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. 

Tuesday, September 10, 2024

Tuesday, September 10, 2024 -- Mattie died 779 weeks ago today. 

Tonight's picture was taken in August of 2009. When this photo was taken, Mattie was only weeks away from dying. Mattie always wanted a ride-on vehicle and my parents made this happen for him! Amazing what kinds of things you will do when your child is dying! Whatever guided my decisions when Mattie was healthy, went out the window. Once Speedy Red was assembled, I was concerned Mattie wouldn't know how to drive this car! So you can see, I squeezed myself into this tiny car, and was Mattie's passenger, providing input and direction. But the beauty of Mattie was that he figured out how to drive right away. He took to it like a duck to water. Our commons area was the best place to drive Speedy Red, as it was completely fenced in and away from the street. Mattie absolutely LOVED driving and I will never forget these memories. My best moments in life were with him!

Quote of the day: What is stronger than the human heart which shatters over and over and still lives. ~ Rupi Kaur

Tonight I am in a state! So much so, that after I served and cleaned up dinner, I went outside and walked a mile in circles IN THE DARK. I had to walk because I thought I was going to have a heart attack. My heart was pounding and my chest hurt. I am stressed out on every level. Dealing with bills, the house, my dad and his many health issues, my mom, the cat vomiting all over the place, cleaning up after my dad and intense heartache...... IT IS TOO MUCH!

If that wasn't enough, I have been enduring a year long house renovation next door to me. For the most part, I have tried to take a deep breath and be understanding. But then this GIGANTIC garage and second floor living addition was being erected. I went from having a very private backyard, where I was surrounded by trees to this!

If it gets any closer, it will be in my backyard. I am so frustrated as there is NOTHING I can do about this. I am just supposed to smile and be happy, THANK YOU TO THE HOA AND THE COUNTY!

My all season room used to be a beautiful space, surrounded by greenery. NOT anymore! Right now this behemoth is green, but just wait until it is painted white like the house. Every aspect of my life is sheer chaos, in which I have NO CONTROL over anything. 

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. 

Saturday, September 7, 2024

Saturday, September 7, 2024

Tonight's picture was taken on September 1, 2009. Seven days before Mattie died. By that point in time, Mattie felt absolutely miserable. He was dealing with extreme pain. That black machine sitting on the bed with Mattie was a pain pump. Mattie had that as well as pain patches. Mattie made the decision that he did not want to be at home, he wanted to return to the hospital. On some level he knew he was dying, he knew he needed a lot of support (which we couldn't provide him at home), and he wanted to be surrounded by his medical family. The hospital became like our second home that year. Before being admitted to the inpatient unit, Mattie spent some time in the outpatient clinic. Mattie's art therapists found all sorts of toys and things to keep Mattie busy. The remote control dino was a hit. But I will never forget this horrible moment in time..... the fear, the sadness, and the unknown of what was to come. 

Quote of the day: Ever has it been that love knows not its own depth until the hour of separation. ~ Kahlil Gibran

This group photo was taken on September 8, 2018. The 9th year anniversary of Mattie's death. Back in 2010, Mattie's school planted a memorial tree on the lower school campus. The school asked me what kind of tree we wanted and I immediately said... an oak! As Mattie loved collecting and gifting acorns! I will never forget that day in 2010, when the tree was dedicated in Mattie's memory. We were surrounded by a number of friends and school staff. It was a very meaningful and emotionally draining day. I remember when the event was over, everyone returned to their busy day, and yet our day was bleak. We did not have a child to go home to, normal activities to participate in, and it was a painful and striking reminder of our differences. 

However, within two years of the oak tree being planted, it died. So a second tree, a yellowwood tree was planted. That tree struggled and looked like it was going to die. So the school planted a third tree (another yellowwood) in a different location. Guess what? That tree was hit by lightning, and split the trunk. I was unhappy with that visual, so the school planted a fourth tree..... the tree you see in this group photo. In fact, the school's arborist, Tim, was kneeling in the front row of this photo with us. Tim said..... Mattie wanted an oak, so we better give him an oak. Tim felt that Mattie wasn't happy with the Yellowwood trees and was sending us a message. So Tim picked out this beautiful White Swamp Oak. The fourth tree is a charm!

Tim text messaged me on September 7, 2018, and suggested we have a tree planting party, to provide good vibes and energy to this fourth tree. Literally I contacted friends the day before the planting and look how many people showed up! All committed to Mattie and his memory. The day we planted the tree, Tim told us that as the tree was being transported to the school, he noticed that a bird's nest was in the tree. The nest remained intact, with birds in it. Tim said it is very unusual for such a nest to remain intact during transportation, and therefore he deemed that as a positive sign. 

