A Remembrance Video of Mattie

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to me that you take the time to write and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful and help support me through very challenging times. I am forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically have stopped writing on September 9, 2010. However, like my journey with grief there is so much that still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with me, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki



April 4, 2026

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!


April 3, 2026

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!

April 2, 2026

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! 

April 1, 2026

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! 

March 31, 2026

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!

March 30, 2026

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!

March 29, 2026

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. 

March 28, 2026

Saturday, March 28, 2026

Saturday, March 28, 2026

Tonight's picture was taken in March of 2009. Mattie was admitted to the hospital for his next round of chemotherapy. If you look closely, you can see that the chemotherapy was red in color (Doxorubicin). With each admission, we decorated Mattie's IV pole with 1,000 praying origami cranes. These cranes now hang in my office, but we had great hope that the chemotherapy would work and that it would give Mattie more time with us. What I love about this photo was Mattie's ability to watch a movie and disengage from the infusion process!


Quote of the day: Cooking and baking is both physical and mental therapy. Mary Berry


I got it in my head this week that I wanted to bake Easter themed cookies. As I was searching for recipes, I came across Italian Easter Cookies. Here's the irony of this, when I was a little girl, my grandmother baked cookies similar to this, in the sense that they had the same texture and consistency. My grandmother did not frost her cookies, but in my opinion, frosting always makes me smile. It is more labor intensive to frost cookies, but it's definitely more festive!
The kitchen island was filled with cookies and the whole house smelled like a bakery. Though I have never found baking therapeutic, not like cooking, I did find focusing on this today took my mind off of my usual reflections, worries, and issues. 


March 27, 2026

Friday, March 27, 2026

Friday, March 27, 2026

Tonight's picture was taken in March of 2009. Mattie was in the child life playroom and doing a hands on activity. This was what Mattie LOVED most. As you can see he took the whole process seriously has he had his googles and gloves on! I have no idea where we would have been without that playroom. It was a slice of peace, where we could take a pause from our scary, uncertain, and stressful reality.

Quote of the day: A memory is what is left when something happens and does not completely unhappen. ~ Edward de Bono


This morning when I dropped my dad off at his memory care center, the program director came out to talk with me. I have been complaining about the center's schedule/activity calendar that is on-line. The schedule is supposed to give caregivers like myself a glimpse at what my dad is doing at the center each day. In my opinion the schedule is so bare bones that it is impossible to understand what the activity is and most definitely it is not helpful in triggering my dad's memory at the end of the day. In any case, as the director was discussing this schedule issue with me, she also suggested that I may like meeting other family caregivers whose loved ones are at the center. Guess what my reaction to that was? If you guessed NO, then you get a gold star.

Group support never resonated with me, not even when I was in graduate school. The problem with groups is I feel either the competition among members (meaning whose situation is worse than someone else's) or I want to help each member and therefore I am unable to focus on my own issues. That is me on a good day, but now, I am not only dealing with caregiving, I am dealing with a horrible divorce, managing a household, finances, the Foundation, and life without Mattie. Frankly as I told the director, I do not see a group that will work for me... I was different before my divorce, but now I am off the charts different. 

Later this afternoon, I sat back down at the computer to try to recover photos and files. This is a massive project that will take months, as the extent of the shared drive issue is far greater than I thought! I focused on 2002 photos today, the year Mattie was born! If I had lost these photos, I would be hysterical. So I recovered many of them and have backed them up. 

This photo was taken on our deck in Washington, DC in March of 2002, a month before Mattie was born. By that point, I was on medical rest, where I couldn't spend much time up on my feet. As you can see, I was very pregnant and holding one of my favorite cats, Patches! Patches was the best! Which was why I nicknamed her, Nurse Patches. If I was sick, she stayed right next to me, and when Mattie had cancer, she did her nursing rounds (that is before we had to board her at the vet for a year, as we were living in the hospital and never home to care for her). 

March 26, 2026

Thursday, March 26, 2026

Thursday, March 26, 2026

Tonight's picture was taken in March of 2009. Mattie was pictured next to one of his art therapists, Jessie. Mattie created this piece of modern art. Little did I know, but every project Mattie build and designed while he was hospitalized became his legacy items. This painting hangs above my desk and I see it daily, and of course am reminded of this moment in time!


