Saturday, September 30, 2023

Saturday, September 30, 2023

Tonight's picture was taken in September of 2006. Mattie was four years old and the beauty of Mattie was he wanted to be where ever I was! If I was working in the kitchen, so was he! As you can see, that day he brought his tinker toys right on in and built a structure and kept me company. We were like two peas in a pod, so when Mattie got diagnosed with cancer and then died, the best piece of me died along with him. I look at this photo tonight and wish I could transport myself back to this exact moment in time. Things were SO MUCH EASIER AND BETTER IN MY LIFE.

Quote of the day: Honest listening is one of the best medicines we can offer the dying and the bereaved. ~ Jean Cameron

It was a beautiful weather day! After I got my parents settled this morning, I went outside with a big garbage bin and started weeding. I was out there for two hours and looked like a weed myself after I finished. But I enjoyed the outdoor time, time with Sunny in tow, and cleaning up flower beds. I love to be surrounded by greenery and beauty. 

I notice a massive decline in my dad for the last two weeks. He is moving much slower and now is completely incontinent to bowels. I took them out for a late lunch today and the server who knows us in Maryland, commended me for having the courage and patience to take my dad out. She sees me jumping up and down to the bathroom, managing him at the table, and collecting his debris and tissues. I have no idea why my dad's nose starts running and he gets congested every time he eats. But he does. Today I went through three packs of tissues. 

If the tissue issue wasn't bad enough then the bathroom routine would do most people in. I had my dad go to the bathroom before we got in the car to head to the restaurant. Then while eating he had to run to the bathroom. I had to completely change him. Once lunch was over, I packed everyone in the car and I was about to leave. I looked over at my dad and he was making that funny face. I knew..... he had to go back to the bathroom. So I re-parked the car, took my dad back into the restaurant to use the bathroom, and I had to change him yet again. Some people need exercise classes, I don't need them because I never stop moving!

Friday, September 29, 2023

Friday, September 29, 2023

Tonight's picture was taken in September of 2005. Mattie was three years old. We took him to a park that weekend and I have NO IDEA what possessed Mattie to find this big log and carry it around. With Mattie there was always a plan and he was very good at recruiting help and participation in his antics. All I know is Mattie made life more fun, entertaining, and memorable. 

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

I made the executive decision last night that I wouldn't get my dad up early this morning. I was a speaker on a live webinar from 9am to 10:30am. Certainly I could have gotten my dad up and ready, but the reality is if he was up, I wouldn't be able to concentrate. He'd be up and down running to the bathroom, and the bathroom is right outside my office door, which has floor to ceiling glass panels. Therefore, for 90 minutes, I wanted to have peace, to be able to be myself without worrying about everyone else! I made the RIGHT decision! It was the best 90 minutes of my week! https://www.ipos-society.org/event-5289536

I have shared a few of my other presentation slides with you, but I am going to show you four more tonight!

This webinar did a great job at helping audience members understand that legacy making is not just something you do at the end of life. In addition, a legacy may not be something just passed down from the dying person to those left behind. 

In my portion of the presentation I tried to explain that for us, Mattie's legacy was his life story and the experiences we shared together. Because we did not have the opportunity to capture Mattie's words, thoughts, and requests for how he wanted to be remembered, we instead had to do a lot of soul searching and reflection on his life and ours together. Therefore, Mattie’s legacy wasn’t created through prescriptive exercises at the end of his life, but by examining his life in total. 

I absolutely LOVE this slide! 

My first clue that legacy making is about one’s life story and the importance of telling that life story for those left behind, occurred on the day that Mattie died.

• Mattie’s healthcare team visited his room about an hour after he died. 
• They sat in a circle, around Mattie's body.
• They held an impromptu celebration of his life at his bedside.
• Stories, special moments, and memories were shared.
• During this most vulnerable time, we learned that Mattie’s life and legacy will always remain alive within each of them.
• They are our memory keepers. 

Legacy is not just stories and memories. Tangible remembrances are also important.