Peter and me on September 8, 2018. You can see the tree was tiny, but over our head in height. 

This is the tree today! I went to visit it with my parents. It is hard to tell, but the tree has to be 20 feet or taller. It is thriving. Mattie got his oak! 

I took this photo, because I am trying to show you Mattie's grove. That is what I call his line up of trees... his current tree, tree #3, and tree #2. All three trees are now looking beautiful. So Mattie doesn't have only one memorial tree, he has three. 

There are all sorts of ornaments on the White Swamp Oak. 

But today, I placed 15 butterfly ornaments on the tree. One for each year Mattie has been gone from our lives. I also placed bows on each tree. 

A close up of some of the butterfly ornaments. 

Having to visit Mattie's memorial tree is heart breaking. It doesn't get easier with each year, but what made it particularly impossible was knowing that I not only lost my son, I have lost my husband too. Everything that matters to me is gone. Tomorrow will mark the first anniversary of Mattie's death that I face alone, without Peter. I know Mattie is watching over me and like me, he is perplexed with what has happened to our family. I wish Mattie was alive, as I know he would be an incredible support to me. He was taken too soon, and is missed and loved dearly. 

Friday, September 6, 2024

Friday, September 6, 2024

Tonight's picture was taken in September of 2008. Mattie was in his first month of treatment and our neighbor gifted Mattie, Dandy Dog. Dandy Dog was a hand designed bear, that my neighbor had made for Mattie. Mattie thought this was the neatest gift, because the bear was his size. Mattie was trying to show the camera what he looked like side by side to Dandy Dog. This weekend, I face the 15th anniversary of Mattie's death and it is hard to wrap my head around the fact that Mattie was been gone much longer than he was alive. Yet in his seven years on this earth, he taught me so much and his presence will never be forgotten. 

Quote of the day: A broken heart is just the growing pains necessary so that you can love more completely when the real thing comes along. ~ J.S.B. Morse

I saw tonight's quote and my immediate and sincere reaction is I DON'T agree at all! Our hearts can feel broken over many things. I know because my heart certainly has had lots of experience being hurt. However, the death of Mattie and the end of my marriage provide me with NO growing pains! Rather just devastation! These pains were NOT necessary in my life and I assure you, the real thing will never come along. Especially since I believed I had the REAL THING to begin with. I won't allow "the real thing" to occur in the future. I know my heart. I lost Mattie, and he wasn't replaceable. I feel the same way about my marriage. I may become divorced, but in my mind and heart the 36 years I had with my husband (the person I considered my other half) is a pain and loss that is so intense it's indescribable. It has left me with so many questions about trust, love, and commitment, that I will not subject myself to another long term relationship ever again. I do not know why trite statements and platitudes are dished out when someone is in pain. It certainly doesn't help the recipient, and I would say it actually compounds the pain. 

Given that Sunday marks the 15th anniversary of Mattie's death, I wanted to post another classic Mattie video. We took him to Butterfly World in Florida. Watch Mattie interacting with a bird and then how he reacts to a bird flying on top of his head. To me this is priceless! 

This will be the first anniversary of Mattie's death that I will be visiting his memorial tree without Peter. This used to be our tradition. It is hard to know how to cope with such a profoundly horrific anniversary, but Mattie's tree grounded us. The tree was something Peter and I shared and were passionate about together. 

This weekend, I will be putting ribbons on Mattie's three trees and placing 15 butterfly ornaments on his White Swamp Oak tree. 

Thursday, September 5, 2024

Thursday, September 5, 2024

Tonight's picture was taken in September of 2008. That day Mattie received this special gift from my former student and friend, Susan. The gift started as a lump of clay that had plastic dinosaur bones embedded in it. Once he dug through the clay and collected all the bones, he could fit them together to form a dino model! Mattie spent hours sitting onto of a sheet that lined the hospital floor, had goggles on and was picking at the clay to reveal all the bones. It was like a mini-excavation. It was the perfect activity for Mattie. After working on this big dig and assembly, Mattie paused and put his head down. This was when I snapped this photo. It wasn't posed, but rather the reflection of being tired and proud of his accomplishment.  

