Friday, October 10, 2025

Friday, October 10, 2025

Tonight's picture was taken in October of 2007. Mattie was five years old! Truthfully it was such a special age! Mattie loved his kindergarten, he had conquered his sensory integration issues and he was developing into an amazing little person. Mattie's teachers always described him as an 'old soul' and a very loyal friend. Quite a set of compliments at such a tender age. This was one of the many fall festival photos that I love! Mattie was in his element outside and I learned to appreciate these experiences. In all reality even the mundane was an adventure with Mattie!

Quote of the day: We do not remember days, we remember moments. ~ Cesare Pavese

For the past week, whenever I turn on the radio in the morning, I hear advertisements for the ballet, Onegin, playing at the Kennedy Center. Before I moved to this house, we lived in Foggy Bottom, and the Kennedy Center was our next door neighbor! Truthfully it was the best location, as I LOVED going to the theatre. This is one of the many things I had to say good-bye to when I moved to the suburbs. As attending the ballet and musicals was something that to me made life worth living. 

When we first moved to DC in 1994 (from Boston), I wanted to get a ballet subscription. We had one in Boston, and I wanted to continue to support this amazing art form. Anyone who is familiar with getting a subscription knows its a game. The first several years, you can not get the seats you want, which for me were front and center. You have to get into the system and work your way to these seats. When we left Boston, I was saddened because I had to say good-bye to our amazing seats (that took years to get) and the Boston Ballet. Up until that point, I have always lived in a city that had its own ballet company. Washington, DC is a bit different. Instead they bring in companies from all over the USA and internationally. 

I will never forget the Boston Ballet performed Eugene Onegin. It was part of our ballet subscription that year. Honestly I had never heard of it, to me it sounded obscure. That was until I saw it! It is a ballet that in my opinion is rarely performed. Which is unfortunate. I have only seen it once in my lifetime, but it made such an impression on me, that I said to myself..... if it ever comes my way again, we have to see it.... and here it is at the Kennedy Center. Given my caregiving circumstances, I am not going to see it, and then of course all I can remember is who I shared my ballet subscriptions with and.... that saddens me to the core. 

Onegin is the timeless story of FIRST LOVE and LOST LOVE! A story that actually is even more poignant for me now. Onegin is based on Alexander Pushkin's novel Eugene Onegin. The story follows the unrequited love of Tatiana for the cynical aristocrat Onegin, who rejects her, flirts with her sister Olga, and kills Olga's fiancé, Lensky, in a duel. Years later, a now-sophisticated Tatiana rejects the lovesick Onegin, making for a tragic tale of love at the wrong time.

I mention Onegin, because if it comes to your neck of the woods.... go see it! It is unforgettable and I deeply admire the dedication, incredible discipline, and the countless hours of practice dancers put into this art form. I guess I have a soft spot for ballet because my mom enrolled me in both ballet and tap when I was probably five years old. By the time I was in middle school, I was practicing ballet three or four times of week in NY City. I trained at the American Ballet Theatre and in 9th grade even won (through a competition) a four year college scholarship to study modern dance at SUNY Purchase. Dancing was a big part of my life and one I loved sharing with my other half. 

However, even something as lovely as dance, has been clouded over in my mind and heart. Now when I hear an innocent commercial on the radio for the ballet, what happens is I see my life flash before my eyes and I just can't believe the tragic tale is NOT something I am watching BUT instead living.  

Thursday, October 9, 2025

Thursday, October 9, 2025

Tonight's picture was taken in October of 2008. I will never forget this trip to Baltimore, MD. We took Mattie to the Inner Harbor to attend a train museum and then go out to lunch. It was the weekend before his first limb salvaging surgery. We were all very stressed out and nervous. Of course no trip was ever complete without Legos and constructing. What he was holding was what Mattie put together while having lunch. Even looking at this photo now, I can feel the tension that was on our faces and truly once the surgeries came into Mattie's life, things were never the same. Chemotherapy was hard, but surgeries were brutal. As they impacted Mattie's ability to ambulate, dress himself, toilet himself, and be a child. With cancer, each step of the way, we faced losses. Some times there were daily losses, and other times, the hits came every hour or minute. 

