Saturday, July 15, 2023

Saturday, July 15, 2023

Tonight's picture was taken on July 15, 2007. It was our wedding anniversary and I know this immediately because of the colorful goblets Peter and I were drinking out of! These goblets belonged to my paternal grandparents, who also got married on July 15. Each anniversary, they would toast one another with these goblets. When we got married, my uncle sent me these goblets and shared the anniversary tradition with us. We kept up the tradition and on July 15th, we used to take out these goblets and celebrate our union. In this photo we were sitting on our townhouse deck. It was a small space, but it was big enough for Mattie's kiddie pool, and his sandbox, which Patches LOVED sitting on and being a part of the family. This snapshot in time captured an incredibly sweet and unplanned touching moment.

Quote of the day: I saw that you were perfect, and so I loved you. Then I saw that you were not perfect and I loved you even more. ~ Angelita Lim

Today, Peter and I have been married 28 years. I can still remember our wedding and the excitement of starting our life together. Back then we had no idea how our lives would be filled with tragedy and sorrow, as well as absorbed in caregiving for Mattie and my parents. 

This was us on July 15, 1995!

No matter how challenging things are, a life filled with flowers always makes for a beautiful day. 

Every Saturday, we go to the same restaurant, located in Rockville, MD. Our server is an extraordinary lady named Dawn. Dawn is great with my dad and truly looks out for all of us. She surprised us with this adorable rainbow balloon, with a cloud representing me and another for Peter. 

Dawn also gave us a mini rose and this wonderful cake!

A close up of the cake! It was delicious and I am a BIG cake fan. Whenever I look at a cake, I think of Mattie. As he would only eat vanilla and hated chocolate. This particular cake was a marble cake, and when I saw it, what jumped out in my mind was if Mattie were with me, I would have to cut out the chocolate part of the cake and give him only the vanilla. We had it worked out, as I would usually give Mattie my vanilla and I would get Mattie's chocolate. The funny and silly things I remember, but somehow seeing the marble cake today, made me feel like Mattie was with me!

A close up of the cake! 

Friday, July 14, 2023

Friday, July 14, 2023

Tonight's picture was taken in July of 2005. Mattie was three years old and we were on our yearly trip to the beach in North Carolina. By that point, Mattie loved the beach. Not so much going in the water, but most definitely being on the sand. The Outer Banks will always hold special memories for us and I am so glad we made these trips happen. 

Quote of the day: He knows not his own strength who hath not met adversity. ~ William Samuel Johnson

This morning, I got up early so that I could get my usual routine accomplished. I took one look at my dad's hand, arm, and face, and realized I had to contact the doctor yet again! What the photo doesn't show, is that my dad has blisters that are oozing. Naturally I can't stop him from scratching, even when I put cotton gloves on him.

Do you see that lump under his chin? Also part of the allergic reaction! I knew my dad needed to go on prednisone. My dad is very allergic to bug bites and my joke is he needs to live in a bubble! It makes it impossible to enjoy the summer outside, as he and my mom constantly get bitten. One bug bit is like the end of the world in my house. I have been dealing with this issue ALL week. My mom has pronounced that she NO LONGER wants to eat outside on our porch. The one space and time in the day that I really enjoy. It figures! 

After interacting with the doctor this morning, I then contacted my dad's memory care center, as I did not want more questions about his arm/hand. I explained his care of plan and when he got to the center, they wrapped up his hand for him because of the excessive oozing. When my dad got home this afternoon, I started him on the steroid. I am hoping it works its magic, but I am tired of one crisis after the other. 

Meanwhile, I took my mom into the city today for a massage, while I had a facial. I haven't had a facial since perhaps 2018. The beautiful part about all of this is I have returned to the salon right next to our townhouse (where we used to live) in Washington, DC. I went to that salon for decades, starting in my 20s! In so many ways, going there is like returning home. I have decided to not go back to the salon we were going to in Georgetown. Georgetown is too congested, parking is horrific and the uneven sidewalks are a massive problem for my mom. I have made the executive decision to remove one stressful experience from my monthly routine. It was the best decision I have made so far because there is great comfort in returning to a place that has a history with you. 