Quote of the day: Leave nothing for tomorrow which can be done today. ~ Abraham Lincoln


This morning my dad's physical therapist came over for a session. My dad works with four different therapists. This therapist takes my dad outside, whenever the weather is warm, and they do the entire session in the fresh air. What I concluded is this WORKS for my dad! He literally walked 25 minutes today on our street. Which is unheard of, because typically he complains and wants to sit down. While my dad was working with the therapist, I encouraged my mom to walk outside too! So she and I walked around the block. At one time my mom walked without holding my hand, but now I can tell she psychologically prefers to hold my hand, so that she doesn't fall. 

I had the plan of acknowledging Foundation donations today! Forget it! I got derailed on a funding application. This application showed up in my email box this afternoon and trust me when I say.... this isn't an easy application. I do it yearly, but ironically it never gets easier, as I have to do an annual report, financials, bar graphs, pie charts, and budgets! I devoted hours to this today and I just submitted the application thirty minutes ago! To me this is a huge accomplishment! 

One of the bar graphs I created today illustrated Mattie Miracle's overall funding from 2010 to 2024. Can you believe that in 14 years, we raised over $2 million dollars for the cause?! 

Mattie Miracle is a labor of love. As I always say, "it is my second baby, in memory of my first baby!" I am very proud of the funds we have raised, the work that we have done and continue to accomplish and of course I am deeply grateful for all of our supporters who stand behind our mission! 

March 25, 2026

Wednesday, March 25, 2026

Wednesday, March 25, 2026

Tonight's picture was taken in March of 2009. That day we took Mattie to the circus. It was our first and last trip to see the circus. Mattie was gifted a special VIP booth, which enabled him to attend and not be around crowds where he could have potentially gotten sick. It was a big event for Mattie and he absolutely loved it. He was glued to watching the show and before the show started we bought Mattie several light up circus toys. He had a ball seeing them glow when the lights were dimmed in the arena. It was a special moment in time and his smile said it all!




Quote of the day: I go to nature to be soothed and healed, and to have my senses put in order. John Burroughs


This morning after I dropped my dad off at his memory care program, my friend came over to catch up and walk. I haven't walked the neighborhood since her last visit, which was months ago! I used to be a person who walked daily. Sunny made sure of that! But after Sunny died and then caregiving alone, I have had no interest in walking anymore. Which of course is not good for my physical or emotional health. Walking was something I always did with my other half as well! We loved and appreciated nature and even when facing great loss and trauma.... we kept walking. It became a form of our therapy! It is one of the countless things I miss!

If you have been following my saga, I am still trying to recover lost electronic files, photos and documents. I thought the problem was contained to just a few years of photos! NOPE! It is far more extensive and I am desperately trying to address this.... by doing a little recovery work each day! All I know is I have been robbed or a future, there is NO WAY I will have my past erased. 


I have been working on recovering photos from 2023. As I was downloading photos, I came across a series of post it notes! I naturally saved all the actual notes, because they mean a great deal to me. They remain in my closets and I still look at them daily to remind myself that I was loved and this was NOT a figment of my imagination! Keep in mind that I have MANY notes from over the years, but these series of notes occurred in March and May of 2023, which is ironic because by September of 2023, I was separated. If I am confused by what transpired, then all I have to do is look at these notes!  
I used to find notes all over. 
Yes even in the refrigerator!
In my cabinets!
On my dust rags (which I use daily), so it makes sense to leave me a note there!
On my handheld vacuum! Another thing that I use daily!


March 24, 2026

Tuesday, March 24, 2026

Tuesday, March 24, 2026 --Mattie died 838 weeks ago today.

Tonight's picture was taken in March of 2009. I will never forget this day! Mattie was on this bone scan machine for two hours! Keep in mind that Mattie was unable to eat or drink anything from the night before, in order to prepare for this scan. For two hours Mattie had to sit still and manage this machine coming close to his body. His reward for all of this was he got a vanilla frosted donut and trip the restaurant on the hospital campus for a special lunch! Which included shrimp.... a Mattie favorite!


Quote of the day: At the end of the day, we can endure much more then we think we can. ~Frida Kahlo


In between caregiving and other tasks, I continue the hard task of retrieving files, data, and photos that were lost on my shared drive. I try to do a few folders a day. Today I worked on finding photos from 2022. I would be very unhappy if I lost this photo of Sunny! Sunny loved his home and he was a devoted companion to the day he died. 

In this photo, Sunny was sitting on our front step. He loved checking things out while we were outside and he was so well behaved that if we called him, he listened and complied. After Mattie died, life was absolutely grey. It was hard to interact with the world, and then I rescued Sunny. The greyness of Mattie's death was still all around me, but Sunny had a way of breathing new life into my world. When we lived in the city, each day that I walked Sunny, someone would stop me to comment on how beautiful Sunny was! With Sunny by my side, I reinvested back into the world. Now without Mattie, without Sunny, and without my other half, life is bleak. 

