Saturday, September 23, 2023

Saturday, September 23, 2023

Tonight's picture was taken in September of 2007. Mattie was five years old and that weekend, Mattie was visiting Peter's parents in Boston. All the cousins went out on a boat together for a tour around the harbor. As you can see, Mattie was right in the mix and loved the adventure. 

Quote of the day: In times of grief and sorrow I will hold you and rock you and take your grief and make it my own. When you cry I cry and when you hurt I hurt. And together we will try to hold back the floods of tears and despair and make it through the potholed street of life. ~ Nicholas Sparks 

Since January of this year, Peter has been working on losing weight and exercising. Slowly he has built up to being able to run for over an hour, and runs practically everyday regardless of the weather. Today he participated in his first 10k. He successfully completed a 5k on Father's Day. 

I have never been an long distant runner, so the fact that Peter is able to achieve this is remarkable in my book. Today was damp and pouring rain, yet he managed and came back energized. 

Peter ran with our neighbor, who is also a runner. Dave snapped a photo of Peter!

If you click on this photo, you can see that Peter placed #5 and did this race in 49  minutes. Amazing!

Meanwhile for me, today I hit another low. It has been a red letter week for me. Before we left the house, my dad had two large bowel movements. Honestly you would think he would have nothing left to give! I should be so lucky. At lunch my mom was peppering me about so many things. At times she becomes so overwhelming that I literally have to tell her to STOP talking. Unfortunately my commentary never stops her. I live in a high stress environment in which everyone likes to take their unhappiness and frustrations out on me. I am ONE person and I truly can handle just so much, but that doesn't stop anyone. Do any of them want to hear about my thoughts and feelings or help me? The answer is no. 

It was so unpleasant at the restaurant table, that I got up and walked away. I went outside, stood in the pouring rain, and tried to regroup. If this was the extent of my lunch that would be bad enough, but my dad had two big bouts of diarrhea at the restaurant. All over himself, me, the floor, and the toilet! There was no amount of hand washing that removed this smell from my hands. Of course 30 seconds later my dad forgot that any of this happened. But I can't! So between runs to the bathroom and being made to feel like I am responsible for everyone's stresses, I am on overload. 

Friday, September 22, 2023

Friday, September 22, 2023

Tonight's picture was taken in September of 2007. That day we took Mattie to the old Nationals park to see a baseball game. Peter loved the sport and I think he was hoping Mattie would gravitate to it as well. However, in this department Mattie was JUST LIKE ME. At a stadium we are more interested in people watching and the food. 

Quote of the day: Some people come in your life as blessings. Some come in your life as lessons. ~ Mother Teresa

Tonight's quote caught my attention because in Mattie's case, he was both! He was a blessing and taught me many life lessons. I would say that every aspect of Mattie's existence has shaped my current life. Everything from what I advocate for, to the work that I do, my passion to help others, and of course I credit Mattie for bringing the gifts of many amazing friends to my life. 

Today at the memory care center, the theme was...... dress in your favorite team's colors! I had to really think about this with my dad as he wasn't a big sports enthusiast! However, my dad did love basketball and when he lived in Los Angeles he attended several Lakers games. Literally he got seats right on the court and I remember as a teenager, he would tell me that players sometimes fell right into his lap. Basically they were so tall that the players' knees were at eye height with my dad who was sitting!

Any case, I am not sure my dad appreciated team color day, but he loved his new sweat jacket. My dad runs cold now, so all jackets are appreciated. He got lots of compliments today on how good he looks in yellow! Who knew!?

After running around today and doing a ton of chores, cleaning, laundry, and cooking, I found these yellow beauties at my front door! I knew immediately that they were from a Team Mattie friend! I say that because Team Mattie knows my love affair with sunflowers. Thank you Carolyn and Ellie for brightening up my day and week! Mattie died in 2009, but the love and support of Team Mattie is alive and well. This kindness and thoughtful community we have doesn't go unnoticed or unappreciated by me. 

