Thursday, March 6, 2025

Thursday, March 6, 2025

Tonight's picture was taken in March of 2008. That day we took Mattie to Roosevelt Island. Truthfully it did not matter what the weather was like, with Mattie we were outside year round. Roosevelt Island was about five minutes from our home in Washington, DC and it was the BEST BACKYARD for an adventure! It is still hard for me to believe that four months after this photo was taken, Mattie was diagnosed with cancer. 

Quote of the day: Trauma is not what happens to us, but what we hold inside in the absence of an empathetic witness. ~ Peter A. Levine

I had worked myself up so much last night over the backyard lights, that I had a hard time staying asleep. I could fall asleep, but just couldn't stay asleep. I think I finally got to sleep at 3am and of course had to get up at 6:15am. When things arise in the house, I do panic because I fear I won't be able to manage the problem or afford to manage the problem. I can't believe that I have gotten to this stage of my life, and I am facing so many major stressors. The one good thing to report is my new outdoor extension chord arrived today and I set it up and the lights are ON! I have to keep reminding myself that I am resourceful and that I saved myself an electrician bill to solve this problem!

This morning my dad's physical therapist came over for a session. I truly wanted to run chores while she was here, but I know that with my dad's bathroom issues, the therapist and my mom can't manage him. Today's session was a disaster. My dad has irritable bowel syndrome (IBS), on top of his dementia and other health issues. IBS has different forms and my dad has all of them. Today, he was constipated, which in my house is like hell on earth. Because of his dementia, my dad becomes fixated on having to go to the bathroom, and there is no peace. It is so stressful helping him at times that it takes all the resources I have to keep it together. My dad was running to the bathroom every five minutes during his therapy session, because his brain was telling him he had to go. But of course once he was there, he did not go! 

There is nothing to explain the cause of his constipation and I would go so far as to say that his diet no longer impacts his IBS. Instead, I would say it is a daily problem, and after several hours of this today, I was truly frazzled. Frazzled from his angst, frazzled from his moaning in pain, and just plain frazzled. 

About two weeks ago, I started an exercise routine in my basement. I haven't done it as consistently as I have wanted, but I do continue to do it when I have a moment. For me, motion and movement are my therapy, which is why I am looking forward to warmer weather as I can be out in the garden. In addition, I have decided to take on staining and sealing our deck, so wish me luck with that chore too! Some times there aren't enough hours in the day, and given that I have spent my entire adult life married, I always could share tasks, issues, and stressors with my other half. It is a major adjustment facing life alone. It isn't how I chose to spend my life or my future, and I would like to say that with time my brain and heart have accepted this reality, but that would be inaccurate and a lie.  

Wednesday, March 5, 2025

Wednesday, March 5, 2025

Tonight's picture was taken in March of 2008. I will never forget this moment in time. Mattie came home from kindergarten and that afternoon we went outside to our commons area for him to fly his kite. Our commons area was absolutely perfect. It was enclosed and accessible to only residents, and the wind blew in just the right way to make it an ideal condition to fly a kite. We accomplished a lot together in this commons area..... Mattie learned to walk, fly a kite, ride a bicycle, play with our resident Jack Russell Terrier (who belonged to our neighbor), and drive his ride on vehicle, Speedy Red. 

Quote of the day: You have to understand that PTSD has to be an event that you experience, a very traumatic event. And actually, there is evidence that brain chemistry changes during this event in certain individuals where it's imprinted indelibly forever and there's an emotion associated with this which triggers the condition. ~ Dale Archer

I was going to write about something completely different tonight, but then as I always say.... NO DAY IS COMPLETE FOR ME WITHOUT A CRISIS.

I had just finished making dinner. I spent time chopping up olives, tomatoes, and artichoke hearts and made a very tasty pasta tonight. I was in the process of getting my parents to the dinner table and serving dinner, when I happened to look outside the window. I SAW NOTHING. I saw nothing because half of the lights in our backyard weren't working. 

Let me clue you in, when dealing with someone who is traumatized like myself, the littlest things can set us off. The reaction may not be in line with the problem! I can immediately go into panic mode because I constantly live in fear that things will happen that I can't fix or control. This is not just some unfounded reality in my life that has led to this anxiety but instead it is anxiety that exists as a result of multiple traumas. 

