Friday, December 15, 2023

Friday, December 15, 2023

Tonight's picture was taken in December of 2003. Mattie was a year and half old and that Christmas we took Mattie to Los Angeles to spend the holidays with my parents. We introduced Mattie to Travel Town in Griffith Park. It is a park filled with antique train cars, where kids can climb aboard and explore. This was right up Mattie's alley. Ironically I never visited Griffith Park when I lived in LA, it took Mattie's presence in my life to explore this amazing Park. Needless to say, every time we visited LA, Mattie requested a trip to Travel Town. 

Quote of the day: There is not a reason for everything. Not every loss can be transformed into something useful. Things happen that do not have a silver lining. ~ Megan Devine

When Mattie first died, I remember how I dreaded weekends. Weekends were once family time, where we would go out and explore the world as our sweet threesome. However, Mattie's death impacted what and how we re-entered the world. There were NO more playdates, there were NO more birthday parties, and NO more school events. We not only lost Mattie, we lost our way of life, and our social circle that made up that way of life. It was gutting and honestly I do not know how we survived that grueling torture. I may have moved forward, but I do not forget the pain, anguish, and isolation. 

Though my life looks differently now, there are many commonalities. The feeling of being different jumps back out at me. Being different and unique are not always great things. But what I know is in times of great stress and anxiety, nothing looks right in the world and I prefer to retreat and put barriers up between me and the rest of the world. Why? Most likely for many reasons. It feels safer to do this and on top of that because I feel so different from others, I do not care to hear about their lives, their conversation, nor do I want sympathy or another's insights. This is not typical behavior for me, but it is my form of survival and though it may look strange to those around me, it is what I need to do to make it through each day. 

Thursday, December 14, 2023

Thursday, December 14, 2023

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and spending Christmas with my parents in Los Angeles. My parents set up a room in the house for Mattie to play, to have all his toys, and videos. As you can see, back then my dad was alert and animated. He and Mattie were singing along to a video and naturally Mattie's sippy cup wasn't far away! That cup was connected to Mattie at all hours of the day and my joke was that Mattie consumed so much milk that we should have invested in a cow. 

Quote of the day: I could not count the times during the average day when something would come up that I needed to tell him. This impulse did not end with his death. What ended was the possibility of response. ~ Joann Didion

It was another crazy day on the farm. I did my usual routine of getting up early and managing my dad. At 10:30am, my dad's physical therapist came, and while she was working with him, I went grocery shopping. I have been able to secure a script for my dad to receive physical therapy at his memory care center. So now he will get PT four times a week. I know my dad isn't looking forward to this but I need him to be able to walk, climb steps, and sit and stand. There is nothing to hold my dad back physically other than his desire to be sedentary. I know I can't fight this battle alone, which is why I am grateful to have the support of wonderful physical therapists. 

In the early afternoon, I had a Foundation board meeting. I have to say I am not a big fan of ZOOM and on-line platforms, but it certainly streamlines the process when schedules are busy and we are all in different locations. I truly credit my years of experience working on the licensure board to my abilities now to create an agenda, lead a meeting, try to be open to all ideas, feedback, and input. I really miss my days on the licensure board, but those skills are never lost. Instead, they are applied to my Mattie Miracle role, which is other than raising Mattie, the most important job I have ever had! Thankfully I have an amazing board committed to our work and our success. 

After the call, I ran around doing chores and then took my parents out for a bit to eat. Once home, I helped my mom process bills and manage her accounts. All I know is over the course of the last couple of months, I have had to learn so many news things, and though I could puddle in the corner, I don't! I know people rely on me and there is no other greater motivator for me. If I know my presence is necessary in order to help someone, I will rise to the occasion every time. 

Wednesday, December 13, 2023

Wednesday, December 13, 2023

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and that Christmas we went to Los Angeles to spend the holidays with my parents. In my parent's backyard, they planted citrus trees. As you can see my little 'Farmer Brown' loved collecting oranges, lemons and grapefruits. Literally he could do this for hours. He would collect them, and then sort, stack and play with them. Who needs toys, when you have access to nature. 

Quote of the day: The people we most love do become a physical part of us, ingrained in our synapses, in the pathways where memories are created. ~ Meghan O’Rourke

Another day in paradise here. The question is what didn't I do today? I feel like I did every chore possible from laundry, cooking, cleaning, getting gas for the car, grocery shopping, picking up the car getting serviced, mailing things at the post office, taking my mom to tea, my dad to his foot doctor appointment and tonight I had a therapy session. 

Tonight was my fifth session with the therapist. I think last week she learned first hand that being prescriptive and directive with me doesn't work. It doesn't work especially when you aren't living my day to day existence. But the beauty of last week is we talked through our differences and this week, we picked up where we left off. 

