Saturday, August 12, 2023

Saturday, August 12, 2023

Tonight's picture was taken in August of 2009. We were at the Lego Store in our local mall. That evening, Mattie's child life specialist arranged for a once in a lifetime chance to go into the store after hours and work with two master Lego builders. These guys told Mattie that he could design something of his choosing. They offered Mattie any kit in the store, but nothing interested him. In all honestly that year, we practically had every kit available, as we used to buy them to keep all of us busy in the hospital. So instead of a kit, Mattie requested to design a NYC taxi. This taxi is still on display in my office and I will never forget that moment in time. 

Quote of the day: You are today where your thoughts have brought you; you will be tomorrow where your thoughts take you. ~ James Allen

The highlight of my day was receiving watercolor sketches from Kim T. Richards. She is the wonderful artist we have commissioned to paint four oil paintings of our property. The goal is to display these original pieces of art in our family room. This room has a huge wall and for almost two years now, it had been dormant. None of us could agree on what should be hung on this wall. Thankfully I met Kim, and after viewing her works, this notion just came to me... capture the beauty of the property. See this lovely orange Adirondack chair? When we bought the house, this chair was green and stuck in the distance between the trees. I asked Peter to paint it a Mattie Miracle orange and now this chair sits front and center in our garden. 

The beauty of Peter's rose garden and plantings. 

Our front door! There are three large watering cans sitting on our front stoop. They are orange, red, and yellow. Mattie Miracle colors! They resonated with Kim. 

Another view of our backyard. 

There will be more details with oil paint, but I have to say the watercolors are stunning. 

Another angle of the property. Kim gave us 11 sketches, all from different angles. We will have to determine what resonates with us, because the final design for our wall will be four paintings. Nonetheless, I am appreciating and enjoying the creative process of how a scene gets captured and eventually turned into an oil on canvas piece.  

Friday, August 11, 2023

Friday, August 11, 2023

Tonight's picture was taken on August 26, 2009. We were home and debating whether to do end of life care at home or at the hospital. A few days after this photo was taken, Mattie made the decision! He wanted to go back to the hospital. We never discussed the terminal diagnosis with Mattie, but I believe he had an intuitive sense that he was dying. Or as much as a 7 year old can comprehend of dying. That day, Mattie was sitting on our couch with a large paper replica of a roach! Mattie knew how much I hated bugs, so this inspired him to love them more. In his hand was a giant fly swatter. He got this swatter at his 7th birthday party held at my friend Christine's home. It was a party to remember and it brought Mattie great happiness. It was the last birthday we celebrated together, and I am happy we had this memorable moment, as it has to last a lifetime. 

Quote of the day: Cooking is like painting or writing a song. Just as there are only so many notes or colors, there are only so many flavors—it’s how you combine them that sets you apart. ~ Wolfgang Puck

I am trying to do more cooking at home. As this is the one time of day we all can be together. Cooking is one thing I have always done throughout my married life. I am not sure if I started off as a good cook when I first got married. I definitely always understood food and LOVED to eat, which helps. However, over time, I think I have learned to master the art of cooking. It is an outlet, a form of creativity and can bring happiness to others. To me eating good food is still a special gift and no matter how exhausted I am, I appreciate it! This morning I went shopping and came home with wild caught Red Snapper. I turned it into a Mediterranean Fish Dish! To me everything goes better with olives!

I have been trying to explore starch dishes, other than potatoes and corn. In the summer months, I really do not serve a lot of potatoes and though I make a lot of corn, I wanted to expand my horizons. So tonight I experimented with gourmet couscous. It is slightly bigger than regular couscous. I added fresh arugula, mint, parsley, cucumbers, tomatoes and a wonderful dressing of lemon, lemon zest, olive oil and Dijon mustard. We shall see how this goes over tonight! I am sure my dad will pick out all the green things he sees and then line his plate with it! 

Thursday, August 10, 2023

Thursday, August 10, 2023

Tonight's picture was taken on August 29, 2009. Keep in mind that Mattie died days later on September 8. My parents and Karen came into town to lend support and to help engage Mattie. As you can see my living room was filled to capacity with toys and things! When I look at this photo, I just can't believe this is my life. I have spent more time grieving than caring for Mattie well or with cancer. It is a hard reality to face. 