I went outside with my flashlight and saw this red light staring back at me from the electric GFCI outlet (a safety device that detects imbalances in electrical current). Typically there is no light on or a green light, so I knew there was a problem. I tried pressing the reset button of the GFCI, that accomplished nothing. The light remained red. So I went back into the house and looked at the circuit breakers. One was tripped, so I reset it. I went back outside, hoping that would have solved the problem. It didn't! I assure you at that point, I began to panic. I panic because I always worry.... how I am going to fix this and how costly will this fix be? 

Okay, I did not give up there! I tried to brainstorm the problem. I unplugged both of the transformer boxes that serve as timers to the outdoor lights from this GFCI. I then took a phone charger chord from inside the house and plugged it into this outlet to see if it would work! It did! So what that told me was NOTHING was wrong with the outlet or the GFCI (after I had reset the breaker and pressed the reset button on the GFCI). So clearly this was a multi-pronged problem!

So then I examined the transformer boxes near the GFCI. I noticed that they were connected to the GFCI outlet through an extension chord (pictured here). I ran back into the house and found another extension chord, brought it outside and reconnected the transformer boxes to a new extension chord. Voilà, it worked!

Then there was light! A glorious sight!!! My plumber says I am learning so much on my own that I am becoming a plumber, and now apparently I can add electrician to the list. 

Circuit breakers, resetting GFCIs, replacing extension chords and reprogramming the transformer boxes for the outdoor lights..... this all occurred after dinner. The problem with my day is this is NOT the only task or issue that I manage. I manage so much from the moment I get out of bed until I go to sleep at night. It is exhausting, it is NO WONDER why I am frazzled.  

Tuesday, March 4, 2025

Tuesday, March 4, 2025 -- Mattie died 784 weeks ago today. 

Tonight's picture was taken in March of 2009. That afternoon, we took Mattie for a walk down to the National Mall. This was the beauty of living in the city, we could walk out our door and be in and amongst all the national monuments and activity. It was a glorious spring day and I brought a loaf of bread with us, as Mattie loved to feed the birds. Needless to say, Mattie made a lot of feathered friends that day! I can picture this moment like it were yesterday, when I thought my family would always be intact. 

Quote of the day: You must remember that your story matters. What you write has the power to save a life, sometimes that life is your own. ~  Stalina Goodwin

This morning I received a message from a friend. As we were talking about issues, she mentioned the term Post-Traumatic Growth. As this was a term she was recently introduced to and wanted to share it. I unfortunately am quite familiar with the term. Hearing it is like petting a cat backwards. I absolutely despise the term. To me it is a Pollyanna, sugar coating placed on a very life altering and painful situation. I hate to break it to the research community, but some situations do not provide growth and they can't be wrapped up in a pretty bow! 

So what is post-traumatic growth? It is a theory that explains this kind of transformation following trauma. It was developed by psychologists Richard Tedeschi and Lawrence Calhoun in the mid-1990s, and holds that people who endure psychological struggle following adversity can often see positive growth afterward.

To evaluate whether and to what extent someone has achieved growth after a trauma, psychologists use a variety of self-report scales. One that was developed by Tedeschi and Calhoun is the Post-Traumatic Growth Inventory (PTGI). It looks for positive responses in five areas:

1. Appreciation of life.
2. Relationships with others.
3. New possibilities in life.
4. Personal strength.
5. Spiritual change.

Given this whole concept sets me off, I decided to do a search on the Internet to see if this term is controversial or has been disproven in some way. Turns out, I am onto something because research is now indicating that post traumatic growth may be associated with a higher risk of mental illness. NO SURPRISE TO ME! To learn more, check out the Complicated Truth of Post Traumatic Growth. 

Leading this research is Dr. Eranda Jayawickreme, a psychology professor at Wake Forest University. He mentioned there is an intuitive appeal or I would say a hope that from a trauma experience we can put it into context, learn, and grow from it. That there is a reason for our suffering! But as Dr. Jayawickreme delved into the Post Traumatic Growth research, he found serious flaws in the concept. 

Dr. Jayawickreme’s main concern, is the scientific method behind the research and the way that post-traumatic growth is most commonly measured. He does not doubt that some people experience a positive transformation after trauma, but believes that these research flaws have led the research community to overestimate how likely such growth is to happen. 

