Tuesday, September 16, 2025

Tuesday, September 16, 2025 -- Mattie died 812 weeks ago today.

Tonight's picture was taken in September of 2005. Mattie was three years old and that weekend we took him peach picking. This was my first time ever peach picking too! As I always would say, Mattie opened up a whole new world for me. I can't tell you how many peaches we picked that day! They were glorious! We brought them home and I made all sorts of things like jams, breads, and muffins. Don't you just love Mattie's smile? He loved being outside, exploring nature, and through him I learned to appreciate the world around me. 

Quote of the day: We all want to do something to mitigate the pain of loss or to turn grief into something positive, to find a silver lining in the clouds. But I believe there is real value in just standing there, being still, being sad. ~ John Green

This afternoon, I took my parents for flu shots. This is a shot that always makes me nervous, because I am afraid of getting flu like symptoms from the vaccine. This used to happen to me in the past which was why I avoided this vaccine at all costs. Since my parents moved in and I care for them full-time, I have elected to get the flu shot each year. I truly can't afford to get sick. Because if I don't function, then my house would come to a standstill. The fellow who gave us the shot today was lovely and very kind to each of my parents. 

While waiting to get the vaccine, there was an older couple in the process of getting jabbed with the flu shot. They were doing this together and they were so supportive of each other. As I always say, things are better when you have a significant other to lean on. After the woman got her shot, he then helped her up from the chair and told her.... it's time to go for ice cream! What a guy!!! That notion brought a big smile to her face. It was a touching sight to observe, because truly it is the simple things in life, I have found that matter the most.  

Once we all received the vaccine, I took my parents for frozen yogurt. It is much harder now taking my parents anywhere, because I have to help my mom out of the car as she needs to hold my arm to get from place to place. Which means I first address and assist her and then go back to the car to get my dad up and out. While helping my mom to the store, a young man came running over to help me. He literally held the door open for my mom and escorted her in, while I went back to the car to get my dad. I thanked this fellow and he smiled, as if it was to say.... no problem. His act of kindness has remained with me all day, mainly because I am used to managing all of this myself. But here a complete stranger could see that I needed an extra hand and somehow that changed my outlook about the day. Anyone who thinks they can't make a difference in this world, would be wrong, as I believe a kind act is like throwing a pebble in water. The ripple effect, though subtle, translates down to everyone in its path. 

Later this evening, while making dinner, we lost power three or four times. Thankfully we have a generator, but even with the generator, not everything works in the house and frankly I can't remember what is on the generator and what is not. So when certain things in the kitchen weren't working, I freaked out! Yet my freaking out accomplishes nothing, because there is no one in the house who is able to help me figure it out and manage the issue. Of course while trying to why certain sockets in the kitchen weren't working, my mom was asking me a thousand times what was happening to the power and better yet what was happening to the TV. It is in these moments I get frazzled. It is in these moments where I feel very fragile and vulnerable, and miss the way my life used to be. 

Any case, I was so strung out about the electrical issues, that I text messaged Bob, my electrician. He and my plumber understand that I balancing way too much on my own, and therefore, when I contact them, they get back to me immediately. So today, I am thankful for the kind fellow who gave us our vaccines, the wonderful man who lent me a hand with my mom, and for Bob. It makes all the difference in the world knowing that when things go wrong in this house, WHICH THEY DO CONSTANTLY, that I have professionals who go the extra mile to support me. 

Monday, September 15, 2025

Monday, September 15, 2025

Tonight's picture was taken in August of 2007. That week my parents and I took Mattie to San Diego. We were staying on the island of Coronado. Outside the hotel was this fountain filled with swans and flamingoes. Mattie just loved visiting this fountain. When we got up to the fountain, I asked Mattie to give me his impression of a flamingo! So this was 'Mattie the Flamingo' in action!

Quote of the day: The grief within me has its own heartbeat. It has its own life, its own song. Part of me wants to resist the rhythms of my grief, yet as I surrender to the song, I learn to listen deep within myself. ~ Alan Wolfelt

I got up at 5am this morning. I needed to do this in order to do my usual morning routine and then work with the fellow who was coming over at 8am to fix my doorbell. As I told him, you never know how important a doorbell is until you don't have one! If you have been following along on this blog, then you know that nothing I have experienced so far has gone smoothly or easily. I was really hoping that I would get the doorbell and camera replaced and then things would go back to normal within an hour! Of course not! No matter what we tried, we couldn't get this camera to work or pair with my phone. So he concluded I needed a whole new device. FINALLY! I have been saying this for over a week. As he was trying to install the new device, he stopped and then said he couldn't! That we have a problem! OF COURSE WE DO! I am getting used to this reality.

So what was the problem? Well apparently new doorbell devices need a voltage of 16-24 volts. However, my doorbell transformer provided only 13 volts. While he was telling me this, I was thinking..... I do not care about hearing about voltage, I just want this thing fixed. He then explained to me that I needed to hire an electrician, because this kind of wiring he DOES NOT do! Again, my reaction to myself was..... OF COURSE, why should this be easy!? Then he said to me that it is hard to get electricians now, and it could take me up to two weeks! I literally looked at him! My response was.... I don't think so! Literally while saying this, I called Bob, my electrician. I have been working with Bob since 2021, when we moved into this house. I can't tell you the extensive work Bob had to do on this house... try rewiring the whole thing. My joke back in 2021, was I saw Bob more frequently than my friends and family. 

