Saturday, December 31, 2022

Saturday, December 31, 2022

Tonight's picture was taken in December of 2006. This was the year that the Christmas train became a fixture around our tree! To this day, this train continues to surround our tree in memory of Mattie. Mattie was four and half years old and this was the photo we selected for the front of our family Christmas cards. 

Quote of the day: Hope smiles from the threshold of the year to come, whispering, 'It will be happier.' ~ Alfred Lord Tennyson

 

I am quite certain that people do not have a true understanding for what Peter and I balance on any given day. To make a nice sit down dinner, two weekends in a row, is a killer for me. Not because I can't cook, I can. But I am juggling the impossible and therefore adding this to my plate is a nightmare. Thankfully Peter is a big help. But he is tired too, as this daily basis is wearing. What I can say objectively is that we did a beautiful job decorating the house this year. 

I love Hallmark Christmas movies because of the incredible decorations featured. Our house isn't ready for a Hallmark movie, but it is definitely festive. 

This is what our New Year's Eve buffet looked like. 

Our farmer's market ham.... ready to be baked. 

I made a three layer chocolate cake from scratch yesterday! It is one of my favorite recipes. 

Peter and me with Charlotte, our God daughter. She is 6 years old. Of course I can't think of this age without thinking of childhood cancer. This was the age in which our lives changed forever. 

My mom with us! 

Friday, December 30, 2022

Friday, December 30, 2022

Tonight's picture was taken in December of 2005. Mattie was three and half years old. That day we took him to Clyde's at Tower Oaks in Rockville, MD. Outside the restaurant is a little pond. A place Mattie loved to hang out and visit while we were dining at the restaurant. That day I sat Mattie down by the pond and we snapped several photos. This one went on the cover of our family Christmas card that year. Ironically I took my parents to this same restaurant today. This is where Dawn, our favorite server works. I think it is rather ironic that this same restaurant has supported me as both a caregiver to a child and now a caregiver to my parents. 

Quote of the day: Kindness can become its own motive. We are made kind by being kind. ~ Eric Hoffer

Today was another blur. I am so worn out that I literally have to drag myself out of bed in the morning. Since our God daughter and her parents were unable to come over on Christmas, we are having them to dinner tomorrow (New Year's Eve). Really any time I try to look normal and host a gathering, it takes WORK! WORK, WORK, and MORE WORK. Mainly because there is nothing normal about my life or household. Therefore trying to make things run smoothly takes an act of God. 

Peter and I prepped food for tomorrow and I baked a three layer chocolate cake this morning. While my dad was at his memory care center, I also set the table and walked Sunny. Literally from the moment I wake up and until I go to bed, I am moving. Moving, yet not physically feeling like myself. 

A few weeks ago, I bought a ham from the farmer's market. So we are baking the ham tomorrow and making all sorts of sides. This is what the table looks like.... it is ready for tomorrow! 

Thursday, December 29, 2022

Thursday, December 29, 2022

Tonight's picture was taken in December of 2004. Mattie was two and half years old. By this point, Mattie understood the notion of posing for a photo. So unlike the year before, in 2004, I did not have to do any tricks and entertainment to capture a special moment in time. This photo was featured on the front of our family Christmas card in 2004. 

Quote of the day: The need for connection and community is primal, as fundamental as the need for air, water, and food. ~ Dean Ornish

There were several revelations from today. Two of them came while Peter and I were out walking Sunny. I am trying to make a commitment to myself, Peter, and Sunny, for us to get outside and walk together, like we used to. By mid-morning, after all my chores are done with my dad and mom, I try to escape for 90 minutes. The timing works out because with the winter months, neither of my parents want to be outside. In addition, I find after breakfast both of my parents literally need to nap. 

While walking Sunny today, we went into the woods. It is lovely to hop on a trail right from our neighborhood, without having to get into the car. In the woods, we came across a mom with three of her children. The children were playing by a stream with rocks and things. The mom was taking a photo of the kids playing. I resonated with this whole scene, as I was big on capturing all moments, not such special occasions. Peter went up to the mom and asked if she wanted him to take a photo of all of them together! She really liked that idea and she handed her phone over to Peter. After Peter snapped several photos, we continued walking with Sunny. Peter told me he did this because he knows how special photos are to moms! Typically moms are taking the photos and aren't always in the pictures. TRUE, great point! I found Peter's reflections and actions with this mom very thoughtful and what that translates into is that Peter gets how important photos are to me, and also appreciates the fact that I do not have many photos of all three of us together. The ones I do have, I cherish. 