One issue is the phrasing of the survey items. Almost all studies use the “Post-Traumatic Growth Inventory” (PTGI), in which participants are asked to consider a series of statements describing potentially positive changes and then report how often they have experienced them, from 0 (“I did not experience this change as a result of my crisis”) to 5 (“I experienced this change to a very great degree as a result of my crisis”).  As Dr. Jayawickreme says, “You can't report a change for the worse." This could prime people to report growth, as participants may be reluctant to circle 0 for every single question.

I think we are all individuals and that translates down to traumatic experiences as well. Some of us may want to look at the positive, to evaluate and reflect on growth and others of us, may find this difficult. For me defining the multiple traumas I have faced and associating any of them with growth is offensive. I think it is impossible to talk about trauma without talking about distress and perhaps resilience but maybe those of us faced with trauma should just be supported whether we are reporting distress or growth (or both at the same time) without imposing a narrative or JUDGMENT on our recovery. 

Monday, March 3, 2025

Monday, March 3, 2025

Tonight's picture was taken in March of 2009. Mattie was home between hospital visits and that day he wanted to out onto our deck and play in his sandbox. Naturally I was concerned about Mattie doing this as he had a Broviac catheter (a type of central venous catheter that is surgically implanted into a large vein in the chest. It is used to provide long-term access to the bloodstream for administering medications, fluids, blood products, and performing blood tests) hanging from his chest. I was always paranoid about this catheter getting infected, tugged or pulled. But I did not want Mattie to stop being a child.... so out he went and we even brought out a space heater because we did not want Mattie to catch a cold (another deadly sin when on chemotherapy). Though Mattie couldn't walk, he made the most of what he did have, and truly this is a learn that I continue to absorb on my hardest days. 

Quote of the day: Your healing is about you. It doesn't need a stamp of approval. It doesn't need to make others comfortable. It's about you. It's personal. It's worth everything. ~ Yasmin Mogahed

I posted tonight's picture above, because today I was in my old neighborhood in Washington, DC. I took my mom for her hair and nail appointment. Could I go to a salon closer to my current house? Probably! But I don't! Instead I return HOME! The city was my home for over 20 years and I used to love my old neighborhood and life. In any case, I have been going to this particular salon since I was in my 20s. Back then, the salon was in its hay day. It had photos lining the walls of famous movie stars and politicians who frequented the salon and each of these photos was personally autographed. This may sound odd, but this was something that was done in the past at both salons and restaurants. A by gone era if you will. 

I have known my manicurist for years. I met her through my hairstylist. So in essence I have known this family for decades. We practically grew up together, shared many ups and downs of life. The funny part is my manicurist calls me her "therapist." Which of course is a joke, since I am NOT her therapist. But I listen and I care! Any case, she was catching me up about her life today, and she told me how she was reunited with someone in her family. I have been predicting that this day would come for YEARS! I remember when I first made this prediction to her, I said.... mark my words, you both will reunite again, because you both at the core love one another. She did not believe me at the time, as there was great hurt that resulted from their connection. But today, about 8 years later.... guess who was right???? That is right.... ME! Don't ask me how I knew this would happen, but since I intimately knew and understood the situation, my gut said it would happen. No I am not clairvoyant, just perceptive and read people very well. 

It was the day of dealing with all sorts of crises from my health insurer changing my name. They made my first name my last name and my last name my first name. NO I AM NOT MAKING THIS UP! So I had to address this immediately and find out where this name change request came from! From there, I had to manage my mom's health insurer, discuss financial issues, pay Foundation bills, and the list goes on. 

In the midst of my usual juggling act, I looked at my phone and what popped up in my news feed today caught my attention, an article entitled, 11 Subtle Signs Of A Woman Who Has Been Through A Lot In Life, According To Research. It is scary when your phone seems to understand YOU!

On an aside, when I look at myself now in the mirror, sometimes I do not recognize myself. I look worn out, exhausted, and the person I once was, no longer exists. This article lists 11 signs, highlighted in research, that a woman who has been through a lot, and they are:

1. She has disproportionate reactions
2. She seems more mature
3. She's hesitant to ask for and accept help
4. She doesn't trust others easily
5. She's always prepared for the worst
6. She's incredibly empathetic and understanding
7. She's occasionally loyal to a fault
8. She's sensitive to shifts in body language and energy
9. She finds joy in the little things
10. She's not interested in making new friends or being incredibly social
11. She may adopt different personalities around different people

When I look at this list everything applies to me except #11. I am who I am, NO MATTER WHO I AM WITH. But #3 and #4, seem worth highlighting, as I view them interrelated. At an early age, I learned the art of being independent. Why? I am not quite sure. Was it because I was an only child? Maybe. Was it because I moved across the country at age 14 and lost my core group of friends? Maybe. Was it because I had many people let me down and therefore I saw the only one I could rely upon was myself? Maybe. Certainly given my current situation of seeing my marriage of almost 30 years dissolve, I can assure you whatever previous issues I had with asking and accepting help have only been magnified. 

