Tuesday, January 7, 2025

Tuesday, January 7, 2025 --Mattie died 796 weeks ago today. 

Tonight's picture was taken in January of 2009. This was the keyboard Jerry and Nancy (our amazing music volunteers at the hospital) gave Mattie. This keyboard would be transported back and forth between the hospital and home. In this particular photo, Mattie was home and one of his teachers from school came over to give him a piano lesson. Mattie really wanted to learn to play the piano, and I used to love when he would sit on our piano bench and compose pieces off the top of his head. He would take this very seriously, as he would sit on the bench, with his eyes closed, his hands on the keys and he would just start playing. It was almost as if the music was some how channeled from his brain to the keys!

Quote of the day: All reality about me now appeared to be in tatters, taken down and reduced to the civil war of its particles. I held on very, very tight indeed. Because in addition to that feeling, that disintegration, there was rage. I wanted to break something. ~ Sebastian Faulks

Tonight's blog posting was going to be a continuation of last night's, focused on memories! But I decided I am too distraught to discuss memories. So I will push that notion off until tomorrow night! As tonight's quote points out, when so distraught and feeling like you are going to have an emotional breakdown, what do you do? 

My dad's memory care center has been closed all week. I just learned that it is closed tomorrow too, as schools are still shut down because of the snow. When I tell you that I HATE snow, I am not kidding. Snow symbolizes isolation and being quarantined. For me, not getting out of the house is truly detrimental to my health. Yes I am a full time caregiver, but with snow days, my caregiving duties magnify ten fold. 

I was plugging away doing all sorts of tasks today from cooking, cleaning, to Foundation work. However, when I learned that my dad's memory center is going to be closed again tomorrow, I practically had a meltdown. I truly do not understand how my life has been torn to pieces. I do not understand how I am not married, and I do not understand how I did not see any of this coming. I am not sure I ever will and the angst this causes within me some days is immeasurable. 

I have devoted my life to those I love. Though I may not earn an income, I have never been idle. It isn't in my nature. Whether that be running Mattie Miracle (without taking a salary), to being a mom, wife, and family caregiver, I have always worked hard. But I have NO MONEY to show for it. Some how society views people like me as inconsequential. Not successful, and instead I am reminded often that, I have "never worked." All I know is, when someone tells me I have never worked, I want to jump off the roof. If I should list what I accomplish in any given day, this may give a person pause. 

My entire life feels like it has been out of my control. One of the key defining moments in my life, was when my dad took a job in California. Whether I wanted to move or not, we did in 1984. I really feel like that move changed the trajectory of my life. I missed the East coast and in essence the move to California influenced my college decision. I wanted to return to New York, and did just that for college. Then it was at college that I met my husband. But what if we did not move to California when I was in high school? What if I never went to college in New York? Do you ever play these what if games? While walking through one door in life, we truly do not know what will come next and the consequences of that simple decision. But I have learned the hard way in life, that every decision has consequences. Most of them for me have been negative.

I am saddened and disillusioned that I face life alone. That I face each day with enormous roles and responsibilities, and frankly whether I am caregiving or not, I feel that my life is over. The future I may have imagined (and trust me it took YEARS for me to come to terms with a future without Mattie) is gone. I am tired, simply tired, and feeling distraught enough to have a breakdown. But in my household my needs, have never taken precedence.  

Switching gears..... given that I knew we would be home for days because of the snow, I bought a roasting chicken. I cooked it on Monday, and we have been working our way through this bird.

This afternoon, I used the chicken carcass to make homemade soup. My parents love soup in the winter months. So I always try to make sure I have a supply on hand. 

Monday, January 6, 2025

Monday, January 6, 2025

Tonight's picture was taken in January of 2009. Mattie was home between hospital visits and that day he transformed a Styrofoam box into a bicycle helmet. Truthfully sometimes Mattie would just make me laugh. His creativity had no bounds. I can't tell you how many cardboard boxes he transformed during the year he had cancer. Mattie was remarkable ! He never lost his appreciation for life and trusted and loved us implicitly. 

Quote of the day: The purpose of life is not to be happy. The purpose of life is to matter, to be productive, to have it make some difference that you lived at all. ~ Leo Rosten

Last night my parents wanted to watch something on Netflix. Typically that isn't a problem, as I click through the app on TV and it works without a hitch. Last night, I was locked out of the account. Every technology issue in the house is a crisis, and the only one dealing with any crisis that arises is ME! I went to my computer to log onto the Netflix account and what I was seeing made no sense! So that led me to get on a Netflix chat at 9pm. I am SO SO grateful to anyone who helps me. I can't tell you how many chat people write and tell me that I am the nicest person they have worked with in a long time. One person said, having customers like me, reminds him why he does what he does! 

I was chatting with the Netflix person for an hour! We got down to the bottom of the problem and now my credit card and account are matched up with each other. Literally once we did this match up, my Netflix account magically started working again! I thought I caught all change overs like this in the divorce, but I on occasion find outliers like this, and thankfully I have perfected the art of persistence and asking questions!  

Last night I had trouble sleeping. Why? I was getting worked up about the snow storm! That may sound silly, but being quarantined at home is hard on me and then I worried.... would I be able to shovel all the snow? That kept me up for a while, but I eventually fell asleep! What woke me up was the sound of neighbors shoveling their driveways. When I looked out the window, I saw this.... a total white out! It may look beautiful, but to me snow equals isolation! 

I jumped out of bed, fed Indie, and immediately went outside to see if I could manage this snow. I started shoveling our side steps and front walkway. Literally after that, I said.... NO WAY! I couldn't do any more. The snow was wet and very heavy. I also can't injure myself, because if I do, my whole household would be crippled. 