Quote of the day: When love is lost, do not bow your head in sadness; instead, keep your head up high and gaze into heaven, for that is where your broken heart has been sent to heal. ~ Anonymous

This morning, I swear I heard a sound in my ear while I was sleeping. It sounded like a fly buzzing about. When I looked around I saw nothing. So I went back to sleep. But about thirty minutes later it happened again, just when my alarm was set to go off. Either I was imagining there was a fly in my room, or there really was a fly! Nonetheless the sound was very real. When I woke up annoyed, I looked at my phone and received many alerts regarding my dad's accounts. Truly my life is one fire drill after the other. In the past, if I received such alerts, I would have immediately asked Peter for help. Peter was not just my best friend and husband, but he was my go to person. My tech support, my gadget guy, the person who could fix anything, solve all sorts of problems, and overall be there to emotionally support me through the little things and life's crises. It is a huge loss to my life, as if a piece of me has been surgically removed. 

After feeding Indie, I literally ran to the computer to see what was recommended to fix this problem. If you haven't heard about this big data breach, here is an article about it. Given the monitoring companies we use, they can tell you where the possible breach is coming from and how to resolve it. Literally at 6:30am, I was learning about freezing credit and so forth. In other words another fire to put out! Once that was addressed, it wasn't like I could take a deep breath and relax. NOT possible in my house, because I had to get it together, so that I accomplish my morning routine and get my dad to his podiatry appointment by 11am. Sounded like this meant I had a lot of time, but it really isn't. I map out my morning to the minute. Having this scare and derailment this morning sent me scrambling. 

It was a day of one chore, one bill, one issue after the other. It is 7pm, and I feel like I have gone five rounds. But at the end of the day, I would manage, handle, and cope with just about anything, if I understood what on earth happened to my marriage and the person I have held dear for 36 years. I get very connected to the people I care about and there are moments in my day when I evaluate my life, and truly say, what's the point?! Everything that I believed, valued, and held to be true is no longer my reality and this has left me disillusioned and forever changed.

Wednesday, September 4, 2024

Wednesday, September 4, 2024

Tonight's picture was taken in September of 2008. Mattie was home between treatments. That day his "girlfriend," Charlotte came to visit. Mattie met Charlotte in kindergarten, the year before this photo was taken. They were inseparable. Charlotte's joke was that she, Mattie, and their friend Campbell were all going to go to college together and be roommates. Just adorable. Charlotte visited Mattie often, both at home and in the hospital. As an adult, it is hard to visit a child in the hospital. But as a child, it is even harder. Yet Charlotte was there with us throughout the 14 month journey. I learned so much from Mattie and his friends, and even at their tender age of 6, they already knew what was important in life.... love, support, and friendship. 

Quote of the day: She took a step and didn't want to take any more, but she did. ~ Markus Zusak

This morning I received this poem from my friend in England. She wanted to let me know she is thinking of me and that like a tree blown in the wind, I get stronger as I learn to navigate and survive each blow. As I told her this morning.... may God watch over both of us.

It was a busy day. While getting my dad up, showered, and dressed, the car dealership came to pick up my car for servicing. I am convinced something is wrong with my car, so we shall see, but I am afraid to drive it. My service rep called me today to check on me and to let me know that they will be doing a once over of this car to get down to the bottom of the problem. 

Meanwhile, when I got up super early this morning, I noticed that several of the outdoor lights that I fixed are once again NOT working. This would normally be something I would turn to Peter for, as he has many carpentry, plumbing, and electrical skills. In fact, he installed most of our outdoor lighting. In any case, I have no intention of playing with wires, so this morning, I text messaged our electrician. Bob is someone that worked in our house for MONTHS, after we bought it. The house literally needed to be completely rewired because it wasn't to code! So yes, I have the cell phone numbers for both my plumber and electrician, even though they work for a big company. In any case, Bob is coming next week, and we will get down to the bottom of this wiring issue! 

After dropping my dad off at his memory care session, I came back home, and met my mom's physical therapist. She had a session, and then I got her in the car, and took her to the Foundation's mailbox, and then onto the hospital for her mammogram. My mom was very nervous about the mammogram, mainly because her neck has lost its flexibility, making it hard to position her on the machine. But she had a great tech and therefore had a positive experience. 

For the next several weeks I am balancing doctor appointments for both of my parents and for myself. The ironic and funny thing is I finally paid the Prolia bill from March, and don't you know it..... next week is my next shot! Six months flew by while fighting to get access to my co-pay! 

Tuesday, September 3, 2024

Tuesday, September 3, 2024 -- Mattie died 778 weeks ago today.

