Saturday, December 17, 2022

Saturday, December 17, 2022

Tonight's picture was taken in December of 2002. It was Mattie's first Christmas and I wanted a photo of Mattie by the tree. My best solution was to bring over Mattie's high chair. As you can see Mattie looked stunned and had no idea what was going on! The ironic part about all of this was Mattie did not like his high chair. When we introduced Mattie to this high chair to eat solid foods, he refused. For many months, I had to feed Mattie in his car seat instead. He always loved that seat, for what reason I have no idea. 

Quote of the day: Remember, there’s no such thing as a small act of kindness. Every act creates a ripple with no logical end. ~ Scott Adams

Today was a day filled with all sorts of emotions. My frustration over being tied down to the same routine each day is hard, but at times it is my mom's attitude that truly makes this routine much worse. 

This morning, despite the cold, we went to the farmer's market. We have gotten to know Stephan, a local artist who plays at the market each Saturday. He sounds just like James Taylor to me and I relate to his music. Today, Peter and I sung several Christmas carols with Stephan!

After we got home and unpacked things, we took Sunny for a walk. I feel awful for my lack of time and attention to Sunny. We have a close bond, and I know he misses our daily walks and routine together. 

Later today, we went to Mattie's memorial tree to decorate it and the surrounding trees with ribbons and ornaments. This one particular ornament is from my friend, Margy's family. It say, M&M, for our M&M Wishes program. Before Margy died, she would visit Mattie's tree on holidays and on the day he died. 

What I love about this photo is it captures Margy, her husband, Peter, and me together. 

This is Mattie's fourth memorial tree. But we call it his official tree. It is a white swamp oak. Mattie LOVED acorns and it was only fitting that such a tree memorializes his amazing life. 

I have to admit while we were at the tree, my parents stayed in the car and were totally disinterested in the tree and what we were doing. To say that this isn't hurtful would be lying. Rationally I know that dementia impacts both of them and this disease leaves them tuned into only themselves. 

It was a cold and blustery day so when I left my parents in the car, I had the windows shut. At one point, my mom opened the car door and told me they needed air in the car, and was irritated with us for taking so long. That I did not start screaming then and there is a testament to my fortitude. 

It is hard to see but there are all sorts of ornaments on the tree and this year, I added a "love you to the moon and back" to the tree. This is a saying Mattie and I said to one another often. It was our saying!

This is the third memorial tree. It is a Yellow Wood tree. It was split practically in half during a storm. Though it is a hardy tree, I did not like that Mattie was being remembered symbolically by a cracked tree. Which is when the White Swamp Oak was planted in 2018. 

This is memorial tree number 2. I refer to it as the Charlie Brown Christmas tree of Mattie's grove. I always put a ribbon around Charlie. 

I take my parents out to eat several times a week. Definitely on Saturday and Sundays. It is like the main event of the day. So for a year, we have been going to the same three restaurants. They are all part of the same restaurant group. 

On Saturdays, we usually go to Tower Oaks which is located in Rockville, MD. It is a royal schlep to get there, but we love our server, Dawn. We met Dawn at the Reston, VA  Clyde's, but unfortunately this restaurant closed its doors in May of 2022. Because we love Dawn, we make the hellish drive to Maryland to see her once or twice a week. I told Dawn yesterday that we wouldn't be seeing her today, because we would be in Alexandria, VA visiting Mattie's memorial trees. I did not say anything else. I never told her that I was going to dine at the Clyde's of Alexandria. But she is smart and put two and two together. 

After visiting the trees, we drove to the Clyde's of Alexandria. We have been dining at this restaurant for decades, as it was only blocks away from Mattie's preschool. He absolutely loved this restaurant and therefore the whole space holds special memories for us. 

We have gotten to know the management at this Clyde's and when Tim seated us tonight, he told me that our bill would be comped in full. I literally asked him why and who would do this? Want to know who? Try Dawn! She called the restaurant and gave them her credit card number. 

Dawn then sent me this photo by text message while we were eating! Dawn understands loss. Why? Her son was murdered in 2016, at age 29. I actually just learned about this today. For a year of knowing her, I never knew about her son, but she treated us to dinner, not because we are one of her best customers but because it was one bereaved mom to the other. 

When Dawn heard me say we were visiting Mattie's memorial tree, she took it upon herself to do an act of generosity and kindness. Something to brighten my day! If you want to know why I drive an hour both ways to see Dawn, it is because people of her caliber do NOT grow on trees. I consider her an important part of my social circle and she takes excellent care of my parents and all of us while dining. Forget the Christmas presents and other material gifts, I will take the blessing of knowing someone like Dawn any day of the week!

