Saturday, June 28, 2025

Saturday, June 28, 2025

Tonight's picture was taken in June of 2009. This was right after Mattie's sternotomy, which removed 7 tumors from his lungs. Two of his HEM/ONC nurses were in the room with us, his day nurse (left, Sarah Marshall) and his night nurse (right, Ellen). Ironically, Ellen was the nurse who administered Mattie's first dosage of chemotherapy (August 2008) and Sarah Marshall was the nurse who was with us the night that Mattie died (September 8, 2009). Which I assure you was one of the worst horror scenes you could imagine. I think that the way Mattie died caused Sarah Marshall to switch from being a HEM/ONC nurse to a pediatric intensive care nurse. I snapped this photo because Mattie's nurses loved him and when you wonder WHO is actually providing the direct minute to minute care in a hospital, think NURSE! 

Quote of the day: He who throws away a friend is as bad as he who throws away his life. ~ Sophocles

This morning, while my dad was with his physical therapist, I sat outside on the porch. I made it sitting still for about 15 minutes. It is wonderful to see all this greenery, to see the hummingbirds coming by, and to hear the fountain going. Steve (who helps me with all things outside of the house) fixed my fountain this spring and he put a pump in the fountain that makes a beautiful cascading sound! When you want to know what my therapy is..... it is being outside and in my garden. 

For the last two weeks, I have been working on painting the off white portion of our side porch. Eventually I need to get this professionally redone, as a lot of the wood has rotted, but for now, I did not want to see the mess, so I painted right over it. It won't solve the problem of course, but it sure looks a whole lot better. I eventually have to get to painting the brown steps, but I did not have it in me today, as it was hot, humid, and buggy! 

My Father's Day lilies finally popped. I nicked them Father's Day lilies, because they usually open up near Father's Day. When we moved to Washington, DC in 1994, we bought a bunch of lilies at Home Depot. This is one of the remaining lilies from all those years ago! When we moved, we brought the lilies with us. 

When I sit on the porch, paint anything, or gaze at these Father's Day lilies, I can't help but think of my husband. When you have spent decades with a person, your memories are their memories and their memories of your memories. Therefore, it is impossible to forget, to sever, or to erase all these everyday moments we shared. 

 

Friday, June 27, 2025

Friday, June 27, 2025

Tonight's picture was taken in October of 2008. Mattie was recovering from his first limb salvaging surgery and that day Anna (Mattie's physical therapist), was in his room trying to get Mattie to use his arms. With Mattie, you couldn't just ask him to do exercise. It had to be done in a creative manner. Through play! So Anna brought in a bunch of water guns and Mattie was going to town using his hands to soak Anna. Anna was a great sport and made amazing use out of a 2x4 of a room!

Quote of the day: Persistence and resilience only come from having been given the chance to work through difficult problems. ~ Gever Tulley

I had the opportunity today to talk with someone who knows about Mattie's cancer diagnosis and death, but she did not know specifics. So over the last several days, she has asked me to tell her about this journey. Somehow I just assume people know what managing a cancer diagnosis is like, but in Mattie's case, it wasn't just difficult it was horrific. 

I reflected today on what our life looked like back then. Mattie's cancer treatment kept us in the hospital more than at home, so the hospital was in essence our home for 14 months straight. Mattie's room was the size of a postage stamp (without a closet or private bathroom). Yet all three of us had to live in this space. We traveled with about 7-10 plastic bins that could be rolled into the room and stacked on every admission. These bins were filled with toiletries, plates, utensils, laundry detergent, toys, games, and whatever else we needed while in-patient. The hospital truly provided nothing to sustain us, so we learned early on that we needed to create a mobile unit! Our admission and discharge days were hard on us logistically, because while juggling Mattie (who was in a wheelchair), we also had to move all these bins, and don't get me started on the parking situation at the hospital. When I reflect on these moments, I do not know how we survived. 