By the end of the session, the therapist called me a "warrior." I am not sure any one has ever used that term with me. I certainly think Mattie was a cancer warrior, but when she reflected back on my life and what I am coping with now, she is right a warrior is more than appropriate. A warrior is not just a survivor, but when facing adversity, doesn't back away into a corner. Instead, charges in, is resourceful, and is committed to protecting those around them. So tonight as I write this blog, I have to say, I am proud to be called a warrior, as I am a fierce advocate and protector of those in my life. 

When I came home I was greeted with a box. Inside was a fresh rosemary plant, with Christmas lights, jingle bells and a beautiful reindeer ornament. This gift was sent to me by my friend's (Margy) sisters. Margy lost her battle to ovarian cancer in 2021. She was a fierce childhood cancer advocate and I am so honored to call her a friend. In her memory, Mattie Miracle runs our M&M (Margy & Mattie) Wishes Program, to provide grants to children with cancer for a fun activity or wish list item. 

When Margy died, I had the opportunity to meet her beautiful sisters. Her sisters know I am going through a hard time and that I had no intention of putting up a Christmas tree this year. Which is why receiving such a thoughtful gift has truly touched my heart. They wanted me to know I am loved and have their support. What I am finding one by one is that friends are reaching out to me daily because they are reminding me that I am always there for them, I always listen, and I freely give of myself. I think the best gift I could receive at Christmas, which is better than anything I could open, is to know that I am blessed to have an incredible network of women in my life. 

Tuesday, December 12, 2023

Tuesday, December 12, 2023 -- Mattie died 741 weeks ago today.

Tonight's picture was taken in December of 2003. That Christmas, we took Mattie to Los Angeles to spend the holidays with my parents. It was Mattie's first Christmas in LA and I knew my parents were excited. My mom put up a miniature tree for Mattie in the kitchen and he loved decorating and playing with it. Back then I really thought there would be MANY MANY more Christmases like this together. 

Quote of the day: When my dad died, I didn’t know where to put my grief. The first time I had a miscarriage was the same. I didn’t know how to fit what I was feeling with normal, everyday life. For me to go and write was like a way of shaping something so big that I would otherwise be overwhelmed. ~ Rachel Joyce

I got up at 5:30am today in order to get out of the house by 9:15am, to get one of our cars to the dealership for service. I had never been to this service center before so I really had no idea what to expect. But one thing is for certain, I have become even more assertive and as a result I can get a lot accomplished and done effectively. The car dealership tried very hard to accommodate me and even though they said they couldn't get me a loaner car the day before, today they magically made it happen. Which I appreciated. 

Though it was nice to get a loaner car, I was actually looking forward to sitting for a few hours with a book, my tea and some snacks. It was going to be my time without having to listen to any one, no caregiving demands, or tasks to do. It wasn't meant to be. Once I got the loaner, I went to the grocery store and then drove home to do more chores. 

Later today, I had an appointment at the bank. I have been getting the run around with trying to create a PIN for my ATM card. I couldn't accomplish this on-line or by phone. Though I tried to make a bank appointment on-line, all the appointment times were booked for a month! NOT acceptable. So yesterday I marched into the bank and said I needed appointment and I was not waiting a month. They accommodated me today and the banker I met with was a miracle worker. She was very customer focused, efficient, and kind. If we could only clone her! I view today as a day in which I was very productive. 

As I told the therapist last week, I celebrate the small stuff. I also told her my dad's analogy. When I was doing my dissertation, I felt overwhelmed, as that was a huge research endeavor. Back then my dad would say that if I wanted to consume an elephant, I wouldn't do it all at once. Instead, I would need to take little scoops each day. Of course none of us are going to eat an elephant, but you get the analogy. Sometimes looking at the big picture is NOT helpful. But when you take small steps toward the bigger picture, eventually you will reach your goal successfully. Needless to say, this is an analogy that has stuck with me over all these years. 

Monday, December 11, 2023

Monday, December 11, 2023

Tonight's picture was taken in December of 2003. This was Mattie's second airplane trip to Los Angeles. At a year and a half old, Mattie learned to become accustomed to traveling. Unlike me, he LOVED it. The turbulence did not bother Mattie in the least and just like on land.... there was no napping. So I had to come with a big bag of tricks to keep Mattie occupied and entertained. I recall back in the day that I actually shared toys and books with fellow parent passengers around me who were desperate to quiet down their children. 

