Saturday, September 2, 2023

Saturday, September 2, 2023

Tonight's picture was taken in September of 2008. Mattie was in his second month of chemotherapy. That day we were admitted through the outpatient clinic. While waiting to get admitted to a bed on the inpatient floor, Mattie spent some time in the art therapy area of the clinic. By that time in his treatment process, his therapists knew he LOVED cardboard boxes. They saved many for him over that year. That particular day, Mattie was NOT in a happy place. He constructed a little house built for ONE, went into it, and stayed there for a bit. I don't think I need to say much else, as the picture speaks 1,000 words. 

Quote of the day: A poet warrior realizes both the brutality and the beauty in life, and apprehends that the suffering we tragically endure is partly what makes us human. What also makes us human is the ability to love, the ability to stand in nature’s presence, and to nurture this earthly paradise to tend to our family’s needs. ~  Kilroy J. Oldster

Every September, without fail, we visit Mattie's tree. Last year, 2022, this was a photo of Mattie's White Swamp Oak. Keep in mind that this is memorial tree #4. The other three had issues. This tree was dedicated to Mattie in 2010, by the families of the class of 2020 (Mattie's class, if he had graduated). 

Today, Peter and I went ALONE to visit the tree. We get little to no time with just the two of us. The past several times we took my parents to visit the tree, they were completely disinterested in the tree and didn't want to get out of the car. So today I made the executive decision to leave them at home, while my dad had his physical therapy session. My mom gave me a hard time about not being included, but frankly sometimes I have to be the adult on duty and say NO. I have given up every aspect of my life to manage my parent's care, therefore, if I want this time alone with Peter by Mattie's tree, that is exactly what I am going to do. 

In comparison to last year's photo, look how much bigger the tree has grown!!! It is truly a mighty oak. 

As soon as I got to the tree, I saw that Mattie's plaque was missing. We looked high and low for it, and Peter found it buried in the mulch. I wrote to the school, because the stand for the plaque is missing and to me it is important to bring attention to the fact that this is NOT just any tree. But a tree that serves as a reminder of my beautiful 7 year old and his amazing life. 

I honestly couldn't get over the foliage on the tree. It was rich and healthy. You can see ornaments we hung from the past, such as orange awareness ribbons and butterflies. 

I placed this ornament on the tree in 2022, and it is one of my favorites! It is a statement I said to Mattie all the time.... I love you to the Moon and Back!

We added gold colored, sunflower themed, and donut ornaments to the tree. 

See the donuts? I know Mattie would have loved this, as he survived for a month on donuts during his first month of chemotherapy. 

See how big the tree is in comparison to me!

This afternoon, I took my parents out to lunch. We got to the same place in Maryland each Saturday, to visit with our favorite server, Dawn. My dad seems more exhausted than usual. He was periodically napping during lunch. While he was disengaged, so was my mom. She decided to ignore me for part of lunch. She took out her phone and wouldn't speak to me. 

Sometimes I feel like I could go insane. I am balancing and absorbing every emotion, every upset, all the anger, and so forth from every member of my household. I try to take it, to keep the peace, to empathize, to understand, and to keep my cool. But somedays it is very hard. I am not a bottom less pit, I too have feelings, have my own emotions, and need help. 

I was up and down multiple times at the restaurant taking my dad to the bathroom. It gets wearing! Sometimes I land up with intense hiccups, because I can't eat in peace. Any case, with the last bathroom trip, I left my dad in the restaurant lobby, by the front door. I went back to the table to pay the bill. While I was gone, Dawn (our server) handed my dad a sign. It was meant to be a joke. It says, "Free to ANY home!" Meaning whoever wants to take him home, can. Dawn snapped a photo and shared it with us. I would have hoped that my dad would know not to keep the sign up while we were gone! Forget it. He had it up for many minutes, and he had restaurant patrons coming up to him to ask him if he was okay or needed help! Honestly one day, I am going to get in trouble because people will think that I did this on purpose or I am not providing him quality care. If they only knew. Needless to say, no one offered to take him home. Instead, he got many chuckles from people walking passed him, and he thought that was funny. 

