO IDEA what I would have done without these incredible ladies. To this day, I still communicate with Jenny, Denise, and Anna. That is how significant and lasting a bond we created under the worst of circumstances. Through Mattie's cancer journey I learned so much about people, true friendships, and courage, and I witnessed the extraordinary feats of compassion that we experienced every day from our care team and Team Mattie. 

Quote of the day: It’s your reaction to adversity, not adversity itself that determines how your life’s story will develop. ~ Dieter F. Uchtdorf

It was a busy morning in my house! My dad's physical therapist had a session with him today. My dad has three different therapists that work with him, and this particular therapist typically works with my dad at his memory care center. Therefore, I do not get to see their sessions. But today, the session was done at our home! I have to tell you, I was stunned by what I was seeing. My dad was walking at a quick pace, was alert, and did not tire out from therapy. This is a night and day experience than I have with my dad, and what I observe during my dad's in-home sessions with his two female therapists. Today's therapist was a man, and I am not sure if it is a gender thing or what, but my dad was compliant and energized. Ironically this therapist says this is how my dad is when he works with him. Which led us to question..... why isn't he like this with the rest of us????? When I walk with my dad or ask him to do anything physical, it is like he is walking through taffy! Everything is labored and he gets out of breath. Which was why today was glorious to see, because this was the energy level I saw my dad at in 2021. It is possible today was an off day, but this is NOT what the therapist reports!!!!

While juggling the therapist, I had our landscaper visit. I have a team of two men that I work with to help me care for the property. I had Steve over today because I couldn't get the outside lights to work. The lights you see here have been off for over a year, making it very dark outside. I had my electrician look at this problem in the fall, and he felt that it would take him hours to trace the lines alone, to figure out the problem. He recommended me to contact my landscaper. You want to know how long it took for Steve to identify the problem? Try five minutes. Within minutes, he found the wire that had been chewed through by a chipmunk! When my Sunny was alive, we had NO squirrels or chipmunks in the backyard. Mainly because he would chase them right off the property! But without my herding dog, all the critters are back!

I can't tell you what a glorious sight it is to see the backyard lit up again... and then there was light! It feels like a miracle. This is today's blessing! 

Sunday, February 16, 2025

Sunday, February 16, 2025

Tonight's picture was taken in February of 2009. I snapped this photo because to me, Mattie was the ultimate multi-tasker. He was eating a donut, while playing with this cars and toys. There were actually several big pots on the floor filled with water, as Mattie loved water play. Truly he was a remarkable fellow, because despite how sick he was, he was still smiling! So much can be learned from Mattie. 

Quote of the day: She stood in the storm, & and when the wind did not blow her away, she adjusted her sails. ~ Elizabeth Edwards

I sometimes lose faith and wonder, does God love me? Or why am I being challenged over and over again? There are no answers, but as one of my dear friends reminds me, God is always with me and the reason I haven't crashed and burned, is because he IS watching over me. When she tells me this, it always makes me pause, to absorb what she's saying, and to consider that this maybe a possibility. 

Today was another difficult day. On top of all the other issues I balance, my dad has irritable bowel syndrome (IBS). Typically I deal with non-stop bowel movements, but today, I was faced with his constipation. Truly the combination of IBS and dementia is diabolical, because my dad gets fixated on an issue and it becomes so overwhelming to manage. I tried getting him to drink more fluid and to walk, in hopes that he would go to the bathroom, but the only thing that accomplished was more emotional agitation and his non-stop moaning. When I tell you moaning, I am not kidding. Of course, between myself and Mattie, I have faced just about every medical crisis. 

When Mattie used to get sick, prior to his cancer diagnosis, I had to give him Tylenol suppositories, because he refused oral medication. Therefore, I became an expert in administering suppositories. Fortunately for me, because today I administered a Dulcolax suppository to my dad. This is not a first for me with my dad. I have given him suppositories and an enema in the past. Perhaps I missed my calling and should have been a nurse! Nonetheless, I am like a walking pharmacy, and keep all sorts of things on hand. Thankfully, because without this intervention today, I am quite certain I would have had to take my dad to the hospital, like I did in 2020, when he developed an impacted colon. 

