Tuesday, September 15, 2026

Tuesday, September 15, 2026 --- Mattie died 863 weeks ago today.

Tonight's picture was taken in September of 2003. Mattie was a year and half old and was given this fire engine as a gift from his paternal grandparents. Mattie loved all kinds of vehicles, so this gift made sense for Mattie. Though it was a ride-on toy, Mattie preferred pushing it himself or washing it! As a new mom, my first attempt was to lift Mattie into the seat and show him how it moved. NOT A GOOD PLAN! I learned quickly with Mattie.... he wanted to explore the world in his own way. Therefore I learned to follow his lead. When I say he was my greatest teacher, I am NOT kidding. 

Quote of the day: Just as despair can come to one only from other human beings, hope, too, can be given to one only by other human beings. ~ Elie Wiesel

This morning, my dad and I had a conference call with his neurosurgeon nurse. She has been following my dad's case since December of 2025. Last December, my dad had a brain bleed. I can't account for how this happened to him, as he did not fall on my watch and his memory care center doesn't report a fall either. My dad had no marks, scratches or bruising. Nonetheless, I brought him to the ER last year because he was slurring his speech and was more disoriented and confused than normal. They did a CT scan in the ER, and that was when we found out about the pooling of the blood in the brain. 

Since that time, we have been getting CT scans every three months, to track the blood/fluid, it the hope that it will all get reabsorbed. Today, the nurse explained that the amount of fluid pooling in the brain is the same in comparison to his May CT scan. I believe she and the doctor were hoping that more fluid would have been absorbed by now. Yet given my dad's age, she says it is not unusual for the fluid never to disappear. The goal of course is to have no falls or injuries which could cause the pooling of fluid to increase. She also mentioned that patients in their 80s and 90s, can have spontaneous bleeding, as the skull remains the same shape over time, but the brain shrinks. As it shrinks, the blood vessels in the brain can get stretched and pop, causing pooling of blood. Any case, they want my dad to have another CT scan in January of 2027. So the process continues. 

Later this morning, I called my mortgage company. NO this issue hasn't been put to bed yet! It feels like it will never end, nor will the stress of paying for this hateful process. Naturally whenever I deal with this (which is daily and for months), it makes me reflect on my hateful divorce. Any case, once I assumed the mortgage, I had to purchase a whole new home owner's insurance policy in my name. The insurer sent the policy paperwork to my mortgage company, as this yearly insurance fee gets wrapped into my escrow. Now there is a word, I despise with grand proportion. Why? Because the escrow NEVER stays the same. The only consistent thing for my escrow is it goes up in price significantly every year. 

If you are like me, you are asking, what is an escrow and what is an escrow shortage? I know I always heard these terms, but since I wasn't the financial person in my family, I didn't understand the full ramifications. But just like everything else, I have had a crash course in reality. A mortgage escrow account stores and collects your estimated property taxes and home owner's insurance from your mortgage payment each month, and pays them when they are due. This process protects both you and your mortgage lender from the risk of your taxes not being paid. An escrow shortage is when your mortgage company finds that your account balance has dropped below the required minimum cushion. This occurs only if you have an escrow account tied to your mortgage, and if local tax rates or insurance premiums go up. Homeowners who pay their own taxes and insurance premiums directly—or those whose local costs remain completely flat—never experience an escrow shortage. I would LOVE, LOVE, LOVE to have completely flat local costs. It NEVER happens! 

All I know is after this hour long call today, in which I spoke to an escrow agent and an agent from the department that oversees homeowner insurance payments, my head was spinning. Both women were lovely, but provided different information. Needless to say, I am glad I called, because the mortgage company was unaware of my new home owner's policy and this policy definitely changes my escrow and the shortage. DELIGHTFUL. So now I wait a week, to get new correspondence from the mortgage lender about my updated escrow shortage. Just like with my mortgage assumption, I was quoted a vast range of fees. So I remain on pins and needles until the exact escrow shortage amount is calculated. Seriously, the financial pressures are overwhelming and this isn't the only thing I face on a daily basis. Each way, I always say to myself.... may tomorrow be a better day. Fortunately I am not holding my breath, because if I did, I would be dead. 

Monday, September 14, 2026

Monday, September 14, 2026

Tonight's picture was taken in September of 2002. Mattie was five months old! This was a rare photo because Mattie was sitting in his high chair. I tried to slowly introduce Mattie to the chair, without the table. As the table made the chair far more confining. But I knew eventually Mattie was going to out grow his car seat, and he would need a safe place to eat! As you can see, Mattie was enjoying his introduction to peas! What a smile and precious face. 

