Saturday, October 21, 2023

Saturday, October 21, 2023

Tonight's picture was taken in October of 2003. Mattie was a year and a half old and at that point was zooming around our home. As you can see, he desperately wanted to grab a hold of Patches. Which was why Peter and I placed Patches pouch up high. No matter what Mattie did, Patches simply understood that she had to behave, she couldn't hiss or claw at Mattie. She was an amazing cat. This was a typical sight in our home though. Mattie loved pumpkins in the fall, and we always had a small collection going and of course, no photo would be complete without Mattie's sippy cup of milk. It was like his security blanket!

Quote of the day: The fact that something has happened to a million other people diminishes neither grief nor joy. ~ Author unknown

This morning my dad's physical therapist came over for his Saturday session. Two different therapists work with my dad. We met both of these women at the hospital, as they do private practice work too! In any case, today's therapist, also happens to be my mom's therapist. I absolutely love Cassidy, as we have worked together for the last two years, between my dad and my mom. In a way, she has become part of our weekly circle. My mom has her last session this coming week, and I will miss seeing this therapist on a regular basis. There is something about Cassidy that reminds her of me, when I was her age. 

In any case, I have been worried about my dad's decline and now today confirms what I suspected. Both physical therapists see what I am seeing. Cassidy told me that typically my dad can do a 45 minute exercise routine without a break. Not today, he needed to take three breaks. In addition, he could only go up and the down the stairs once. Whereas about a month ago, he could do this three times during one session. Needless to say, we see his rehabilitation doctor in two weeks, and I am going to have to have a conversation with him.

I took my parents to Rockville, MD. As we go to this restaurant every Saturday. In any case, the restaurant is fully decked out for Halloween!

Dawn, is our server, at this particular restaurant and she brought me fall flowers today. Mattie Miracle colors no less! These mums are very fragrant and the gesture of kindness is deeply appreciated. 

Of course no day would be complete for me without managing multiple bowel movements! When I drove home, I had to immediately get my dad out of the car because he had to go to the bathroom. Of course he did not make it and that meant another big clean up job. All I can say is, my parents are lucky I have a strong constitution. 

Meanwhile, the highlight of my day was receiving my blood test results from Friday. For six months, I have altered my diet to lower my cholesterol. I have been very successful and my doctor congratulated me. My first experience with high cholesterol happened right after Mattie was diagnosed with cancer. I was unable to manage what I ate, and ate a ton of carbohydrates (comfort food). Now with my parents living with me, my stress level is once again very high. But for me cutting out ice cream, bread, and cheese, always improves things and I am so glad in the midst of the nightmare I am balancing that I am able to be disciplined and also have committed to a walking routine (when I can). 

Friday, October 20, 2023

Friday, October 20, 2023

Tonight's picture was taken in October of 2003. Mattie was a year and half old. I know exactly why I snapped that picture! I was playing a Baby Einstein video for Mattie, but look at what he was doing instead! Mattie spent very little time glued to the TV. He was a busy little fellow. As you can see, he was pulling out his videos from under the TV and was looking at each of them. He loved to stack them, sort them, and put them back in the cabinet. Mind you, you would think that Mattie would had no idea what was happening on the TV, if he was stacking videos. However, I quickly learned that he could absorb what was on the TV screen and also do other tasks. He was my little multi-tasker!

Quote of the day: The life of the dead is placed in the memory of the living. ~ Marcus Tullius Cicero

It was another long day on the farm, juggling issues with the house, Sunny who won't eat, and of course my parents. Later in the afternoon, I took my parents out for an early dinner. While eating, music was playing. This particular Clyde's plays a lot of 70 and 80s music. Which is just fine with me, since this is my favorite music anyway! Needless to say, two songs by Barry Manilow came on. Those of you who do not know, I have always been a Manilow fan. To me there is nothing like music. It has a way of revoking memories and taking you right back in time. 