I am SO SO LUCKY! I had neighbors come over today and they shoveled and used their snow blower! That may not sound like a big deal, but it was to me. No one is required to help me, so when I have people looking out for my well-being, it lightens my spirit. It makes me feel less alone in this storm. 

If you read last night's blog, then you know I was dealing with my own existential crisis. The crisis of being alone, not having Mattie, not having my husband, and my inability to leave a lasting legacy. This morning, while jumping from one task to another, I received a text message for one of my support angels. Part of the message is going on tonight's blog and the second half will be applied to tomorrow's blog, as I continue to reflect on my discussion of memories. So part one of the text message said...........

I've been thinking about your blog last night. Your memory keeper is your blog and your writings. The blog is absolutely a poor substitute for Mattie, but your words have so much value! You have a legacy in the work that Mattie Miracle has accomplished and how it continues to impact families and lives. The written words you have written to all of us --- your very real pain, feelings, and joys. These words will last longer than some memories will with people. Mattie and you will not be forgotten. 

When I think about memories, I typically associate them as something carried on by PEOPLE! I admit I am biased, as I viewed Peter and Mattie as my main memory keepers. But as my support angel reminded me, memories can be carried in many forms and by many people. Not only by who we are related to! Very true! I have had friends and even my therapist try to get me to think beyond my narrow lens of my immediate family. Naturally if I account for all the special and amazing people in my life, my network is large, interwoven, and strong. I do not discount this at all, and I am grateful for it, but when facing catastrophic losses, my natural reaction is to close down, and isolate. Which is why when I read today's text message, I realized.... yes of course! My memories are captured in this blog. Mattie's life is captured in this blog! My perspectives, thoughts, feelings, hardships, and successes are captured here too. Why is that important to me? It is because for each person who reads this blog, you become part of my memories, you may share a story or two with people you know, and in essence that is how Mattie's legacy and my journey of being his mom will live on forever. Words are powerful, words express meaning, and words don't die. Words written in this blog serve as my institutional memory. I am grateful for today's reminder, as these reminders help me when I am in despair.  

Sunday, January 5, 2025

Sunday, January 5, 2025

Tonight's picture was taken in January 2009. We took Mattie to New York City to start his experimental treatment. In between hospital visits, we toured the city with Mattie. Getting around any city in a wheelchair, provides its challenges, but we made it work. It was on that trip that Mattie fell in love with the NYC yellow taxis! This photo captured our adventure up to the top floor of the Empire State Building. An experience that Mattie talked about for months. 

Quote of the day: Forgetting past memories doesn’t mean that you were not a part of it. You build those memories and your loved ones know it well. ~ Caroline Lee

A good friend and I were writing back and forth to each other today. In the process, we chatted about living with Alzheimer's Disease. When caring for a parent with this disease, I can assure you each day has its own challenges. My dad can ask me the same question 10 to 12 times in less than thirty minutes. Most days I answer the repetitive questions, or have him work toward the answers. On a rare occasion, I get frustrated. Not at him, more frustrated with my existence, as I do not live a normal life. 

I try to always remember that my dad, the man I always knew, is in there somewhere! Though he is a shell of his former self, who he is, hasn't been forgotten by me. I am his short and long term memory. He is very dependent on me for everything. Everything from showering, dressing, toileting, eating, medication management, keeping his schedule, managing finances, and shuttling him to appointments. It is a large responsibility and it is hard to go from being my parent's child, to the adult on duty at all times. When I think about what I survive in any given day, alone, it is amazing I am still standing. 

In 2017, the Alzheimer’s Association completed an extensive survey on the effects of Alzheimer’s on the family caregiver. The study confirmed what many who provide family care might have guessed, which is that the effects of dementia on caregivers aren’t just physical. Caring for a loved one with dementia or Alzheimer’s impacts nearly all areas of life, from our time spent with friends to the family finances. An estimated 5.8 million people in the U.S. live with Alzheimer's disease and related dementias. By 2060, that number is predicted to rise to 14 million.

Did you know:

• More than 90% of community-living adults 65 and older with Alzheimer’s disease rely on the help of family and other unpaid caregivers.
• In 2021, caregivers of people with Alzheimer’s disease or other dementias provided an estimated 16 billion hours of informal (i.e., unpaid) assistance, a contribution valued at $271.6 billion.
• The median caregiving time frame is about five years and may span an extended period, reflecting the long course of illness.
• Relationships between spouses/partners were strengthened the most from the experience, with 81% believing that “being emotionally there for each other” was a source of strength they drew upon for caregiving (Alzheimer's Association Survey, 2017). 
• Unpaid caregivers experience their own emotional, physical, and financial impacts.

I am my family's member keeper. I manage and hold my parent's memories, my memories with them, my own memories, my memories of Mattie and his incredible life, and the memories of my marriage. Truthfully it is a lot of memories to manage on my own. The beauty of memories is to share them with someone. After all, memories unite and bond us with our loved ones. 

Having lost Mattie, the memories of me, my life, my parents, and my marriage die with me. This is a very profound and disturbing reality! Truthfully there are times I can't even go there because it makes me feel so disillusioned, that I ask, what on earth is the point to all of this? We like to think that our lives are important, that we serve a vital purpose, and that our contributions on earth will always be remembered! This is definitely true for my parents, because even if they don't remember, I do! I am there to remind them, I am there to carry on their legacy. But the same is not true for me, and I would say as challenging as managing dementia care is, what is most profound and will always be is the loss of Mattie. This loss changes shape and evolves with every developmental stage in my life. Without Mattie, I have no legacy keepers and that is an earth shattering and depressing notion. I continue to grapple with Mattie's loss, but with the decline of my parents, the purpose and meaning of my life weighs heavily on my mind. 

