Saturday, March 1, 2025

Saturday, March 1, 2025

Tonight's picture was taken in March of 2009. That day we were in the outpatient clinic, waiting for Mattie to receive his experimental treatment infusion. However, Mattie requested a BIG pretzel! Truly this request was out of left field, as this was not something Mattie ever wanted before. But that day, he was fixated on a pretzel! Of course I couldn't leave the hospital to find such a treat, so I contacted Team Mattie. As you can see, within a few hours, viola.... there was a pretzel!

Quote of the day: After a traumatic experience, the human system of self-preservation seems to go onto permanent alert, as if the danger might return at any moment. ~ Judith Lewis Herman

Tonight's quote is spot on! Once you have experienced a trauma, it is NOT something you ever get over. It gets incorporated into your DNA. In fact, when you perceive a future treat of any kind, I would say the body kicks it into gear, because it has been programmed to be alert, identify, and respond to threats. The body, mind, and spirit in a way have mastered the mechanics of facing threats and therefore it is easy to jump right back into that heightened state of existence at any time. 

I have recently learned of a friend's cancer diagnosis. If you mention cancer to me, I immediately jump into action. As if I have been programmed to know how to react. First off, I know that as much information about my friend's case needs to be obtained, compiled, and understood before meeting with any doctor. If you think you are going to meet an oncologist and be able to process all that needs to be conveyed, that would be very wrong. They don't have the time, and second of which, the patient and family learn that communications between themselves and doctors is DIFFERENT! Why? Because our health care system talks in medicalese! MEDICAL JARGON! This is the language of medicine that is feely thrown around (terms, verbiage, treatments, acronyms, etc), as if the average person is well versed in it and can easily follow along. WRONG! Especially when under great stress and duress, a lot isn't absorbed or comprehended. Which is why I helped today compile data and make sense of it. 

I came to my own conclusions, but naturally I am not a medical doctor. So what did I do? I reached out to Mattie's oncologist. Within minutes, she responded and later today we had a conversation after she consulted with several specialists on the type of cancer in question. THIS IS WHAT MATTIE HAS DONE, THIS IS HIS LEGACY. Through Mattie's cancer journey, I got educated and made long-term connections with amazing people. I became an even fiercer advocate and I learned how to maneuver in our complex medical system. I told Mattie's oncologist that I wasn't sure if I was reading reports correctly and whether my conclusions were correct. Want to know what she said to me? She said, "Vicki you are a bright woman and YES you are absolutely correct on your interpretation of the data." I view this as a very high compliment coming from the source. 

Needless to say, I maybe inundated with caregiving and my own issues, but I am making time for this major issue. I will be joining medical phone calls and trying to assist and lend support. While most people wouldn't feel comfortable intervening and participating, this is very NORMAL for me!

Later today, I took my parents out to our local diner. We go there every Saturday. Because of what I was juggling today, we got there a little later than usual. When we arrived both the management and the servers came over to greet us! They were all worried about us, because we were LATE. So much so, that now Jason, our server, has my cell phone number. When people show such kindness and concern, I find it deeply moving and touching. 

When we came out of the diner this evening, a couple noticed me with my parents. They came running over to help me with my dad. They viewed him as a fall risk. What they quickly learned is that I do not only manage my dad, I manage my mom AT THE SAME TIME. They literally looked at me, with the look of..............HOW DO YOU DO THIS? Truly I don't know, I just do! 

Friday, February 28, 2025

Friday, February 28, 2025

Tonight's picture was taken in February of 2009. This was a typical day inside Mattie's 2x4 of a hospital room. We were running a science experiment on Mattie's hospital table! Mattie loved hands on learning and one thing was for certain, we always filled Mattie's room with all kinds of distractions in order to make the long and arduous days more bearable. Given all that Mattie was enduring, look how engaged he was..... look at that smile! He as an amazing fellow.  

Quote of the day: Trust yourself. Trust your story. All you can do is tell it true. ~ Holly Ringland

There are some days when I do not know if I am coming or going. I did my usual tasks and chores today and thought.... maybe today will be a less stressful day! FORGET IT! When I got home, there was a message on our answering machine. As an aside.... yes I still have the antiquated answering machine on our home phone. Some traditions never die. 

