Saturday, January 25, 2025

Saturday, January 25, 2025

Tonight's picture was taken in January of 2009. Mattie was in between hospital treatments. My parents were visiting, and we took Mattie out to one of his favorite restaurants. This particular restaurant had a miniature train that chugged along above the heads of diners. The train went around the entire restaurant. Mattie absolutely loved when the train was working and naturally I loved watching Mattie taking it all in!

Quote of the day: Grief is the last act of love we can give to those we loved. Where there is deep grief, there was great love. ~ Anonymous 

I recently came across a top ten list that suggests ways to cope with grief and loss. For the most part, I am not a list person, but this particular list caught my attention. The first three things on the list were:

1. Take a walk everyday 
2. Record THREE things you did today
3. Spend thirty minutes engaged with the world

What I liked about the first three things on the list is that they are doable and have merit. I used to love to walk with my buddy, Sunny. When Sunny died on January 10, 2024, that was the end of my walking. I haven't been on a walk since! Yet walking and physical movement are beneficial not only for one's health, but to manage feelings and emotions. I am ruminating about number one on this list and trying to figure out how I want to re-integrate walking back into my life. Right now, I am just so overwhelmed with one issue and chore after the other, that walking isn't anywhere on my radar scope. 

The second item on the list, entails recording three things you do each day. I think is a fabulous idea. Why? Because I think by writing down three things, it is a reminder that we are living and getting things done. The author of this list mentioned that the three things could be big or small. When depressed, just getting out of bed is an enormous task and accomplishment. So what I liked about this particular item is that it applies to all of us in some way. If we are living and breathing, we are doing something that is list worthy. 

The third item on the list invites us to engage with the world. This could be active or passive engagement. It doesn't mean you have to leave the house and interact with people, it could be a passive interaction like watching the news for thirty minutes or reading an article. Any activity that gets us to absorb information about the world around us, will enable us to see that while we maybe grieving or traumatized, the world continues to evolve. I understood the author's perspective on this, as he felt it is important for us to understand that our pain is not the only thing happening around us. I have mixed feelings about that notion, because when you are actively coping with grief and trauma, it is natural to shut the world out, because truthfully the only thing you can focus upon and manage is yourself. Taking on more data from the world around us may not necessarily be helpful. 

That said, I think engaging in the world in some way is a good thing, it is life affirming, and more importantly it is a "diversion," as I like to call it! Diversions are the only way to survive grief, loss, and trauma. There is NO POSSIBLE WAY to sit in pain 24/7. There have to be moments where we pause, in order to regroup. Such pauses, I call diversions. Diversions can be anything from physical or social activities to tasks. Fortunately with caregiving, I am inundated with diversions, otherwise, given the host of things I am facing now, I am not sure I could emotionally make it through the day! 

In light of #2 on the list, the three things I did today that meant something to me are: 

1. The snow has caused one of my walkway stone pavers to pop up. In popping up, it has prevented my backyard gate from closing. Today, I went outside with tools and was able to lift the heavy paver myself. I moved it enough so that I could get the gate closed. That said, I couldn't get the paver back into place. The cold has impacted the ground and the stone, and therefore, I will need help from our landscaper in the spring to correct this issue, because as it currently is, someone will fall over these stones. Part of me doesn't want to give up on a solution myself, and as it gets warmer, I may go at it again, but today I knew my limits, as the stone is heavy. 
2. I had several conversations today with my health insurer. Recently I had to purchase a health plan for myself. That may not sound like a big deal, but to me it was, as I have never had to make sure decisions for myself. I figured it out over about a month and today I got my new health card in the mail. Of course that meant establishing a portal account, and that is where I ran into problems. However, I spoke to three tech people, and together we worked it out! 
3. A friend reached out to me today, and was talking about irritable bowel syndrome. Something I unfortunately know a lot about from my caregiving experience. I sent my friend several ideas on how to manage the disease. I loved her response to me...'What notion you don't know about, a lotion or a potion, for a commotion is as vast as an ocean.' Translating.... she is saying I am resourceful! A compliment, which meant a lot to me!

Friday, January 24, 2025

Friday, January 24, 2025

Tonight's picture was taken in January of 2009. We took Mattie to NY City to begin his experimental treatment. In between treatments, we took Mattie sight seeing. That day's adventure, was going in a water taxi on the Hudson River. Mattie LOVED boats. In fact, if you asked him, he would have told you he was saving money in his piggy bank to purchase a boat! NOT a toy boat, but a real one. Which was why I used to call him, "Captain Mattie!" What is hard to believe is that a week later, US Airways Flight 1549, crashed into the River after hitting a flock of birds. It is truly remarkable and scary that we came so close to witnessing that tragedy. 