Quote of the day: ...what happens when you return, and find nothing but a hollowed shell, shingles and floor, walls and echoes and the light that lead you here has now burned out and the ones who built it have traveled afar and you cant go to them, no matter what shoes you wear. ~ Kellie Elmore

This morning was my usual trifecta.... Indie NOT using her litter box, soiled linens to clean, and my dad having a bout of irritable bowel syndrome in the shower. Truly after these three things, I have a feeling most people would be taking to bed. For me these are regular occurrences, in which I have to deal with it and move forward. But I am human and there are times I ask myself.... why don't I have a better life? Or at least a life when those closest to me actually appreciated and respected me. 

I looked out the window this morning and saw this! Do you see it?? Sitting under the tree! NO it is not a dog, NO it is not a cat.... try a fox. Like our deer, I also love foxes. But I am cognizant that foxes typically do not hang around like this during the day. I got my binoculars out to examine his coat and he did not look sickly. So I gave it time and figured maybe he was sunning himself! I have had to call animal control in the past when we had a fox with mange. I assure you it is daunting to see animal control show up at your door with a rifle. Thankfully this fellow moved along today and I literally breathed a sigh of relief. If Sunny were around, there would be NO FOXES on the lawn at all. Sunny was the master of the house and roamed and patrolled the property beautifully! I can't tell you how many deer and fox Sunny chased while living here! Sunny has been gone over a year, and I still miss his presence daily!

This afternoon, after my dad's visit to the podiatrist, I took my parents out for lunch. We visit this restaurant every Thursday. I know about six to seven servers there and several come to chat with me each week. One of the servers today was talking to me about the holidays. He wanted to know if we were going away or how we are celebrating them. This fellow doesn't know that my life is a train wreck, so instead of answering the question, I turned it back on him. Something I will typically do if I do not want to answer a question. He told me that he spends Thanksgiving and Christmas alone. He works the day before and the day after every holiday, making it impossible for him to travel and celebrate with family. Honestly hearing this made me so so sad. I never like hearing about anyone being alone, and especially on the holidays. There are times I ask myself.... what will my life look like if my parents are no longer alive? This is not something I like thinking about, because when they die, I feel like I have nothing left. But today, I thought to myself, perhaps holidays will be a time where I pull everyone who is alone together, as NO ONE should ever be alone.

Wednesday, October 8, 2025

Wednesday, October 8, 2025

Tonight's picture was taken in October of 2008. Mattie was three months into his treatment and was in the  hospital hallway with his buddy, Brandon (who was diagnosed around the same time as Mattie), and child life interns (Whitney and Lesley). I know without a doubt that it was a Friday! How do I know? Because the Chemistry Club was there doing a hands-on experiment that generated ice cream! I will never forget Chris, the president of the club (who thanks to my friend Susan, I have been reconnected with Chris --- WHO DID BECOME A DOCTOR!!!). Mattie loved Chris and as Mattie's treatment wore on, he typically did not want to engage with volunteers! However, that feeling did not apply to Chris. If Chris and the Club were in the pediatric units, Mattie wanted to participate. Some days that meant that the Club had to come into Mattie's room, because he was too sick to interact with others in the hallways.

Quote of the day: He smiled his shy smile at her as he went into the yard. Anne took the memory of it with her when she went to her room that night and sat for a long while at her open window, thinking of the past and dreaming of the future. Outside the Snow Queen was mistily white in the moonshine; the frogs were singing in the marsh beyond Orchard Slope. Anne always remembered the silvery, peaceful beauty and fragrant calm of that night. It was the last night before sorrow touched her life; and no life is ever quite the same again when once that cold, sanctifying touch has been laid upon it. ~ L.M. Montgomery

Today was another winner of a day, balancing the usual and also dealing with all sorts of emotions and inner conflicts. What am I talking about? I am talking about the fact that my former mother in law had surgery today. Since she lives in a completely different state, there isn't much I can do to help and support her. Since my separation and divorce, I continued to think of her as my mother in law. But I have learned that when you divorce, I legally can't refer to her as my mother in law anymore. Did you know that? Google it! It will tell you that.... "No, after a divorce, your "in-laws" are no longer legally or formally your in-laws; they are your former in-laws. The "in-law" status is tied to the marriage itself, so the relationship designation ends when the marriage ends." 

