Saturday, February 8, 2025

Saturday, February 8, 2025

Tonight's picture was taken in February of 2009. Mattie was in the child life playroom at the hospital and was having a story time session with Sally the Story Lady! Sally was a class act. Mattie loved her. Sally always told a story in costume and had props, and encouraged the kids to participate. Mattie never passed up a chance to see Sally, even if that meant Sally needed to come into his hospital room. Look at these two looking at each other! Total joy and enthusiasm! I will never forget these moments and I will always be grateful to anyone who reminded Mattie that he was a CHILD FIRST, NOT A CHILD WITH CANCER.

Quote of the day: How would your life be different if…You stopped allowing other people to dilute or poison your day with their words or opinions? Let today be the day…You stand strong in the truth of your beauty and journey through your day without attachment to the validation of others. ~ Steve Maraboli

As I mentioned previously, weekends are not always my best times of the week. Today, my dad's physical therapist visited and he had a session. My dad works with three different therapists. This particular woman I know quite well, because she worked with my mom at the hospital in 2022, for 8 months. When you see someone for 8 months weekly, you get to know them well. In this particular case, this therapist reminds me a lot of myself when I was in my 20s. Any case, whenever she visits my home, she has what I call "good energy." My mom loves her and literally we have a good time chatting, alongside my dad who is doing therapy. It is amazing how one person can transform the tone, the environment and outlook of the day.

After the therapist left, I continued to do some work, chores, and finally it got to a particular hour and my dad wanted to EAT! I take my parents out every Saturday and Sunday because otherwise, we are home all day and this isn't good for any of us. It helps to break up the routine, see people, and engage in the world. Every Saturday, we go to our local diner. When I tell you I know everyone there, I am not kidding. From servers to managers! What my mom and I love about this diner, besides the people, is the music. It is just a lively place and makes you forget your troubles for a few hours. Truthfully it is therapeutic and Jason, our server, is a kind soul.

While at the diner, the song, You Don't Own Me, came on! Literally this is a song from the 60s, but it has been used in movies too. Background.....You Don't Own Me is a pop song written by Philadelphia songwriters John Madara and David White and recorded by Lesley Gore in 1963, when she was 17 years old. The song was prominent at the time of its release in 1963 as it symbolized women's empowerment, showing the strength of a woman capable of standing up for herself. 

Frankly, I do not need a song to remind me I am strong, or that I can stand up for myself, or that I am my own independent self. What I love about this song is I picture the scene in this video clip below. I can't hear this song without thinking of these three women, dancing in their white suits, their bond and friendship, and to me hearing the song is freeing, it is empowering, and is a reminder.... I'm free, and I love to be free! I suppose free could mean different things to different people. But free to me means free to think, feel, and express myself! These are gifts that should be granted to every human being! 

Literally while hearing this song in the diner, I was ready to get up and start dancing. Music has a way of doing that to me, it evokes emotion and movement. What this reminded me today is that no matter how bleak things look, there is always music, and the notes and lyrics are gifts that can transport us figuratively right into the scene of this movie! 

Friday, February 7, 2025

Friday, February 7, 2025

Tonight's picture was taken in February of 2009. This was a typical physical therapy session in the hospital hallway with Mattie. He would definitely participate, but only after we did the exercises first. Especially if it were a new activity! So Anna (Mattie's physical therapist) and me were on the floor playing twister and Mattie was calling out the moves! My goal was to get Mattie engaged, socializing, and willing to try the necessary movements to rehabilitate. Therefore, if that meant getting on the floor, you bet I was going to do it!

Quote of the day: When your day is a museum of disappointments, hanging from events that were outside of your control, when you feel like your guardian angel put in his two weeks notice two months ago and just decided not to tell you. ~ Rudy Francisco

Today was another winner of a day! In a long line of NOT good days actually. By 5pm today, I truly had just about had it, and what I wanted to do was go upstairs, get into bed, watch TV, and not move for the rest of the day! There are times in my life now, when I feel that NO ONE understands me. NO ONE gets exactly what I am facing each day, and instead, I have people all around me, who just seem to add to the problem. 

Naturally in my house, there is NO going upstairs, NO resting, and certainly if I am not cooking and preparing food, there will be NO dinner. So that isn't a realistic wish to go to my room. What I find, as has been true all my life, that when I am overwhelmed, I revert to a whole bunch of self talk! Literally I talk to myself, both in my head and externally. Depending upon how bad the problem is, you will actually hear me talking! 