Any case, the doorbell fellow was just observing what I was doing. Bob didn't pick up when I called, so I then text messaged him. Within two seconds, he told me he has a transformer on his truck and could be to me within three hours! When I told the doorbell fellow this, he was stunned and don't you know it, I wasn't having him leave today, without scheduling another visit to my home THIS WEEK. Which means another 5am wake up. 

Bob came over at 1pm. Bob is an extraordinary electrician and a wonderful family man. He shared photos of his granddaughter and I got the update on the family! Then Bob and I went on a fishing expedition... looking for the old doorbell transformer in the house! Guess what? WE COULDN'T find it. I literally can't make this stuff up! Bob had to get out a gadget that he attached to the doorbell wires and then this device allowed him to find the transformer within the ceilings of the house. You heard me, the transformer was sealed by drywall in the ceiling! Which is actually illegal (as I have learned) because all transformers are required to have a means of access. Truly you had to see us, scanning the basement ceiling! This device beeped in various locations and truthfully with any other electrician, I am sure my ceiling would have looked like Swiss cheese... filled with holes while looking for the elusive transformer. But not with Bob. He worked at it for 90 minutes and then figured it out. The transformer was in one of the closets in the basement. This closet at one time must have been unfinished. It was then finished by the previous owner, and the transformer was sealed over in the process. 

When I look at my existence, I can't tell you how grateful I am to be able to turn to all the amazing men who help me run this house. In turn, I try to think of them too, in various ways, such as I always give them snacks and treats! In fact, I know which treats each of them likes, and I always have them on hand. So as of tonight, I have a doorbell transformer and an intact basement ceiling. That is today's blessing. 

As frazzled as today was, dinner was even more challenging. As my dad eats way too fast and then had trouble swallowing, got the hiccups, and was aspirating up food (which meant food got into his lungs). Alzheimer's is a disease that tests my patience, fortitude, and daily existence. In these dark moments, all I can say is...... GOD GIVE ME STRENGTH. 

Sunday, September 14, 2025

Sunday, September 14, 2025

Tonight's picture was taken in September of 2007. Mattie went out often on the Potomac River and was learning how to fish. That weekend, I was invited along! As you can see Mattie caught a catfish and was very proud of his prize. We snapped this photo and then back in the water the catfish went. We always loved the catfish because they look like they have whiskers like Patches, our calico cat! Don't you just love Mattie's smile? To me it is haunting, and it remains forever etched in my mind. 

Quote of the day: Just as it is impossible to explain childbirth to a woman who has never given birth, it is impossible to explain child loss to a person who has never lost a child. ~ Lynda Cheldelin Fell

Everyday it is something, today was no different. Because I never maintained the household finances during my marriage, I have had a very steep learning curve over the last two years. This morning, I woke up to a message in my email about the escrow attached to my mortgage. I knew this was coming, as I made a note last year in my Sept/Oct spreadsheet that an adjustment to the escrow takes place in the Fall. I assure you when I got that first message in 2024, I was dazed and confused. Now I know an escrow covers the home owners insurance and taxes. Both of which seem to go UP and UP every year. Given what the adjustment was last year, I figured the amount would be in the same ballpark this year! Unfortunately it was not! It doubled. Truly at 8am, I went into a thorough panic. When this happens, I internally freak out. I say internally, because there is no one in my home who is capable of helping with these big decisions! Then just like everything else, I put that fear and anxiety somewhere, and mobilize into action by adding these amounts to my spreadsheet and taking a deep breath. There is one certainty and given to any of my days and that is.... crisis. Everyday there is something, and I am so so tired of it all. I am tired of managing everything in life alone. My lens was always as a twosome, and it is an enormous loss to me on a very deep level. 

After this morning's escrow surprise, I then went out to examine the pool! Sure enough it lost another 1/2 an inch of water. I am once again measuring the water loss each day with painter's tape (with the date labeled on it). In addition, the pool has a fountain feature. I grabbed my phone to shut that feature off through the app. I am trying to address one issue at a time, to determine where the problem is coming from to explain the leak. I know the leak company found no external leaks in the drains or pipes this week. 

On top of household issues, managing my dad's needs is getting more complex. Some days are easier than others, today wasn't such a day. Each morning, I have a big laundry load on my hands with bed linens, and once I get my dad in the shower, I have to wash him myself, because he no longer has the capability to understand what he is doing in the shower. If that is where it ended today, that would have been more than enough. But my dad had several bouts of his irritable bowel syndrome today, both at home and out at the restaurant. Truly my parents are lucky I have a strong constitution, because most people would be physically ill with these bouts. I am talking intense clean ups of my dad, the floor, and his clothes. Which is why I travel with gloves, garbage bags, and changes of clothes. Literally I felt like I went ten rounds before 5pm. 

One of my friends, who knows the totality of what I am going through said to me that it is clear I am a very strong woman, I have great discipline, because any one of the things I am dealing with would cause most people to be depressed or unable to function. She asked me where this inner strength comes from? I don't know! Is it taking ballet at an early age and going to classes three or more times a week? Maybe! Was it moving to Los Angeles when I was 14, and experiencing ridicule and isolation? Maybe! Was it working my way through a doctoral program and jumping through countless hoops and graduating with honors? Maybe! Or was it having a precious child diagnosed with cancer and then die? Again, maybe! Or maybe it is all of it! We are the product of our experiences and the one defining quality about me is no matter how badly I feel, if someone needs my help or support..... I always put them first. So I suppose it is my service to others that is my compass and naturally my love for Mattie will always be my guiding star. 

