Saturday, March 23, 2024

Saturday, March 23, 2024

Tonight's picture was taken in March of 2009. Mattie was in the physical therapy clinic of the hospital. That day his therapist created a wall of plastic blocks. She knew that this would inspire Mattie to try to knock it over, and she was correct. Mattie sat behind it and with his feet and legs he was encouraged to use his muscles to break down this wall. Mattie liked that challenge and of course gladly complied with success.

Quote of the day: Our animal friends teach us more than we could have expected …And love us more than we could have hoped …… That’s why we miss them more than we could have imagined. ~ unknown

This was Sunny during one of his physical therapy sessions, post knee surgery. You can see that Sunny's back right leg was shaved from surgery. Sunny's surgeries happened during COVID, so for over a year, I never met his therapist in person! We only communicated by telephone. Through her voice and how she talked about Sunny, I knew she was a kind and caring individual. But you can see in this photo that Sunny wasn't happy and looked anxious. You probably can also see that the therapist had a Ziploc full of treats to coax Sunny to participate! No matter the situation, Sunny was typically open to accepting a treat!

This morning, while getting ready, I was listening to a podcast. Within the episode, they were talking about happiness and how society and different religions define it. Along the way, the story of the Chinese Farmer was conveyed to the audience. You can click the orange link to read the story in case, like me, you never heard it! 

In essence in the story all sorts of things happen to this farmer. With each new event, his neighbor has commentary. Either like, wow you are lucky, or wow how sad this has happened to you. Each time the neighbor provides feedback, the Chinese farmer's answer is "Maybe so, Maybe not." Regardless of the outcome, whether it is positive or negative, the farmer answers with this indifference. So the question is, what is the moral to the Maybe so, Maybe not story?

Probably the simplest interpretation is things may not be what they appear to be! A good thing, can have negative consequences, and a bad thing, can eventually produce a positive change or outcome. Or in other words, every situation or interaction has both good and bad outcomes. So I guess if I had to give a quick example, one could say that buying our beautiful house was a good thing. Most of society would view this as a positive. But this one positive, lead to a cascade of negativity, from becoming a 24/7 caregiver to losing my husband. Could I have predicted all of this would happen? No! 

On the other hand, Mattie getting diagnosed with cancer and then dying, is the ultimate in bad things that could happen to a family. However, now 15 years later, one could potentially say that I have taken Mattie's suffering and death and used that knowledge to help countless other children with cancer and their families. Perhaps that is a positive. Yet regardless of the outcome, a negative, will always be a negative in my book. I may have tried to do something positive with it, but at the end of the day, the loss of Mattie can never go away, it can't be fixed, improved, or made better. 

Some people view this story as a message to live in the present, and to try not to attach judgment to any one thing or event. That is easy said than done. The one thing this story does for me is it reminds me that even in good times, something bad may be right around the corner. I have experienced and witnessed this all my adult life. Yet, when I heard the story this morning, my immediate reaction was wow..... yes I feel like my life has ended and my world has come to a complete catastrophic shut down. But I can not predict the future. Perhaps there will be a purpose and meaning for this level of emotional suffering. Maybe things can improve and heal in ways I can't possibly even imagine now. 

Friday, March 22, 2024

Friday, March 22, 2024

Tonight's picture was taken in March of 2009. Mattie was in the outpatient clinic and had worked on this abstract painting. Pictured with Mattie was one of his art therapists, Jessie. Believe it or not, this painting hangs above my desk in my office. To me it is a very happy composition created by an incredible fellow. Mattie loved art and creating, which was a complete God sent, because after Mattie's limb salvaging surgeries, his physical capabilities were limited. But Mattie had good fine motor skills and put them to good use throughout his cancer journey. 