Quote of the day: Grief is not a sign that you’re unwell or unevolved. It’s a sign that love has been part of your life, and that you want love to continue, even here. ~ Megan Devine

It was another full day on the Farm! After dropping my dad off at his memory care center, I came back home, did a few chores and then got my mom in the car. I drove to the city for her to have her hair and nails done. This salon is in the same neighborhood that I used to live in. It saddens me to see how the city I once loved has been taken over by graffiti, homeless encampments, and garbage. In fact it is almost unrecognizable. This is yet another example of another big change in my life, as I believe you can NEVER go home again. I learned that bitter lesson at a young age, when my dad's job moved us from New York to Los Angeles in the 1980s. Leaving the home I knew and loved at the age of 15 was far from easy. Yet as time moved along, what I quickly realized was I did not fit in anywhere. I did not view Los Angeles as my home and I was no longer a part of life in New York. Once again, I am faced with a similar feeling. In fact in many ways, I wish I never left the city or my townhome. Life was ironically simpler there and I was surrounded by a community of people who looked out for us for over two decades. 

While at the salon today, I had a chance to chat with my manicurist. I have known this woman since Mattie died in 2009. Prior to that, I rarely got my nails done. But I will never forget after Mattie died, I went to get my hair cut for the first time and I was thoroughly traumatized. The owners of the salon understood and wanted to do something nice for me, so they treated me to nail service. I was reluctant, but I did it. This is how I established the connection with my manicurist. We have been together since 2009, and we have shared the ups and downs of our lives together. In fact, I probably know more about her life than some of her family members. In many ways this woman and I are very much a like. We are devoted to our families, put them first, are loyal, fierce, and strong minded women. Which is why we appreciate each other and can understand where the other one is coming from. I always find it amazing who can rise to the occasion and help me, when I am at my lowest moments. 

Later today I went to Bank of America. This is where our Foundation has its account. I am trying to activate the PIN on my card. How difficult could that be? I assure you.... DIFFICULT! I have tried calling, I have even tried booking an appointment with a banker on-line! FORGET IT. I literally had to drive to the bank today to schedule a live appointment for tomorrow. Talk about a lack of customer service. We shall see what tomorrow holds, but what I know is it will be another EARLY start as I have to take the car in for service by 9:40am. That may not sound bad, but before I can do that, I have to feed the animals, give Sunny chemo, get myself showered and dressed, make breakfast, get my dad up, showered, dressed, and downstairs. Literally I am getting up at 5am, to make all of this happen. I look back at the days before I moved into this house and the notion of getting up at 5am, was totally out of the realm of possibility. Some life changes are not always for the better.

Sunday, December 10, 2023

Sunday, December 10, 2023

Tonight's picture was taken in November of 2001. I was four months pregnant with Mattie. I have no idea what on earth I was wearing, other than it was probably comfortable! Given that the baby was going to be coming in April of 2002, I was going through a major clean out process and was transforming our walk in closet to accommodate our new family. I remember that moment in time, as some people call it "nesting." There is a lot of truth to nesting, as I was very focused on cleaning and preparing! Our townhouse had the best walk-in closet and I know some neighbors actually used their walk-ins as an office space! But that closet was a God sent, as it enabled us to store so much of our family's things and once Mattie died, it became part of Mattie Miracle headquarters. 

Quote of the day: Anyone who has lost something they thought was theirs forever finally comes to realize that nothing really belongs to them. ~ Paulo Coelho

I spent a good portion of today organizing myself. I created a filing system to keep track of papers all around me, I did my usual chores, and worked on Foundation things. Somehow all while juggling my dad and his needs. Mid-day, I packed my parents up, got them in the car and we had brunch out. We only go out for a major meal now once a week. Though my dad misses going out three or four times a week, it is what we need to do for a little while until I get stabilization in our lives. Every Sunday, we go to the same place and have the same server. Cheryl has been a part of our lives since my parents moved here in 2021. We share our ups and downs together and I am very grateful to have her in our lives, as well as the manager at this restaurant. Amazing women, who value me as a person, and understand the multiple roles and stresses I juggle. 

It is going to be another full week of caregiving and balancing car service, Sunny appointments and the list goes on. Truly I can't look at the bigger picture in my life, because if I did I probably wouldn't get out of bed. Instead, I learned with Mattie's cancer journey to be present and to get through the moment. The discipline of living with childhood cancer and then Mattie's death have prepared me for life's uncertainties and new traumas. I am not saying I like any of them or they are easy. But what I do notice is I have instinctual coping skills that were learned in 2008 and 2009, and like a plane going into automatic pilot, under duress my learned coping skills automatically kick in. 

