Saturday, November 4, 2023

Saturday, November 4, 2023

Tonight's picture was taken in October of 2008. I remember this moment in time like it were yesterday. It was the weekend before Mattie's first limb salvaging surgery. We were all on the edge, dealing with intense anxiety, and fear. That day, we took a local road trip to the Inner Harbor of Baltimore. We walked around, toured a train museum, and had lunch by the water. As you can see, Mattie was holding a Lego structure in his right hand. Mattie never walked empty handed, it was one of his tell tale signs!

Quote of the day: Everyone must leave something behind when he dies, my grandfather said. A child or a book or a painting or a house or a wall built or a pair of shoes made. Or a garden planted. Something your hand touches some way so your soul has somewhere to go when you die, and when people look at that tree or that flower you planted, you’re there. ~ Ray Bradbury

I was sent three photos today from Chicago. An International Research Sibling Summit was taking place and though we were not there.... look what was being featured! 

On this slide, you will see a photo of Mattie and a picture of us with our research team back in 2012 at our Psychosocial Symposium on Capitol Hill. From that Symposium, we charged the research community to develop evidence based Standards of Care. Presenting in this photo is Dr. Lori Wiener. I had the good fortune to meet Lori in 2011, and from there our collaboration began. It is thanks to Lori's leadership that the Standards were developed and published. Lori is one of the gifts Mattie left behind for us. Whenever I wonder what impact does Mattie Miracle have on cancer care, I get photos like this to remind me. It is indeed significant. We learned many lessons from Mattie and these lessons are now guiding the way cancer care is being delivered. 

The researcher presenting here is Kristin Long. She is based out of Boston University and she is one of the first researchers we awarded a grant! You maybe able to see Mattie Miracle's logo on the screen, as she is giving us credit for being a funder of her research. 

Mattie Miracle awarded more than one grant to Boston University and through this group's research they have developed a timeline of when supportive services should be offered to siblings of children with cancer. 

To read more about their timeline, go to:

https://childfam.wixsite.com/siblingblueprint/copy-of-timeline-for-services

I find fun stories of the day, help to change my mood and outlook. Have you heard the story about Kevin Bacon? NOT the actor, but the 200 pound pig who escaped his family's farm! Thanks to a sticky bun and Benadryl, the Kevin was returned home! Check out the story: Missing pig named Kevin Bacon finally found after shout-out from actor Kevin Bacon

Friday, November 3, 2023

Friday, November 3, 2023

Tonight's picture was taken in October of 2008. I know that this photo had to be taken on a Friday! How do I know this? I know because Mattie was in the hospital hallway watching the Chemistry Club do their hands on activities and experiments. Mattie LOVED this Club and he developed a friendship with Chris, the Club's president. No matter how Mattie was feeling, he always wanted to see Chris and the Club. That day, Chris brought red roses to the unit. He gave the kids a rose and then they got to dip it in dry ice. Once the rose was frozen, they then threw the roses on the floor, and literally they broke in a million pieces. Mattie loved his rose, and though he watched the process with the other children, he refused to dip his rose into dry ice. 

Quote of the day: We have trauma, and we have grief. People die, and we find it baffling. Painful. Inexplicable. Grief is baffling. There are theories on how we react to death, how we cope, how we handle loss. Some believe the range of emotions mourners experience is predictable, that grief can be monitored, as if mourners are following a checklist. But sorrow is less of a checklist, more like water. It's fluid, it has no set shape, never disappears, never ends. It doesn't go away. It just changes. It changes us. ~ Mira Ptacin

It was another full day today. However, by 4:30pm, I decided to take a break and walk with Sunny outside. Given Sunny's energy level now, our walks are much slower and we don't cover as much territory. However, I always try to give him a little bit of a walk through the woods. As he loves exploring and sniffing around. I find the woods calming and for the time I am in them, it reminds me of the beauty that still exists in the world. 

