Saturday, June 4, 2022

Saturday, June 4, 2022

Tonight's picture was taken in June of 2008. Mattie was six year's old and it was about a month before Mattie was diagnosed with cancer. At that point in time, we were clueless that anything was wrong with Mattie. That day, Peter and Mattie went to a baseball game together. Peter was introducing Mattie to the sport. Unfortunately for Peter, Mattie was a lot like me. Sports in general do not interest us. Instead, Mattie was intrigued by the PEOPLE, people watching, the food, and the activity all around him.

Quote of the day: With the new day comes new strength and new thoughts. ~ Eleanor Roosevelt

There is a lot of truth to Eleanor Roosevelt's quote. Or at least I relate to it. I had a bad night, and I went to sleep, and it helped me reset to tackle today. Fortunately I can do this, otherwise, the pace that I am keeping would not be sustainable. 

The house down the road from me had an open house today. I think it is important to understand the worth of things are around us. I also like touring houses for ideas. So my mom and I went today! Unfortunately today's house did not inspire me. Though I admit that I am NOT a mid-century modern fan. What was perplexing about this house is the outside was traditional, but inside was modern and austere. 

To me it's like finding Waldo! Can you guess where the refrigerator is? If you guessed to the left of the wall oven, covered in wood paneling, you would be correct. The kitchen did nothing for me, but depress me, and the floor was made of concrete. Again, trendy, but not me. 

After the house tour, I drove to a local art show, featuring the works of Patricia Strickler. Patricia is a chemist by training. When she retired she pursued her passion... painting. 

This is a photograph of Monet's Garden in Giverny, France. Many years ago, we saw this sight on a cruise tour. However, when we saw Patricia's painting of this scene during the Autumn months, it spoke to us and we purchased it. 

All paintings were VERY reasonably priced. Meaning nothing over $300. All proceeds went to the Vale Schoolhouse. A historic two-room school built about 1884.

We even met Patricia and she was kind enough to chat with us, tell us a bit about herself, and how she came about painting this particular scene! 

When we brought the painting home, which is in an art quality frame, I felt it needed to go above a fireplace. The painting has pops of orange in it, and of course I consider this a Mattie Miracle APPROVED color. 

A close up. It is the Autumn version of the photograph taken above. The painting is in watercolor and it is truly well done. It evokes beauty, nature, peace, and harmony, and for those of you who know me, then you know I am a BIG Monet fan. So the content of the painting resonates with me. I love supporting local artists and non-profits. 

Friday, June 3, 2022

Friday, June 3, 2022

Tonight's picture was taken in June of 2008. Mattie was six years old and it was literally a month before he was diagnosed with cancer. That day, we all went on a canoe together. Mattie and Peter did this often on the Potomac River, but that day Mattie wanted me to join them. Mattie loved his adventures on the water and he wanted to show me all that he learned on previous trips with Peter. 

Quote of the day: There are moments when mental overload can render words impossible. ~ Nicholas Sparks

I happen to be a Nicholas Sparks fan. I have read every book he has ever written. Why am I so intrigued by his books? Ironically it has to do with his understanding of grief, which may not be what attracts other readers to his books. Some how he is able to put into words these complex thoughts and feelings through his fictional characters!

I will never forget how I started reading Sparks books. In the summer of 1997, I had my friend Leslie and several of our college friends come visit me in Los Angeles. We got together to celebrate Leslie's engagement. Our gathering was my maid of honor gift to Leslie. While we were all gathered together, our friend Audrey started talking to me about Sparks' book, The Notebook (to be specific). Unlike Audrey, I did not enjoy reading for pleasure. Mostly because in all of my graduate work, I had to read non-stop, and therefore, whenever I got a break, I took a NO READING policy! Yet that particular day Audrey was recounting the tale that Sparks spun about a husband caring for his wife with Alzheimer's disease and his love for her and his devotion of recording their lives together in a notebook. She intrigued me enough to want to buy the book and read it. The rest is history. Of course this is all an aside, just seeing the quote tonight sent me on a complete tangent in thinking. 