Again, the law says one thing and the brain and heart may feel something completely different, especially since I have known these two people since I was 19 years old. I grew up with them, spent holidays with them, traveled with them, they are Mattie's grandparents, and the list goes on. So for almost 30 years they were my in-laws, and now THEY ARE NOT. Poof.... overnight I became single and not officially a part of a family. It is quite the rude awakening and very disorienting. I suppose just like everything else, I will find a way to navigate through this as well. 

So she may not be my mother-in-law anymore, as defined by law, but that doesn't mean I don't care about her, care about her well-being, and value our history together. Any case this whole notion today brought about yet another layer of sadness to my life. My identity for decades has been stripped away.... first my child died.... leaving me to question....am I a mom?..... Then I got divorced..... so was I ever a wife? Now I come to find out that I am not even someone's daughter-in-law! WOW..... so just who am I? Everything I once was, for almost all my adult life, has crumbled, and I am left to pick up the pieces. Honestly some days I think there just isn't enough glue or tape to fix this mess.  

Tuesday, October 7, 2025

Tuesday, October 7, 2025 -- Mattie died 815 weeks ago today.

Tonight's picture was taken in October of 2006. Mattie was four and half years old and like most Fall weekends, we went to a local festival. We saw this gigantic pumpkin and posed for a photo with it! I always loved this photo and it remains framed in my office today! Life looked so different for us back then and I would never have guessed that two years later Mattie would have been diagnosed with cancer!

Quote of the day: It is strange how close the past is, even when you imagine it to be so far away. Strange how it can just jump out of a sentence and hit you. Strange how every object or word can house a ghost. ~ Matt Haig

It was another day in paradise. Today, it was like I had a bee in my bonnet! I was determined to get this furnace working! I started my calls early with the company who installed the furnace yesterday. Besides the huge expense, out of principle, if you install something in my home, it should WORK! I called this company several times today because they wanted to send out the same install team I had yesterday! No offense, they were lovely, but this issue was NOT an install issue. It was an electrical/technology based problem! How did I know? I knew because I had this same problem in 2024! In fact, 2024 was such a bad year, that we went the entire winter on the second floor without HEAT! Trust me, it was painful. We suffered through this because no one seemed to be able to solve the problem. Until I got introduced to Jonathan. Jonathan figured out the problem and therefore I wanted Jonathan to come back today! I fought hard to get an experienced person here. 

At 1pm, my doorbell rang. It was not Jonathan. Instead, I was introduced to Andrew. At first I was upset, but it turns out Andrew is like ten stages higher than Jonathan. Andrew worked for two hours trying to diagnosis the electrical issue. He is ordering three new parts, which he will install next week FREE of charge! Here's the funny part! Yesterday the install team, installed a new thermostat! Turns out this new thermostat won't work, and is helping to contribute to the electrical issue! Instead, I need the model of the thermostat they dismantled yesterday! Mind you I threw it out, and the garbage was collected today! After all, I figured I did not need it. Thankfully the company is giving me a brand new one and not charging me. Seriously this furnace issue may send me right over the edge as upstairs has reached temperatures of 82 degrees this week! How I managed to sleep in that heat is beyond me. 

The furnace was one issue I addressed today. I also had an in-home nurse over to evaluate my mom, as she is starting physical therapy this week. The nurse was over at the same time I was juggling Andrew of course. But adding to my long list of what I am learning to do, I also spoke to a financial advisor today. My focus is on the Foundation, keeping it financially viable, growing, and ultimately keeping Mattie's legacy going for as long as I am alive. Talking finances and investments is NOT second nature to me, but it has been two long years of moving way past my comfort zone. 

