Saturday, May 4, 2024

Saturday, May 4, 2024

Tonight's picture was taken in May of 2007. Mattie was five years old and we were having lunch outside on our deck. It was a small space, but as I always used to say.... it was my secret garden. I was on this deck during all seasons with Mattie. What I love about this photo is the simple fact that you can see we looked exactly alike! Not only did we look alike, but we had a very similar personality and way of looking at the world. How I wish Mattie were alive now, his presence would make my current existence and future far more manageable. 

Quote of the day: You don’t love someone for their looks, or their clothes, or for their fancy car, but because they sing a song only you can hear. ~ Oscar Wilde

My friend in California wrote to me this week as soon as I posted on the blog about my sump pump. She encouraged me to stay on top of it! Phyllis was 100% correct! The alarm on the Aquanot Spin Battery Backup Sump Pump System went off at 8:30am. It went off and there is NO way I can stop it. Even unplugging it from the wall did nothing. It just kept on blaring. I now have it on silence, so I don't lose my mind from the sound. In any case, I sent my plumber a text message and he is coming over on Tuesday morning to address this issue. Mind you we put this system in the house in 2021. It is supposed to have a 7-10 year lifespan! But of course not.... NOT for me! I am hoping that it is under warranty, because the hits just keep on coming. 

I think home ownership is for some people. For me it has been one nightmare after the other, after the other. Perhaps if you are sharing the burden with someone, it isn't so bad, but for me, I am managing everything. On top of intense caregiving. 

I wake up each morning and I say to myself.... perhaps today will be a better day! Perhaps I won't get inundated with surprises, crises, or you name it! I haven't had such a day like this in a long time. It is painful and stressful to live under this much angst, and yet I do! When the linen closet door ball catch came flying out of the closet door this morning, I was just about to loose it! Needless to say, I got up on a ladder, diagnosed the problem, ordered the part, and will see if I can fix it on my own. Truthfully by the time I am done, I may just become a jack of all trades. 

My dad's physical therapist came for a session today. While she was working with him, I got several chores done, and began the Foundation's May newsletter. Amazing how productive I could be with an hour. This afternoon, I took my parents out to Starbucks. Truthfully this is about as much as my mind, heart, and spirit can handle. I know most of the people who work at our local store. They are lovely individuals. So much so that when I ordered today, the woman behind the counter said.... Victoria, you have your dad with you, don't forget to order his iced tea! I am thankful for the help and support. Because I am at Starbucks many days during the week, I have gotten to know all the regulars. There is an older woman who is there as often as we are. She is always alone. If I wasn't juggling a circus show, I would have her join us. When I look at her, all I can think of  is.... THERE WILL BE ME! I will be just like her, alone, and journeying to Starbucks for my weekly outings. Watching her is very humbling to me, and most likely a year ago, I wouldn't have the same perspective as I do now. But now I look at her and wonder.... why is she alone? What is her story? What I do admire however, is her ability to go out, to want to engage with the world, and be a vibrant part of our society. 

Friday, May 3, 2024

Friday, May 3, 2024

Tonight's picture was taken in May of 2006. Mattie was four years old and what I love about this photo was it illustrates the beauty of Mattie. Mattie was a busy and active fellow. He loved being creative and pairing that with being outside. That day, Mattie got out his fishing rod and was pretending that his sandbox was a boat. Instead of catching fish, he was catching toys! I can't tell you how many hours we spent on our deck. It wasn't a large space, but we used every inch of it! I miss the many adventures of life with Mattie. 

Quote of the day: The best love is the kind that awakens the soul and makes us reach for more, that plants a fire in our hearts and brings peace to our minds. ~ Nicholas Sparks

If I shared what my days look like, you wouldn't believe it. From the moment I awake, I am dealing with one chore or problem after the other. After I dropped my dad off at the memory care center, I went grocery shopping. Truly that was the only time I had peace today. As soon as I got home, the tasks began. I have been helping my mom with insurance paperwork all morning. Since this is not stuff I have done before, everything is a steep learning curve for me. If it was only one or two things I had to figure it, NO problem. But for me, its every aspect of my life! EVERYTHING. I could cower in the corner, and probably would if my parents did not depend upon me.