Quote of the day: The journey of life is sweeter when traveled with a dog. ~ Bridget Willoughby

Sunny underwent two TPLO surgeries, one in 2020 and another in 2021. The human equivalent would by an ACL knee surgery. Sunny truly was a trooper. After his initial recovery, he then participated in physical therapy for several months. In one session he did water therapy! Not a favorite of Sunny's but his therapist was fantastic. She knew Sunny was motivated by food and despite not liking water, complied if a treat was involved! I will never forget that the therapist nicknamed Sunny, "the professor." She felt that when she was working with Sunny, he was studying and evaluating her! 

This afternoon, my mom and I met my friend, Kristy, for lunch. Kristy is the daughter of my friend, Margy who died in March of 2021. It is amazing, when I am talking sometimes with Kristy, I am reminded of Margy. The power of genes! I am experiencing so much turmoil in my life, that frankly my ability to socialize and interact with the world is practically non-existent. I can only allow a few people in. I can feel badly about this, I could try to evaluate whether this is okay or not, but at the end of the day, I need to do what works for me. 

While many people probably look forward to Friday, because it is followed by Saturday and Sunday, I dread it. I had this same feeling when Mattie died. There is no structure to the weekends. Not that the weekdays are great here either, but my dad has his memory program, we have therapists coming in and out, and other appointments which get us out of the house. The weekends are complicated and when it is cold and rainy, it is even worse. My mom insists that we go out every day. So this makes weekends challenging, because I am one person balancing both of their needs at one time. It can be exhausting and putting that aside, it is very, very hard doing the exact same thing day in and day out. I have done this same routine since December of 2021, without a break. It is a test of the human spirit and the fact that I haven't cracked up is remarkable. Each day I ask for strength and the ability to carry on.  

Thursday, March 21, 2024

Thursday, March 21, 2024

Tonight's picture was taken in March of 2009. I will never forget this day. We were all in attendance of the hospital's launch of the children's art gallery. Mattie worked on several creations for this event for months! So it was a big day for him. There was a ceremony, musician volunteers made the event festival, and there was a little party! The gallery has a long ramp that runs through it. Mattie and his buddy, Meg (a child life intern), were having fun zooming down the ramp. As you can see Mattie's nurse, Kathleen, was snapping photos! This whole space is really quite sacred to me. Whenever I visit the hospital, you can bet I always find my way to this gallery. 

Quote of the day: If a dog has brightened your life and every day silently accepted your tears without judgement snuggled with you forgiven your faults and loved you unconditionally, then you know what a gift dogs are to this world. ~  Anonymous

Sunny and me in his behavioral training class. I was a nervous wreck that day, because we were both being tested in order for Sunny to qualify for his Good Citizenship Certification. Of course Sunny passed with flying colors! He made me look good! That said, I still had pockets filled with treats as incentives!!!!

Today was quite the day. While my dad had his physical therapy session at home, I did grocery shopping. I literally flew through the store, as I don't like leaving my parents home for too long without my presence. When I got home, after dealing with groceries, I had two phone calls to make. One was down right hysterical. My dad get's a pension from a company he worked for in New York. I am trying to learn about all their assets and expenditures. I was particularly interested in whether his pension can have beneficiaries. What stuns me about my dad is he really did not think about any sort of insurances or support for my mom, if he should die. This is truly stunning since we always deemed him the king of insurance.

Any case, I was on the phone with the pension company and what an experience it was. The woman couldn't find my dad in her system. I gave her his social security number and birth date. She kept saying.... he isn't in the system. She then said in a condescending tone.... when you find his social security card, you will probably find that you are giving me the wrong number! WRONG, WRONG, and WRONG! I am sure the average person would have hung up as she worked hard at dismissing me. She basically said she couldn't help me and neither could her supervisor, who I insisted on talking to, but she wouldn't pass me along to him! If you are a loyal reader, then you know I don't give up easily. I literally gave it to this woman on the phone. So she then asked, whether I had a 1099 for his pension? I ran upstairs to my mom's filing cabinet and found it. Which she wasn't expecting. She had me read the social security number on the 1099. Naturally it was the same number I gave her earlier. So at that point, she actually had to connect me with her supervisor. THANK GOD! He was lovely!