One thing that both Peter and I observed is that our neighborhood is NOT friendly. When I used to walk Sunny in Washington, DC, someone always stopped me to either pet Sunny, ask about him, or to comment on what a "beautiful dog" he was! In some ways, Sunny was like a magnet for conversation! I honestly came to expect this on all my walks. Mind you it wasn't just the first year we got Sunny, it was every year we have owned him. 

Moving forward to where we live now, it is a night and day difference. When we pass people on the street, most don't even make eye contact. They don't even say hi, much less comment on Sunny. NOT one person here has ever told me that Sunny is beautiful, or tried to pet him. It is like we are living on a different planet. The issue is so pronounced that Peter and I are conducting our own psychological experiment. We now go out of our way to say hi and wave to people as we walk passed them. We are profiling people, in hopes of understanding this phenomena and to find a trend to who actually responds. So far the data is NOT looking good! 

So why would people in the city be friendlier? One would think that people living in a crowded space would be more indifferent, protective, and keep to themselves. What is happening in suburbia defies common sense. The only hypothesis I have come up with so far is that people here are used to having more open space and appreciate that, purposefully trying to avoid contact with others while out walking in their community. Of course I don't understand this whatsoever, because to me connecting with others is the greatest gift in life. Another thought is that in the city, people become very attuned to who is safe to talk with and who one should try to avoid eye contact with. Therefore with that in mind, I feel people in my neighborhood haven't developed this skill and as a result they ignore everyone. For what reason, again I have no explanation. Which is why I am telling you we are studying patterns and behaviors. It bothers me that much!

It is not like Peter and I have nothing better to do! We do of course. But like tonight's quote points out..... connecting with others is like a primal need. 

Wednesday, December 28, 2022

Wednesday, December 28, 2022

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and a total live wire. I knew there would be NO way we could get him to stop moving long enough to take a Christmas photo for the front of our cards. So that day, I dressed Mattie up in a sweater and we took him to Target, Home Depot and Lowe's. We wanted to find a festive backdrop to snap a photo and I knew Mattie would sit still while in the shopping cart. Mattie loved those three stores, most likely because there was always something to look at that captured his attention. This was the photo we used in 2003 for the front of our holiday card. 

Quote of the day: You can’t calm the storm, so stop trying. What you can do is calm yourself. The storm will pass. ~ Timber Hawkeye

It was another busy day. My dad went to the memory care center, and after I walked with Peter and Sunny, I took my mom out to lunch and to shop at the mall. The mall was a zoo, but manageable. The café at the store was super busy, but I found a lovely person who served us and did me a favor, so I did not have to stand on a long line to order food. All I can say is when I meet a person who does an act of kindness, it lightens my mood. It restores my feelings about life and humanity. 

Once I got home with my mom, a stack of mail was awaiting her. I have learned to drop everything and help her process her mail. I used to get very upset with her because she can be demanding when she has bills to pay or other correspondence. But like tonight's quote mentioned, I remain calm and as a result it prevents a storm of emotion and anger. Nonetheless, I was at it for 90 minutes helping her. 

While I was driving my mom to the mall today, she started on me about wanting to drive. I outright said, NO! There are some things that I am adamant about, first and foremost it is her safety and that of others. When she mentioned that she was capable of driving, and then provided her with a long list of cognitive issues that I have observed which would make her an unsafe driver. She heard me. I acknowledged her frustration, but on the other hand, I have altered my life so that she has the freedom to go out daily. 

Meanwhile back at our house, there was a beautiful pileated woodpecker hanging out in our backyard. I am quite certain the woody woodpecker cartoon was based on this cutie. 

The moon and a plane flying through our backyard!

Look at these two! We have taken Sunny on a daily walk for several days now. I know he loves this outdoor time with us, however, today, he wasn't himself. This new chemo seems to be doing a number on him intestinally and energy wise. 

