Tuesday, April 7, 2026

Tuesday, April 7, 2026 -- Mattie died 840 weeks ago today.

Tonight's picture was taken in April of 2008. Mattie was celebrating his 6th birthday and the theme was Scooby Doo. Mattie absolutely LOVED Scooby! He must have seen every episode and movie! That year we had his birthday party at a bowling alley! Literally his entire kindergarten class and many preschool friends were invited. Mattie started out strong, but as the party was coming to an end, he developed a fever and was quite ill. Ironically three months later, he was diagnosed with cancer. 

Quote of the day: You are not the darkness you endured. You are the light that refused to surrender. ~ John Mark Green

It was a three rings circus today. My dad had two physical therapy sessions and I also had multiple people over trying to repair the leak in the pool. My pool company told me today that I may eventually have to resurface the entire pool! I told her, this was NOT what I wanted to hear, as I just resurfaced a portion, and I can't tell you how ridiculous this was from a cost stand point. I told her if she has to resurface the whole pool, I will have to sell a kidney! Managing this house would be hard enough even if I were married, but alone, the stress I deal with daily, along with caregiving and the Foundation is beyond believable. I am quite sure that what I juggle would send a few people cowering in a corner on any given day. At one point today, I heard an alarm going off in the house! Seriously I thought I was going to jump out the window. I went room to room, and then realized the issue was the water sensor in the house. It was going off and shut all the water off to the house. By all intensive purposes it detected a leak! Where was the leak? It was at the pool. The pool company was running water from a garden house to refill it, and so much water was being used that this water sensor in the house decided.... NOPE there is a problem, SHUT OFF THE WATER! Thankfully my plumber taught me how to manage this issue months ago if it should arise. I am sick of everything being in an app! Too many logins and passwords, they rule and have taken over my life. 

When I tell you that I could write a how to manual for women on home ownership, I am not kidding, because I have had to figure out so much on my own! The next issue today is that my house lost its Wi-Fi guest passcode. My dad's physical therapist was trying to get on Wi-Fi today and no matter what we did, it was impossible to access. This of course sent me into another panic. But I contacted the Verizon field supervisor (yes I have gotten to know him, because I have that many issues!) and they will be coming back to my home potentially tomorrow or next week. 

If you have been following along, then you know I have been struggling with a wild migraine. I have taken every medication possible to enable me to function. But today, I had to also focus on paying many, many bills and taxes. I was so overwhelmed by all of this, but instead of flipping out, I took a deep breath, and just told myself..... you will figure it out!  

Monday, April 6, 2026

Monday, April 6, 2026

Tonight's picture was taken in April of 2007. It was Mattie's 5th birthday party! That day his entire preschool class was invited to the National Zoo! All the kids got safari hats and got to take a special private tour with a zoo keeper. Naturally the weather did not cooperate.... as there was torrential rain! What I thought was going to be a disaster turned out to be a big adventure! One of my friends took this photo and then Michele sent it to me! I am so happy she captured Mattie's excitement. What is hard to see, was Mattie's amazing emotional growth! He went from a toddler who couldn't handle noise, people near or touching him, to a child that truly appreciated having friends and all the fun that comes with sharing moments together! Mattie was amazing and courageous even before ever being diagnosed with cancer. 

Quote of the day: If it were this easy to "just get over" chronic pain, nobody would ever suffer from it. I totally do not understand how people can nonchalantly brush off how utterly debilitating, painful, and agonizing it is to have to struggle through every second of every single day. I think it speaks volumes to their character when someone can dismiss another's pain as if they were swatting a fly off their shoulder. Chronic Pain cannot be dismissed. The burdens and black clouds that hang over our heads cannot just be cleared or moved over. It takes incredible strength and resilience to walk through the darkness not knowing if you'll get to the other side where the light is. We all do it every single second of every day. For some, the light comes much faster than for others. ~ Marni Kyle

I got up today at 5:30am. I had to do this because I had blood work that had to be completed at my doctor's office and in order to get there by 10am, I needed to get up early to manage my dad, breakfast, chores and dropping my dad off at his memory care center! Since I had to fast for this test, I went through my entire morning without food. That may not sound like a big deal, but for my head.... it is a huge deal! Needless to say, a migraine was triggered this morning and now at 6pm, it hasn't gotten any better.