Friday, September 1, 2023

Friday, September 1, 2023

Tonight's picture was taken on September 1, 2009. I will never forget this day. Peter and I were struggling about Mattie's end of life care. We weren't sure whether Mattie should die at home or in the hospital. What happened? Mattie decided for us. He was in so much pain that he asked to return to the hospital. By that point, it was like our second home and he intuitively understood that he needed much more care than we could provide him at home. This photo was taken in the outpatient clinic, where Mattie was then admitted to the hospital. His art therapists gave him this remote controlled dinosaur and they were desperately trying to engage him and keep his mind off the horrific pain he was in. You can see that Mattie looked very sick and out of it. He was attached to a pain pump, but we got to the point that no amount of narcotics could relieve his suffering. This memory will remain with me always. 

Quote of the day: There is a fine line between challenging yourself and overwhelming yourself. ~ Brittany Burgunder

A childhood cancer diagnosis impacts the whole child and the whole family. September is childhood cancer awareness month and Mattie Miracle is proud to collaborate with the American Psychological Association's Caregiver Wellbeing Special Interest Group to shine a light on the importance of psychosocial care for children with cancer and their families. After years of research and collaboration between pediatric psychologists, oncologists, and more, 15 Standards were published that outline the kinds of psychosocial care that every child and family should receive after a childhood cancer diagnosis.

I am proud to say that there are now Psychosocial Standards of Care because of Mattie Miracle and ultimately because of Mattie Brown and his experience!

It was another winner of a day. I literally never stopped moving. After I got my dad washed and dressed, I brought him downstairs for breakfast. No breakfast is ever consumed in peace, because within minutes of eating (and he eats incredibly fast), he needs to jump up to the bathroom. After the bathroom, I got him in the car and took him to his memory care center. Keep in mind that I never returned to my breakfast (which remained sitting on the table) until about noon. At which point, I had to eat it quickly, because I needed to drive my mom to physical therapy. 

Back to dropping my dad off at his memory care center in the morning.... once that was complete, I went to mail my mom's things, filled the car up with gas, and then went to the grocery store to buy fresh fish. I am trying to do Fish Fridays at home. But fish is that kind of protein which I won't let sit around in the refrigerator. So that means schlepping to the store. Once I brought it home, I prepped the fish and other things for dinner, so that I wasn't scrambling later in the afternoon. 

Once that was done, I folded the laundry and helped my mom with paperwork. Then I got her into the car and off we went to therapy. Once her session was over, my mom wanted to go out for frozen yogurt. I thought I would have time to manage this before picking up my dad. But we got stuck on the highway for an hour because of a car crash miles ahead of us. By the time we got off the highway, I decided to run home first to pick up the tote bag I use when I have my dad in tow (it has a change of clothes, depends, wipes, etc). I was going to chance it and take my dad for frozen yogurt without the bag, but then reality set in. So I went home first. When I saw Peter at home, I asked him to pick my dad up and take him home, because I just did not have the where with all to do it all today. Therefore, I was able to take my mom out for yogurt without my dad with us. 

My mom has now convinced herself that she wants to go away on vacation. Though I would love to do this, I continue to provide the reality check on our situation. My dad doesn't have the stamina to travel anymore. He also has no interest to do this either. If dealing with his dementia isn't hard enough, then his dementia combined with irritable bowel syndrome, is truly over the top. I literally can't figure out how I could take them anywhere, without assistance, and someone to stay with my dad while I toured my mom around to see friends. So without a plan, I am not moving forward with this request. 

My world maybe moving in twenty directions, but I will never forget September 8, 2009. The day our lives permanently changed forever. I can't believe that Mattie will be gone 14 years. Around the anniversary of Mattie's death, we always visit his memorial trees and decorate them. 

Since September is childhood cancer awareness month, and the awareness color is GOLD, I am happy I was able to find a few gold ornaments. But the theme here is really the SUN and Sunflowers. Mattie LOVED drawing and painting the sun and I love sunflowers. They remind me of Team Mattie, who gave me plenty of sunflowers between hospital admissions. Therefore, these ornaments resonated with me for the tree. 

Of course those of you who have been on this journey with me from the beginning, know that Mattie LOVED donuts! In fact, while on chemo, he went through a vanilla frosted donut phase! He practically ate them daily. Since Mattie refused food most days, we gave him whatever he wanted to eat in order to get calories into him! Therefore donuts on the memorial tree are very symbolic of Mattie, his journey, and his spirit to live life to the fullest. 