The message was financial related. Understand that I have lived my entire adult life without having to balance a checkbook. I have been conditioned all my life to think that I can't do this.... that Vicki isn't good with numbers. Everyone did me a massive disservice. Because I am actually better with numbers and understanding the complexities of finances than people think. That said, all of this is VERY stressful! 

Just when I think I can stabilize a highly unstable situation, something unexpected pops up. Today's issue practically sent me right over the deep end, and when this happens, I see no way out. All I know is if the rest of my life looks this grim and stressful, I really do not see the point. I have no idea how I managed dinner or anything else for that matter tonight. What I do know is I am absolutely sickened and disheartened that I face all these crises alone. 

Thursday, February 27, 2025

Thursday, February 27, 2025

Tonight's picture was taken in February of 2004. Mattie was almost two years old. This was classic Mattie. He put on my shoes and minutes later was walking around the first floor. Clipping and clopping away! Mattie added a whole new dimension to my life and truthfully that is the beauty of being around children. Life with Mattie was always an adventure, and even the mundane was special. He had a joy for life and was naturally inquisitive. To some extent it was like Mattie knew that he had to make the most out of each day, week, month, and year, because nothing was guaranteed. 

Quote of the day: The loneliest moment in someone’s life is when they are watching their whole world fall apart, and all they can do is stare blankly. ~ F. Scott Fitzgerald

In my house there is always the unexpected. While I was making breakfast, I heard all sorts of noise. Literally it felt like the house was shaking. If I was in California, I would have thought it was an earthquake. I truly did not know what was going on! So I naturally went and looked out the windows. I finally found the issue! I saw a tall ladder up against the side of my house and also saw our landscaping company's truck in front of the house. What was happening? They were cleaning leaves and debris off the roof and gutters. I literally tried to do some of this work in the Fall myself and quickly realized.... NOPE this isn't a smart plan. The roof line is too high up and I can't possibly do this work without injuring myself. So when I have issues on the outside of my house, I call my landscaper. Typically the company doesn't do roof and gutter cleaning for customers, but they arranged to do it for me. I was very grateful because the last thing I need is a roof problem. I was so impressed with the work they did today and after blowing everything off the roof, they picked up everything that fell to the ground. I am not sure where I would be without the help of a short list of professionals that I have assembled to maintain the house. I am grateful for all acts of kindness.  

After dropping my dad off at his memory care center, I went grocery shopping. Somehow I convinced myself that I had to go shopping today, because tomorrow I thought I had a virtual doctor appointment. Turns out I was WRONG. My appointment was today, and I was meant to go grocery shopping on Friday. Literally when the hospital called me to tell me I missed my appointment, I was thoroughly confused. I have to admit that when I missed this appointment, I got very upset with myself! I naturally thought..... I was losing my memory too! But then my realistic and rational side took over. 

I balance a thousand things ON MY OWN, in any given day. I am responsible for two people constantly. Which means everything from hygiene, cleaning, cooking, and managing appointments. I would never miss one of my parent's appointments, but mine are NOT as important to me. Any case, I wrote to my doctor's nurse and apologized. I told her about all that  I am juggling, and she wrote back immediately, saying she understood and to take care of myself. The appointment is rescheduled and I have to put this snafu in the back of my mind. I have no one looking out for me anymore, therefore, the only one managing me is ME. Mind you the appointment was on my calendar, but I somehow did not pay attention to the reminders. 

What this illustrated to me today was that I am overwhelmed and on top of being overwhelmed I truly have very little regard for myself. I view this as a by-product of my life experiences. Each day I wake up and then go to bed with the same feeling of disbelief, disillusionment, and sadness. The life and future I thought I was going to have was erased, and some days I can see glimmers of hope and other days nothing. In a down moment today, I looked out the window and what popped up..... a beautiful red cardinal. A Mattie sign, a reminder that he is always with me. 

Wednesday, February 26, 2025

Wednesday, February 26, 2025

Tonight's picture was taken at the DC Aquarium in February of 2004. This was our first and last trip to his aquarium. In this tank were alligators. You can see both of us through the windows of the tank. Mattie was fascinated by all sorts of animal creatures from an early age and we tried to nurture and educate this interest!