Saturday, September 13, 2025

Saturday, September 13, 2025

Tonight's picture was taken in August of 2007. Mattie was five years old and we were visiting my parents in Los Angeles! That day we took Mattie to Travel Town in Griffith Park. Travel Town is an amazing train museum! It is a kids paradise, especially if they love locomotion.... like Mattie. The Museum is filled with vintage train cars and the fun part is you can climb aboard and walk through them. I can't tell you how many times we visited Travel Town. I have to admit, I could never get enough of it either.... I loved the history and the exploration through a by-gone era! There are so many things I would never have done if Mattie weren't in my life, he literally opened up a whole new world to me. 

Quote of the day: If you want to know what love is, have a child. If you want to know what grief is, bury him. ~ Giannina Brasch

This morning I went out to check the pool! I am hoping that after the light was fixed and the cracks were sealed that the water level would be stable! Forget it. After filling up the pool for four hours yesterday, the water level went down this morning. I am ready to pitch a fit right about now. So I am back to being Columbo and I will figure this out if it is the last thing I do! Meanwhile, I can't close this pool for the season, until I know where the issue is coming from and this may force me to have to resurface part of the pool to address this leak. Truly, I wake up each day and ask myself.... what else will go wrong today!? As many of you know, I have a running list of issues going on at the house and what makes all of this ten times worse is facing all of this alone. Some people do single well. I am not one of them! Which is why I got married at the age of 24. It was a life choice because I have always felt that sharing life with someone, and that means the good times and the bad, makes life worth living. It also makes the impossible times a little more possible. 

Later this morning, my dad's physical therapist came over to do a session with my dad. Keep in mind that I have known this therapist since 2022. So that is three years together, in which she has worked with my dad and my mom. Because she has been with me all these years, she knows about Mattie's death and about my divorce. Any case, she has just bought a home with her significant other and we talked about the challenges of having children. She was explaining to me how becoming a mom is something that frightens her. Honestly if you aren't frightened about having children then to me, something is wrong with you. Having a baby is a HUGE commitment. Both the physical feat of carrying to term, labor, and delivery, but then the real challenge is parenting. Parenting is one of the hardest and under appreciated jobs there is in life. I know with Mattie, as soon as I was pregnant, a switch flipped in my mind. He became my number one, not myself. His health and welfare were always on the top of my mind. As daunting as this responsibility is, it is also one of the greatest gifts in life. As I told her today, when and if this happens, she will figure it out, she will find a way forward, and some how when pregnant and then seeing your baby, she will develop SUPER HUMAN MOMMY powers! 

I may have been Mattie's mom, but it was Mattie's life that enabled me to learn volumes about myself. Mattie made me the passionate patient advocate that I am today. Through his cancer journey, I fought valiantly to save him and would have walked to the ends of the earth to find a cancer cure. Each time I help my parents or friends with medical concerns, guess who I think about? YES MATTIE. Mattie maybe physically gone from my life, but the lessons I learned from him have helped countless other people in my life. 

Friday, September 12, 2025

Friday, September 12, 2025

Tonight's picture was taken in September of 2008. Mattie was in his second month of treatment. As you can see he lost all his hair by that point. It only took his art therapists and child life specialist a few weeks to understand the likes and dislikes of Mattie. They quickly learned of Mattie's LOVE for cardboard boxes! Which was why as deliveries would come in, they would save boxes for Mattie! This photo shows the three boxes set aside for Mattie. He eagerly grabbed them and was taking them back to the clinic to start creating! I can't tell you all the marvelous cardboard creations Mattie designed that year in the hospital.... everything from a haunted house to a big airplane!

Quote of the day: Do not weep for those who have found Death's embrace early, for they weep for us that linger on in this mortal world of pain. ~ Stewart Stafford

One of my dad's physical therapists is going on maternity leave. So yesterday we were introduced to a young woman who will taking her place while she is on leave! It is interesting meeting someone for the first time. I say this because this is a person who knows NOTHING about my life. From her perspective, she comes into an organized, clean, and well run home, and she sees photos of Mattie everywhere. She even commented on how lovely Mattie's photos were to my dad. Therefore in the eyes of a stranger..... we all look happy, intact, and living a stable life. I of course kept quiet regarding the train wreck of my life, because these sessions are NOT about me, they are to help my dad. Nonetheless, the therapist asked me.... "what interior designer did you use to decorate your house?" I laughed! I laughed because I didn't use an interior designer, nor do I need one! I told her I decorated everything myself. I had a vision for these spaces and I executed on them. One of the things she commented on was the things I have on display on the walls. Any case, her lovely comment made me pause and acknowledge all the things I have done since I moved into this house. Truly how I am able to string two sentences together, care for my parents, manage the finances, run Mattie's foundation, and care for this house on my own without having a nervous breakdown, is a testament I suppose to me. 

Today the pool saga continued! Since I learned about the leaks on Tuesday, my pool company came to fix a majority of the issues. But they are recommending that part of the pool surface get resurfaced! NOT WHAT VICKI wanted to hear! So I await more information on this, and add it to my long list of things I need to address. All I can do is take a deep breath and try to manage one issue at a time. All my adult life, I lived in an apartment. I went from apartment living, to managing a home by myself. Truly it is daunting! What I have learned is slowly but surely, I need to find professionals who can help me, and who provide honest and fair assessments of the issues at hand. 