Saturday, January 4, 2025

Saturday, January 5, 2025

Tonight's picture was taken in January of 2008. It is hard to believe that six months later Mattie was diagnosed with cancer. That weekend, we went for a walk in the woods. That was a typical occurrence for us, as Mattie loved being outside and exploring. It did not matter what the weather was like. If you look closely you will see that Mattie found a stick and was carrying it! Mattie enjoyed taking a piece of nature home with him practically on every walk. There was a time in which we had piles and piles of Mattie's collections outside by our deck. Everything from stones, pinecones, leaves, and of course sticks. The beauty of Mattie and his love for life was always transparent in everything he did. 

Quote of the day: Dogs are our link to paradise. They don't know evil or jealousy or discontent. To sit with a dog on a hillside on a glorious afternoon is to be back in Eden, where doing nothing was not boring--it was peace. ~  Milan Kundera

I had cancelled my dad's physical therapy appointment for today, because he and my mom are dealing with colds. My notion was I would going to try to sleep later today, because every fiber of my being is wiped out. At 8am, my mom was outside my bedroom door.... knocking and in a panic. I seriously thought there was a medical emergency. When I told her to come in so I could hear what the problem was, she handed me her phone, as she got some sort of alert. Mind you I was half out of it. I grabbed her phone but I couldn't see the alert. With all the commotion, Indie came into the room and was walking all over the bed and all over me. It was clearly TIME FOR ME TO GET UP! It is hard to be jolted awake and to be the only one in the house who can make decisions and put out figurative fires. 

My hope was I was going to work on putting Christmas decorations away today! It never happened. I had ordered supplies for my dad and they were delivered this morning. One of the boxes was as big as me! As I was bringing in all these boxes, I thought I saw something blond out of the corner of my eye. When I went to the window, I could see it was a dog. 

Sometimes my neighbor's dog gets out and at first I thought it was her. But when I went outside, I did not see a dog. Then I thought.... okay, Vicki is losing it! She thinks she is seeing dogs! I shuck that notion away and started walking around our front yard. Sure enough I found an adorable Golden Retriever. I knew immediately this wasn't my neighbor's dog! But frankly I did not know who she was because I never saw her before.

As soon as this cutie saw me, she came bolting over to me. She was one big LOVE! A gentle soul. She loved attention and wanted to go inside. In fact, she walked me right over to the front door. So I brought her inside our house. She was SO SO excited! She checked out every room, greeted my parents, and chased Indie! Indie was NOT happy! She ran upstairs to the top floor of her cat perch! Safe and sound!!! 

While interacting with this beautiful dog, I got her calm enough to check out her dog tags. I immediately called her owner and explained that I had her dog. She was stunned that her dog escaped her backyard and told me she would be right over. Mind you she lives about four blocks away!!! 

This is Paisley the dog. I put her on Sunny's leash and I walked down my street and met up with her owner. I would like to say that Paisley and I got along well, but frankly I think Paisley most likely gets along with anyone. She is that loving. 

On Friday, January 10th, Sunny will be gone from my life for ONE YEAR! I honestly do not know how that happened. I can't believe I have been without my best companion for a whole year. Sunny taught me how to be a dog owner and all about the ways to treat and interact with a pooch! I do not believe in coincidences! 

Why did Paisley show up at my doorstep today? I believe she was sent to me by Sunny. It is a reminder that my Sunny is also with me in spirit and sees everything I am enduring.

 

If you have never owned a dog, all I can say is, I am sorry! There is nothing like being a dog owner. Dogs are just sweet and unconditionally loving souls. They want your love, they want your approval, and they are loyal and trustworthy companions. We can learn so much from our furry friends. Though Paisley wasn't with me for long today, the energy she inserted into our home, brightened my day in indescribable ways. 

When we first moved into this house in 2021, Sunny escaped from the backyard. I can't tell you how frantic I was! We knew no one and had no idea how to handle this situation. We walked and drove for hours looking for Sunny. I put out messages on Next Door and our local neighborhood listserv. One neighbor, a mile away, did respond saying that she saw Sunny walking around but couldn't catch him. The beauty of Sunny is he found his way back to us! I will never figure out how, since it was a new neighborhood for him too. But I guess the power of scent and home were calling him! 

When I saw Paisley today, my immediate memory was the day Sunny escaped from the backyard. I pictured Paisley's family being very worried and upset, which was why I immediately called. 

Mattie always wanted a dog in his life. Fortunately he experienced this special bond with my neighbor's dog, JJ. But all I can say is if Mattie met Sunny, it would have been love at first sight. At times, I really felt Mattie was channeling himself through Sunny! As Sunny loved looking deep into my eyes, JUST LIKE MATTIE. Oh Heavenly Dog!!! 

Friday, January 3, 2024

Friday, January 3, 2024

Tonight's picture was taken in January of 2009. Mattie was home and completed his trip to New York City, to start his experimental cancer treatment. One of the activities we did with Mattie, was we took him to the Empire State Building! To the top floor! Mattie had an amazing time, and we made memories I will never forget. After our tour to the top, we went to the gift shop, and Mattie wanted to buy this erector set. To this day, this model remains in my office. It symbolizes our trip together, it reminds me of Mattie's incredible strength and spirit, and it reminds me of a better time when we were a family. 