Tonight's picture was taken in September of 2008. This was Mattie's second month into treatment. By that time all of his hair on his head fell out. For the most part, this did not seem to bother Mattie. Or it didn't while he was in the hospital. When he was out in public, what he did not like was people staring at his bald head. He could feel people's reactions and this evoked various feelings for Mattie. I think the hospital truly became a safe space for Mattie, because he was surrounded by an incredible care team of nurses, art therapists, physical therapist, and child life specialist. All of these women made the impossible much more bearable! As you can see, Mattie was a busy fellow even on chemo, and I am thankful for his love of creativity, because it helped to navigate many rough moments. 

Quote of the day: Happiness is the china shop; love is the bull. ~ H. L. Mencken

I can't understand what happened to the summer. One minute it was the beginning of May, and the next minute it is September. I have never liked changing over from summer to fall. I did not like it as a kid, most likely because it meant that school was starting, and I definitely do not like it as an adult. Summer signifies more freedom to me. Freedom to be outside, freedom to see nature and greenery, and freedom from being inside of my house. 

When Mattie died, the whole notion of Fall changed for me. I went from a mom, who was tied to Mattie's school community, to just a woman, who was a bereaved mom and no longer part of the school community. There weren't fall events, no playdates, and therefore September not only signifies the month Mattie died, but also the month that I stopped actively being a mom. I am reminded of this heartbreaking change every September. As I am surrounded by people who are parents, who are getting their children to school in the mornings, and talking about school milestones......... I will never personally experience any of this.

Childhood cancer changes the lives of families permanently. I have seen it within myself, my marriage, and my future. I do think because I have personally experienced cancer and the death of my son, people feel very comfortable talking with me about their own diagnosis. Case in point, my car needs to go back in for service because I am uncomfortable driving it. To me it is still feels wobbly and though brake weights were put on the tires, I did not feel it made a difference. In fact, I feel the issue has gotten worse. My service provider called me today to arrange for my car to be picked up on Thursday. She and I got to talking and I learned that she has brain cancer. I knew she was going on leave until the beginning of the year, but today, I found out the reason why. She isn't telling all her customers, but she and I have a special connection. 

I am devastated for her, especially since she has had a tough life up until this point. Ironically when talking to her, I pictured someone who is young and in her thirties. Turns out she is my age, which further connects us together. I told her I plan on calling the dealership periodically to check in for updates on her progress. She was telling me how she chose her oncologist, and talked about the importance of a rapport and connection. This is 100% correct! There are many oncologists out there, many are competent, but a cancer diagnosis leaves you vulnerable and therefore the right personality fit must be present for the team work to be effective. So I shared my perspective and insights and again this reminded me..... Mattie was indeed my life's greatest teacher. I use the lessons I learned from Mattie everyday to relate, connect, and support others. 

Monday, September 2, 2024

Monday, September 2, 2024

Tonight's picture was taken in August of 2008. Mattie was in his first month of treatment and his art therapists and child life specialist were on the case and working hard at figuring out Mattie's personality, his likes and dislikes, and providing activities to keep him engaged, active, and with the necessary diversions to cope with living 24/7 in a hospital. Thankfully Mattie loved working with his hands, because during his 14 month hospitalization, Mattie painted, built with cardboard boxes, did hundreds of Lego kits, and worked with clay. Mattie was very prolific and I am thankful for all of the items he created, as they serve as important parts of his legacy. 

Quote of the day: Stab the body and it heals, but injure the heart and the wound lasts a lifetime. ~ Mineko Iwasaki

As today was a holiday, I had my dad home from his memory care center. His physical therapist came to work with him at 1pm. Any activity for my dad is a GOOD activity, as I am desperate to keep him moving and as strong as possible. Because I had a good chunk of the morning at home, I was able to work on Foundation items that I had been trying to get to for some time now. During the week, when my dad is at his memory care center, I do NOT get a break, because by a certain hour my mom wants to go out. Which makes it close to impossible for me to be able to work, focus, and concentrate during the day light hours. Which is why if I have serious work to do, I have to wait until after 10pm, when my parents are in bed, to have undivided time to myself. 

My friend in England, who I met in an on-line support group in the fall, communicates with me daily. She gave me this passage today, because she felt it would inspire me, and remind me that the work that I do each day, is not for naught. That the work it done so that I can whether the storm. It is a poignant story, because I do feel like I am constantly struggling to stay afloat, and to manage the various crises I am hit with each week. My joke, after reading this passage was..... I need a "labourer." Or maybe a few!