Now if you want a chuckle, YES I look for opportunities to laugh these days, then you have to check out this article. I heard about it on the news tonight, so I went to look it up! 

The article is titled, If You Want to Know If Someone's Gen Z or Millennial, Just Check Their Socks. Truly the debate over whether you wear ankle socks or like your socks pulled up further seems thoroughly ridiculous to me. If you are curious, I prefer ankle socks like millennials. But I am NOT a millennial, so I am not sure how you classify those of us pre-millennial?!!! Nonetheless, the article highlights the reasons why millennials love ankle shoes. While reading it, I was bobbing my head up and down in agreement! With the world around me in chaos, the distraction of walks and silly articles like this work for me! 

Thursday, November 2, 2023

Thursday, November 2, 2023

Tonight's picture was taken in October of 2008. To me this was a priceless photo! Mattie had been working on designing a haunted house out of a cardboard box in clinic. He literally worked on it for weeks. The staff held onto the box for him and Mattie would pick up where he left off the next time he was in clinic. This house was intricate and spooky, both inside and outside. Mattie designed ghosts and witches and you can see one of them in his left hand. Inside the box, he had witches flying around on strings and all sorts of attention to design and function. To me it was very impressive for a 6 year old!

Quote of the day: Be the reason someone smiles. Be the reason someone feels loved and believes in the goodness in people. ~ Roy T. Bennett

Tonight's quote really resonates with me. It is really the philosophy of how I live my life, as I always try to find the good in people, I believe in them to want to rise up and make good decisions, and my goal is never to cause hurt or harm. Am I perfect? By no means, but I am human. 

I took my parents to the cardiologist today for their 6 month follow up visit. The cardiologist is a lovely person and both of my parents received a good report today. I truly believe that they are both thriving because of my care, support, cooking, and getting them out and about. I am not sure doctors fully appreciate the role of a family caregiver and how we actually make their lives easier for them!

After the doctor's appointment, I went to Mattie Miracle's post office and started the process for the Foundation's mass mailing. This takes time for me to craft the holiday letter, print it, order little gifts, and then assemble the mailing! I learned the hard way over the years..... that holiday stamps go quickly! So I always get stamps either at the end of October or the beginning of November, to ensure I can get 400-500 of them! I love our post office and particularly Darryll, who assists me and the Foundation. However, he has been ill for quick some time and I can see the toll this illness is taking on his energy, his personality, and joy of life. Seeing his decline saddens me deeply, because he is simply a wonderful, dedicated, and talented postal employee. I will always be grateful to Darryll.

From the post office, we went out for lunch. While at the restaurant, a gentleman came up to our table to talk with us. He was well dressed in a suit, walked with a cane and told us he was a Vietnam veteran (two time purple heart recipient!!!) and is in his 70s. He came over to talk with us because he wanted to let my dad know that he was proud of him. He can see that my dad uses a walker and moves at a very slow pace. Yet he was impressed that this did not stop my dad, that he was still out and about and enjoying life. I always think it is fascinating to see what other people absorb and observe! Between the doctor and this fellow's comments today, they reminded me (INDIRECTLY) that I serve a vital role. I have worked over these last two years to make sure my parents can remain in the community and not be institutionalized. However, this stability doesn't just happen! It happens because a great deal of love and care are provided to this daily undertaking. 

Last thought for the day! Mattie Miracle celebrated its 14th anniversary today. Fourteen years ago today, the Foundation was incorporated in the State of Virginia. It is totally amazing what we accomplished from such tragic loss. Here's a cute story! I was contacted by a college student last week. She would like to interview me about Mattie Miracle. Turns out she is doing a research paper on childhood cancer and reached out to a doctor at Dana Farber to learn more. This doctor told her about the Psychosocial Standards of Care. When this young woman found out that Mattie Miracle had the vision and funded this project, she couldn't get over it! Which is why she is eager to learn more, particularly how parents can be successful advocates of change, change that optimizes the psychological and social care provided to all children with cancer in this country. 