Quote of the day: Nothing is ever really lost to us as long as we remember it. ~ L.M. Montgomery

I have been reflecting a lot on the whole notion of memories. I don't know about you, but I for one have a brain that locks in on negativity over positivity. The recall of negative memories has been said to be linked to an evolutionary defense mechanism. After all, if you are living out in the wildness, remembering what animals you have come across that have threatened your safety, would be a good memory/skill to have. If you can remember your triggers for danger and fear, then you are most likely going to be able to avoid an attack and survive. But for us humans, dwelling on negative memories can sometimes lead to anxiety and depression. I have seen this within myself, both with Mattie's diagnosis, death, and my divorce. 

I was reading a study published in 2021, that had 297 participants who took part in a series of memory tasks where they were asked to recall positive aspects of a negative memory. This recall was done either through writing or verbally, over periods of 24 hours, one week and two months. The researchers observed that through these tasks, the participants were able to shift the focus of their negative experiences to more positive ones. This led to beneficial changes in how these events were remembered, even two months later.

When I read this, it confirmed ONCE AGAIN, why I write this blog! I may not have taken part in this memory study, but I can definitely say that by writing for 16 years, it has helped me manage and cope with all the fear, anxiety, terror, exhaustion, trauma, and grief associated with Mattie's diagnosis and death. If you go back and look at the blog in its early years, you will see that I reported out (rightfully!!!) the negativity associated with Mattie's daily struggles, the horrors of his treatment, and the treatments side effects. Of course when Mattie died, for years, I was struggling with what had happened to Mattie and floundering to figure out who I was, why I was still alive, and whether there was a point going forward. As I kept writing, I was able to absorb all that pain, and at the same time, look at photos more comprehensively and see the beauty of the situation. 

What could I possibly mean? What beauty is there in childhood cancer? Well NOT the disease itself, but the incredible support and people along our journey! 

Well look at this photo! This was Mattie's last admission to the hospital. Mattie chose to go back to the hospital to die. He did not want to be at home, because he felt that people in the hospital could help him more effectively. I also think he understood that we needed the support of our health care team as well. Such a smart boy. As you can see, Mattie was sitting in bed. He had a black box, which was a pain pump attached to him and he was on oxygen. In 2009, when writing about this moment, and for several years there after, I was absorbed in the negativity of the moment, the horror, and the pending grief! Over time, I am not saying that feeling went away, it NEVER will, but what was added to that feeling was also a positive feeling. What was positive? Jenny, the young woman you see in the photo. Jenny was Mattie's art therapist! An absolutely phenomenal professional and person. That day, like so many others, Jenny was working her hardest to redirect Mattie and to engage him in a life affirming activity... playing with his dinosaurs. It takes a very special individual to be able to sit with us during this life threatening moment. What I see in this photo now (besides pain, grief, and pending death) is camaraderie. I was NEVER alone. Mattie had a way of attracting amazing people into our lives and Jenny is one of those gifts. Would I have been able to get to this expanded memory without years of writing? Absolutely NOT!

Switching from memories, I know many of you are writing to me asking HOW AM I? You have been used to me reporting out on my days. Well today was a day that I actually was proud of myself! Why? Well I need to find a new health insurance plan for myself. This was NOT something I ever had to figure out for myself before. So because this was a new and scary notion for me, I have pushed the problem out of mind for weeks. But as I mentioned my mind focuses and worries about the negative and to me, potentially being without health insurance in the spring, sends me for a panic. I have been trying to investigate how to find a health insurance plan now for over a month. My neighbor suggested I hire a health insurance agent. After looking into that, I said NO! I do not want to relinquish control of my healthcare insurance choices to someone else. Instead, I want to be in the driver's seat, knowing exactly what is out there and what my options are. 

So that meant I had to find out about whether I wanted to get healthcare through the market place or off market. Today I pushed through my fear and reached out directly to a health insurer. I was connected to a healthcare insurance agent that works directly with a big named health insurer. She was a God sent. Really an angel. She spoke to me for an hour! An hour I tell you!!! She educated me about the market place (which really ONLY works for people who are employed, so I have learned!), and after much discussion, we moved to off market options. She was kind enough to look up each of my doctors to make sure they were in-network and then she gave me her direct email. She sent me all the documentation we discussed by phone and I have 30 days to make a decision. 

After speaking with this kind woman, I called another well known health insurer. I wanted to verify the information about market place versus off market place insurance and to see the cost of an equivalent plan through this other company. Well this second health insurer representative was a piece of work. The exact opposite from the first representative. However, that said, she did confirm that I had the correct information about market place versus off market place and then she tried to push a plan on me that I was NOT comfortable with. A plan that would limit my choices on providers and access to specialists. In fact, we got into an argument over this, as she said, why wouldn't I want a plan that offers a lower premium per month? Sure who wouldn't want a lower premium per month, but what gets compromised in the process? I think my numerous experiences with healthcare has instilled in me that a patient needs as much control and access to care as possible. 

My point to telling you all of this is it has been more than a year of firsts for me! Doing anything that is new is scary and frightening. But I pushed through that uncomfortable feeling today and advocated for myself. I am great at advocating for others, but I turned that skill inward today, and what I figured out is YES, I can learn things that I have NO IDEA about, I can ask intelligent questions, and I can make sound decisions for myself. Well that was an empowering moment, and I assure you most days I don't feel empowered and I don't feel in control of my own life. So I acknowledge the moments when I see the positive. 