The supervisor apologized for what I experienced. But here's the thing! The woman I was speaking to clearly had dyslexia, which her supervisor and I quickly determined. Let's say I said that my dad's last four digits of his social security number were 2626 (I am just giving you an example). When the supervisor read the number back to me that was recorded by the woman I had just spoken with,  she recorded it as 6262. No wonder she couldn't find my dad in her system. Which is why the supervisor apologized. Then he explained how RARE pensions are these days. So rare that his company only has a few people working in that division. Gone are the days when companies provided for their employees' retirement! A real sign of the times. Any case, thanks to the supervisor, I now have the direct number to the person who can answer my questions. 

That was only the first call. The second call was to a company that my dad purchased pre-arrangements for funerals back in 2009. I truly did not know he did this, but the company sent us some communication a few weeks ago. Turns out when my dad paid for cremations it was to a specific funeral home in California. Clearly, they aren't going back there. So now I have to look into trying to transfer the policy to a funeral home in Virginia. Fortunately my dad chose a funeral home in California that is part of nation wide chain. The insurance agent said that because I am trying to do an in-network transfer, that this should work out. Nonetheless, she coached me that some funeral homes will try to upsell me or write a new contract, to reflect the cost of cremations with 2024 prices. I can't get over that in 2009, my dad was able to buy a cremation for under $2,000. 

Any case, I have to await paperwork in the mail before I can pursue this transfer. If the transfer goes through, that means that a funeral home near me will perform a cremation for the price my dad paid for it in 2009. Frankly the whole thing is creepy and I do not like having to focus on this topic. Yet I also know my dad paid for a service and unless I manage this now, the money he spent on both policies will go out the window. Needless to say it was a sobering day. 

All these calls made my mom very anxious. As she was listening in and pacing. Once I was off the phone she wanted to go to Starbucks. I try not to take my dad there, because it is typically busy and not always easy to find a table and chairs. I sent my mom in to secure a table, and thankfully a gentleman was observing her and helped her get access to a table and chairs. Literally juggling them in Starbucks is not an easy feat. My dad needs a chair pad, my mom needs a blanket, and both need help sitting and getting closer to the table. Then of course I have to order and set up the food and drinks for them. I am very grateful that the Starbucks staff help me with the running around. Eating with my dad is an experience. I believe his eating style is influenced by dementia, because as soon as he sees food, he shovels it into his mouth. Whether it belongs to him or to someone else at the table. I literally have to move our food away from him, otherwise we would get nothing to eat. 

Though Starbucks is only five minutes away from our house, when I got him home, we did not make it inside fast enough. He had already pooped in his pants. Some days, all the stress I manage, I am ready to jump out of my skin. So after I got him settled, I went outside and picked up a bin full of branches and sticks. It is my therapy.   

Wednesday, March 20, 2024

Wednesday, March 20, 2024

Tonight's picture was taken on April 1, 2009. Mattie's support team celebrated his birthday early! Mattie received balloons and gifts throughout that birthday week. In fact, that year, Mattie had two 7th birthday parties. One in the hospital, on his actual birthday, and a second at my friend Christine's house. These events were celebrations that I will never forget. That day, Mattie's school counselor brought him this wonderful singing hamster card! When Mattie opened it up it played a cute song. The song brought all of us a moment of happiness, because it made Mattie dance around in his wheelchair and smile! 

Quote of the day: If you think dogs can’t count, try putting three dog biscuits in your pocket and then give him only two of them. ~ Phil Pastoret

When Sunny was younger and able to climb steps and jump up on the bed, this was NOT an unusual occurrence. He loved hugs and snuggles. In fact, every morning started with Sunny jumping on our bed. He was better than an alarm clock!

