Saturday, January 21, 2023

Saturday, January 21, 2023

Tonight's picture was taken in January of 2005. Mattie was two and a half year's old and being that it was New Year's Day, I was trying to get Mattie to take a photo with me. We literally found these party hats and things in our complex, and I thought Mattie would get a kick out of them! You can see his reaction! He was less than pleased with me. The only one that year who loved the party hats was Patches, our calico cat!

Quote of the day: If you want to lift yourself up, lift someone else up. ~ Booker T. Washington

I did my usual routine this morning, but by 10:45am, Peter and I were in the car and headed for Washington, DC. We were invited to a surprise birthday party for my friend Ann. 

For the past month or so, I have been working with Ann's husband on this event. We worked on the menu together and the rouse on how to get Ann to the event. Which I assure you wasn't easy, as she wanted to visit family this weekend in the Northeast.

Ann's birthday was this week, and the plan I told her about was that she was going to meet Peter and me in the city for brunch at noon. I told her the name of the restaurant (which I made up), and gave her a vague street address. I told her I had read about the best brunch in the city and wanted to try this place. She went along with it. I couldn't tell her the actual name of the place, because then she would have figured it out right away. 

Peter and I walked with Ann and her husband, Bob through the bar area to event space. A crowd of over 100 people were waiting in a dark room. All the lights were off. She literally had no idea what she was walking into!

This photo is of me, Tina, Peggy, and Jane. All women who support the Foundation and have worked with me on our awareness walks over the years. 

Us with Ann. 

One of the things I wanted to contribute to the party was a birthday cake. As I feel no birthday party is complete without a cake. So I ordered the cake and Ann got to blow out candles. I can't tell you how many little kids at the party were standing right next to Peter as he was cutting the cake and plating it!

The cake was a beauty and it was delicious. I would highly recommend Maribeth's Bakery, if in the Alexandria, VA area. They were super easy to work with and professional. 

I am fussy about cake, but this cake was tasty and light!

By the time the event was over, 3/4s of the cake was gone. 

Friday, January 20, 2023

Friday, January 20, 2023

Tonight's picture was taken in January of 2005. Mattie was two and half years old and that day he was invited to a birthday party. Next to Mattie was his cousin, dressed in yellow. Do notice that all the plates in front of each child were empty! Not Mattie's. Mattie for the most part did not like sugary things, so at parties, he typically would hand over his cake to me. But what always came with us was the trusty sippy cup of milk. I literally brought that purple and green cup with me from home that day. I NEVER left home without a sippy cup of milk. Certainly I could have gotten a cup at the party, but Mattie wanted HIS cup! Something I learned early on in our time together! 

Quote of the day: Kindness is the only service that will stand the storm of life and not wash out. It will wear well and will be remembered long after the prism of politeness or the complexion of courtesy has faded away. ~ Abraham Lincoln

On January 20th, I always post a tribute to my maternal grandmother. She died on January 20, 1994, at the age of 86. My grandmother lost her husband to colon cancer (when she was in her 50's) before I was born. By the time I came along, my grandmother was already living with my parents. So to me a multi-generational household was normal. 

Facts about my grandma:

1. She was born in 1907, in New York. 
2. Both of her parents were born in Italy. 
3. She was the oldest of five siblings.
4. She married at the age of 16. Her husband was born in Italy and was a contractor for commercial and residential properties. 
5. She had three children. Her middle child died (Sudden Infant Death). 
6. Though she did not work outside the home, she had numerous skills. Cooking being at the top of the list. 
7. She was a born caregiver and cared for everyone in her family. 
8. She sponsored many family members to come to America and is in essence responsible for their successes and improved quality of life. 
9. She was a kind, gentle, caring, and loving person. With a very easy-going personality. 
10. She had two grand-daughters, but she and I shared a very close bond. As I was known to call her "mom."
11. Her favorite color was green. 
12. She introduced me to Days of Our Lives at an early age. To this day, I still watch it. 
13. She played the piano by ear. 
14. She wasn't a fan of chocolate (not unlike Mattie).
15. She wasn't squeamish. She could handle everything from mice to seeing blood. 
16. She did not know how to drive. 
17. She loved to read and was well informed about all current events. 
18. She was a Bob Hope and Bing Crosby fan. As a result, I have seen all the Road to.... movies. 
19. She loved lily of the valley flowers. 
20. She suffered a massive stroke in 1990, which left her physically disabled. She died 4 years later.  

Kindness is truly a remarkable gift to receive. I took my mom to physical therapy today and my mom can be a tough customer. But Cassidy never disappoints. She is a true professional, who remains positive, has great energy, and is hopeful. I could see my mom really respond to her today. I am very happy I was able to convince my mom to move away from the therapist she had been working with since August, and start with my dad's therapist. 

