Saturday, October 14, 2023

Saturday, October 14, 2023

Tonight's picture was taken in October of 2006. Mattie was four years old. That year, we made his calico cat costume together. He was so excited with this creation. I remember we went to Target and bought a black sweat suit and then we went to AC Moore and bought felt for the cat's patches. Mattie loved the whole process. Unfortunately that year he never wore his costume on Halloween and didn't go trick or treating. Instead, he landed up in the hospital for days with and ear infection that turned to sepsis. Mind you I brought Mattie to the pediatrician two days before hospitalization and I told her I thought he had an ear infection. She did not take me seriously and labeled me as a neurotic parent. But in the end, I was right, and when she visited us in the hospital, she actually apologized to me! Fortunately the costume was large in size, so Mattie got to wear it in 2007, and it fit perfectly that year!

Quote of the day: Tears have a wisdom all their own. They come when a person has relaxed enough to let go and to work through his sorrow. They are the natural bleeding of an emotional wound, carrying the poison out of the system. Here lies the road to recovery. ~ F. Alexander Magoun

Tonight's quote captured my attention. For the most part, I don't cry. I can tear up, but full blown crying isn't my thing. Or let's put it this way, it hasn't been my outlet since Mattie was diagnosed with cancer. It was like a switch flipped in my brain, and now my brain and body are programmed for stress, anxiety, and to remain emotionally strong. Now all that said, the quote is 100% correct, I can manage in this stoic state for just so long. When things calm down in my life (if that ever actually happens!), and I begin to relax, then all hell breaks lose for me. It is at that point that I will be an emotional puddle. In fact, for me it is a lot easier to stay in the state where the emotional barriers are up, because in that state, I can get the things that need to happen in my house accomplished. 

This morning, while having breakfast, I sat with my dad and generated six questions for him to ask the server we see every Saturday! If I don't help him with questions, then he asks this woman the same two questions OVER and OVER during the meal! So I wrote down questions in his notebook. About 40 minutes after we had breakfast, his physical therapist came over for a session. While she was there, I left the house. I did some chores, but it was nice to have this time and space alone. 

Fast forward to the restaurant. While seated, I asked my dad to take out his notebook so he could look at the questions he wanted to ask Dawn. When he opened to today's page, don't you know it.... he had the questions answered already! I was perplexed, how did that happen? So I asked him, whether he answered them as if he were Dawn. He had no idea. I looked at the responses to the questions and what I deduced was he had asked his physical therapist the questions meant for Dawn. It's hysterical! Mind you my dad has NO MEMORY that he asked his therapist the questions and he also couldn't separate answers today given to him by Dawn versus those given to him by the physical therapist. In essence he can't manage multiple forms of information at one time. It was fascinating to me to see his profound level of confusion, which gives me further insight into his Alzheimer's. 

I photographed our front door tonight. Our house is filled with pops of orange colors! I think Mattie would approve. While at the grocery store today, I bought this cute pumpkin. Pumpkins remind me of Mattie too. The past two Falls at our house, we decorated the front yard with about 15 smaller pumpkins. I wasn't in the mood for that this year, so this single orange fellow will do!

This is a close up of our Fall wreath. I made this wreath in 2021. I will never forget going to Michael's, picking out items and then coming home and designing this creation. I used to love my strolls through craft stores and making things for others, it was fun and I feel it brought me my own form of happiness. 

Friday, October 13, 2023

Friday, October 13, 2023

Tonight's picture was taken in October of 2005. Mattie was three years old. This was CLASSIC Mattie! I have no idea why, but he loved to paint with his feet. It was rather ironic, since as a toddler he strongly disliked sand and water. He wasn't a fan of the sensation. But when it came to paint, the messier the better. I can't tell you how many cards and other creations we made from Mattie's talented feet! Now looking at this, I am sure you think that paint got everywhere! But Mattie understood that he needed to stay on the drop cloth! When he was done painting, he'd put his hands up in the air and I would carry him to the kitchen sink to get cleaned up! We were quite a team.

Quote of the day: There is no grief like the grief that does not speak. ~ Henry Wadsworth Longfellow

My dad did not go to his memory care program today because I had to take him in the early afternoon to his foot doctor appointment. Not running around this morning, enabled me to focus on Foundation work for just a bit of time. Gone are the days when I used to spend hours in front of the computer, making professional connections and feeling involved in something larger than what's going on inside my home. 

