Saturday, May 24, 2025

Saturday, May 24, 2025

Tonight's picture was taken in May of 2004. Mattie was two years old and that weekend we took him to the National Arboretum. This wonderful garden had a koi pond and as you can see Mattie was staring at this big fish rising to the surface to get some fish food. Mattie was cautious, he wasn't sure if he wanted to get too close or feed these fish. So naturally I did it first, to show Mattie that this was a friendly fish and was only interested in coming to the surface for the food. The many wonderful adventures with Mattie..... weekends were never boring, as we were always out exploring. 

Quote of the day: Sometimes the strongest thing you can do is admit you don’t feel strong at all. ~ Glennon Doyle

On Friday, my dad came home with these rocks that he painted in his memory care program. He then dated them and wrote our names on them. I have three on display in the kitchen and three on display on the porch. My dad is very proud of these creations!

I feel physically and emotionally exhausted this weekend. I am not sure any one thing explains how I am feeling. I spent about two hours today outside weeding and watering flowers. When we moved into this house in 2021, this area was a disaster. My husband created this rose garden for me. A tribute to me and my love of roses. I continue to maintain and nurture this area and the roses are responding. 

I planted these roses and irises in this location last spring. They have taken and are incredibly beautiful. This was another area of the garden with no rhythm or reason, until I took over. 

My wall of herbs! 

Can you see the very tall green rubrum lilies that are growing? I happen to love these types of flowers. My husband planted them for me and they grow each spring and produce beautiful and fragrant lilies. What you can't see is I have a row of them along another flower bed as well. 

These two brown flower pots hold what I call "Mattie's oak trees!" When we lived in the city, we had a beautiful oak tree outside our living room window. This oak was important to Mattie's spring time activity. Mattie would bring home tent moth caterpillars from school EVERY spring. I assure you when he first presented me with a cup filled with caterpillars, I was creeped out. But then I went with it, since Mattie was intrigued and interested! We would put these caterpillars in jars, feed them oak leaves, clean their jars daily and await for them to spin their cocoons. Once they emerged as moths, we would have a moth releasing party on our deck. We studied the beauty of metamorphosis each spring, by doing an activity that Mattie gravitated to and loved! We tried feeding the caterpillars all sorts of leaves but the only ones they would eat were from the oak tree outside our window. 

When we moved out of the city in 2021, we took acorns from this oak tree and planted them in these two pots. As you can see I have two saplings that come back every spring! These trees are a tribute to Mattie's life, his love and joy for exploration, adventure, and his appreciation for all things NATURE. 

Friday, May 23, 2025

Friday, May 23, 2025

Tonight's picture was taken in May of 2003. Mattie was one year old and that day we went to the Reston Zoo. This photo just gets me! Mattie was checking out a goat at his eye level, and I had one jumping up to greet me! Naturally they were looking for food! Whenever I pass this Zoo now, I can't help but have flashbacks. I am transported back to all the priceless moments I had with Mattie.... feeding goats, the pony rides, or riding out on a tractor into the fields to see all the other animals living at the Zoo. Life with Mattie was never boring and the adventures I had with Mattie were a daily occurrence.

Quote of the day: The waves of life will keep coming. It’s your choice whether to stand and face them or keep running up the beach. ~ Tyler Knott Gregson

Has someone you loved died? Are you disconnected from someone you love in your life? Chances are you can answer YES to one or both of these questions! We are human and therefore LOSS (in some shape or form) is part of living. It is the ONE universal characteristic we all SHARE! Yet how we do deal with loss or the trauma associated with certain losses? Don't worry, I will NOT be presenting you with my TOP TEN LIST! Many of you know what I think of lists! I find them trite and they border on insulting that such pain can easily be sifted down to a list. 

What I do think however, is that many of us impacted by loss look deeply to nature and the world around us to stay connected and bonded with those we lost. I will give you two examples that remain with me always. Even though they occurred in 2009, shortly after Mattie died, I think these signs say it all. Sometimes things happen that defy understanding and if they did not happen to me personally, I am not sure I would NOW believe in the power of signs presented in nature. But I wholeheartedly do, and if you are facing your own grief, trauma and heartbreak, I invite you to look for these special signs in nature, that are provided to keep us going. They are reminders..... we are NOT ALONE. 

PHOTO: The car where my two stories occurred!!!!