Saturday, December 9, 2023

Saturday, December 9, 2023

Tonight's picture was taken in December of 2004. Mattie was two and half years old. By that age, Mattie was very ON and full of life. Mattie was a busy fellow and rarely sat still. His mind was always going and his body followed suit. As you can see, he LOVED his vehicles! Mattie naturally gravitated to all things with wheels. I remember prior to having Mattie, I would lecture my human development students about nature versus nurture. I always was a strong proponent of nurture, but once I had Mattie, I realized nature plays a huge role in one's personality and interests. One of the many many things I learned from Mattie!

Quote of the day: People die all the time. Life is a lot more fragile than we think. So you should treat others in a way that leaves no regrets. Fairly, and if possible, sincerely. It’s too easy not to make the effort, then weep and wring your hands after the person dies. ~ Haruki Murakami

This morning, my dad had a physical therapy session. I had paused his therapy for a month because I have been distraught and overwhelmed. But I realize this was having negative consequences on my dad's strength and abilities. So I was thankful Laura came over today. She can see that my dad has regressed and gets winded with any kind of movement now. However, I know with her support, we can restabilize him again. 

While my dad was in his PT session, our neighbor came over for a visit. She has become like an aunt to me. She cares deeply and is very fond of me. When she was ill not long ago, I went grocery shopping for her and her husband and I also helped to clean up their yard. They haven't forgotten any of these gestures and in turn have adopted me as a person they feel close to in the neighborhood. I am honored to have a neighbor that genuinely cares, has good intentions, and wants to be a part of my life. 

Later in the day, I took my parents out for frozen yogurt. Something my dad loves! Then ran to the grocery store for fresh fish for dinner. Truly after running around all day, I really did not want to walk Sunny. But at 5pm, he looked at me with his big sad eyes, so I grabbed a flashlight and out we went! It was a great decision because it perked me up. 

When in the kitchen, I love seeing this particular counter! I happen to love this little nook and I typically decorate it according to the season!

Within the last three days, I have received some lovely messages either by email or actual cards. People who want me to know how special Mattie Miracle is to them and to the children we serve. Here are a few messages that mean a lot to me:

From a therapeutic clinic (in which we pay for a young fellow's therapy)..................

Dear Victoria, Thank you so much for your generosity for X. We really appreciate it. Thanks, BB (billing manager)

From two long time supporters...................

Dear Vicki, Congratulations for all of the love, caring, and for making such an unselfish contribution to so many human beings. All good wishes. Love, H

Merry Christmas Vicki! It gives me joy to help your amazing organization. The spirit of Mattie lives on in so many families. Best, K

Friday, December 8, 2023

Friday, December 8, 2023

Tonight's picture was taken in December of 2004. I absolutely love this photo! We received some Christmas packages in the mail, and we stored them under the staircase. However, boxes intrigued both Mattie and Patches. Patches was rubbing her head against the boxes and Mattie simply wanted to open the boxes. Both of them had to fight their instincts. But what I love about this photo was it showed the sweet bond between Mattie and Patches. Even at the age of two, Mattie was learning the responsible behavior of being a pet owner. Over time, Mattie understood that he had to pet Patches gently and not to run after her or pull her tail. In fact, when friends would come over who were not cat owners, Mattie would give them a tutorial on how to interact appropriately with a cat. It was adorable. 

Quote of the day: We find our humanity—our will to live and our ability to love—in our connections to one another. ~ Sheryl Sandberg

I truly believe that tonight's quote is spot on, and it is a philosophy on how I live my life. My instinct is always to help people, to provide the space and time so others feel heard, and no matter who you are, I believe it is important to treat people with kindness and understanding. Of course I am human, and if I am threatened or mistreated in some way by a person, I will become guarded and my natural instinct will take over to protect myself. 

I had a full morning of my usual routine, Foundation work, dealing with repair people, and phone calls. However, in the early afternoon, I took my mom to Starbucks. Our local store is like our Cheers. We know all the people who work behind the counter and they all say hello and try to be as helpful as possible. Today, they even gave me a friends discount. That may not have meant a lot to the person behind the counter, but to me, I thought that was the nicest gesture. Someone looking out for me and letting me know that my presence in their store is appreciated. Kindness goes a long long way with me. 

Two nights ago, I attended my fourth therapy session. I have to admit that my previous week's session set me off because the therapist put her lens on what I was telling her and downplayed what I was saying and feeling. What it showed me was she wasn't getting me, she wasn't seeing my point of view, and instead inserted her lens into my thoughts and feelings. Needless to say, I was hesitant to go back to this therapist and thought.... what's the point!? I have my hands full already, I don't need another stressful encounter in my life. In any case, on my way to therapy this week, I was chatting back and forth through my phone with my friend Mary Ann. She and I met each other in graduate school and we formed a bond over ethics class. We have been friends ever since. But it was something that Mary Ann said to me in a message that empowered me to speak up and be upfront with this therapist. 

