Saturday, April 11, 2026

Saturday, April 11, 2026

Tonight's picture was taken on April 4, 2009. Mattie was celebrating his 7th birthday in the hospital. That day, his art therapists made him a special card. To you and me, a roach card probably wouldn't be appreciated. But Mattie had a fascination with these bugs. Probably because he knew I hated them. The year we were in the hospital, the roach, became quite prominent..... Mattie painted a huge roach on the ceiling of the outpatient clinic, he had rubber roaches to scare nurses, he made clay roaches and the list went on! Whatever inspired Mattie to engage with the world and forget cancer for a minute or two, I applauded!

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

As my dad is celebrating his 91st birthday on Sunday, I tried to go back into my electronic folders to look at photographs I took over the last 6 years. If you have been following along, then you know I have been having issues with my shared drive. This is a drive we used for years, in which we stored a LARGE amount of data. Much more data than I would wish to pay for to store documents and photos on the cloud. The shared drive basically has my life on it from the Foundation to years and years of photos. Which is why you can imagine how devastated I am that parts of the shared drive are missing. It is bad enough that the history of my marriage and our life together has been erased, but now not to have the actual photos, greatly upsets me. I am fortunate that I have many photos on my phone, but that doesn't even come close to the amount of photographs captured and stored over decades on the shared drive. 

All of these photos were taken in 2020. It was NOT a good year for my dad, as he developed urinary sepsis and then an impacted colon. Both issues required a week of hospitalization. Since it was during COVID, none of us were allowed in the hospital and his cognitive decline was steep without our presence. 

These photos were taken in Los Angeles. Though I did not like living in LA when I was in high school, I definitely enjoyed visiting it often. Now that my parents live with me, I had to say good-bye to my Los Angeles visits. In addition, with my divorce, I feel in so many ways my life is over. I have no interest in traveling and definitely do not have any sort of vision for a future. To me it has been a crushing loss. 

My dad used to love going out to eat. He loved food and had a great appetite. That is unfortunately changing now. 

This was a restaurant close to my parent's home in Los Angeles. I grew up going there! My grandmother loved it too.

My dad loved having outdoor time. Now I rarely can get him outside, he has no interest!

This photo was taken after my dad's hospitalizations in 2020. He had a long road to recovery but he did it! Or I should say we did it!

This photo was taken in December of 2020, we were celebrating Christmas in Los Angeles. I had made this coconut layer cake and paused for this photo. When I see this photo and look at myself today..... there is a night and day difference. There has been a profound toll on my mind, body, and spirit from 24/7 caregiving and my divorce. Whatever spark I had, was extinguished the day I became separated. 

Some of you could be reading this and wondering why on earth I am lamenting about my divorce. After all many people get divorced each year. That maybe true, but divorce doesn't fit my personality. I become committed and attached to people and things and will do whatever is necessary to keep those I love happy. I lost so much with Mattie's death, and now losing my other half is just indescribable. It is a loss I will never get over. Naturally as I am caring for my parents, I experience a little bit of loss each day. So overall, I would say that I am DROWNING in extreme loss.  

Friday, April 10, 2026

Friday, April 10, 2026

Tonight's picture was taken on April 4, 2009. It was Mattie's 7th birthday party, which we held in the hospital's child life playroom. Mattie's was gifted Georgetown Cupcakes to celebrate the day with his friends! As you can see Mattie was having a good time and had frosting all over his face! It was a big day for Mattie, as he spent hours decorating the playroom and planning games and activities to do with his friends. In addition, Mattie's close buddy in cancer, Brandon, came to the hospital too and stayed the entire time. You should note that Brandon was 10 years older than Mattie and he lived over an hour away from the hospital. So Brandon's decision to visit with us was a special commitment! Brandon helped all the children at the party and I know Mattie felt at ease around Brandon, because Mattie knew that Brandon understood what it was like to have cancer.

Quote of the day: We do not have to become heroes overnight. Just a step at a time, meeting each thing that comes up, seeing it is not as dreadful as it appeared, discovering we have the strength to stare it down. ~ Eleanor Roosevelt

My dad is turning 91 on Sunday! We started celebrating today, as I took my parents to a French restaurant that we visit on special occasions. 