Meanwhile, I still have a hole in my dining room ceiling and a dismantled bathroom from the flood. Hopefully I will be able to address this with the contractor in October. Some days, the Godspell song Day by Day streams through my mind. When I was in middle school, our choir sang this song, and even back then, I found this song moving. It is funny how certain issues and moments of misery can trigger memories. Spinning through my mind today was.....Day by Day, Oh Dear Lord, three things I pray: To see thee more clearly, Love thee more dearly, Follow thee more nearly, Day by Day.

Thursday, September 11, 2025

Thursday, September 11, 2025

Tonight's picture was taken in August of 2009. By this point we knew that Mattie's cancer diagnosis was terminal. Mattie was attached to a portable pain pump and oxygen. Mattie wanted to play with his remote controlled boat. So we got his pool out and Captain Mattie was in control. Mattie always wanted to own a boat of his own when he got older. In fact, he would tell you that whatever money he was gifted, he was saving it in his piggy bank for a boat! Not a toy one, but a real one! I am saddened that wish never became a reality. 

Quote of the day: What separates us from the animals, what separates us from the chaos, is our ability to mourn people we’ve never met. ~ David Levithan

I found tonight's quote and when I read it, it immediately resonated with me. It seems very fitting to post such a quote on 9/11. As 3,000 people lost their lives that day and therefore 3,000 families will never be the same. EVER! Whether we were living in New York, Washington, DC or Pennsylvania, it truly doesn't matter. What matters is that our fellow Americans were tragically killed and that should evoke a response within all of us. A human response. As tonight's quote points out....... YES, I definitely think we are capable of mourning for the lives of people we never met. 

Yet there is a whole segment of our society who wasn't alive during this national tragedy in 2001. For them it has no significance, and to me, this is NOT okay! When my mom and I were talking about 9/11, my dad had ABSOLUTELY no understanding for what we were talking about. When I tried to explain to him what happened to the twin towers in New York, the Pentagon in Washington, DC or at that field in Shanksville, PA, he had no recollection. NONE! I am not sure why that upset me so much, as I know my dad can't remember one minute to the next and has lost a good portion of his long term memory as well. Yet events unite us. Common memories bond us, so where are we without these shared experiences? All I know, as a caregiver, is that I live with this pervasive loss daily, thanks to Alzheimer's disease. Each day, I see another piece of our shared existence get wiped away. Until like everything else in my life..... I am left with nothing! 

Like so many things, September 11, 2001, will always be etched in my mind. It was a beautiful sunny September morning, truly glorious. As if nothing could be wrong with the world, well until it was! I had the TV on and OH I SHOULD MENTION I WAS PREGNANT with Mattie. I was home alone and easing into the day, preparing for the university class I was going to be teaching that night. Then of course all hell broke loose as I was watching planes hitting buildings, buildings on fire, buildings crumbling, and people jumping out of buildings to desperately escape getting caught on fire. What I was observing was so horrific, so frightening, and incomprehensible. 

That day, I did not know what to worry about first. Our Country, my own safety living in Washington, DC, or the health of my baby. That week, I was supposed to have my first visit to the obstetrician. Obviously that never happened, and I will never forget that sickening feeling that things would never be alright again. I think it was the first time in my life where I saw first hand that bad things can happen to good people, that we really have no control over our own existence, and that tomorrow is NOT guaranteed.  

In a way, 9/11 is a national tragedy that bonds us together as a Country. We went through it together and therefore we can ALWAYS REMEMBER and grieve together. On a smaller scale though, what happens to parents when they loose a child to cancer? This is not a national tragedy, it isn't something we have all lived through, there is no TV coverage, and therefore it is not something we all learn to understand and absorb. THANKFULLY, as I wouldn't want everyone around me living with the death of a child. Nonetheless, not having this shared experience can leave grieving parents feeling very isolated! When I think about the enormous losses from 9/11, I can't help but look at that tragedy through my own lens of loss. So many lives NEVER TO BE FORGOTTEN!

Wednesday, September 10, 2025

Wednesday, September 10, 2025

Tonight's picture was taken in August of 2009. By that point, we knew that Mattie's cancer diagnosis was terminal. Mattie's last wish was granted.... he wanted a ride-on vehicle. We purchased "Speedy Red" and Mattie was thrilled. Our commons area in Washington, DC was the perfect place to learn to drive! I wasn't sure Mattie would understand the mechanics of driving, so I sat in the passenger seat providing coaching and guidance. But in all reality, Mattie was a natural. He understood the notion of a gas pedal and a brake. How he loved zooming around in our commons area and though Mattie did not get a long amount of time with Speedy Red, it created lasting memories of our last few weeks together. 

Quote of the day: Love is like the wind; you can’t see it, but you can feel it. ~ Nicholas Sparks

There are moments in my life that I sometimes have to pause and go back through Mattie's blog. It helps me get a glimpse into my thoughts and feelings at a particular point in time, and I can compare it to where I am now! Given that Monday was the 16th anniversary of Mattie's death, I decided to go back to September 9, 2009 (the day after Mattie died). I included a segment of that blog posting below for you to read. 

How I opened up that blog passage, captures how confused I was.... after all, for that entire year I reported to friends and family about how Mattie was doing. I would recount his day, the struggles Mattie was facing, and I would share my worries and fears. But after Mattie died, the blog could have died too! It would have been understandable as my little boy's courageous journey ended. Somehow I had the instinct to keep on writing! Back then, I said I was going to write the blog through Mattie's funeral (which would have meant writing for another month after Mattie died). Kind of ironic, because now 16 years after Mattie died, I am still writing this blog DAILY. 