Quote of the day: There is no greater sorrow than to recall a happy time when miserable. ~ Dante Alighieri

This morning, I had my annual skin check appointment with my dermatologist. My primary care physician recommended I start doing this six years ago. I thought she was crazy, but in my first appointment with the dermatologist she found two pre-cancerous spots. Needless to say, I was grateful my doctor encouraged me to visit a specialist and to do this yearly. My primary care doctor recommended this particular dermatologist at the time, because she was focused on the true practice of dermatology. She wasn't into cosmetic procedures and products. This is clearly where the nature of dermatology practice is going these days, which is why I was so happy to find someone focused on actual skin health. 

Now six years later, my doctor has succumbed to what all the other dermatologists in my area are doing. She can't wait to push surgery, fillers, laser treatments, and you name it. She knows not to try this on me, she learned that in our last visit together! But today, I truly wanted to counsel her to STOP! She is either doing this to herself or paying for these procedures on herself and her face now looks like a squirrel with stuffed nuts in its cheeks. She was a pretty woman to begin with, but now, her features are all changed. She has physically morphed into a different person before my eyes. I certainly understand the need for plastic surgeries for accidents, cancer, and other medical reasons. But to elect to do this to yourself, to pay out of pocket for this, makes me wonder. Where are our priorities as a society? 

After my doctor's appointment, I went to pick up prescriptions for my parents at the pharmacy and then I stopped at our local hallmark store because I wanted to pick up cards and things. As soon as I walked into the store, I asked the store employee what was going on. Around a third of the store seemed to be missing. Counters and display cases were gone. Instead, the remaining items in the store were dispersed throughout the large space. To me there were gaping holes and what immediately came to my mind was..... this store is going to go out of business. I am not sure what is happening, but clearly new products haven't made their way to the store. This saddened me, because to me, Hallmark was once the store I could find little gifts for just about anyone. Now I literally walked in and walked right back out. The feeling of the cavernous space and lack of product depressed me. The internet and on-line purchases are killing all brick and mortar stores. The newer generation loves on-line shopping and they really don't see the sensory advantage of seeing and holding items. Some how between the doctor's office and Hallmark, I came home upset, because these are visual reminders that priorities in our society have been and continue to drastically change, and NOT all change is for the better. 

Tonight, I have my quarterly Mattie Miracle board meeting. Trying to have a meeting at 6pm, is challenging, since that means dinner and everything else will be pushed back until later. There is only one of me, so I have learned I have to cut myself some slack. Of course, whenever I do Mattie Miracle work, I can't help but feel the immense loss of my family unit of three. Been doing this solo for three years, you'd think by now, I would have come to accept these changes. NOPE! Anyone who really knows me, knows I don't like change, especially such life altering emotional changes. 

Sunday, September 13, 2026

Sunday, September 13, 2026

Tonight's picture was taken in September of 2002. Mattie was five months old and loving rice cereal. You can see the joy in his eyes! Both eating and looking at me, looking at him. Mattie did not like his high chair, so instead, I used his trusty car seat. I do not know where I would have been without that car seat. As it served as a high chair and a place Mattie found cozy to sleep at night. I literally would strap him into the car seat and then place the car seat in his crib. I found that being Mattie's mom inspired me to think outside the box! 

Quote of the day: Do not look for healing at the feet of those who broke you. ~ Rupi Kaur

Look at this beautiful sunflower gift I received in the mail! These are three real sunflowers that have been sealed inside this glass block. The block also lights up. I can't think of a better gift in honor of Mattie's 17th anniversary of his death. Once I became a mom, my perspective changed, and I always thought of life in terms of three... me, my other half, and our beautiful boy. So three is a magic number for me, as it symbolizes the way my family used to be, and in a way, the family that always remains alive in my heart. These sunflowers will light my nights on the darker fall and winter days that are fast approaching. 

The giver of this meaningful gift is my dear friend Cheryl. I have never met Cheryl, but she was related to me through my marriage. So in all reality, she is my cousin Cheryl. She has been a beacon of light for me during my entire separation and divorce. I don't say this lightly as there were very dark emotional times for me, and the notion of jumping out the window sounded like a great idea. But Cheryl would text me thoughts, feelings, and compassion and her words would be absorbed and I would find a way to the next day, and then the next day after that. She has been an emotional lifesaver and the sunflowers are so symbolic of Team Mattie and that incredible love, support, and strength that rallied around my Mattie and me during his cancer journey. 

I took my parents out for lunch today, just like I do every Sunday. While driving to the restaurant, my dad had an irritable bowel syndrome accident. This is nothing new, as this happens every Sunday like clock work. Which means once I get to the restaurant, I have to lay by and take my parents inside, and immediately take my dad to the bathroom and change him. Then I go back out and park the car. I am not doing the experience justice, as it is extremely stressful juggling this alone. While at lunch, out came the game, Qwirkle. Playing the game is the only thing that keeps my parents focused, otherwise, my dad is in a fog and my mom is glued to her phone. I have noticed now three weeks in a row, that when we go out to eat, my mom gets in a funk. She seems unable to eat, she reports having an upset stomach, and truly I do not know who to worry about first at the table. 

