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.