Later in the day, when I picked up the mail, I was bombarded with more tasks. Starting with data breaches to correspondence from my own health insurer. My doctor has prescribed THREE MRIs for me. I booked them for May 22. The hospital has told me to be prepared to be in the machine for three hours. Delightful no?! Any case, my doctor thought the insurer would flag the breast MRI, but it turns out they approved it based on my history, but they want more information as to why I need a brain and neck MRI. Ironically I have symptoms to merit such testing, so I can't imagine what other kind of data that need. Any case, I scanned the letter and sent it to my doctor. Now the miracle will be to get this resolved before the test on May 22. 

This evening, I had a call with an accounting professional. She is going to be helping me with my parent's taxes. I can't tell you how unstable their CPA is in Los Angeles. I had just about enough of him and can't wait to give him his walking papers. I maybe a woman with a doctorate, someone who is a licensed professional, with various accomplishments, but at the end of the day, I lived a very 1950s kind of life. In the sense that in my marriage, I had the more traditional woman role and did not take much interest in finances, technology, or managing all the complexities of operating a house. Within the last seven months, I learned to either sink or swim. Again, if it were just me, I most likely would have floundered and lost a will to live. Caregiving for my parents, though labor intensive, gives me a purpose, because I know I am needed by other people. If they weren't with me, then as my therapist knows, we would be having a much more difficult conversation. 

But tonight's phone call was revealing because this professional views me as remarkable. I do not know how remarkable I am, but I do know that what I face day in and day, it heartbreaking, filled with confusion, leaving me with too many unanswered questions, and I range from very angry to quite depressed. I can't believe it is Friday. It is my least favorite part of the week.... the weekend. I dread Saturday and Sunday once again, just like I did after Mattie died. Weekends provide less structure, in which I have both of my parents 24/7. 

Thursday, May 2, 2024

Thursday, May 2, 2024

Tonight's picture was taken in May  of 2007. Mattie was five years old. One of his friends from preschool gave him this superman outfit for his birthday. As you can see Mattie loved it and that was how I nicknamed him... Super Mattie. When we lived in Washington, DC, our townhouse did not have a washer and dryer in it. Instead, we had to take laundry three levels down. I really do not know how I survived that process for so many years, especially when I had Mattie. When he was a baby, I was constantly doing laundry and I of course couldn't leave him home by himself. So doing the laundry became an adventure. Super Mattie was either in the laundry cart or as he got older, he would ride his bicycle through the hallways to the laundry room. 

Quote of the day: You know someone is very special to you when days just don't seem right without them. ~ John Cena

It was another crazy day for me. Our pool got opened for the season this morning. In the state that I am in, I contemplated not opening the pool, but this wouldn't be good for the health of the pool. Two people came to remove the pool cover, and unfortunately given my caregiving routine in the morning, I couldn't go out and supervise them. I figured they knew what they were doing. Yet before loading my parents in the car to head to their cardiology appointments, something inside me said.... go see what they did! 

We have a special plastic bin to store the pool cover when it isn't in use. The team did not place the cover in the bin, but instead threw it into our shed. This cover is enormous and practically took up the entire shed. In addition, I have found debris all over the place and landed up cleaning it up as well as removing all the leaves they dumped from the pool onto the grass. 

Needless to say, before I left for the hospital, I sent the company a nasty gram. I wanted all of this corrected today. But the state of the shed bothered me. The whole thing is disorganized and filled with leaves and dirt. So later today, I went at it with one of our large garbage bins. I will be working on this space for the next several weeks. 

After my email tirade to the pool company, I got my parents into the car and I literally drove about ten minutes from the house.... when I realized, I FORGOT MY PURSE. I literally was cursing my head off, and I DON'T typically curse! This is how frazzled I am. Juggling both of my parents is a feat, and I am so busy managing their needs, that I left my purse in the kitchen. My mom said to me.... you don't need your purse, just keep driving! REALLY???? My purse has my wallet, my driver's license, and phone. Needless to say, I turned the car around and drove home. 