As odd as that may sound, talking to myself is therapeutic. I came across this NY Times article entitled, The Benefits of Talking to Yourself. You may want to glance at it, if you are a self talker like me! Research indicates that self talk influences our behavior and cognition, and there are two common types of self talk.... talk that is instructional and talk that is motivational. 

I can't say that I do much motivational self talk but I sure do a lot of instructional talk. For example, this week alone, while working on putting together the Foundation's Walk website, I landed up talking to myself, especially when I was working behind the scenes with our tech folks who were trying to instruct me on how to do something. I literally repeated the steps being conveyed to me, while I followed each one and revamped the website. But a type of self talk that isn't mentioned in this article is the self talk that is used for venting. If I did not talk to myself and verbalize a way out of an emotional problem or crisis, I most likely would be physically ill. That is how much stress I live with and navigate through each day.  

When Mattie was diagnosed with cancer and throughout his cancer journey, I would say that I was surrounded by his incredible healthcare team and our Team Mattie community. I most definitely was living with 24/7 life and death stress, but I never felt alone. Of course it was hard to feel alone, when we were living in a pediatric intensive care unit. However, once Mattie died, the isolation began! That was when my existence and my circumstance became frightening to those who knew me. I will ALWAYS remember friends seeing me shopping in a grocery store and literally they would turn around and run the other way! They did not know how to deal with me, so it was better to ignore me. I also had two friends who I knew for longer than 15 years, who also abandoned me. When I asked why they no longer talked to me, they literally said, "because your loss is making ME sick!" Truthfully you can't make this up, and I can't tell you how this compounded the loss I was already feeling. 

So when you lose your support network, what do you do? When you live a life that most people can't relate to, then what? I really do not have an answer to these questions and the answer maybe different for each of us. But while I try to brainstorm my way through these existential crises.... I talk to myself! Sometimes in talking to myself, I ask for God and Mattie's intervention. I ask for guidance and support, because at times things are just so overwhelming that I really do not think earthly support truly cuts it. The serenity prayer is never far from my mind, because it is simple and yet deeply meaningful....... 

God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

Thursday, February 6, 2025

Thursday, February 6, 2025

Tonight's picture was taken in February of 2009. Mattie was having a physical therapy session with Anna in the middle of the pediatric unit hallway. Seriously during that year, I truly believe Mattie got Anna to think WAY OUTSIDE THE BOX, in order to get him to participate in physical therapy. Anna understood that Mattie loved games, competitions, and challenges. But on his terms. This photo shows Anna demonstrating what she wanted Mattie to do! You can see she took her shoe off to show him! Mattie had a beautiful bond with Anna and Anna was an amazing support to me, especially after his extensive limb salvaging surgeries. There were days Mattie did not want to move or we couldn't find a comfortable position for Mattie, when Anna arrived in Mattie's room, things always improved. It is amazing how one competent, kind, compassionate, and insightful person can change your whole day around!

Quote of the day: Where words leave off, music begins. ~ Heinrich Heine

After a long day, I got my parents situated at home, so that I could drive to my therapy appointment. I hadn't been able to go for these sessions in over two weeks. Something always came up and I had to manage either an urgent care visit for my dad or taking my mom to an emergency doctor appointment about her foot. Frankly I have been debating..... why go to therapy at all? So much about my life is out of my control, so what good is talking about it accomplishing? I range about my feelings on this and my answer changes week to week depending upon my mood. 

As I was driving to therapy, I was listening to the radio. Something I no longer get to do given that I am shuttling my parents from one place to another when I am in the car. In any case, a song came on called, Tough People! Naturally the title caught my attention and then I listened to the lyrics. Do you think that hearing a song can change your mood? Can make you feel better about your life and situation? Well I do! Music, for me, is very therapeutic. In so many ways music evokes, expresses, and captures emotions that sometimes WORDS can't do! The song, Tough People has many verses, but the chorus of the song is........................