Thursday, September 21, 2023

Thursday, September 21, 2023

Tonight's picture was taken in September of 2007. I will never forget this moment in time. That day we went over to Zachary's house. Zachary and Mattie were best preschool buddies. They were absolutely inseparable. Through their friendship, I got to know and love Zachary's nanny, Sara. Sara was a natural with children, truly a loving, caring, and nurturing soul. As you can see, Sara had a baby of her own, and that day we went to meet Sara's baby. Both Mattie and Zachary were fascinated with the baby and they both got to hold him. It was precious and tender to see these boys bond with the baby. 

Quote of the day: We do not have to rely on memories to recapture the spirit of those we have loved and lost – they live within our souls in some perfect sanctuary which even death cannot destroy. ~ Nan Witcomb

Sometimes I feel like I am absolutely drowning with my day to day tasks. My dad's decline continues and his incontinence to bowel movements gets me down. But overall, I would say that leaving our home in Washington, DC and moving into this house in Northern Virginia has been a less than pleasant experience for me. One would hope that in one's own house, I could feel relaxed, that it would be a haven, a sanctuary. But nothing about my home is peaceful. I do not feel bonded with neighbors or the community and when my parents are no longer with me, I will be exiting this neighborhood as quickly as possible. I deserve to be in a place and space where I feel comfortable, appreciated, and part of something bigger. I have a lot to say on this matter, but given how upset I am now, I am keeping it to myself. 

The highlight of my day was an email exchange I had with my friend Carolyn. Carolyn and I have known each other since 2005, when our children were in the same preschool classroom. I always loved Carolyn's daughter (Ellie). Mattie went to a co-op preschool, which meant I had the opportunity to assist in the classroom practically once a month. Overall, I would say that not all children connect with me, I am better with adults. But Ellie and I had a special friendship right from the beginning. It is hard to believe Ellie is now a young woman. Afterall, Mattie is still 7 to me, and I expect his friends in some way to also be stuck in time! Of course that isn't reality. In any case, many of you who have attended our Foundation Walks know Carolyn, as she has been our Raffle Chair since our first Walk in 2010. I truly value Carolyn's commitment to the Foundation and I appreciate my connections with Ellie. In fact, I love being a part of her life journey. I have lost touch with so many of Mattie's friends, for one reason or another. This of course saddens me, which is why the friendship I have with Carolyn and Ellie is quite unique and noteworthy. In any case on yet another difficult day, I truly am grateful for the friends who stand with me over all these years.  

Wednesday, September 20, 2023

Wednesday, September 20, 2023

Tonight's picture was taken in September of 2007. I remember this day as if it were yesterday. It was the first day of kindergarten. That was a big deal because it was a FULL day of school. Mattie's preschool was only three hours long and he only went three days a week. Kindergarten was the first real time that we were away from each other for a chunk of time. Any case, before we left for school, I had Mattie pose on our deck. I wanted to capture that moment in time and truly at that point, I thought I would have many more first days of school! I would never have guessed that it would be our first and last together. 

Quote of the day: When someone you love dies, and you're not expecting it, you don't lose her all at once; you lose her in pieces over a long time - the way the mail stops coming, and her scent fades from the pillows and even from the clothes in her closet and drawers. Gradually, you accumulate the parts of her that are gone. Just when the day comes - when there's a particular missing part that overwhelms you with the feeling that she's gone, forever - there comes another day, and another specifically missing part. ~ John Irving

It was pajama day at my dad's memory care center. This week they are celebrating the staff and participants of the center and with that, they are doing themed days and fun activities. The conclusion I have come to is that it is hard to find cute pajamas for men. You can do so much more with women's pajamas and reflect the fun day with a hairstyle and so forth. 

In any case, I did put a flannel pajama top on my dad and snapped a photo. Photos are important because it helps as a reminder for my dad! Even while my dad is wearing the pajama, he is truly disoriented at times to what is going on around him. Honestly the decline in my dad is so stark, given the bright and witty person he once was, it can be hard to take!

While my dad was at the center, I spent some time working on the computer today! A real rarity. But I have a Foundation newsletter that needs to go out next week, and unfortunately it doesn't write itself. After working a bit, I took my mom to CVS, as she wanted to get some things for her and my dad. What I have noticed is that managers where ever we go (you name it.... pharmacy, clothing store, doctor offices, restaurants), have gotten to know us. Of course you can't miss us, as I am typically juggling a ton of bags and holding or guiding both parents in each of my hands. I am very appreciative of the kindness of those I have met in the service industry and in so many ways they brighten some difficult days for me. 