Before Andrew left today, he said to me.... "your house is easy on the eyes both inside and outside!" I truly had to think about this for a minute! As easy on the eyes is an older expression! But I knew exactly what he meant.... he was telling me that he thought how I have decorated the house and how I care for the outside is beautiful. Needless to say, his comment meant a great deal to me, because I work around the clock to keep this house looking the way it does.

Given that it was October and close to 80 degrees today, I made sure I got outside in the backyard! I trimmed more of my roses, and that hour outside felt magical. 

Tomorrow, I am headed back to the bank. I have more meetings there, but I am not going empty handed. I am so so grateful to the banker helping me that I baked her lemon drop cookies tonight and put together a bouquet of hydrangeas from my garden for her. Sure she is doing her job, but it is how she is doing it! With great compassion, concern for my financial well-being, and spends the time educating me so that I can make better decisions. 

The banker won't know the "Mattie" significance of sunflowers, but I certainly do!!! I am glad to have her as a resource! Yes I am learning the art of being self reliant, but I also know the importance of having trusted community resources to turn to for guidance, insights, and help. 

Monday, October 6, 2025

Monday, October 6, 2025

Tonight's picture was taken in October of 2007. This was what our Fall weekends used to look like! Mattie absolutely loved these festivals, being outside, and having an adventure. I remember years prior to this when we took Mattie to these events, he was too scared to go down these slides alone. However, by age 5, he felt he was ready! I truly can't believe how different my life is now from when I snapped this photo. Back then, I thought so many things were givens such as being able to watch Mattie grow and mature and growing old with the one I loved. 

Quote of the day: When it comes to memories, the good and the bad never balance. ~ Jodi Picoult

Truthfully I can't make up the insanity of my day! I got up at 5:45am in order to get myself ready, chores done, my dad up, showered, and dressed, in time for the HVAC people to come and install a furnace. Of course as soon as I got up, Indie wanted to be fed. To be greeted with her mess all over the basement rug was a sign to me that the day wasn't going to go well. I truly can't understand her behavior and frankly I am juggling so much alone, that I do not have the time to methodologically understand why she is acting out!

The HVAC people were supposed to arrive at 8am. Instead, they came at 9am, just when I got my dad in the car to take him to his memory care center. I was pressed for time because I had an appointment at my doctor's office at 10am. Yet I knew my mom couldn't manage these workmen by herself. She knows where nothing is in the house! So literally I jumped out of the car, went through all the issues and problems with the fellows, showed them where my breaker boxes were and how to access the attic. I also reminded them that I have a cat. That is all I would need..... to have the door open, Indie run out, and no one having a clue she left the house! 

I got my dad off to his memory care center, and then drove 40 minutes to my appointment. I hit terrible traffic and when I got to the hospital, only one elevator was working! Since I was running late, I decided (like so many other able bodied people) to walk up the stairs. That was 8 flights of stairs! By the time I got to my doctor's office, I was 15 minutes late. I thought for sure, they were going to tell me SORRY! But they accommodated me. From there, I drove to the Foundation's PO box, and discussed my stamp needs with the folks who have helped me with our mass mailer for 15 years! Unfortunately the 2 ounce stamps that I need weren't in stock, and they are ordering them for me. Which means at some point, I have another 40 minute trip back and forth to pick up stamps and postal bins for my December mass mailing. 

I then drove back home and managed the installation of the furnace. No matter how much I tried to mitigate the process, as of tonight, I am getting NO HOT OR COLD AIR! I am absolutely disgusted and sent my sales person a text message saying HOW UPSET I am! I warned them that the last time they played around with my furnace, it upset the wiring of the system! Sure enough I am faced with the same issue, and tomorrow I will be demanding that Jonathan return to help me. As he was the only one in the past who figured out the technological challenges! But honestly the installation process, all said and done, was close to six hours. You would truly hope after all of that, things would be working. 

Of course with each hour going by today with the workmen, my mom was getting edgy and wanted to get out of the house. Which makes it stressful for me, to manage her and her expectations. I have told her when the contractor comes this month to repair the damages from the flood she caused, that I will NOT be in control of the schedule. That this is something we just have to endure. 

