Saturday, May 3, 2025

Saturday, May 3, 2025

Tonight's picture was taken in May of 2008. This is a companion photo to last night's posting! Last night I showed Mattie with my parents in his kindergarten classroom. They were altogether to celebrate grandparents day at Mattie's school. After that event, we all went out to lunch together. Look closely! What do you see all over the table? LEGOS! Legos were a big part of our life, and that love carried over into our cancer journey. This lunch captured a happy moment, in which I thought we would have many more grandparents days into the future. It never happened, because two months after this photo was taken, Mattie was diagnosed with an aggressive form of bone cancer. 

Quote of the day: The most confused you will ever get is when you try to convince your heart and spirit of something your mind knows is a lie. ~ Shannon L. Alder

I have been invited over to a neighbor's house tomorrow evening. There will be a gathering of a few of us. All the people attending have observed what has happened to my life since I moved into the neighborhood. This is a real lesson! No matter how much you would like to hide things, PEOPLE notice! In fact, it was my neighbors who confronted me about what was going on because of their observations, and it was my neighbors who told me I had nothing to feel embarrassed about. I will never forget hearing them say this, because it was very supportive. Any case, I never like going to someone's house empty handed, so I baked lemon crinkle cookies. This recipe is super easy and absolutely delicious.  The big white spots you see are powder sugar!  

My dad had a physical therapy session today, but overall he is struggling. His lip is extremely swollen, as if someone hit him and his left hand is also swollen and itchy. I swear this is his reaction to the new statin drug he was prescribed. The doctors are telling NO this isn't the case, but my gut is saying YES. This is the only new addition to his repertoire in a week. All I know is since starting this drug, he is dealing with constipation and now a rash/allergic reaction. I was told to give him Zyrtec today. I will see if that works. I have put zinc oxide on his hand and bandaged it to prevent him from scratching. I also have a bag on ice on his lip. Truly I just don't know if I am coming or going some days. Keep in mind with dementia, my dad will fixate on issues and scratch and scratch or keeping rubbing his lip, making both conditions worse.

Some days, I understand my reality, I don't like it, but I am able to block it out and carry on. But today wasn't such a day. I do not know how I went from happily married (for thirty years this July) and confident in our tried and true relationship to this chaos. It makes no sense to me and makes no sense to my family and friends. On an aside, when I took my parents out today to our local diner, you want to know what happened? The manager comped our entire lunch. When I thanked her and asked why? Her response was because she appreciates us. She appreciates our loyalty and thinks I am a very special and unusual person. Back to my point.... people observe and see everything! If you could see what I juggle when I am out with my parents...... it is just me, and I am balancing my dad in a walker, my mom holding my hand and my other hand filled with a tote bag, blankets and all their jackets (even in the summer, due to air conditioning). After experiencing this kindness I thought to myself...... complete strangers know me better and treat me better than my own husband.

After I got my parents settled back home, I packed up the car and did a donation of Foundation toiletry items. While driving, it hit me..... summer is approaching! In my mind, I will never see the beach again, I will never have these adventures with my husband, and then I thought to myself.... how does a person walk away from a lifetime together and never look back? That was in one breath and in the next breath, I asked myself..... why does God hate me so? 

Friday, May 2, 2025

Friday, May 2, 2025

Tonight's picture was taken on May 4, 2008. It was grandparent's day at Mattie's school. I am SO HAPPY that I had the wherewithal to volunteer that day. Literally that morning, I served coffee and breakfast to hundreds of grandparents under a tent on the school's field. It was a magical day, as Mattie's school really knew how to organize and execute events! The children performed in a concert and then got to show their grandparent's around campus. I snapped this photo of my parents and Mattie in his classroom. If I did not volunteer that day, I would never have captured this photo!

I also recall that Mattie's school counselor came up to me that day and commended me for the incredible care, service, and kindness I showed to each grandparent I served. I will never forget that moment, as I wasn't doing anything special other than being myself. 