The blog has evolved over all these years from you hearing about Mattie's day and his battle with cancer, to my grief and trauma journey as I face so many forever losses. It is truly remarkable all the things you, as my reader, have experienced with me! I mention this because I think what caught my immediate attention after reading the September 9, 2009 blog posting was the importance of connections, friendships, and sharing inner most thoughts. 

Frankly I have NO MEMORY, NONE, of going out to lunch with my friends the day after Mattie died. Truly it is a complete blur! I read the words tonight and tried to picture that day.... I couldn't! The blog did not jog my memory at all. I can't picture what restaurant we had lunch and I most definitely don't recall the meaningful conversations we had! I chalk this up to being totally traumatized and truly back then my body may have been moving but my mind and heart were somewhere else.    

Certainly my grief looks different than it did in 2009. In 2009, everything felt so raw. It was like walking around without skin to protect my body. That was how painful it was to navigate in the world without my son. Now 16 years later, the grief and the feelings associated with that loss have gone from being on the surface and raw to something much deeper and more pervasive. The loss of Mattie is equivalent to having grown a third leg. It travels with me where ever I go, it impacts how people view me, how I view myself, and it influences how I perceive the world around me. Any one who says that time heals all wounds is 100% incorrect. Wounds may heal on the surface, but then I may hear a particular word, feeling, memory, experience, or trigger, and guess what.... the grief wound opens right back up. The difference though is with time you get better at accepting and understanding this pain and learning ways to cope with this uneasiness, disappointment, sadness, and the unfairness of life.

Blog Posting from September 9, 2009..........................

As of today, I have to acknowledge the fact that the blog and the nature of the blog has profoundly changed. The blog was originally created to inform you about Mattie's day, his condition, and his treatment. However, over time the blog evolved and in a way gave birth to our family's story that captured the hearts, minds, and souls of a community. A community that I would be lost without, a community that wasn't afraid to walk through our painful days and NIGHTS, and a community that has shown me that with love and compassion wonderful things can happen even in crisis. Today is the first day I am writing, but I am not reporting about Mattie. I have no Mattie reactions, stories, or reflections of his day. This in and of itself is VERY upsetting, but I decided that I would continue the blog through Mattie's funeral, and then assess what I will do after that point. I have no idea what I will be writing about, or how I will be feeling as Mattie's death continues to hit me. However, in the mean time, I am honored that many of you want me to continue to write, and that you are willing to support us through our grieving process.

I had a very hard time going to sleep last night. My body has been profoundly changed from living in a PICU, but also living with a very sick child who was up every two hours at night. One thing was consistent, I woke up crying. I am surrounded by Mattie's things, and at times I almost have the sense that Mattie is with me. I am so USED to caring and meeting Mattie's needs 24/7, that is it VERY hard for me to now relax. I am that stressed out, and that type of intensity, doesn't go away with one night of sleep. I have many months of physical and emotional recovery ahead. I sat in Mattie's room this morning and just looked around and was flooded with all of his creations and toys. It is hard to believe that he is gone. I know he is gone, but I can't accept that he is gone.

As I was getting dressed today, I debated what necklace to wear. For the past 13 months I have been wearing Alison's Hope necklace. I clung to that necklace and it brought me strength and courage on some of my darkest days. Yet today I felt compelled to wear something that reminded me of Mattie. So I pulled out the necklace he made for me at the Lombardi Clinic. I featured a picture of it on the blog recently, it has different glass animal beads on it. Any case, wearing this necklace today reminded me of Mattie and the incredible love we have for each other. Mattie and I were clearly mother and son, but Mattie and I in a way had a deeper and more spiritual connection. We just understood each other, and with his death, I feel like a part of me has died with him. Mattie looked like me, acted like me, and we had similar personalities. So how is it possible to lose such a force and not be affected?

My mom and I went out to lunch today with my friends Ellen (Charlotte's mom) and Christine (Campbell's mom). I never thought I would be doing this after Mattie's death. Instead I pictured myself balled up in a corner or not leaving my bed. That could still happen, and I may have days like this ahead, but today, getting out of the house was necessary. Getting flooded at home with Mattie's memory can be overwhelming! At lunch we had moments of crying, moments of laughter, and moments of deep reflection. One thing we did all agree upon is the need to take more time to nurture our friendships. Mattie has taught us to appreciate life and our connections. Taking the time to see and share feelings with friends is one of life's greatest gifts, and I am happy that I stepped out of comfort zone and am beginning to allow my friends back in. I asked Ellen and Christine about how their children were reacting to Mattie's death. I was deeply touched to hear how upset and sad Charlotte and Campbell were to hear the news. I certainly do not want Mattie's friends to feel upset or uncertain about life or even worry that this could happen to them, but I am happy to see that Mattie's life touched them so much, that they cried and asked profound spiritual questions. For example, why did God allow Mattie to die? An excellent question asked by a seven year old, and one that even I as an adult continue to explore. I thought it was interesting that Campbell asked his mom if she knew how he felt. If she ever lost a close friend when she was seven. We talked about this at lunch, and all of us never lost a friend like this when we were growing up, so in all reality we do not know what is going on in the minds of Mattie's friends, but I am very happy that children are being given the opportunity to talk about Mattie's death and to ask questions. It is our responsibility as parents to be able to talk to our children about death, and when we do not talk about these sensitive topics, they unfortunately do not go away. Children have active minds and when we do not guide them, they will come up with explanations of death on their own, explanations that could be misleading. Thank you Ellen and Christine for a lovely lunch and for giving me two new green friends. The plants are beautiful! I haven't seen plants in my home for over a year, because plants have been replaced by LEGOS (actually plants can grow molds in their soil, which could be dangerous for chemotherapy patients, which is why all plants were removed last summer)! Reconnecting with friends made me feel less isolated, and Christine told me that we are friends regardless and Mattie's death will not change that. You couldn't have said anything better to me today, that was a gift!