After therapy, I could have taken my mom directly home. But I decided not to! My favorite pianist was playing in the lobby of Virginia Hospital Center. So I suggested to my mom that we get tea, sit, and listen for a while before driving home. She agreed. I do think seeing people, hearing music, and being able to do something more life affirming is positive for both of us. 

Here is a video I found on YouTube, taken around Christmas time at the hospital. It features Aija, the pianist, I am talking about! When she plays, you can't help but listen and absorb the beauty of her style. 

This evening, I took my parents out to eat in Maryland. We visited with our favorite server, Dawn, who is going on vacation this Sunday. Monday happens to be her birthday, so we brought her gifts to celebrate. I do not think she was expecting any of this, which is what made the whole thing even more fun. The beauty of Dawn is she is witty and inspires my dad to talk, be engaged, and is very alert when she is around. Which I assure you is NO easy feat while he is eating! 

Thursday, January 19, 2023

Thursday, January 19, 2023

Tonight's picture was taken in January of 2006. Mattie was three and half years old and was riding on Peter's toy duck. Peter had this toy when he was a child, and Peter's mom handed it down to us. To this day, this duck sits in my office and it reminds me of this moment in time. Honestly it is hard to believe that two years after this photo was taken, Mattie was diagnosed with cancer. 

 

Quote of the day: The torment of human frustration, whatever its immediate cause, is the knowledge that the self is in prison, its vital force and ”mangled mind” leaking away in lonely, wasteful self-conflict. ~ Elizabeth Drew

My dad's fitness trainer came over today. In fact, Teddy works with my dad twice a week. Teddy is wonderful, has a great personality, full of energy, and is very positive. Honestly I think he makes exercising look fun, if you can believe it. It takes a lot of coaxing to get my dad up and participating in body movement. I know my limitations, which is why I am thrilled we hired Teddy. My dad responds better to outsiders when it comes to physical requests. But Teddy does work my dad very hard. So hard that usually my dad is luggage for the rest of the day. Teddy explained that developing a new exercise routine can be very tiring for the first couple of weeks, until the body gets used to it. Therefore, we are in this low energy state into the near future. Of course in the middle of the fitness session, my dad needed to use the bathroom, and just like yesterday, he flooded the floor with urine. This is practically a daily occurrence, which means that I am cleaning more intensely than ever. I love when my dad argues with me and says that there isn't urine all over the floor. Now when he says this, I put paper towels all over the floor, so he can actually see what I do! I also do this to capture the fluid, so he isn't stepping in it and dragging it throughout the house. 

After Teddy left, Peter and I went outside and walked Sunny for a while. I needed to get out of the house, away from demands and tasks. However, I could tell my mom wasn't happy about my leaving the house. She was ready to go out, and was ticked off that I wasn't addressing her needs. I notice that she can no longer self-entertain, therefore is constantly looking to me to do things and to take her out. My dad is a full time project, but when I add my mom to the mix, some days I want to just scream. 

My mom doesn't like when I am on my phone, answering messages, and certainly doesn't like when I go out with a friend. Which is why I DON'T! I have no social life and it is a result of two things, intense caregiving, and my mom's attitude and negativity. 

Later this afternoon, I took my parents out to eat. We helped my dad to the car, and as he was beginning to walk down the garage stairs to get to the car, he tilted backwards. Fortunately Peter caught him. My dad's feet weren't moving, but his body swayed back! I have to keep an eye on this because this maybe a trend. A week or so ago, he had a swollen and painful hand. Which sent us to the doctor and for x-rays and a sonogram. Turns out his hand was fine, but I suspect he hit his hand while falling in some way at night while going to the bathroom. I can't watch him 24/7, and I have yet to understand how he injured his hand. After seeing what transpired today, I feel like I have a better understanding for what caused the hand injury. 

Wednesday, January 18, 2023

Wednesday, January 18, 2023

Tonight's picture was taken in January of 2004. Mattie was a year and a half old and as you can see was in the kitchen with me. Mattie was always intrigued by what I was doing and if I was in a different room from him, he'd come and find me. Mattie also got a kick out of our garbage can. Peter and I painted it be cow themed. A theme I happened to love at one time. Naturally if I loved something, Mattie also took a fondness to it! We were two peas in a pod. 

Quote of the day: I'm craving intellectual stimulation. First mind, body, and then soul. ~ SB Lavender

It was a very full day today. I did my usual morning routine and then after Peter dropped my dad off at the memory care center, my 5 hour deposition with the licensure board began. Fortunately it was conducted virtually, which gave me great flexibility. However, to prep for this wasn't easy. Not because I do not know the content, I do, but because my world is a complete nightmare. 