When we picked my dad up at his memory care center, my mom started in on him again about what he did today! He looked to his pocket notebook, and as usual he did not write anything down. This same routine has been going on since March of 2022, when he started the program. The only thing this dialogue accomplishes is aggravation and anger. So I finally said to my mom in the car that we have to drop this conversation. My dad can't remember what he does from one minute to the next. We have to be okay with this reality, despite the fact that we want him to work on memory strategies, he either can't or isn't interested. 

I have come to this realization about a month ago! I have been trying to stimulate my dad's brain with reading passages, games, puzzles, and his daily logs. But finally I had to let all of this go. I can't want something for him that isn't doable or possible and certainly if it has no benefit or brings him happiness, then it needs to be eliminated, and I have! Again, another sad reality on just so many others. 

Tuesday, September 19, 2023

Tuesday, September 19, 2023 -- Mattie died 729 weeks ago today.

Tonight's picture was taken in September of 2008. We were in New York City, in order to consult with another cancer institution about Mattie's treatment plan. In between appointments, we went touring around the city. As you can see, we took Mattie to the famous FAO Schwarz. I would say this was about the only thing that day that made him smile! 

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

At noon, I took my parents to the pharmacy so we all could get flu shots. Prior to my parents moving in with us, I never got a flu shot. I found in the past that this shot would make me feel so sick that I was unable to function for days after receiving it. However, now that I need to be healthy and function, and my parents are frail and my mom is immunocompromised, I decided last year to get the flu shot annually. I figure even if I get the flu now, perhaps my symptoms will be more mild. 

I honestly did not know whether we were going to make our noon appointment on time given that my dad was running to the bathroom with diarrhea. His bowel movements yesterday were so intense, I would have thought that he wouldn't go for two days or more. But that isn't how his system works. Of course while I am running around doing all the chores, tasks, and caring for everyone, my mom was complaining. Well that is until I started screaming at her. Truly sometimes the only way to get her to STOP with her lament is to scream. I don't like doing it, but she has a real lack of insight into her behavior. 

We did get the shots and almost immediately my mom and I got intense head pain. I am used to daily headaches, so I plowed through that feeling, but it was noticeable and it lasted for several hours. I truly felt like my head was in a vice and I felt foggy at the same time. Whereas my dad has developed nausea and I am monitoring him even now at 6pm in the evening. 

While I am typing this, both of my parents are resting and seem wiped out. I of course do not need one more thing to knock me out. So my goal is to dial it back tonight and try to have a slower evening. 

Monday, September 18, 2023

Monday, September 18, 2023

Tonight's picture was taken in September of 2008. It was Mattie's second month on treatment, but it was before any of his limb salvaging surgeries. Therefore he was able to stand and walk around. He was far more independent at that point in time. Which was a good thing, as adjusting to life in a hospital and being on high dose chemotherapy was not for the meek. As you can see, Mattie could do a lot with all the items and gifts he received. In this particular case, he built a tower out of markers. I can't tell you all of the things we worked on, played with, and used to keep Mattie busy, engaged, and with diversions from the cancer reality. 

Quote of the day: Happiness is beneficial for the body, but it is grief that develops the powers of the mind. ~ Marcel Proust

This week is apparently "Adult Day Services Week" at my dad's memory care center. This week honors all of the staff and participants, and there are fun themed days and activities. Today's theme was HAT DAY! I don't think my dad really wanted to participate, but I decided to have him wear a hat that was light weight and wouldn't bother him throughout the day. 

At first I was thinking of a humorous hat, or one of my hats, but then I figured, he should wear something that belonged to him. This barrette was actually my dad's! Once I put it on his head, I had him look at himself in front of the mirror. He saw himself and laughed! I told him he was channeling his inner Monet! When he got downstairs, I snapped this photo before he had breakfast. I am so glad I did this, because I have been showing him this photo all day long. My dad had no recollection that a hat was on his head, he did not realize it was hat day, he did not observe others wearing hats, and he also said no one commented on his hat. 