Thursday, January 2, 2024

Thursday, January 2, 2024

Tonight's picture was taken in January of 2009. We were staying at a hotel in NYC. Why? Because Mattie was scheduled to start an experimental treatment at a well known cancer center. When we checked into the hotel, the front desk took one look at us and Mattie, who was in a wheelchair, and they immediately upgraded us from a regular room to this incredible suite. The suite had fantastic views, a balcony, and a kitchen. Mattie was so thrilled that he was inspired to get out of his wheelchair and attempted to walk around. Of course, because of Mattie's limb salvaging surgeries, he couldn't walk far and definitely couldn't walk without holding on or bracing onto things. But in true Mattie spirit..... He did it! 

Quote of the day: Authenticity is a collection of choices that we have to make every day. It's about the choice to show up and be real. The choice to be honest. The choice to let our true selves be seen. ~ Brene Brown

When Mattie was diagnosed with cancer, he was given a book entitled, Journey Through Heartsongs. The book was written by a child who shared his name.... Mattie Stepanek. Mattie Stepanek, was local to us, and was 13 years old when he died. He wanted to be remembered as a poet, peacemaker, and philosopher. He even published seven best-selling books of poetry and peace essays. I believe that the hospital staff introduced my Mattie to Mattie Stepanek, to illustrate to him that even with an illness, one is able to live a productive and meaningful life. It was meant to inspire and empower my Mattie. This book, written by such a young author, remained a part of me over all these years. 

Why am I bringing this up? Because while reading about President Jimmy Carter's life and his passing on December 29th, I learned that he knew Mattie Stepanek. In fact, Mattie Stepanek's last wish was to meet President Carter. If you haven't read this story, check it out, it is very touching! Mattie's Stepanek's mom credits the bond between her son and President Carter, for the reason that her son never gave up on life. 

President Carter understood the power of the human connection, and though he transformed Mattie Stepanek's life, in the process this friendship had a profound impact on him. That is the beauty of what can happen when we open our hearts and minds to our fellow human beings. When I read the story of President Carter and Mattie Stepanek, it triggered many memories for me. Memories of countless visitors who came to the hospital to interact with Mattie. I also believe that it is due to these visits that Mattie was inspired to keep on fighting!

All sorts of wonderful people came to visit Mattie in the hospital. Friends, family, classmates, teachers, school administrators, and volunteers. Here are a few examples............................... 

Long time blog readers may recognize the 'Magic Man.' Bob was the head of the lower school at the time and learned the art of magic from his own dad. Bob passed along these gifts to his students. That year, he took Mattie under his wing and visited Mattie monthly in the hospital to teach him to perform magic tricks. I can't tell you how vital his connection with Bob was, as Bob taught Mattie a unique skill that other people didn't have! That was a big deal to Mattie! Though Mattie was limited with his gross motor movement, his fine motor skills were intact. Mattie took to magic and magic gave him an outlet to express himself and to connect with his health care providers. Mattie did not always want to talk, but he was happy to perform a trick or two. Which of course naturally led to conversation. But my point to this story, is the connection went both ways. I believe Mattie had a profound impact on Bob's life too, and to this day, Bob renamed one of his magic tricks.... the Mattie Brown. 

This was Sally the Story Lady. Sally was an amazing lady. She would come to the hospital once a month and tell and act out stories. She always brought props! Mattie took to Sally like a duck to water. Which was saying a lot, because not all volunteers resonated with Mattie. No matter how Mattie was feeling, if he knew Sally was in the pediatric unit, he wanted to see her. But in turn, Sally loved Mattie. I think Mattie inspired her creativity, and together they were the dynamic duo.

This was the chemistry club. These university students would visit the pediatric units on Fridays! Literally we loved Fridays. Chris, the head of the club, was phenomenal. Just like with Sally, if the Club was in the Unit, Mattie wanted to participate. Some days the Club came and performed in Mattie's small hospital room. After Mattie died, Chris contacted me to tell me how much his time with Mattie meant to him, and how Mattie inspired him to decide to go to medical school. 

This lovely lady, was Mattie's technology teacher, Mary. When Mattie was in kindergarten, he would come home and tell me all about Mary! He thought she was special and a kind person. Mary visited Mattie monthly in the hospital and she even gave him his own laptop to work on. While Mary was visiting with Mattie, I would leave the room and get a bit of a break. In the process they bonded together and they created many beautiful artistic masterpieces on the computer. Mary even captured Mattie's voice during many of these sessions. Which became legacy pieces for me. 

I honestly could fill up this entire blog with photos and stories of the countless visits Mattie received during his 14 month cancer battle. But here's the thing..... we all have the power and ability to transform someone else's life for the better. It doesn't take money or special talents and abilities. What it takes is time, effort, commitment, and emotional investment. I saw this first hand with all of Mattie's devoted visitors. These visits were crucial to our daily routine. It is very hard living on the edge, making life and death decisions 24/7. Having these wonderful diversions took our minds off of cancer for a few minutes to an hour, and in that snippet of time, we felt more normal. Mattie could be Mattie and Vicki could be Vicki.  

If you have never had the opportunity to volunteer or work with someone like Mattie, who is dying, then I am sure what I am going to say may sound odd. But I have found that people who know they are dying, are actually very inspiring. They have an appreciation for the frailties in life and they seem to have a greater clarity for what is important and should be valued. What I do know is I will never forget any of our visitors and it is my hope that hearing these Mattie stories, instills in all of us that we have the ability to make a difference in someone's life each and every day. To me that is what makes life worth living.... the art of helping others, because it is through helping others that we ultimately help and improve our own lives. 