In order to take this call with some privacy, I vacated my office which is on the first floor by our family room, and moved to Peter's office which is on the second floor near our bedroom. I really did not want to move spaces, as I am used to working in my own office, and given the stress of testifying, anything new, sometimes can throw me for a loop. But I knew with my mom walking around, her playing the TV and the radio, there would be NO WAY I could take a call from the first floor and appear professional. 

So I migrated my things and computer upstairs to Peter's office and I got myself set up with hot tea, lozenges and so forth. What I found out about today is that I still LOVE my licensure work. Prior to moving to Northern Virginia, I served on the DC board for 18 years. That is right, 18!!!! I devoted a good chunk of my professional free time to crafting laws, regulations, and adjudicating ethical violations. Frankly I found my years on the Board stimulating, it kept me connected to my profession, and it also gave me an outlet outside of childhood cancer. In fact, after Mattie died, I gave up practically every other aspect of my life, except for my role on the Board. I wanted to quit soon after Mattie died, but the Board staff wouldn't hear of it! I am glad I listened to them! It has been the one positive consistent professional thing in my life. 

Today I was balancing both a Zoom call and a Teams meeting on the computer. The testimony was happening through Zoom and the side bar conversation (private discussion) with the Board attorneys happened on Team meetings. Typically I am not good at balancing all this virtual stuff, but it worked out today. In fact, I would say for five hours, I saw the true Vicki shine through. A part of myself I haven't seen for over a year! You should have seen me answering questions, defending my own professional field and identity, and representing the former work I did on the Board. Needless to say, I felt proud, I felt a part of something bigger than daily chores, and I felt mentally stimulated. It showed me that I am MUCH more than just a house cleaner, the changer of depends undergarments, the cook, chauffeur, bill payer, and appointment keeper. 

Throughout the call, Peter check in on me during breaks. I really appreciated his support emotionally and his help with the technology. He understood that today meant something to me, without me having to say it! Isn't that absolutely lovely!?  

Of course once the call was over and my dad came back into the house from the memory care center, he urinated all over the floor. Which meant, YES back to house cleaner status and managing tasks. I of course blew up, because what my testimony reminded me today is that at one time, I was a part of society, I had an impact in some way on the community, and I did have enough brain power to hold my own with six attorneys today!

Tuesday, January 17, 2023

Tuesday, January 17, 2023 -- Mattie died 694 weeks ago today. 

Tonight's picture was taken in January of 2004. Mattie was a year and a half old and I most likely snapped that photo back then because it captured some of the chaos all around us. Having a child is a major life change and the amount of things one accumulates in the process can be overwhelming. Certainly overwhelming when you have limited space and you are used to having order in your life. I do admit to needing organization in my life, but Mattie most definitely helped me embrace the beauty of being flexible. I learned to love books everywhere, Legos aplenty, and even toys that made noise.   

Quote of the day: Turn down the volume of your negative inner voice and create a nurturing inner voice to take it’s place. When you make a mistake, forgive yourself, learn from it, and move on instead of obsessing about it. Equally important, don’t allow anyone else to dwell on your mistakes or shortcomings or to expect perfection from you. ~ Beverly Engel

It is hard to believe that in the middle of my daily chaos, I am also trying to run a Foundation. I honestly do not know how I do this most days without cracking up. As I am projecting forward to the Foundation's newsletters, I reached out today to several people to submit quotes or material for my to include in upcoming publications. In the process of these email correspondence, one person did respond right away and she let me know that she is traveling now for her own Foundation work and then shared one of her Foundation's latest endeavors. Her idea is a great one and I commended her for providing this important virtual resource to our community. Of course while acknowledging her accomplishment, the next thing happening internally in my head was this question...... why am I NOT doing this already? My negative self talk, as tonight's quote points out, needs a volume adjustment, as it can drown out rationalization at times. 

In the midst of everything else going on today, I received a surprise package in the mail. My friend Nancy, sent me this adorable window friend. The heart she is holding says, "a friend always knows when you need a hug." Nancy and I have known each other for quite some time, as we met during our mutual time working for a professional association. Through our work, we became friends. Ironically when I first met Nancy, she was a caregiver to her mother. I even eventually shared my dissertation work with Nancy, as I felt that I had some appreciation for the stresses she was balancing. 

It seems like Nancy and I have now come full circle! When in the midst of such incredible stress each day, it is amazing how a kind email, a card, or a surprise gift can turn my mood around. Caregiving has caused me to be totally disconnected from the world around me and unable to be a friend anymore. Which is why I am grateful that my core support network seems to understand this, they do not have expectations or put pressures upon me, and amazingly they don't walk away. 