Quote of the day: There comes a time when something changes you... No matter the impact... Where the world no longer beats in time with you. You no longer feel amongst the fray.. And the feeling of loneliness is a brandished armor you wear the rest of your life. ~ Solange Nicole

This morning after I dropped my dad off at his memory care center, I had a scheduled conference call with a fellow childhood cancer advocate. I have known this dad for years, as his child died two years after Mattie. We had the chance to catch up and I got to hear about his new initiative, in which he invited Mattie Miracle to be a part of this work. Why is Mattie Miracle being offered a seat at the table? Because in a way, we are considered the leading advocates of psychosocial care in the country. Mattie Miracle took social and emotional care to a new scientific level, by having the vision to develop evidence based Standards of Care. 

Why were Standards needed? Because there is a medical standard of care for every childhood cancer type. So regardless of where in the country a child lives, they will get the SAME medicines, the same treatments! But that same standardization does NOT apply to social and emotional support! That is very hospital specific and truly depends upon having access to private philanthropy, which funds psychosocial services. Mattie Miracle set out to change this in 2012! As we want ALL children with cancer and their families to have access to optimal psychosocial care! 

How did this happen? We convened over 80 pediatric oncology psychosocial professionals from the US, Canada and the Netherlands, to develop evidence-based Standards for the psychosocial care of children with cancer and their families. We ran a symposium on Capitol Hill, two think tanks at national conferences, and participated in monthly phone calls with the development team! Over 13,000 peer-reviewed articles were included in the initial searches and reviews. From which 1,217 articles were appraised for their rigor and served as the basis for the development of the Standards of Care. The project resulted in the largest and most comprehensive compilation of psychosocial standards to date, and were published in December 2015 in a dedicated supplement of Pediatric Blood & Cancer.  These historic evidence-based Standards define what children with cancer and their families must receive to effectively support their psychosocial needs from the time of diagnosis, through survivorship, or end of life and bereavement care.

In the process of talking about psychosocial issues on today's call, I learned that a fellow bereaved parent in our network committed suicide. I found this news absolutely devastating! As I said on the call today.... this truly could be ANY ONE of us who lost our child to cancer. You may think I am being dramatic, but that actually isn't the case. Here are some facts.................

• The death of a child is a traumatic stressor that takes a toll on the health of parents. 
• Parents who had experienced the death of a child had a 32% higher likelihood of early mortality (defined as dying earlier than life expectancy) than their peers who did not have any deceased children, and they were more likely to die of heart disease.
• Death of a young child (1 to 6 years) was correlated with more suicide in parents, and the risk was highest the month after the death of the child.

Today's call reminded me about how fragile life is, and when faced with multiple traumas and losses, I believe this compounds our vulnerability. I am well aware of my own issues, as each day presents vast emotional challenges that impact me now and into the future. 

Tuesday, February 25, 2025

Tuesday, February 25, 2025 -- Mattie died 783 weeks ago today. 

Tonight's picture was taken in February of 2004. Mattie was almost two years old. That day it snowed! Guess who wanted to go out and in it? Mattie loved being outside, it did not matter the weather! Mattie was fascinated by the snow and though I wasn't an outdoor kind of girl, I rose to the occasion with Mattie. Whatever interested Mattie, became my interests! To this day, I too prefer being outside. It is very freeing to be  surrounded by nature, and if I did not have Mattie, I am not sure I would have ever learned this important lesson. 

Quote of the day: No one ever told me how sorrow traumatizes your heart, making you think it will never beat exactly the same way again. No one ever told me how grief feels like a wet sock in my mouth. One I’m forced to breathe through, thinking that with each breath I’ll come up short and suffocate. ~ Sarah Noffke

This morning we had a visit from a nurse. She was coming to evaluate my mom for a needs assessment. We never met this nurse before but she prepared me that the visit was going to be around 90 minutes long. The nurse required a listing of my mom's medications and a list of her doctor's addresses and phone numbers. Believe it of not, my mom see about 10 different doctors on a regular basis. 