Thursday, July 13, 2023

Thursday, July 13, 2023

Tonight's picture was taken in July of 2005. Mattie was three years old and FULL of energy. That year we took him back to the Outer Banks of North Carolina. On our journey to the Island, we always stopped at Morris Farms. They had amazing fruits and vegetables and eating freshly picked things made us start our vacation off on a special note. As you can see, Mattie enjoyed all the farm vehicles they had out front. That was the highlight of this stop for him.

Quote of the day: If you want the light to come into your life, you need to stand where it is shining. ~ Guy Finley

It was another winner of a day on the farm. The highlight of my upcoming days is that my lifetime friend, Karen, is coming to visit on Monday for several days. I view Karen as "fresh blood," and right about now my situation could use it. Karen has been a part of my life for over 40 years. Can you believe this? 

I can still remember the first time I spoke and meet Karen. Now I am NOT sure Karen and I have the same memory, as her memory is even better than mine. But back in sixth grade, our local town center, painted its store front windows for the Fall/Halloween. As students from our school, we were able to sign up to do this. 

Given that I was new to that school that year, my mom encouraged me to go. I believe I went with my friend Janice. However, when we got to our store front window, Karen was assigned to the storefront right next to us. Fate in a way! Her painting partner did not show up that day, so it provided the perfect opportunity for us to talk, get to know each other, and get involved in an activity together. To me that was our first encounter! I can remember painting so vividly. 

Life back then seemed so much easier and simpler. But perhaps that is the beauty of being 12! Through ups and downs, and a lot of downs, Karen has remained a part of my life. This isn't always easy with friendships, especially when geographically we are far apart from each other. But we make it work. 

It is funny how memories come flying back as I can also recall when I moved to California, after 9th grade of high school. Karen came out to Los Angeles for that summer of transition. Truly moving across the country was life altering, and Karen joining us in our new house, eased my angst! I am sure Karen can also recall that my bedroom in our new house had NO curtains or shades. So we made shades out of big pieces of paper. 

Honestly given my daily routine, I am hesitant on having visitors join our chaos. However, with Karen it is different. She knows what she is getting into and isn't afraid to jump in. 

Wednesday, July 12, 2023

Wednesday, July 12, 2023

Tonight's picture was taken in July of 2006. Mattie was four years old. It was Independence Day, and I will never forget that moment in time. Mattie's preschool buddy, Zachary, and his family invited us on their boat. We saw the National Capital fireworks show from the Potomac River. It was an incredible experience! It was my first and last time I ever did this. I have to admit I had MANY MANY firsts with Mattie. He brought great adventure into my life. 

Quote of the day: We should always pray for help, but we should always listen for inspiration and impression to proceed in ways different from those we may have thought of. ~ John H. Groberg

A day or so ago, my dad got a bug bite on his left hand. Because of his dementia, he fixates on things, and no matter how many times you tell him something, it just doesn't compute. So to make a long story short, my dad has scratched his hand raw. If you look at his hand, it looks like hot water fell on it. It is red, burned, oozing, and looks mean. In fact, my dad's memory care center called me on Monday to inquire about his hand. Apparently my dad told the staff that I put something on his hand, and then his hand turned red. Translation..... that I am the one who caused harm to my dad's hand. 

I had to address this and nip this in the bud ASAP. I explained to the memory care nurse that my dad is allergic to bug bites. Then he scratches them and makes matters worse. If you or I got a bug bite, it may last a day or so and be annoying, but it heals. Once my dad gets a bite, it can last for weeks. He then causes so much irritation from scratching, that the redness travels and spreads. There is not enough cortisone and other products I can put on him to resolve the situation. He leaves me no choice but to move to him wearing cotton gloves. Of course what did I see him doing this afternoon? If you guessed..... SCRATCHING, then you get a gold star. 

It has been a full day of managing both of my parent's needs. My dad's irritable bowel syndrome was acting up today, and as soon as I showered him and brought him downstairs for breakfast, he pooped in his pants. I had to change him yet again. I also took my mom to the hospital for her physical therapy session today. In today's session my mom was to show the therapist ALL the exercises she is doing at home. The therapist prepped us for this last week, thankfully, because for a week, I have been working with my mom to make sure she is actually doing the exercises and isn't making things up. The therapist is well aware of my mom's memory issues and confronted me about this two weeks ago. After all, if you can't remember what is going on in therapy, then going to therapy is counter productive.