Quote of the day: Confidence is like wearing a superhero cape under your everyday clothes. It's the secret weapon that makes you feel unstoppable, even on days when you're just winging it. So, rock that messy hair and embrace your awkward moments like they're the latest fashion trend. After all, confidence isn't just about knowing you can handle anything; it's about laughing in the face of challenges and saying, "Watch out, world, here I come!” ~  Life is Positive

As tonight's quote points out, I put on my figurative superhero cape this morning. I had an 8am HVAC appointment (are you following along? I have had an HVAC appointment almost weekly for a month now!). To make this appointment happen, I had to get up at 5:45am. When 7:30am rolled around and I did not get a text message confirmation or update, I knew it wasn't a good sign! If it were just me at home, I would have sucked it up and dealt with the HVAC person whenever he showed up. But juggling both of my parents, I do not have the luxury for timing games. 

So at 8am, I literally called the company and left a message with their answering service. I had no confidence in that process, so instead I text messaged the HVAC person directly who works with me. Paul is a kind soul and understands what I balancing at home and truly tries to help. This is the third time I have worked with Paul and the last time, he gave me his cell phone number. Truthfully I have contacted him while he was on vacation with his wife, and he answered my messages. He's a peach I tell you! 

Any case, I told Paul through a text message that I was promised an 8am appointment. I also told him that I had to get up at 5:45am to make this appointment work. He is well aware of the fact that I care for my parents and that I am divorced. He also knows that my mom wants to get out of the house at 1pm most days, so he has some understanding for my three ring circus. He was disappointed that his company did not honor my 8am appointment and to make matters worse the company assigned him to another customer first before coming to me. By the time I finished with Paul, he called his manager, and the next thing I knew Paul was headed to me first! My point to all of this is juggling my parents, I have become even more assertive than I usually am, and in the process I have gathered many wonderful people around me to help me with the house. 

The air conditioning units needed regular maintenance today from motors cleaned, outdoor condensers cleaned, and the installation of a new capacitor. The whole thing took about four hours. I am vigilant about the maintenance of these systems, because I want them to run for as long as possible. Before Paul and his assistant left today, they had to factory reset my Nest thermostats. Why? Because the Nest account wasn't associated with my email. So believe it or not, I was locked out of the system in my own house and I couldn't adjust or set the thermostat. I was constantly freezing or broiling. How would you like living in your home and not being able to control the heat or air? Well this is what I have been dealing with and since I couldn't access the account (as it wasn't associated with my email) the only option was we had to sit down and figure out how to factory reset it. I am very grateful to Paul and Manny today.... my HVAC angels. Paul's assistant was absolutely sweet (has three cats and told me all about them!), and said I was so kind, that he wished every customer was like me. Though these fellows were here helping me, I make it my business to get to know them personally and always give them drinks and snacks. Working with me isn't just a transaction, working with me, means building a relationship. 

After we were back up and operational air conditioning wise, I took my mom out for tea. Keep in mind that we go to this Starbuck's weekly. I know every person working behind the counter and the manager. Today I was chatting with three of the staff members and one basically told me that he is typically shy and doesn't get into conversation with most customers, but I am different! He said.... I LIKE YOU! I don't mean a romantic like, I mean a like in the sense of kindness and respect. Which to me is the ultimate form of liking a person! 

Though it was a day filled with multiple tasks, when I have the opportunity to positively connect with people, it makes my day brighter. These interactions do not change the reality of my day, but they definitely influence my mood and feelings about getting through the day. 

Thursday, May 1, 2025

Thursday, May 1, 2025

Tonight's picture was taken in April of 2008. I will never forget this moment in time. Mattie's elementary school had an end of the year mini carnival. They even had a little train like cart giving kids rides around the campus. Mattie was sitting next to his two best friends from kindergarten.... Charlotte (who he called his girlfriend) and Campbell. Charlotte always said that the three of them were going to go to college together and become room mates. Very sweet indeed, and it is truly hard to grasp that this was Mattie's first and last year at that school, because three months later he was diagnosed with cancer. 

Quote of the day: Of all the words of mice and men, the saddest are, "It might have been." ~ Kurt Vonnegut

It might have been! A very powerful statement and sentiment. The expression of regret, of longing, and of the knowledge that life will not be how you imagined it could be. This morning, after getting my dad showered, dressed, and downstairs for breakfast, we did some brain games. Yes I still have multiple workbooks that I do with my dad to try to get him to think, see patterns, and work on his memory skills. This morning we did a mini sudoku and numbrix. Both number games, but it isn't about addition or subtraction, instead it is about patterns. My dad at one time was stellar with numbers, as his training is in accounting. 