I finally got my parents to the cardiology office. The cardiologist is stellar. Competent and very personable. He spent an hour with both of my parents. They got EKGs and a thorough exam. The doctor feels they are both doing well. Which I translate to mean, Vicki gets an A+.

After their appointment, I drove to the Foundation's mailbox. I do not get to this mailbox as often as I would like, given how far it is from our home. However, when I take my parents to the hospital or doctor appointments, I make sure to visit the box. 

Right next to the Foundation's post office is a restaurant that I love. I rarely go to it anymore because parking is challenging and I can't drop my parents off without me, as my mom can not manage my dad alone. 

It was such a beautiful weather day, and when my mom saw the outside patio of the restaurant she requested that we go! This restaurant holds many fond memories for me. Prior to my parents moving in, I would meet friends there for lunch. In addition, when we used to host live Awareness Walks, we always took friends and family visiting us from out of town to this restaurant. So in a way, eating there today was bittersweet. It was a reminder of how different my life is now. NOT for the better.

That said, my parents enjoyed the change of pace, eating outside, and the liveliness on the restaurant's location. This is the beauty of being closer to the city, things are more vibrant. 

My mom and I shared this for dessert! It was a bread pudding.

When I got home later this afternoon, I decided to see if the pool cover was placed in its bin. It was, but then I decided to do about three hours of work outside. I started cleaning out the shed and then planted all of the flowers I purchased yesterday. With the intense heat, I could see they were beginning to wilt, so I spent the time planting and then watering everything. Needless to say, I came back in the house after 8pm and was a thorough mess. 

Wednesday, May 1, 2024

Wednesday, May 1, 2024

Tonight's picture was taken in April of 2007. Mattie was five years old and this was not an unusual occurrence in our home! Mattie was always a busy fellow. Our townhouse had a huge picture window in our living room. All surfaces were used for creativity, and I was always grateful for these amazing windows, which brought light into our home regardless of the season. Do note that Mattie was wearing a Christmas sweater in April! His choice of course and I went with it!

Quote of the day: The greatest tragedy of life is not that we die, but what dies inside us while we live. ~ Norman Cousins

Tonight's quote is brilliant. We can be breathing, moving about, and functioning in life, however, that doesn't always reflect how we are doing emotionally. Many things have died inside of me. As I told my therapist tonight, I lost my past (Mattie's death), I lost my present (with non-stop caregiving), and now I lost the possibility of a future I had planned. It is a whole lot of loss and trauma.

Given my heartbroken state, I have been going through many photos and videos. I came across this priceless photo of Sunny. Sunny was deathly afraid of thunder. That particular day, he escaped to the bedroom closet, walked onto a shelf and was hiding out. Along with hiding, would come intense panting from fear. I miss my buddy and our special connection. 

Today was another red letter day. I went to drop my dad off at his memory care center and then before returning home I stopped off at the garden center. I bought my third round of plants. I have been doing this in stages, otherwise it is impossible to carry and plant everything at once. When I returned home, my mom was having her physical therapy session and all I could hear was an alarm going off. No one seemed bothered by this noise other than me. I went from room to room in the house to figure out where this sound was coming from. It was coming from the basement, and specifically from the sump pump. Truthfully I had no idea what to do. But given that I have to be the jack of all trades and have to solve and address every problem alone, that is exactly what I did. 

I unplugged the pump from the socket and then the wall. That did nothing. Then I saw a test button. I pressed it. It ran a test throughout the pump, I could hear water move through the system and then magically the whole thing reset itself! I checked on it later today and it is doing fine. That problem solved. 