Confronting someone and sharing my thoughts and feelings, enables me to see how they will respond. Will my concerns be taken seriously or will the person become defensive? The therapist heard how her behavior and comments affected me and she apologized. In fact, my honesty enabled us to work through the differences we had the week before and I found at the end of the session we both had a clearer and more effective communication style. Bottom line, honesty and communication are always the way to go to develop a meaningful and trusting relationship of any kind. Would I have confronted the therapist without Mary Ann's message? Most likely yes, but my friend's message empowered me to realize that if the therapist couldn't handle my confrontation, then what I would conclude is she isn't the right fit for me. 

Thursday, December 6, 2023

Thursday, December 7, 2023

Tonight's picture was taken in December of 2005. We went to Boston for Christmas to spend it with Peter's family. While there, it snowed! We took Mattie for a walk by the pond and that trip he got to play in the snow, sled, and even build a snowman. Mattie gravitated to the colors red and orange, which is therefore no surprise that these colors now represent Mattie's Foundation. 

Quote of the day: Here’s the thing: every loss is valid. And every loss is not the same. You can’t flatten the landscape of grief and say that everything is equal. It isn’t. ~ Megan Devine

It was another whirlwind of a day. It is 9:30pm, and I am still working on one thing or another. I took my dad to the doctor this morning, to check his A1C. It is my hope that we have his sugar under control and he doesn't need to be on diabetes meds. As every med he has tried so far has produced horrific side effects. 

After the appointment, I got my parents back in the car and then I took them out for soup. Once home, Sunny wanted attention, and after dealing with laundry and other chores, Sunny and I went for a walk. While walking, he finally had a bowel movement, and I was able to collect a specimen to bring back to the vet today. More running around. I came home and worked on bill paying and other issues, and then by 7pm, I scrambled to make dinner. 

Of course what I know is tomorrow and tomorrow and tomorrow, will be more of the same!

Wednesday, December 6, 2023

Wednesday, December 6, 2023

Tonight's picture was taken in November of 2003. Mattie was a year and a half old. We took Mattie to Boston for Thanksgiving and one of the gifts Peter's mom gave Mattie was this talking Elmo. Mattie was absolutely mesmerized by this toy! He wanted to understand how it could move and talk. Elmo was Mattie's all time favorite Sesame Street character and he loved this gift so much that he even brought it to his preschool for show and tell!

Quote of the day: We have trauma, and we have grief. People die, and we find it baffling. Painful. Inexplicable. Grief is baffling. There are theories on how we react to death, how we cope, how we handle loss. Some believe the range of emotions mourners experience is predictable, that grief can be monitored, as if mourners are following a checklist. But sorrow is less of a checklist, more like water. It's fluid, it has no set shape, never disappears, never ends. It doesn't go away. It just changes. It changes us. ~ Mira Ptacin

Yesterday when I got the mail out of our post box, I saw a Christmas card sitting there. At first I thought it was for us, as the house number was the same, but I noticed the street was different. It was also not addressed to us. So the postman delivered the card to the wrong address. Literally it was meant to go to a house about four blocks away. Truthfully given all that I am dealing with, my initial thought was... I am going to toss the card! Then I thought about it and decided instead to get in the car and personally deliver the card to its intended recipient. Why was I compelled to do this?

I chalk it up to watching the Hallmark series called Signed, Sealed, and Delivered. Before moving to our house in 2021, I used to watch the Hallmark channel religiously. I see and live with enough unhappy endings in my real life, which is why Hallmark resonates with me! There are only happy endings on Hallmark! Where people learn, grow, and love each other! If life was only like a Hallmark movie! In any case, this is the premise of Signed, Sealed, and Delivered.........

Signed, Sealed, Delivered is a wonderful combination of romance, comedy and drama that follows the lives of four postal detectives who transform themselves into a team of detectives to track down intended recipients of undeliverable mail. Their missions take them out of the office and into an unpredictable world where redirected letters and packages can save lives, solve crimes, reunite old loves and change futures by arriving late but somehow always on time.

When I picked up that Christmas card, what immediately came to mind is that perhaps there is an important message in this card! Perhaps someone is writing to support someone else and the words in this card could potentially transform someone's day! All these thoughts flooded my mind, which compelled me to get in the car and deliver the card! Who knows the nature of the card, but what I do know is WORDS can instill hope, make us feel comforted, and remind us WE ARE NOT ALONE. I am hoping this card provided all these things to the intended recipient!