But with caregiving, it takes on a life of its own and becomes all consuming. I learned this first hand at many points in my life. When my grandmother had a stroke while I was in college. Her illness was an eye opener for me at a young age, and I saw the debilitating consequences of caregiving on my mother's health. After all, when I was in college, I learned my mom was rushed to the ER and was admitted to the ICU, for WEEKS! Her nurse told me to come home from college because she may not make it. She contracted sepsis and it was clear this was because of being worn down physically from caregiving, which ultimately compromised her immunity. 

From that lesson, I then learned the challenges of motherhood. Add to that having Mattie diagnosed with cancer and then dying. Now I am once again in the throes of caregiving, for my aging parents. Each of these caregiving journeys has influenced me, changed my view of the world, how I see the people around me, and most importantly, I see the research that I conducted so many years ago on caregivers, playing out in my own life. 

This afternoon, I was sent this photo from the SIOP conference in Ottawa, Canada. This researcher is from Austria! Look closely at the screen. You may need to click on the photo to enlarge the image. 

Long story short.... it features our Psychosocial Standards of Care, with Mattie's 'Mr. Sun' painting on the front cover. In fact, along with the message today, was sent this caption....

"Look at what a WORLDWIDE impact Mattie is making!"

After a full day of running around, I took Sunny out for an evening walk. There are several things I love about evening walks. The first is most people are inside. So there is more peace and quiet. Second, I like seeing lights. I am not a big Halloween fan, but many houses have their decorations out. I will have to go around the neighborhood and snap some photos, because I see more ghoulish stuff this year than I remember in the past. 

I love seeing the pumpkins and all the orange, but could do without the fake tombstones and coffins!

Thursday, October 12, 2023

Thursday, October 12, 2023

Tonight's photo was taken in October of 2005. Mattie was three years old. That day we were headed to a Halloween event at the University. Several of my students were helping to coordinate this community wide trick or treat, and they invited Mattie to attend. He got dressed up in his calico cat costume that we made together and Peter snapped this photo of us walking to the event. Mattie had a great time participating in all the fun and games and came home with several children's books of his choice! A day I will never forget! If I could only turn back time. 

Quote of the day: Grief is like a moving river, it's always changing. I would say in some ways it just gets worse. It's just that the more time that passes, the more you miss someone. ~ Michelle Williams

Today was one for the books! While showering my dad, I noticed his left side by his rib cage was swollen. I took several photos and sent it to the doctor. I figured it was a hernia, but wanted the doctor's opinion. He responded right back. Basically he told me that if it isn't bothering my dad, not to worry! One thing off my plate!

I drove my dad to his memory care center. When I was about to get him out of the car, I noticed that his walker wasn't anywhere in the car. He can't move an inch without it. So I had to seatbelt him back in the seat and returned home. Don't you know it, I literally left the walker in the garage, right by where the passenger side door was located! I am that tired and frazzled. Once I loaded the walker, I drove my dad right back to the center. Thankfully it is only 10 minutes from our house.

Once my dad was securely inside, I went grocery shopping. While I was putting away the groceries I could hear a delivery truck leaving boxes by our door. My mom had ordered a few items that she wanted (one in particular, she wanted before they moved from Los Angeles). One of the items was super bulky and heavy. Literally heavier than me! How I managed this and got it into the house is beyond me. That I didn't injure myself is one for the books. 

My goal was to work on Foundation things this morning, but it never happened as I got derailed with boxes! Therefore, I have decided I am going to stay up later a few nights to get the things I want done. If I don't do this, then I can't have quiet and a minute to myself. 

This morning, I was text messaged this photo! Mattie Mattie was highlighted in this conference presentation, which was given at the SIOP (International Pediatric Oncology Congress) conference in Ottawa, Canada. We are proud to sponsor Lydia's work! Love seeing that Mattie Sun getting around. 

It was a day of many firsts for me. Tonight, Sunny and I went outside and while Peter is in Boston visiting his family, I decided to figure out how to put up our pumpkin inflatable. Peter gave me some pointers and low and behold, I did it! 

Sunny and I had plenty of outdoor time this evening, as we went for our daily walk together and then we spent some time out front. I find one of my favorite places to be is outside. Mattie definitely rubbed off on me, as I wasn't like this before he was born. 

Wednesday, October 11, 2023

Wednesday, October 11, 2023

Tonight's picture was taken in October of 2006. It was a fall tradition where we would take Mattie to Fall Festivals. That day, Mattie went into one of the moon bounces at the fair. In some ways, Mattie was like me. He was cautious and analyzed things before jumping. However, unlike me, Mattie loved motion and the crazier it was, the more he loved it! 