Wednesday, January 1, 2025

Wednesday, January 1, 2025

Tonight's picture was taken in December of 2008. Mattie was in the hospital for treatment. Sitting next to him on the floor was Tricia. Tricia was Mattie's favorite nurse. Tricia is the kind of quality person that you want by your side if you are sick. Not only is she highly competent but she is also compassionate and an amazing family advocate. I remember one day while in the PICU, Mattie was in the hallway, and he saw Tricia. He started SCREAMING.... Tricia, Tricia, Tricia! From across the unit, Tricia came flying, as we all thought something was very wrong with Mattie! When Tricia got to Mattie, you want to know what he said to her? He said .... I LOVE YOU! Mattie did not express such things unless he meant it. The beauty of Mattie and the special bond between Mattie and his amazing nurse, Tricia. 

Quote of the day: The biggest reason to be mindful of what we wish for is that we’re prone to believe we’ll be happier once we acquire what we desire. Social science research has proven that thinking this way is a setup, because the more we get, the more we want. We believe that getting what we wish for will be the answer to all of our problems, granting us lifelong joy and satisfaction. But happiness happens to be an inside job; without knowing how to cultivate it internally for ourselves, no amount of money or external rewards will allow us to experience or maintain it. ~ Denise Fournier

At midnight last night, I could hear fireworks from outside my bedroom window. My parents were already sleeping and frankly I blocked out the sounds and there was NO WAY I was going to watch the festive activities at Times Square on TV. Truly it wasn't until my lifetime friend, Karen, text messaged me a "happy new year," did I associate the fireworks with 2025. I am grateful for friends who orient me and pull me outside of my current thoughts of despair. Now that the calendar has turned over to 2025, what does the New Year hold? Of course there is the ever present notion of New Year's resolutions, or we may hope or wish for something this year. 

In fact, have you ever heard someone say to you..... be careful what you wish for? This is actually a powerful statement and filled with meaning. Because sometimes what we wish for, or think we are wishing for, isn't really what we want at all! What do I mean? Well when we are focused solely on one thing, we may not consider how our lives will change when we get what we are wishing for, in fact we may end up less happy in the process. Here's the classic example..... think about people who win the lottery! Sounds good doesn't it? You may wish for such an occurrence, but you have to wonder why are the majority of lottery winners depressed, broke, or suicidal? Because what we WANT, what we WISH for has consequences that we may NOT BE THINKING about fully. Think about how dynamics between friends and family change if you win the lottery! Think about how the winner has to constantly be on guard over one's safety and security! Interestingly enough research in the field of positive psychology has demonstrated that the more we want, the more dissatisfied and unhappy we tend to be. WOW!

Okay so what does all this mumbo jumbo mean? Do we not make wishes? Do we not hope for things? The short answer is of course we do! This is part of maintaining our human spirit, however, wishes and hopes can't be all consuming, because if they are we no longer are present focused or living and appreciating the moment. When going through a crisis, THINK ABOUT YOUR OWN LIFE, are you future focused? Are you making wishes? Are you thinking about what will happen a year or ten years from now? The answer is ABSOLUTELY NOT. When in a crisis, you may not know what the next minute will look like, much less a year from now. The only way to cope in a crisis is to live in the here and now.

What I learned when Mattie was diagnosed with cancer was to live in the present moment. This was a crucial life lesson and skill I developed in 2008! I dropped the whole notion of being future focused. Back then this separated me from most people I knew, as it may even today! After all, most people I know maybe thinking about their children in college, their family vacations, anniversaries, celebrations, where they are going out to dinner, a show they will go see, or what I refer to as the more "normal" things in life. But life for me doesn't look this way, and it hasn't for many, many years. Certainly being a divorced woman, who is caregiving around the clock for her parents, there is NOTHING normal about my life. I do not meet with friends, I do not go on vacations, I do not have celebrations, and one day looks very much like the next day and the next day after that. 

If you ask me to think about the future (and believe me I have many people bringing up this notion with me almost on a weekly basis), my answer most likely is.... I can't! I am not trying to be curt, and I am not trying to be obstinate. I am simply being Vicki, a person who has absorbed many traumas in life and my life lesson is don't set yourself up with unrealistic resolutions, hopes, and wishes, that may produce a let down if you don't achieve them! I am not suggesting be stagnant, but be intentional and purposeful. We have enough to bring us down on any given day, so why should we be adding unrealistic hopes, wishes, and expectations to the list. 

In my own life, when I was much younger, I was guided by hopes, dreams, and wishes. That did not get me too far. When I got married, I had hopes for a long future with my husband and raising Mattie. Both of those hopes have vanished. Drastically, my life has crumbled and at times I feel like my identity has crashed and burned. Because of losses, trauma, and grief, there are words that have been permanently removed from my vocabulary. Many of you who are long time blog readers know, don't use happiness and joy with me. They are trite and just sugar coat the reality of life. So how do I manage and cope with this New Year? The answer is I am not sure, and I have to be okay with that! I take it on a day to day basis, I am focused on caring for my parents, keeping them stable and well, and as always I look to my Mattie for inspiration, direction, and guidance.

Tuesday, December 31, 2024

Tuesday, December 31, 2024 -- Mattie died 795 weeks ago today.

Tonight's picture was taken in December of 2008. I will never forget this moment in time. Mattie was getting admitted to the hospital and was running a fever. He could hardly keep his head up. Yet Santa and Mrs. Claus were visiting the children. When they came into Mattie's room, he desperately tried to keep his head up, to chat, and to receive their gifts. As soon as Santa left, Mattie collapsed back into the pillow. 

Quote of the day: It's so much darker when a light goes out than it would have been if it had never shone. ~ John Steinbeck

There are times in each of our lives when we are faced with dark questions and depressive thoughts. It is part of the complexities of being human. Such questions as..... is this as good as life gets? How did my life turn out this way? Or how about, do I have the strength and determination to manage through another day? If you haven't had any of these moments of doubt, please write to me because I want to know your secret! WHAT AM I MISSING?