So in the session today, the therapist asked my mom, what the session was going to be about! My mom didn't say.... 'to review my exercises.' Instead, she said, 'I am getting re-evaluated." WRONG! That happened last week. The therapist calmly and patiently explained that the evaluation happened last week. I was certain my mom would have gotten this right, since literally I have been working with her DAILY on her exercise routine. Any case, this afternoon, I confronted my mom about her memory issues. I am encouraging her to start to take dementia meds. She refused to do this when the neurologist suggested this in March, but now I am encouraging her to think strongly about this because I remind her that she did not listen to me about my dad. As I saw signs of dementia back in 2015. By the time we started my dad on these meds it was too late. My goal is to try to stabilize my mom's memory loss. So overall, it was another day in paradise here.

Tuesday, July 11, 2023

Tuesday, July 11, 2023 -- Mattie died 719 weeks ago today. 

Tonight's picture was taken in July of 2006. Mattie was four years old and that day he was invited to his preschool friend, Kate's birthday party. Now looking back at this photo, I can say with confidence that I know over 50% of the kids in this photo and still keep in contact with their parents. Mattie's preschool was a special place and it was in that school, that I made many strong connections. I suspect it was because of the developmental stage we were all in.... parenting young children, which is not for the meek. Mattie enjoyed his afternoon at Build a Bear and running around with his preschool friends. A day I won't forget. 

Quote of the day: The sun himself is weak when he first rises, and gathers strength and courage as the day gets on. ~ Charles Dickens

My dad was home with us all day. I did my usual morning routine and then at 10:30am, I jumped on a conference call. Mattie Miracle got funded in 2021, after winning a grant from Shark Tank, to start a therapy support program. This program awards children, teens, and young adults with childhood cancer money to seek mental therapy support within their community. We have a formal application and some requirements have to be met. We also award funds either directly to mental health providers, or reimburse families once they submit a paid therapy bill. To make a long story short, we are supporting two families now and today's call was about working with a third family. Our grants are open to anyone in the United States. Our current awardees are not located in our National Capital Region. 

When I jump on a conference call, I try to block out all the chaos in my life. My goal is to listen to the person I am speaking with and to try to help. Honestly I am proud of myself that I can still do this. While talking with this parent, what came to my mind was that these mental health issues have become a pattern and they have been around long term. Meaning they occurred even before a cancer diagnosis occurred. I couldn't help but put my clinical hat on and in the process, I think I provided this caring mom with another way of looking at the issues. So when I doubt I am using my degree, that my license is useless, I pause, and say ABSOLUTELY NOT! I wouldn't be able to have insights about certain issues without my education, training, and clinical skills. As I always used to tell my students..... when you get a degree and license, think creatively. There are all sorts of ways to use your skills and talents, and you just need to follow your passion and interests. 

Of course I never thought my life was going to turn out the way it did. If you would have told me in my twenties that I was going to have a child with cancer, and who would die, I wouldn't believe it! Frankly back then I did not even know children got cancer. What a place of bliss I was once living in, but the fuzz is now off the peach. No matter how stressed and over worked I am, Mattie Miracle is NEVER far from my mind and keeping Mattie's legacy alive is my number one job in life. 

I am proud to say that today was DAY TWO of my walking routine. After a full morning and afternoon with my parents, I went out at 4pm and walked until 5:15pm. Four miles later, I came back with a clearer head, calmer, more patience, and less anxiety. I am hoping I can continue this routine and carve this hour or so out for myself daily, because what I learned this week is that I NEED IT!

Monday, July 10, 2023

Monday, July 10, 2023

Tonight's picture was taken in July of 2007. This was classic Mattie in the bathtub. He could stay in there for hours, playing around, and this was his rendition of "Santa Mattie!" What a face and his antics will never be forgotten. I can't tell you how many toys Mattie would dump in the tub along with himself, I truly think he was all about playing and not about bathing. 