If you can't read the passage in the photo, here is what it says:

Before hiring a new worker, the farmer asked what he could do. "I can sleep through a storm," the laborer said. It didn't make any sense to the farmer but he needed a worker and, for the next few months, the man was perfectly capable. Then a storm struck in the middle of the night. The farmer jumped out of bed and ran into the rain. He banged on the door of the laborer's cottage but got no answer, so he ran off to try to minimize the damage the storm would cause. But he found the animals were in the barn, the machinery and tools were stowed away, all the doors were locked, and the thatched roof the laborer had repaired was riding out the storm nicely. Then he understood. The laborer could sleep through a storm, whenever it arrived, because he knew he had done his work properly. Storms come in all walks of life. Do your best during the day and you will always sleep well at night. 

Sunday, September 1, 2024

Sunday, September 1, 2024

Tonight's picture was taken in August of 2008. It was Mattie's first month in treatment. It did not take Mattie's art therapists long to understand that Mattie LOVED to create. They also knew he loved Scooby Doo. So they designed a stenciled scene of all the Scooby Doo characters on a ceiling tile. Mattie and I worked on painting in this ceiling tile for weeks. When we finally finished it went up on the clinic's ceiling. Mattie designed many ceiling tiles while in treatment, and each time we entered the clinic, Mattie was proud to see his work on display. 

Quote of the day: Stop calling your heart broken; your heart works just fine. If you are feeling love, anger, gratitude, or grief, it is because your heart is doing its work. Let it. ~ Maggie Smith

This afternoon, I took my parents out to Sunday brunch. This is a tradition we started when they moved in with us in 2021. Each Sunday, we go to the same restaurant and therefore we have gotten to know our server very well. Today, Cheryl was sick, so we worked with someone else. 

I ordered a drink today called, a Blind Date. It is my one drink a week, and I happen to like this one because it is made with fresh grapefruit juice. In any case, when I ordered it, the server said to me.... who is the lucky guy? You know because I ordered a drink called a Blind Date. I literally heard him, but did not merit the comment with a response. First of all, he was a lot younger than me and second, I am in no mood for cutesy or come ons! I have enough on my plate, and seeking any sort of relationship now or into the future with a man is NOT going to happen. 

As our meal continued, I analyzed this server and realized he needs the come on lines, because his ability to do his job is lacking. While in the restaurant, I text messaged Cheryl and told her that I disliked this server for his laziness and lack of attention to detail. Mind you when I entered the restaurant, I told the manager and the hostesses that I need a server who is attentive and can manage our multiple requests (they know us well, so when I say this, they know exactly what I mean). How they matched us up with this fellow is beyond me. 

Any case, Cheryl confirmed my experiences with this man. We managed through the meal, but that was only because of my assertiveness and addressing all of my parents needs myself. Truly if you tick me off enough at a restaurant, I literally will get up and help myself to things and clear the table.  

Dining with my dad is getting very challenging as he eats so fast, or doesn't eat at all and then lands up staring at us, waiting for us to finish. My dad is stuck inside his own head. He can't hold a conversation, has no desire to, hardly listens to us when we are talking and has no short term memory. I mean NONE! Of course no meal would be complete without trips to the bathroom, and today involved a complete changing. 

I balance a great deal on any given day. I have given up aspects of my own life to either be a full time mom, to run the Foundation full time, to be a caregiver to my parents and the list goes on. I say this because when I am in a relationship, the needs of the other person are always extremely important to me. In some cases you could say others' needs override mine. For the most part these are my choices, but given all I have emotionally sacrificed in my life, I never thought I would be facing a divorce and life without my husband. 

Saturday, August 31, 2024

Saturday, August 31, 2024

Tonight's picture was taken in August of 2005. Mattie was three years old and very excited that day, as we took him to Legoland in San Diego. It had to be Mattie's favorite theme park! Mattie was a big train fan, especially Thomas the Tank engine. The beauty of Legoland was they have huge Lego structures of all kinds. Truly it is a park that has something for everyone! 

Quote of the day: One of the hardest things to do in life is letting go of what you thought was real. ~ Kathleen Aquino

I took this video of Mattie in the Fall of 2007. I enrolled Mattie in an after school club, called Construction Club. I knew this would be right up his alley, as it involved building things out of every day objects and the club was run by his kindergarten teacher. On the first day of the Club, Mattie returned home with a spaceship that he designed! This five minute video highlights Mattie's explanation of this ship! This was what our days looked like, and whatever Mattie brought home, I tried to take an interest in it and to get him to dialogue about it! I was fascinated by the way Mattie's mind worked and given what you see here, you might understand why I nicked name him "my little engineer."