What do we do when faced with challenges, adversity, or feel like we are drowning in a sea of angst and depression? I am sure the answer differs for each of us. Do we call someone, email a friend, take a walk and try to refocus, or engage in an activity to change one's scenery and thoughts? All of these are plausible coping mechanisms, but what if they don't work? I can understand how people can be so depressed and/or traumatized that they resort to drinking, using drugs, or thinking about suicide. One has to truly understand pain, in order to have the appreciation and understanding that another person may feel like there are no other options in life. 

The holidays are a mixed bag and certainly with the closing of a year and the ringing in of another one, this may not bring joy or happiness. After all, saying good-bye to another year, also means saying good-bye to another year without our loved one in it! I admit that there are times when I do not see a way forward. There are just too many losses that I am contending with and naturally I have found that one loss builds upon the other. 

When Mattie died, for example, my world as I knew it ended. The notion that I was going to be his mother, watch my son reach and complete many milestones, and share in all his firsts (such as holy communion, high school graduation, college, dating, marriage, and grandchildren) vanished. I remember there were days that I couldn't function. I stayed in bed, watched Hallmark movies all day, and was working on handmaking Christmas decorations for my friends (yes this photo highlights some of my crafty work in 2009!). That was as good as it got for months. 

But then what? How did I pull myself out of the depths of despair? Well it wasn't a quick fix! I had to build myself back up piece by piece and find myself again. It meant finding out who was Vicki, what is my identity, because the one of being Mattie's mom was stripped away. Yes I will always be Mattie's mom, but it isn't quite the same parenting a memory as it is parenting a live child! 

So what worked for me? What do I do when I am besides myself and at a breaking point? Writing, writing, and more writing! Why do you think I have 16 years worth of blogging?! In addition to writing, there is YOU! YES YOU!!! The people reading this blog. I may not know you, I may not know your name, and I may not have ever met you! But something I am writing about is resonating with you and then there are times you comment and let me know your thoughts and insights. It is your interest, your kindness, and your devotion to my journey that ultimately has made the difference in my life. 

Why am I still here after losing Mattie? It is because of this blog! It may sound silly, but for me it is not! The blog shares my journey throughout many years and it is my space where I share Mattie moments, Mattie memories, and my thoughts and feelings. Certainly the blog has morphed like I spoke about last night, but this blog is not just a place to learn about the emotional and long term impact of childhood cancer, NO! It is a personal journey, it is my journey, a journey of resilience, courage, fortitude, and writing from the heart. In the process of my writings, what always amazes me is my words bond me with readers. You all seem to truly understand me, you know my core values, my interests, and most of all you know and have gotten to love my Mattie. If this is the extent of what I accomplish in life, then I have been successful. If you look at the moon and say, THERE'S A MATTIE MOON, or you see a sunflower, and think that is a team Mattie symbol of love and community, or if you look at cardboard boxes and wonder.... what would Mattie create? Then I have been successful! My mission is always first and foremost to share the beauty of Mattie with my readers and through the sharing of memories, telling his story, and sharing his life with others, that builds me back up and has helped me re-establish my identity after great tragedy. 

As for my Mattie Miracle Cancer Foundation work, well that is also a lifetime commitment! I am well aware of how the Foundation helps countless children and has changed the way cancer care is provided to all children with cancer. In that light, I received a message this morning from a dear friend. She acknowledged my undying commitment to children with cancer and then said.....  I see you and you matter! I let those six words swirl around in my head. What better words to receive? This was my New Year's Eve gift to know that in the eyes of my friend I matter. 

On dark days ahead, when you too may not know.... will I make it until tomorrow? Pause and remember to me, my blog reader, YOU MATTER. You make my life worth living and you are my Mattie legacy makers. 

From my family to yours, my thoughts are with you as we face 2025 together. 

Monday, December 30, 2024

Monday, December 30, 2024

Tonight's picture was taken in December of 2008. Mattie was home from the hospital, between treatments, and his art teacher surprised him with this creative wreath. Each leaf of the wreath was designed by a first grade student at Mattie's school. Some of the leaves had messages on them. This wreath was precious and for months it hung on the back of our front door. It was a beautiful symbol of love and community. 

Quote of the day: Sadness takes its own time. It can’t be hurried along. It can’t be rushed. It moves heavily across the landscape of the heart until time and love can carry it further into the distance. ~ Melvina Young

I know some of you panicked last night, when you got a pop up message that the blog went "private." After great introspection, I made the blog public again tonight. Why? Well a friend said to me today.... nothing can change the truth of who you are! Somehow that was exactly what I needed to hear. I started writing this blog for the community, and I will continue to write this blog for the community. I have been told by many readers that my writings touch their hearts and minds, and it is this honest content that unites us. The one positive of shutting the blog down last night, is that I got to interface by email with some of my long time blog readers. Many of whom I have never talked with before. Do you know I have readers in Canada, England, and Germany?! Truly I am stunned and at the same time humbled! But then again, this is the power of Mattie and perhaps of a mother's love. Nothing could be greater! 

In times of great turmoil, we all can stray from our mission. Mainly because we are that hurt, that frustrated, and that stressed out. In these moments of being totally lost, who do I turn to? My compass.... Mattie Brown. 

This blog was created for my greatest and true love..... Mattie. Since its inception it has detailed Mattie's cancer journey and the fierce and determined nature of his parents. When Mattie died, I could have stopped writing the blog. After all, the blog was designed to inform our care community about Mattie's day to day progress, issues, and how my family was coping. Without Mattie, there really was no driving force to the MattieBear Blog!. It was at that point that I could have let this legacy piece die! But somehow I couldn't let it go. 