Miss Indie on the other hand demands outdoor time. Given that we have fox and other threats to her safety, she is only allowed outside under supervision. She isn't happy about this and can get quite vocal about her disgust with us. 

Sun setting in our backyard!

Tuesday, December 27, 2022

Tuesday, December 27, 2022 -- Mattie died 691 weeks ago today. 

Tonight's picture was taken in December of 2002. It was the first snowfall of the season, and it was the first time Mattie ever saw snow. Mattie was 8 months old, I dressed him up in his Santa suit, and we brought him out in his entertainment saucer on our deck. We snapped countless photos that morning and this was the one we landed up selecting. It was featured on the front of our family Christmas card. 

Quote of the day: I really don't think that's true at all. If you truly love someone, if they were ever important to you, it doesn't disappear. What it looks like might change, but that's only the surface. ~ Ciara Smyth

It was another typical day here. Except for the fact that it was the day to change my parent's bed linens. Since my dad uses 16 pillows, yes 16, it is a big labor for me. Which is why I only do it every two weeks. I have to plan for this day in advance because I can't have other obligations in the morning, as I land up doing three loads of laundry. 

Meanwhile, as I was running around doing chores, guess who was catching the morning rays through the window? Miss Indie! She is so easy going and a love. 

At noon, I stopped whatever I was doing, and Peter and I took Sunny out for a walk. I absolutely love this 90 minute break, to get fresh air, to walk at a normal pace, and to take in nature and the world around me. Of course Sunny loves it! Sunny is having a hard time with this new chemo, as he is vomiting and has diarrhea. 

Peter and I took the Christmas turkey carcass and turned it into soup! It is tonight's dinner. I am a big soup fan and ironically this is the first year I have gotten into making home made turkey soup. Most likely because I am very home bound with my parents and I also love food. So it was a natural connection to do something tasty and creative with what I have around me. 

We have neighbors up the street from us who are in their early 80s. They live independently and yesterday I went over and dropped them off a large Tupperware of leftover turkey, mashed potatoes, gingered carrots, and homemade stuffing. Not to mention Christmas cookies and red velvet cake. I am happy I could share these goodies with them and all I can think of is if I were there age, I would greatly appreciate it someone thought of me!

Monday, December 26, 2022

Monday, December 26, 2022

Tonight's picture was taken in December of 2008. Mattie entered the hospital that day through the outpatient clinic. He wasn't feeling well and was also running a high fever. He could hardly keep his head up. Which was why a pillow was sitting in his lap. Prior to this photo, Mattie's head was buried in the pillow. Mattie was visited by Santa and Mrs. Claus, who brought Mattie all his favorite toys (of course they had a little help from Mattie's child life specialist). Literally right after this photo, Mattie's head went back on the pillow. I am not sure how Mattie found the energy to manage this visit with a smile. I know if I were Mattie, Santa would have been directed to the door. 

Quote of the day: When I was a boy, and I would see scary things in the news, my mother would say, 'Look for the helpers. You will always find people who are helping. ~ Mister Rogers

I was prepared for this morning to be difficult. I knew it would be because my dad had not had a bowel movement since Thursday. This is what my life has come down to. I am sure this sounds ridiculous, but it is bordering on a national crisis in my household when my dad doesn't go. He can work himself up into a silly, and therefore, starts moaning, can be arched over in pain, and runs to the bathroom every 15 minutes. Before my dad went to bed last night, I gave him Ducolax and Senocot. I expected that to help. However, after I showered him, I could tell my dad was uncomfortable and shortly after the running to bathroom routine started. He has no rational understanding as to when he has to go to the bathroom, which makes the whole process mind numbing as his caregiver. 

Before I even brought him downstairs, I inserted a Ducolax suppository, because I knew if I did not get on top of this issue, the next step would be the emergency room. This happened in Los Angeles in June of 2020, which is why I am very experienced on this issue with my dad. He has irritable bowel syndrome and now he ranges from having the diarrhea to constipation form of the disease. It is a special kind of torture on top of dealing with moderate stage dementia. 

My dad managed through breakfast, but was miserable, and kept running to the bathroom. I finally reasoned with him and got him to walk around the first floor of the house. Movement is the best remedy. But I assure you, you can't concentrate, you can't focus or listen to anything else when he is in one of these states. It is like you can feel your blood pressure rise when in the midst of this bathroom crisis. 