I know for certain that two out of the three are false. When I dropped my dad off this morning, the woman who helped him inside commented on his lovely hat and thanked him for a wearing a hat in honor of Services week. Of course once my dad goes inside, I have no idea if hats were being discussed or whether others commented on his hat. In addition, through the glass windows, I could see many other participants and staff members wearing hats. So though my dad doesn't remember seeing hats, I know that doesn't mean it didn't happen! I try to remind him of this and I am well aware that his memory span is about 30 seconds. I am not trying to be funny, I am quite serious. 

While my dad was at his memory care center, I drove my mom to the hospital for her physical therapy session. The therapist is great with my mom, but both she and I know that my mom's memory is very challenged. The therapist will do an activity with her one week and the next week, it is like a completely NEW activity for my mom. She has to retention! Having memory issues makes it harder to re-qualify for therapy, and I have a feeling that my mom has been able to continue therapy for over 8 months straight because of my attendance, participation, and help reminding her about specific exercises at home. 

After therapy, I got my mom back to the car and then I drove to CVS to pick up prescriptions for them. Once chores were complete, I picked up my dad at his memory care center and I drove them to Maryland for a late lunch. Peter is in Philadelphia for the week, and therefore, I have decided to take my parents out to eat a couple of days this week. 

While eating, my mom was peppering my dad by asking him what he did at his memory care center today! This is a ritual I hear three times a week. My dad carries a notebook and pen in his shirt pocket. We remind him constantly to write notes to himself, to help him jog his memory about activities performed. Despite constant prompts, he doesn't remember to use his notebook. After spending 4-5 hours at his memory care center, when we pick him up, he can't recall ANYTHING he did that day. Not even what he did right before walking out to the car! It is extremely frustrating as his caregiver and yes I know he has a memory problem, but I also think there is a part of him that simply doesn't care, doesn't want to be bothered, and rather be a couch potato. 

I used to have a specific routine with my dad each morning since he moved here in 2021. One was to write in his daily log book and the other was brain games. Slowly now over time, I have eliminated both activities. Brain games were eliminated first because I found that I was the one doing the puzzles and reading comprehension and he would hurry me along to get the activities over with. More recently, within the last two weeks, I have now stopped the daily logbook. Again this was something he didn't enjoy doing with me and when I would ask him questions about the book (something his speech therapist encouraged me to do), he would get borderline hostile. So I made the executive decision to stop the log, it was irritating him and making me angry. But I think it is unfortunate that he has no interest in using and exercising his brain. Just a sad commentary. 

Lunch out was another disaster, where he had a bowel movement in his pants. I had to fully clean him and in the process of doing this, his fleece jacket landed up in the toilet bowl. Another thing I had to manage and take home and throw in the washing machine. I am on my third load of laundry, and this is just for today! 

There are countless family caregivers in the United States every day doing what I do. I know there are, as I studied this for almost a decade in my doctoral program. But all I can say is caregiving for parents is hard to describe and I can appreciate why many adult children do not want to take this on within their own homes. 

Sunday, September 17, 2023

Sunday, September 17, 2023

Tonight's picture was taken in September of 2008. That week we visited New York City, to take Mattie to a renowned cancer center to be evaluated. That particular evening our former neighbors in Washington, DC invited us and my lifetime friend Karen (pictured here) over to their home for dinner. They were a NYC support team. Today is Karen's birthday, so it seems fitting to post this photo of the three of us. At that moment in time, we had hope that perhaps we could attack Mattie's cancer and give him a chance at life.  

Quote of the day: Grief can't be shared. Everyone carries it alone; his own burden in his own way. ~ Anne Morrow Lindbergh

On September 29, I have been asked to speak at a webinar on Legacy Making. The webinar is being hosted by the International Psycho-oncology Society. I am going to be discussing my own personal views on the topic and how it relates to us building Mattie's legacy! So what does legacy actually mean? Well the Oxford Dictionary says that legacy is "the long-lasting impact of particular events, actions, etc. that took place in the past, or of a person’s life."