I have been going to this restaurant for years. I was introduced to it by a friend, who actually took me there on my birthday many years ago. I fell in love with the old world charm and the setting! Remember I used to live in the city and this restaurant is about 40 minutes from the city. It is surrounded by greenery and gardens! So in comparison to my city views, this restaurant is serene and peaceful! 

Taking my dad out now is challenging. Mainly because whatever goes in, quickly comes out. Which means that I am going back and forth to the bathroom with him, and it involves full changes! My dad walks slowly and with a walker. He also can easily trip on any rug that is on the floor, so I have to watch him like a hawk. 

The managers know me at this restaurant because you should see what I am carrying with me. I think it is an unforgettable sight. I have a tote bag for my mom filled with seat cushions (as she finds the restaurant chairs too hard), I have a seat cushion for my dad, and a tote bag for him as well filled with clothing changes, garbage bags, gloves, etc. You would think I am moving in, rather than dining! During one of the many bathroom trips I took today, one of the managers came over to sit and chat with my mom. When I got back from the bathroom, my mom said that the manager admires me and thinks I am a very unusual person, as he says he doesn't see many daughters who do what I do. 

Any case, I tried to make today a nice experience. But it is hard.... my mom is glued to Facebook and my dad no longer talks. He will respond to me with a word or two, but for the most part, he is trapped in his body and his brain is somewhere else. It is a sad commentary. He was once a person who loved food, like myself, now not so much. 

The three of us! 

As for the pool, it may just do me in! I went out at 7am, and the water level was slightly down from yesterday. But this evening, it dropped another inch. So I went back out and marked the water line and sent another panic email to the pool company! While I was outside, I happened to bump into my neighbor. She was out walking and we chatted for 40 minutes. She alerted me to a scam that just occurred to her! Someone from a pest control company came to her door. Since this person said he was from the company she has a contract with, she assumed he was legitimate. Any case, he proceeded to tell her that her house has a mouse infestation and he needs to inspect her attic. He did and came back downstairs with photos. Photos of the infestation. He then said that he needed $15,000 to correct this problem. He even mentioned that other neighbors on our street have this issue! He was pressuring her for a decision and for money! Fortunately she was smart enough not to do this! After she got him out of the house, she called her exterminating company who confirmed this was not one of their employees! HONESTLY how scary! 

I mention this story because truly this could happen to any of us! But the one tell tale sign that something is a scam is the pressure to make an instantaneous decision and to demand money right away. All I know is whomever comes to my door, usually doesn't get very far with me. I have my handful of trusted people who I turn to for my house's needs. If you aren't on my list, you aren't getting anywhere with me!

Thursday, April 9, 2026

Thursday, April 9, 2026

Tonight's picture was taken on April 4, 2009, Mattie's 7th birthday. Mattie had two birthday parties that year. One at the hospital on his actual birthday and the other at my friend, Christine's house a month later. Mattie was so excited in this photo, because friends were coming to celebrate his birthday after school. Mattie and his child life intern (Meg), spent hours decorating the child life playroom and picking out games and activities to do at the party! Meg even got Mattie out of his wheelchair and using his walker to help with set up! Meg was a force and Mattie responded to her, as she was able to inspire Mattie to take a few steps in ways that most of us couldn't! 

Quote of the day: Give yourself credit for the days you’ve made it when you thought you couldn’t. ~ Unknown

At 6:30am, I got up and walked outside to look at the pool! What I found almost sent me over the edge. I found that the pool lost over an inch of water! I can safely say anyone who is thinking of owning a pool... FORGET IT! It isn't worth it. It is a royal headache and a massive expense! When we were looking to a buy a house in 2021, our goal was to find one without a pool. But after seeing over 60 houses, I fell in love with the one we bought because of the greenery. Given that my parents were moving from Los Angeles, I figured this house would remind them more like life in California (minus the winters of course!). Any case, back to my panic! When I say panic, I am not exaggerating. 

Since last summer, I have struggled with the pool! Of course at first I did not realize I had a leak, but every week the pool company would tell me..... you need to fill your pool. I then started to figure it out.... something was wrong. I then started recording water levels daily and finally got a company here to do a bubble test. Which tested for leaks in the pool, in the pipes under the ground, and in the pool equipment. The one blessing is that I did not have pipe issues or more significant problems. On Monday and Tuesday of this week, a portion of the pool was resurfaced. I was told this would solve the problem. I saved up for months to accomplish this horrid task! So you can imagine that after paying for this ordeal, I expect NOT to lose water in the pool. At 6:30am, I literally took photos and contacted my pool company's owner. She got right back to me and later sent over Evan. Why do I mention Evan? I mention him because they know when he is around, my stress level dissipates. He is calm, professional, and knows his stuff. So when he tells me something, I know I am getting solid insights! 