Today was another winner. I have been working non-stop as a caregiver since November. That is close to 8 months now. Like every other morning, I got up at 6:30am, and hit the ground running. I got myself ready, got breakfast made, straightened up the first floor, then woke my dad up.... got him showered, dressed, and downstairs for breakfast. He went to his memory care center, and my goal was to go to the pharmacy and order Sunny's medications. However, my mom wanted to come with me, so I waited until she was ready. But she is dealing with intense neck pain, therefore instead I massaged her neck and she fell asleep for about two hours. By the time she was moving again, I had done some work and folded laundry. However, the pharmacy was on a lunch break, therefore, I knew I couldn't tackle that chore before I picked my dad up. 

Instead of going to the pharmacy, my mom and I went to the dry cleaner and then to CVS. From there, I picked up my dad, brought him home, helped him to the bathroom and then got him to rest in his recliner, while I ran to Walmart (Sunny's health insurance is accepted there) to talk with the pharmacist and fill Sunny's scripts. On an aside, every person I interacted with at this pharmacy was super customer friendly. What a breath of fresh air. 

From Walmart, I then ran home, and got my dad up and into the car, as I took my parents to an early dinner. Naturally while eating my dad had to go to the bathroom. I haven't eaten a meal in peace for months! When I got home, my thinking was I was going to change, write the blog and relax. HAH!!!! It is 10:45pm, and this is my first time sitting down. 

Instead of being able to relax, I cooked Sunny's chicken and rice (the only food he seems to eat on chemo), and at the same time my mom asked Peter for a receipt of the desk chair we returned for her. This receipt fiasco turned out to be a nightmare. As Peter worked the whole day, he wanted a chance to relax tonight and catch up with me. But that wasn't in the cards. Instead, he went through his files looking for her receipt, and now I have the next task to do which is to file a dispute with my mom's credit card company regarding this desk chair. The merchandise was returned but the company refuses to reimburse us for the chair. Get the picture of my day?

Thursday, June 2, 2022

Thursday, June 2, 2022

Tonight's picture was taken on June 2, 2008. Literally about a month before Mattie was diagnosed with cancer. We took him to Roosevelt Island that weekend so he could play with his remote controlled boat. Mattie's joke was that he was going to save all his pennies and money gifts so that he could buy a REAL boat one day. He was that intrigued by these forms of transportation. 

Also note the sandals Mattie was wearing. I will never forget them! When Mattie died, our neighbor's dog came inside and took one of these sandals. For years, JJ (the Jack Russell) kept Mattie's sandal in his doggie crate at home. To me this symbolized Mattie's connection to JJ, as JJ was depressed for months after Mattie died. 

Quote of the day: It is clear that a tired, under-slept brain is little more than a leaky memory sieve, in no state to receive, absorb, or efficiently retain an education. ~ Matthew Walker

I relate to tonight's quote. I am tired and therefore it is hard to focus on any one thing. Case in point, Sunny's vet was talking to me today because they found red and white blood cells in Sunny's urine. He was telling me that a urine culture would need to be performed (which takes three days), but because the issue isn't significant, he isn't putting Sunny on antibiotics until we get the results. I heard what he said and understood it on one level, but don't you know I asked him.... so are you putting him on antibiotics now?! After this came out of my mouth, I realized.... NO! He just told me that. The vet is aware of what I am balancing, so he handled it well. But there are days I wonder if I have dementia too. Of course the answer is NO, I am just very tired, overworked, strung out, and never have down time. I am sure this could produce problems with cognition for anyone. 

Sunny spent half of a day at the oncology center. He went practically the whole day without food, since he needed an empty stomach for more testing. In any case, Sunny's chemo dosage has been increased by 10mg, so I have no idea what will be in store for us tomorrow. Right now on 50mg, he is doing well and tolerating it, thanks to his pre-medications which help with nausea and stomach upset. What is perplexing is how expensive pet medication is, so much so that the vet is recommending we get all of Sunny's scripts filled at Costco. So tomorrow, I will head over to Costco and try to fill all of Sunny's meds except for chemo. Honestly I have so much I am juggling that I would prefer if the vet just gave me all these medications, rather than having to drive to Costco and deal with crowds and lines. Mattie never liked Costco, as he was affected by loud sounds and big open spaces. It was like sensory overload for him. Unfortunately Mattie's feelings have transitioned over to me. His issues have become my issues!