What I know is that I am deeply distraught and emotionally hurt on every level. I put my trust and love into a relationship that I thought I would have for the rest of my life. I do not give TRUST away easily. If I let you in, it is because you have proven yourself to me to be reliable, honest, and to have my best interest at heart. Now that I face probably the worst betrayal of my life, I am quite certain asking and accepting help is NOT going to happen now or into the future. It has further entrenched me to my original philosophy..... I have to be self reliant and rely on NO ONE. Which is why tonight, after a year of therapy, I decided to terminate it. I think the only reason I sought therapy to begin with was because others thought I should. Reminds me of when Mattie died, I got a lot to advice but all of it was misplaced and I am afraid based on ignorance! But I know me and I know when something is helpful and when it isn't! Since I deem therapy ineffective for my level of heartache and trauma, I decided to follow my gut instinct tonight. 

Following your gut instinct is actually very freeing. Terminating therapy is probably one of the most empowering things I have done this year, and trust me I have had to do all sorts of things that were new to me in 2025 like purchasing a health insurance plan and paying for a membership to get 24/7 tech support. Terminating therapy means to me that I am trusting my instincts, and what I know to be true. NO ONE can solve my hurt, anxiety, and fears. Solutions take time and I have to be the one who directs these steps, in the meantime, I live and breath #5. Each day I wake up and wonder what shoe will drop today? What crisis will arise, or what fire will I have to put out? As the article astutely points out, these are all the signs of a woman who has dealt with A LOT in her life. If you come across a woman in your life with some of these signs, think twice about what she is facing. It may not be a reaction to YOU, but instead a by-product of her life's circumstances. 

Sunday, March 2, 2025

Sunday, March 2, 2025

Tonight's picture was taken in March of 2009. Mattie was in the child life playroom and this Wii video game was set up for him. It was a competition between him and his nurse, to see who could do the better yoga pose! What you may not understand by looking at this photo was the fact that Mattie was unable to walk or truly stand independently because of his limb salvaging surgeries. So though this was a game, it was also part physical therapy. It was amazing sight to see how gingerly Mattie moved in order to achieve this pose and how determined he was to participate! 

Quote of the day: The most difficult wounds to heal are those whose scars go unseen to the eye. They are marks upon the soul that you carry through existence until it becomes your master… or you become theirs. ~ Madison Chase

This morning, I was greeted by a message from a friend. She is reading a book about heartache, and one of the passages described the author's trip to a tea shop. The author was discussing her anxiety and her non-stop focus on the dissolution of her marriage. However, when she went into the teashop, her goal was to use her senses and absorb the environment around her, in order to have a mental break from her anguish. Literally my friend took snapshots of the pages she wanted me to read. 

In any case, the author recounts for her reader the experience she had in the teashop, how she was concentrating on her teacup, savoring the fragrance and the taste of the tea and the flavor of the muffin she was eating. She also observed the people coming and going into the shop. She was noticing what they were wearing, the colors on their clothes, and the sounds they were generating by walking passed her. What was the purpose of this sensory experience? It was a simple mindfulness technique that can be used anywhere! You don't need 30 minutes, you don't need a quiet space, you don't have to be out in nature, you just have to BE!

Normally, if someone tells me to mediate, be mindful, or relax, they are going to be met with either a look from me like they have two heads, or I will verbally push back on you. Stillness, quiet, calm, and relaxation are NOT words to describe Vicki! Therefore asking me to be "mindful," is like asking me to run my nails along a chalk board! It isn't going to happen. 

However, the way this author described her experience within the teashop resonated with me. It wasn't like she was discussing mediation, what she was highlighting to me was one of my favorite coping mechanisms.... DIVERSIONS AND DISTRACTIONS. Except these distractions were very intentional and involved concentration. I am okay with that and I liked this passage I read so much, that I plan on trying it when getting tea with my mom. 