Quote of the day: A season of loneliness and isolation is when the caterpillar gets its wings. Remember that next time you feel alone. ~ Mandy Hale 

Our healthcare system is absolutely insufficient to ineffective at managing the needs of older adults. If you doubt what I am saying, just take note at your friend or family member's next hospitalization. Hospitals move quickly, there are a ton of people involved in a patient's care, many of whom don't talk to each other, and therefore the one doing the coordination of care is who???? THE FAMILY MEMBER! No one in the hospital is going to sit down with an older patient and patiently explain issues repeatedly. It actually frightens me to see older adults in the hospital alone.

Tonight at dinner, we were reflecting on the challenges of getting older. My mom was talking about all sorts of options like long term care insurance and so forth! But as I reminded her.... look who is doing the care of her and my dad? It is me. I am NOT unique! There are thousands of family caregivers all over this country, doing exactly what I am doing! Does having long term care insurance help? Sure, it can! But as I reminded her, NO insurance (including Medicare) is going to provide 24/7 caregiving. This is where having a spouse and children are so important. Because at the end of the day, the actual work falls onto the family. 

This of course left me with the sickening feeling that unlike my parents, I will be alone. My small family is no longer and naturally this weighs on my mind. Caregiving isn't for the meek, and no friend is going to take on such an intense role. This isn't to knock friendship, it is simply to acknowledge the incredible commitment, time, and energy needed to provide care. 

When these intense moments of anxiety about the future unfold, I literally have to press a pause button within my mind, otherwise, I would not be able to function and carry on with the multitude of tasks I perform on any given day. 

Just when I was feeling overwhelmed and distraught, I looked outside my office window and saw our outdoor lights on. Do you see the ones by the fireplace? There was a string of outdoor lights that haven't worked for months now! I had my electrician evaluate it in the fall and he told me it would be a big production to try to trace the line in the ground and fix the problem. So I had decided to leave it and have no lights. Tonight, they miraculous went on! What explains this? I am sure there is a logical explanation that perhaps the cold or the snow has activated the lines in some way! However, to me this is a symbolic miracle that when I have lost hope and faith, that even the impossible can somehow be possible. These lights turning on tonight reminded me that there are forces at work that look out for me, and at the center of that force will always be Mattie. 
 

Thursday, January 23, 2025

Thursday, January 23, 2025

Tonight's picture was taken in March of 2006. Mattie was four years old and the flower pot in front of us, we won at his preschool's auction. The reason I wanted that flower pot, was every child in the classroom placed their finger print on the pot using paint. To me it was a beautiful memento and reminder of that preschool year. Mattie was smiling and beaming with happiness that this preschool creation belonged to us. 

Quote of the day: A human being is a part of the whole called by us universe, a part limited in time and space. He experiences himself, his thoughts and feeling as something separated from the rest, a kind of optical delusion of his consciousness. ~ Albert Einstein

Today did not go as I thought it would. I was supposed to meet a friend today for tea while my dad had physical therapy and later in the day, I was supposed to go to my therapy appointment. I was able to do neither. But I have learned basically for the most part not to make plans for myself, because I am just juggling too much. As any full time caregiver knows.... YOU DON'T COME FIRST.

This morning, I noticed my mom was wearing sandals. It is JANUARY and 18 degrees outside! This is NOT sandal weather. For two months now, my mom has been complaining that her big toes were bothering her. I examined them and could see nothing to explain her pain. So this issue continued on for months. I suggested she see my dad's podiatrist, but she refused this suggestion every time I made it. Yesterday, she saw her rehab doctor and truthfully he had no idea what was going on with her feet! But the problem was only getting worse. It has been affecting her walking and the shoes she could wear.  

This morning, I did not take NO for an answer. I picked up the phone and called my dad's podiatrist office. Keep in mind that they see us every 90 days, and they have been working with my dad since 2021. So I have gotten to know the office manager and all the admin folks. Thankfully! Because they could tell I was concerned on the phone today and they squeezed my mom in for a 2pm appointment. So after my dad's physical therapy session at home, I whisked them in the car and drove to the podiatrist. 

It was a good visit and thankfully the issue is nail related. The doctor cut away a lot of her nail and also gave her toe spacers, to prevent toes from rubbing against each other. There is already a marked improvement. One down! What I have discovered over the years is that if you have a foot problem, you really need a foot specialist. Most doctors do not understand the complexity of the foot!

While listening to the news today, I heard a story about a sunfish, at an aquarium in Japan. The aquarium was under renovation and therefore no visitors came to view the fish in MONTHS. 