Thursday, August 31, 2023

Thursday, August 31, 2023

Tonight's picture was taken on August 7, 2008. It was Mattie's first week in the hospital. That day, Linda (Mattie's child life specialist) set up a painting project right outside Mattie's hospital room. Back then, the hospital did not have a playroom, so there was really no space for the children to congregate and play. When given the opportunity to paint something, Mattie decided to paint the sun and the earth. It is no surprise why the SUN became the symbol of Mattie Miracle. Mattie incorporated the sun in practically every drawing and painting he ever created. 

Quote of the day: To tie a knot at the end of your rope means that you have a rope as well as the ability to tie a knot. And while that’s not necessarily great news, imagine what things would be like without a rope or ability. ~ Craig D. Lounsbrough

Last night, my lifetime friend, Karen, asked me..... did you see the Blue Moon? When she said that, I immediately thought of my maternal grandmother who used the expression... "once in a blue moon" all the time! But as I have learned (thanks Karen!), a blue moon refers to the second FULL moon that appears in one calendar month. 

I went outside to look for the moon when I brought Sunny inside for the night. But I did not see it. Then I immediately thought while in my bedroom..... look outside at the front of the house. Sure enough my big Mattie Moon was there to greet me. Right through my bedroom blinds. It seemed like a very meaningful way to end the day, with Mattie and me thinking of each other. 

When I woke up this morning, I was greeted by this photo in a text message. The woman you see here is Amanda Thompson. She is one of the authors of the Psychosocial Standards of Care. She was doing a presentation in Scotland at the European Pediatric Psychology Meeting. Looks whose photo is on the screen? Mattie made it to Scotland!!!! As the anniversary of Mattie's death is upon us in a week, it is very meaningful to us to receive these reminders of his legacy work. 

It was another full day of running around. I took my parents to the podiatrist today, as my dad qualifies for a pair of shoes through Medicare. Medicare pays for shoes once a year for older patients with diabetes. The doctor literally measured my dad's feet and used an I-pad to take images that created a 3-D model of his feet. What I have learned is that his current shoes are TOO tight on him. Which is ironic since he got these shoes from his podiatrist in Los Angeles. I have no idea if that doctor measured my dad's feet or what, but today's podiatrist chastised me for selecting shoes that didn't fit my dad properly. Needless to say, I was in NO MOOD to be talked down to, so I pushed back. The podiatrist is edgy, so you can imagine together, we are quite a combination. This is not the first mistake my dad's podiatrist in Los Angeles made. Which is why I am glad I am now overseeing his care, and can proactively address issues like infections (which he had on his feet) and shoes. 

My dad stopped taking steroids on Sunday. The steroids helped him tremendously with his allergic reaction to antibiotics. But now we are dealing with the consequences of stopping them. He is lethargic, chronically exhausted, and seems stupefied. This reaction has happened in the past, it doesn't surprise me, but all I can say is WOW! 

It is now 6:30pm, and I am escaping the house to get fresh air and walk. As the weather starts turning colder, I am not sure what I am going to do. Because for me the wonderful part of walking is being surrounded by nature and away from the house. 

Wednesday, August 30, 2023

Wednesday, August 30, 2023

Tonight's picture was taken in August of 2008. It was Mattie's first month in treatment and early on we learned that Mattie couldn't endure any scans without sedation. In fact, I blame Mattie's oncologist who did not listen to me from the beginning. I explained to him that Mattie had sensory issues and therefore I did not feel he could handle a tight confined space, that produced loud noises. The doctor thought I was an alarmist and said with verbal coaching, Mattie would be fine. Not only wasn't Mattie fine, but there was no amount of coaching that could alleviate Mattie's fears. So without sedation, getting an MRI or CT scan was close to impossible. This was when the sedation team became a part of our lives. Debbi was the nurse who headed pediatric sedation and she became a crucial part of our world. Throughout our 14 month journey, Debbi rode right along side us with every scan or procedure. 

Quote of the day: If you have not been driven to the end of yourself at some point in your life, it is likely that you have not given the whole of yourself at any time in your life. ~ Craig D. Lounsbrough

It has been another long day here! My dad had an appointment with the dermatologist today. I can't tell you how many times he asked me about this appointment. Even after the appointment was over, he repeatedly asked me what the doctor said, then of course 30 minutes later forgot that he ever saw her to begin with. I wanted him to see the doctor because of his non-stop bug bites, itching, and then severe allergic reaction to the scratching. She is my doctor, but honestly I found her NO help today regarding my dad. She had no suggestions on how to manage my dad, or let's put it this way, no new ideas from what I am already doing. 