After the doctor appointment, I stopped at our local bank. When I tell you I know every teller and banker, I am NOT kidding. That is how helpful they have been to me since my divorce. One banker gives me a hug every time she sees me. But today I was chatting with one of the tellers. She is a part time caregiver to her mom, so we share stories each time I am in. Today, however, this same teller told me about the tragic death of her boyfriend, who was killed in a freak car accident. The accident happened in March of 2021, and to this day, she HATES the month of March. That may sound odd to others, but to me, it makes PERFECT sense! When our lives have been dramatically changed and the course of our future altered..... we remember! Which is why I could never forget July 23, 2008....the day Mattie was diagnosed; August 5, 2009....... the day we learned Mattie's cancer metastasized, and of course September 8, 2009......the day Mattie died. These days are etched in my mind, as are September 23, 2023.........the day my separation began, and October 31, 2024...... the day my divorce was finalized. 

This afternoon, I stopped with tasks and chores and I took my mom out for tea. Seriously by 1pm, she starts walking in circles until I take her out! Don't you know it while having tea and sitting still, someone kept ringing my doorbell. I could see this from my cell phone. This person was persistent. So I finally answered the door through my phone and it was a contractor who arrived to fix the leak in the pool. I have been dealing with this significant pool leak since last summer! It is finally being addressed but the contractors are driving me nuts. NUTS I TELL YOU! I had to run home and deal with the contractor's needs. 

Because of my migraine and running around, it would have been nice of the contractor to thank me for rushing home to accommodate him! After all I did not know he was coming! When I arrived home, he didn't say a word of thanks, but only made more demands. At which point, I blew up, and he proceeded to tell me how rude I was! If he only had some idea of what I was balancing, perhaps he would take rude off the table. Especially since I had opened up a hose bib for him last week, that was located by the pool. Instead, today, he insisted that every hose bib around the backyard be turned on. That was when I lost it! I then called my pool company to complain about this contactor and the owner of the pool company is coming on-site tomorrow because she knows I have reached my patience limit! 

Signing off today because the chores just continue and my head is pounding and I can hardly keep my eyes open from pain. 

Sunday, April 5, 2026

Sunday, April 5, 2026

Tonight's picture was taken in April of 2007. Mattie was celebrating his fifth birthday at the National Zoo. The theme was Lightning McQueen. A movie favorite of Mattie's! I will never forget that birthday party because there was torrential rain and the party entailed a tour around the Zoo! I truly thought it was going to be a disaster. I contacted all the moms and told them the children needed boots, raincoats and umbrella. Turns out the animals LOVED the rain, and they were all out and roaming about and I think the rain made it a real adventure for the children. 

Quote of the day: I can feel grateful for what I have while also feeling grief for what I’ve lost. ~ Joanne Cacciatore

We had my friend Mary Ann over today for Easter, which helped tremendously. It is very hard carrying conversation each day, constantly repeating myself with my parents, and therefore having a fresh perspective and a conversationalist in my house today was refreshing. Mary Ann went to graduate school together and we have been through many ups and downs in each other's lives! 

I would like to say that I have gotten used to not having my other half around! Forget it! NOT true! One of the many things I miss, is having my kitchen partner! We worked well together. In my entire married life I never carved a roast. So now when I have to do it...... I don't get it right. I am sure if I practiced or did not feel rushed juggling my parents and my dad's bathroom needs I would get it right. BUT I DIDN'T today! 