Each day provides a different sort of crisis to manage. It isn't just managing the constipation, but it is managing the emotions, fear, pain, and anxiety that comes with it, from both my dad and my mom. Literally by 2pm today, I was frazzled. But of course I had the rest of the day to navigate. 

At one point in the day, it was actually warm. I went outside, picked up sticks and branches and replaced burnt out light bulbs in our landscape fixtures. Then I was able to complete the Foundation's newsletter and put together documentation for taxes. Whenever I can accomplish something, it is a celebration. 

There are times I wonder, will I have the strength to face another day? This is not a feeling that is new to me. As I endured the impossible before when Mattie was diagnosed with cancer, but now I am older and have less support. It is a hard existence and the problem with this is I see no hope for a future. The future I envisioned is gone and course correcting now feels like a herculean task. The best I can do is take it one day and crisis at a time.   

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. 

Saturday, February 8, 2025

Saturday, February 8, 2025

Tonight's picture was taken in February of 2009. Mattie was in the child life playroom at the hospital and was having a story time session with Sally the Story Lady! Sally was a class act. Mattie loved her. Sally always told a story in costume and had props, and encouraged the kids to participate. Mattie never passed up a chance to see Sally, even if that meant Sally needed to come into his hospital room. Look at these two looking at each other! Total joy and enthusiasm! I will never forget these moments and I will always be grateful to anyone who reminded Mattie that he was a CHILD FIRST, NOT A CHILD WITH CANCER.

Quote of the day: How would your life be different if…You stopped allowing other people to dilute or poison your day with their words or opinions? Let today be the day…You stand strong in the truth of your beauty and journey through your day without attachment to the validation of others. ~ Steve Maraboli

As I mentioned previously, weekends are not always my best times of the week. Today, my dad's physical therapist visited and he had a session. My dad works with three different therapists. This particular woman I know quite well, because she worked with my mom at the hospital in 2022, for 8 months. When you see someone for 8 months weekly, you get to know them well. In this particular case, this therapist reminds me a lot of myself when I was in my 20s. Any case, whenever she visits my home, she has what I call "good energy." My mom loves her and literally we have a good time chatting, alongside my dad who is doing therapy. It is amazing how one person can transform the tone, the environment and outlook of the day.

After the therapist left, I continued to do some work, chores, and finally it got to a particular hour and my dad wanted to EAT! I take my parents out every Saturday and Sunday because otherwise, we are home all day and this isn't good for any of us. It helps to break up the routine, see people, and engage in the world. Every Saturday, we go to our local diner. When I tell you I know everyone there, I am not kidding. From servers to managers! What my mom and I love about this diner, besides the people, is the music. It is just a lively place and makes you forget your troubles for a few hours. Truthfully it is therapeutic and Jason, our server, is a kind soul.

While at the diner, the song, You Don't Own Me, came on! Literally this is a song from the 60s, but it has been used in movies too. Background.....You Don't Own Me is a pop song written by Philadelphia songwriters John Madara and David White and recorded by Lesley Gore in 1963, when she was 17 years old. The song was prominent at the time of its release in 1963 as it symbolized women's empowerment, showing the strength of a woman capable of standing up for herself. 

Frankly, I do not need a song to remind me I am strong, or that I can stand up for myself, or that I am my own independent self. What I love about this song is I picture the scene in this video clip below. I can't hear this song without thinking of these three women, dancing in their white suits, their bond and friendship, and to me hearing the song is freeing, it is empowering, and is a reminder.... I'm free, and I love to be free! I suppose free could mean different things to different people. But free to me means free to think, feel, and express myself! These are gifts that should be granted to every human being! 

Literally while hearing this song in the diner, I was ready to get up and start dancing. Music has a way of doing that to me, it evokes emotion and movement. What this reminded me today is that no matter how bleak things look, there is always music, and the notes and lyrics are gifts that can transport us figuratively right into the scene of this movie! 