When my dad's therapist arrived, I noticed she looked different. Now keep in mind I saw her last week too, but did not put two and two together. It turns out she is pregnant. Naturally I am happy for her and understand this is an exciting time in her life and for her family. However, given the mental state I am in, do you want to know how this news hit me? Can you imagine?

I have to admit, since Mattie died, I really have trouble processing people being pregnant. When I hear someone is pregnant, my mind automatically goes to...... will this child have cancer too? Of course childhood cancer is very rare, UNLESS of course, your child has cancer. Then it doesn't seem so rare. When you think of the fact that two classrooms of children in the USA are diagnosed with cancer DAILY, this illustrates that it isn't as rare as the media would like us to think!

As I looked at my dad's therapist, I was transported back to the fall of 2001, when I learned I was pregnant with Mattie. Despite living through 9/11, while being pregnant and feeling stressed out about this national catastrophe, I was very focused and always concerned about the baby I was carrying. I tried to do everything right! But despite how vigilant I was, years later Mattie got cancer and then died. WHY? Why do children get cancer? Why did Mattie get cancer? Why didn't the treatment work? Why was Mattie taken too soon? LOTS of questions, and NO answers! Very little is known about why children get cancer, because unlike in adults which maybe environmentally triggered, this isn't the case with most childhood cancers! Nor do children inherit a propensity for cancer (for the most part, as there are very few genetically linked childhood cancers).

When I get in this type of mood, I can't help but think why are some people lucky enough to have healthy children? Why didn't I? 

For Mattie Miracle, it is our annual Awareness Walk season. Whenever I think about the Walk, I think about the event Mattie's support community created for him in 2009, around his school's track. That event served as the role model for our future Foundation events. Prior to COVID-19, the Walks were live events, held at Mattie's school. I have to admit that Walk days were hard. Not only logistically and physically, but mentally. While others were attending and probably looking at it, as a fun event, my mind was locked on the day captured in this 2009 photo. So in essence the live Walks reminded me of the profound loss I had, and when the event was over, people went back to their lives, and I then had to contend with that lonely, isolated, and intense feeling of loss all over again. No matter how many years go by, this loss is alive and well. This loss clouds how I view pregnancies, children, and now I can add marriages to the traumatic mix. 

Wednesday, April 30, 2025

Wednesday, April 30, 2025

Tonight's picture was taken in April of 2008. Mattie was six years old. Mattie literally built a car lift out of tinker toys and had his battery powered car on top of it and he was looking at all the mechanics underneath! Sometimes I just loved watching how Mattie's mind worked! 

Quote of the day: Gardening is the work of a lifetime: You never finish. ~ Oscar de la Renta

This morning, after dropping my dad off at the memory care center, I headed back to Lowe's. I have visited this store about three times now. I always go on a weekday morning, when there are no crowds. I have gotten to know one of the women who works in the garden center. She saw me today and she literally asked me..... did you plant the things you just bought on Monday? When I told her that I did and that I wouldn't buy more plants until the ones I previously bought were planted, she response was.... you are working so hard. You must be exhausted! How are you doing all of this?

My response to her..... the key is to do it a little at a time. Of course, if she knew the real circus show and issues I face daily, then she would know that planting was the least of my problems. Planting and gardening is my mental health outlet. 

This afternoon at around 4pm, I started planting. I had about two hours to work outside, until I had to focus on dinner at 6pm. I started by planting flowers on the porch. 

This is one of my tribute areas on the porch to Mattie. The angel was given to me, shortly after Mattie died, by Toni. Toni is Brandon's mom, and as many of you know Brandon was Mattie's closest buddy during his cancer journey, as both fellows were diagnosed with cancer in the summer of 2008. I also have dragonfly and butterfly garden stakes in the pots, and a Mattie Miracle memory stone on the bottom shelf. 

Shortly after moving into the house, my husband bought beautiful flower pots and planted perennials. For the most part these plants have been hardy and made it through several winters. Winter of 2025, killed many of the plants and today, I redid the area. 

The wall is where I grow the herbs I use for my summer meals! 

These flower pots also host perennials, but like the other area above, many of the plants died in the winter, and today, I replanted several perennials. I added blanket flower, red dragon, and dianthus. 

I can't get enough of seeing these irises! This is the first year I got them to bloom!

This is my annual flower area. In this area I planted hibiscus, blue salvia, red verbena, and calibrachoa. 