• I shared with the audience some of the tangible legacy items that we have, starting with Mattie's memorial oak tree at his school. I explained that we visit and decorate that tree throughout the year on special occasions and holidays. 
• We have two difference pavers. One is at the church where we held Mattie's funeral and the other is at Mattie's hospital. 
• We have a memory quilt comprised of some of Mattie's clothes.
• Then I highlighted the two photos on the lower right hand corner. One is a short story Mattie created while at the hospital. This story was framed and to this day is STILL hanging in the children's art gallery of the hospital. People who know us and go to Georgetown, send me photos on occasion while they walking through the gallery. The sign that says 'Georgetown' hangs in the pediatric units of the hospital. Anyone getting off the elevator and onto the in-patient floor sees this sign. Mattie's footprint is on the upper right hand corner. To this day, now 14 years later, this sign is still on display. These tangible items remind me that Mattie's spirit and legacy are alive within his community. 

Intentional Legacy Making:

• Daily blog postings since 2008. That’s 15 years of writing!
• Photos, videos and reflections on Mattie’s life and our grief journey. 

Unintentional

• Blog followers, many who have NEVER met Mattie, feel like they know him through my postings.
• Followers send me their own photos of things that remind them of Mattie.

• Mattie loved his art therapists and child life specialist.
• He loved to create and used all sorts of media... paint, clay, cardboard boxes, and Legos. 
• Mattie's legacy is found within his artwork and our shared experiences creating them. 
• The artwork and photos are constant reminders of who was Mattie, what he valued, and what direction we should take, as his parents, when building his legacy.
• These photos also show me that Mattie was happiest when creating and supported psychosocially.

Thursday, September 28, 2023

Thursday, September 28, 2023

Tonight's photo was taken in September of 2006. This was classic Mattie. He loved playing on the staircase in our townhouse. That particular day, he grabbed a cat toy and tried to engage Patches. As you can see, Patches did not seem amused. Mattie and Patches had a good connection with each other and Patches seemed to naturally understand that when we brought Mattie home from the hospital (after he was born), that she had to be on good behavior and look out for Mattie. I miss both of them. 

Quote of the day: I'm gone now, but I'm still very near, death can never separate us. Each time you feel a gentle breeze, it's my hand caressing your face. Each time the wind blows, it carries my voice whispering your name. When the wind blows your hair ever so slightly, think of it as me pushing a few stray hairs back in place. When you feel a few raindrops fall on your face, it's me placing soft kisses. At night look up in the sky and see the stars shining so brightly. I'm one of those stars and I'm winking at you and smiling with delight. For never forget, you're the apple of my eye. ~ Mary M Green

On September 28th, I always acknowledge my maternal grandmother's birthday. If my grandmother were alive today, she would be 116 years old. This photo was taken at a hotel in Westchester County, New York. My grandma and mom came to visit me in college and some how we landed up near where I grew up in New York. I frankly don't remember the specifics, but I do remember this snapshot in time. 

My grandmother was a very kind, sweet, and gentle soul. She was a born caregiver and took this role seriously without ever complaining. Truly remarkable. My grandfather died from colon cancer before I was born. So by the time I was on the scene, my parents and grandmother were living together in the same house. As a child I thought everyone lived in a multi-generational household. I am glad I did, as I learned a lot from my grandmother and in many cases viewed her as a second mother. 

It was not a good day. In fact, this week, I reached a whole new low. I did not even think that was physically or emotionally possible. But you know the saying.... things can always be worse?! Well it is true. It makes you want to appreciate whatever moment you have because truly whatever stability we think we have can change on a dime. I continue to learn this time and time again. 

The one miracle and blessing, is that we learned that Sunny's cancer is stable today. I realize Sunny's situation is fragile, but with cancer, I have learned to appreciate stability. Sunny is on his last chemotherapy option. The last two drugs he took, did not work. After a full day with my parents, taking them to lunch, hearing my mom's lament and tirade over and over again at lunch, I then drove to the vet with my parents in tow to retrieve Sunny. Sunny has trouble getting into the car, so I had to lift him. That's 64 pounds, in and out of the car. Once I got home, there was countless chores, that literally took me over two hours to complete. There are times I feel like I am being punished and apparently this is my fate in life. I am hoping tomorrow is a better day.