Quote of the day: Hard times don’t create heroes. It is during the hard times when the ‘hero’ within us is revealed. ~ Bob Riley

My dad's physical therapist is back from vacation and he had his first session in a long time. What I immediately noticed is after an hour of exercise, he was far more alert and engaged all day! My joke with him is he needs PT every day! Not sure he cared for that notion. 

Peter has been in Philadelphia the past two days. He is on his way home as I type this blog. I enjoyed seeing photos from his business dinner last night. As he went to a restaurant I dined at with my lifetime friend Karen in July of 2019. Talula's Garden is worth the trip if you are in Philly and request to sit outside in the actual garden. 

Peter's parents are coming to visit with us next week for a few days. To try to make their trip comfortable, I have already started on prepping beds and getting things ready. Naturally my everyday routine is challenging on a good day, so hosting guests requires more advanced prep work to make things go smoothly. I am planning to cook two dinners at home and made reservations to go out the other two nights. In my household, going out to eat is the day's adventure, so I must admit I get frustrated when hosting people that I can't get out of the house and do something different with them. Naturally people understand what I am up against, yet the angst I feel can sometimes overtake me. So my goal this upcoming week is to try to manage the best that I can.

Wednesday, August 9, 2023

Wednesday,  August 9, 2023

Tonight's picture was taken in August of 2009. At this point in time we knew that Mattie's cancer diagnosis was terminal. We bought him this ride-on vehicle, as this was something he always wanted. Mattie was eager to drive "Speedy Red," but I was nervous about him driving alone. After all, he was attached to a pain pump and tank of oxygen. I wasn't sure if Mattie could grasp the concept of the gas pedal, the brake, and steering. So I was his co-pilot! The car wasn't meant for an adult, so I literally squeezed myself inside. Nonetheless what I can say was that Mattie was a born driver. He had a natural instinct for the mechanics of driving and within minutes he just got it! He went zooming around our commons area, and Speedy Red brought moments of joy, when there was very little joy in our lives. 

Quote of the day: Negative emotions like loneliness, envy, and guilt have an important role to play in a happy life; they're big, flashing signs that something needs to change. ~ Gretchen Rubin

If tonight's quote is accurate, then I have red flashing lights all around me. In any given day, I am filled with all sorts of emotions. Loneliness, envy, and guilt are definitely on the list. For the most part, I try not to be envious of others and their freedoms. Some days I think... it must be nice to sleep late. It must be nice to go out to dinner without balancing and juggling needs and bathroom accidents, or better yet it must be nice to travel and see something different for a change. I can feel all these things, but know they are all not obtainable. Naturally I had these same feelings when Mattie had cancer. They aren't new to me. But what is clear is the commonality of all types of intense caregiving is isolation and exhaustion.  

When I woke my dad up this morning, I was horrified to see his foot! I know he had been scratching at his foot for a couple of days. But I put cortisone cream on it last night and wrapped his foot up to prevent him from touching it. Not only did he remove the bandages during the night, he continued to scratch. The sheets, blanket, and him were covered in blood and ooze from his blisters. It was a horror show and not how I wanted the morning to start. 

Needless to say, I contacted the doctor and asked if I could bring my dad to my mom's already scheduled appointment. I felt like he needed medical attention before this started spreading. Mind you I just dealt with this nightmare three weeks ago. My dad scratched at bites on his hand and arm. It took three weeks for those sores to heal, and that only happened with antibiotics, steroids, and constant bandage changes. I thought I was going to get a break from this, but NO! I am right back at it again. 

The doctor we are working with is new to us. My parent's doctor retired, and this new fellow absorbed all of the former doctor's patients. In any case, he went over my mom's medical history and of course NO ONE brought up dementia and memory issues. So I had to! He gave her a cognitive assessment on the spot and of course she did well! I truly think these assessments need to be thrown out the window because they are not helpful in determining true daily functioning. Any case, after the appointment was over, I emailed the doctor my mom's neurological testing results and reports. They depict a different picture! My mom has elected not to pursue any of the neurologist's plan of care, but I have told her, if I continue to see decline, we will have to address this, and I wanted today's doctor to be in the loop!