Oh, there's a whole lotta bad in the world out there
Oh, and it's hard to keep goin' when it don't seem fair
Keep on fighting when you're back's against the wall
Keep on getting back up when you fall
Keep on keeping your head held high
'Cause I still believe
Hard work pays off
Good beats evil

And tough times make tough people

Do I think tough times make tough people? 100%! I am living proof. I have experienced a whole range of issues in my life, not just one, many. Each grief and trauma builds on past losses and traumas. Yet I am still alive, I still care diligently for my parents, manage my entire household, and a run a non-profit. It does take a tough person to have survived many of the things I have endured. Of course being tough sometimes doesn't cut it! I could be as tough as I want, yet being tough couldn't prevent Mattie from getting cancer or dying. It couldn't prevent Sunny from getting cancer and dying, and it couldn't prevent my dad from getting Alzheimer's. But that's the thing, tough isn't about being able to prevent the impossible, it is about finding the courage, persistence, stamina, and HOPE to find a way to live with all the disappointments, all the horrors, and all the losses. So if someone wants to call me a "tough person," I view it as a badge of honor. 

The problem with becoming a tough person though is that it is possible in the process to shut out the world and others in it. It is safer that way! It is also a natural reaction to trauma, to feel others can't possibly understand or relate to our thoughts and feelings. It can leave you hardened. So how do I break that hardness? How to do I prevent from shutting down? Again, it depends on the day! Today it was hearing Drew Baldridge's Tough People! 

Wednesday, February 5, 2025

Wednesday, February 5, 2025

Tonight's picture was taken in February of 2009. Mattie was 6 years old and I snapped a photo of him right outside his hospital room. It was not unusual for us to decorate Mattie's door and it was a GIVEN that there would be decorations inside Mattie's hospital room (on the walls and the ceiling). Literally we traveled with bins that we would cart into the hospital with each admission. The bins were filled with Mattie art work, plates, utensils, laundry detergent, Mattie's favorite toys and books, and whatever else we needed for our long stays! Truly it looked like we were moving into and out of a home with each admission and discharge! We also traveled with many pajama sets too because Mattie's clothing of choice while in the hospital were pajamas. I did not fight his choice, because truly he had very little control over anything else. 

Quote of the day: You'll never find a rainbow if you're looking down. ~ Charlie Chaplin

As I sit tonight to compose this blog, I realize I am tired! I also acknowledge that I have had another long day of chores, running around, Foundation work, cooking, cleaning, and caregiving. It leaves me feeling down, not because of any one thing, but because of everything put together. Typically by the time I get to the computer in the evening, I have some notion of what I plan on writing about or reflecting upon. Tonight, I have NEITHER. 

Perhaps tomorrow will be better? I am not sure, as my days feel a lot like the 1993 movie, Groundhog's Day. The only difference, is I don't wake up to an alarm clock each day singing me Sonny and Cher's song, I got you babe! There are certain guarantees to my day, and they entail, chores, isolation, caregiving, managing crises, and at times when I am not absolutely inundated then fear creeps in about the future.

Any case, the one ray of sunshine in my day is I think I have diagnosed my mom's toe/foot problem! For about three days now, I have soaked her foot at night for 40 minutes in Epsom salts and then I wrap her toe. She feels like it is improving and frankly I am not going to stop this soaking and wrapping routine until I can effectively touch her toe without her screaming. I have consulted three doctors on this issue, and at the end of the day, I had to solve the problem for myself! Typical!!! 

All I can say is down days are abundant for all of us. But as tonight's quote points out, we must always hold out hope to see a figurative rainbow. 

Tuesday, February 4, 2025

Tuesday, February 4, 2025 -- Mattie died 780 weeks ago today.

Tonight's picture was taken in February of 2009. Mattie was in the outpatient clinic at the hospital and pictured with him were Jenny and Jessie, Mattie's art therapists. I have no idea what I would have done without these incredible women. True blessings! That day, they were working on designing a welcome sign to the inpatient pediatric units of the hospital. They wanted to add a child's handprint to the sign! Mattie wasn't interested, until they suggested.... a footprint! That notion, Mattie liked a lot! You can see Mattie's foot was being painted red and the final product is below. 

This sign is still on display at the hospital! Mattie died, but his footprint greets every family entering the pediatric units. These families may not know the story of this red footprint, but I will NEVER forget it. It is a legacy piece!

Quote of the day: The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well. ~ Ralph Waldo Emerson

Given what I balance each day, it is quite possible that you may think that Mattie Miracle isn't a priority. I can assure you that isn't the case! My world could be imploding, but there is NO WAY, I would ever forget my second baby, the Foundation. I always do some sort of Foundation work each day. Some days it is more labor intensive and other days it could look like answering correspondence from families in need of assistance. 

Today seemed like the kind of day that highlighted Emerson's quote! I wholeheartedly believe that being happy is overrated. In fact, I am not quite sure what that trite word means. But to live a useful life, a life that helps others, and makes a difference is what gives our lives purpose. Out of the blue, I received several emails today about Mattie Miracle. Emails from researchers and families. 