As bad at that was, it was also the conditions in which we lived. Mattie's room had a cot and a reclining chair. I slept at night in the chair, mainly because my husband had to work by day. Which was a joke, because people were in and out of Mattie's room 24/7! If we got 2-3 hours of sleep each night, that was a lot. So imagine being terribly sleep deprived for 14 months and having to work by day, or as I did, care for Mattie and manage all life and death decisions. Which I assure you weren't a once a week occurrence, some days they were hourly!

Living in a hospital also exposed us to other traumas. The room walls were paper thin! I distinctly remember the first week Mattie was hospitalized, a child in the next room died in the middle of the night. The cries and hysteria next to us were blood curdling. It was so horrific, I had to put a pillow over my head to drown out the noise, as I couldn't take what I was hearing. Naturally besides intense sadness over a child dying, I couldn't help but think..... this could happen to my child too! 

Hospitals feed the patient, but not the family! So my friend asked me..... how did I eat? This was when I told her about Team Mattie. A community group comprised of incredible friends. These friends made sure we had dinner, tea, snacks, and all sorts of gifts for Mattie EVERY DAY for 14 months. Truly it was so noteworthy that all the staff in the hospital knew about Team Mattie. Out of our existence which was shear torture, Team Mattie was one of our main blessings. Kindness, which I will never forget, because I saw people come together, with a single goal in mind, and there was nothing we could have asked for that the Team did not find a way to provide. It was amazing, in a sea of sadness. 

What we endured together as a married couple is above and beyond most. Yet the one consistent in all of this was we had each other. We absorbed these horrors each day together, and for 14 months we worked tirelessly to try to stabilize Mattie's cancer. However, Mattie's cancer was very aggressive and six weeks off of chemotherapy, his cancer spread throughout his body. We moved from fighting for a cure, to fighting for comfort and dignity. Yet we continued to fight for Mattie, and we were always united. When you have experienced holding your dying child in your arms and hearing his heart monitor flatline, it transforms you as a person. It is at that point you realize that we have NO CONTROL of our lives or our destiny. It is a very frightening reality. 

As I always used to say....... we came to the hospital as THREE and left as TWO. I feel like the Agatha Christie story..... and then there were none, because my life went from THREE, to TWO, to ONE. No one truly knows what we endured, but what I do know is we endured it together, and sharing that very existential and life altering bond can never be erased. It is what defines us individually and as a couple.  

Thursday, June 26, 2025

Thursday, June 26, 2025

Tonight's picture was taken in June of 2009. Mattie was recovering from a sternotomy, which removed 7 tumors that spread to his lungs. Asking Mattie to use a tradition spirometer to exercise his lungs wasn't going to happen! So Mattie's care team had no problem getting creative. This was one of the fun activities.... a big water basin, with a Lego pirate ship, an octopus and a soccer ball. The goal was to get Mattie to take deep breaths in order to move the boat and the ball! 

Quote of the day: Two people, who were together once, are now strangers because of a pillar called betrayal. This is perhaps the saddest thing. ~ Warsan Shire

After my dad's physical therapy session this morning, I went grocery shopping. I have a two hour window to get things done after his session, because it leaves him wiped out. My mom was also very tired, so I settled them into their seats, with heating blankets (yes even in the summer), and I went on my way. 

While driving, I had the radio on. They were having a throw back Thursday, and played Shania Twain's You're Still The One. Frankly I do not consider 1997, that much of a throw back, but okay, moving passed that notion, I actually listened to the lyrics on a whole new level today. Ironically I have heard this song many, many times over the years. But until now, with the lens of deep grief, betrayal, and abandonment, the lyrics absolutely got me. It was as if the song was written for me. If you don't know what on earth I am talking about, here is the official video of the song....................................

The lyrics that got to me were.................

They said, I bet they'll never make it, But just look at us holding on, We're still together, still going strong.

Certainly people always thought my husband and I went together perfectly. In fact, unless you read this blog or talk to me directly, the majority of people in our lives DO NOT know we are divorced. It is true, marriages can fall apart after a child's death. In fact, I distinctly remember one friend saying to me after Mattie died..... if things don't work out in your marriage, everything will be okay. Truly I had no idea what on earth she was even referring to because from my perspective, our marriage was indestructible. Nothing could separate us. After Mattie's death we did HOLD ON, we were STILL together, and we were GOING STRONG and created a non-profit together in Mattie's memory. Truly we were the epitome of Shania Twain's song! 