All I know is I have had over a month of dealing with itching, scratching, hives, allergic reactions, and being on antibiotics, followed by steroids (because of a severe allergic reaction to the antibiotics). If managing my dad's skin condition was all I do each day, then that would be fine, but I have so much else on my plate. 

Later in the day, because Peter is away in Chicago on business, I took my parents out for an early dinner. I can't tell you how many times I was up and down to the bathroom with my dad while at the restaurant. Then the last trip to the bathroom, he needed to be completely changed because he had an irritable bowel attack. I am quite certain the average person wouldn't be taking my dad out, as you never know what you are going to get with him. My parents are lucky that I have a strong stomach and constitution for dealing with bathroom issues, and am able to continue eating! My dad used to love food and the dining experience, like me, but now, he just goes through the motions. It is a sad commentary. My dad also eats super fast and then while waiting for the rest of us to catch up, he closes his eyes and sleeps at the table. If I took my life into full account, it would be very depressing, exhausting, overwhelming, and hopeless. Which is why I try not to look at the full picture. I take each moment as it comes. Meanwhile, I am headed for a walk now, as I need this time to regroup. 

Tuesday, August 29, 2023

Tuesday, August 29, 2023 -- Mattie died 726 weeks ago today.

Tonight's picture was taken in August of 2008. Mattie was with his physical therapist, Anna. Since Mattie just started treatment, Mattie and Anna were getting to know each other. Anna understood that he was going to have several limb salvaging surgeries, so in essence she wanted to get Mattie used to being in a wheelchair. Keep in mind that at this point Mattie was fully capable of walking. But Anna wanted him to experience doing his therapy in a wheelchair and to work his arm muscles. I must admit when I first saw the wheelchair come out, I was taken aback. I had NO insight for what our future was going to hold, and the simple fact that after his surgeries Mattie never independently walked again. I am happy that I had no concept of this reality back in August of 2008. I was naïve then and was still wrapping my head around the cancer diagnosis. 

Quote of the day: The most critical time in any battle is not when I’m fatigued, it’s when I no longer care. ~ Craig D. Lounsbrough

This morning after my usual routine of one task after the other, I decided to sit outside on our porch for about two hours. I brought a book with me. My dad was at his memory care center and my mom was exhausted. Though I would have loved to close my eyes and rest, I just can't. I am too wired and conditioned to be up by day, that resting is impossible. The inability to shut down, gives me insight into my level of agitation and anxiety. 

I started reading a book by a local author. I run into this woman all the time at our local Starbucks. We have chatted with her numerous times, as she has given her seat to my mom on several occasions. I decided to buy her two books, particularly because the books are about relationships and finding one's self. They are both works of fiction. I must admit that I have struggled to get into her book, as I don't quite relate to her main character. A woman who has left home, moved out of the country, left her responsibilities behind, in order to find herself. She admits to being self focused and selfish and that this is her time in her life. Mind you she is only in her 30s. This is a character I just can't relate to and I will give it a few more chapters to try to find some redemption in the story line. 

While sitting outside, I had the hummingbird feeder overhead and hummingbirds buzzing all around me. They are fearless little creatures!

I caught one in mid-flight. Do you see him?

This afternoon, I picked up my dad and I took my parents to the Cheesecake Factory. It is about ten minutes from our home. I was too tired to make the trip I originally had planned to Alexandria, VA. Fortunately I decided to stay close to home, because my dad seemed wiped out. Once I got him in the car and drove to the restaurant, he needed to use the restroom right away. I have told his memory care center to take my dad to the bathroom before sending him out to the car. I could be talking to myself, because the problem continues to happen. Not only did he have to go to the bathroom, but I needed to change him, as he was sitting in a completely wet pad/depends. Needless to say, I wrote to the center immediately and told them that this problem happened yet again. Eating with my dad today was less than peaceful. I was jumping up and down constantly and now I feel like whatever I have eaten is making me sick. So once I finish typing, I am headed to walk and get fresh air, in hopes that this helps. 

Monday, August 28, 2023

Monday, August 28, 2023

Tonight's picture was taken in August of 2008. Mattie was in his first month of treatment and that day we were home from the hospital. As Mattie's treatment wore on, our days at home dwindled, since Mattie usually was quite sick from the chemotherapy. In any case, that day, one of Mattie's friends dropped off a gift. A big bubble maker! Since we were having a tough day inside of our home, we went outside for fresh air and a change of scenery. Mattie was eager to see how the bubble maker worked and Peter took on the challenge of figuring out how to get this gizmo to work. 