For the past two to three weeks, I have been giving this topic of legacy making A LOT of thought. This is a buzz word that rubs me the wrong way. Specifically because of my history with it. When Mattie was dying, we did not work with anyone on the clinical team to capture Mattie's thoughts, reflections, or how he wanted to be remembered. He was 7, I don't think Mattie would have put up with such clinical exercises, and furthermore, I am NOT sure we were mentally prepared for Mattie's death. Having a discussion about legacy making would have set me off. 

Moving forward. After Mattie died, Peter and I were invited to a palliative care conference to talk about bereavement and our journey with Mattie. Before our panel presentation there was a session on legacy making. The social workers discussed the topic and the clinical resources they use to help families capture a child's legacy (while the child is facing a terminal diagnosis, and in end of life care). The social workers showed examples of remembrance books created by the child, a listing of activities of how the child wished to be remembered, a listing of what friend should get what toy, etc! As Peter and I were listening to this, all that was going through our minds was.... WE DIDN'T DO THIS! WE DON'T HAVE ANY OF THIS and WE FAILED! Literally we were dejected and troubled and frankly now over a decade later, I can still recall that moment in time like it were yesterday. 

The problem with all of this was the rigid interpretation of legacy! To this group of clinicians, legacy meant something that is captured from the person who is dying which is then passed down to those left behind. It is a very purposeful and intentional task. I can see this working for a teen, young adult, or adult, but how does such a process work with a young child? I think it doesn't! In fact, I would say that legacy making must be done by the ones LEFT BEHIND, those of us still living and trying to make sense out of a traumatic loss!

On of my presentation slides for the webinar is this one! Notice I show two images. One is a person handing over a legacy to most likely a person left behind. The other image has been my interpretation of legacy.... which is creating a life story together. 

When I shared this slide with the leader of the webinar, she encouraged me to replace the "or" in this or that with an "and." 

I absolutely understood her perspective, but for me, who lost a seven year old child, it wasn't "this and that," it will always be "this or that." I feel strongly about this because I did not have someone on Mattie's healthcare team working with us to capture Mattie's feelings and thoughts before he died. Again in all fairness to them, I think they were traumatized too with the rapid pace Mattie was dying. We went from fighting the illness one minute, to end of life care the next. Now 14 years later, I no longer blame anyone other than the situation. But without having Mattie's thoughts, words, and feelings, we had to come up with how to memorialize Mattie on our own. 

Mattie did a lot of creating in his lifetime and I do think Mattie’s artwork is legacy work! But it most definitely wasn’t created to be of such. Which is why I challenge people to think about legacy making as a journey we are on together, building a life story when the child is alive. Rather than purposefully setting out to create or reflect on things that will mean something to us when our child is dead! That is contrived, especially with a young child who is dying.

From my perspective we didn’t go into any activity with the mindset that we were building legacy! We were building our life story together and helping Mattie deal and cope with a horrible diagnosis and treatment! At the end of the day, it was Peter and me who looked back at all our times together and realized Mattie didn’t need to record his wishes or even say them to us. We didn’t fail. Instead our road map is found within his art pieces, his Lego structures we built together, and sharing our lives as a family. Those memories serve as the foundation of his legacy.  

In a way legacy making and end of life care are one in the same to many people. But are they? I think a similar analogy is with palliative care, which gets lumped into end of life care. The only people who truly appreciate the differences between these two fields are those educated in them and those truly practicing the specialty of palliative care. In some ways I feel like clinicians want to check the box and say "yes" I helped the family with legacy making, but in all reality, legacy making may look different for each child and each family. So being prescriptive with tasks and activities around this may not be helpful! 

There needs to be a mindset CHANGE! As families work with children, they are capturing their daily thoughts and feelings, but NOT as something tangible for end of life and a legacy. Certainly, it could be appreciated that way if the child does die, but given that none of us holds a crystal ball, we can't determine who is going to survive and who will not. Therefore, capturing stories, living one's life to the fullest, is the best way possible to build legacy. In looking at how Mattie led his life, we then uncovered his legacy. To me legacy making (for at least a dying child) is about the LIVING and isn't necessarily beneficial for the dying child. Mattie's legacy I believe wouldn't mean that much to him, from his 7-year-old perspective, but as his mom, it means a WHOLE LOT to me.