When I was in 6th grade, I distinctly remember singing a Manilow song in front of my class. Not for the fun of it, it was for an assignment. So I chose..... I can't smile without you. Years later, once I met Peter, I introduced him to many of these songs. Peter was a good sport, and came to love the music too. In fact, over the years, Peter and I went on countless car trips together. Not just an hour trip, but we are talking about sometimes 12 hour car trips because of traffic. On many of these car rides, Barry Manilow came along with us, sometimes we were even singing along (as Peter and I officially met in our college choir, we loved to sing).

Now life looks quite different. I feel like the music has gone out of my life, or perhaps when I hear these same songs, they mean something different to me. Though I never felt this way when listening to these songs in the past, now when I do, they seem to highlight regret, missed opportunities, and feeling lonely and isolated. To me it is ironic the power of music, because music hones in on how I am feeling, and it is hard when struggling with things not to hear and see things through my own lens of pain. 

But here's the thing, ultimately hearing these songs at the restaurant today brought a smile to my face. Because despite the lyrics, the music itself transported me back in time, to our car trips together, when life seemed simpler and more hopeful.

Thursday, October 19, 2023

Thursday, October 19, 2023

Tonight's picture was taken in October of 2003. Mattie was a year and a half old and this was his first experience at a fall festival. This festival had a petting zoo, and as you can see, Mattie got an up close and personal interaction with this sheep. To me this will always be a very precious and inquisitive photo, as both Mattie and the sheep looked like they were studying each other. 

Quote of the day: There are three needs of the griever: To find the words for the loss, to say the words aloud and to know that the words have been heard. ~ Victoria Alexander

After getting my dad up, showered, dressed, and had breakfast, I then got my dad settled in his chair and then drove to the hospital for a blood test. Typically parking is a challenge and I was preparing for a morning of stress. It turns out that parking was simple, the phlebotomist was fantastic, and I was in and out in less than 30 minutes. Even the commute back and forth to the hospital was easy. I figured this was a good sign for the rest of my day. 

Unfortunately my day truly unraveled out of control so much so that by this evening, I just couldn't sit still. Fortunately it was a lovely weather day, so I did lap after lap in the backyard. Of course I wasn't alone, my buddy, Sunny, was sitting down, watching and always in his own way lent support. 

Wednesday, October 18, 2023

Wednesday, October 18, 2023

Tonight's picture was taken in October of 2004. Mattie's preschool was celebrating Halloween. This preschool was NOT a good match for Mattie. I will never forget what a negative experience it was for him and me. As everyday, I would receive a call from the director of the school complaining about Mattie. After two months of attendance in the school, he was dismissed as Mattie bit the director and a fellow student. Needless to say, any time there were events or trips in that dysfunctional school, I volunteered and tagged along. In a way, if Mattie wasn't dismissed from this school, we would never have landed up at his amazing preschool in Alexandria, VA. It was fate and in a way, that second preschool transformed our life and social circle for the better. 

Quote of the day: Time heals old pain, while it creates new ones. ~ Proverb

I was sent this article entitled, In this Shadow Life of Child Loss. Typically, I have to admit that I rarely find articles, lists, and reflections much help to me. I didn't from day one of grief and now 14 years later, I would say I feel the same. Mainly because losing a child is so heartbreaking and each of us manage this pain in our own unique way.

This article did capture my attention for many reasons, but the bereaved author mentioned two things which I quoted below.................

"I remember being told that the second year is often harder than the first, and when year two rolled around, I was grateful for that knowledge because I thought I was either going insane or sinking into a bottomless pit. Well, we are quickly approaching our third year, and dear one, it hasn’t gotten any easier."

"At every holiday, you’ll be thinking about the past, the before. When everything was okay, and you and the Jones were living life to the full. Now, the Jones’ are still living large, but you maybe don’t feel like leaving the house. Your calendar may become strangely blank."

I wholeheartedly agree with the mom who wrote this article. I think it is vital to educate newly bereaved parents about the journey of grief. Our society programs us to think that after year one of such a traumatic loss that we are going to return to NORMAL! Of course when this doesn't happen, and instead we find that year two and three are almost worse than year one, we then think something is very wrong with us. Like this mom, I believe it is important to break this myth. I try not to scare bereaved parents, but I do prepare them that this WILL BE a journey, a journey that most people in their lives (including family) can't comprehend or even help and provide support.  