When the nurse arrived, she immediately reminded me of a friend of mine from graduate school. Turns out the nurse is Italian and therefore, all three of us started swapping stories. The nurse assessed everything, including my mom's memory. This is an issue I no long address with my mom. There are some things as a caregiver that you learn to pick your battles. I know what I know, and there is a fine line of knowing something versus trying to share the reality, which can cause frustration and embarrassment. My mom and dad, prior to dementia, were both sharp, intelligent, and gifted people. I remind myself often that they are still these things, but that their memories have been impacted. In any case, through today's assessment, my mom told the the nurse that it was April. She did not know her address, and was confused about other facts related to her medical history. 

We discussed physical issues my mom is facing and then she watched my mom walk and do other activities of daily living. What I do know is without my presence, there is no way either of my parents would be able to live independently. Which of course is a humbling reality for me..... as I face a future without my husband and my son. 

Any case, we survived the assessment. As soon as the nurse left, my dad's first question was.... what is for lunch?! Got to love him. Later on today, I decided to go to the basement. We have a TV there, which is not connected to the cable. I am sure there is probably a way to access the cable account remotely (maybe I have to download an app), who knows. But the TV has an Amazon Fire Stick. So I started playing around with it, and was able to connect to my Amazon account. Why did I want that to happen? Because I decided, I want to use the treadmill and elliptical machines in the basement. When we moved into the house we bought used machines. Since I rarely can leave the house and walk, nor do I really want to without Sunny, I decided to come up with Plan B. I am trying to do ONE thing for myself. Today was the first step to do something for my health and well-being. 

I was on the machines for 40 minutes and started watching a Hallmark movie. For me, Hallmark movies are my therapy. There is NO sadness and unhappy endings in a Hallmark movie. Which at this point is my speed and as much as I can emotionally handle. I am hoping that I can start a routine in the basement that will be beneficial for myself. Time will tell.

Monday, February 24, 2025

Monday, February 24, 2025

Tonight's picture was taken in February of 2003. Mattie was invited to a birthday party. Believe it or not, I brought some of Mattie's favorite toys with us because transitioning to new spaces was challenging at times. So I brought his school bus and the stackable shapes you see in front to the other little boy. Mattie was 10 months old, taking everything in, and guess who got his piece of the birthday cake? ME! In this manner, Mattie and I were diametric opposites. I love sugar and Mattie hated it!  

Quote of the day: Some people's lives seem to flow in a narrative; mine had many stops and starts. That's what trauma does. It interrupts the plot. You can't process it because it doesn't fit with what came before or what comes afterwards. ~  Jessica Stern

When I dropped my dad off at his memory care center this morning, one of the staff greeted me at the door. She said good morning to me and my dad, and then once my dad was inside, she told me how lovely I looked. She particularly commented.... you do such a lovely and light job with your make up. I have to say I wasn't expecting to hear any of this, as my day typically is about one task after the other. For the most part, in so many ways I could be invisible. This morning's comment made me feel like I exist, someone notices me, and since my dad's memory care center understands the inordinate pressures and stress I live with, I really appreciated the kindness. It brought a smile to my face. 

Somehow her comment made me go back to when I was a pre-teen. Why? Because that was when I learned about the art of makeup. When I was around 12 years old, Saks Fifth Avenue accepted me into their make up and modeling course for young girls. This class met weekly and in the class we learned about how to use and apply make up and how to model clothes. After this course was complete, there was literally a fashion show at the store where we were observed by the public. I am not sure why this popped in my head, but that is how memories are, they can get triggered by all sorts of things. To this day, I remember one of the beautiful dresses I got to model on the runway! It was a lavender taffeta dress. With ruffles. I mention the ruffles, because from that day forward, I LOVED ruffles. To me they are just so elegant. In many ways, my life in New York was a happy period. However, at age 14, my dad's job relocated us to California. If I had to account for a time where the trajectory of my life changed, it was in that moment. 

Switching gears, this story showed up on my phone today......

Golden Retriever Reenacts Iconic ‘Dirty Dancing’ Moment with Favorite Stuffy in Adorable Moment

It features this cute golden retriever who is enamored with his Lamb Chop stuffed animal. It is his favorite toy. You have to see the video in the link, because this pup has a staring contest with this lamb chop doll. The article goes on to talk about how dogs can bond with one or two toys and can become protective over it. 