Quote of the day: As long as I can I will look at this world for both of us. As long as I can I will laugh with the birds, I will sing with the flowers, I will pray to the stars, for both of us. ~ Sascha

 

I find my mind and heart are filled with so many thoughts and emotions these days, that it is hard to stay focused. After managing both of my parents needs, I could have moved to more chores and work this afternoon. But I didn't! I decided to stop and get outside and walk. 

Walking is my therapy and it has been for a long time. I learned that early on after Mattie died. Soon after Mattie died, I developed panic attacks. Of course I did not realize what they were so I went to see my primary care physician, who of course sent me to a cardiologist. I wore a heart monitor for days and I honestly thought I was going to lose it mentally. The monitor made me super anxious. Mainly because back then they were clunky devices that you had to press a button every time you felt a symptom. By the time I was done with that machine, I thought I would need medication just to calm down. 

But after getting a clean bill of health, we concluded that I was having panic attacks. There are various ways to cope with this, but what I found worked for me was WALKING. When I say walking, I mean I could walk around 10-15 miles each day. I needed to do this to manage the intense anxiety I was feeling and what I found was walking quieted the negative self talk in my head. It got me in touch with my breathing, it connected me to the outside world, and forced me to be present. 

Now I am trying to recommit to walking and not just walking for myself, but for Sunny too. Though Sunny has been depleted because of chemotherapy, I still believe he too can benefit from movement. Ironically, it didn't take him long to fall back into the pattern of walking and he looks to do this every afternoon. This was our routine together when we lived in the city, and I attribute our daily walking for the reason we are bonded and so close. 

This shell dish was given to me by Peter for our anniversary this year. To me it is symbolic of all the times we traveled to the beach together and collected shells. For the past two weeks, when I walk with Sunny, I look for an acorn with its cap on it. If it doesn't have its cap, I don't bring it home. This was something I used to do with Mattie all the time, and wow did he have a big collection. Any case these acorns sit by my kitchen sink, so I look at them and reflect on them daily.  

Tuesday, October 10, 2023

Tuesday, October 10, 2023 -- Mattie died 732 weeks ago today.

Tonight's picture was taken in October of 2006. Mattie was four years old. I am sure I decided to snap this photo back then because of the eclectic nature of Mattie's clothes. He literally decided to put clothes on top of his pajamas. For no apparent reason, other than why not? There were many unexpected moments of laughter with Mattie. He had a mind of his own and I learned as his parent to embrace his strong will and appreciate the many gifts and challenges he added to our lives. I wish he were alive today, as I could use his strength, force, and loyalty. 

Quote of the day: You can clutch the past so tightly to your chest that it leaves your arms too full to embrace the present. ~ Jan Gildwell

Tonight's quote may be exactly true, but given a choice, I much rather live in the past than contend with the present. Nothing makes sense to me, everything from my daily life to our world at a global level. The pain and destruction that people can cause to one another, is beyond what my heart and mind can actually absorb. Therefore, I much rather focus on the past, when I was an intact family of three, who had their whole lives ahead of them. This is my mood for today!

Monday, October 9, 2023

Monday, October 9, 2023

Tonight's picture was taken in October of 2006. Mattie was four years old. Mattie carved a pumpkin in preschool that day and was very proud of his creation. Which was why I snapped a photo of him with this orange cutie. From a very early age Mattie gravitated to the color orange. I have to admit, I was never an orange fan. But Mattie changed all of that for me and now it is one of my favorite colors. 

Quote of the day: Given a choice between grief and nothing, I'd choose grief. ~ William Faulkner

This afternoon, after a full day of chores and managing my parents, I decided to leave the house and took Sunny with me. We went on a walk together. Poor fellow! Sunny has the spirit and desire, but physically he is very challenged walking. I don't push or drag him. We take our time together and what I have learned is by moving at his slower pace, it gives me more time to pause and notice the world around me. Typically when I walk, I am moving quickly. So quickly that I may not be observing what's around me in totality. In the world that we live in now, reconnecting with nature, beauty, and the value of life is more crucial than ever. 

But here is it.... Sunny is helping me once again! Sunny came into my life in 2016. Life after Mattie's death has been impossible at time. But I would say Sunny is a consistent bright spot in my life. He is loyal, loving, and my companion. I certainly miss the walks we used to do in the past, where we could walk for 5-8 miles at a time. Those were the days, when we walked around the National Mall and explored the historic sites and beauty of the city. Life seemed simpler then, living with so much grief. But once again, when I am faced with great stress, sadness, and anxiety, I turn to walking. Walking with my buddy. Thank goodness for Sunny!