Monday, January 16, 2023

Monday, January 16, 2023

Tonight's picture was taken in January of 2004. Mattie was a year and half old and by this time he was walking independently. Mattie gravitated to cardboard boxes early in life. He loved stacking them, drawing on them, building with them, and even getting inside of them and pretending they were cars, trains, and planes! Life with Mattie was never boring. 

Quote of the day: Concentrate all your thoughts upon the work at hand. The sun’s rays do not burn until brought to a focus. ~ Alexander Graham Bell

I was determined today to get things done. Graham's quote is quite accurate, as a lot can happen once I can focus. In December, Mattie Miracle received a $10,000 donation from a credit union. Since that time, I have wanted to sit down and compose a personalized thank you note to their board for selecting us as well as generate bullet points that could be used for a press release they agreed to work on with us. A month later, I still hadn't done it! That hasn't been sitting well with me, so today I wasn't going to do anything else until the letter and bullet points were generated! Mission accomplished! From there, I went back to the Foundation's website and updated our entire 2022 donor list. That list alone took me days to complete. But I did it! 

Now I turn my focus to January's Foundation newsletter. In addition to this work, I will be participating in a five hour long deposition on Wednesday. I was asked to serve in this capacity due to my former work on my professional licensure board. The only way I am able to devote five hours to this on Wednesday is because my dad is going to his memory care center and I told my mom that she has to occupy herself until I am off of the Zoom call. 

Needless to say, my head is spinning and I am hoping that I can participate on this call without extraneous noise. I moved to the "country" to get away from city noise and congestion. The funny part is my next door neighbor has sheer chaos going on at her house. Here are just some trucks that are at her house. She bought the house around the same time as us, but she never moved in! Now she plans to move in this spring, but in the process has a ton of trucks working to take down trees in her backyard. The noise is intense! Honestly for the most part I can manage, until I have to actually have quiet around me. 

There are tree cutting machines, tree chippers, people all over the place, and loud noises that actually shake our house. The fun on the farm is never ending! 

Sunday, January 15, 2023

Sunday, January 15, 2023

Tonight's picture was taken in January of 2003. Mattie was 9 months old and that day we took "tot wheels" outside into our commons area. It wasn't a particularly cold day, but regardless of the weather, Mattie preferred being outside. Our commons area was completely enclosed from the public or traffic and this flat smooth surface made was an ideal place for Mattie to move around. In fact, it was here that Mattie learned to run, fly a kite, and even drive around Speedy Red (the ride on vehicle he got during the end of his cancer journey). 

Quote of the day: For a chronic migraine, there are no triggers, life is my trigger. For chronic migraineurs there are no cures, there are only patches that will get you through to the next bout. ~ Emily A.

When I woke my dad up this morning, my mom started with me regarding questions about her bank account and bills. Needless to say, I sat and listened to her for a while and then I lost it. I lost it because I am tired. I still had to get my dad up, make their bed, and get him showered and dressed. So hitting me first thing in the morning with financial questions is not my cup of tea. But I know her! Unless I drop everything and manage her issues, there will be no peace. So I told my dad I would be back after helping my mom. 

For the past two days between caregiving tasks, I have also been trying to update our Foundation's website to show 2022 donors and sponsors. I wish I could say this is a simple process, but each year it is the same laborious process of going through our database and scrubbing or adding to the list on our website. Honestly it takes me hours and given my current situation what would once took hours, now takes days or weeks! I find this very frustrating, as I never have a moment to concentrate on anything for long. Some days I handle the frustration better than others.

This afternoon, we took my parents out for an early dinner. We visit with Cheryl every Sunday. She is another favorite server of ours. On the way home in the car, we started talking about birthdays, which quickly led to a discussion of Cheryl's birthday! I remembered in my head that she is a spring baby. However, when I quickly looked at my contacts on my phone, December 5th popped up as her birthday. Which of course then made me pause..... did we acknowledge Cheryl's birthday?? No one in the car remembered and my mom kept peppering me with questions. Suffice it to say, during the car trip, I was really struggling to remember and the tension of this during the car ride triggered a migraine. Which is the state I am in now. Good news is, I looked up Cheryl's birthday and it is May 10th! I was correct she is a spring baby and NO I haven't not lost my memory yet. 

If you haven't put two and two together, then I will fill you in. Given the state of both of my parents, I am always worried when I forget something, or something slips passed me. I immediately jump to the conclusion that I too will develop dementia! Given the constant schedule here, the tension, stress, and very little sleep, it is no wonder that I have a migraine today!