Wednesday, November 1, 2023

Wednesday, November 1, 2023

Tonight's picture was taken in October of 2008. This was Mattie's third month on chemotherapy and his taste for food had changed dramatically. Some days Mattie wouldn't want food at all and other days he had certain cravings. We went with whatever he presented us. There was a time when he went through a pasta and tomato sauce phase, and as you can see we made sure he got what he requested. I recall one morning, Peter left the hospital at 3am, searching high and low for pasta! It was a moment of stress neither of us will forget, but when your child is feeling miserable and you are dealing with life and death decisions, the only control we did have was mobilizing and getting food!

Quote of the day: Words are like nets - we hope they'll cover what we mean, but we know they can't possibly hold that much joy, or grief, or wonder. ~ Jodi Picoult

This morning I woke up at 6am, on my own! I assure you just two years ago, this never would have happened! I have never been a morning person. But now being programmed to get up early for my parents, it becomes a more natural occurrence. When I arose, I was freezing. I tried to turn up the heat, but I couldn't get the thermostat to work. Given that my parents run COLD all the time, I knew this had to be corrected immediately. Peter tried to diagnose the problem too, but there clearly was a problem. Thankfully we have a service contract with a great outfit that takes care of our heat, electrical, plumbing, and AC. So I called them this morning and by 3pm today, a technician was over to provide support. 

The technician was a competent person. I love people like this! Don't you know before he left today, I asked him for his cell phone number. It is important to me to have direct access to all our service providers because the house is a large responsibility and caring for my parents, makes it vital that heat, water, and electrical are working! Before the technician left, he commented about his conversation with Peter and that he was impressed with Peter's career history. After which, he asked me if I worked!? Now that is a loaded question!!! I explained that right now I am caring full time for my parents, but that I also run a Foundation. I did not explain more. Most people would have dismissed what I was saying, because nothing about my words were glamorous. However, his response was the exact oppositive of what I was expecting. He basically said, caring for people is the HARDEST job there is! I couldn't have said it better!!! Since I work day in and day out without much praise or kind words, his comment today meant a lot to me. 

Meanwhile, I received this children's book in the mail. Someone is donating about 30 of these books to me, to give to the hospitals Mattie Miracle supports! The book is written by two teenage siblings. It is a very sensitive and touching book, without being frightening and overwhelming, which isn't easy given its discussion of living with a life threatening illness. 

Here is an Amazon synopsis of the book:

When too little is known and too much is feared, we turn to books. In the spirit of providing much-needed solace comes Henry & the White Wolf, an illustrated storybook-and poignant allegory--to help kids who are sick, or kids with friends who are sick, or kids whose parents or siblings or teachers are sick.

What makes the simple, straightforward story especially comforting and so close to a child's point of view is that it is written and illustrated by a teenage brother and sister who draw not only on their own feelings of being in the hospital, but the experience of offering support to close friends with serious illnesses. It is this spirit that inspired the authors to package with the book a soft, round stone for every child to hold-just like the talismanic stone in the story that Henry, the little sick hedgehog, must hold onto while undergoing the debilitating treatment offered up by the fearsome White Wolf. No matter how bad it gets, Henry clutches his stone for dear life-literally-and it reminds him that the dignity and courage he needs to get better are always with him.

Tuesday, October 31, 2023

Tuesday, October 31, 2023 -- Mattie died 735 weeks ago today.

Tonight's picture was taken on Halloween of 2008. Mattie enjoyed two Halloween events that day. One at the hospital and the other in the evening with his buddy Zachary. Mattie is pictured here with Sally the Story Lady. Mattie absolutely LOVED Sally. She visited the pediatric units monthly and no matter how Mattie felt, he always wanted to see Sally. In fact, Sally was one of a handful of volunteers who was allowed in his room. Mattie loved acting out Sally's stories and I can't tell you how grateful I was to have Sally in our lives, because some days, there was nothing I could do to bring a smile onto Mattie's face. 