Every Wednesday evening, I have a therapy appointment. I started going in December, when my life had fallen apart. There are moments when I ask... why am I going? What on earth is she going to do for me? Mainly because no one can change my circumstances. In fact, each week, I think.... perhaps I can just save my money and not go. However, what therapy enables me to do is get out of the house once a week, drive on my own without entertaining anyone, and then for 50 minutes I can talk to someone who is cognitively intact and better yet, I do not have to worry about hurting her feelings. I can't tell you what a blessing that is! Because overall, I have absorbed a lot of emotions over the last two years. 

Each week, the therapist appears to be more in awe about the multiple tasks and issues I am facing head on. Things I haven't been responsible for during most of my adult life. Yet here I am..... having to rise to the challenge. She calls me a warrior woman. I am not sure what kind of warrior I am. I think I am just a person who is loyal, loves deeply, values my commitments, and will do just about anything to help and protect those I love. Perhaps to a fault. In any case, it is interesting to see your life through someone else's lens.

One of the things I am facing is the notion that society may view me as worthless. Worthless because I have worked hard since Mattie died to build his Foundation, but I have done this for 15 years for FREE. I haven't earned a penny. Yet our society views success and achievement typically by how much you earn and what benefits you have received! Using this benchmark, I am a big zero. Naturally, I understand my value. I understand the blood, sweat, and tears I put into Mattie's Foundation, and my efforts have helped to create a well respected and successful organization. Yet what do I have to personally show for this at the end of the day? These are questions I have now been forced to ask myself. I face these hard questions and other challenging emotions each week and for now, I am not ready to do the feeling work. I neither have the emotional energy for it and also see NO purpose to crying and shutting down. I don't have that luxury, because if I shut down, my entire house won't operate. LITERALLY! 

When I got back home from therapy, the first one to greet me is Miss Indie. Indie has truly stepped up her act since Sunny died. I can't quite explain this, but she is far more demanding, follows me all over the house, and at night when we are all watching TV, she sits right next to me looking for attention and love. She is channeling her inner Sunny!

Tuesday, March 19, 2024

Tuesday, March 19, 2024 -- Mattie died 755 weeks ago today.

Tonight's picture was taken in March of 2009. Though Mattie's hospital room was extremely small, I was always amazed at how many people we typically had in the room at one time. Sitting with Mattie were Whitney and Lesley, child life interns. The cute fellow peeking out the doorway was Brandon, Mattie's buddy in cancer. Mattie and Brandon were diagnosed with cancer around the same time. By this point, Brandon was off treatment, but he still came to the hospital on a regular basis to visit with Mattie. Brandon lived an hour away from the hospital, so his visits were a real commitment. I will never forget these special people who were so generous with their time, support, and friendship. They made a difference in our daily existence. 

Quote of the day: The one best place to bury a good dog is in the heart of his master. ~  Ben Hur Lampman

The beauty of Sunny in our backyard! Now when I look out the window, I do not see my tan and white boy. However, I can picture him in my mind's eye, because he loved each and every minute outside. I will never forget when we moved here from the city and introduced Sunny to his own enclosed space. It was like a kid at the candy store. He ran around looking and examining every tree, bush, and did loops around the property line!

Around noon I took my parents to CVS to get their COVID boosters. I am in this pharmacy so often that the staff and pharmacists have gotten to know us. This same particular pharmacist has worked with us on boosters and the flu shot before. I tried to pre-register my parents and even got them to wear clothes that made it easy to access their arms for a shot. Any time I have both of them in tow, it is a concerted effort and it requires a lot of forethought to make things run smoothly. I am not sure they are aware of all I do, but I understand the importance. 