As many of my blog readers know, I still wear my wedding ring. There are many reasons for this, but in my mind my husband is my husband. The man I married is etched in my mind. This is the man who left post-it notes all over the house for me, the man who wrote beautiful cards and notes to me over decades and the man who I could share anything with and never felt judged, but only emotionally supported. This is the man I married, and the person I am still morally married to. Yes legally we are divorced, but that is the law. Our religious and spiritual connection was sealed in the Catholic Church and in the eyes of the church, we are morally married. Marriage is viewed as a lifelong covenant between a man and a woman, reflecting the love between Christ and the Church. Our marriage could never get annulled and therefore, what God has joined together, let no man separate.

Why do I say all of this? I say it because when you are rocked to your core, turning to your faith is truly all one has left. I know what our years together looked like, I know what we managed, coped, and survived together. It is a hard process to mentally accept that the person I married no longer exists. I just can't wrap my head around the impossible, so instead, when I wonder were my last 37 years real (in July will be our 30th wedding anniversary and we dated 7 years before we married), I turn to the covenant of marriage and remind myself.... INDEED it was all real, and this commitment was solidified before God, family, and friends.

Wednesday, June 25, 2025

Wednesday, June 25, 2025

Tonight's picture was taken in June of 2009. Mattie was posing for a photo with his two best cancer buddies, Brandon and Jocelyn. It is hard to believe that both Jocelyn and Mattie died from osteosarcoma. Despite the age differences here, Mattie related to Brandon and Jocelyn. As they understood him, like none of us could! They were all working together at the art therapy table, constructing all the characters from Sponge Bob (a show that wasn't my favorite, but Mattie was introduced to it in treatment and the more I disliked it, the more he liked it, so given the circumstances, I went with it!). I will never forget these beautiful friendships. Brandon's mom, Toni, was sitting behind him in this photo! Toni and I became fast and close friends, as we were navigating the horrors of cancer together. Amazing how such a tragedy can bond you forever. 

Quote of the day: That’s the thing with betrayal- it’s always the people you love. ~ Fatima Bhutto

Something woke me up at 2am. Maybe it was the simple fact that I couldn't feel my right hand! The whole hand went numb. For over a month now, I have been dealing with neck pain and hand numbness. The hand issue, is a long standing problem with carpal tunnel, but the neck issue is brand new and scary! For the past two days, I am on around the clock Advil, I am using heat and trying to stay off the computer. During the Foundation's awareness Walk season, I spend more time than is healthy by a computer. I think my neck in some cases was frozen in a certain position, and this has impacted my muscles. The muscles around my neck are so painful, that it even hurts to swallow. 

This morning, I had to get up at 5:15am, because I had an MRI scheduled at 9am. I needed to get up that early in order to get myself together, breakfast made, the house straightened up for the day, and then I needed to get my dad up, showered, dressed, and downstairs for breakfast. At 8:15, I got my dad to his chair and I ran out the door, to drive about 30 minutes from my home. This was my first time taking an MRI in an office setting. Typically I am either within a hospital or outpatient setting. But here's the thing..... it is much more cost effective to have an MRI in an office setting, that doesn't carry the overhead of hospital fees and charges. Before doing this, I confirmed the caliber of the equipment, techs, and radiologists! It is a big radiology center, with multiple locations all over my region and they assured me the quality would be the same. 

Remember I used to live in the city. So the location I went to today, was a place I was familiar with, as it is a suburb of Virginia that I ventured to often when living in Washington, DC. In fact, the MRI center is located in a medical building I have been to many times before. Some how, that brought peace of mind. 

Every staff member I met today was a peach! The patient coordinator was a love! She couldn't do enough for me. The MRI itself was only 20 minutes long, practically half the time that it took me to do this within the hospital setting. I have taken MANY MRIs in my day and also sat in on them with Mattie. Today was the first day, that entering the MRI room, brought on intense dizziness. In fact, the dizziness continued throughout the test. Truthfully I did not think I was going to be able to walk! But they were very kind and gave me water, graham crackers and granola bars, and this seemed to kick me back in gear. The radiology tech said that dizziness is common, as some people are impacted by the magnets in the MRI machine! But this was a new one for me. 

