Friday, October 6, 2023

Friday, October 6, 2023

Tonight's picture was taken in October of 2004. Mattie was two years old. Each October weekend, we would take Mattie to a different fall festival. This particular one had a petting zoo for the children. Mattie was getting a close encounter with a sheep, and his open hand and the fingers moving, was my tell tale sign that Mattie was fascinated and taking it all in.  

Quote of the day: Our grief is as individual as our lives. ~ Dr. Elisabeth Kubler-Ross

It was another difficult day. This afternoon, I picked up my dad from his memory care center, and then we all went out to lunch. While driving, my mom started in on me. I hear commentary day in and day out, and negative feedback constantly. Truly, I can take just so much. I tried to redirect my mom and also asked her to stop her lament directed at me. She wouldn't stop. So literally while driving, I was screaming at the top of my lungs. I explained to her that all this tension and stress is going to make me physically ill. If I become ill, the whole house of cards comes crumbling down. 

Honestly there are times all this stress gets to me and I just don't know how I will take it one more day, much less one more minute. After we got back from lunch, it was literally evening. Dining with my parents is close to a four hour experience. In any case, I got my dad settled, my mom went upstairs to change, and Sunny and I went for a walk. Sunny can't walk more than a few blocks now because of his cancer, but nonetheless, I know I need to get out of the house, get fresh air, and see greenery. This is my form of therapy, which helps me manage stress. 

Thursday, October 5, 2023

Thursday, October 5, 2023

Tonight's picture was taken in October of 2006. Mattie was four years old and that day we took him to Butler's Orchard in Maryland. They had a wonderful Fall pumpkin festival. We visited this farm practically every fall and spring. Mattie absolutely loved taking a hay ride out to the pumpkin patch to pick his own pumpkins. His love for all things ORANGE happened early in life, and we loved our fall festival adventures with Mattie. Prior to having Mattie, I literally never went to a fall festival before, so with Mattie there were many firsts. 

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

This morning, after getting my parents settled, I went to meet my friend, Denise for tea/coffee. We have been friends a very long time and we met each other in graduate school. Denise has been part of Mattie's cancer journey and during that time, I met her daughter, Marisa. Marisa was in high school at the time, but she volunteered to visit Mattie when he was home between treatment from the hospital. Marisa engaged and played with Mattie, so that Peter and I could get out of our home and regroup. This was a challenging task for an adult, much less for a teenager. But Marisa rose to the occasion each time. Once Mattie died, it was Marisa's idea to create a bake sale at our annual Walks. Marisa ran our bake sale for ten years, until our Walk turned virtual because of COVID.

Denise and her husband, Dave, attended our psychosocial think tanks at national conferences in 2012 and 2013 and Dave helped us manage our exhibit booths. I mention all of this because you can see their entire family has been a part of our lives. Denise is a successful mental health provider, and when I used to teach my graduate level classes, I always had Denise come and guest lecture in my classes. Today, however, I had the opportunity to experience Denise's therapeutic gifts first hand. No she wasn't giving me therapy (as we are friends) but it was the way she was listening and responding to my issues and concerns that made me have insight into her wonderful skills. It is not like our coffee solved my problems, but it was a glorious feeling to be heard, supported, and valued. In my daily life I am balancing one problem, one heartache, one compliant after the other. Truthfully there is so much one person can take before cracking. 

Denise surprised me with a box of assorted teas and look at these handcrafted chocolates! I absolutely love the fall theme. When Mattie was fighting for his life in the hospital, Team Mattie brought me tea and chocolates practically daily. So to me, receiving these specific gifts ironically reminds me that I am a mom. Not just any mom, but Mattie's mom. 

Don't you know it while Denise and I were sitting at Starbuck's, ABBA's Dancing Queen played. Mind you I go to this Starbuck's all the time with my mom and have never heard Dancing Queen played. So the fact that it played today was not by coincidence. It was another sign that Mattie is with me, he is watching over me, and reminds me I am never alone. Having amazing members of Team Mattie, like Denise, who are involved in my life is proof that the spirit of Mattie is alive and well. 

Wednesday, October 4, 2023

Wednesday, October 4, 2023

Tonight's picture was taken in September of 2005. Mattie was three years old. Mattie absolutely loved spending time in our bed. In fact, in the morning, once he was old enough to walk, he would jump out of his bed, come down the hallway, and then go to my side of the bed. He would tug on me and sometimes I was too exhausted to move, so he'd jump on top of the bed, looking for hugs. In any case, in this photo, it was the evening and we were reading books together and if you look closely, there was a toy truck along with us. Mattie did not travel anywhere without a toy car, truck, or train in hand! It was a telltale Mattie sign. 

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

My lifetime friend, Karen, sent me an hysterical message today about cats traveling in backpacks. She presented this content to her high school students today, asking them to dialogue about how the CAT FEELS TRAVELING IN A BACKPACK! Not how we feel, but from the cat's point of view!

The question is zany enough to get teenagers engaged, animated, and dialoguing. I love questions like this because in the process you learn a lot about another person's point of view. 