Friday, February 7, 2025

Friday, February 7, 2025

Tonight's picture was taken in February of 2009. This was a typical physical therapy session in the hospital hallway with Mattie. He would definitely participate, but only after we did the exercises first. Especially if it were a new activity! So Anna (Mattie's physical therapist) and me were on the floor playing twister and Mattie was calling out the moves! My goal was to get Mattie engaged, socializing, and willing to try the necessary movements to rehabilitate. Therefore, if that meant getting on the floor, you bet I was going to do it!

Quote of the day: When your day is a museum of disappointments, hanging from events that were outside of your control, when you feel like your guardian angel put in his two weeks notice two months ago and just decided not to tell you. ~ Rudy Francisco

Today was another winner of a day! In a long line of NOT good days actually. By 5pm today, I truly had just about had it, and what I wanted to do was go upstairs, get into bed, watch TV, and not move for the rest of the day! There are times in my life now, when I feel that NO ONE understands me. NO ONE gets exactly what I am facing each day, and instead, I have people all around me, who just seem to add to the problem. 

Naturally in my house, there is NO going upstairs, NO resting, and certainly if I am not cooking and preparing food, there will be NO dinner. So that isn't a realistic wish to go to my room. What I find, as has been true all my life, that when I am overwhelmed, I revert to a whole bunch of self talk! Literally I talk to myself, both in my head and externally. Depending upon how bad the problem is, you will actually hear me talking! 

As odd as that may sound, talking to myself is therapeutic. I came across this NY Times article entitled, The Benefits of Talking to Yourself. You may want to glance at it, if you are a self talker like me! Research indicates that self talk influences our behavior and cognition, and there are two common types of self talk.... talk that is instructional and talk that is motivational. 

I can't say that I do much motivational self talk but I sure do a lot of instructional talk. For example, this week alone, while working on putting together the Foundation's Walk website, I landed up talking to myself, especially when I was working behind the scenes with our tech folks who were trying to instruct me on how to do something. I literally repeated the steps being conveyed to me, while I followed each one and revamped the website. But a type of self talk that isn't mentioned in this article is the self talk that is used for venting. If I did not talk to myself and verbalize a way out of an emotional problem or crisis, I most likely would be physically ill. That is how much stress I live with and navigate through each day.  

When Mattie was diagnosed with cancer and throughout his cancer journey, I would say that I was surrounded by his incredible healthcare team and our Team Mattie community. I most definitely was living with 24/7 life and death stress, but I never felt alone. Of course it was hard to feel alone, when we were living in a pediatric intensive care unit. However, once Mattie died, the isolation began! That was when my existence and my circumstance became frightening to those who knew me. I will ALWAYS remember friends seeing me shopping in a grocery store and literally they would turn around and run the other way! They did not know how to deal with me, so it was better to ignore me. I also had two friends who I knew for longer than 15 years, who also abandoned me. When I asked why they no longer talked to me, they literally said, "because your loss is making ME sick!" Truthfully you can't make this up, and I can't tell you how this compounded the loss I was already feeling. 

So when you lose your support network, what do you do? When you live a life that most people can't relate to, then what? I really do not have an answer to these questions and the answer maybe different for each of us. But while I try to brainstorm my way through these existential crises.... I talk to myself! Sometimes in talking to myself, I ask for God and Mattie's intervention. I ask for guidance and support, because at times things are just so overwhelming that I really do not think earthly support truly cuts it. The serenity prayer is never far from my mind, because it is simple and yet deeply meaningful....... 

God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

Thursday, February 6, 2025

Thursday, February 6, 2025

Tonight's picture was taken in February of 2009. Mattie was having a physical therapy session with Anna in the middle of the pediatric unit hallway. Seriously during that year, I truly believe Mattie got Anna to think WAY OUTSIDE THE BOX, in order to get him to participate in physical therapy. Anna understood that Mattie loved games, competitions, and challenges. But on his terms. This photo shows Anna demonstrating what she wanted Mattie to do! You can see she took her shoe off to show him! Mattie had a beautiful bond with Anna and Anna was an amazing support to me, especially after his extensive limb salvaging surgeries. There were days Mattie did not want to move or we couldn't find a comfortable position for Mattie, when Anna arrived in Mattie's room, things always improved. It is amazing how one competent, kind, compassionate, and insightful person can change your whole day around!