Wednesday, September 27, 2023

Wednesday, September 27, 2023

Tonight's picture was taken in September of 2006. Back then childhood cancer was the furthest thing from our minds! That weekend we took Mattie to Scott's Run! This was another great nature park that we visited on a regular basis. Of course, at some point in every trip, Mattie landed up on Peter's shoulders. Mattie gravitated to being up high, and we learned this when he was a baby. Mattie hated his strollers and did not like front carriers! The only thing that was a guarantee was sitting in a back pack with Peter. Our weekends were always filled with some sort of outside adventure. Regardless of the weather or season. 

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

As the webinar that I am participating in on Friday is fast approaching, I have been giving a lot of thought to Mattie's legacy. So many times when we think about legacy, we visualize someone who is dying passing something down to those of us left behind. But is that really the only way a legacy is built? Based on a dying person's wishes and thoughts!? In our case, the answer is NO! There are many reasons why it is hard for families to capture a loved one's dying wishes at end of life. Some of it maybe timing. Some of it maybe these conversations are too hard, or in our case, the dying person was a young child. 

I think Peter and I both agree that Mattie's legacy was built on our life story together. Thankfully Mattie's life was always captured through photography! I can't tell you how these photos have helped to lay the groundwork and road map to Mattie's legacy. Whenever I look at Mattie in the hospital or in the out-patient clinic, he was typically busy with a project. Art and creativity were his therapy. This was when he was the most happy! We have taken that life lesson to heart when creating Mattie Miracle. As the Foundation focuses solely on the meeting the emotional and social needs of children with cancer. 

I have spent time trolling the internet and what pops up regarding Mattie's story always captures my attention. Clearly years ago, I did an interview with the Center to Advance Palliative Care. As I re-read this quote, I of course recognized it. 

It was through Mattie's cancer journey that I learned you can indeed have HOPE even while helping someone die. I would never have realized that before. Being Mattie's parent and advocating for a death with dignity, was where the hope lied. It was a task, a focus, and something we united around to tried to achieve. After all, it was devastating coming off of active treatment. That was a huge loss, as we had to accept there was no cure. But we did not have time to process this loss, because we had to quickly manage the next phase of Mattie's journey. As one of Mattie's nurses used to say.... "THERE IS NOTHING NATURAL ABOUT DYING." In Mattie's case that was 100% correct!  

Another photo I found! To me, the Psychosocial Standards of Care, something we advocated for and funded, will always be a part of Mattie's legacy. They were born out of his experiences and Mattie's, "Mr. Sun" is featured on the front cover of the journal. 

So indeed one boy's life can have a profound impact on a profession and the way cancer care is provided!

Tuesday, September 26, 2023

Tuesday, September 26, 2023 -- Mattie died 730 weeks ago today.

Tonight's photo was taken in September of 2007. I will never forget this moment in time. That Saturday, the Embassy of Sweden had a family day. They had all sort of fun activities and educational booths set up for families. Outside the Embassy they placed this giant school chair. Mattie climbed up it and I naturally had to take a photo. Now looking back at this snapshot in time, LIFE WAS SO MUCH EASIER. I did not realize how good I had it, and now my life has truly come crashing down in all ways after Mattie died.   

Quote of the day: You don't go around grieving all the time, but the grief is still there and always will be. ~ Nigella Lawson

On Friday, I am taking part in an international webinar on legacy making. I have been asked to provide a personal lens on this topic. When I created this slide, I decided to go on-line and Google the Psychosocial Standards of Care. There are SO MANY items that popped up. From photos taken at conferences, to slides in poster presentations, as well as articles of all kinds. I highlighted only a few in this slide. 

Along with my Google search, I came across an article that was written in 2013. Frankly I almost forgot it, until I looked and read through it. If you want to read it, go to: http://www.connectionnewspapers.com/news/2013/may/16/miracles-continue-matties-memory/

In the last segment of this article, the author interviewed, Tricia. Mattie's favorite oncology nurse. Believe it or not, now 14 years later, Tricia and I are still friends and communicate often. She is a woman who I will never forget! Not only because of the stellar way she took care of Mattie, but because she was a fierce advocate for all three of us and cared about our well being. She was one of the only nurses we worked with who had children of her own, and I think this personal perspective gave her great empathy and compassion. I will always be grateful and indebted to Tricia. 