I have no idea what awoke me at 1am this morning, but like the night before, I was wide awake. I seemed to have developed a post nasal drip, and felt like I was drowning in fluid. So I propped myself up, took several deep breaths and was able to fall asleep eventually without needing the TV. I am sure part of these sleepless nights is attributed to stress. 

I am very stressed out about September bills. I could have put my head in the sand and not think about it, but I knew this wouldn't help my anxiety level. I also know if I don't attack issues head on, no one else in my house is going to do it. I have to be the responsible adult on all fronts. Once I got my parents settled after breakfast, I headed to the computer and decided to create a September budget flow spreadsheet. Typically I do such a sheet each month, but on paper. Today, I decided there was too much to account for, that I needed an Excel spreadsheet. In fact, the process was so helpful, that I most likely will do this monthly, so that I have a way to track things very concisely month to month, and honestly with each month that I can juggle all of this on my own, it illustrates to me that YES I can do this. These spreadsheets will also help me capture historical data so that next September, I can see how I managed all the expenses. As my lifetime friend Karen said to me tonight.... I maybe more of a numbers person than I give myself credit for! NOT SURE about that, I just know that invention is the mother of necessity!

This afternoon, I went outside onto the porch with my cat, Indie. I sat outside for at least thirty minutes. While there I had several hummingbird sightings. Hummingbirds tend to become very active in September, before they make their flight to warmer climates. This morning, I changed their sugar water, to anticipate their frenzy. Cleaning out the feeders is a production, but one that is worth it, as I love seeing these remarkable birds. 

Aren't these white flowers on my chive beautiful?!

I love this portion of our garden. The crape myrtle was here when we bought the house, but Peter planted all the roses, because he knew how much I love them. I have been nurturing them all summer. 

My cardinal sighting! 

My Sunny Hibiscus. I bought this plant in the spring, and I must admit that I bought these hibiscus because of its name. To me it is a tribute to my beautiful Sunny! 

In any case, when I bought these plants, they were TINY! Now look at them!

This evening, I made sausage and peppers for dinner. Yes I form the sausage into meatballs. It was delicious and I am trying all sorts of things to inspire my dad to eat. 

Friday, August 30, 2024

Friday, August 30, 2024

Tonight's picture was taken in August of 2004. Mattie was two years old and was visiting my parents in Los Angeles that week. Mattie had a natural instinct to be cautious, which made parenting to some extent easier. It took a while for Mattie to approach water and get in a pool. But eventually Mattie got there, and swimming lessons over many summers helped. When I look at this photo, I had all sorts of hope for our future and of course for Mattie's.

Quote of the day: You will never know true happiness until you have truly loved, and you will never understand what pain really is until you have lost it. ~ Unknown

I came across this video of Mattie that I wanted to post tonight. It is one of the many videos I found while cleaning out my Google account. The context of the video was Mattie came home from kindergarten. While in class he had traced, cut out, and colored a big red heart. When I asked Mattie how he knew he wanted to create a heart, his answer was.... because you are great! That was my Mattie. To me this very short video is priceless! Check out the beauty of my Mattie! 

Last night, I fell asleep and then at 1am, I was jolted awake. Why? We had a power outage. My fan went off, my sound machine went off, and it was like someone flipped a switch in my head. I bounced out of bed to figure out what was going on. I could hear the generator start, but pretty soon thereafter, the actual power returned. Of course clocks and things were blinking and instead of going back to bed, I fixed all the electronics. Sleeping is not my friend. If I wake up, it is very hard for me to reset and get back to sleep. So at 2am, I turned on the TV and finally fell asleep. 

When I woke up this morning, I could see that all the outdoor lights were still on. Despite it being light out. That may not sound like a big deal, but to me it is, because it meant that I needed to figure out how to solve this problem. I am SICK of having to play firefighter each and every day. It gets very tiring, as I live with no one who is capable of addressing or solving anything. 

On an aside, prior to Mattie being diagnosed with cancer, I could sleep without any white noise in the background. In fact, I had NO problem sleeping at all. Once Mattie was diagnosed and we had to live in the hospital, I learned to live on very little sleep (like 2-4 hours on any given night) and I became a very light sleeper. Mostly because when living in a hospital, nurses and residents are coming in and out of your room at all hours! Some aren't kind, they would flip on the bright overhead lights in the middle of the night. I can't tell you how many of these gems I had to deal with, and I assure you at 3am, it wasn't my best hour to be playing games with me or Mattie. If you think I am assertive by day, try me at 3am!