One researcher based in Boston told me that Mattie Miracle's research grant enabled her team to create a blueprint to help siblings of children with cancer. This blueprint is now in the process of being implemented at two hospitals! To hear that this blueprint wouldn't exist without Mattie Miracle is very humbling! The blueprint has the capacity to help siblings, who in many cases are the unforgotten ones in the cancer treatment journey as research indicates siblings of children with cancer have long term psychosocial issues.

Another email was from a dad whose child is a recipient of one of our M&M Wishes. His family has endured the impossible, as his daughter is facing an aggressive brain cancer diagnosis. His daughter wanted to go on a family trip to Great Wolf Lodge in the Poconos. When I told him we were granting this wish, his excitement could be felt through my computer. He views us as a blessing and the miracle his family needed. 

I know all too well how a gift of kindness can transform one's day! In fact, when Mattie was in cancer treatment, I kept a stash of gifts that his support community gave us. During difficult moments, and there were many each and every day, I would surprise Mattie with a gift. These gifts provided diversions from pain, from fear, and from thinking about cancer. I will never forget Team Mattie's kindness and generosity, and in a way Mattie Miracle's M&M Wishes program is a larger scale version of what our care team provided to us (NOTE: the M&M Wishes program started in 2022, and was created in memory of our board member Margy. The M&M stands for Margy and Mattie. In two years, Mattie Miracle has awarded $40,000 worth of wishes to 35 children with cancer). As I always say, Mattie was my life's greatest teacher. I learned so much from him, and his journey guides our mission, our activities, and our programs.  

So if I ever question.... what is my purpose? I need to pull out the many emails I have received over the years from the childhood cancer community! Their words and feedback matter to me. But that said, when I am in doubt, I always go back to Mattie. He is like my North Star, always guiding the way. He may not physically be alive, but his spirit and legacy are alive and well in his Foundation.  

Monday, February 3, 2025

Monday, February 3, 2025

Tonight's picture was taken in February of 2008. Mattie was five years old and believe it or not, Mattie was diagnosed with cancer five months after this photo was taken. WOW.... was I naive about life back then! It was a time period where childhood cancer wasn't anywhere on my radar scope and I lived under the delusion that we have control over our destiny. As you can see, Mattie designed an airplane out of tinker toys! I remember teaching several undergraduate courses in child development. I had the experience of teaching these courses before I was a mom, and then while being a mom! I can assure you, Mattie taught me MUCH MORE than the textbooks and I tried to bring concepts alive for students by sharing many Mattie moments! I saw the debate of nature vs nurture unfold with Mattie, as he was hardwired to love all forms of locomotion! Even as a baby, he was fascinated by planes, cars, helicopters, trains, and buses! I did not teach that, it was natural instinct! 

Quote of the day: We can bring positive energy into our daily lives by smiling more, talking to strangers in line, replacing handshakes with hugs, and calling our friends just to tell them we love them. ~ Brandon Jenner

For some reason I couldn't stay asleep last night. I think when all was said and done, I slept for two hours. Needless to say, it took all the energy I had to get out of bed this morning and then proceed to have a very full day. 

I woke up to this image today! My friend in England sent it to me. She and I are struggling with similar issues and for over a year, we have helped each other DAILY navigate the ups and downs of our existence. Given that Valentine's Day falls in February, she sent me this bingo board, so we could play along with each other. We check off boxes as we complete them, and we then tell each other about how we met the task in the box. 

This activity may sound silly, but honestly structure is vital to our existence. In addition, we remind each other DAILY to, THINK SMALL and TAKE ONE STEP AT A TIME. We have daily mantras to each other, that are used so often, that we now have acronyms for them. Any case, I would say there are some of these boxes that I naturally do daily, such as "opening doors for people," "cook a nutritious meal," and "compliment a stranger." The other items on the list are more self directed! I have a MUCH HARDER time directing kindness, care, and compassion to myself. This isn't a novel realization, this is just me. Asking me to do something for myself, actually almost makes me uncomfortable. Because my natural internal question is.... doesn't someone else need something first? 