This is just some of the things that were happening today. Then of course I had calls about the furnace loan, and countless other issues popping up. There is not one moment in my day when I have peace. Other than when I am sleeping, and even that doesn't come naturally to me. This was the beauty of being married, to have a partner by your side sharing the load, supporting on another and knowing you are not alone. Things are always better when shared. Facing life as a single person brings me no joy, it makes everything in life ten times harder, and given all that I am balancing, I am not sure how I have not crashed and burned yet. 

On aside, one of the HVAC people asked me.... where did you purchase your Fall wreath on your front door? Hysterical no? He is the third person who has asked me about my wreath! I told him I made it myself! He then asked me.... do you have a website where you sell your creations? HYSTERICAL! I said no, and his response was.... too bad, because I would have bought one!

I end tonight's posting with Mattie Moon! Shining brightly over the house!

In fact, Mattie Moon is shining so brightly, he is lighting up the inside of my home! A reminder that Mattie is there and all I can say is life would be much better if Mattie were alive. 

Sunday, October 5, 2025

Sunday, October 5, 2025

Tonight's picture was taken in October of 2005. It is hard to believe this was 20 years ago! Back then I was so naive about childhood cancer, it was no where on my radar scope. This scene was quite common in our home! Mattie loved to paint with his feet. Honestly this was something I could never see myself doing for multiple reasons, but since Mattie loved it, I went with it! Fortunately for me, Mattie was instinctively neat. He understood that he had to work within the space lined with paper and not to run around the house with painted feet. Needless to say, there were many wonderful creations that resulted from his painted feet!

Quote of the day: Memories are dangerous things. You turn them over and over, until you know every touch and corner, but still you'll find an edge to cut you. ~ Mark Lawrence

Every Sunday, I take my parents out to brunch. We have worked with the same server for years. Today, Cheryl was ill. So we worked with someone else. I know this sounds crazy, but working with new people is stressful. It is stressful because with my dad, I no longer order what's on the menu. I get the restaurant to make the items he wishes to eat. Cheryl also knows all the little things that make a meal go more smoothly. Such as she brings my dad a bowl of crackers, to munch on, until food comes. It is all the little things that Cheryl does, that makes my job slightly easier when dining! Cheryl was missed, but we managed. 

Meanwhile, while eating, a wasp was flying around our table. This is NOT a good bee! They are aggressive and the last thing I needed was my dad getting stung (I do carry an EpiPen around with me!). I literally jumped up with a napkin, and stood on top of a booth to kill it. I had everyone in the dining room watching and a manager came over to help me. I know all the managers, so when I was standing on a booth, they knew something was wrong. Between me and the manager, we killed the wasp!

Getting my parents from the car into the restaurant is no easy feat. I literally have to lay by with the car, put my hazard lights on, and take my parents into the restaurant and to the table. Then of course I have to come back out and park the car. The restaurant also has two sets of doors, making it like mission impossible, as I have to hold onto my mom, direct my dad, and open two sets of doors. Today, I had many kind people who held doors for me and showed great patience. What a difference even a small act of kindness can make to one's day. 

When I arrived home, I saw all these wonderful gifts to the Foundation sitting on my doorstep! DEEPLY GRATEFUL for having the best of friends!

I have been struggling with my hose bibs. All my hoses are stuck on the spigots! I tried about a week ago to use a wrench to loosen the hose, but only landed up scratching the metal of the hose. I was frustrated and was going to leave this task to Steve (my outdoor guru). But then I decided to watch a YouTube video about how to manage this problem.

This afternoon, I sprayed the hose bib with WD 40. I let that sit for several hours while I was out with my parents. When I came home, I went outside with the wrench the video recommended and my plastic gripper that I use to open jars and bottles. The key is to wrap the plastic gripper around the hose bib, and then put the wrench around the plastic gripper. This prevents the wrench from scratching the metal and also provides a better grip. Want to know what happened?????

Voila..... I was able to remove the hose from the bib! I can add this to my long list of things I learned to do around the house. What I learned from my divorce is self reliance...... to be as self sufficient as possible!