Friday, December 16, 2022

Friday, December 16, 2022

Tonight's picture was taken in December of 2002, Mattie's first Christmas. Mattie clearly did not understand what was going on or why I was snapping photos. But I am glad I captured all the special moments as well as the day to day adventures. When I look at this photo, the notion of childhood cancer was not even on my radar scope. At that moment in time, I thought raising an 8 month old was challenging. Little did we know what we would have to face as a family. 

Quote of the day: Though those with Alzheimer's might forget us, we as a society must remember them. ~ Scott Kirshenbaum

Tonight's quote maybe true, but what I know about caregiving for a loved one is unfortunately my ability to remember the once healthy person dwindles. My mind gets fully consumed with the debilitated person. This altered person becomes my new reality and it takes a great deal of work to REMEMBER the person I once knew! I certainly went through this with Mattie. I worked hard to keep the spirit of the healthy little boy alive for Mattie while he was battling cancer. But some days it was hard to do given how cancer changed Mattie's mind, body, and spirit. 

Though my dad is not dealing with cancer, his mind has been ravaged by dementia. He is not even 1/16th of the person he used to be. He has no memory of his former life and instead I have to be his institutional knowledge. But I am not his wife, I am his child, and therefore my understanding of his life and experiences are different. I have a different lens. On top of which, my parents lived 2,500 miles away from me during my adult years. So in essence we were living two separate lives. I can't remember things for him because I did not share them with him. I have many issues around my parents decision to stay in Los Angeles while I remained in Washington, DC, as I had encouraged them to move and stay in our region back in 2005. However, after trying a relocation to Washington, DC for two months, they quickly moved back to LA in 2005 and remained there until I had to move them East in 2021. 

Last evening, I went to a friend's house for a small social gathering. Social gatherings and me don't always go well. In fact, I would say the majority of times they leave me sad and depressed and last night was no different. Holidays are troubling for me, and when women chat, it is natural for them to talk about their children. I can absorb so much of this talk, but now given my intense caregiving role, my patience and tolerance are VERY low. I also think all family caregiving is not the same. Women may refer to themselves as caregivers, but it is impossible to truly comprehend the day to day grind of what I manage unless doing it yourself. It is a night and day experience managing a loved one's care from an institution, rather than in your own home. 

Peter has been going through bins in our basement and came across two of Mattie's teeth! As you can see this was the second tooth Mattie lost. 

When Mattie lost a tooth, we would write a note to the tooth fairy and leave it by his pillow at night. Mattie did not want money, instead, he made specific requests! 

Sunny is on the prowl tonight!

Ricky the Raccoon! We had to pull Sunny inside because he was clearly spooking this fellow!

Thursday, December 15, 2022

Thursday, December 15, 2022

Tonight's picture was taken in December of 2002. I absolutely loved that red Christmas onesie on Mattie. But what I particularly love about this photo was it captured Mattie's early desire to walk. Mattie was only 8 months old, but he had no interest with sitting on the floor or crawling. He wanted to be up and moving.

Quote of the day: Focus on the journey, not the destination. Joy is found not in finishing an activity but in doing it. ~ Greg Anderson

Peter brought home some carnations and pine yesterday and I quickly put together two flower arrangements. Everything in my home needs to be done quickly, because managing my parent's needs is a full time job and then some. They both have constant demands which is why the only way I was able to get my continuing education credits done toward my license renewal was to work while they are sleeping at night. 

Both arrangements. I would say that Peter and I have really transformed our home for Christmas. My parents have no interest in decorating, so we manage everything ourselves. 

The glow in our dining room in the evening. 

One of my arrangements in the front hallway. Ironically I bought those green tree candles in Los Angeles in 2021. They successfully made the move across country. 

This evening, I have been invited to a friend's house. In order to attend this gathering, I literally drove my parents out for an early lunch, and then drove back home. Each way was about a 40 minute commute. Shortly, I will be jumping back in the car once again for another long commute to my friend's house. Since my parents moved here, besides intense caregiving, I have also spent countless hours driving around and shuttling them from one thing to another. They are no longer stable enough to put in a taxi or uber on their own. 

I have noticed now on several occasions, that my mom gets confused when we are out. She can't recall the direction from the bathroom to the dining table. This is noteworthy because we only dine at three restaurants. So in essence they are like a second home for us. 

It was a cold and raw day, as it has been pouring all day. One of the managers of the restaurant offered to get my car in the parking lot and pull it up by the front door. As anyone can see my juggling act. I thanked him but I managed on my own. I took my mom to the car first with an umbrella and got her in. Then moved the car closer to the front door, and jumped out and got my dad. My parents need assistance with just about everything, such as putting on and taking off coats and jackets. 