Anyone who has experienced heartache of any kind knows how all consuming it can be. It is like a vicious cycle, you are constantly thinking about it, it invades your mind, body, and spirit. The more you try to avoid it, the more pervasive it is. Which is why the author's point about taking breaks from this chaos is important, and I would imagine as these breaks become more successful and familiar, the hope is that the angst, anxiety, and sadness the heartache produces lightens over TIME, MORE TIME, and MORE MORE MORE TIME. 

All of this may sound hokey or it may interest you. But focusing on the senses is a proven mindfulness technique for handling anxiety, by taking someone out of their panicked thoughts and bringing them into the moment. It also helps interrupt rumination, when your brain decides to gnaw on one particular thought for longer than is necessary. If you are like me and on the fence about this, think about the examples below with hearing, touch and sight. Will any of this slow down our overloaded brains? I don't know, but it is easy and worth a try. 

1. Hearing --Focus on one sense at a time. Hearing maybe one we first gravitate to, so for example imagine making a cup of tea. Listen to everything—the whisper of the boiling water, the clank of the spoon as you put it on the counter, the splash of the water as you pour it into the teacup, and the splat of the teabag as I drop it into the cup. By paying attention to the sound of things, it can cut the mind chatter that rattles through our heads.
2. Touch -- Pay attention to your feet as they touch the ground is a common technique, and a very effective one to help ground yourself. Going back to the cup of tea, you can also notice the feel of the cup in our hands and the heat from the tea as you drink it. If you’re wearing something comfortable, paying attention to the clothes against your skin (something you don’t even think about, usually) can be surprisingly centering. 
3. Sight -- We’re constantly focused on sight to get around, so it can be tricky to be mindful of it since it’s a perpetual stimulus. But one thing that can work is focusing on colors. You can focus on one color at a time, noticing all the red things in a room, for example. Or you can notice each color in individual objects—a blue cup on a white counter, next to a silver knife with a black handle. Observing colors helps you notice things, instead of skimming past them, which helps keep you in the present moment.

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. 

Saturday, February 22, 2025

Saturday, February 22, 2025

Tonight's picture was taken in February of 2009. That day Mattie received boxes of Valentine cards from all four kindergarten classrooms at Mattie's school. In addition, a friend gave Mattie this huge lollipop! Mattie never ate it, he liked it too much and used it more like a magic wand! 

Quote of the day: There are wounds that never show on the body that are deeper and more hurtful than anything that bleeds. ~ Laurell K. Hamilton

This morning, my friend who is also enduring a similar situation as mine, wrote to me. In her writings, she shared this photo. She provided me with NO context, other than this photo! It did not take me more than a second to know what was being conveyed to me.... deep sorrow, loss, and trauma. I responded to her immediately because I wake up and go to sleep totally relating to her feelings each day. In the process of writing to her I wanted to know where she found this photo, because I wanted to know if these sculptures really existed somewhere.

I came to learn that this is a sculpture entitled, Dark Elegy by Suse Lowenstein. She is a sculpture artist and created this deeply moving tribute of family members devastated by the loss of their loved ones in the terrorist bombing of Pan Am Flight 103 over Lockerbie, Scotland (1988). In fact, the artist's son was killed on this flight and like so many of us who have traumatically lost a child, she had to put that horror somewhere. She needed an outlet for this traumatic loss and grief. She used her creativity and in the process these sculptures became a therapeutic tool for many other family members affected by this attack. 

This sculpture consists of 75 larger than life figures (comprised of stone and fiberglass). It depicts the very moment in which these women learned of the death of their loved one(s) aboard flight 103. This sculpture is located in Montauk, NY. 