Unfortunately my previous scans NEVER made it into this new center's medical imaging library. Because I wanted the radiologist to have something to compare today's scan to, I hopped into the car, drove to the hospital and worked with the imaging library to have my file electronically sent to the center. So it was more running around. Mind you my doctor's office assured me this was already done! It wasn't! Want to know why I do everything myself? Because I find at the end of the day not everyone shares my attention to detail. 

After the hospital visit, I returned back to the MRI center, and picked up a copy of today's images on a disc and let them know that all my files would be sent within the hour. While there, out of the corner of my eye, I noticed a man sitting by himself and he was red as a beet. Within minutes a woman came up to him (I assumed his wife). She said NOTHING, but sat by his side, put her arm around him and gave him a kiss. When you are at a testing center, I am very attuned that bad news can be received by ANY OF US at any minute! I knew exactly the scene that was playing out before my eyes, because I have experienced it before with Mattie. All I can say is, my thoughts are with each and every patient who are delivered horrific news each and every day. 

By the time I got home, I had to hit the ground running as Indie (the cat) had vomited all over the place, my dad urinated all over the floor, and the list went on! However, within two hours, the results from my MRI were in the portal and I learned that I had no evidence of disease. I truly celebrate these miracles, because God help me, I can't handle much more right now. 

Tuesday, June 24, 2025

Tuesday, June 24, 2025 -- Mattie died 800 weeks ago today. 

Tonight's picture was taken in June of 2006. Mattie was in his preschool classroom, in his favorite location... up in the loft. The loft had steps up, and it was like entering a tree house. I remember when Mattie first started at this preschool, the director of the school said that in all her years, she never saw a child go through so much tape as Mattie. Mattie apparently loved tape, not scotch tape, but painter's tape, that came in multiple colors. He apparently loved to tape up the entire treehouse! Truly when I heard this, it made me laugh. It was at this preschool that Mattie came into his own, made solid friendships, and to this day, many of my friends came from this school. 

Quote of the day: Betrayal can only happen if you love. ~ John le Carre

Mattie died on September 8, 2009, which was a Tuesday. Each Tuesday, on the blog, I track the number of weeks Mattie has been gone. Why do I do this? Because on that Tuesday, my life changed forever. It is a day that is permanently etched in my mind. Therefore all subsequent Tuesdays, are clouded by that horrific Tuesday.

When I noticed that today marks 800 weeks since Mattie's death, it caught me off guard! How could 800 weeks or 16 years have just flown by? It just doesn't seem possible. My life keeps chugging along, but in so many ways, when Mattie died so did I. With each traumatic loss, a piece of you disappears. Or these pieces just get consumed, and you are left with the ashes of your former self. I am sure this sounds crazy, but it is the reality and as you know I am NOT afraid of calling out the truth. 

I have several friends going through their own losses, either because of death of a spouse, or abandonment by a spouse. The one common denominator for all of us, is the feeling of NOTHINGNESS. Meaning nothing interests us, there seems like there is nothing left for us in the world, and forget defining who we are, what we want, or what we hope for. This may sound depressing, and you maybe saying.... wow, how is this possible? It is NOT only possible, but it is the reality of anyone deep into grief and/or trauma. Nothingness...... is as good as it gets! I am aware of this nothingness feeling, because I somehow survived Mattie's diagnosis and death. Which is why my current state is not as upsetting! I am not necessarily wondering.... what is wrong with me? Will I always feel this way? The simple answer is nothing is wrong with me or with my friends and YES unfortunately I will always feel this way!