January and now into February have been months of getting things done. Things that are not necessarily in my strike zone. But as the February Bingo card says..... do one thing you've put off. I have done all sorts of things I have put off like purchasing health and dental insurance, purchased a Geek Squad membership, and now closed my marital bank account. I did not face any of these things with glee, joy, or happiness. Nonetheless, I have to be the adult on duty in my house at all times, and taking care of these important tasks is actually vital for my existence. So perhaps that is my valentine's gift to myself.... doing something that is a round about form of self care. I can manage such self care tasks, but don't get me started with other boxes on this Bingo card like.... have a spa day at home (not happening and NOT interested), write a letter to your younger self (SERIOUSLY???? That wouldn't be pretty!), and have a solo date night (again, really??? and no thank you!).

What I have noticed since caregiving for my parents, is that people around me take notice. I don't have to say a word, they just observe and understand we are a trio. I can't tell you how caregiving has opened the door for me to many conversations with other people. When I meet other people who are caregivers or who have had a caregiving experience... it is like a silent club, where we have a secret handshake! Within minutes of talking to each other, we just know.... YOU TOO ARE A CAREGIVER! This kind of camaraderie also existed when I was caring for Mattie. When I met a fellow parent caring for a child with cancer, I remember that instant connection. We may not have known each other, but we were united by the inner world and language of childhood cancer. Which leads me back to the February Bingo Card. On the card, is a square that says... learn your love language. When I first read that, my eyes were rolling, but stepping back, what is my love language? What symbolizes the ultimate in love is caregiving. Caring for someone else, enabling that person to have a better quality of life because you are present, caring, patient, and loving is what makes me tick. It is my love language and it is what makes life worth living.  

Sunday, February 2, 2025

Sunday, February 2, 2025

Tonight's picture was taken in February of 2003. Mattie was ten months old and I tried my best to give Mattie time sitting up and playing. There were two positions Mattie did not really care about... one was lying on his back and two was sitting up. When awake, Mattie preferred to be standing and moving his feet. Though he was unable to walk at that point, he loved standing in his entertainment saucer and his tot wheels walker. Nonetheless, I understood the importance of developing certain muscles and therefore I tried my best to make things engaging, so that Mattie would want to sit and play! Clearly you can see I had moments of success. 

Quote of the day: There are days when I feel so lightly connected to the earth that the threads that tether me to the planet are gossamer thin, spun sugar. A strong gust of wind could dislodge me completely, and I’d lift off and blow away, like one of those seeds in a dandelion clock. The threads tighten slightly from Monday to Friday. ~ Gail Honeyman

For the last two weeks, I have been balancing my mom's foot and toe issues. In fact, last week I took her to the podiatrist. The doctor did some nail maintenance and then gave us gel toe spacers, to prevent her toes from rubbing against the other. I truly was hoping that would help! It did somewhat for a day or two, but now she is back to complaining of excruciating pain. So much so that she doesn't want to walk and when she walks, she is moving in a very strange fashion. I feel at a loss. I consulted her rehab medicine doctor, that did not help. I consulted a podiatrist, that did not help either. So tonight I wrote to her neurologist. 

It is hard enough juggling my parents alone when my mom is able to walk, but now that she is having further difficulties, it is truly beyond challenging. Because going out with my parents means I am giving my dad direction and watching for all possible issues where his walker could get stuck or he could trip, and while doing this, I am carrying my dad's tote bag, his seat pillow, and I have my mom holding my other hand. It is a lot and when my mom is in pain, she has a way of making me very edgy. 

This afternoon, I took my parents out for lunch. We typically go to the same place every Sunday, but our server, Cheryl, was meeting with her family today and wasn't going to be working. So instead, I took my parents to a more local restaurant that they like. Since we have been to this restaurant maybe six times, the servers are getting to know us. In fact, one server, has the same name as my niece, Sydney. Sydney knows me and I know her, as she came over to greet us today! Other servers there call me the jam and cookie lady! Because I travel with a jar of Smucker's jam for my dad and cookies! As I always say, it is amazing what people observe and absorb! 

While dining, I could tell my mom wasn't comfortable. So after we got back in the car, I drove to CVS, bought Epson salts and I am hoping that soaking her foot will help! The problem with her foot issue, is that there is NO visible issue that I can see, and because she can't describe the pain to me, I feel at a loss on how to manage it! 

While I manage so many issues on any given day, I can't tell you how I would love to be able to pick up the phone and text or call Mattie. The loss of Mattie wasn't just something I contended with on year one, two, or three. NO! It is a FOREVER loss, a loss that I feel at EVERY developmental stage of my life. I thought the initial loss was bad, but I am noticing as I age, his absence has become even more heightened.