Here is a two minute video clip of Suse Lowenstein:

In Suse Lowenstein's own words:

"As a sculptor, it is natural for me to shape, form and translate my emotions into large human figures. At this point I started creating other figures in various expressions of grief, pain and rage. When other women who had lost loved ones on Pam Am 103 learned of my work, many expressed a desire to contribute to this project called “DARK ELEGY.” One by one they come into my studio, step onto a posing platform, close their eyes and went back to December 21, 1988, to that horrible moment when they learned that their loved one had died. They allowed their bodies to fall into the position that it took upon hearing that most devastating news. Some scream, some beg, some weep, some pray, some curl into a ball, while others raise their fists in anger and despair. This is the moment that I freeze in time. This is the pose that I shape into sculpture. I have asked the women to give me a small memento of their loved one which I then place into the sculpture generally into the heart area. Sometimes it is a show lace, a sock, and earring, a photo, a poem or whatever they wish. One day these items will be found and provoke thoughts and remembrance. Each figure is inscribed with the names of both the woman posing and that of the person lost. In this way each sculpture becomes a private statement. I believe that is is quite unusual for someone to portray such tragic, raw emotion, not as an outsider looking in, but sadly as one of those portrayed."

Clearly how this artist and I lost our sons is very different, yet the psychosocial impact is quite similar. It is a loss that consumes your mind, body, and heart. Not just on the day it happens, but forever. Observing each of the 75 sculpted poses, resonated with me. It is the honest and visceral depiction of catastrophic loss and trauma. A loss that brings you to your knees literally and figuratively and if you have experienced such intense emotions, then seeing each of these sculpted bodies individually or in totality, provides the immediate response....... I UNDERSTAND! THIS IS ME! 

I realize that Dark Elegy is a visual memorial to loved ones who died in the Pan Am 103 attack, but I would say it is art that is universal. It speaks out to all of us who have faced an indescribable tragedy, a horrific and unexpected loss, and a trauma that has transformed us in ways that words can not possibly do justice. When there are NO WORDS, thankfully there are such life works like Suse Lowenstein's that helps us illustrate to others that this is HOW WE ARE FEELING!

Friday, February 21, 2025

Friday, February 21, 2025

Tonight's picture was taken in January of 2006. That day I visited Mattie's preschool class with homemade gingerbread houses. The children got to use royal icing to attach candies onto the houses. This activity was very well received by all the children. So much so, that other classrooms came into Mattie's room to participate in decorating the houses. Pictured with me was of course Mattie, his best buddy Zachary and his friend Nancy. Zachary and Mattie were inseparable, starting on day one of preschool. I got to know Zachary so well, that he was almost like a second child to me. When Mattie was diagnosed with cancer, that did not stop their special bond. Instead, Zachary learned to accommodate to Mattie's needs and they found a new way forward. I learned a lot from these two friends. 

Quote of the day: There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers. ~ Rosalynn Carter

Today is National Caregivers Day, a time to recognize and honor caregivers and the important work that we do! The Providers Association for Home Health & Hospice Agencies, PAHHHA, established the third Friday in February as National Caregivers Day in 2015. They aimed to dedicate a day annually to recognize and appreciate caregivers everywhere. The first celebration of the holiday took place in 2016. 

If you know a family member or friend who provides care to a loved one, THANK them today! I would say that family caregivers are the unsung heroes in our world. We do tasks around the clock, without payment and without positive feedback. 

AARP put together this two minute video highlighting all that family caregivers do in any given day! I found it moving. 

To learn more about caregiving, check out: Caregiving in the U.S. 2020 - AARP Research Report). Some caregiving facts.....................

• One in five Americans (21.3 percent) are caregivers, having provided care to an adult or child with special needs at some time in the past 12 months. This totals an estimated 53.0 million adults in the United States, up from the estimated 43.5 million caregivers in 2015.
• 1 in 3 caregivers of someone age 65 or older reports the presence of Alzheimer's or dementia.
• When a caregiver provides care to someone with a memory problem, they are more likely to help with getting in and out of beds and chairs, getting dressed, getting to and from the toilet, bathing or showering, feeding, dealing with incontinence, tasks more frequently rated "difficult" when caring for someone with memory loss.
• Nearly one in five (19%) are providing unpaid care to an adult with health or functional needs.
• More Americans (24%) are caring for more than one person up from 18% in 2015.
• More family caregivers (26%) have difficulty coordinating care up from 19% in 2015.
• More Americans (26%) are caring for someone with Alzheimer’s disease or dementia up from 22% in 2015.
• More Americans (23%) say caregiving has made their own health worse up from 17% in 2015.

These four graphics from the AARP report caught my attention. I go about my everyday tasks and most of the time, I am not absorbing just what a face alone on any given day. Maybe because this isn't my only trauma and heartache I face. However, this bar graph shows me at the high end of caregiving, with over 41+ hours weekly! The average caregiver works (without pay) for about 23 hours a week, helping a loved one. 