Quote of the day: Where words leave off, music begins. ~ Heinrich Heine

After a long day, I got my parents situated at home, so that I could drive to my therapy appointment. I hadn't been able to go for these sessions in over two weeks. Something always came up and I had to manage either an urgent care visit for my dad or taking my mom to an emergency doctor appointment about her foot. Frankly I have been debating..... why go to therapy at all? So much about my life is out of my control, so what good is talking about it accomplishing? I range about my feelings on this and my answer changes week to week depending upon my mood. 

As I was driving to therapy, I was listening to the radio. Something I no longer get to do given that I am shuttling my parents from one place to another when I am in the car. In any case, a song came on called, Tough People! Naturally the title caught my attention and then I listened to the lyrics. Do you think that hearing a song can change your mood? Can make you feel better about your life and situation? Well I do! Music, for me, is very therapeutic. In so many ways music evokes, expresses, and captures emotions that sometimes WORDS can't do! The song, Tough People has many verses, but the chorus of the song is........................

Oh, there's a whole lotta bad in the world out there
Oh, and it's hard to keep goin' when it don't seem fair
Keep on fighting when you're back's against the wall
Keep on getting back up when you fall
Keep on keeping your head held high
'Cause I still believe
Hard work pays off
Good beats evil

And tough times make tough people

Do I think tough times make tough people? 100%! I am living proof. I have experienced a whole range of issues in my life, not just one, many. Each grief and trauma builds on past losses and traumas. Yet I am still alive, I still care diligently for my parents, manage my entire household, and a run a non-profit. It does take a tough person to have survived many of the things I have endured. Of course being tough sometimes doesn't cut it! I could be as tough as I want, yet being tough couldn't prevent Mattie from getting cancer or dying. It couldn't prevent Sunny from getting cancer and dying, and it couldn't prevent my dad from getting Alzheimer's. But that's the thing, tough isn't about being able to prevent the impossible, it is about finding the courage, persistence, stamina, and HOPE to find a way to live with all the disappointments, all the horrors, and all the losses. So if someone wants to call me a "tough person," I view it as a badge of honor. 

The problem with becoming a tough person though is that it is possible in the process to shut out the world and others in it. It is safer that way! It is also a natural reaction to trauma, to feel others can't possibly understand or relate to our thoughts and feelings. It can leave you hardened. So how do I break that hardness? How to do I prevent from shutting down? Again, it depends on the day! Today it was hearing Drew Baldridge's Tough People! 

Wednesday, February 5, 2025

Wednesday, February 5, 2025

Tonight's picture was taken in February of 2009. Mattie was 6 years old and I snapped a photo of him right outside his hospital room. It was not unusual for us to decorate Mattie's door and it was a GIVEN that there would be decorations inside Mattie's hospital room (on the walls and the ceiling). Literally we traveled with bins that we would cart into the hospital with each admission. The bins were filled with Mattie art work, plates, utensils, laundry detergent, Mattie's favorite toys and books, and whatever else we needed for our long stays! Truly it looked like we were moving into and out of a home with each admission and discharge! We also traveled with many pajama sets too because Mattie's clothing of choice while in the hospital were pajamas. I did not fight his choice, because truly he had very little control over anything else. 

Quote of the day: You'll never find a rainbow if you're looking down. ~ Charlie Chaplin

As I sit tonight to compose this blog, I realize I am tired! I also acknowledge that I have had another long day of chores, running around, Foundation work, cooking, cleaning, and caregiving. It leaves me feeling down, not because of any one thing, but because of everything put together. Typically by the time I get to the computer in the evening, I have some notion of what I plan on writing about or reflecting upon. Tonight, I have NEITHER. 

Perhaps tomorrow will be better? I am not sure, as my days feel a lot like the 1993 movie, Groundhog's Day. The only difference, is I don't wake up to an alarm clock each day singing me Sonny and Cher's song, I got you babe! There are certain guarantees to my day, and they entail, chores, isolation, caregiving, managing crises, and at times when I am not absolutely inundated then fear creeps in about the future.