So I am now taking you back to September of 2009, the month Mattie died. One day I was driving my car (a car that I bought while pregnant with Mattie, so he spent a lot of time in the car both while healthy and when he had cancer) to a friend's house. I parked the car, locked it, and went inside to visit with my friend. After several hours, I came back outside, opened the car door and sat in the driver's seat. When I looked over to the front passenger seat, I was perplexed! Why? Well the back of the seat was completely reclined. I hadn't left it that way, so what caused this to happen? Mind you the only way to move the back of the seat into this position, was with the car on, because the positional adjustments required electricity. There was NO manual way to move this seat otherwise! 

This oddity may not capture your attention as it did me, but perhaps when I tell you the following it will! After Mattie had his second limb salvaging surgery, his right leg was in a cast. Therefore, he could not bend his leg at the knee. Therefore, to transport Mattie back and forth to the hospital, I would recline the back of the front passenger seat so it was horizontal, and while Mattie was sitting the back seat, I would prop his casted leg on the front passenger side seat. That was the ONLY time that passenger seat was reclined. THEREFORE, when I saw this seat magically reclined on its own, I thought Mattie was somehow in the car with me. That he was sending me a sign. Do note, that I never saw this happen ever again! So it wasn't like there was an electrical malfunction. It was an unexplained incident, that to me has NO logical explanation, other than MATTIE WAS WITH ME!

The second unexplained happening, was while I was driving this same car. The radio in the car was OFF while I was driving! Then all of a sudden the radio magically turned on, and not just on, but was playing ABBA's Dancing Queen. Why was this noteworthy? Because this was a song Mattie loved, and many of his physical therapy sessions in the hospital were done to this very same song! How I did not drive right off the road that day, I don't know. I literally felt a surreal feeling come over me while driving, as if someone was in the car with me, turning on the radio, and wanting me to hear this song! If you have a logical explanation for the radio turning on and playing Dancing Queen, please leave me a comment. But like with the reclined front seat, my interpretation of this sign was..... MATTIE WAS WITH ME! 

After Mattie died, besides being devastated, I worried about Mattie. Yes I believe in heaven, and I believe Mattie was headed straight there, but as a 7 year old, I felt like he needed his mom. How would he manage without me? Remember feelings do not need to make sense. They are what they are! These two very bold signs that transpired in MY CAR, I interpreted them as messages from Mattie that he was okay, and though he may not be with me physically, but he is never far away.     

Thursday, May 22, 2025

Thursday, May 22, 2025

Tonight's pictures were taken in May of 2004. Mattie was two years old! Mattie was like my shadow. He was never too far away from where ever I was.... even our small kitchen in the city! In fact, Mattie would come into the kitchen, I would turn on the radio, and then we would dance. So this was a photo capturing one of our dancing moments. 

Also a common occurrence, was Mattie would grab my face and then smoosh his cheeks against mine! It is no wonder that one of my nicknames for Mattie was Mattie Mooosh. 

Quote of the day: Everybody's window of tolerance is different because we've all gone through different things and adapted to our circumstances differently. ~ Jordin James

Recently a friend mentioned the term, window of tolerance. Meaning within this window she can manage and cope with daily tasks and stresses, but outside this window, instability ensues. She was using it in the context of not taking on anything new in her life, because consistency, structure, and routine, were key to her survival. There is a lot of truth to what she is saying because I see it within my own life.... I have a very structured routine and existence. I am constantly doing tasks, and the notion of doing something that isn't part of my daily routine is anxiety producing. I once used to love meeting with friends, going places, and having new experiences. NOT ANY MORE! 

This image summarizes the concept of window of tolerance. It describes the optimal emotional zone we can exist in, to best function, thrive, and manage everyday life.

On either side of this optimal zone are two other zones: the hyper-arousal zone and the hypo-arousal zone.

If you experience internal or external stressors that cause you to move beyond and outside of our window of tolerance then you may find yourself existing in either a hyper-aroused or hypo-aroused state. 

Hyperarousal is an emotional state characterized by high energy, anger, panic, irritability, anxiety, hypervigilance, overwhelm, chaos, fight-or-flight instincts, and startle response. Hypoarousal, by contrast, is an emotional state characterized by shutting down, numbness, depressiveness, withdrawal, shame, flat affect, and disconnection.

Moving outside of our Window of Tolerance happens to ALL of us. It is normal and natural, because we are constantly exposed to all sorts of experiences throughout our lifetime. So perhaps it isn't about staying within this narrow window of tolerance, but learning how to expand our window of tolerance and grow our capacity to be resilient. Again, it is easier to say this than it is to do it!

In the last four years, my window of tolerance, has been forced to expand. When my parents moved in with us in 2021, it was a major adjustment. It was hard going from being in control of my own life, my own schedule, and my own decisions, to giving up all of this freedom, in order to provide around the clock care. Truly it was so overwhelming in the beginning, that I frequented the hypo-arousal stage, in which I blocked out and became numb to what was happening to my life. I was so overwhelmed and depressed by these changes, that I truly needed my spouse to step in and emotionally support me. I needed someone to help me emotionally and share this journey with me. 