Sunny had a toy box. In the box were all sorts of toys that were either gifts or we gave him. But there was one toy that meant a lot to him. 

It was this red rubber squeaky bone. Sunny won this toy on the day of his good citizenship test. After the test, the instructor allowed Sunny to pick a toy as a reward. Sunny picked this toy. Do not ask me why Sunny gravitated to this toy and for the most part Sunny did not play with it at home. Yet if you should go and touch this bone, Sunny would quickly retrieve it from you, and reclaim it as his own. This bone meant some thing to him! I know it meant something to me, because together he and I trained successfully and achieved this certification! 

Did Sunny have a staring contest with a toy? NO! But like the Golden Retriever is looking at his sweet Lamb Chop, my Sunny, would stare into my eyes for minutes! Truly when Sunny first did this to me, you want to know what I thought? I thought Mattie was channeling himself through Sunny. This was a tell tale trait of Mattie's, we would touch noses and Mattie would stare deeply into my eyes. When Sunny did the same thing with me, I PAUSED! Can the spirit of a loved one be transposed into an animal? I don't know! Do any of us know?? What I do know however, was the eerie similarity between the stares!  

Sunday, February 23, 2025

Sunday, February 23, 2025

Tonight's picture was taken in February of 2003. Mattie was 10 months old! He was sitting in his tot wheels and was zooming around the first floor. It always amazed me how Mattie could steer this big plastic thing around furniture and doorways and not crash into things! Take a guess at who Mattie was looking at? YES ME! Mattie kept track of me and I kept track of him! We were on the same wavelength, we had a strong connection, and we were very much alike.  

Quote of the day: Trauma is personal. It does not disappear if it is not validated. When it is ignored or invalidated the silent screams continue internally heard only by the one held captive. When someone enters the pain and hears the screams healing can begin. ~ Danielle Bernock

I have been writing this blog since July of 2008. That is 17 years of writing daily! Throughout Mattie's cancer diagnosis, death, and on my grief journey I have yet to miss ONE NIGHT. Even when I went on vacation or was on a ship, my computer came with me always! That is because the blog is important to me. The blog serves many purposes.....

• It keeps Mattie's life, his antics, words, and activities alive and fresh in my mind. 
• It is my written memory of our life together. Time can be cruel to one's memory, which is why writing enables me to mother Mattie's memory. It is a daily nurturing, so that I WILL NOT forget the intricacies of my son. 
• It introduces people who do not know Mattie to my incredible son.
• It is an outlet for me to express my thoughts and feelings. 

However, since my divorce, writing is much more complicated and difficult. As I can not freely talk about the issues that plague me daily. There are some nights I get to the computer and I have SO MANY things I want to say, and yet can't. Tonight is one of those nights. Which is why I turn to these three videos of Mattie.

I tend NOT to post videos or even watch them. There is something very raw about seeing a video of Mattie, rather than a photo. Perhaps it is because I can hear Mattie and see him move, which makes the reality of his loss far more profound. Video or no video, I can still hear Mattie's voice in my head. I haven't forgotten what he sounds like! Which is a blessing. 

This was a video I took in the hospital around Mattie's birthday (April 4, 2009). Mattie's school counselor gave him this adorable card and I can't tell you how many times we opened it and listened to it during that hospital stay!

I took this video in December of 2007. Mattie was in kindergarten and that day, his school was having a Holiday event. Each of the grades performed in a choir concert for their families. Mattie had to memorize this song and I took a video of him that morning before taking him to school. The Holiday event was special and the children were required to wear more formal attire. That may not sound like a problem, but for me, it was like a crisis. A week before the event, I was scrambling to buy Mattie a jacket, dress shirt, dress shoes and a tie. Why? Because Mattie had sensory issues and truly did not like clothes that restricted his movement. So I was very worried that whatever I bought, he was going to hate. Needless to say, for the time period that Mattie kept the tie and jacket on, he looked adorable!  

Mattie wanted to learn to the play the piano. He gravitated to music. That day, while home between cancer treatments, he hobbled over to the piano and started to compose his own piece! This piano was given to us by my neighbor. When she moved, she did not have the space to take the piano. Instead, she gifted it to us with the hopes that Mattie would learn to play! To this day, I still have the piano! I just can't part with it.