Any case, the one ray of sunshine in my day is I think I have diagnosed my mom's toe/foot problem! For about three days now, I have soaked her foot at night for 40 minutes in Epsom salts and then I wrap her toe. She feels like it is improving and frankly I am not going to stop this soaking and wrapping routine until I can effectively touch her toe without her screaming. I have consulted three doctors on this issue, and at the end of the day, I had to solve the problem for myself! Typical!!! 

All I can say is down days are abundant for all of us. But as tonight's quote points out, we must always hold out hope to see a figurative rainbow. 

Tuesday, February 4, 2025

Tuesday, February 4, 2025 -- Mattie died 780 weeks ago today.

Tonight's picture was taken in February of 2009. Mattie was in the outpatient clinic at the hospital and pictured with him were Jenny and Jessie, Mattie's art therapists. I have no idea what I would have done without these incredible women. True blessings! That day, they were working on designing a welcome sign to the inpatient pediatric units of the hospital. They wanted to add a child's handprint to the sign! Mattie wasn't interested, until they suggested.... a footprint! That notion, Mattie liked a lot! You can see Mattie's foot was being painted red and the final product is below. 

This sign is still on display at the hospital! Mattie died, but his footprint greets every family entering the pediatric units. These families may not know the story of this red footprint, but I will NEVER forget it. It is a legacy piece!

Quote of the day: The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well. ~ Ralph Waldo Emerson

Given what I balance each day, it is quite possible that you may think that Mattie Miracle isn't a priority. I can assure you that isn't the case! My world could be imploding, but there is NO WAY, I would ever forget my second baby, the Foundation. I always do some sort of Foundation work each day. Some days it is more labor intensive and other days it could look like answering correspondence from families in need of assistance. 

Today seemed like the kind of day that highlighted Emerson's quote! I wholeheartedly believe that being happy is overrated. In fact, I am not quite sure what that trite word means. But to live a useful life, a life that helps others, and makes a difference is what gives our lives purpose. Out of the blue, I received several emails today about Mattie Miracle. Emails from researchers and families. 

One researcher based in Boston told me that Mattie Miracle's research grant enabled her team to create a blueprint to help siblings of children with cancer. This blueprint is now in the process of being implemented at two hospitals! To hear that this blueprint wouldn't exist without Mattie Miracle is very humbling! The blueprint has the capacity to help siblings, who in many cases are the unforgotten ones in the cancer treatment journey as research indicates siblings of children with cancer have long term psychosocial issues.

Another email was from a dad whose child is a recipient of one of our M&M Wishes. His family has endured the impossible, as his daughter is facing an aggressive brain cancer diagnosis. His daughter wanted to go on a family trip to Great Wolf Lodge in the Poconos. When I told him we were granting this wish, his excitement could be felt through my computer. He views us as a blessing and the miracle his family needed. 

I know all too well how a gift of kindness can transform one's day! In fact, when Mattie was in cancer treatment, I kept a stash of gifts that his support community gave us. During difficult moments, and there were many each and every day, I would surprise Mattie with a gift. These gifts provided diversions from pain, from fear, and from thinking about cancer. I will never forget Team Mattie's kindness and generosity, and in a way Mattie Miracle's M&M Wishes program is a larger scale version of what our care team provided to us (NOTE: the M&M Wishes program started in 2022, and was created in memory of our board member Margy. The M&M stands for Margy and Mattie. In two years, Mattie Miracle has awarded $40,000 worth of wishes to 35 children with cancer). As I always say, Mattie was my life's greatest teacher. I learned so much from him, and his journey guides our mission, our activities, and our programs.  

So if I ever question.... what is my purpose? I need to pull out the many emails I have received over the years from the childhood cancer community! Their words and feedback matter to me. But that said, when I am in doubt, I always go back to Mattie. He is like my North Star, always guiding the way. He may not physically be alive, but his spirit and legacy are alive and well in his Foundation.