Given that we have been going to this restaurant since 2021, we know a good chunk of the servers and managers. So it is not unusual for people to come up to us and start chatting, not unlike today at least four people stopped by and we caught up with each other. In the process, I introduced Qwirkle to each of them and our server loved it so much that she was playing along too.

Saturday, September 12, 2026

Saturday, September 12, 2026

Tonight's picture was taken in September of 2002. Mattie was five months old. I was gifted this "tummy time" playset. This was a position Mattie absolutely HATED! In theory tummy time is important to help develop neck and upper body muscles. Despite that, I could only put Mattie in this position for about five minutes at a time, as he would get very upset. I believe Mattie disliked this position because it prevented him from moving about and it limited his freedom!

Quote of the day: Have you ever lost someone you love and wanted one more conversation, one more chance to make up for the time when you thought they would be here forever? If so, then you know you can go your whole life collecting days, and none will outweigh the one you wish you had back. ~ Mitch Albom

It was another hard morning, of multiple irritable bowel issues, starting in the shower. By the time I got my dad showered, dressed, and downstairs, I literally had already put in a full day! My dad's physical therapist came over today and she got him to do a walking routine outside. My dad really did not want to go outside, but we encouraged him to get fresh air. Soon it will be too cool for him to do this, so I strongly believe you have to capture these outdoor moments when you can. 

As it is September, I realized this weekend that I had to start crafting the Foundation newsletter. I used to do a newsletter 12 months a year. Then a few years ago, I took August off. Since my separation, I now do not write in July or August. So ramping back up in September is hard, as all the visuals and content come from me. At some point today, the notion of living life without my other half flooded my mind and then it clouded my energy to write a newsletter. After all, we started this Foundation together, and it truly helped to have someone to bounce ideas off of and to brainstorm content and goals. I always felt we were better together. 

Naturally, I had to get a reality check and stop this irrational thinking, otherwise I wouldn't be able to focus and do my best work for Mattie Miracle. So after the physical therapist left today, my parents rested for 90 minutes, and I had uninterrupted time to start figuring out what I wanted to highlight in the upcoming newsletter. As of this evening, the newsletter is well underway and will continue working on it tomorrow.

This afternoon, I took my parents to our local diner. Something we do every Saturday. Since I am typically cooking and cleaning, I appreciate going out a few times a week to break up the work and to have conversations with outsiders. The diner was an absolute zoo today. They had a celebration of life event in one of their rooms and the noise level in the whole restaurant was out of control. You know the kind of intense noise that starts drilling through your head? So between the noise and the whole kitchen staff working on overload, it was a horrible dining experience. Some food came out cold, and some things we ordered never came out at all! I did land up paying the bill, but then I snapped. I called over our server (who we work with every Saturday) and I explained to him that this whole meal should be comped because we are regulars and today's experience was intolerable. Needless to say, the bill was comped. But comped bill or not, my mom came home feeling nauseous and I still feel hungry. 

As I am still watching and processing the 25th anniversary of 9/11. I saw this video clip last night on TV. I never heard this song before, but it resonated with me. Anyone who has been traumatized and isn't sure how to make it through another day, this song illustrates to us.... there is always hope. 

Friday, September 11, 2026

Friday, September 11, 2026

Tonight's picture was taken at the end of September of 2001. The point of this photo at the time was to capture my pregnancy. I was two months pregnant with Mattie and it was an exciting and yet very scary time. The pending notion of being a new mom can be frightening as it is a huge responsibility, but I was also pregnant during 9/11. In fact, on September 11, 2001, I was supposed to have my first obstetrician visit. Of course that never happened, because it was the day the world stopped turning as our Country and region was under attack. This morning my 'former' mother-in-law wrote to me and asked.... where was I on 9/11 when I learned about the towers being struck? I explained to her that I was pregnant, at home, and was watching the horror on TV. While I was home, my other half was at work in the neighboring state of Virginia. People were fleeing the city and he was desperately trying to get back in to me. It is hard to believe this nightmare happened 25 years ago. It is a tragedy that destroyed families, that severely impacted the health of those who survived, and the threat of our safety remains ever present. May we never forget the thousands of people who died on that day and the incredible heroism of the first responders who worked around the clock to search, rescue, and recover victims.  

Quote of the day: It’s the nature of the world that most people have moved on, but the people directly involved with 9/11, for them, twice a day it’s 9/11. ~ Robert Reeg, former FDNY firefighter

It was another difficult day with my dad and his irritable bowel issues. Fortunately after five rounds of clean up, he was able to go to his memory care program, so I could regroup. Regrouping doesn't mean resting.... it means grocery shopping, laundry, and other chores. Given that I know it is 9/11, I feel the depths of the sadness of the day, as I know how traumatic it is to lose a loved one. With time everyone forgets and moves along, but for the bereaved, time doesn't heal all wounds and we never forget. 