When we first bought this house, this flower bed was a disaster. We transformed this area with roses of all kinds. I started working in this area today, pulled out weeds and shaped the hydrangeas that are behind the roses. There is a fountain in the center of this garden and a beautiful crape myrtle tree! There are ornamental grasses in the front of this flower bed. You should see what they looked like before I cut them back today!

To maintain these gardens is a daily chore for me. I take one area at a time, and when I tell you that I weed everyday of the summer months, I am not kidding. All of this is very therapeutic for me, given what I am balancing inside the house and emotionally. Yes I still have carpal tunnel syndrome, but ironically when I am working outside and in the dirt, I have no pain. My pain starts when I sit or type! 

Tuesday, April 29, 2025

Tuesday, April 29, 2025 -- Mattie died 792 weeks ago today. 

Tonight's picture was taken in April of 2004. Mattie was two years old and that day I took him to the Reston Zoo. Mattie loved that Zoo, because it was small, had wide open spaces, and many hands on activities. Mattie had a natural curiosity and respect for animals and though there were two mallard ducks right near him, Mattie was focused on something else in front of him. What I love about this photo was the fact that the ducks were looking at Mattie and trying to assess his next move!  

Quote of the day: Scratch any cynic and you will find a disappointed idealist.  ~ George Carlin

For the past two years, I have been a part of a research team pursuing the implementation of the Psychosocial Standards of Care. I am honored to be connected to two amazing non-profits: The B+ Foundation and Momcology, and leading psychosocial researchers and clinicians. 

The B+ Foundation is the funder of this innovative implementation research project and Momcology has been instrumental in helping to capture the input and insights of parents of children with cancer. Truly this project illustrates the beauty of effective collaboration and partnerships!

In March, one of the peer-reviewed articles from this study was published. If you are interested in learning more, click on this link.......................

Benchmarks for Psychosocial Staffing in Pediatric Oncology: Implementing the Standards Together—Engaging Parents and Providers in Psychosocial Care (iSTEPPP) Study.

This morning, the research team sent out an email regarding the next publication that is ready to be submitted to a journal. The team was asking for feedback about the paper. Because of the many things I juggle, I am not as available to the team as I would like to be, therefore, I felt that I had to stop what I was doing today, to read the article. Which I did! I read it, provided feedback and sent it along. It was a great feeling that I could absorb myself into something that I am passionate about for two hours and I felt what I accomplished was meaningful. This may sound trite, but truly for me, taking the time to do something other than caregiving isn't easy to do. I have to be very intentional about my choices, because I only have a small window to get things done, because by a certain hour my mom starts pacing around, comes into my office, and wants to go out.  

Later today, I went into the garden and continued planting the things I purchased on Monday. Given today's heat, things needed to get planted and watered, before they died. Things are coming along, but I have more to do tomorrow. The winter was brutal on my plants and it is taking even more work than usual to get this garden started this year. Ironically, I was outside yesterday cutting back bushes and my neighbor's landscaper said hi to me and wanted me to know he thought I was doing a great job! That may sound silly, but he made my day. 

Monday, April 28, 2025

Monday, April 28, 2025

Tonight's picture was taken in April of 2006. Mattie was four years old. I recognize Mattie's expression! What did it mean? It meant that he really did not want to sit still for a photo, but he did comply. Mattie got used to my photo requests. I did not just take photos on milestone moments, I snapped photos everyday. Every moment to me was worth capturing and THANK GOODNESS I was picture happy, otherwise, I would have nothing left. 

Quote of the day: However many years she lived, Mary always felt that 'she should never forget that first morning when her garden began to grow.' ~ Frances Hodgson Burnett

As we approach May, it is Awareness Walk season for the Mattie Miracle Cancer Foundation. This year marks our 16th annual Walk. I honestly can't believe that the Foundation has been around longer than Mattie was alive and that I have been doing this work for 16 years. I remember shortly after Mattie died, we created the Foundation and I did not know if I was coming or going. I also did not really have a grasp for what the focus of the Foundation was going to be or even if we were going to be able to accomplish anything. 