It was my first attempt at making scalloped potatoes, and I loved them. It is hard to believe something so easy, could be so tasty! I typically would have made mashed potatoes, but my dad hates them! My dad used to love lamb, but clearly not anymore. He chewed each piece today and then spit it out. He had a mound of chewed meat on his plate for me to clean up. Of course, if I were to ask him what he ate minutes after he ate it, he'd have no idea. Better yet, if I asked him about today, he wouldn't even know he had an Easter dinner! It is very upsetting to me at times, especially since I try to work hard at cooking and cleaning. 

Mary Ann and my dad share a birthday week! My dad was convinced that this plant and balloon were for him. We tried to explain multiple times that Mary Ann's birthday is two days before my dad's, but he couldn't get it! Instead, he kept saying that my birthday is two days before his! We were going in circles over this! But unfortunately it is true.... my dad has NO IDEA when my birthday is!

Me with my parents!

Saturday, April 4, 2026

Saturday, April 4, 2026

Mattie's 24th Birthday!

Tonight's picture was taken in April of 2006. It was Mattie's fourth birthday! That year the theme was dinosaurs. We held Mattie's birthday at a nature preserve and there was a wonderful naturalist who gave the kids a tour through the woods, the kids had the opportunity to hold animals you would find in the woods (like turtles, snakes, etc) and they even did a dig in a huge sandbox for plastic dinosaurs! Mattie had a wonderful time and you can see he was very happy that morning to see his birthday cake!

Quote of the day: Make someone feel something and you will never be forgotten. ~  Charlotte Eriksson

I love tonight's quote! As Mattie's mom, I learned and felt countless things each day as I raised him. Those feelings and thoughts are always a part of me, which is why he WILL NEVER BE FORGOTTEN! On Mattie's 24th birthday, I remember him. It is actually unimaginable to think I knew and raised Mattie for only 7 years and the other 17 years, I have had to nurture a memory. I have been sharing these memories with you on this blog since 2008. THAT IS 18 years of writing, DAILY! Some of you who read the blog have NEVER met Mattie, yet I am told you feel like you know him intimately. If that is the case, then I have been doing a good job, and I take that feedback and hold it with pride.

As 17 years have past since Mattie died, I am touched by friends who reached out to me today to tell me.... Happy Birthday Mattie. I can't tell you what a gift that is to a bereaved mom and so many of you know that the loss of Mattie is magnified (if that is even possible) by the fact that I also lost my other half. Will I ever get over the fact that I don't hear from my other half on Mattie's birthday or on the anniversary of Mattie's death? NO, NO I will not! But like so many other things I have to face, I have to suck it up, put it somewhere, and try to carry on the best I can. Thankfully I have ALL OF YOU, who help me carry Mattie's memory and legacy.   

This morning, I could see I received a delivery on my driveway. I went outside and found a dozen Georgetown Cupcakes. Thank you Cheryl! Cheryl is one of the gifts I received from my marriage. I am not sure where I would be without her support over the last two years. 

When Mattie was hospitalized, on special occasions, Mattie's child life specialist ordered him cupcakes from Georgetown Cupcake. They immediately became our favorite cupcakes around! Whenever I see a Georgetown Cupcake, I am reminded of love, support, and community! Cheryl KNOWS this! Mattie would have approved of this gift!

Today I baked a carrot cake! To me it is the perfect spring time cake. 

I do not have a crowd coming tomorrow. We will be joined by my long time friend, Mary Ann. I debated.... do we eat in the kitchen? The dining room table is so big, but after thinking this through, I decided.... NO tomorrow is Easter, and we will be in the dining room! 

If it were just me, I can't say I would be in the Easter mood. But given that my parents are alive and with me, I try my hardest to make these moments special. 

My kitchen is ready for tomorrow. I am making:

• a boneless half leg of lamb
• fresh mint sauce
• scalloped potatoes
• carrots with orange juice, cinnamon, and nutmeg (a favorite of my grandmother's)
• string beans with fresh mint and lemon
• carrot cake

I end tonight's blog with my Dearest Mattie letter. This letter was on display at Mattie's celebration of life event. Mattie LOVED hearing about the day he was born, and ironically during challenging times, Mattie wanted to hear this story. The last time I told him this story was on August 5, 2009.... the day I learned that his cancer metastasized and he was going to die. 