On my wedding anniversary in July of 2022, I received this card and this 
Willow Tree figurine of a married couple. The front of the card reads,

"I've said it before and it's still true.... I don't know what I'd do without you"

As you can imagine I have great commentary about this, because a year later, I found myself separated!






When I look at this photo of myself from July of 2022.... yes I looked tired from caregiving, but I looked much happier. When I look at myself now, all I see is a  shell of my former self. 




March 23, 2026

Monday, March 23, 2026

Monday, March 23, 2026

Tonight's picture was taken in March of 2009. Mattie was home between hospital admissions and as you can see we were having a busy afternoon building Lego sets. Legos were therapy for us, because while building and creating, we took a mental pause from cancer, treatment, pain, and fear. Literally that year, we constructed every Lego kit in the store. If it made Mattie happy and engaged.... we did it!


Quote of the day: Friendship … is born at the moment when one man says to another, ‘What! You too? I thought that no one but myself…~ C.S. Lewis


This morning after dropping my dad off at his memory care program, I came back home and took my mom to the salon in Washington, DC. The last time we were at the salon was in November. Between my dad's hospitalizations, winter, and my life, I just did not have it in me to go to the city. It has been hard balancing my mom's hair at home, and I was thrilled that we both could get haircuts today and nails done. Keep in mind that I have known the salon owner since I was in my twenties and my manicurist has been doing my nails since 2009, when Mattie died.

Given the years I have been working with these ladies, they have become more like friends. We know each other's stories, hardships, and nightmares. Each time, I meet my manicurist, we pick up from where we left off. It is quite adorable because for years she would tell people when I came into the salon that she was seeing her therapist today. Meaning me. Of course I wasn't her therapist, but what this always said to me was the type of sharing and chats we had, were not typical for her with other customers. 

What I do know is that when I enter the salon now, there are people there who truly want me to feel relaxed even if it is for just an hour or two. They are aware of my intense caregiving and the incredible loss of my marriage, not to mention the loss of Mattie. I in no way think that I am the only person in the world who suffers grief and trauma. I am always cognizant that each of us carries our own hurts and experiences and honestly every time I hear a woman share her story with me (whatever that story may be), my conclusion is we truly are amazing. It is incredible the challenges and heartaches we face and the courage and strength we have to navigate these nightmares. I really believe these experiences give us the insights to empathize with others. 

What I noticed after Mattie died, was people felt at ease sharing their issues and concerns with me. I am not sure if they thought I would understand and not judge them or the simple fact that I lost what was most precious in life that whatever they told me I could mentally handle! Whatever the reason, despite all that has happened to me, I still appreciate other's sharing their stories with me, because I believe within every story there is something that can be learned and appreciated. 

This is one of the many photos I lost but have been working to retrieve! It is a labor of love to find every file, photo and document I lost from the shared drive! So why am I showing you this photo? Because this was our apartment in Washington, DC. A stone's throw from the salon I went to today. Every time I go to the salon, I pass our apartment complex. I always look up at my apartment windows and remember what my life USED TO look like. This was one of the gardens we created on our patio. I always called this space "my secret garden." As I look at these windows now I ask myself..... would my life look different if we never moved to this house? My answer is always YES! 

March 22, 2026

Sunday, March 22, 2026

Sunday, March 26, 2026

Tonight's picture was taken in March of 2009. I will never forget that day as several United Airline employees came to visit the clinic. They brought teddy bears with them and Mattie was excited to meet them and very happy to accept the bear. These visits from outsiders were a hit or miss for Mattie. Sometimes he did not want to hear noise or interact with anyone, but this was a good day and I am so happy I captured that moment in a photo. 





Quote of the day: Spring is when you feel like whistling, even with a shoe full of slush. ~ Doug Larson


With the official start of spring yesterday, I got a burst of energy to take on some cleaning projects. I did all the bed linens and today, I dusted everything upstairs and thoroughly cleaned the bathrooms. I actually like to clean, it makes me feel productive and seeing things organized and clean makes me feel in better control of my haphazard life. The problem however, is I do not always have time to clean. Not the way I want to. But with a beautiful 80 degree day, I was motivated to take on certain projects. 