One could say that going out tonight will be a bit of a respite. My reaction to this is somewhat. As the prep work makes me wonder if it is worth it. In addition, I am simply tired and once again my life doesn't like look most peoples. Therefore making conversation is challenging. But overall, I do think you can get to a point of being so tired and worn out and even an hour or two break doesn't cut it. 

Wednesday, December 14, 2022

Wednesday, December 14, 2022

Tonight's picture was taken in December of 2002. Mattie was 8 months old and getting ready to celebrate his first Christmas. Back then I was adjusting to the change within our home, as baby items had a way of filling up a room quickly. Despite the research, we did buy Mattie an activity walker. I did this because Mattie wanted desperately to move independently. He did not like crawling and seemed to have the leg strength to hold himself up and loved the fact that with this little wheeled vehicle he could follow me around.

Quote of the day: Even though people experiencing dementia become unable to recount what has just happened, they still go through the experience—even without recall. ~ Judy Cornish

I started the day with an attitude adjustment. As my dad was going to the memory care center, I decided to make lunch arrangements for me and my mom at the Neiman Marcus Café. Typically I am not a Neiman Marcus shopper, but I do like their café. It is a special and more intimate experience. 

Thank goodness for calendar reminders. I completely forgot that I had an interview with the director of volunteering at Georgetown Hospital at 11am. I applied to become an official volunteer, because it is the only way I can get into the Hospital and push our Snack and Item Cart. I had the opportunity to introduce our story and Mattie Miracle to a new person today. It was a video call, so the interviewer could see my office. She was taken aback by it, in a positive way! She thought it was so beautiful and creative, in fact she asked me if it was a virtual back drop! NOPE! My backdrop is all of Mattie's creations. My whole office is inspired by Mattie and I chose this purposefully to honor his memory but also as a visual reminder of why I do what I do!

I think going out to lunch was helpful for me and my mom. I get very bogged down in intense caregiving and when I can go out and eat without worrying about choking and bathroom issues, it is more freeing. I can be more myself, which I worry is slowly getting lost by the wayside. I think caregiving does strip away one's identity and unfortunately I already experienced this crisis once before. 

After lunch, we walked through the department featuring Christmas items. We came across this beautiful Christmas skirt. Want to guess how much it is????

Try $1,000! Beautiful but we quickly moved along and had a good chuckle. The tree skirt motivated us to leave and instead we went to CVS and I picked up a few more ornaments for Mattie's memorial tree, which we plan on visiting this weekend. 

When I got home, Sunny was waiting for me in the driveway. He misses my attention. So I went inside, dropped everything, and got my sneakers on to walk Sunny. We walked for over an hour through the woods and it was a peaceful experience. 

Tuesday, December 13, 2022

Tuesday, December 13, 2022  -- Mattie died 689 weeks ago today.

Tonight's picture was taken on December 5, 2002. I will never forget this moment in time. It started to snow and I literally opened the door for Mattie to look at it! It was the first time he ever saw snow and the result was it caused him to stop in his tracks. He was fascinated by that white stuff. He wheeled himself over to look at it for quite a while and eventually we brought him outside to experience it on his face. 

Quote of the day: Do not let the roles you play in life make you forget that you are human. ~ Roy T. Bennett

Today was not one of my finest moments. I am under a great deal of stress and pressure each day, and the lack of freedom and control over my life gets to me at times. We had to leave the house at 10:45am, so that I could get my dad to his foot doctor appointment. The building where this doctor is located has a big parking issue. The garages are shut down and under repair, indefinitely. Which means that I need to valet park the car. That doesn't sound difficult but the area for drop offs is small and I can't just let my parents off because they both need great assistance out of the car and to the front door. Basically what I am saying, is I stress out over the logistics, so my parents don't have to!

I was running around all morning at home and decided to put the laundry away that I did earlier before leaving for the doctor appointment. As I was putting my mom's laundry away, I reminded her that we had to leave within five minutes. She snapped at me and told me she wasn't ready and was doing something. I did not take well to that! I walked out of her office, got my dad up from his recliner, put on his coat and put him in the car. My mom then came downstairs and was fiddling around with her shoes and other items. At that point, I lost it. We were already 15 minutes late in leaving, so I grabbed my coat and left her in the kitchen. I started the car, opened the garage door and was going to leave her behind. She started screaming and my dad then said he wanted to get out of the car. NOT an option as he had an appointment. 

I did stop and let me mom into the car, but I was trying to make a point to my mom. This is a habitual problem I face with her. No matter how many times I alert her about when we are leaving, and give her a count down in minutes to when we will leave, IT DOESN'T matter! She is never on time and instead always makes me late to appointments, and then complains that I am rushing her. 