Later this afternoon, I took myself outside to the backyard to do more weeding. I find that being outside is the only thing that helps my sadness and anxiety. 

How do you like this huge germanium? I bought this plant in the spring of 2005. It was very small when I purchased it. It grew so well that I winterized it inside the house. I brought it back outside this spring. Can you see on the very top of the plant is a red blossom. Talk about the strength of plants to grow up and toward the sun. 

I absolutely love Mandevillas. They are hearty and can handle our extreme summer heat. They also attract hummingbirds and butterflies!!! So I have many of them around my house. 

This is the first summer that this hibiscus is blooming. I have grown to love this plant and when it starts getting cooler this fall, it will be coming inside for the winter. 

I have four large planters in the backyard. My other half purchased them and planted roses in them. I keep the tradition going!

This is one of my Sunny hibiscuses. I bought them in 2024, the year that Sunny died. They are my tribute to my beautiful Australian Shepherd. I literally transplant them into plastic pots in the Fall and carry the plastic pots into the house. In the spring, I plant them back into the ceramic pots. I have no idea how I haven't killed them yet, but they are survivors, and I love them! 

This photo was taken in June of 2014. Hard to believe this was 12 years ago. We went to the Outer Banks of North Carolina for a week. During our trip, we visited the Elizabethan Gardens. A place we took Mattie and my former in-laws many times. We all loved this amazing botanical garden. During that visit in 2014, we bought a small plant in the gift shop that was featured in the garden.... a butterfly ginger lily!

This is the butterfly ginger lily! When it blooms, the flowers are incredible fragrant and in the shape of a white butterfly. Last summer, I brought the plant outside, but did not put it in direct sunlight. When I winterized it inside, the plant looked like it was dying. This spring, I carried it outside and put the pot in direct sunlight. Ginger Lily is happy and thriving. As crazy as it sounds, this plant is a reminder of my marriage and the bond we shared together, so the notion of it dying, was very upsetting. 

Thursday, September 10, 2026

Thursday, September 10, 2026

Tonight's picture was taken in August of 2009. Mattie's pool was on the deck, but unlike previous summers, Mattie couldn't go in it. He had a Broviac catheter which was a central venous catheter used for long-term delivery of fluids, medications, or blood products. We avoided getting the catheter wet, to avoid infection. Instead, Mattie decide to pilot his remote controlled motor boat.... it was Captain Mattie at his best!

Quote of the day: But I guess death is like that. It takes away from you in an instant the people you've cherished for a whole lifetime. Just like that. As simple as that. And you are suddenly left with two things: anger for having been deprived of your beloved for no reason at all; and emptiness, a vacuum that gnaws right at your heart where all the joyful moments once had been. ~ Jocelyn Soriano

Last night, we received this wonderful board game from my dear friend, Cheryl. I call her my friend, but technically we were once related through my marriage. Cheryl has been on my Mattie journey with me from day one and has read my thoughts, words, feelings, and ups and downs for 18 years. Cheryl introduced us to Blokus! I have to admit, I was never a board game player as a kid. I am not sure why but I think as a child games made me anxious. I was always afraid of not being able to understand how to play or to look inferior to other players. Now at this point in my life, I am completely different. I have survived so much, and have found a way through, that if I don't understand something, I take a deep breath and find a way through. Just like Cheryl mentioned, Blokus is easy to understand and play. In actuality, it is very strategic. As you have to creatively place pieces on the board, so that they touch by their corners. I can imagine the more I play the game, the more I will be able to figure out how to place as many of my colored pieces on the board. Any case, we played a round after dinner last night. My mom was red, my dad was blue and I was yellow. I played my pieces and also worked with my dad on his pieces. I am truly finding that games keep them both engaged and focused and it gives us something productive to do together!

It was a busy day with both of my parents having a physical therapy session, I completed a ton of chores, and I took my parents out to lunch. We visit the same restaurant every Thursday. I know most of the servers there and each week they fill me in on their lives. Today, one of the servers pulled up a chair and sat with us for ten minutes, as we listened about his landlord issues. Then another server came up to us and told us that seeing us brightens up his day, as we are always so kindness and thoughtful. I may not have my usual social circle, but I have developed a bunch of connections with lovely hard working people who try to make my parent's visits comfortable and happy.

I opened my mailbox today and received this beautiful heartfelt card and pop up flowers from Children's Hospital at Sinai. Mattie Miracle works closely with this hospital in Baltimore. This meaningful tribute was in honor of Mattie's 17th anniversary of his death this week. 