Quote of the day: And perhaps there is a limit to the grieving that the human heart can do. As when one adds salt to a tumbler of water, there comes a point where simply no more will be absorbed. ~ Sarah Waters

This morning I was listening to the radio while getting showered and dressed. The commentators were highlighting spooky stories for Halloween. In fact they had a woman on who investigates paranormal phenomenon and she runs a company that will help rid your home of spirits. As she said some spirits are good, a family members, and she works on helping them pass onto the next world. Somehow I found her dialogue strangely fascinating! She highlighted several of her experiences and I concluded....... perhaps anything is possible!

I know when I was a child and traveling with my parents and grandmother in England, we stayed at a hotel in Bath. My mom and grandmother swore this hotel was haunted. I was under ten years of age, so my memory is spotty, but I do recall that several nights my mom slept into the room I was sharing with my grandmother. I truly don't remember how they sold me on this but now as an adult I know that the reason for my mom's presence was the fact that my grandmother was VERY scared! My grandmother was a sensitive soul, so if someone was going to see or hear a spirit, I am not surprised it was her. The thing is when my mom came in for a few nights, she too heard what my grandmother had been reporting to her. Years later, I learned that the sounds they heard were like a big party next door to us. Champagne being opened, glasses clinking, and people talking and having a good time. But here's the thing! There was nothing next to our room other than an elevator and its shaft. I am so glad they did not tell me what was going on back then, and that I slept through it all, because I would have been an anxious mess.

Trick or treating began at 5pm in my neighborhood. It seemed super early, but I guess with young kids, it makes sense. I have no idea what my other neighbors are doing, but I decided to place candy in a bin on our door step. I am in no mood for conversation and small talk!

It is 7pm, and I can say we had MANY more trick or treaters last year! I couldn't keep the bin full last year. This year, I can't give the candy away. Families are coming in groups, as you can see one bunch was walking away after visiting our cul de sac. 

I however, LOVE having extra candy, because whatever doesn't go tonight, I donate to Mattie Miracle's Candy and Snack drive! 

Monday, October 30, 2023

Monday, October 30, 2023

Tonight's picture was taken on Halloween of 2008. Next to Mattie was Brandon. Mattie and Brandon were diagnosed around the same time, with different forms of cancer. Despite the 10-12 year difference, these two were great buddies. Mattie and Brandon trick or treated at the hospital together, did crafts and games, and hung out that day. The hospital did a wonderful job, as we literally went to different administrative floors in the hospital and collected candy from door to door. 

This special connection between Mattie and Brandon was truly special to witness. Even when Brandon went into remission and was off treatment, he made the trip to the hospital  on a regular basis to visit Mattie. Keep in mind that Brandon lived over an hour away from the hospital. On the day that Mattie died, Brandon also came and sat in Mattie's room with us for hours. He took part in the impromptu celebration of life event around Mattie's bedside, and to me was a devoted friend. 

Quote of the day: When our days become dreary with low-hovering clouds of despair, and when our nights become darker than a thousand midnights, let us remember that there is a creative force in this universe, working to pull down the gigantic mountains of evil, a power that is able to make a way out of no way and transform dark yesterdays into bright tomorrows. ~ Martin Luther King Jr.

My morning started at 5:15am. I assure you this is NOT my hour. It was very dark at that hour and when my feet hit the floor, I literally said to myself..... this is going to be a long day, can I actually do this? I am not sure I waited for an answer, as I know that if I don't pull it together my house wouldn't function. 

Honestly my mornings are nutty. At 5:30am, I headed downstairs to feed Indie (the cat), then I gave Sunny his medications and let him outside. I have learned with Sunny that eating breakfast is now more like a lunch time activity. So I don't push food on him, unless he seems to want it. Once the animals were taken care of, I head back upstairs to shower and dress. Then back downstairs I went to make breakfast for everyone, then to clean out the cat litter box, vacuum around it and the first floor, and finally clean down the kitchen counters and the bathroom on the first floor (since my dad uses it daily). From there, I headed back upstairs. I woke my dad up, made my parent's bed, got my dad showered and dressed, and finally downstairs for breakfast. 