In my down moments, and I have had MANY of them this week, reading Tricia's comments brought a smile to my face. Seeing me through her eyes, makes me understand that others do see me as competent, caring, and a giving individual. The type of person I strive to be each and every day with those entrusted in my care or who I love. Tricia's words:

Tricia doesn't shy away from heaping praise and gratitude on the Brown family, repeatedly referring to Sardi-Brown as "amazing," "selfless" and "awesome," and to Peter Brown as "wonderful."

There's a tremendous respect and admiration for Sardi-Brown from her friends and those who know her through the foundation.

"She's an inspiration to me," Tricia said. "The strength and courage she gave that little boy was incredible at a time when she was frightened out of her mind .... It's her love for Mattie that propels her."

Monday, September 25, 2023

Monday, September 25, 2023

Tonight's picture was taken in September of 2007. I remember this day distinctly. Mattie came home from kindergarten with this homemade creation. Mattie joined an after school activity called construction club. The club was run by his kindergarten teacher and literally they used glue guns, hammers, tape, and glue! You would be amazed with what Mattie could create from everyday objects. In fact, I think construction club set the stage for all his cardboard box creations that Mattie built during his cancer treatment. He literally took his construction club skills and put them to work on a grander scale! He left no cardboard box untouched at the hospital. 

Quote of the day: People touch our lives if only for a moment, And yet we're not the same from that moment on, The time is not important, The moment is forever. ~ Fern Bork

Given how I am feeling, I wanted to display some of our Fall decorations for the house.  

Before my parents moved in, I purchased some fall things at the crafts store. I used to love going there to shop! It seems like decades ago, as now I can't think of life before they moved in. 

Carolyn's sunflowers by Mattie's Mr. Sun painting. Seems appropriate!

This container and flowers I got at the crafts store in 2021. I remember how exciting this was, since I never lived so close to such a store. When I was in Washington, DC, getting to our crafts store was quite a drive. I can recall that fun and happy moment in time, and yet now that it is almost two years later, my world is devastatingly different. 

I got out the tall ladder and put our fall bough above the door ledge. I happen to love that little ledge, because it is the perfect spot to display seasonal items. 

Our local grocery store was featuring these artificial flowers. I absolutely loved them, because they are Mattie Miracle colors. Typically I don't buy impulse items, but that particular day I decided to just get them because I wasn't sure how long the store would have these items in stock. Fortunately I bought them when I did, because the next time I went to the store, all these flowers were GONE! 

Sunday, September 24, 2023

Sunday, September 24, 2023

Tonight's picture was taken in September of 2007. That day, Mattie and Peter invited me out on a rowboat. We traveled down the Potomac River. This was a regular occurrence for the boys, but on this rare occasion, Mattie wanted me along. Most likely to show me the skills he was learning. Naturally I never went anywhere without my camera!

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

It was another depressing day in the National Capital region. Rain, more rain, and grayness. This kind of weather impacts my mood and spirit. Overall it was not a good weekend for me. However, no matter how I feel, I have to keep it together as I am caring for both of my parents, who are very dependent. 

I have found the only way to survive difficult times is to keep busy. Or as I call it, having.... diversions! I would say this is how I lived my life during the first six months after Mattie's died. Back then I wasn't sure which way was up or whether I had the energy to even shower. But somehow back then I got involved in craft projects and became glued to Hallmark Movies. I remember literally sitting in bed, with the TV on and craft items all over the bed. That was my therapy. 

My current therapy is constant activity! Cooking, cleaning, caring for my parents, Sunny, and Indie. Though I could have had a meltdown in the corner today, I did not. I went grocery shopping, walked through the food aisles (which I happen to like), and then came home and baked halibut, yams, and made an arugula salad. Good food and eating brings me happiness. There are times I can feel bursts of anxiety coming on or even a migraine with nausea. But I try to work through these feelings and walking outside to see Sunny (even in the rain) is another gift.