At around 5pm, I went outside to the front yard and massively trimmed all the bushes in this island. Every bush was out of control and growing into the other. I got out the hedge trimmer and shaped everything and cleaned up debris. I know it is hard to believe, but this took me two hours. I should have taken a before photo, but trust me, things were overgrown. Can you see the bigger bush with purple flowers on the right? This is a butterfly bush. We planted this entire island when we moved into the house. Given my love of all things butterfly, I was thrilled that we planted a butterfly bush. Throughout the spring and summer, this bush is alive with flutterbys! 

Wednesday, September 9, 2026

Wednesday, September 9, 2026

Tonight's picture was taken in August of 2009. This was Mattie with Speedy Red. Mattie wanted a ride-on vehicle for years, as one of our neighbor's had one! However, when Mattie was well, I felt that this was not a realistic purchase! First it was expensive, second, we had no where to store it and third and most importantly, I felt this would be a short lived interest! However, cancer changed my perspective. This gift was Mattie's last wish and therefore we were going to make it happen. Mattie was my "little engineer." He took to driving like a duck to water. He had an intuitive understanding for a gas pedal and brake! Speedy Red brought Mattie happiness, and I will never forget him driving around in our commons area. 

Quote of the day: The loss of a sweet and beloved child is a sorrow of which none but those who have suffered can have the least realizing sense; it is unlike that of any other relation; it is not like the tearing off simply of a limb, but unwinding and breaking to pieces the little tendrils that have grown around the heart and become part of one's self. It is the opening of all the feelings, and pouring sorrow in at every pore. ~ Nathaniel R. Stimson

I will never forget September 8, 2009, the day Mattie died. Obviously for many reasons, as it is the day in which my world stopped. Not unlike yesterday's weather, the day that Mattie died was a glorious sunny and non-humid day. It was like the perfect day, and others outside the hospital were moving about as if it was just a regular day. Business as usual for them! I remember NOT getting it! How could my world be totally overhauled and decimated? How could the death of my 7-year-old not be consequential for everyone else around me? Yet that was the reality, which it took me years to come to terms with! A week prior to to Mattie's death we were admitted to the hospital. We entered the hospital as a family of 3, and then left as a family of 2. Now of course, my life has gone from 3, to 2, to 1! 

Yesterday and today, involved two visits to the hospital. My dad had to do a follow up brain CT scan yesterday and my mom needed a bone density shot today. So it was a lot of running back and forth to the hospital. The hospital where Mattie was born and diagnosed. I can still picture us leaving the hospital and taking a photo by a tree near the entrance, before putting Mattie in the car to held home. How can that tree still exist, but Mattie and my marriage, don't? 

Any case, I was very lucky to be working with outstanding radiology techs yesterday. It took three men to help me get my dad onto a CT scanning table. They were amazing! Kindness and compassion, really make hard situations so much better. Today, while heading to the doctor's office, a young mother with her baby got on the elevator with us. I could have remained quiet, but I didn't! I asked her how old the baby was (2 weeks) and literally out of my mouth, I said..... "how is the baby and how are you doing?" When I tell you this mom was happy I asked about her, I am not kidding. She said, "well you know!" Meaning, she viewed me as a mom. I said, "YES I know, which is why I am asking." She felt overwhelmed and tired. My response to her was she got to the hospital, both of them were dressed, and this is an amazing first step. I told her the only way to manage this incredible responsibility is to take it one day at a time, and that it is okay to ask for support from those in her life. She thanked me for caring, for listening, and for understanding. 

It is moments like these that remind me..... yes I was a mom, yes I understand how overwhelmed this new mom felt, and NO I could never have gained this experience without my Mattie! Mattie's life and legacy live on in all my interactions with parents, in all my Foundation work, and of course through the blog and all of you. 

Tuesday, September 8, 2026

Tuesday, September 8, 2026 -- Mattie died 862 weeks ago today. 

It is the 17th anniversary of Mattie's death. 

Tonight's picture was taken on September 1, 2009. As you can see, Mattie was very ill. He was attached to a pain pump and most times was connected to oxygen. It was Mattie who elected to return to the hospital. He did not want to be at home. So in essence Mattie chose to die at the hospital, surrounded by his hospital family. However, I really think Mattie chose to die at the hospital because he was worried about us. All I can say is thank goodness Mattie made this choice. There would have been no way Mattie could have humanly died at home. The amount of pain meds given to Mattie on the day he died were basically adult dosages and eventually the medical team gave Mattie a lethal dosage of propofol to send him into a coma. Mattie died in my arms, with me hearing that flat line sound on his machines. I will never forget that harrowing six hours of his death, the syringes of pain medications all over his bed, and Mattie struggling to breathe. 

Quote of the day: How does it feel, to see a dying child? One does not feel at all for there is nothing in the mind to make sense of it. Nothing, but one's own death. ~ A.J.West

Today marks the 17th anniversary of Mattie's death. Some may be reading this and saying, 17 years ago is a long time. Therefore the loss is less painful and Vicki has found a way to move forward. Case in point, the comment I recently received on the blog, basically told me just that.... "Get the f* up. Your son died years ago. He left you most likely for this." 