I will never forget that within the first few months of creating Mattie Miracle, another advocacy group basically told me in no uncertain terms, that we probably wouldn't make it! As this person said, childhood cancer non-profits typically last three years, and then they flounder. This person's statement has remained with me over all these years. Naturally when I heard what she was telling me, I felt dejected. It was daunting! Then if you know me well, you know I viewed this as a challenge. There was NO WAY Mattie Miracle was going to flounder, especially since the Foundation is in memory of Mattie. 

What helped to create the Foundation's psychosocial mission? Two things. The first was most likely my education, training, and mental health background. I went through Mattie's cancer journey with a psychosocial lens and it was clear from our experience what was missing and inconsistent. The second is doing research and connecting with the top psychosocial minds in the childhood cancer space. After Mattie died, I started reading articles about medical traumatic stress. Mind you when Mattie was experiencing this, I called it PTSD, because that was what his symptoms clinically looked like. No one told me about medical traumatic stress, I had to learn about it on my own. I can't tell you how much it meant to learn that there was a term that described what Mattie and I went through. It normalized something that felt very abnormal. 

I can recall one day after reading an article on medical traumatic stress, that I reached out to the author of the study. The article meant that much to me and I wanted this researcher to know this! Do I think most parents reach out to researchers? I don't know, maybe they do! This is where having a PhD evens out the playing field with the professionals I am interacting with, and in many ways we can talk the same language, which helps. It was from that one article that I read, that it opened up a whole new world for me and the Foundation. As this researcher (who happens to be the leading authority on medical traumatic stress in our country) responded to my email and from there our relationship bloomed. Do you know that this researcher and I still work with each other today? 

It was from that connection, I got to meet and work with countless other amazing psychosocial professionals, who valued our vision to create Psychosocial Standards of Care. I will spare you the details, but what I think is absolutely transparent is that Mattie's journey is alive and well within me and his life guides the work I do with Mattie Miracle. 

Our Annual Walk is the largest fundraiser we host each year and it helps us generate more than 80% of our operating budget to support our psychosocial programs and initiatives. I invite you to check out the links below, and I welcome your support of my Mattie Moon walk team. All donations are tax-deductible. We also run an on-line raffle and this year are featuring 10 wonderful items. All raffle proceeds go toward our overall Walk fundraising goal! I am deeply grateful to all our supporters, we couldn't make the Mattie Miracles possible without you. 

Check out my Mattie Moon team!

Mattie Miracle Raffle

Tickets are $5!

Celebrating 15 Years Video

Sunday, April 27, 2025

Sunday, April 27, 2025

Tonight's picture was taken in April of 2008. Mattie had turned six years old and that year he had two birthday cakes. One at his party and the second was a small ice cream cake for just the three of us. I grew up on Carvel ice cream cakes for my birthday, and I wanted to pass along the tradition to Mattie. The beauty of a Carvel cake is it has vanilla and chocolate ice cream layers. Mattie HATED chocolate, and LOVE it. So I would cut my vanilla layer out of my cake and give it to Mattie, and I would pull out his chocolate layer and eat it. We complemented eat other in every way! 

Quote of the day: Being deeply loved by someone gives you strength, while loving someone deeply gives you courage. ~ Lao Tzu

When Mattie died, weekends became very complicated times. Why? Because when he was alive, we made weekend plans, we had adventures, walks, schedule playdates, parties, gatherings, and school events. However, all those things came to a screeching halt when he died. It was like our entire world as we knew it ended, yet we were still alive, we were still breathing, but floundering and different. We were different because most people couldn't relate to our pain and loss. 

Though my circumstances are quite different now, that floundering feeling remains. Except now it is exacerbated by caregiving. I do not live a normal life and haven't for decades. My life isn't just one trauma and loss, it is filled with multiple traumatic events that have built upon one another. The lack of structure on weekends is hard and the demands for caregiving are ever present. 

Easter was last Sunday, and I finally pushed myself to gather all my Easter decorations up, wrap them, and store them for the year. The way I am feeling, I could have left Easter up indefinitely. I am still struggling with carpal tunnel issues, but I have to get things done around this house, so resting is not on my list. 

Each day I wake up thinking.... will the reality of what has happened to me change? Will things make sense? This is the first time in my life where I just can't accept what is happening, mainly because I know my marriage, I knew the person I was married to, and I knew the truth about our life together. I just can't understand how someone I spent my entire adult life with could leave me managing my parents, caring for a house, paying bills, and countless other issues alone! I am signing off for today, in hopes that tomorrow is a better day.