The aquarium staff were concerned about this sunfish, because he wasn't eating. They tried to understand what was going on with the fish and thought through all the logical causes, such as digestion issues or parasites. But then they thought outside the box!!!! Maybe this fish was lonely? He missed the visitors who came by his tank daily! So the staff taped people cut outs to the tank and guess what? The fish bounced back, began eating, and seemed to be feeling better. 

I am not sure what captured my attention about this story! Was it that we can learn so much from our fish and animal friends? Was it that I admired the staff for thinking outside the box and realizing there maybe a social and emotional component to the fish's illness? Or was it the simple notion that any living and breathing thing needs CONNECTION? The answer is ALL three. 

The power of connection can not be discounted, on a good day, but definitely under times of stress and trauma. I learned this in spades when Mattie was diagnosed with cancer. There was NO WAY we could have survived the horror of childhood cancer without the connection to our Team Mattie community. Which is why Mattie Miracle's tagline is.... IT IS NOT JUST ABOUT THE MEDICINE. Never under estimate the power of social and emotional connections, they may not cure an illness, but I would say the medicine can never be as effective without it! 

 

Wednesday, January 22, 2025

Wednesday, January 22, 2025

Tonight's picture was taken in January of 2009. We took Mattie to New York City to start his experimental treatment. Our team in Washington, DC contacted the NY team to let them know that Mattie LOVED cardboard boxes. They encouraged them to save some for Mattie's visit. They did and they thought that was an ODD request. Look what Mattie built while in the NY clinic. This airplane left the hospital, was placed in a yellow NYC taxi cab, and it came back to the hotel with us. Mattie wanted to take it back to Washington, DC, but we agreed to take photos of it and leave it in NY. I am quite certain the staff at this clinic quickly learned that Mattie was a unique and creative fellow and that wonderful things can be constructed from boxes that would otherwise be thrown out! 

Quote of the day: Emptiness is a symptom of loss. ~ Jean-Paul Sartre

It was a stressful morning because I had to get both of my parents up and in the car by 9:30am, in order for them to make their rehab doctor appointments on time. The appointments are at the hospital, which is over thirty minutes away from us. I can control my dad's schedule, but managing my mom in the morning is hard. When she moved here in 2021, she would get up at the crack of dawn and had much more energy. Now, I think with age and also the grief and trauma we live with, I believe this has greatly impacted her existence. 

We managed to get to the doctor's office and because of the cold, you should see the number of jackets and coats I juggle. My mom wears three and my dad two! To move into the doctor's office, that required the removal of all jackets and coats in order to be examined. This doctor has been working with us since 2022, when my dad was admitted for a pacemaker placement. He always greets me with a hand shake, a smile, and then asks.... how are you doing? He reminds my parents often that they are stable because of the excellent care they receive. 

Throughout the year, I juggle physical therapy sessions for both of my parents. Sometimes they qualify for in-home therapy and other times, my mom at least qualifies for outpatient therapy at the hospital. On an aside, between Mattie and my parents, I have a solid understanding for how the healthcare system works, or doesn't work. It certainly is not a user friendly system for older patients! 

Today, the doctor felt my mom needs physical therapy asap. So in March (I elected for the spring), I will begin once again with driving my mom back and forth to the hospital, most likely for another 8 months of therapy. As for my dad, the doctor is encouraging him to take more responsibility for exercising, but honestly within 30 seconds, my dad won't even remember that conversation. Which is frustrating. The doctor came up with a strategy where my dad would have to sign an exercise contract at home so that he would be more engaged in the process. Again, all that is great, but any time you place a responsibility upon my dad, that means it will be one more task for me to manage.

I think dementia is the kind of disease that isn't truly understood or appreciated. Because it is an invisible disease! A person, like my dad, may look good and seem functioning, but that doesn't mean that is actually the case. So many doctors think my dad showers himself, does all his basic hygiene and takes responsibility for things. Unfortunately that couldn't be further from the truth. It is a great sadness for me to see my parent's disease progressions and knowing one day they won't be with me. 

As tonight's quote points out, emptiness is a symptom of loss. Loss that has happened and even loss that will eventually happen! I face and contend with all sorts of losses daily. Without my parents, I will be alone. The life that I thought I had, is gone, and as you get older, the re-inventing yourself becomes harder on every level. I already had to re-invent myself when Mattie died. It has been a hard reality having to accept that I would no longer actively parent my son and that I have missed out on every typical milestone moment for a mother. At what point is enough, enough?! How much loss and trauma does a person need to absorb? I have no answers, only constant challenges. 