Then later in the afternoon, I came home and found that our door into the kitchen was having lock issues. There is an electronic lock on the door and it was acting up. I don't need much at this point to set me off. This was the last straw today. When I am overwhelmed, I become anxious, hyper focused, and then hysterical. I live in constant fear that things around me will fall apart, something will go wrong, and I will have to juggle this and EVERYTHING on my own. Trust me, even when everything in the house is working well, my daily routine is a nightmare. Not to mention what is going on in my life... which is truly over the top. Which is why, when faced with having to take on new and challenging tasks, I freak out. 

This heightened alert state is grueling and wearing. I get no breaks or peace, and I do not live with anyone who listens to my woes, my feelings, or is there in any capacity to assist me even for a moment during the day. My therapist thinks I am remarkable on many levels, because she feels the average wife would have lost it by now and lashed out at the world. All I know is I take it one day at a time, because if I look at the bigger picture, I wouldn't be able to function. 

Tuesday, April 30, 2024

Tuesday, April 30, 2024 -- Mattie died  761 weeks ago today.

Tonight's picture was taken in April of 2007. That weekend we took Mattie to Luray Caverns. It was a special trip. Mattie was up for the adventure. Of course as soon as we got into the caves, Mattie was scared. He did not want to leave, but he insisted on one of us carrying him the entire time we were underground. Nonetheless, he loved it, and in turn, so did I. 

Quote of the day: Love is like a puzzle. When you’re in love, all the pieces fit but when your heart gets broken, it takes a while to get everything back together. ~ Unknown

Today was another blur of a day! I spent the morning on the phone. Over the weekend, I had to contact one of the domain providers of the Foundation's website. I updated our service and added other features. However, I was having trouble getting things to operate. So despite chatting with on-line help, which was useless, I decided to call back today to talk to a live human being. I was on the phone an hour. Turns out the products SOLD to me this weekend, were NOT appropriate for our website. What an ordeal! So the Foundation is getting reimbursed and the tech helped me remotely correct all issues. Thank goodness I had the where with all to call, to keep asking questions and to get things resolved. I am very grateful to Dean. He knew his products and he was super helpful. Given that I am a one woman army now, I am grateful for anyone and everyone who assists me.

I spent another portion of the day cleaning out all of the pollen on our porch. It was absolutely intense. This is my second time doing this, but when I can see layers of yellow, I know I have to go at it! I then took my parents out for frozen yogurt. I did not sit for five minutes, until my dad had to rush to the bathroom. Truthfully his IBS is a total killer. I am beginning to see a connection. My dad stopped his statin for cholesterol because he was developing terrible rashes, which caused intense scratching. Scratching until he bleed and had open sores! The doctor has taken my dad off of all statins and what I notice is this impacts his IBS. It is worse, if that is at all possible. Truthfully I fix one thing, and ten other things pop up. 

Once home, I was took anxious to be inside. So I got out the greens trash bin, and started weeding and picking up sticks. I was at it for over an hour. Being outside is my only refuge! 

I came across these two videos that Peter took in June of 2021. We had just purchased our new house and introduced Sunny to the house and then the backyard. These videos highlight a better time in my life and therefore, I wanted to post them to tonight's blog. 

 

Sunny introduced to the inside of the house..........................

Sunny explored his backyard in excitement. He went from living in a townhouse in the city, to country living. I will never forget how my boy loved this new home and took to having his own backyard like a duck to water. 

Monday, April 29, 2024

Monday, April 29, 2024

Tonight's picture was taken in April of 2007. I will never forget this day! It was National Kite Day on the Mall in Washington, DC. My parents were visiting and we all walked down to the Mall. As you can see the cherry trees were in full bloom and we paused for a photo in front of them. It was my first and last attendance of Kite Day. 

Quote of the day: No matter where you go, you will always be in my heart. ~ Anthony Hincks

It was another busy day for me. What didn't I do? When I got home later today, I found a box waiting for me by my doorstep. I wasn't expecting anything. 

This touching gift and card were sent to me by Mattie's nurse, Tricia. Tricia was Mattie's favorite nurse. Honestly Tricia helped us through every possible trauma while living in the hospital. 