Once we were done with shots, my mom wanted to go to Starbuck's. I typically do not take my dad there because the last time we went he did not like what I got him to drink and eat. Before getting out of the car, I had my mom go inside to make sure she could secure a table with chairs. If she couldn't, then I wasn't going to get my dad out of the car. She found a spot, so we all went in. Of course, it is hysterical. As soon as I walk in the door, people say..... Hello Victoria. I reminds me of the classic TV Show, Cheers! Since the staff know me, it tells you how often I go to Starbuck's. Starbuck's truthfully is better than going to therapy. I am not sure why. I think it is the fact that there is activity, the store has a real community feel, and typically when I go there, I try to take a mental reprieve from my existence. Today the staff could see that I was balancing both of my parents, so literally they were bringing stuff back and forth to the table for me. What wonderful people!

Today I was recalling to my mom my very first therapy client in graduate school. This was a bright young man who worked for a well known think tank in Washington, DC. Yet despite all he had going for him, he had clinical depression. He evaluated his life through the window of a Starbuck's store. Literally! He would recount that on his way to work, he would look in the window and see people having coffee, chatting, connecting, and seeming to be living and interacting with the world. He wanted to know why he wasn't one of those people! In fact, if he was one of those people, then he felt that meant he wasn't depressed. 

Though I was only twenty something at the time, I had enough of a where with all to encourage him to question his theory. Because someone was inside a Starbuck's did not mean they were happy, had a good social life, and weren't depressed. In fact, I remember telling him that some people maybe in the store looking out, seeing you walking by, looking professional and asking themselves.... why can't I be more like him? He truthfully did not know how to respond to me. 

I recall this conversation so vividly, because now that I am in a Starbuck's looking out or looking all around me, it is so easy to do what my client did! Evaluate everyone else as more stable and happier than me. When I find myself doing this, I remember the dialogue I had many, many years ago with my client. I may have helped him in the long run, but ironically now many years later, he is now the one helping me. 

Monday, March 18, 2024

Monday, March 18, 2024

Tonight's picture was taken in March of 2009. I will never forget this day. Mattie had a bone scan at the hospital. His scans were always lengthy in time. Try two hours or more. In order to do this test, Mattie could not eat anything from midnight on. In order to make it through the scan, we had to provide him with incentives. As soon as most of the scan was done, the tech allowed Mattie to eat his frosted donut (one of his favorite treats while on chemotherapy!). This particular scan took forever because the tech was seeing all sorts of things lighting up on the screen! Which could indicate disease progression. The tech and radiologist were in constant communication and finally the radiologist had to call Mattie's surgeon to discuss what he was seeing. I honestly did not think I was going to make it that day. However, what they concluded was the scan was picking up on all the metals in Mattie's prosthetics. Until I heard that conclusion, my heart was ready to jump out of my chest from stress and anxiety. 

Quote of the day: The dog is the most faithful of animals and would be much esteemed were it not so common. Our Lord God has made His greatest gifts the commonest. ~ Martin Luther

This photo was taken on the first day we brought Sunny to our home. We decided to take him for a walk. As you can see, Sunny wasn't exactly a happy camper. Who could have blamed him as he had gone through a lot in a matter of weeks, from being transported from South Carolina, then being fostered by another family, and then finally adopted by us. Also note that when we adopted Sunny, he was heartworm positive, which meant I had to take him for two toxic infusions, and there was a big recovery time. All I can say is that Sunny and I went through a lot together, and it was worth every minute!

Today I drove to the city, as my mom and I both had hair appointments. I literally only cut my hair twice a year. Frankly I am in such a state now, that I don't have the patience to be dealing with my hair. I have been going to the same hairstylist since I was in my twenties. In a way, I feel like I have grown up with her. I know her family and she knows about my life. I am so stressed out and anxious these days that sitting still for two hours was very difficult. Truthfully at one point, I could feel a panic attack coming over me. But I managed through it. 

One of the topics we discussed today in the salon was caregiving. This is something my hairdresser knows all too well. We both know about supporting children with special needs and older adults. All I can say is caregiving is not for the meek. It has been another challenging day for me emotionally and I would like to have one day where I am not facing extreme stress, anxiety, and anger. Such a day would be a gift, but I am afraid my future is just more of the same. With no real joy, happiness, stability, or love. 