I couldn't hang around to meet Evan, because I had to drive to the city to take my parents to the dentist. However, when the phone rang while I was driving, I answered it. Evan is keeping track of the water levels for me and we will see what tomorrow holds, but he thinks this water drop is understandable given the multiple back washes (reverses water flow to clean the filter) he had to do in the pool this week. All I can say is I need a miracle! You know I will be up at 6:30am tomorrow examining that water level. 

In the grand scheme of things, I do not know how I am functioning. I am not just dealing with a migraine, I am dealing with a cluster headache. Thankfully I do not get them often, but when I do get them, they can last for weeks to a month. NOTHING helps to relieve the pain. It isn't just a slight pain, it is intense. It feels like a screwdriver is going through my eye, my whole face hurts to the touch, my eyes are teary and I can hardly keep my eyes open. It is no wonder that cluster headaches are called suicide headaches! They can make you feel absolutely unstable. So how I managed a cluster headache today and transporting my parents to the city, pushing my dad in a wheelchair and coping with his multiple bathroom accidents is beyond me. My dad's hygienist has me laughing because she told everyone at the office today that if she gets sick, she wants me taking care of her. She finds me so unique because she says she hasn't meant many people who would devote their lives caring for other people in such an intense manner. Perhaps! But I assured her there are thousands of family caregivers in this country! We do what we have to do, for various reasons, but anyone who knows me knows if you are under my care, I take that VERY seriously. All my life, even as a kid, the needs of others always outweighed my own. I am aware that this is both a wonderful and detrimental thing!   

Wednesday, April 8, 2026

Wednesday, April 8, 2026

Tonight's picture was taken in April of 2008. In fact, this is a follow up photo from last night! Last night's blog photo featured Mattie with his birthday cake. Mattie was very excited to have a bowling party and to be surrounded by both his kindergarten and preschool friends! Truthfully Mattie had come so far emotionally, from the days when he was a toddler, trying to cope with sensory integration issues and becoming overwhelmed by his environment and with other people. I am a firm believer that early intervention made a huge difference in his life, so that by the time Mattie entered preschool no one knew he had overcome these issues! But back to the photo..... while at Mattie's 6th birthday party, he developed a fever. When we got home, Mattie took to the couch and fell asleep! Mattie was NOT a napper, so I knew when he fell asleep during the day, he was sick! Of course three months later, Mattie was diagnosed with cancer. 

Quote of the day: Strong people alone know how to organize their suffering so as to bear only the most necessary pain. ~ Emil Dorian

I went to bed with a migraine and I woke up with it too. I have been struggling now for days. What would help is less stress and more sleep. But since that is not going to happen, I push on. When I went downstairs at 6:30am today, I looked out the window at the portion of the pool that was resurfaced and I freaked out. Why? Because all the water I put into the pool yesterday was gone. The water level went down over an inch. I got my painter's tape out and marked the water line with today's date and then sent an email to the pool company. This was a significant repair and therefore I expect it to solve the problem! So I have been contending with that stress on top of everything else. 

This afternoon, after I picked my dad up at his memory care center and got my parents settled, I went outside to the backyard. I cleaned up flower pots and hopefully within the next week or so, I can begin purchasing plants and garden. I find the only place where I find some sort of peace is outside. I have been separated since September 2023 and divorced since October 2024. In all reality, it feels like it was just yesterday. I am no further along in my feelings about this, other than I continue to feel devastated with no hope for a future. Certainly not the future I imagined. Each day, I wonder how could I be so wrong about my marriage? Thankfully I am not the only one shocked and confused by what is happening to me, which helps in a way, because otherwise, I could feel like I could lose my mind. 

Signing off because being by a computer hurts my eyes and head. Tomorrow, I take my parents to the city for their dentist appointments. This is an enormous stress for me, because it involves using a wheelchair and managing my dad's toileting needs while he is getting a dental cleaning and exam. It is also hard to believe that my dad is turning 91 years old on Sunday! I am glad my dad continues to live a long life, but like so many things, it makes me pause and ask why Mattie wasn't as lucky?

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!