Living in a hospital was such a nightmare, especially in a pediatric intensive care unit. Because there are NO quiet hours, the place is a buzz 24/7/. The walls were paper thin, and I could hear conversations, issues, crying, and even children dying next door to us. When I tell you it was a horrific sound, I am not kidding! It was like living in a war zone. We endured this not just for one night, but try 14 months straight. Any case, within the first month of treatment, one of my former students gave me a wonderful sound machine as a gift to address this NOISE. I never used one before, so she told me all about it and how useful it could be to drown out sound. Mary was 100% correct. With every hospital admission, Mary's sound machine came with us. We had that machine going every night! 

Once Mattie died, that sound became a necessity to us. I think there was so much turmoil in our heads that we needed the sound of rain to block out the chaos. To this day, I still use the device that Mary gave us in 2008. Remarkable no? Any one who thinks that childhood cancer can't change a parent, FORGET IT! That would be a lie. My sleep has been permanently changed, as has my ability to focus and concentrate when there is noise and other distractions around. Of course let's not talk about the psychological toll of Mattie's death!

Back to the outdoor lights! For the most part, I was able to reset all the timers and have gotten many of our lights to work again. But that feeling of panic and anxiety are ever present, because I constantly am afraid that things will happen in the house that I will not be able to manage and to fix. This panic is a direct by-product of being separated and on my own.

Thursday, August 29, 2024

Thursday, August 29, 2024

Tonight's picture was taken in August of 2003. Mattie was a year old and visiting my parents in Los Angeles. We were in a portion of the LA Zoo that had hands on activities for children. Mattie had his hand right in the pool trying to touch a sting ray. Mattie was fascinated and inspired by nature, and I was fascinated and inspired by him!

Quote of the day: When your heart is broken, your boats are burned: nothing matters anymore. It is the end of happiness and the beginning of peace. ~ George Bernard Shaw

I am very grateful for family and friends who reached out to me today. Yesterday was a low day, as you could tell from my blog posting. Not that today was sunshine and unicorns, but it was more manageable. It is amazing what a kind text, email, and message can do to help me through. I am very grateful for the amazing people in my life. 

This morning, I had an appointment with my gastroenterologist. He is a New Yorker and very good at what he does. The last time I had a colonoscopy was on October 31, 2019. Funny date for it, no? Peter and I did our colonoscopies months apart that year, so we could support the other. Unlike me, Peter managed the prep and the whole process like a champ. I know he decided to go first, in order to help normalize the nightmare for me. The procedure itself is fine because you are knocked out, but the prep is sickening. Given my migraines, I can get nauseous at a drop of a hat. 

Any case, while scheduling my colonoscopy for October, I had to think about who can drive me and sit with my mom while I am undergoing this procedure. I have lost my plus one, my medical emergency contact, and it was just another reminder of the devastation I am facing. In addition, this was the first health form I completed in which I checked "separated." That may not sound like a big deal, but to me it is the end of the world. As if I was checking off that I lost a limb. 

I am a person who prides myself on my interactions with others and having to admit that the most valuable relationship in my life has crumbled apart is a bitter pill to swallow. If I only had a magic wand to fix our relationship, but in lieu of a wand, I tried everything humanly possible to stabilize our marriage. I remind myself of this, and though that doesn't bring me comfort, I never want to live with regrets, because I will always love Peter. 

Wednesday, August 28, 2024

Wednesday, August 28, 2024

Tonight's picture was taken in August of 2003. Mattie was one and I captured him in a photo as he was crawling over to the basket where I kept all of his books. Mattie loved to look at books, to pull them all out of the basket and flip through the pages. I read to Mattie daily and he had several favorites. In fact, I got to experience the beauty of children's books by exploring them with Mattie. 

Quote of the day: I fell in love with him two seconds after I saw him. And I’ll never stop loving him, even though it doesn’t make sense anymore. ~ Nicole, “Marriage Story”

Each day I wake up and wonder, what will happen to me today? I could say that I am hopeful that tomorrow will be a better day, but it never is! The profound sadness and confusion are overwhelming. I live under inordinate amounts of stress and I am not sure how much more I can handle. 