When this did not happen, again my window of tolerance was forced to expand. I have had to learn about finances, bill paying, house repairs, keeping a house running, car repairs, the death of Sunny, caring for Indie (our cat) and complex caregiving needs. In this case, I went in the opposite direction, I am constantly hyper-aroused. Which could be how I accomplish all I do in any given day. I am constantly plagued with anxiety, panic, and there are indeed times where I feel so overwhelmed, I don't know how I will live through the next minute. 

What do I do? As the image implies, there are things that can help us expand our window of tolerance. Most of them DON'T work for me, but what does is nature. When I feel like I am going to jump out of my skin from anger or anxiety.... I go into the garden and either weed, pick up sticks/branches, water the plants, or do something active. I have learned that negative energy has to be expended before it consumes me! 

Other than nature, my other MAIN outlet is this blog! For me writing is therapeutic. I remember when I was in graduate school, I was required to attend several Alcohol Anonymous meetings, in order to learn first hand about the 12 step program, hear from people with addictions, and understand the benefits of AA. At first I did not get AT ALL why anyone would find being in a group, sharing your story but NOT getting feedback and direct emotional support helpful! But I NOW get it wholeheartedly, because in so many ways this blog serves a similar role. I write, I share, I process my own thoughts and feelings, without the expectation of a response. In fact, the journey of coping with trauma and grief means telling, telling, telling, and retelling my story in order to be able to find my own internal peace and strength. Telling my stories help to expand my window of tolerance. 

Wednesday, May 21, 2025

Wednesday, May 21, 2025

Tonight's picture was taken in May of 2008. Mattie was six years old and believe it or not, Mattie was diagnosed with cancer two months later. It is truly hard to believe, because there really were no warning signs that Mattie had bone cancer. Not until he entered tennis camp and then complained of arm pain in July of 2008. This photo shows a typical warm weather day for us. Mattie loved being outdoors, on our deck, and creating all sorts of play schemes. Mattie was in the process of designing an obstacle course for his cars and toy trucks. Water was involved as well! Watching him in motion was truly entertaining because Mattie was always exploring, creating, and making life an adventure. 

Quote of the day: The past beats inside me like a second heart. ~ John Banville

This morning after dropping my dad off at his memory care center, I headed around town to mail and hand deliver Foundation items to raffle winners. I literally pushed myself to get this done, because I do not like keeping winners waiting. Now of course in order to get my dad up and ready as well as my mom ready for her physical therapy session, a whole cascade of activities was involved. I get up at 6:30am, in order to get out the door with my dad at 10am. It takes me at least 3.5 hours to manage the morning routine.

One of our raffle winners is a long time contributor. He is associated with another non-profit and today it was lovely to visit with him and catch up. In the process of talking, he suggested that myself and my husband get together with him and a few other non-profit leaders to discuss the challenges non-profits face and how to work around these issues. Actually it was a wonderful idea! To the majority of my world, most people still think I am married. I continue to wear my wedding ring, which in engraved.... always & forever. Why do I wear my ring? I guess it is a personal decision for each person who faces divorce. But for me, I did not elect to get divorced, I haven't walked away from my commitments, and my marriage produced Mattie. So in my mind, this ring symbolizes my life, removing it, means what????? That this part of my life never existed? That this part of my life wasn't real? Or that this part of my life is meaningless? Well it isn't for me. My brain still can't accept what happened because there were no warning signs, no years of fighting and disagreements, and never a need to seek professional help. Which is why I remain in shock and this isn't just a Vicki thing, our family and friends are equally confused! 

When I left this donor's house, I ran into a dog walker. What kind of dog was he walking? Literally a dog that could have been Sunny's twin! This dog gravitated to me and was so friendly. I can't tell you what a ray of sunshine he was and how seeing this cute face, pulled me out of a feeling of despair. 

When my donor mentioned my husband today, I did not correct him, or provide any details. It wasn't the context to have such a conversation. But this feeling of not knowing how to handle the mention of my husband reminds me of when Mattie died. I did not know how to refer to myself.... was I a mom, was I not a mom? Truly depending who I was talking to at the time, my answer could have been different. 