I can't speak for other bereaved parents, I only speak for myself, and for me, Mattie's death will always be earth shattering. Certainly, I have had to find a way to stabilize and live with this pain, but that doesn't mean for one second that I have forgotten the pain, I have forgotten Mattie's journey, and that there is no longer a need to retell stories, share his life with others, and find ways to honor Mattie's memory. Anyone who knows me, knows that connections I share with those I love are very deep. 

This morning when I woke up, I was a bit dazed. I was dazed because I did not know if a butterfly encounter actually happened or if it was part of my dream. I determined it was my dream, but the feeling was so real. All I remember before coming to consciousness was that a big butterfly was flying all around me, and then it suddenly landed on my cheek and was fluttering. Not unlike how Mattie would flutter his eyelashes against my face! I concluded that this dream was a Mattie sign, as I typically don't remember my dreams, but this one was very vivid! 

This photo was taken on September 8, 2017. Sunny came with me to the hospital to visit Mattie's paver! This paver was a gift to us from our philanthropy contact at the hospital. It reads...

In Loving Memory of our Son, Mattie Brown

This photo was taken on September 8, 2016. This brick paver is in the garden outside the church where Mattie's funeral was held. One of the families from Mattie's preschool created this for us. The paver reads....

In loving memory, Mattie Brown, King of the Legos.

Sunny with me in the church garden. Here's the thing about Sunny. He never met Mattie, yet he understood we were doing something special and important. Meaning he just knew he wasn't there to sniff, run, or play.

I was going to reflect on Mattie's last moments here, but then I figured why should I recall it, when I did such a thorough job back in 2009. Which was actually amazing given the horror I had just literally experienced! So below is an excerpt from the September 8, 2009 blog posting. 

Blog Posting from September 8, 2009 (I added notes in parentheses):

Mattie had a VERY harrowing night. From 2am on, Mattie was having trouble breathing, and appeared to be in intense pain. It was the most intense five hours of our lives, and the sights and sounds we observed during this time were horrific, ones I don't wish on anyone else. I can still see Mattie's sweet face writhing in pain, gasping for breath, and making a horrible congested sound, which if I don't ever hear this again in my lifetime, that would be too soon! Dr. Shad called this chest congestion, the "Death Rattle." That is an accurate description because when you hear it, you know death is pending. In all reality I found these five hours frightening, because we just did not know how the death process would unfold.

We were blessed to have Sarah Marshall, one of Mattie's outstanding HEM/ONC nurses, working with us last night. Sarah Marshall was assigned to work with Mattie only last night. Typically a HEM/ONC nurse is assigned three patients during a given shift. Sarah Marshall was proactive and did everything that was humanly possible to make sure that Mattie was relatively pain free, which WASN'T easy. Mattie was on IV dilaudid, dilaudid boluses by hand, a Versed continuous drip, as well as boluses of Versed. In addition, Mattie was receiving albuterol through an inhaler, which helped to keep his airways open.

X (I removed the name) and I spoke to Mattie throughout the night. We weren't sure exactly what to say, but we told him we loved him, were proud of him, and in essence he could die and we would be fine. We wanted him to know we understood he was in control over how the night played out.

By 6:15am, Mattie was receiving very high dosages of pain medicine, however his pain wasn't subsiding, and frankly we were getting concerned with how we could manage his very over taxed heart and body. Dr. Shad prescribed propofol at that point to put Mattie in a twilight sleep. But propofol is known to slow down the heart rate, and this assisted in giving Mattie relief and helped to stop prolong the agony! Mattie died within one hour of the propofol infusion. While Mattie was in pain, I could see he would try to sit up and talk with X and I. At one point, he mentioned to us that "he was going to die." So we concurred with him and this provided some leeway to talk about our fears and hopes for him. We told him we loved him and that it was okay to let go. Periodically Mattie would sit up and try to open his eyes, and one time he looked at me and said someone else was in the room with us, by the door. Well no one earthly was in the room with us, but we knew Mattie's death was near. Here is the thing though, seeing him suffer in pain, and listening to this "death rattle" for hours on end, made the option of death much more peaceful and appealing. My heart was aching over the pain Mattie was in. Dr. Shad assures me that Mattie was always comfortable, and the "death rattle" is much harder for the caregiver to listen to for hours.

As Dr. Shad said to me today, "Mattie fought death." Mattie just did not want to die. Dr. Shad feels that this was because he did not want to leave X and I behind. After all the three of us thought we would be together for always. Careful when you assume things!!! Dr. Shad told me that she has been an oncologist for 25 years and in all her career she has only had to use propofol on one other child patient! She said Mattie was her second, and Mattie needed it because he was resisting death. I actually found her statement very empowering, because if Mattie was willing to be that congested for such a significant period of time then he really must love us dearly.