Family caregivers (which are family members providing care) on average help a loved one with 1.7 activity of daily living tasks listed here. I do all six tasks daily! All for my dad and some for my mom.

With regards to instrumental activities of daily living, I manage ALL 7 for both parents. 

Given the hours I provide care and the intensity of tasks, I fall in the high intensity group of caregivers. 

This graphic is truly interesting and yet NOT surprising to me. When family caregivers are asked how many have outside support, only 31% report to have such help. The remaining 69% are like me. 

Caregiving is NOT a new role for me. I come from a long line of caregivers and I believe I learned the art from my maternal grandmother! I have a dear cousin who has devoted her life to being a caregiver and therefore if you think there is a genetic component to being a caregiver.... perhaps that is true! Caregiving is in my blood. If I see a person in need, my immediate reaction is to HELP! I have been like this since I was a kid! In high school, I never left school on time. Why? Because I was sitting and listening to friends and acquaintances. From an early age, people naturally felt comfortable talking to me. I take that as a high compliment and I can't think of a better role in life than helping other people. You never know what a smile or kind word can do to a person struggling or having a bad day. 

Is caregiving difficult? 100% YES! It requires putting your own needs, desires, and freedom on hold. When Mattie had cancer, I can't tell you how many people recommended that I take a break. That I care for myself and get rest! I did not listen! I did not want to live with any regrets. Mattie was my number one priority and I will always be at peace knowing that I made that choice. Once Mattie died, did I get sick? ABSOLUTELY! I was worn out, fragile, and constantly ill for months, if not years. So I am well aware of the toxic level of stress I am dealing with from both caregiving and the dissolution of my marriage. All I can say is I am cognizant of it and take it one day at a time. 

To all my fellow caregivers, my hat is off to you. I admire you greatly and may you always know the incredible difference you are making in the lives of those in your care.  

Thursday, February 20, 2025

Thursday, February 20, 2025

Tonight's picture was taken in 2007, on Day #107 in Mattie's preschool year. That day Mattie got to bring in several items from home that he wanted to share with his classmates. You can see the red legs of an Elmo doll on the table behind Mattie, along with a jack in the box next to Elmo. These were the toys Mattie wanted to show the class, primarily because Mattie LOVED Elmo. But this Elmo was battery powered. So, Elmo danced and sang! The jack in the box, also had motion and song. I will never forget the excitement of that day! Mattie learned so much at this preschool. He learned the art of making and keeping friendships, Mattie learned the art of sitting still and listening, not to mention taking turns. Mattie was born on, and was curious, and inquisitive. His preschool understood this and natured these wonderful skills. To this day, the moms I met at this school are still some of my closest friends. It was a tender and special time in our lives. 

Quote of the day: I learned there are troubles of more than one kind. Some come from ahead, others come from behind. But I’ve bought a big bat. I’m all ready, you see. Now my troubles are going to have trouble with me. ~ Dr. Seuss

When we bought this house in 2021, the former owner put in a lovely fountain by the porch. I love the sound of a fountain and I try to take good care of it throughout the year. Since I do not know how to shut down this fountain for the winter, I decided to buy a bird bath warming coil. This coil gets plugged into our outside socket and runs throughout the winter. This coil enables the fountain to NEVER freeze! What I have found is that the birds love the fountain, even in the winter time.

Today was the FIRST day I saw countless Robins in the fountain and all over the yard. I view this as the sign of hope.... spring is coming! 

Literally there were Robins in the front yard and all over the backyard. 

Guess who was very engaged over the Robin sightings? YES Miss Indie! She was practically running around from window to window to catch a glimpse of these birds. As silly as this sounds, the antics of Miss Indie brightened my spirit today. 

Maybe it was the grey day, the fact that it was freezing, or just my day to day existence, but today was a down day for me. When I feel this down, I literally can't see a way forward. Naturally I do not have the time to truly focus on this feeling, because I am pulled in twenty different directions on any given day. But if I wasn't caregiving, then what? I have a lot of then what's in my life now! 

I just can't come to peace with what has happened to me and I can't accept that this is what my future holds. I did not get married at age 25, with the thinking that I would age alone. I got married and had a child because the notion was this was going to be my future. How do we course correct, when every aspect of our life falls apart? I may have done it once when Mattie died, but I just don't have it in me now.