The second quote I highlighted from the article discusses holidays! Rather ironic, as I was just talking about holidays a few days ago in the blog. You would think I have been at this for 14 years now, that I have LEARNED the art of managing and coping through holidays. Certainly holidays aren't as raw as they were in the beginning, but in many ways when you are raw you find ways to protect yourself. It is only after enduring such a traumatic loss year after year, that a total level of confusion, disillusionment, and sadness becomes pervasive. They have a way of clouding your entire life, until (if you don't work on it) it eats you up inside. It takes a lot of introspection and reflection not to be bitter. Not to be jealous of friends and the world who have healthy and ALIVE children. Yet no matter how much you work on this and rationalize the irrational, our calendars are a lot less FILLED during the holidays. This is just plain and simple, it's our reality.

Tuesday, October 17, 2023

Tuesday, October 17, 2023 -- Mattie died 733 weeks ago today.

Tonight's picture was taken in October of 2003. Mattie was a year and a half old. Technically that was Mattie's second Halloween, because in 2002, he was just a baby and couldn't comprehend the holiday. I did not dress Mattie up in 2002, but in 2003, we went to Target together and picked out this cute pumpkin sweat suit. Since Mattie gravitated to the color orange and loved the softness of sweat suit material, I knew this would be a hit. He will always be the cutest pumpkin to me!

Quote of the day: Life is not the way it is supposed to be. It is the way it is. The way you cope with it is what makes the difference. ~ Virginia Satir

After I did some work this morning, I took my parents out to lunch. Typically we go to the same three restaurants. But today, we decided to go to the California Pizza Kitchen, which is close to our home. When my parents lived in Los Angeles, they would dine at their local CPK weekly. Both of my parents were hesitant to try a new restaurant here as they were worried about parking and access to the bathrooms. Their anxiety feeds on my own, but I figured it was early in the week, a cold day, and I decided to dine with them after the lunch rush. Even while driving to the restaurant, my mom suggested we not go! But I ventured there anyway, and secured a parking space right in front of the restaurant. As soon as we entered the restaurant, I scoped out the restrooms, because with my dad's irritable bowel syndrome, emergencies can arise at any time. 

Turns out my dad ate very well and my mom had a great time. Of course, no matter where I go and no matter what my dad eats, he has to run to the bathroom. Fortunately, unlike with my mom, my dad's bathroom issues don't make me edgy. I am not anxious about helping him, but I have to admit at times, I get frustrated because I can never eat a meal in peace. At the end of the day, I am happy that I introduced them to another restaurant and moved passed the small comfort zone. 

Over lunch we started talking about my parent's life in Los Angeles. Afterall, they lived there since 1984, and only moved in with me in December of 2021. So for my dad, LA should be memorable. Unfortunately it is not. He remembers very little about life there, his work, the places they visited, or any of their houses. It is a very sad commentary, given the fact that he used to be a force. Alzheimer's is a debilitating disease, but I would say the profound impact is more for the caregiver than the patient. 

When I got home and settled my parents, Sunny was begging to go out for a walk. So I put my jacket back on and out we went. I walked Sunny further than he has been walking in a long time. He managed, and we took it slowly. But Sunny's cancer has really done a number on him and there are days like today when I struggle to get him to eat ANYTHING. 

Look at this beautiful maple tree we passed along our Walk! It is the perfect symbol of Fall.  

It is rare, but today I retreated to my bedroom for a few minutes, to sit down and regroup. Look who joined me!!! Miss Indie. We rescued Sunny and Indie in 2016, and it was one of the best decisions I made since Mattie died. They are constant and loving companions. 

Monday, October 16, 2023

Monday, October 16, 2023

Tonight's picture was taken in October of 2004. Mattie was two years old. That year we went to Target together and Mattie gravitated to this Winnie the Pooh sweat suit! I knew getting him a costume would NOT have worked because Mattie had issues with tags and tight clothing. He preferred soft textures. Which was why the first several years his costumes were made from sweat material. In any case, I thought he made the sweetest looking Pooh! Notice the little pumpkins behind him. Mattie loved to collect these orange cuties and of course the Mattie telltale sign was.... he was carrying a toy train in his hand! He was never empty handed.