Once on propofol, Mattie's body started to relax, and I decided to lie down next to him on his bed, as we were awaiting death. I wasn't sure what death was going to look like, but slowly one by one his respiratory rate went to zero, his pulse oximeter went to zero, and his heart rate also went to zero. Hearing all these values flat line was another sound I won't forget any time soon. But by that point Mattie was in my arms. The nurses and doctors gave us about an hour alone with Mattie after he died, to say good-bye. This was a very touching and tearful hour. How do you say good-bye to your child? Both X and I know on some level that Mattie has died today, but on the other hand, we are having intense trouble believing this. 

Sharon, the Lombardi Clinic chaplain, was with us starting at 4am. She helped say a prayer before and after Mattie's death. Sharon did a wonderful job, and though I have my own issues I am working out with God, I saw the need for prayer and to ask God to spare Mattie more pain and suffering. (Current note.... Having Sharon in the room with us for hours while Mattie was dying was very uncomfortable, as it made me feel observed and judged at the most painful time in my life as a mom.)

After we had some private time with Mattie, he was visited by over 20 Georgetown Hospital employees. Jenny, Jessie (art therapists), and Linda (child life professional) bought four stepping stone kits and we all worked around Mattie and did a stone for each foot and each hand. This is something I always wanted to do, and I am happy to have these cherished gifts that will always remind me of Mattie. I appreciate Tricia, Debbi, and Katie's (nurses) help, because as X and I were pushing Mattie's hands and feet into the cement like substance, they were cleaning the substance off of Mattie. It was an amazing experience that occurred today, because in Mattie's postage stamp sized room, many employees came by to share their fond stories of Mattie with us. It was touching to see and hear how much Mattie has touched people's lives. My parents were so happy to be able to meet in person many of the people I have been writing about on the blog. In addition, Brandon, Mattie's big buddy, also visited. I could tell that Brandon was very upset to lose Mattie, and I told Brandon that Mattie loved him and considered him a good friend. (Current note.......... Another thing I did not report at the time, was Mattie's original oncologist came to visit us. When my dad asked him in this group setting of 20 people (like a mini wake in Mattie's room), what the doctor learned from Mattie's cancer case, the doctor said.... NOTHING! This is something that I will never forget. Even if he learned nothing,  you don't say this around a bereaved family!)

Once all the visits were over, X and I had the last chance to say good-bye to Mattie before preparing him to go to the hospital morgue. Lovely, no?! Saying good-bye to that beautiful face, those cute cheeks and hands was down right impossible. There are times the true reality hits me and I don't know how we will go on. Literally!

Tricia, Debbi, and Katie (nurses) then gave Mattie a bath, and as unpleasant as this sounds, they had to place Mattie's body in a body bag and transport him to another floor in the hospital. I removed myself from the room, because I did not want to see the body bag. My precious son landing up in a body bag was a little hard to take. I sat outside with Dr. Shad and Linda, and X remained to help with the process. Mattie's "big brother" Jey (part of the transport radiology team, who became very close to Mattie over those 14 months) came up to see us and also stayed to help transport Mattie to the morgue. He said no one else could do it, it was his responsibility today, because he loves Mattie and wants to give him a safe drive on is final destination within the hospital.

Saying good-bye to Georgetown today made me sad. I know we are always invited to the C52 unit, but it isn't the same. The nurses were clearly affected by Mattie's death and in many ways I was surrounded by this amazing community that we have gotten to know over 14 months of hospitalization. Jey also told us a funny story. Jey could picture Mattie up in heaven and arguing with God about his wings. Jey said Mattie would WIN about how large they would be!

We arrived at the hospital last Thursday with three of us, but today we only came home with two. How I miss the noise, sights, and directions given by Mattie, instead what I have floating around in my head are the sounds of hospital monitors. When we arrived home, I saw Speedy Red and almost lost it. In all reality being around Mattie's things bring about great sadness.

Monday, September 7, 2026

Monday, September 7, 2026

Tonight's picture was taken in September of 2008. It is one of my favorite cancer related photos I took of Mattie. That day, one of my wonderful students came to visit. Susan is now my friend! Any case, Susan, introduced Mattie to an archeological dig. She brought this big block of clay with her, tools, and goggles. Mattie worked on digging through that block of clay for maybe two hours. He unearthed this plastic skeleton of a dinosaur. Once the process was over, Mattie was tired, but very proud of his accomplishment. This photo captures the emotion of that moment! I will never forget that day. 