On Mattie's 24th Birthday, it is my greatest hope that he is at peace, united in heaven my our loved ones, that he found Sunny up there, and that he knows his mom loves him dearly and never forgets!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My Dearest Mattie,

It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.

This video is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.

Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.

So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.

I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.

When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.

The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.

Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and though those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!

Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!

Friday, April 3, 2026

Friday, April 3, 2026

Tonight's picture was taken in April of 2004, during Mattie's third birthday party. That year the theme was Blue's Clues! Mattie loved that TV show and I planned games, a scavenger hunt, and had a magic show for the children. This fellow was a student of mine from the University. He had a side business of doing magic shows and balloon animals. He even brought his bunny, Hobbes, to the party! The show was a hit and you can see Mattie was engaged!

Quote of the day: Even though our time in this life is temporary, if we live well enough, our legacy will last forever. ~ Idowu Koyenikan

In my email box, I received this certificate today from the top tier medical journal, Pediatric Blood & Cancer. One of the articles our research team published is apparently a TOP CITED article. What does this mean? It means that:

This is a research paper that has received an exceptionally high number of citations in other scientific publications, indicating significant impact within the field of pediatric hematology and oncology. These frequently referenced works often highlight critical, high-visibility topics like immunotherapy, clinical guidelines, and major clinical trials. 

To read the article, go to: https://onlinelibrary.wiley.com/doi/10.1002/pbc.31474

Between yesterday and today, I feel that I am receiving signs and reminders that my life has had purpose. First of all, I produced Mattie. From Mattie, I learned that childhood cancer is not just about the medicine. His death, sent me on a quest! Apparently the quest has had purpose and traction, as it is influencing the psychological and emotional care provided to all children with cancer and it is most definitely guiding and influencing evidence based research. WAY TO GO MATTIE! As tomorrow is his 24th birthday, I can't think of a better way to celebrate his amazing life, as his 7 years on this earth and his role in my life matters!

Thursday, April 2, 2026

Thursday, April 2, 2026

Tonight's picture was taken in April of 2003, at Mattie's first birthday party! Mattie had an Elmo themed party, because he was absolutely in love with that red Sesame Street character. Mattie could be multi-tasking or in another room. If he heard Elmo, he literally stopped in his tracks! I remember that party vividly, because Mattie was overwhelmed by the noise, by everyone in our home, and at several points in the party, we had to go upstairs to his room to regroup. Of course back then I thought it was always going to be like that.... but by his second birthday party, Mattie understood the notion of a gathering and loved it!

Quote of the day: Carve your name on hearts, not tombstones. A legacy is etched into the minds of others and the stories they share about you. ~  Shannon Alder

It was a challenging day of caregiving. However, in between those moments, a friend and fellow childhood cancer advocate tagged me on Linked In. She wanted to make sure I saw these postings! 

April 9 is World Psycho-Oncology Day. A Day that brings attention to the emotional and psychological impact of a childhood cancer diagnosis. Naturally this resonates with Mattie Miracle, as our tagline is..... IT'S NOT JUST ABOUT THE MEDICINE! 

The Pediatric Psycho-Oncology Network of SIOP (International Society of Pediatric Oncology -- an international professional organization) has launched a major social media campaign about April 9th. I was touched to see my caricature, quote, and story on-line. 

The quote: "loss of a child is not something a parent ever gets over, but instead the loss and how we cope with it becomes more familiar with time."

The postings says.................

When Dr. Victoria Sardi-Brown lost her only child, Mattie, to cancer, her world shattered. To Vicki, Mattie was her greatest teacher, showing her that childhood cancer is not only about the medicine--- Both the child and the family experience their own personal and shared emotional journey. 

In 2011, Vicki met Dr. Lori Wiener from NIH. Though Lori had never met Mattie, she spoke the same language of psychosocial care. That connection gave Vicki strength to transform pain into purpose. Just two months after Mattie's passing, she founded the Mattie Miracle Cancer Foundation, which helped establish the Psychosocial Standards of Care with Lori's support. 