To be honest, I have NEVER seen a cat in a back pack. I had no idea it was a rage right now. My neighbors in Washington, DC used to walk their cat on a leash, which I thought was hysterical enough, but a back pack??? I clearly have never owned a cat that I think could be calm enough to go into such a pack! All I know is both Patches and Indie would fight like no tomorrow, before being placed in a bag. Which is why I always disliked taking either to the vet, because you have to capture the cats first and put them in a traveling cage/bag. 

I told Karen, I would to hear about her students answers to her question! Better yet, I would like to know if they have put their own cats in a back pack and how it went!!!

When I received the mail today, I found a beautiful and heartfelt card, along with this loving sunflower bracelet. My friend, Jean, sent this to me, just because. Jean and her family have been a part of Mattie's cancer journey from the beginning and Jean knows the importance of the sunflower to me. 

When friends send me sunflower things, what this ultimately says to me is that Mattie's story and legacy are alive not just within me, but within them too! What an incredible gift to receive, a reminder of Mattie's beautiful legacy!

Tuesday, October 3, 2023

Tuesday, October 3, 2023 -- Mattie died 731 weeks ago today.

Tonight's picture was taken in September of 2005. Mattie was three years old. That day we took Mattie to a farm to pick peaches. As you can see, Mattie was having a great time. He was our little Farmer Brown. I can't tell you how many peaches I brought home that day. I was making everything from jams, to pies, and muffins. It was our first and last time peach picking as a family, but it was a moment in time I will never forget. 

Quote of the day: Those things that hurt instruct. ~ Benjamin Franklin

Starting on September 23, life in my home has become so challenging. I go through moments when I feel fine, stable, and I can manage things, to then the exact opposite. Where I feel like I am going to crash and burn. Literally and figuratively. 

It has been another nightmare of a day and the one positive was going out to lunch with my parents. Mainly because where we go is like my restaurant version of Cheers (the TV show). Where everyone working there knows me. I can't tell you what a gift this is, as all the staff comes over, gives me updates about their life, their struggles, and they appreciate the support and connection. This gratefulness goes both ways, as I can't tell you how wonderful it is to have dialogue with people who do not have dementia. It is refreshing and for that moment in time, it makes me feel like I am alive, I matter, and I am valued.  

Monday, October 2, 2023

Monday, October 2, 2023

Tonight's picture was taken in September of 2005. Mattie was three years old and that day we took Mattie to a park to walk and explore. However, Mattie loved picnics! So as you can see, I made sandwiches, brought drinks, treats and towels. In so many ways, these were much simpler times in my life, and the funny part is I had NO IDEA!

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

This morning, after dropping my dad off at his memory care center, I drove to Washington, DC. It literally took me about 40 minutes to get there. I had a dentist appointment, and though I live in the suburbs, I still use all my doctors from when I lived in the city. To me this dentist office is state of the art, and I am not leaving it. 

In any case, I left my mom at home, and I had about two hours to myself. Who knew that going to a dentist could be respite. The waiting area in the office, has a beautiful picture window, soft music, and this TV screen showing this autumn scene. It is actually quite the screen, because leaves move in the wind, pages in the book flip over, and therefore it is relaxing while animated. It helps to set the tone for the visit. 

When my hygienist came out to get me, she gave me a big hug. She knows I am a caregiver to two people with dementia. Her dad had dementia, so she knows what I am up against. My parents are also her patients. When we got back into the room where she did my cleaning, she lowered the lights and put on "rat pack" music. As she knows I like listening to these golden oldies. In any case, we got to talking and we shared a lot of personal issues with each other. It was almost therapeutic, as we found we have even more in common than we knew. Needless to say, we both go to the dentist office for RESPITE. As I always say, caregivers of all kinds, are attracted to each other. We just immediately understand the one another.

Sunday, October 1, 2023

Sunday, October 1, 2023

Tonight's picture was taken in September of 2006. That week, Peter took Mattie to Boston to visit with his parents. He did this, so I could have the time to focus on studying for my licensure exam. I really needed that time to review material and get myself prepped for the exam in October. I am not a good test taker, so I truly appreciated having this uninterrupted time. While Peter was visiting with his parents, they received this BIG box! Naturally all cardboard boxes were considered very useable by Mattie. Together they constructed a playhouse and Mattie colored and painted it! The beauty of Mattie. 

Quote of the day: We must know the pain of loss; because if we never knew it, we would have no compassion for others, and we would become monsters of self-regard, creatures of unalloyed self-interest. The terrible pain of loss teaches humility to our prideful kind, has the power to soften uncaring hearts, to make a better person of a good one. ~ Dean Koontz

The highlight of my day is I took my parents out to brunch. Our server, who we have gotten to know well, showered us with Fall gifts. Last year she gave me the cute rectangular sign that says.... Autumn Leaves and Pumpkins Please. 

Today she gave me this pumpkin with sunflower plate! I think it goes with Mattie's Mr. Sun perfectly!

She also gave us this lovely battery powered Fall votive!

Lastly I received this pumpkin and sunflower towel! It is very special on a such an emotionally dark week to receive just because gifts!

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!