Letting go would mean somehow saying good-bye to Mattie. NOT HAPPENING! Instead, I pivoted in 2009, and the blog became my lifetime journey of facing life without my child. Which meant that I wasn't only talking about childhood cancer, but various aspects of my life. So it became a written reflection that was even more personal than it was when Mattie was alive. As so many of you know, the blog highlights happy moments, sad, depressing, and traumatic moments. All these emotions are forever present when discussing the complexities of our human existence. Then add child loss to this complexity, and truly at times I feel like I am a bundle of raw emotion. The feeling of being different is particularly highlighted over the holidays. Any one who has experienced child loss knows, Christmas in so many ways is about family and connecting with our children. How I would love one more chance to be able to have a holiday with Mattie. Since that is NOT possible, what do I do???? I write, and I write, and I continue writing. 

Writing is my outlet and my therapy. Sure I could keep a journal or talk to a therapist (not to dig on my own profession, but some things transcend the power of therapy)! But that isn't quite the same as writing a blog. The blog has connected me with amazing people over the years! It is through your lens, your feedback, and you getting to know Mattie, that together YOU HAVE KEPT ME GOING OVER ALL THESE YEARS. Together we carry on MATTIE'S LEGACY. Do you have any idea how grateful I am to you???? 

The beauty of this blog is that it has endured over time. Lately as I have faced my own personal crises, the blog veered off from its original content. Some of you may even see that I have made "dark" my blog postings from September to now. This was a personal decision. It is content that I have kept for myself and perhaps there will be time points in my life that I may reflect back on it in private, as I always use my writings as benchmarks on my own growth. 

Yes this blog is about Mattie, this blog is about surviving childhood cancer and child loss, and it is also about a bereaved mother's navigation through the complexities of life. One of life's complexities is caregiving for aging parents and if I am true to myself, then that means I do not compartmentalize my life. Caregiving influences my lens on the world. So many adult children are faced with caregiving obligations and as you know I talk about the good, the bad and the ugly. Not to belittle anyone, but to call attention to the challenges we all face in life. One thing I learned through writing this blog is that we are more alike than we are different and caregiving is one of those life lessons that unites us and in the process we can learn a great deal about patience, humility, strength and love. 

THANK YOU FOR TUNING IN! I AM BACK. 

Sunday, September 8, 2024

Sunday, September 8, 2024 -- the 15th anniversary of Mattie's death. 

Tonight's picture was taken in August of 2009. By this time we knew that Mattie's cancer was terminal. In fact he was only alive a few weeks after this photo was taken. Mattie always wanted a ride-on vehicle. When he was well, there was no way we felt such a gadget was needed. However, when your child is dying and this is what he wants, you jump at the chance to get it. Mattie named this ride-on vehicle, Speedy Red. When Mattie sat in the driver's seat, I was nervous, and therefore squeezed myself into this car and sat in the passenger seat. But here is the funny thing.... Mattie was a natural. He just understood the mechanics of driving and this car gave him the freedom to zoom around in our commons area. I will never forget how Speedy Red brought moments of happiness during times of great sadness and pain. 

Quote of the day: There is an endearing tenderness in the love of a mother to a son that transcends all other affections of the heart. ~ Washington Irving

If I had to describe how I felt all day today, I would say I ranged from miserable to having great anxiety. My life is in shambles and the 15th anniversary of Mattie's death has compounded the sadness. Nothing is worse than trying to acknowledge this day without my spouse's presence. For the last 14 years, Peter and I shared this loss and this devastation together. I just can't believe some days that this is my life. Literally I wake up and go to bed in deep confusion. 

In the midst of this great sadness, my dad kept wishing Mattie a happy birthday today, and my mom is equally a bundle. Her walking and stability are worse than ever and she has no insight into her condition and issues. Yet when I am out with them, I am balancing my dad and his walker, my mom is holding my arm, and I am carrying tote bags and blankets for my mom. I feel like a sherpa. Most days, I tolerate it, but some days I would like the freedom to just be. To figure out how I am feeling, without running from one task or crisis to the other. When I say my existence is miserable, it is a very accurate statement. I live with no one who looks out for me, or who can step up and do a chore, a task, or handle an issue. It is daunting, disillusioning, frustrating, and depressing. Some days I really have to wonder what on earth is God thinking?!

The feeling of anxiety was so intense today, that I literally couldn't sit still. I took my parents out to brunch, but I wanted to jump out of my skin. My mom is glued to her phone (NO IDEA what is so important on that phone), and my dad eats too fast, needed several bathroom trips, and when not eating or in the bathroom, had his head down at the table. Truly the whole sight is depressing and neither of them can understand that I NEED SUPPORT and kindness. 

To manage all these feelings, when I got back home and got my dad situated, I went outside with the hedge trimmer. That thing has been my gadget of choice. I have gone at so many scrubs over the past several weeks, I can't tell you. Some people need to punch things to vent, I just need to pull weeds and hedge trim. It doesn't take away any of the pain, but it does get out frustration and anxiety. 

I got a message from my friend and colleague today. She reminded me of this Remember Mattie video that I created back in 2009, for Mattie's memory of life celebration. Thank you Mary Ann for reminding me of this video. The song gets me every time. You won't find this song anywhere! It was recorded by a friend of Mattie's preschool, and as soon as I was sent it after Mattie died, I knew it would make the perfect music for a video. Check out this four minute video of my Mattie's life. He was taken way too soon, and it is devastating to think that he has been gone twice as long as he has been alive. Today, tomorrow, forever.... I remember Mattie.