I am truly balancing a ton and my mom keeps peppering me. When I took them out to dinner tonight, she said to me that I am always complaining. Yes I complain on occasion, but not all the time. I am not sure what she expects. I am human and most humans do not do well with a total lack of freedom, isolation, and non stop work for almost two years. She has no insight or empathy and unfortunately I let her have it tonight. I told her she is very self focused. Always has been. I have had the privilege of being a mom for 7 years and during that time, my priority was always Mattie. His needs came first. It was just how I operated. I told me mom that she is not like this. She then asked my dad for feedback and he did not disagree with what I was saying. Needless to say, after lashing out, I felt guilty and not good about what I did. My mom maybe hurtful and self focused, but I do not have to follow suit. 

Tuesday, August 8, 2023

Tuesday, August 8, 2023 -- Mattie died 723 weeks ago today!

Tonight's picture was taken in August of 2009. It is a follow up photo to last night's posting. Last night, the photo showed Peter wheeling Mattie outside to our deck to view his big surprise. Here it was.... a big ride-on vehicle. Mattie always wanted one of these battery powered cars. Pre-cancer, we refused such a request. But as Mattie's last wish, we made sure it happened. Mattie named this red car, 'Speedy Red.' Speedy Red remained on our deck for an entire year after Mattie died. The car literally died from exposure to the weather. I just couldn't and did not have the heart to move, donate, or dispose of this vehicle. 

Quote of the day: On your darkest days do not try to see the end of the tunnel by looking far ahead. Focus only on where you are right now. Then carefully take one step at a time, by placing just one foot in front of the other. Before you know it, you will turn that corner. ~ Anthon St. Maarten

We had horrific storms yesterday. Three in a row. Poor Sunny took to the basement at 11pm, he couldn't take it anymore. Today I made sure to carve out time for myself to take a walk. After walking, I stopped by my neighbor's home. They are away on vacation and I am left in charge of the property. They gift me a homemade pie for my efforts! I assure you I am happy to work for pie or chocolate! Each day I visit my neighbor's home, I am greeted by this painted lady, my name for this turtle. She doesn't move very far, and I typically find her in the same location. 

I worked about 40 minutes at my neighbor's property, picking up sticks and branches. This is all the debris that accumulated from yesterday's storms. Literally there was so much wood that I filled up a greens bin and then resorted to making piles of branches at the curb. 

One pile! This may not seem like a big deal, but some of these branches are taller than me and are heavy.

The second pile! It is hard to believe that all of this fell yesterday! I check the property on a regular basis and always pick up sticks along the way. So I know this debris is from yesterday alone. 

Later in the day, I went into our backyard and collected this pile of sticks and brought it to the curb for tomorrow's pick up. Needless to say, I feel like I got quite the work out today. 

I certainly have other work piling up around me, but I just can't focus on it right now. There are times when I am too tired and too overwhelmed to be of much mental use. Instead of getting frustrated with myself, I just pause, and I know in time, I will be able to regroup and address it. This philosophy of being patient with myself just did not happen. I have evolved into this, because after Mattie died my work habits, ability to concentrate, and focus changed dramatically. I once was able to multi-task. I could write, listen to music or people talking, and concentrate. NOT after Mattie died. His cancer experience changed me. I can't read a solitary word without complete silence now. I remember this being a problem when I ran my licensure board meetings. Which is why the staff knew, if they wanted me to read something, I had to receive it ahead of time. Otherwise, I would really struggle. Do I get frustrated with this change in myself? Certainly, YES! But at least I am aware of this issue and know what I need to do to compensate for this change. Any one who thinks that the psychosocial issues end for parents after their child's cancer journey is technically over, is VERY WRONG. This is just one simple example to prove my point. 

Monday, August 7, 2023

Monday, August 7, 2023

Tonight's picture was taken on August 8, 2009. Just three days after we learned that Mattie's cancer had metastasized throughout his body. That day, we bought Mattie a big surprise. Something that he always wanted, but we never even considered purchasing for him pre-cancer. Mainly because we thought it was too expensive and he would lose interest in it! It was a big ride-on vehicle, basically a battery powered car! Mattie always had a fascination with anything that had a wheel! Any case, in this photo, you see Peter wheeling Mattie out to our patio. The big box with the vehicle was awaiting him, as this was his last wish, which we were determined to grant. I will show you the follow up photo to this scene tomorrow on the blog. 