No matter the circumstances of how my divorce played out, it is never a good feeling to be the one left behind, the one to be forgotten, not valued, and disrespected. Ironically I am the one who remains embarrassed by all these behaviors, and anyone who knows me knows that I give 110% of myself to everything. Therefore, I view this as my failure. It takes a lot of rationalization on my part to understand that I did not fail, especially if I didn't know something was wrong. Like peanut butter goes with jelly, I also viewed my husband and me as the perfect combination, as we survived all sorts of things life threw at us. I may not write much about my personal feelings regarding this subject that often, but if you think I have gotten over being heartbroken, you would be incorrect. 

On another note..... as a sequel to yesterday's posting about Prolia. You may recall that I put a complaint in writing to my insurer...... guess who I just heard from tonight? YES my insurer. I have now been assigned a personal representative..... she tracked down my appeal, and is getting an expediated review. Let's hope that there are no more hurdles, but at this point, I always plan for the worst. 

Tuesday, May 20, 2025

Tuesday, May 20, 2025 -- Mattie died 795 weeks ago today.

Tonight's picture was taken in May of 2002. Mattie was a month old and fully on! Mattie's car seat was a God sent. It was the only thing I could put Mattie in for a few minutes and he wouldn't fuss. In fact, that car seat also went into his crib. Literally Mattie would get strapped into the seat and then the seat was placed in the crib. Of course that never lasted long, because for the first three months of his life, he slept on top of me. What I learned about Mattie early on was he did not like lying flat! It was a big no no! 

Quote of the day: A river cuts through rock not because of its power but because of its persistence. ~ James Watkins 

After I dropped my dad off at his memory care center, I came home and was determined to call my health insurer! If you have been following along in my Prolia saga, then you will recall I was due to get  this shot in March! We are now at the end of May, and I have still NOT been approved for this drug. I am supposed to get it every six months. Here is the kicker, this same health insurer covered this drug for me over the last two years. I was on my husband's insurance plan, but this January 2025, I got off that plan and purchased my own health insurance (with the same insurer)! That change was enough to cause chaos. 

The insurer is denying me the drug until they get more data from my doctor. That should be easy enough no? NO! My doctor's office has been faxing an appeal letter on my behalf to the insurer, on a weekly basis since March! After each submission, the doctor's office calls the insurer, only to find out that the fax was never received. I have been dealing with this fiasco for two months. At this point, I am ready to blow. Today I decided after being told once again to fax the appeal, I made a formal complaint to my health insurer, both in writing and over the phone. How on earth can you tell a patient and doctor to submit documentation by fax, if the fax system is clearly not effectively working? Literally no one will answer this question, nor will anyone reach out directly to my doctor's office to process the appeal. 

If this health insurer thinks I am going to back down, or let this issue drop, then they have no idea who they are dealing with, as the one thing I possess is PERSISTENCE. 

I am pushing myself this week to pack up Foundation raffle items and get them mailed out or hand delivered tomorrow. I also sent our all gift cards to our top walkers and they were received today. So I am on a roll. I will still have more admin to do for the walk, but it will be more manageable and I can juggle it. 

This is our Walk thermometer today.... we have reached $44,000, of our $50,000 goal. Given the two years that I have been having, it is remarkable that I was able to pull this off. I am grateful to friends and supporters who donated and continue to stand behind the Foundation, which ultimately serves as Mattie's legacy!

Monday, May 19, 2025

Monday, May 19, 2025

Tonight's picture was taken in May of 2002. Mattie was a month old. Truthfully I had NO IDEA what I was doing! The What to Expect When You are Expecting book that guides moms through pregnancy was fantastic. But there really is no great companion book on parenting. It truly is learning minute by minute. Which is why I always say.... Mattie was my life's greatest teacher! But look at that sweet face!!! Mattie was hard to resist. Mattie did a lot of napping as a newborn, but pretty soon thereafter, napping was a challenge for him. Mattie was born with two modes.... ON and OFF! As if he knew he had only 7 years on this earth, and he wasn't going to sleep away any moment of it!

Quote of the day: You wake up every morning to fight the same demons that left you so tired the night before, and that, my love, is bravery. ~ Unknown

I had high hopes this morning that while my mom had a physical therapy session at home, that I could get some Walk admin accomplished! What a joke! Somehow, I can't focus on anything because I am constantly pulled in multiple directions. My mom can't manage her calendar to make additional therapy appointments and she really can't answer the therapist's questions about how her week is going. So I do not only need to be present for my dad, I must also be present for my mom!

At 1pm today, my parents had their annual eye exams. They have been seeing my eye doctor for four years now. Meaning the office, his staff, and the doctor should not be a surprise to either of them. But of course, for my dad, every moment is like a FIRST for him. Each year, he meets the doctor, as if it is the very first time he has met him. Since eye appointments require the administering of eye drops and an eye exam, my parents are placed in two different rooms. I always stay with my dad, and that wasn't a problem in the past! Today was an eye opener. 