One thing is for certain though, I feel no regret about Mattie's treatment and care. I was there EVERY step of the way, took an active role in his treatment, never allowed him to be alone during any part of this process, and was always open and honest with him during this fight. I am now worn out physically and mentally, but it was worth it, because if I had even one doubt about my actions, it would weigh heavily upon me. I have no regrets about our actions, and that alone is peaceful. The one thing I encourage you to do, because I CAN'T do it, is after you read this, stop and pause, find your children and hug them. Never take for granted the time you have with them. I realize life is busy, hectic, and you may feel you can catch up on things the next day. Maybe, but here is the key point. You have your child with you, and that in and of itself is a gift that you shouldn't lose perspective on.

Tuesday, September 9, 2025

Tuesday, September 9, 2025 -- Mattie died 811 weeks ago today.

This is a hand print of Mattie's. This print was made out of model magic on the day that Mattie died, September 8, 2009. Mattie's child life specialist came into Mattie's room and took a hand and footprint of him. I can't tell you how much these prints mean to me! You can see in the photo below that these prints sit on the Italian music box I bought after Mattie died to house his ashes. All art work... paintings, drawings, clay objects, poems, Lego structures, jewelry, and the list goes on that Mattie created are legacy pieces. They are reminders of my incredible 7 year old, who loved life, his family and friends, nature, all vehicles with wheels, and Legos.  

Mattie loved anything that was creepy and crawling! I have a feeling he loved these things because I didn't! My tribute to Mattie, has always been to have a plastic spider on his hand print..... highlighting his humor and whimsy! I will never forget in October of 2008, someone gave Mattie a remote controlled spider. One night, around midnight, Mattie sent that spider down the hospital hallway to scare his nurses! You had to love Mattie! Mattie's nurses were great sports and hammed it up when they saw that spider! I will never forget any of these antics and the amazing women in the hospital who knew that getting to know the child was as important as administering him the medicine.  

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

Yesterday I ran my hose into the pool for 8 hours. You heard me correctly, 8 hours. I needed to refill the pool in order for it to get tested for leaks. Since I hadn't filled the pool in a week, it lost 7 or more inches of water! It seems somewhat counter intuitive that I had to refill a leaky pool, but there was no other way for the testing process to effectively work. After the ordeal of filling the pool, before I went to sleep last night, I looked up at the moon and said to Mattie.... please watch over me tomorrow. I just can't handle a major issue with broken pipes. Truly all I could picture was my backyard getting dug up, looking for leaks. 

When I tell you that I have practically had every problem possible in this house, I am not kidding. My rolodex of companies who have come to help me is growing. Today, I had the wonderful opportunity to work with American Leak Detection. I got to meet Devon and he was an absolute peach of a person. He welcomed me to observe and participate, and naturally I did, because I want to be knowledgeable about everything on the property. 

I explained the issues I was observing over the last week to Devon. I told him where I suspected the issues were coming from and he listened and took it all in. I watched the entire process for two hours and observed how dye is injected into cracks, drains, skimmers, and returns. If there is a leak, the dye is sucked into the area where there is a leak. I got to see this first hand today! Truly it was fascinating, as the process required Devon to get into the water, he needed googles, patience, and I admired that he was methodical. Sure enough there were leaks in pool lights and in some of the cracks I noticed on the surface. Not that this is great news, but I began to feel somewhat relieved that perhaps this was what caused the water loss in the pool, rather than broken pipes! But of course once the dye testing was done, then Devon tested the pressure in the pool. As this is the way to confirm whether the issue truly involves the pipes into the pool. I learned a lot today and as I told Devon, God was with me today. I have NO leaky pipes! Seriously I felt like I won the lottery, because I truly did not know how I was going to manage a much larger problem. 

Any case, before Devon left today, he wanted me to know that my observations and instincts about the leak problems were spot on. I can't tell you how much that meant to me because managing this house alone is daunting. I have had a steep learning curve over the last two years, but with each problem I face, I realize..... I can do this! If I can't do it or figure it out, there are qualified people who can help me. Asking for help can be embarrassing, but I got over that embarrassment after month two or three. Now I am onto finding a way to get all of these issues fixed. I am grateful to my leak detection angel, for Devon figuring out the problems and for his kindness throughout the process. Devon clearly loves what he does and it makes such a difference when you are working with people who are passionate about their jobs. It makes what feels like the impossible, a little more possible.  

Monday, September 8, 2025

Monday, September 8, 2025 -- Mattie died 16 years ago today. 

Tonight's picture was taken in October of 2007. To me this is the quintessential Mattie photo! I remember snapping it at Butler's Orchard in Maryland. Mattie loved going to this farm in the fall, because they had hayrides out to the pumpkin patch, where Mattie checked out the vines and pick out one of those wonderful orange orbs! I thought we would have many more Falls like this, but unfortunately the following October, Mattie was enduring chemotherapy. 