Healing from grief and trauma is NOT about bouncing back to normal! If this is the hope you may have for yourself or someone you know, then I am afraid you are headed for a bad fall! The way to cope with the impossible, is to take it one day at a time. These feelings do not go away, and you do not magically return to "normal." As so many hope and wish for you! Instead, you learn to live with all these uncomfortable and unsettling feelings. They become more familiar to you, and with this familiar feeling, you somehow find your way in the world to let other people and experiences back in. But if you see someone close to you who is pulling away from you, shutting down, setting up barriers and boundaries, this is not only NORMAL, this is needed to cope with unimaginable pain, loss, and trauma. 

One of my friends says she could never survive if she did not talk to me or others she knows who are going through abandonment each day. Yes this maybe true, as it always helps to find others experiencing similar issues and knowing you are not alone. Together we find words to describe the unexplainable, the unimaginable, that makes no sense in our minds, hearts, and spirits.  

I admire women who choose to be single and are happy and able to have enriched lives. I wasn't meant to be single, I don't do single well, and I chose to get married to my college sweetheart at the age of 24 for a reason. Because for me, life is much better shared with someone you love and trust. Tomorrow, I head for my 90 minute breast MRI. To me this is a hateful test and given that my insurer is requiring me to go to a new testing site, I am not happy. There is some comfort in the familiar of a system. Especially when my emergency contact is NOW GONE! I head into this test alone physically and literally and it is a daunting notion, knowing that whatever the outcome is, I face that alone too. 

Monday, June 23, 2025

Monday, June 23, 2025

Tonight's picture was taken in June of 2008. Mattie was six years old and believe it or not, a month later he was diagnosed with cancer. Little did we know how our lives would be forever changed. I look at this photo now and it makes me pause. I pause because there are times I forget that Mattie did sit with us at our dining room table, and yet my mind has brushed over all our family meals together. Thank goodness for photos, which jog my memory! I also look at my parents here and realize how much younger and vibrant they were, and just like Mattie, I would never have guessed their decline. 

Quote of the day: No matter how badly people treat you, never drop down to their level, just know you’re better and walk away. ~ Unknown

When I tell you that most mornings I wake up and ask myself..... what shoe will drop today? I am NOT kidding. Again, today did not disappoint. I am so exhausted from the weekend and life in general, but I pulled myself out of bed at 6:45am. Thankfully I did, because at 7am, the person who helps me maintain the pool rang the doorbell. The pool company is working very hard at correcting my murky bathtub outside, which I have been looking at for a month now. Literally she added 30 gallons of chlorine to the pool on Friday, and our pool is a salt water pool. But it needed to be "shocked" back into normality. Slowly but surely it is working. I spoke with Jessica at length today in my pajamas, as there are various issues that I am seeing and needed to be reported. 

Once I finally got showered and dressed, I started on breakfast downstairs, before beginning my cleaning and caregiving routine. All of a sudden while prepping stuff, I heard my mom screaming from upstairs! Naturally I stopped what I was doing and asked her what was wrong. At which point she told me she was bleeding and couldn't stop the blood flow. Fortunately the blood was coming from her nose, and I have seen her massive nose bleeds before. Typically dry air makes her nose dry and then she blows her nose incessantly and that causes her to burst a blood vessel. If you have never seen a burst vessel, I assure you the amount of blood coming out is impressive. It was all over her and the floor. It looked like a crime scene. Once Mattie got cancer, there is no longer even a part of me that is squeamish. I have seen it all. The issue on top of stopping the blood was also calming my mom down. She was hysterical and shaking like a leaf. When someone is hysterical and traumatized..... you literally have to talk to them, like you are going back to basics. I told her to sit down. The to stop talking, then to take a deep breath and then I shoved a wadded tissue up her nose and ran to get an ice pack. I brought her back to her bed, had her sit on the heated blanket, and I propped her up with pillows, with her head slightly tipped backward. This enabled the ice bag to sit properly on the bridge of her nose. Literally I was at it with her for 30 minutes. I finally got the blood to stop and she began to calm down. 

Of course in the process my dad was confused, as I was in their bedroom. Therefore in his mind that meant he was ready to get up and start his morning routine. At which point, I literally told him... NO! STAY PUT! It isn't time to get up! I couldn't juggle him and her at the same time, and the one who was bleeding and hysterical took precedence! 