Quote of the day: Life doesn’t get easier or more forgiving, we get stronger and more resilient. ~ Steve Maraboli

Sunny is taking a week long break from being on chemotherapy. His gums are swollen, he has no appetite, his legs are wobbly, and he is losing weight. The vet hopes that a pause in treatment will enable him to recover. We are putting a medication in his water to reduce the swelling in his gums, he is on an oral anti-inflammatory for his hind legs, and we are trying to feed him soft foods. Has his appetite come back? I would say no, but this evening he has surprised me. Sunny walked through my office and into a sitting room where we feed the cat. Sunny tracked down the cat's food. I frankly don't care if Sunny eats Indie's food. Dogs can eat cat food, but cats can not eat dog food. As cats need a special enzyme that is only found in cat food. Sunny ate two cans of Fancy Feast!!! So tomorrow, I am going to the store to buy canned dog food. Typically Sunny doesn't like dog food, but I am following his lead! I am also thinking that I will feed Sunny where I feed Indie, because I think he feels like the cat is getting a special treat in there, and he wants to know why isn't he as well. Sunny is that psychologically deep. 

This morning after doing a ton of chores, I took my mom out to lunch. We try to visit Tiffany at the Neiman Marcus Café once a week. She treats us so well and is fond of my mom. In fact, Tiffany was telling me that when she sees us, she thinks about her mom, who is Taiwan. Tiffany is a long way from home. She told me that she serves many people each week, but she is so impressed that I take my mom out and dine with her. She says so many adult children do not get along well with their mothers, much less would want to spend time eating with them. Interesting observation. 

Though I do not order them, Tiffany gives me free cookies each week. They don't always look the same. Today I got two giant chocolate chip cookies. It is gifts like this, which are unsolicited, that truly are touching to me. The people we interact with at our local restaurants observe my life and their acts of kindness are deeply appreciated and they make me feel less alone and appreciated. 

Meanwhile, I have emails piling up all around me. Text messages I can respond to, but emails are more challenging to me. I am not sure why. Part of it is I have little to no time, but the other part is how I am feeling mentally and emotionally. I just don't have the ability to focus and concentrate. I am hoping people will understand what I am up against, but what I know is this is not typically how I operate. In the past, I could return all messages that day or by the next day. Right now I am just working hard to manage one day at a time. 

Sunday, August 27, 2023

Sunday, August 27, 2023

Tonight's picture was taken in August of 2008. This was one of the first ceiling tiles we worked on as a family. Mattie's art therapists knew he loved Scooby Doo. So they stenciled a scene on a ceiling tile, and we worked to paint it in. This tile eventually went on the ceiling of one of the HEM/ONC clinic rooms. Whenever Mattie was in that room, he would comment..... we did this tile together. 

Quote of the day: It is only in our darkest hours that we may discover the true strength of the brilliant light within ourselves that can never, ever, be dimmed. ~ Doe Zantamata

I am trying to come up with activities that we can all do together, that are more stimulating, that get us to talk, and interact. I asked my dad if he would try to do a puzzle. He said yes, and wanted to do a map of the USA. So I got this puzzle and we started it yesterday and finished it today.

This 250 piece puzzle is designed for ages 8 years old and up. Mattie used to be a wiz kid at puzzles and I wish he were here to help coach us along. 

This is the finished product. Ironically if you asked my dad whether he enjoyed working on this yesterday, he would have said, "No!" Today, I took a different tactic with him. Instead of asking him to help do the puzzle, I had him watch my mom and I. I thought he would have been bored or disengaged, but he seemed to like the process of watching us, and for him, he truly was engaged in the activity. After we assembled the puzzle, we reviewed the states and where they were located. To make a long story short, my parents requested more puzzles, which to me is a great activity, especially as the weather will begin to turn cooler. 

How I wish my parents could entertain themselves, engage with each other, or help support one another. Those days are long gone. So in addition to being their physical caregiver, there is a great deal of emotional work and companionship. Needless to say, they are lucky that I have the patience, will power, fortitude, and strength to handle this routine, because to be quite honest I am not sure every adult child could or would take this on.