I had promised Peter that at 11am today, we were going to walk together with Sunny. Given how my morning was going, I did not know if this would be possible. But I was determined to stick to my plans. Thankfully within two hours of administering the suppository, I could tell it was beginning to work and therefore I told my mom that she had to watch my dad for 90 minutes while we went for a walk. I set her up with a chair between the hallway and bathroom, so she could oversee what my dad was doing while also watching TV. 

I then escaped and had a lovely walk with Peter and Sunny. I find walking imperative to managing this stress and lack of freedom. Later today, we did take my parents out to eat. It is the only diversion they both can do and honestly my dad prefers eating out. At first I took offense to this, but I have moved passed this feeling. I have no idea why he loves eating out. I don't know if it is the control he has to choosing what he eats, or the social experience. But of course with all the laxatives on board, I had a major mess on my hands when he went to the restaurant's bathroom. I can't win and I am constantly juggling diarrhea or constipation. What I do know is the average person couldn't handle his personal hygiene needs and simply wouldn't do it. 

Sunday, December 25, 2022

Sunday, December 25, 2022

Tonight's picture was taken in December of 2008. It was actually days before Christmas. Friends dropped off all sorts of fun things for Mattie, including Christmas stockings, a little Santa and this red frosted donut. As you can see, Mattie put the Christmas stockings on his feet. He had a good sense of humor despite all that he was dealing with. He truly was a remarkable soul. One thing was for certain, Mattie was happier in the hospital than at home while battling cancer. Which was why it was not surprising to me that Mattie chose to died in the hospital. 

Quote of the day: It is hardly possible to build anything if frustration, bitterness and a mood of helplessness prevail. ~ Lech Walesa

Today was NOT a good day. I did not wake up in a bad mood, but early on the emotions of the day hit me. I feel for Peter, because he really tried, suggested that he and I open presents from his parents, and so forth. But I was not in the mood and it is 7:45pm, and I have still not opened a gift. 

Peter truly carried the day and worked hard in the kitchen. By 10am, we learned that our God daughter and her parents wouldn't be able to join us today, because they were all sick. It was very nice of them to be concerned about us, which I appreciate, but somehow I planned for food for nine people, and this simple change upset my apple cart. It sent me for a tail spin. I have no idea why! Maybe because I deemed them a diversion from the reality of being without Mattie and managing a full time caregiving load. 

I haven't been in such a funk for years actually. The feeling comes on and I honestly do not know what to do. If it were warmer out, I would have left the house and walked. I felt like I was going to explode and at the same time felt nauseous. Our friends who also lost an only child to cancer, did come over today. Naturally our conversation was much more real and honest, because we had no one's feelings to protect. Of course my dad was thoroughly clueless and couldn't process why today was a hard day for us! Where to go with that? 

My dad was an absolutely BUNDLE today. His dementia makes him act like he is about five. The world revolves around him and he can't think beyond himself and his needs. He had an explosive bout of diarrhea on Thursday and since then, has not had a bowel movement. So today he was miserable and very fixated on having to go to the bathroom. When I tell you he had me up every 20 minutes while our guests were here, I am not kidding you. I washed my hands more times today that is humanly healthy! The problem is my dad has no understanding of how often he is going to the bathroom. 

Meanwhile, I have one bathroom on the first floor. Normally it is set up for my dad. But today, I moved his commode out, so that guests could use it. You should have seen me, with each time he had to go to the bathroom, I tossed out the pretty sunflower rug in the bathroom that I have for guests and moved in his commode. It was like a bad episode of I Love Lucy, except I did not have Ethel helping me! Actually there was nothing funny about this, as my food did not go down right, and forget about having any sort of meaningful conversation. How can I when I am jumping up and down constantly? 

The Christmas pooch. Even Sunny wasn't happy. I think he feeds off of me and one thing he deeply misses is our walks together. 

Our Christmas buffet. 

Our friends Ilona and Attila with us. Even Sunny wanted to be in the photo. Mind you he got two big helpings of turkey today. 

The red velvet cake. 

This was our first attempt at a red velvet cake. We liked the frosting but felt the cake part was too dense. So something I need to work on.