Today, Vicki's advocacy ensures Mattie's legacy lives on. Her journey shows that while grief remains, it can be carried differently --- turned into compassion, action, and lasting change for families facing childhood cancer. 

I met Lori at the National Institutes of Health in 2011. I got connected to her through one of Mattie's oncologists. She felt that it would be good if I met Lori, because Lori would have some insights on the direction we wanted to pursue for Mattie Miracle. Honestly in 2011, grief and the loss of Mattie were still very raw, despite the fact that Mattie had died two years before. As soon as I met Lori, we just clicked. I found she was speaking my language. Not the language of medicine, but the language of feelings, emotions, grief, and trauma. 

As I always say, Mattie Miracle may have had the vision to standardize psychosocial care for children with cancer, but it is through Lori's leadership, skills, and her ability to assemble an amazing team of clinicians and researchers that the actual evidence based Standards of Care were designed and published in a top tier medical journey. The Standards are Mattie's legacy! His suffering and cancer journey have created guidelines for the psychological and social care of children nationwide, or as I am learning.... worldwide. 

Truthfully seeing this posting today made me pause. When Mattie died, I did not go back to work. I did not earn a salary and I do not have a 401K. That never crossed my mind because I was married and we were a team. However, I live in a society that I know is wrapped up with titles and income. From society's standpoint, I would be considered a failure. I on the other hand feel my calling is bigger than money and income. I am Mattie's mom, and as Mattie's mom my job is much harder than most moms, because I am naturing and keeping alive the memory of a dead child. I refuse to let his memory and life fade away, and I can't think of any better way of keeping his memory alive forever, than through the creation of Standards that will guide the care of ALL children with cancer and their families into the future! 

Wednesday, April 1, 2026

Wednesday, April 1, 2026

Tonight's picture was taken on April 4, 2002, on Mattie's birth date. I will never ever forget this moment in time. I was in labor for two days and by the time Mattie was ready to be delivered, my health was declining. I had a fever, developed my first migraine, and because of the epidural, I was so numb, I had no sensation of pushing. Mattie was born by an emergency c-section. When the doctor pulled him out of me, she commented that he was the most beautiful baby she ever saw. Does she say this to every mom? Probably, but to me MATTIE WAS THE MOST BEAUTIFUL BABY ever! 

Quote of the day: Of all the magic words in existence, words of kindness create the greatest transformation spells. ~ Richelle E. Goodrich

 

For the past two months, I have been working with Zachary and my friend Jane. Zachary was Mattie's best preschool buddy. He is now attending a business program and was required to shadow a non-profit leader. Over the course of our virtual meetings, we decided to work on a visual project together. Zachary and Jane meet with me every two weeks, and during that time, we have worked on developing story boards that highlight our M&M Wish recipients. Honestly this has been such a great project to be involved in because pairing the photos with family quotes is so powerful! To date Mattie Miracle has funded over $70,000 worth of wishes since 2022. I attached one of the slides we created, so you get a feeling for what I am talking about!

As tonight's quote points out, there is indeed magic in kind words. I had the opportunity to electronically communicate with my friend in Los Angeles and my cousin in Connecticut today. They both are well aware of the turmoil and pain I am living with, and frankly as I always say, I will NEVER EVER get over my divorce. But in an amongst the meaningful communications I received today were these two sentences below. They touched my heart and made me smile............................................................................................. 

 

I hope when we get to heaven you will let me come from my small bungalow to the huge mansion you have awaiting you to visit. ~ my family friend

Just know you are amazing and will always be amazing because that is the kind of person you are. You are a 'get things done' and 'how can I help you' kind of girl. ~ my cousin

I have to admit I don't always understand God's plan or why bad things happen to certain people. But I learned this reality years ago in my Catholic education, that we can't always look at things, situations, and issues with our human lens. I have no idea what is in store for my future, how could I? Because what I thought was true for the last 35 years of my life, now no longer exists. If it ever existed at all to begin with! All I know is I take it one day at a time and when I wonder if God is out there and looking out for me, I realize his love shines through in every kind word, card, and package I receive. These messages today reminded me that people know me, they know my character, my integrity, my losses and pains, and they undying commitment to those I love. Amazing how such kindness can transform a day! 