Quote of the day: Where words fail, music speaks. ~ Hans Christian Andersen

Today I learned that our dear friend Tim died from pancreatic cancer. Tim was our philanthropy contact at Georgetown Hospital for many years. Tim took an immediate liking to me and Peter and he devoted his time to reading the blog, learning about Mattie, and finding ways to support our cause. Tim was a fierce patient advocate and it is thanks to Tim, that he made sure we received Georgetown's Flame of Hope Award in 2014

You can see that there are many prestigious names attached to this award. We were the recipients in 2014, and to this day, this award sits in my office, proudly on display! This award will always mean a great deal to me, because I still consider Georgetown our medical home. 

In addition to the Flame of Hope award, Tim donated this paver to the hospital in memory of Mattie! This paver is at the front entrance of the hospital. Whenever I am at Georgetown, I always visit this spot. I will be forever grateful to Tim and can't imagine a world without this sweet, vivacious, humorous, and powerful soul. 

Hearing about Tim's death today, truly hit me hard. I felt he was sending me a message that..... I have to take care of myself. That I have to make time for myself in the day and if one doesn't take care of one's self, all sorts of things can arise. 

So this afternoon, after addressing all of my parents needs and having dinner prepped, I got on my sneakers and left the house! I had a migraine, felt very anxious, and could feel a panic attack coming on! So I knew I had to change my usual pattern. Walking! That is the only thing I have control over in my life, so I did it! I did not take my mom, I did not take Sunny, I just took myself out! 

I plugged into my phone and listened to Carly Simon. I am a big Carly Simon fan and I haven't listened to her music in years. I literally walked for three miles, and not slow sauntering, but speed walking, like I used to do in the city. For this walk, I felt more alive than I have in two years! With each step, I could feel anger, stress, and disillusionment slip from my head and body. 

One of the songs I heard was...... Coming around again (see below)!

Coming around again could have been written for me, but I have no doubt thousands of people relate to it! What it reminded me was that all things in life are temporary. Not to give up hope. Though I may feel depleted, depressed, angry, exhausted, and isolated...... caregiving, like cancer, has not altered who I am at the core. Thank you Tim (and Carly Simon) for reminding me that we all fall apart, but life does COME AROUND AGAIN!

Sunday, July 9, 2023

Sunday, July 9, 2023

Tonight's picture was taken in July of  2007. Mattie was five years old and that weekend we took him to Roosevelt Island. This is a place we visited practically every weekend. It brought all of us so much enjoyment. We visited this spot during every possible season and I feel a piece of Mattie's incredible spirit lies in this green space. 

Quote of the day: And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about. ~ Haruki Murakami

Tonight's quote is so poignant. There are many figurative storms in our lives, and some are much harder to cope with, manage, and recover from the devastation. However, it is so true, these experiences and traumas alter us. Whether we want them to or not, and the changes occur physically, emotionally and socially. Certainly some changes can be good and may cause us to grow and develop in ways we never thought were possible. But not all change produces positive results. Some experiences are so deep and affect every aspect of living, that it becomes impossible to return to the person we once were. I would say Mattie's diagnosis and death produced such life altering changes, and caring for parents with dementia on top of surviving childhood cancer is a bad bad combination. 

Have I changed as a person because of these two caregiving experiences? The answer is yes. Losing Mattie has impacted every aspect of my life and frankly I wasn't sure I could regroup and continue living. But some how I did. As a result however, I am far less social, I prefer more solitary time, I have trouble reading and processing information (especially if there is other noise around), and this is just some of the changes. Now add, caregiving around the clock for a year and a half without ONE DAY break, and I think this would alter anyone. Despite being exhausted and frazzled from meeting constant demands, at the core, who I am as a person remains the same.  

I have spent the weekend, playing with templates the artist left me. We have been trying to figure out how many paintings we want to display on this wall and once we figure that out, we will work on content. I have been up and down on a ladder all weekend. This was one of the options I generated and once up we live with it for a few hours we can easily say yay or nay. This eventually got a nay, as we all thought it was too busy. 

Then I tried this combination. My dad was watching TV, while I was playing with templates. This got a nay too!

Then I moved to this option, again, after a few hours, it too got a nay!

Then we landed up with this option. This option resonates with all of us. The problem is this wall is so huge that smaller sized canvases will get lost in this space. Any case, we will live with this for a few days and then determine the final verdict.