Any case, my morning schedule was thrown off and I got my dad to his memory care center about 15 minutes late. Which was a bit problematic, as he had a physical therapy session scheduled. After dropping my dad off, I went home and spent TWO HOURS working through June bills. This was a hateful month and you would think since I have been doing bills since September of 2023, that I would be used to it by now. I AM NOT! I HATE IT with every fiber of my being. In fact, overall, to me life is one big chore, with no end in sight, and with no hope for a future. My future walked out the door in September of 2023, and since that point, I have been forever changed.  YET AGAIN!

Sunday, June 22, 2025

Sunday, June 22, 2025

Tonight's picture was taken in June of 2009. This was Mattie's second 7th birthday party. His actual birthday was celebrated at the hospital. But then my friend Christine hosted a special party for friends in her backyard. One of the highlights was a Reptiles Alive show. As you can see, a snake was introduced to Mattie. If you don't know this, then let me assure you I HATE SNAKES! I am deathly afraid of them. My fear, only inspired Mattie's bravery! Mattie had no problem touching this snake, whereas I was screaming! This moment in time was so iconic, that Mattie's cancer buddy, Jocelyn, gave Mattie a stuffed animal snake, name Sunshine (to commemorate this photo!). Sunshine remains with me, and hangs overhead in my closet. It is the only snake I can tolerate!

Quote of the day: Two people, who were together once, are now strangers because of a pillar called betrayal. This is perhaps the saddest thing. ~ Warsan Shire

We had three guests today for lunch! The lady standing directly between my parents is Valerie. Valerie was my dad's assistant from 1979 to 1984. Though they only worked together five years, they were very close. My dad was the best man at her wedding and I was the flower girl. Valerie lives on the West coast and she traveled East with two of her friends, Amina and Connie. I am so glad she reached out to visit with us!

For the most part, my dad does not remember Valerie. I worked on jogging his memory all week. I prepped Valerie for my dad's Alzheimer's and she was great with him. She still calls him "boss." But don't think she can't hold her own with him. She is bright and quick on her feet. In my dad's hay day, he could be challenging to work for, but Valerie knew how to manage him! So they were a great team. Valerie and her friend, Amina, are also 911 operators. Hearing some of Valerie's stories were fascinating and truly you have to admire people who have the fortitude to handle such crises and chaos over the phone!

We spent six hours today eating and chatting. Thankfully these ladies can talk and hold conversation, because they provided a lot of good stimulation for my dad! 

Ironically after a full meal and time together, do you want to know the first question my dad asked me after our guests left...... when are we eating? 

Alzheimer's is very frustrating to me. I have gotten used to my dad NOT remembering anything I cook. No matter how hard I work, nothing stays in his head. In addition, I know that by tonight he won't even remember seeing Valerie. 

Today's meal:

Coq au vin

Mashed potatoes

Ginger carrots

String beans with mint and lemon

I did not realize it, but today was Amina's birthday. Apparently lemon cake is her favorite. I had NO IDEA. It was just happenstance that I made a three layer lemon cake! She was thrilled, and I learned ever since Mattie was born to always keep birthday candles in my home! You just never know when they come in handy! 

The ladies just loved the house. It is always fascinating seeing the house through another person's lens. I know what I love about it, but it is interesting to see what others notice. 

When we bought this house in 2021, I had such grand hopes! This was our first house together, and after living in an apartment all our married life, this was going to be a new chapter, another adventure. 

This house is the perfect entertainer's house! I figured we would have many parties here and lots of Foundation events! If I only knew how my life was going to change, I would never have moved. 

Valerie never met my husband and doesn't know the story of Mattie's death or that I am now divorced. In a way, it was an odd feeling for me NOT talking about either! I did not bring up all this heartache today, but that doesn't mean it wasn't on my mind. Valerie's friend, Connie, is in her 30s. She can see what I balance alone and she asked me in the kitchen..... what would I like to do if I had the time? Do I see myself going on a trip? Doing something else? My answer to her simply was.... I HAVE NO IDEA! I see myself doing nothing. For me, my life is over, and I go through the motions for my parents.