Quote of the day: Emotional pain is not something that should be hidden away and never spoken about. There is truth in your pain, there is growth in your pain, but only if it’s first brought out into the open. ~ Steven Aitchison

Though it was a holiday, my mom got up early. As soon as she starts moving and opening and closing doors, I am jolted awake. Of course, Indie doesn't like me sleeping past 7am either. Any case, I got up early and started my day. However, as the morning continued on, I literally felt sick to my stomach. I wasn't sure how to manage this feeling, but thankfully as quickly as the feeling came on, it dissipated. My parents were very tired today, so after breakfast, I encouraged them to rest in the family room for two hours. 

I eventually took my parents to Dairy Queen for blizzards. Dairy Queen is a special place to me, because me and my other half would always visit one of their stores in North Carolina, during our beach vacations. I remember eating a blizzard one year in the car, while a massive rain, thunder, and lightning storm was all around us. Before going to the Outer Banks, NC, I never heard of Dairy Queen. Our vacations opened up a new world to me because I LOVE ice cream.

I did not go to the Dairy Queen empty handed. I brought the Qwirkle game (which I talked about yesterday) with me. It is now stored in the travel tote I always have with me. I love the fact that the game gets both of my parents to focus, use their brains, and talk to each other. Since they both enjoy this type of game, I will be contacting my dad's memory care center to find additional game ideas. 

On Tuesday, we head to the hospital for my dad's follow up CT scan of his head. My dad suffered a brain bleed in December of 2025. He was hospitalized then and we have been working with a neurosurgery team for almost a year now. The team has my dad doing scans every three months. I am hoping this will be the last scan, because getting my dad on a CT scan table is like hell on earth. 

Tomorrow also marks the 17th anniversary of Mattie's death. The hospital where I am taking my dad for his scan is the same hospital where Mattie was born and where his cancer was first diagnosed. In a way, it is like returning to a place of great significance to my life, a place that provided great happiness and also unbelievable sadness. 

Sunday, September 6, 2026

Sunday, September 6, 2026

Tonight's picture was taken in September of 2008. As you can see, it was a month into treatment and Mattie lost all of his hair. This was a big adjustment for Mattie and it made him immediately see how different he was from his friends. There was no mistaking that Mattie was sick and fighting cancer! That afternoon, our neighbor, Francis, came over and bestowed Dandy Dog on Mattie. Dandy Dog was practically Mattie's size. Francis had the dog made especially for Mattie. Mattie couldn't get over this large stuffed animal. Every gift of kindness Mattie received over those 14 months, perked him up. You would be amazed how his mood and outlook would change when he received a care package from someone. All I know is I will always be grateful to the generosity of Team Mattie, because anything that brought Mattie happiness even for a minutes, was a blessing. 

Quote of the day: Feeling gratitude and not expressing it is like wrapping a present and not giving it. ~ William Arthur Ward

When I finally got my dad settled in his recliner this morning, after our morning routine, he surprised me. He literally looked at me and said, "You know what?" Seriously I had no idea what was coming next. I figured he was going to tell me what he needed, but that is not what happened. Instead, he said, "I am proud of you!" I was stunned, but given how I am feeling about myself these days, my response to my dad was, "why are you proud of me?" My dad said, "I am proud of you because you are a very special, thoughtful, and incredibly bright woman." I truly wasn't expecting this comment. Most days, I plug along without a word of kindness or thanks. I am not caregiving to get thanks, but what I found was after hearing this today, I felt a little lighter and in a better mood. 

This afternoon, I took my parents out to lunch, like I do every Sunday. With me, I brought the game, Qwirkle. How did I find out about this game? From my dad! My dad has been talking non-stop about this game, which he saw at his memory care center. Here's the irony of this! He did not play the game at the center, nor did he see anyone else play it! Nonetheless, the game caught his eye on the shelf. So much so, that his caregivers there wrote down the name of the game for me! One day last week, my dad wanted to take the game from the center, bring it home, and keep it. Of course I had to explain that the game belonged to the center. Normally my dad wants something, but then forgets about it minutes later. Not with this game! He was insistent. So the other day, I bought it. 

I packed up the game and brought it to the restaurant with us. It is a very easy game to transport and I read the instructions before today, so I had some idea how to play the game. My parents can no longer play a hand themselves, so instead, I dealt out six tiles each and we all could see each other's tiles. We then worked on creating patterns with shapes and colors together. It actually was a great activity that engaged both of my parents. Usually my mom is glued to Facebook while we are dining and my dad is out of it, which leaves me trying my best to engage them. Qwirkle did the trick today. Another table was fascinated by what we were doing that they came over and snapped a photo of the game. 

Here's the take away from all of this..... my parents may not be able to play the game exactly as intended, but they can still play the game. It takes more guidance and support from me, but as I always say.... you go with where a person is and you find a way to engage them at their developmental level! 

It made for a very engaging lunch and I am happy I insisted on taking the game with us to the restaurant. My dad wanted me to purchase the game but initially he did not want to play it. He got confused by all the tiles and couldn't understand the goal of the game. So playing as a group of three rather than three individuals made it a very successful first round of Qwirkle!