While trying to eat breakfast, the electrician showed up to do an annual check of our generator. I was jumping up and down through breakfast, which also included cutting power to the house. Once things were more stable, I got my dad in the car and dropped him off at his memory care center. Once home, my mom and I took Sunny for a short walk. Are you getting the picture? Truly by 11am, I have had a FULL day, and yet my days don't end until 10pm!

While walking home with my mom and Sunny, I happened to look at my license plate on the car. Typically I pay NO attention to these kind of things, but today, I guess the registration stickers caught my attention. Probably because they read OCT 2023! I realized they were expiring after tomorrow and panicked. I reached out to Peter, who wasn't home at the time, and he scrambled into action. 

Needless to say, I had to find my way to our local gas station today to get an emission inspection, in order to supply this information to the DMV. In all my married life, I have to admit, I have never had to worry about inspections. But now we are juggling so much, that I am learning new things on a daily basis. 

I left my mom at Starbuck's and decided to go to the station around noon. I had no idea if there would be a line or how long it would take. When I got there, there was only one other car in front of me. I literally waited only 45 minutes and got the service completed. While waiting for my car, I was able to sit outside. YES even a gas station bench is a welcomed break and change for me. It was a beautiful weather day and I absorbed the sights of greenery, blue skies, and changing leaves. For me, I celebrate the small victories each day. 

Sunday, October 29, 2023

Sunday, October 29, 2023

Tonight's picture was taken on Halloween of 2008. This was Mattie's last Halloween with us. Given that he was recovering from his first limb salvaging surgery and chemotherapy left his head bald, Mattie was very concerned about how he looked. The staff at the pediatric outpatient clinic invited Mattie into their costume room to pick a costume of his choice. They allowed him to do this without the other children around. This was a God sent. Mattie gravitated to this mummy costume. It was perfect, because you couldn't tell that Mattie's right arm was wrapped up or that his head had no hair. Mattie trick or treated at the hospital and with his friend in the evening. It was a day I will never forget. 

Quote of the day: Only people who are capable of loving strongly can also suffer great sorrow, but this same necessity of loving serves to counteract their grief and heals them. ~ Leo Tolstoy

With everything else going on in the nation and world, I suppose this doesn't have as much significance. But to me, Matthew Perry's death marks the end of a specific time in my life. The show, Friends, came out when I was still a student in graduate school. I remember it was on every Thursday night, and I tuned in, probably like most of America. In a way, these friends were dealing with zany and real life issues, not unlike myself at that time. So it felt like we grew up together. In addition, when I would go visit my parents in Los Angeles, given where they lived, it was not unusual for me to see these cast of characters in real life too. When I heard that Matthew Perry died today, as strange as it sounds, it felt like a part of my history also died. I view my days when Friends was live on TV, as a better part of my life. 

I am always saddened when someone so young dies, someone who tried to bring humor and happiness to his audiences, and also someone who struggled with mental health issues. It is very clear to me that addressing mental health needs and concerns in this country needs a significant overhaul and improvement. So many people are struggling and so many families are frustrated and exhausted trying to find resources and help. 

At around 6pm, I took Sunny out for a walk. The weather was still glorious and Sunny was happy to be out and about. While walking, I noticed so many people have decorated for Halloween. The extent of my decorations are a Fall wreath and a big pumpkin. So tonight, I made some Halloween signs for our door and taped them up. Overall, I am not a Halloween fan for many reasons and the beauty of when I lived in the city was we NEVER got a trick or treater! I am serious not in the 26 years I lived there. Living in the suburbs is quite different, as I am surrounded by families with children and their lives look very different from my own.