Tuesday, March 31, 2026

Tuesday, March 31, 2026 -- Mattie died 839 weeks ago today.

Tonight's picture was taken in March of 2004. Mattie was almost three years old. That day I was working outside on our deck and Mattie was right there, along side me. He was my little side kick. Naturally there was a car or toy with us too. It was one of the tell tale Mattie signs.... a car or toy was always in tow and of course his sippy cup was never far behind. It may not have been in the photo, but I assure you, that cup was right next to Mattie.

Quote of the day: The past beats inside me like a second heart. ~ John Banville

Last night was very challenging for me, as I had a horrible migraine. I woke up this morning with a terrible headache, but I was at least able to function. I was on a mission today. I wanted to visit Mattie's memorial tree at his school. Saturday will be Mattie's 24th birthday, and I have never missed visiting his tree on these special milestone days. Given all that I have going on, I won't lie, I thought about not going this year. I miss visiting Mattie's tree with my other half, caring for the tree together, and sharing memories of his life together. Now I am the sole keeper of Mattie's memory and legacy. As such I found the inner strength to visit the campus today. I put together ribbons and ornaments last night and packed the car so we would be ready for today. 

Today was not a memory center day, so I had my dad with me. I should have left both of my parents home, so I could visit the tree alone, but my mom wanted to come. Which meant that I had to take my dad too. I toileted him before I put him in the car. But don't you know 15 minutes into the drive, while I was on the highway, he pooped again. Though I typically would have turned the car around and dealt with him, my primary goal was to focus on Mattie. So I literally let him sit in it for two hours. I went to the Foundation's mailbox and then to the tree. I spent over an hour caring for the tree, removing Christmas ornaments and other debris, and then I tied a sunflower ribbon on the tree as well as placed sunflower and butterfly ornaments on the tree. With the wind blowing, the ornaments were twirling and looking beautiful.

Going to the campus is like a walk down memory lane. I remember dropping and picking Mattie up from school each day, I remember all the special events on the fields, and I of course remember his playdates after school. We were only on that campus for one year before Mattie was diagnosed with cancer, but it was a meaningful and memorable year. Mattie loved his school and made solid friendships. Back then, I thought we would have a lifetime together. I could ask why was Mattie taken from me when he was 7? Why are others lucky enough to have healthy children and see their children go from elementary school, to middle school and then high school? I have many questions, but no answers! Mattie maybe gone 17 years now, but time is irrelevant! IT MEANS NOTHING TO ME! The loss of a child is forever. It is very sobering as a bereaved mom to know that there will be NO PARTIES on Saturday and that I lost the one person in my life who I counted on to be able to share Mattie memories with. What I do know is if Mattie were alive today, he would be disgusted with what happened to our family and I know he would be an incredible ally!

Monday, March 30, 2026

Monday, March 30, 2026

Tonight's picture was taken in March of 2005. Mattie was almost three years old by that point. I took a photo of the living room, because it illustrated what I used to refer to as.... hurricane Mattie. This was a typical afternoon of play, things would be everywhere! After each play session, I would clean up and put things back in place. As Mattie got older, he would help me, because I felt it was an important lesson to learn the art of picking up after one's self, and what one had to do as part of a family system. A life skill!