Three stories on Tricia. The first, soon after Mattie was diagnosed, he was angry and lashed out at me constantly. One particular day, Tricia entered Mattie's hospital room, and Mattie was having a full blown tantrum. He cornered me against a wall and was screaming and hitting me. Tricia could have turned around and walked out, to leave me to deal with this! After all she just met us that week and owed us nothing. But she didn't walk away. Instead, she calmed us both down, escorted us to Mattie's bed, told us we need to rest. Literally she tucked us in bed together and this helped to reset the tirade! Amazing no? That was my first introduction to Tricia. Not only an extraordinary nurse, but a very compassionate, insightful, and beautiful person. 

The second story involves one of Mattie's PICU nurses. This nurse barred me from going into Mattie's room. This nurse proceeded to tell Mattie's oncologist that I was the reason he was seeking pain medication and also acting out. She felt separating him from me, that Mattie would do better. Literally I was hysterical, as Mattie was crying for me from inside his hospital room. This is when Tricia stepped in, as she witnessed this occurring in the hallway. She put this nurse and this doctor in their places one, two, three. She explained that she had cared for Mattie for months and the person who keeps him stable and secure was ME. Needless to say, I was allowed right back into the room. Again, Tricia could have walked passed this disagreement in the hallway, but she didn't! She stepped in, advocated for me, and made sure Mattie had exactly what he needed to manage the unimaginable. 

The third story (out of SO SO many), was when Mattie was walking around in the PICU hallways. He spotted Tricia, and literally screamed.... TRICIA, from across the hallway. Tricia came running over because she thought something was wrong with Mattie. When she asked him what was wrong, his response was.... I wanted you to come over to tell you I LOVE YOU! It was a priceless moment, and like me, Mattie did not give his love away easily. 

My point to all of this is Tricia is an incredibly special and important person in my life. She has been by my side through all sorts of medical traumas and Mattie's death. We remain close and when she reached out today, it was like being scooped up in a big hug of love. As I trust her implicitly with Mattie's life and my own. She is one of the gifts Mattie left behind for me and I am grateful for her love and support. 

Sunday, April 28, 2024

 Sunday, April 28, 2024

Tonight's picture was taken in April of 2006. Mattie was four years old. Mattie absolutely loved being outdoor, his frog sandbox, and exploring nature. I can't tell you how many hours we spent on the deck of our townhouse, in our commons area, and walking nature trails. These are moments I will never forget. 

Quote of the Day: Never allow someone to be your priority while allowing yourself to be their option. ~ Mark Twain

It is funny how the mind works. Somehow the story of Alice the Ghost came to me last night. This is a legend or tale that I learned about while going to Union College in Schenectady, NY. I included the link to the story here. Basically Alice was a teenager, in love with a prospective suitor, who her dad did not approve of. Make a long story short, the legend is that the suitor was shot to death by the father, and the father and Alice were both burned to death. Alice's ghost is said to walk Jackson's Gardens (which is on my college's campus) during the first full moon of the summer. 

Why did this come back to me? Because in the summer of my sophomore year, I stayed on campus to take additional courses. It was that summer that I met Peter. On the first full moon of the summer, a bunch of us went out at midnight and walked Jackson's Gardens looking for Alice the ghost. Frankly this is NOT my thing! I scare easily. I was very leery doing this adventure! There were about four or five of us in tow, maneuvering our way through the dark Gardens. The photos I have posted tonight are from the actual Gardens! Truthfully we were very lucky to have this beautiful spot on campus. This was one of the many reasons I fell in love with Union College. The campus, was breathtaking, and made you feel like this would be a place I could really learn and grow. 

This unique tree is in the middle of the Gardens. If it could talk, I am sure it would have many interesting stories to tell. The Gardens were filled with all sorts of trees. I recall as graduation was approaching, Peter and I went into the Gardens and on one of the trees, we carved our initials. 

I find as I continue to face loss and grief, so many thoughts, feelings, and emotions rise to the surface. What I do know is that was a very special time in my life, where I thought the sky was the limit. If only I could relive those moments again, life was happier, freer, and I wasn't decimated and devastated.