In the past, during such turmoil, I turned to Peter. We certainly have endured our share of turmoil with Mattie's diagnosis, cancer journey and death. We had such a special connection, that when Peter would talk with me during challenging times, I knew everything was going to be okay. I would say that no one else in my life has had this same ability to calm me down and reorient my outlook. But I guess that was the beauty of our connection and our 35 years together. I trusted Peter and I do not easily give my trust and love away. 

Though I may have gone out on dates in high school, I would say that Peter was my first boyfriend. We grew up together, went to college together, sang in our college choir together, we supported each other through various graduate school programs, jobs, my dissertation, studying for my licensure exam, having a baby, raising Mattie, Mattie's sensory issues, Mattie's schooling, Mattie's cancer diagnosis, Mattie's death, creating and running Mattie's foundation, and the list goes on. With each and every life event, we grew closer, we found ways through life's highs and deepest lows. We had no family in the Washington, DC area, so we relied heavily on one another. 

Trying to live life without the person who has been an integral part of my life now for 35 years is disorienting and disheartening. But here I am, though I am not sure I am going to get through this particular chapter in my life. No glimmers today. That notion was short lived and GONE!  

Tuesday, August 27, 2024

Tuesday, August 27, 2024 -- Mattie died 777 weeks ago today.

Tonight's picture was taken in August of 2005. Mattie was three years old and visiting my parents in Los Angeles. Here was the funny story about all of this! My mom gave Mattie a gift of trains and vehicles. Of course he loved playing with them, but look what brought him joy! YES THE BOX! Mattie put it on his head like a hat and was parading around the house. It was the simple, everyday items that ultimately always caught Mattie's attention. 

Quote of the day: Be confused, it’s where you begin to learn new things. Be broken, it’s where you begin to heal. Be frustrated, it’s where you start to make more authentic decisions. Be sad, because if we are brave enough we can hear our heart’s wisdom through it. Be whatever you are right now. No more hiding. You are worthy. Always. ~ S.C. Lourie

Today was another blur. I had my dad home today and it takes a lot to keep him awake. All he wants to do is sleep the day away. That isn't good for him physically or cognitively. My biggest battle with him now is his massive use of paper products. My dad goes through two rolls (YES, I am not exaggerating) of toilet paper a day, a roll of paper towels in a week, and two boxes of tissues a week. Let's not talk about paper napkins. Even supervising him in the bathroom, it is like going into battle. I can't get him to stop using up and wasting paper. My biggest concern is he is going to create a problem in our septic system. 

This morning, I slept to 8am. I am absolutely exhausted and days now that I don't have to get either of my parents to appointments, I sleep later. I need it. As soon as I got up, I went to feed Indie. I could hear my mom directing my dad in the bathroom and telling him to go back to sleep. When I got back upstairs, I saw my dad lying down in a funny way on top of the heating blanket. I went into his room and got him up to reposition him. No matter how many times I have told my mom that my dad needs supervision getting back into bed, she doesn't get it. I got him up, in bed, propped up pillows under his knees and arms, covered him and turned the heat back onto the blanket. Once I completed my morning routine and went back upstairs to wake my dad up, it was another show. Many runs to the bathroom, and yesterday, he literally went to the bathroom all over the bedroom floor. I spent a good portion of the day, cleaning and cleaning to remove the smell. Smells may not bother some people, but for me, I am like a blood hound. I smell everything and smells bother me intensely. 

I managed more bills today and spoke to the company that provides our home and car insurance. There is just so much I have to learn and each day, when I wake up, I hope for a calm day. A day I am not frantically answering questions and putting out fires. I have yet to have such a day. I live constantly on the edge awaiting the next shoe to drop. It is exhausting living with this much stress.

Any case, today's gift that I learned is that I am paying for my home insurance in my monthly mortgage. I literally thought I was going to get hit with this insurance bill this September. To my amazement, I learned I can take that off my September worry list. I take the financial gifts when I get them. Then I moved along to manage my mom's health insurance claims and other issues. I have taken WORN out to a new level, of course in the midst of all of this, I am doing laundry, preparing and serving meals, and providing guidance and entertainment. 

Tonight while trying to clear the dinner dishes, my mom derailed me with a bill. I literally had to stop everything, call the company in question and attempt to talk to a live person! Which was a feat in and of itself, I am so sick of automated phone lines. Where do I sign up for an easier life? A life where my husband was my husband? When things made sense in my day to day existence. Whenever I am out now and I look at older couples together, I say to myself.... that was supposed to be me.