Meanwhile, once Sunny got home, we had one major storm after the other. So the poor fellow spent most of the day in the shower. 

Since it was a rainy day and my dad was home all day, I decided to take my parent's out to lunch. It helps break up the long days at home and enables us to interact with the outside world. Which is crucial, otherwise, I can feel myself ready to blow when I am home. It is a combination of frustration, stress, and anxiety. 

While I was at lunch, my dad asked the same question for the 100th time. Sometimes I can handle it better than others. But given that we just reviewed the content of what he was asking minutes before I snapped. I am not snapping because he doesn't remember, I am snapping because he makes NO effort what so ever to use the strategies he has learned to try to remember. He carries a small notebook and pen with him at all times. Want to know what's in the notebook? NOTHING. Despite prompts and reminders, and even suggestions, he never complies and uses the book. Which is why I ask him all the time.... why carry the book??

When I wonder whether he should go to the memory care center three times a week, I have a day like today. A day where all he wants to do is sleep in his chair and not be bothered, and I realize.... YEP he needs that center big time. He needs the stimulation and structure that only a group setting can provide. I am quite certain without this stimulation I would see dramatic decreases (beyond what I am already seeing) in his cognitive function. 

Wednesday, June 1, 2022

Wednesday, June 1, 2022

Tonight's picture was taken in May of 2008. It was at Mattie's end of school party. The children went to a park and I volunteered to help that day. In fact any opportunity to get involved, I always volunteered. I am happy I did because if I hadn't, I wouldn't have gotten a second chance at the experience. Pictured with Mattie were his very close friends, Charlotte (who Mattie referred to as his girlfriend) and Campbell. 

Quote of the day: Fatigue has many faces and many causes. Fatigue and tiredness mean different things to different people. ~ Michael A. Schmidt

In any given day, at any given moment, I am juggling multiple things. After I got my dad showered and dressed and downstairs for breakfast, my mom needed help with phone calls and bills. Mind you we were trying to eat breakfast. But I have learned that if I don't do things immediately it causes more problems. So I did it! My dad went to the memory care center today, and this gave me the time to complete all our Foundation acknowledgments for the Walk. I also was able to complete acknowledgments to all of our raffle donors. So it was a productive administrative day today. I find what would have taken me hours in the past, can now take me weeks. 

The everyday routine is sickening however. I know it has gotten my mom down. I think she was under the impression that things would be better here in Virginia, than they were in California. Of course I am a realist, and I know my dad's physical and cognitive issues are significant and NOT geographic dependent. I knew exactly what I was getting myself into but my mom somehow did not realize the huge impact it would have on my life, Peter's life, my social life, and married life. Having been a caregiver to Mattie while he was battling cancer, I absolutely know first hand the toll of being a full time caregiver. Certainly caring for aging parents is different than a child with cancer, but there are many overlaps. The commonalities are the physical toll, the mental and emotional toll, and the intense isolation. I have been there and am experiencing it once again. 

This afternoon, I stopped working and told me my we were going out! I drove to the mall and we actually ate lunch outside. Yes it was like 90 degrees outside, but she thrives in the heat and I frankly enjoyed seeing the greenery and hearing the birds, without jumping to meet my dad's multiple needs.

Tuesday, May 31, 2022

Tuesday, May 31, 2022 -- Mattie died 661 weeks ago today. 

Tonight's picture was taken on May 2, 2008. It was grandparent's day at Mattie's elementary school. Which was a big deal. There is a special breakfast, a concert, and a tour of the classrooms for grandparents. My parents flew in from California to attend and I signed up to volunteer at this event. I am SO GLAD I did. As it was our first and last grandparents day. I would never have guessed this. In any case, if I did not volunteer, then I would not have been able to observe the festivities and all the excitement of the day. This photo was taken by my mom. It was in Mattie's kindergarten classroom, where he was showing us some of his work. 