Tuesday, January 21, 2025

Tuesday, January 21, 2025 -- Mattie died 798 weeks ago today.

Tonight's picture was taken in September of 2006. Mattie was four years old and fully on! What was Mattie playing with? Patches cat toy! He was trying to inspire Patches to catch the toy mouse that would come out of the round device, when Mattie pressed a button. But here's the funny thing about this whole interchange! Patches was more focused and interested in Mattie! So in essence, Mattie was watching Patches and Patches was watching Mattie. They were transfixed, not moving, and awaiting who would make the first move. I loved watching, observing, and learning from Mattie!

Quote of the day: Do one thing every day that scares you. ~ Eleanor Roosevelt

Of course I do not know the context in which Mrs. Roosevelt stated this quote, but what I imagine she was referring to was the invitation to push ourselves each day to learn, do, or experience something new. Change and new are scary! You do not need to go through a full blown crisis to feel scared. Most of us have a daily routine. Givens in our lives. After all, it is human nature to count on consistency. To have expectations for how things will work, and when things do not go as we hoped, planned, or thought they would, then what? Then what ensues can be scary! Change forces us out of our comfort zone and tests us in ways we did not think was imaginable. 

The year that Mattie was enduring cancer treatment, for example, I wasn't just doing one thing a day that was scary, I would say it was minute to minute scary. Constantly on edge, making life and death decisions and hoping that whatever was decided would be the correct decision. That was the extreme of scary. But one doesn't have to live through cancer, to be scared! I found that parenting was a series of challenges, even when Mattie was healthy. For example, when Mattie was three years old, he was diagnosed with sensory integration issues (meaning that Mattie's processed sensory information in a very heightened way.... as he had issues with people coming into his physical space, he had sensitivity to noise, was overwhelmed in crowds, and was irritated by textures of clothing or being touched unexpectedly). These issues were significant enough that I sought the help of an occupational therapist. 

Mattie attended occupational therapy twice a week for two years. On an aside, I strongly believe in early intervention..... in Mattie's case, it improved his quality of life. Seeking the help of an occupational therapist pushed me out of my comfort zone. It was hard to admit I needed help, especially when it came to raising Mattie. But pushing through that feeling opened up a whole new world for Mattie and for me. We developed a close bond to this therapist, she worked with both of us each week and taught me strategies to support Mattie. Strategies that worked and bonded us closer together. What would have happened if I did not push myself out of my comfort zone? Well in this case, I think it would have been detrimental for Mattie. By the time Mattie was in kindergarten, his teachers NEVER knew he had sensory integration issues. That was how effective therapy was!

After each occupational therapy session, Mattie's reward, was we would go to the Starbuck's on the corner and he would get a pumpkin muffin and milk. Two of his favorite things. We would go in, sit down, eat muffins, chat, and do puzzles and games together. Why do I bring this up? Because today, while at Starbuck's with my mom, I saw a mom come in with three young children. She was hosting a tutoring/homework session with the girls. Each of the girls got treats and somehow seeing them sitting down, eating, and doing activities with this engaged adult, took me right back in time. Right back to when Mattie was 3 and 4 years old. Ironically though my mom and I go to Starbuck's often, I have never made the connection to the store and Mattie. Not until I saw these girls today. Something about their whole presence jogged my memory. It was like seeing a movie going off in my mind! Reviewing memories can sometimes be scary, they can be emotionally overwhelming, and therefore perhaps it is easier to shelf them!

But like tonight's quote points out, doing something that is scary (within reason), can actually end up being a positive thing. Because I have found evoking and reviewing Mattie's life (though bittersweet as I rather have the boy rather than the memories) keeps him alive in my mind and heart, and in the process, by sharing memories with you, you are also carrying on his beautiful legacy. 

Monday, January 20, 2025

Monday, January 20, 2025

Tonight's picture was taken in December of 2001. I was five months pregnant with Mattie. Keep in mind that three months before this photo was taken 9/11 occurred. I will never forget the fear and anxiety I felt. I was scared for my own safety and the security of the country. Then add to that, I found out that I was pregnant. I did not know if all this stress was going to impact Mattie and I also did not know if I was ever going to be able to meet with an OB/GYN as appointments were canceled due to this national tragedy. When this photo was taken, it was three months later, and we tried to stabilize. As you can see, my fur baby, "Nurse Patches," was in my arms. Patches was an amazing and super bright kitty. She got the name "Nurse Patches," because when I was sick one day with an 102 fever, she stayed with me on my bed the entire time. I felt she was watching over me and was there for support. 