Quote of the day: For a chronic migraine, there are no triggers, life is my trigger. For chronic migrainers there are no cures, there are only patches that will get you through to the next bout. Have we tried, acupuncture, herbal remedies, diets, standing upside down on our heads? Yes. The answer is if we have gotten diagnosed as chronic migraines then we have tried anything, and if by chance we have been able to get up and put our mask on that day please let us wear it, under our sunglasses and large hats. It took a lot to get there, and ain’t nobody got spoons for that. ~ Emily A

It is 5:45pm, and I have a full blown migraine. I was fine all day, and then I went outside to pick up branches and twigs. Also fine. While doing that, I decided to run a load of laundry.... jackets and fleeces for all three of us. What I did not realize, was that in one of my fleece's I had small burnt out lightbulbs in my pockets. I collected these bulbs from the garden lights over the weekend, as I had to replace 12 lightbulbs. Given all I juggle and how I jump from one task to the other, I forgot to throw the bulbs out, and I did not realize they were in my pockets before I ran the laundry. When I opened up the washing machine after it had run its cycle, I found glass everywhere! I spent two hours cleaning up the glass and the stress of this whole incident was enough to bring about a migraine. I could beat myself up over this, but then I remind myself, I am doing the impossible each and everyday! So this is as much as I can write today. May tomorrow be a better day!

Sunday, March 29, 2026

Sunday, March 29, 2026

Tonight's picture was taken in March of 2009. That day Team Mattie gave him this cute bunny hat for Easter. Mattie put on the hat, but if you can tell it wasn't a good or happy day for him. I think as Mattie's cancer journey continued, he felt more and more debilitated and therefore it isolated him more and more from his friends. Mattie was very aware of the fact that his life looked different from healthy children. For the most part, Mattie did not dwell in these feelings like an adult would, but nonetheless, if you scratched the surface, the issues were very evident. 

Quote of the day: As we advance in life it becomes more and more difficult, but in fighting the difficulties the inmost strength of the heart is developed. ~ Vincent van Gogh

Sunday is the only day of the week where I can sleep past 6:30am. However, at 3:45am, I was awakened by the power going out! Yes I am that sensitive that I can be jolted awake with any sort of noise or changes. While I jumped out of bed, I also heard a firetruck and ambulance. It was so loud that I thought it was on my street! It wasn't. I later found out that there was a car accident blocks from me that took down an electric pole, affecting over 300 customers. We were without power for six hours. Thankfully we have a generator, but today, I got a crash course in understanding when the generator is on and when we are on utility power. Literally you should have seen me, as I was walking around the outside of the house in my pajamas trying to hear whether other neighbors' generators were on! The sound outside was intense, as you could hear generator motors everywhere! The reason I did this, was because I have a Ting app that lets me know about the electrical activity in the house. The Ting app kept telling me that power was restored. However, if that was the case, I was confused as to why the generator was on! Which is why I went outside to see if neighbor generators were running, or just mine. I have now learned how to read the Ting app and I understand when they tell me power is restored, they are basically telling me that the generator is running. What I need to then see is a follow up message about being back on utility power. Honestly the things I am learning, I could write a book! I went from someone who knew nothing about the inner workings of the house, to being almost in full control!

Any case, it was a bad start to the day, and it only got worse with managing my dad's irritable bowel issues. I am quite certain the average person would not take him out. It is just too labor intensive. Literally I changed my dad before leaving the house. As soon as we got to the restaurant, I had to change him again, and yet again while eating. All I can say is my parents are lucky that I have a cast iron stomach!

Today I worked on recovering photos from 2016 (if you have been following my saga, then you will know that something happened to my shared drive, in which I lost photos, files, and other documents for decades). This was one of the precious photos I recovered! Taken in July of 2016. The month and year we rescued Indie. In fact we adopted her over the 4th of July weekend, which is why she is named Indie, for Independence Day! Indie was the queen of the household back then, but that all ended when we brought Sunny home in September of 2016!

I found this photo of our garden fountain! This fountain was created for me by Mattie and my other half. It was my mother's day surprise! This beautiful fountain used to sit on the deck of our Washington, DC apartment. It was filled with shells that we found over the years. I miss this fountain, but I will never forget the love and sentiments behind this meaningful gift. After Mattie died, I used to run the fountain, and the sound was a reminder of the special bond we shared.