Quote of the day: In the garden of memory, in the palace of dreams…that is where you and I shall meet. ~ Alice Through the Looking Glass

Last night, after I got my parents to bed, I went into my bedroom. It was lit up like a Christmas tree, accept there were NO LIGHTS ON! It was Mattie Moon, shining right into my bedroom. You can see the light on my bedroom floor. So I walked over to the window and looked up! There it was.... a huge Mattie Moon. 

I think this full moon was not a coincidence! It was a message to me from Mattie. What better way for him to tell me that he is with me, than shining brightly down on me on the eve of the anniversary of his death!

Mattie Moon aglow last night!

Perhaps it was the fact that today Mattie is gone 16 years from my life, or all the many things I am facing and juggling..... but all I know is I did not sleep well last night. When I woke up this morning, I was deeply grateful to receive text messages and emails from friends. There is a very comforting feeling to know that Mattie isn't forgotten and that my forever loss was acknowledged!

After I dropped my dad off at his memory care center this morning, I came home and did some work. Then the doorbell rang. But it was a strange ring. So I went to check it out. The surprise was receiving Mattie themed flowers from my amazing friend in Missouri. I am a big Gerber daisy fan and of course seeing all that orange, was a definite tribute to Mattie (whose favorite colors were orange and red!). Ironically I have never met my friend in person, yet through 17 years of blogging, we have become forever friends. For which I am grateful. 

In a way, receiving these flowers today, helped me see that I have a doorbell issue. A big one. I called up the company, who had me on the phone for 90 minutes, and then another hour this evening. Turns out they now see I am right.... there is NO fixing this thing, it has to be replaced. The list of issues for me just continue to grow. 

Tomorrow, I am hoping that Mattie is looking out for me, because I will find out where the leak in the pool is coming from. Here's the kicker, the company called me today and asked me to fill the pool back up! That if it isn't filled, the dye and other devices they put in the pool won't work! So for six hours, I have been refilling the pool. This brings me NO HAPPINESS! 

I did take my mom out for tea today, and while out, I looked around me and all I could see or perceive to see, were normal and happier people than me. People who do not seem to be carrying the weight of the world on their shoulders. OF COURSE I am generalizing, because everyone faces something. But I guess in my context of it being the anniversary of Mattie's death.... my world seems to have stopped spinning, but the rest of the world keeps functioning. People are not as devastated by this as I am, and I would say this is the one thing about grief. It plays mind games with you, because it is very disorienting to see how your world has changed forever and yet what is crushing to you, doesn't appear to have the same affect on others. It is humbling! 

During difficult times, Mattie always asked me to recount the story about the day he was born! The last time I told him the story below was on August 5, 2009, the day I found out that his cancer had metastasized. He and I were waiting for results in the hospital rose garden and somehow Mattie knew something was very wrong. So he literally crawled out of his wheelchair and sat on my lap. It was at that point, he asked for the story! I knew the story he was referring to, the story I never got tired of telling. In honor of Mattie, his amazing life, and for all that he brought to my life, I share this Dearest Mattie story with you (a story that was on display at his celebration of life event in October of 2009). 

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My Dearest Mattie,

It is said that parents love their children right from the moment they are born. However, in your case, my love for you began as soon as I learned I was going to have a baby. In fact, right after seeing your sonogram picture, I felt like a proud parent. I posted those pictures everywhere. I 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. I did not only love you, I 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 I always admired in you.

This video is a tribute to you and your wonderful, yet short life (it is the video at the top of the blog). 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 I 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 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, I headed to the hospital and was 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, your dad 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 your dad 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. Your dad 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 your dad very happy! After the c-section, I had to have bladder surgery to remove the tumor, so your dad stayed with you and accompanied you to the nursery. I learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. 

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 your mom loves you, cherishes you, and that feeling will remain with me forever and always. Good-bye my Mooshi Moo angel. With love from Una Moon!

Sunday, September 7, 2025

Sunday, September 7, 2025

Tonight's picture was taken on September 8, 2009, the day that Mattie died. I wanted to capture Mattie's precious foot. Mattie's death was not peaceful, instead it was traumatic. Fraught with intense pain, gasping for air, and his bed looked like a crime scene for five to six hours. There wasn't enough pain meds that could be injected into his IVs. Which was why, Mattie's doctor eventually prescribed a lethal dose of propofol to aide in his death. When I tell you this will live within me forever, I am not kidding. While the propofol was being injected into Mattie, I was holding him in my arms. Within a minute, his body went limp and the monitor behind me flat lined.  FLAT LINED.....The most horrific sound a mother could ever hear! 

Quote of the day: The reality is that you will grieve forever. You will not 'get over' the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same nor would you want to. ~  Elisabeth Kubler-Ross

Tomorrow, September 8, will mark the 16th anniversary of Mattie's death. 16 years! How on earth is that possible!? Mattie has been dead twice as long as he has been alive. Truly it is too much to bear, and anyone who thinks a mom gets over the traumatic loss of her child is 100% wrong. I know my friends wanted me to return back to the way I was after Mattie died, and I suppose within their reflections they were trying to give me hope. But the reality is this..... platitudes, niceties, and the Disneyland view of the world doesn't work for bereaved parents. 