Quote of the day: KINDESS can transform someone's dark moment with a blaze of light. You'll never know how much your caring matters. MAKE A DIFFERENCE for another today. ~ Amy Leigh Mercree

When I say I feel like the walking wounded, I am not kidding. I am extremely tired. But I got my dad up today and to his memory care center. Of course my dad isn't happy about going, but in all honesty I feel it is good for him. He needs this stimulation, because without it he sleeps the day away at home. He isn't interested in talking on the phone, conversing in person, reading a book, watching TV and the list goes on. At the memory care center, they have constant activities, which switch up every thirty minutes. Everything from music programs, brain games, exercising, socializing, and of course snacks and lunch. 

While my dad was at the center, we had our new neighbor over. My loyal readers will know that this is the neighbor who will be demolishing her house and building it from the ground up. I met this new neighbor in the Fall. She bought her home around the same time we did, except she hasn't moved in yet. She and her family have been trying to figure out how to renovate the house. I have seen the interior of her home and completely understand why she wants to renovate it. The previous owner did not upgrade it at all or modernize it in any way over all these years. In any case, my neighbor has been keeping me informed about her plans. Yet about a month ago, I got a phone call from someone in our home owner's association (HOA). The phone call was truly troubling on many levels and the person upset me so that I hung up on her. So against my better judgment, since I was getting pressure from neighbors on my street, I wrote a formal letter to the HOA highlighting the street's issues with my neighbor's demolish plans. What a mistake this was! The HOA is useless, ineffective, and down right attitudinal. Therefore, Peter and I quickly understood that we want NOTHING to do with this HOA, and instead we will go back to our original plans and work directly with our neighbors.

So this morning, my neighbor came over so we could get to know each other better. I gave her a tour of our home (as she graciously gave us one soon after she bought her house). Then we sat on our porch and had lemon blueberry bread, strawberries from the farmer's market, and drinks. We spent about two hours together and it was a delightful morning. My mom joined in and she enjoyed the social stimulation of the visit. My neighbor and I operate on a similar wavelength, as she is a caregiver herself and knows full well the challenges of caring for people with special needs. Ironically her best friend reached out to Mattie Miracle last Fall and we only connected the dots today, as we did not know we had this connection in common! It is a small world and I do believe that every communication deserves a response and to be taken seriously. 

My life is so chaotic now, that so much falls through the cracks. But I am glad that my response was helpful and memorable. To me this is important, as I never want someone to feel misunderstood or not important in my eyes. Before my neighbor left, she surprised me, as she and her husband will be making a big donation to Mattie Miracle. It is thanks to this family that we will exceed our Walk financial goal this year. IT IS A MATTIE MIRACLE INDEED!

Monday, May 30, 2022

Monday, May 30, 2022

Tonight's picture was taken in June of 2006. Mattie was four years old and that day he went with Peter and his friend Zachary (and Zachary's dad) to A Day Out with Thomas in Pennsylvania. As you can see Mattie was all business here. Because it was a father and son outing, I did not go. So I did not get to experience this first hand, but from Peter's recounting of the day and the photos, I could tell Mattie had a GREAT time! Mattie was IN LOVE with trains, and loved the TV series..... Thomas the Tank Engine. So seeing a life size Thomas train that he actually rode was a big hit. 

Quote of the day: It's not the load that breaks you down. It's the way you carry it. ~ Lena Horne

Peter spent several hours outside with my parents today in the backyard. This gave me time to do laundry, bake, and go grocery shopping. Peter worked all morning outside, transplanting shrubs! The previous owner had azaleas where azaleas shouldn't be. So by the afternoon, Peter jumped in the pool. My parents got a big kick out of seeing this. 

Peter has been spending a lot of time outside. He has really transformed our property. He has been taking all sorts of photos and sharing them with me. This is one of his night shots, with the house reflected into the pool. 