Of course with spring upon us, that means that I will need to think about buying annual plants and begin gardening. It is a large under taking for one person, but I find that taking it a little bit at a time is the only way it can work. Last year the gardening associate at Lowe's got so used to seeing me, that she would ask me how my planting was going each week. As always the hardest part is getting started. Once I start something then it is a lot easier to continue the project. Gardening however, was something I always did with my other half. I can't tell you how many gardens we planted over the course of our 35 years together. We even shared this love with Mattie, who also got in the mix. Which is why I used to call Mattie, "Farmer Brown."

For the most part I prefer to do things myself. I am practically forcing myself to do this because I want to be self reliant. I have learned a painful life lesson, as the only one looking out for my best interest is me! However, there are some tasks that I sometimes need help with and last week, when my gardener came over to weed and mulch for the spring, I showed him my deer fencing. A lot of it was coming down in the backyard and I just did not want to take a ladder and deal with it. His crew did it one, two, three and for them it was easy. So I view that as one chore off my long to-do list. 

If you have been following my saga, that you know I LOST photos and documents from the last ten years from my shared drive. Tonight, I decided to Google.... can missing files by retrieved from a shared drive? Of course the answer was yes, but it depends. The first thing recommended to do was to look for a recycling bin in the shared drive. I had never seen a recycling bin on the shared drive before, but I looked for it, and FOUND IT! I then clicked on the years that were missing. I immediately went to 2016, and sure enough, all my files were in the recycling bin, well at least for 2016. Needless to say, I will be spending this week on copying them from the recycling bin and then saving them on the cloud and my external hard drive. I NEVER want to have this happen again!

March 21, 2026

Saturday, March 21, 2026

Saturday, March 21, 2026

Tonight's picture was taken in March of 2009. Next to Mattie was a his best preschool friend, Zachary. These boys were inseparable in preschool, and since they played together every day after school, I got to know Zachary quite well. He was a loyal and devoted friend and that day they built this Lego Star Wars kit in the hospital. It is quite meaningful that now, as Zachary is in his twenties, that I am working with him on a non-profit based class project. I have no doubt this would make Mattie smile to know that we are still connected!




Quote of the day: Aversion and anger almost always arise as a direct reaction to a threatening or painful situation. If they are not understood they grow into hatred.Jack Kornfield


Last night, I went to my computer to look at files and photos and to my dismay, I couldn't find them. I can see my very organized file folders on the screen, but when I click on them, they are empty! For years, we used a shared drive in our home. So we could each have access to files and input things in one place. It made sense, but honestly unless you are computer savvy this method is a nightmare. It is a nightmare because something happened to the shared drive and I have lost material from 2016 to today! So ten years worth of photos and documents. We used to have an external drive that backed up these materials, but when I took it to Best Buy they said it was inoperable! So can you imagine how I feel about losing ten years worth of data? I have had every emotion in the last 24 hours from sheer hatred, anger, hostility and absolute disgust. I have lost so much in a short period of time, but to lose memories and documents is over the top. I stayed up to 2am, to at least back up everything related to Mattie Miracle. Thankfully all those files of 17 years are intact. It is my personal life, that is missing. I don't like being erased in reality or virtually. 

I certainly have some photos on my phone and though these photos are backed up on the cloud, I can't seem to get them onto my computer. Literally I am ready to flip out, because I haven't had one peaceful day since my separation and now divorce. In between my dad's physical therapy sessions, countless bathroom accidents and taking my parents out for lunch, I have been glued to the computer in hopes to finding solutions. 

While out at lunch, a song started playing in the diner. I literally only have to hear the first few notes of this song, and I instantly know it is Peter Cetera's, Glory of Love. Yes I am a Cetera fan, but I attach this song below from the Karate Kid movie series. Now why is this song/movie series a big deal? It is a big deal because in 1984, my parents moved me from New York to California. It was a very difficult move for me, to leave behind my school, family, friends, and everything I held dear. It was in the summer of 1984, that the first Karate Kid was in theaters and I saw it. I clung to that movie, because it was about a young kid who was also transplanted from NY to LA, and the challenges he faced along his journey. It may sound silly, but to an impressionable teenager, who felt misplaced, identifying with a movie character facing similar feelings helped me. It made me feel less alone. Over the course of my life, whenever I heard the song, Glory of Love, play on the radio, it was like a premonition..... that not something bad, but something good was about to happen. Whether this is true now or not, hearing this song today, temporarily made me smile. Maybe it is a sign, maybe I will find all my missing photos and documents, or maybe I will find moments within the future where I do not feel in total crisis, angry, confused, and overwhelmed. It is the hope.