While in the car ride to the doctor, I must have been screaming for at least 15 minutes. My mom then threatened me that she was going to a nursing home and today I said, 'go ahead, let's see how long that lasts.' My mom is behaviorally very challenging and emotionally exhausting. The average person would have a hard time managing her. The world revolves around her and when it doesn't she has a way of making us miserable. 

After screaming, I then decided I had to calm down because this stress is going to make me very ill, and I was driving a car! Naturally after behaving this way, I felt guilty. This is NOT me. It is what I am becoming that I am not happy about. I did write to Peter while I was out and filled him in on what was happening. His responses are always normalizing and validating and he confirmed for me that most people would have lost it months ago. But the word he used was human, he reminded me that I am human, and despite that I am doing the extraordinary, I can't forget that at times I can't always be and act like super woman.  

Monday, December 12, 2022

Monday, December 12, 2022

Tonight's picture was taken in December of 2004. Mattie was two and half years old and why I most likely snapped this photo was because both Mattie and Patches, our calico cat, were fascinated by the boxes that came in the mail. Mattie understood that these boxes were filled with Christmas gifts, and that he had to wait until December 25th to open them! Mattie and Patches had a special bond and I will never forget when Mattie was sick, she'd stay close to him and lay on his bed. There was a reason I always called her Nurse Patches! After Mattie died, Patches spent practically the whole day lying on Mattie's bed. Something she never did when he was alive. 

Quote of the day: Talents are best nurtured in solitude, but character is best formed in the stormy billows of the world. ~ Johann Wolfgang von Goethe

A few weeks ago I received an email from someone who said they wanted to give us $10,000. Frankly at first, I wasn't sure if this was legitimate. So I did a little searching on the internet and checked out who the people were trying to donate to Mattie Miracle. 

Today, Peter and I went to the US Senate Federal Credit Union in Alexandria, VA and had the opportunity to meet with Jim Anderson (the President and CEO), Arthur Green (the VP of Marketing), and Eddie Villanueva (Members Engagement Assistant). 

Peter and I are pictured with Tim, the President. We had the opportunity to tell them more about us, highlighted the work that we do, and even learned how they connected with us. 

Here is the actual $10,000 check! Tim told us that three of his colleagues died this year from cancer. Because of this great loss, the Board of Directors decided that they wanted to support a non-profit that helps people with cancer. Two of the Board Members recommended us specifically. 

We are deeply honored to have this support and we are pleased to hear that this is the beginning of our collaboration and partnership. This is our greatest Christmas gift this year, as it is so personally meaningful to us. They could have selected any cancer group in the community, but they chose us. A BIG thank you to the US Senate Federal Credit Union, a bank with a heart, that cares about making an impact within the community. 

Sunday, December 11, 2022

Sunday, December 11, 2022

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and we wanted to get a photo of Mattie to feature on our holiday cards! Yet Mattie was a live wire and had no interest in posing for pictures. So I came up with the idea of dressing him up and putting him in a shopping cart. We tried Target, Home Depot, and Lowes. I can't tell you how many photos we took that day. As you can see Mattie was intrigued by all the lights and decorations. This was NOT the photo that went on the front of our card, nonetheless, it captured the beauty of Mattie's curiosity. 

Quote of the day: All the beautiful sentiments in the world weigh less than a single lovely action. ~ James Russell Lowell

It was another busy day on the farm. Peter and I were determined to get our Christmas tree up and decorated today. It was a feat, but we managed it. Keep in mind that Peter and I only started decorating again for Christmas (post Mattie's death) last year. For 11 years, we had been without a solitary decoration. Moving to the house in 2021 and having my parents living with us, forced us to re-engage with the holiday in some fashion. All I know is at a minimum decorating orients my parents to the season, so this compels me to activate. 

This is what our tree looks like this year. Last year we had it in front of the window and I had to re-arrange the entire dining room to accommodate the tree. This year, we have it tucked off to the side. The down side is you can't see it from the street. 

A close up!

Over the years, I saved many of the ornaments Mattie made in preschool. I happen to love this one, which is featured front and center on our tree. 

A friend of mine made Mattie Miracle ornaments for my volunteers and she saved one for me! I am so glad she did!

I bought this blue moon last year in Hallmark. It says.... Love you to the moon and back! A saying I said often to Mattie when he was alive. 

In preschool, Mattie decorated this pinecone! 

This year, I bought a gold toned moon for the tree in honor of my Mattie Moon!

During Mattie's first year in preschool, he made these cute mitts and his teacher laminated them! 

Mattie's painted star. You may notice a Christmas ornament in green that says Anthony (my paternal grandfather). I have an ornament on our tree for every grandparent who died. I started this tradition decades ago. 

Do you see the heart? It is made out of cinnamon. Mattie made it in preschool. It is the only one that survived storage.