Quote of the day: Loss is simply what happens in life, and the meaning is in us afterwards. ~ David Kessler

 

A friend of mine recently wrote to me and introduced me to David Kessler. She wanted me to see this VIDEO. David is a grief expert and is also a bereaved parent. This video is about six minutes long and worth a watch. 

David mentioned an article he read in the NY Times that asked people in their late nineties how they found happiness and meaning in their lives? The answer was interesting...... they focused on SMALL GOALS and LITTLE MOMENTS of beauty. Not the big milestones so many of us use as benchmarks..... such as jobs, graduations, weddings, having children, etc. However, what happens to these benchmarks or milestones when we are grieving or traumatized? They really become less important, and border on non-existent. 

Instead, David discusses the importance of focusing on micro-pleasures -- the small things around us that keep us connected and bring comfort. Notice he doesn't say.....joy! He gets a gold star from me! Because joy and happiness are NOT words that resonate to any of us in the throes of grief and trauma. 

In the video, he discusses that our brains are hard wired to focus on the bad. However, he challenges us to work on installing the good. Certainly grief and loss of a loved one makes us focus on the negative. But even with all the negative, there is a nugget or two of positives. He suggests three ways to install the good:

1. Identify a positive experience or memory
2. Savory this memory and repeat the story over and over again to yourself
3. Absorb this memory  

I would say this strategy definitely occurs almost naturally over time. It is an evolution of living with grief! I know when Mattie first died, I was very focused on his 14 month battle that we endured. There was a great deal of daily horror that I absorbed and had to be processed. However, over time, even with the memories of these horrors, I was able to tease out the positive. Yes I know that sounds ridiculous..... what kind of positive could possibly result from Mattie's cancer diagnosis, treatment, and death? The positives were the amazing community and human connections we formed during this nightmare. I saw kindness, true friendship, and a community come together to do whatever was possible to help Mattie and my family (e.g., daily meals delivered for us to the hospital for 14 months, gifts of all kinds, birthday parties for Mattie, a community run Mattie March, etc). Which is why even today when I see certain things like sunflowers, for example, it sends me right back in time. Back to the positive, in the midst of great terror. It is through the worst trauma and grief a parent could experience that it enabled me to feel and be the recipient of the beauty and humanity in people. So yes I do agree, that when we dig deep, there are positive experiences and memories that are worth exploring, savoring, and absorbing. 

I leave you tonight with the notion that maybe we should learn from our elders. Shouldn't we all try to find meaning in the small moments? "THINK SMALL, FIND MEANING" is my motto for the day! 

Sunday, January 19, 2025

Sunday, January 19, 2025

Tonight's picture was taken in January of 2006. Mattie was three and half years old. I was the parent helper that day, so that meant that I got to assist the teachers and also get to know all the children. I am so happy that Mattie went to a coop-preschool, and I got to experience these moments right alongside him. As parent helper, that also meant that I was responsible for bringing in snacks for all the children. I got to learn quickly what the children gravitated to, so I always baked something and had some kind of fruit! Mattie's teacher snapped this photo of the two of us, and I am so glad she did because I look upon that time fondly. In fact, many of my friends who are still a part of my life today, I met at this special school. 

Quote of the day: The meaning of things lies not in the things themselves, but in our attitude towards them. ~ Antoine de Saint-Exupery

So far 2025 has been the year of snow! It snowed again today. My neighbor who typically helps me dig out is traveling. He alerted me to this, so I knew I had to be resourceful today to manage the snow. The only way to manage snow is to constantly go outside and dig out before it piles up and becomes unmanageable. Thankfully today's snow was wet and slushy, making it much easier than the heavy snow of two weeks ago. Typically I am not a cold weather person, but I viewed going outside today as a blessing. I needed fresh air and to see the peacefulness of the falling snow. As odd as that sounds, one has to look for the small and simple moments in life. 

Mattie loved the snow. Not so much sledding, but the possibility to create and build snow structures was right up his alley. I know if Mattie were alive today, he would be outside and right alongside me. It is hard to believe that Mattie would be 22 years old. Of which only 7 of those years, was he actually alive. I knew 7 years old Mattie, but I have no idea what 22 year old Mattie would be like. Which is upsetting as his mom but I also feel his death is a loss to our world. What I do know, regardless of age, was Mattie and I would have always been close and there would be no way he would have me outside shoveling snow alone. 

Between shoveling and doing Foundation work, I also cooked a whole chicken and I am in the process of making chicken broth from the carcass. 

My daily existence is challenging, but snow days are even worse, because I am trapped at home. Some people love that feeling, but I am not one of them.