Sunday, March 17, 2024

Sunday, March 17, 2024

Tonight's picture was taken in March of 2009. On St. Patrick's Day to be specific! That day we were headed to the outpatient clinic, for Mattie to receive his weekly infusion of an experimental treatment. He was decked out in all his shamrock gear that he received from Team Mattie. What will always amaze me about Mattie was despite all that he was dealing with and how badly he felt, he never refused to see his friends at the hospital (child life specialist, art therapist, interns, and physical therapist). These women made the impossible more manageable and gave us the opportunity for Mattie to be a child, NOT just a child with cancer.

Quote of the day: With no concept of beginnings or endings, dogs probably don’t know that for people having a dog as a life companion provides a streak of light between two eternities of darkness. ~ Stanley Coren

I have to admit that I am not an adventurous walker, especially in the woods. I can get lost very easily and therefore unless I have a companion, I usually stick to the pavement. However, in our neighborhood, there are trails that are close to the houses, so when I get confused in the woods, I literally walk through someone's yard and get back to pavement. Trust me I have done it several times already!

When I walked with Sunny, I felt more confident. He was my constant companion and I knew if anyone tried something with me, he would bark and go hysterical. I can't tell you how many woods walks we did together! I miss my buddy. Going on these trails no longer interest me. 

This week I received a lovely email from a fellow bereaved mom who lost her daughter in 2009, the same year as Mattie, to bone cancer. Though we are across the country from each other, I am honored that she still checks into the blog. 

She wrote to comment on something I wrote recently. Specifically with regards to an acquaintance of mine who told me that I need to leave the house, live my life, and find my own way in the world. Truthfully, that comment will stay with me forever, and I hate to admit it, but it clouds my judgment on this acquaintance. Directives and platitudes don't and have never worked with me. 

My commentary inspired this fellow mom to write to me. Mainly because she RELATED and CONCURRED with my sentiments. She reflected on the time she was in the hospital caring around the clock for her daughter. Her daughter's hospital had signs around the unit that reflected the image you see here.... Apply your own oxygen mask first. We understand the nature of this comment, especially in an airplane/crisis situation. But this philosophy doesn't work in a hospital setting. I would go onto say that the philosophy doesn't even work when caregiving for a family member. The only thing such a platitude results in is anger, disillusionment, and severs the possibility of connecting with the person or institution delivering the message. 

I sometimes wonder when I receive such messages whether the person delivering them thinks I am stupid or out of touch with reality? Do people think I lack the insight that I need help, support, and rest? While Mattie was battling cancer, I was well aware of my frailties and vulnerabilities, AS I AM NOW. Having insight, perspective, and introspection are not things I am short on. However, there are times in one's life when we are aware of what needs to be done. We take on such huge responsibilities for different reasons, but instead of getting lectures, the most effective way to assist someone in my position is to be there emotionally for me. 

I love when my therapist asks me.... what would you tell a client who is in your position? Basically how would I help them? This is a hard question to answer because I am not just dealing with caregiving issues. If I only had one crisis to manage, WOW life would be a lot easier. But I am juggling several all at the same time, and one decision can impact the others. So as I tell the therapist, I would be outright clear with my client..... I have NO solutions! There are NO quick fixes. But what I can do is support you during every step of the process and ensure that you do not feel alone. I am not sure the therapist likes that answer, and what this tells me is.... she has never been a full time caregiver of an aging family member. Or any family member with a significant issue or illness for that matter. 

But here's the interesting thing. This fellow bereaved mom, who I have never met in person, a mom I don't connect with all the time, can read my words, and instantly relate, understand what I am expressing, and take the time to write and say.... She get's it! To me this is a gift, to be understood through the power of my words and feelings.