Quote of the day: Experienced and recent caregiving daughters, respectively, showed an increase over time in depressive symptomatology and long-term depression. ~ Jamila Bookwala

I had the opportunity to talk to a fellow caregiver today. It is amazing how we talk a language that we immediately understand. As if we have been trained in the art of "caregiving" communication and reading between the lines. What I do know is caregiving for older adults, especially those with dementia is grueling, both physically and emotionally. Mainly because rationalization and empathy from the person with dementia toward another person are gone! The main focus becomes one's self and one's needs. It is not surprising that:

1. 80% of caregivers reported strains on their relationships
2. 25% of divorced caregivers said caregiving played a major role in their divorce

Relationship pressures from becoming a primary caregiver for an older adult come in a variety of forms, including:

• Financial pressures from medical bills, loss of income due to the time needed to provide care, or the need to help with day-to-day expenses
• The physical toll of caring for someone who needs help with daily tasks, as well as from spreading yourself too thin trying to manage other family obligations and an the older adult
• Time constraints resulting from added responsibilities
• The emotional consequences of not having enough time or energy to invest in your relationships

Do family members or people like me, for example, set out to be caregivers? My hunch is the answer is NO! Most people wouldn't willingly sign up to perform such selfless work day in and day out. Work that changes every aspect of your life and as a result sucks the freedom and control out of one's existence. NO, NO ONE willingly signs up for this! But the question is what do you do when faced with this quandary and a loved one needs help? There are always options and family members have to do what feels right for them. But what I do know is there are nearly 48 million caregivers caring for someone in the USA, and nearly one in five (19%) are providing unpaid care to an adult with health or functional needs. More Americans (24%) are caring for more than one person. So though my issues may seem unique, they are quite common, and yet the way I look at this is I have already provided the most horrific kind of caregiving. I provided care to a child with cancer, and then watched Mattie die in my arms (yes I heard the machine flat line, only after we had to put Mattie into a coma with propofol). 

I could ask why is this happening to me yet again, and can my life sustain yet another round of intense caregiving? The verdict is still out. But what I do know is from Mattie's care, I learned that I have to take it one day at a time. If I evaluate the full picture, it truly is overwhelming, depressing, and not sustainable. 

Sunday, August 6, 2023

Sunday, August 6, 2023

Tonight's picture was taken in August of 2009. Specifically August 6th. I know this exact moment in time. The day before we had found out that Mattie's cancer had metastasized   all over his body. On August 6th, we met with his doctor to discuss end of life care. As you can imagine, it was a hateful conversation and all I could think of was modern medicine is NOT very modern! Children should not be dying from cancer. We met with Mattie's doctor without Mattie being present. While we were in the meeting, everyone tried to occupy Mattie. In fact, Kathleen (kneeling on the left) was Mattie's nurse from the in-patient unit. Even she came downstairs to the outpatient clinic to lend support. What you see in this photo, was Peter and me coming back from the meeting with the doctor. Mattie presented us with things he created while we were away, and as you can clearly see, Mattie was studying our faces to try to read what was going on! Needless to say we were absolutely shell shocked. 

Quote of the day: There are no great people in this world, only great challenges which ordinary people rise to meet. ~ William Frederick Halsey Jr.

One of the wonderful things about where we live in the animal life. We get daily visits from hummingbirds. I absolutely love watching these delicate creatures. They come visit us every spring and summer and they seem to just know the location of the feeders! They happen to be finicky about their sugar water, and want fresh water every two weeks. This weekend I cleaned out both feeders and gave them a new supply. You should see these birds as I take down the feeders, clean them, and then put them back up. They buzz all around me during the entire process and eagerly await me to come back out to replenish their food! 

Peter spent all weekend trimming bushes and trees. Given that we have a lot of greenery to maintain, this was a huge job. Thankfully this is something Peter likes to do, but it is labor intensive and with the heat and humidity, it can be overwhelming. 

Of course no day would be complete in the mid-Atlantic region without a storm! With our high heat and humidity, we practically are assured an afternoon storm each summer day. Storms like this used to bother Sunny, but the chemotherapy has definitely affected his ability to hear. So our once frightened pooch, is now calm as a cucumber. 

One of the projects Mattie Miracle is involved in is a nationwide research study with Nemours Children's Health (Delaware) and Momcology, with funding from the B+ Foundation. We are excited that this three year long project will assess the implementation of the Psychosocial Standards of Care at treatment sites around the Country. Over the last two weeks, we have worked on creating a special QR code that directs people to the published Standards and then created this infographic to illustrate the four areas of focus within the Standards as well as the specifics covered in each area. We made this infographic into magnets and these magnets will be used at conferences and shared with psychosocial team members at hospitals.