I found this receipt in my purse today. It was a dining bill from Clyde's of Reston. The restaurant that closed its doors after 20+ years. We loved everyone who worked there and we had the good fortune of getting to know the assistant general manager. Anthony would treat us many times to free appetizers, free dessert, and on closing night, comped our entire dinner. He is very thoughtful and generous and we miss our chats with Anthony. He is a very inspirational person and clearly an outstanding leader. In any case, one day, we received our dining bill and on it, it said... Employee Family Discount. He wrote this because he wanted us to know that we are part of the Clyde's family. 

I am meeting with our new neighbor tomorrow morning. She hasn't moved in yet, as she is in the process of planning an extensive house renovation. I am happy she is coming over so we can get to know each other and develop a line of communication so as things arise with construction we can work it out together. To me no gathering is right without something to eat and drink. So I baked a lemon blueberry loaf today. 

Sunday, May 29, 2022

Sunday, May 29, 2022

Today's picture was taken in May of 2007. Mattie was 5 years old and a typical spring time activity for Mattie was coming home from school with tent moth caterpillars. We would put them in jars, feed them oak leaves, clean their jars daily, and wait to see the cocoons form and then about a week later, the moths would emerge. We always had moth release ceremonies together on our deck. I remember the first time Mattie brought moths home from preschool. I was a little stunned to tell the truth. But he was fascinated by them and I figured what a better way to learn about metamorphosis then to see it first hand in one's home. So we jarred them and then had to figure out what they ate. They would only eat oak leaves for us. Fortunately we had one oak near our town house. Before we left our town house in August of 2021, we took some acorns from this tree with us. We have potted these acorns and we have two baby oaks growing in our backyard. They are forever Mattie. 

Quote of the day: Appreciation is a wonderful thing: It makes what is excellent in others belong to us as well. ~ Voltaire

Today did not go as I had planned. I wanted to get my dad ready, have breakfast, do his cognitive and physical therapy exercises and then go walk Sunny. I miss my walks and my time away from chores, tasks, and demands. But my dad went outside today and with that, I had to stay and supervise him. My mom came outside and we all got to talking. Peter has some up coming travel and I mentioned that it would be nice to go, but I know I can't. I can't do anything other than my daily routine. Which I assure you isn't for the meek. This comment wasn't appreciated by my mom and this caused us to argue. Which is not atypical for us. Remember we have been living with 2,500 miles apart for decades. I am not saying I don't have a strong personality too, I do, but I have had my own ups and downs in life, and I had to figure them out with very little family support. 

We went out for an early dinner tonight and I got into it again at dinner. I think hearing comments that I translate to being unappreciated, upset me. Especially when it is clear to me that cooking, cleaning, and managing a household are considered simple tasks. I do not view them as simple, and I most certainly do not view them as simple when managing my dad's care, helping my mom, and trying to run a Foundation. 

I suspect all the arguing irritated my dad and for him it comes out as an irritable bowel attack. Peter and my dad left the restaurant before my mom and me. As we stayed behind to use the restroom before getting into the car. When I was done, I walked outside and immediately saw Peter helping my dad back into the restaurant. My dad desperately needed to use the restroom (mind you he did not feel this coming on before leaving the restaurant). That of course meant I had to move quickly to get him to the bathroom. We did not make it in time, and instead, there was poop all over him, his shoes, the bathroom floor, and well you get the picture. It was a big clean up job. I am going out on a limb, but I am quite certain that NOT every adult child could handle this!

The one entertaining part about dinner was seeing a wedding outside the window. It was taking place on the restaurant's terrace. I remember my wedding as if it were yesterday. We thought we had a bright and happy future ahead. But life had other plans. Of course, being honest, I can't view weddings and baby showers as positive events anymore. Instead, my lens is now..... I wonder what is in store for this couple or baby?

The ceremony and the reception were outside. This couple is very lucky they had a beautiful weather day, no rain, and it wasn't humid. For our area in May, this is a real gamble. The ceremony itself was about ten minutes long. But I enjoyed seeing the people and examining what they wore to the event.