While my dad's eyes were dilating, the doctor's nurse came in to get me. She let me know that my mom is very upset and needs my attention. She could not calm my mom down! So I told my dad, that I had to leave the room. I kept his door open, so I could keep an ear out for him. I knew my mom was the next patient to be seen, and my dad would be after my mom. Therefore I did not worry that my dad was going to be examined without my presence.

When I entered my mom's exam room, she was frantic. She appeared anxious, disoriented, and very upset. She made it clear that she did not want to be in that room by herself. She said drops were put in her eyes and then she was just left there. Meaning she has no understanding for timing anymore. As she thought she was sitting there for an hour! Not true! She then went on to say that her previous eye appointments weren't like this and of course...... it was better in California! 

I literally had to talk her off the edge, calm her down, and re-orient her to the reality of the situation. Needless to say, I did not leave the room, sat through her doctor's exam, and today we discovered her eye pressure is high. I have had this problem before too, but I have narrow angle glaucoma. She does not! However, the doctor tested the thickness of her cornea, and she has thick corneas. Apparently if your corneas are thick, you can subtract 3 points off of the pressure reading, thereby making her pressure reading normal. Nonetheless, the doctor wants to see her back in six months to recheck my mom. But he agrees with me, the fact that she got worked up emotionally impacted her eye pressure. GOSH IF THAT IS THE CASE, my eyes should be popping out of my head. 

What all of this confirmed for me today is that my mom is fragile. Her memory issues are impacting her ability to make sense out of the experiences around her, so she gets frightened, anxious, and it goes downhill from there. Typically I attend all medical appointments with my mom and my dad. If they are seeing the same doctor, then we are all in one exam room together. It is a bit different with an eye exam. Rest assured in the future, I will be jumping from exam room to exam room, to cut this issue off at the pass. 

Sunday, May 18, 2025

Sunday, May 18, 2025

Tonight's picture was taken in May of 2009. I captured this photo at the end of the Mattie March, on the school's track and field. Mattie was having a quiet moment with his good buddy, Zachary. Mattie and Zachary were inseparable friends in preschool. In fact, they were so inseparable that I felt like Zachary was like a member of our family! When Mattie was healthy and did not have cancer, Zachary and Mattie did a lot of physically active play. Yet once Mattie had his surgeries, that type of play ended immediately. Though Zachary was only six years old, he intuitively understood and adapted a new way of playing together. Truthfully I learned a ton about the beauty of friendship from watching these two children!

Quote of the day: Each friend represents a world in us, a world possibly not born until they arrive, and it is only by this meeting that a new world is born. ~  Anais Nin

This morning, I received a message from a dear friend, someone I have never met in person, yet over these last 16 years we have become close. She wrote.....

I am proud of the way you keep going regardless. Your dedication and perseverance and commitment to Mattie's legacy is beautiful and to be admired. What you are doing is scary and hard and lonely but you are doing this with grace and determination. You are a real life hero to so many of us!

This message meant a great deal to me, because Walk days are hard! Our Awareness Walk always transports me back in time to 2009, to the Mattie March, when Mattie was actually alive and we thought we were going to have many more years together. Therefore, to me, Walk day is always bittersweet. Now of course, being single, it is borderline horrific. 

I have been glued to a computer all day today, managing photos, communications, and the administration of the Walk. I just finished working for the day. When I tell you I sat for two long stints, around 5-6 hours at each sitting. In between, I was doing daily tasks like laundry, cooking, cleaning, and taking my parents out to a late lunch. 

What is very apparent is that Mattie Miracle has the best friends and supporters who walked with us today. I appreciated every photo and message that was sent to me. I also loved seeing our Mattie Miracle Walk t-shirts from past events. What this indicates to me is that supporters do NOT throw away our t-shirts, they mean something to them, and that says VOLUMES to me!

I snapped a photo of my dad this morning! He maybe 90, but he wanted to be involved!

Then I snapped a photo of my mom!

I want to introduce you to our TOP WALKERS! Each one will receive a VISA gift card!

Together they walked 174,957 steps for the Mattie Miracles! 

Top Adult Walkers:

1. Gustavo: 52,473
2. Leni: 44,034
3. Geannie: 21,854

Top Kid/Teen Walkers:

1. Daniel: 26,700
2. Jake: 16,087
3. Gavin: 13,760

We received many wonderful photos which I posted on Facebook, Twitter, Instagram, and LinkedIn. Soon I will begin working on an annual end of the year Mattie Miracle video and I hope to incorporate many of these photos to share with you at a later date.