The only way to help a grieving mom, is for you to find the inner strength to sit with her in this grief. It means hearing over, and over, and over again her stories, her fears, her tears, and her sadness. Frankly it is a place that is hard to be in and the depths of this loss are truly overwhelming for most people. I say this because I lost many close friends over the death of Mattie. My life was too much for them, and as one friend told me, her family encouraged her to end our friendship after 15 years because it was making her sick (knowing what happened to Mattie). 

I went back to my blog posting from September 7, 2009, the day before Mattie died. I copied and pasted a portion of the blog below. What surprised me was reading my words from 16 years ago, they truly struck me. These words hit me emotionally, because it transported me right back in time and I could feel the fear, despair, and depression in my words. That blog posting brought me to tears. When I wrote it, I did not know Mattie was going to die the next day. In retrospect, since I reported that Mattie's nurses came in to say good-bye to him, I should have put two and two together. But I didn't! Maybe I just couldn't! With Mattie's journey we had two modes.... fighting for a cure and then helping him die. There was no time in between to process anything, to find equilibrium, which I think made it very hard to transition from a cure to death. 

At the end of the blog posting, I mention that we were gifted a family beach trip in September of 2009. Honestly if I did not write about it, I would NEVER have remembered that gift. The gift is a blur to me, but what that gift tells me now is even Mattie's treatment team did not think Mattie's cancer was going to metastasize six weeks off of chemotherapy. I think they thought we would have more time together before a cancer recurrence. 

Before leaving you with my words from 2009, I feel it is important to state that one of the things that comes through in that blog post is the incredible support community that surrounded us. Mattie had the BEST nurses! They became our family for 14 months and the blog comments from friends highlight how thousands of people walked this heart wrenching journey with us. To those of you who have been with me since 2008.......... THANK YOU, for those of you who are just tuning in, thank you for joining my Mattie blog family. 

BLOG POSTING from ---- September 7, 2009 

Our day started out with a sad scene. Mattie's fish, the special gift my parents got Mattie yesterday, died! I knew this was an ominous sign today!

Mattie had a very difficult start to the day. His blood pressure has been dropping and is dangerously low, and he had a coughing fit, which left him gagging and unable to catch his breath. He was deathly scared, and when Dr. Shad and Kathleen (Mattie's outstanding HEM/ONC nurse) saw him, they mobilized into action. In reality what happened next moved so fast, it was almost a blur. Mattie was in minutes being pumped up with pain medications and Versed (for anxiety). Now that I can reflect on the morning, I am so thankful we are in the hospital. Because Mattie couldn't possibly be cared for humanely at home based on the symptoms he is presenting. It is ironic that Mattie seemed to know this, and had a better feeling for his condition and his decline than us. Once Mattie received all this medication, he asked if I could snuggle with him, which I happily did. However, Mattie is being kept in a comfortable state, so therefore he really isn't talking and spends a lot of time sleeping. The Mattie we knew is NO longer!

Dr. Shad came to the hospital early because she felt that the end was near for Mattie. She stayed at the hospital all day, and we had a great deal of support from the HEM/ONC nurses (Kathleen, Tricia, and Miki). This whole scene of watching Mattie slowly dying is heart wrenching and at the same time surreal. How can my healthy, active, bright, and spunky son be dying? I see it happening, but it is SO hard to accept!

We spent a great deal of time today monitoring Mattie and also talking with him. In fact, when everyone was visiting, we had solemn moments, but also moments of laughter. Laughter because Mattie was a very humorous fellow! Kathleen told me that the nurses love Mattie, but they also love us. That Mattie has left a legacy, and his love will always live on within us. Mattie did not go to school this past year, but in a way he went through the hardest school of all. The school of cancer, which shows you the most vulnerable and raw sides of life. In fact, it has left me so raw, that I emotionally am not the same person anymore.

Mattie's nurses all came in tonight at their shift change to kiss and say good-bye to Mattie! It was very touching. Kathleen told me that even though Mattie isn't awake, he can hear us, and that he worries about us and is holding on because he knows we do not know how to say good-bye to him. So tonight, we mustered the energy to talk with Mattie together. We told him we loved him, were proud of him, that he did a great job fighting the cancer, but now he is in control and can decide when he has had enough and wants to rest. That we will be okay, and that we will always, always love him. We told him that we couldn't have asked for a better son, and that he was going to a place where he would be at peace, able to run and play, and meet up with family members and friends who love him but whom he has never met. My sign off tonight, as it always is to Mattie was, "Una Moon loves Mooshi Moo." Mattie coined the nickname, Una Moon for me, and he is my Mooshi Moo.

It is hard to say how long Mattie will be with us. It could be hours or days. But it is no longer weeks! His whole disease has been one crisis after another. His cancer required three major surgeries, 11 months of chemotherapy, and intensive physical therapy. However, there was NO break between treatment and recurrence. In addition, even death is not an easy process for Mattie. It has hit him hard and hasn't given us the chance to talk as a family. This year has left me shell shocked, questioning everything about life and the future, and the true purpose for our lives. Mattie is being kept comfortable, which is a blessing, because the sounds coming out of his body and lungs are frightening. I doubt we will sleep at all tonight! I am saddened that Mattie will be unable to go on a planned beach trip that the Lombardi Clinic arranged for us on September 13 through the Foundation, Believe in Tomorrow. It wasn't meant to be clearly. One thing I do know is I hate Osteosarcoma with every fiber of my being. I have seen Mattie suffer way too much this year, and this suffering will always remain a part of us.