Quote of the day: I will welcome happiness for it enlarges my heart; Yet I will endure sadness for it opens my soul. I will acknowledge rewards for they are my due; Yet I will welcome obstacles for they are my challenge. ~ Og Mandino

Tonight's quote truly made me laugh! I think if I am given one more obstacle in life, I will lose it! Figuratively and literally. Do I think obstacles make us uncomfortable, challenge thinking and feelings, and force us to change? Yes but as I always say...... NOT all change is positive and for good. 

Mattie's cancer was ONE VERY LARGE OBSTACLE. Managing and coping with Mattie's care in the hospital on a daily basis for 14 months was harrowing. It didn't provide me with one challenge, it provided me with thousands. Some obstacles arose on the hour or minute by minute. Making it close to impossible to process what was going on, much less learn from it. I would say, 15 years later, I am still working my way through this life altering loss. A loss that most can't or won't comprehend. 

What I do know, is from childhood cancer, I learned what needed to be done to help and assist other children and their families. I use these life and death obstacles to try to help others and in the process, try to put into context the fact that I lost Mattie. A fact that doesn't diminish with each passing year. 

Today, after dropping my dad off at the memory care center, I took my mom to the city to go to the salon. I am so thrilled I changed salons and have returned to the one closer to my townhouse (when I lived in the city). This salon holds fond memories for me as does my former neighborhood. Going to this salon is so much easier, as parking is simple, and there are no cobblestones for my mom to walk on! While at the salon, I had the opportunity to chat with my manicurist. I have known her since 2009, when Mattie died. We have shared many ups and downs together and today, I got to see another side of her. Each time we meet, we can talk for two hours straight with no problem. Needless to say, I thought I knew everything there was about her. But today we talked about the value of forgiveness. Forgiving those who hurt us and how to move forward once you have been emotionally hurt. 

I found her insights into her own life fascinating, and after our talk what I concluded with her is that it actually takes MUCH MORE strength to love and forgive than it actually does to have hatred and anger. Any case, while in the salon, I forget about my own problems and for two hours, while my mom was occupied, I had meaningful chats, with people I have known for decades. 

Sunday, October 15, 2023

Sunday, October 15, 2023

Tonight's picture was taken in October of 2004. Mattie was two years old. Though we had taken Mattie to Fall Festivals the year before, in 2004,  was his first time going down these large slides! Mattie was a lot braver than me because there would have been no way I would have done this at age 2. Of course, I don't think Mattie would have tried it if Peter wasn't with him. Mattie sat on Peter's lap and they went down together. Needless to say, once Mattie tried it, he was hooked on the fun. 

Quote of the day: You will lose someone you can't live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn't seal back up. And you come through. It's like having a broken leg that never heals perfectly - that still hurts when the weather gets cold, but you learn to dance with the limp. ~ Anne Lamott

As we move through October, I realize November and December are fast approaching. The notion of the holidays are absolutely sickening to me. I truly dread this time of year, and this year, my feelings seem much more raw and uncontrollable than ever before. I would have hoped that I would have come to terms with holidays by now, but unfortunately the sad reality is I haven't! 

I think in 2021 and 2022, I rose to the occasion because my parents are living with us. I figured decorating would orient them to the season and the holiday. I tried my best, but the unfortunate truth is my dad can't remember one moment to the next and my mom isn't far behind. Honestly they were my reason for acknowledging the holidays in my house, but this year, I am pausing and wondering.... what do I do? I know I have time to think about it, but it is one of a thousand things weighing on my mind. 

Basically the reality is I wish Mattie were alive. I could use him in my life now, more than ever. We understood one another and he was a very loyal and devoted fellow. We just did not have enough time and holidays together and no amount of reflections and memories can fill the void that his loss leaves behind. 

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.