On our walk today, Sunny happens to love sniffing and exploring a bank of pine and oak trees. These were two of Mattie's favorites. I am not sure it is a coincidence that Sunny loves the same trees as Mattie. In any case, while Sunny was checking out the trees, I decided to collect acorns. Not unlike what Mattie used to do! I can't tell you how many acorns Mattie collected over the years. In fact, he would collect them and give them to special people in his life.... as gifts! I distinctly recall that Mattie's occupational therapist would receive an acorn in the fall each week! She must have had quite a collection going from us. Mattie may not be walking with me literally, but as I appreciate the acorns and pinecones, I remember my moments as a mom and feel that these gifts from nature continue to keep us connected. 

Sunday, October 8, 2023

Sunday, October 8, 2023

Tonight's picture was taken in October of 2006. Mattie was four years old. This was what our October weekends used to look like! We would select a different fall festival each weekend to visit. As Mattie got older, he loved the slides and other fun adventures that these fairs provided. As you can see, we LOVED this giant pumpkin, and Peter snapped a photo of us in front of it. This is one of my favorite photos, and it sits in my office today. 

Quote of the day: Tears are sometimes an inappropriate response to death. When a life has been lived completely honestly, completely successfully, or just completely, the correct response to death's perfect punctuation mark is a smile. ~ Julie Burchill

I am not sure where I sit regarding tonight's quote. But clearly if examining Mattie's life, he did not 'live completely' nor did he live 'completely successfully.' So in my case, there is NO perfect punctuation, and certainly NO SMILE! 

I went on two walks today. The first one was with Sunny. Though Sunny is unable to do much walking, I am trying to take him out daily. I know how much he loves it and with each walk, I am trying to build up his stamina so I try to increase the distance with each walk. Sunny loves the cold weather months, so I have a feeling it will be easier to get him up and walking. All I know is he loves his time to explore and he also loves connecting with me. As I do with him! Since my parents moved in I have skipped Sunny's walks for months. Maybe for even a year. I think it was the combination of Sunny's decline on chemotherapy and my non-stop work helping my parents. But my commitment to myself is to get outside, absorb my green space, listen to music and walk. This is something I still love to do, and believe me my list of what I love to do has now dwindled. 

This afternoon, I took my parents out to brunch. We visit this same restaurant every Sunday and I have come to love our server and know many of the managers at the restaurant. While dining, I heard two songs that stopped me in my tracks. There is nothing like music! It can transport me back in time, and I can recall the feelings each time I heard these songs for the FIRST TIME.

The first song I heard today, was introduced to me in 1986. I moved to Los Angeles with my parents in 1984. It was a very hard move, as I was about to enter high school. All the kids at my school already knew each other, and therefore, I was the odd one out! Around this same time, the movie, The Karate Kid came out in theaters. It was as if this movie was written for me! It was about a kid who moved from the East coast to Los Angeles. At school he got teased and didn't fit in, and of course longed to return home. As silly as this sounds, this movie got me through a very hard time adjusting to a new home, school, and state. To this day, whenever I hear any of the music from this movie, I am transported right back to the 1980s! Which was where today's song by Peter Cetera (the Glory of Love) comes in. When I heard it, it was like I was a teenager once again and could feel all the same emotions I had back in the 1980s and at the same time the happiness and comfort this song brought me for decades. In fact, whenever I would hear this song playing, I would say to myself..... something good or positive is going to happen! Funny, no? I did this for decades with this song. 

The Glory of Love.............................

The second song that I heard today was Time of My Life. This song takes me back to my college days! This song was in the movie Dirty Dancing, which was released in 1987, my first year of college. Again another social adjustment. However, I was a lucky person, because in school, I found great like minded friends. One Friday night all my friends got together to go to the campus theatre, and what was playing was Dirty Dancing. I have always loved music and dance, so the fact that there was both in this movie, made it a winner for me. Needless to say, all of us were absolutely taken by the movie, and we loved it so much that we stayed for the second showing! So when Time of My Life played today, I was transported right back to Union College, surrounded by friends, and at a time when I thought I had my whole future ahead of me. Thankfully I had no idea what the future would actually hold for me, because it has been anything but a time of my life. 

Time of My Life..........................