Saturday, May 10, 2025

Saturday, May 10, 2025

Tonight's picture was taken in May of 2006, on Mother's Day! I will never forget that moment in time. Mattie was four years old and at that moment in time, I thought there would be many more celebrations like this together. You may notice next to us was a bag. This was my bag of tricks.... filled with puzzles, Legos, coloring books and activities to keep Mattie focused and seated at the table. Unlike me, Mattie was not motivated or intrigued by food. Therefore, it required creativity to get Mattie to eat. When I tell you that Mattie was my life's greatest teacher, I am not kidding. I learned so much being his mom in 7 short years. 

Quote of the day: The mention of my child’s name may bring tears to my eyes, but it never fails to bring music to my ears. If you really are my friend, please, don’t keep me from hearing the beautiful music. It soothes my broken heart and fills my soul with love. ~ Nancy Williams

Tonight's quote is spot on! It is vitally important to me that Mattie's name be spoken, remembered, and that his legacy continues. Which is why I write everyday! I haven't missed a day..... imagine writing for 17 years straight? Well I have, and it has become part of my daily routine like brushing my teeth! I can't imagine a day without Mattie's blog. It is in these moments of writing, that I feel like an active mom to Mattie. Strange as that sounds. It takes energy, focus, and determination to share and nurture my child's life and memory, but I would have it no other way. 

This morning, I received a text message from one of the researchers I have worked closely with for over a decade. She wrote, 

I will be thinking of you tomorrow as the mother of beautiful Mattie, the mother of the first set of Psychosocial Standards of Care and the most incredible daughter!

As I told her these words are the gift! I strongly believe Mother's Day is not about the cards, flowers, and gifts, and instead more meaningful and intentional acknowledgments. I am honored that this same researcher is doing a presentation this week on the Standards of Care at a well known cancer institution, and guess who will be featured on her first and last slide? MATTIE! Music to a mom's ears. Between the Standards of Care that guide the evidence-based care for all children with cancer and hearing that Mattie's photo will be shared, I pause and acknowledge...... I will always be Mattie's mom and as long as I have breath and life, his memory will be shared with the world, and I remain confident that the lessons I learned from Mattie will hopefully make access to psychosocial care and support more effective for other children and families to come. 

Friday, May 9, 2025

Friday, May 9, 2025

Tonight's picture was taken in May of 2003. I posted a similar picture last night, but this one is equally priceless. Check out that goat! I am not sure who was more interested in the other.... but what I find so adorable was Mattie's big smile. He wasn't afraid, more intrigued and fascinated. I experienced so many adventures with Mattie and his loss reverberates throughout my life. It is a loss you just never get over! 

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

I do not believe in coincidences. Today I learned from two different friends, that family members who were pregnant, lost their babies. Losing a child at any stage of development is deeply painful. As we head into Mother's Day weekend, I can't help but reflect on how this loss is impacting these two women. When you become pregnant, the hope of being a mom quickly fills your head. Certainly you are scared carrying a life within you and you worry about whether you are qualified to be a good mom. But from the moment you learn that you are pregnant, you begin to envision your baby and what your life will look like. 

When a baby or child dies, your life as you envisioned it comes to a crashing halt. It is also natural to look for explanations for this loss, and as any good mother will ask herself..... was I the reason this baby/child died? Unfortunately what I have learned with Mattie's cancer diagnosis and death, is that there are some things that DO NOT make any sense and are out of our control! You can do everything right and loss still happens. 

These moms left home as THREE (mom, baby to be, and dad) and they returned home as TWO. Two that now need to face baby items that have been purchased and a space decorated and ready for a baby. It is heart breaking. The day that Mattie died, September 8, 2009, is a day that will remain with me always. Mattie suffered a horrendous death. He was gasping for air for six hours and the amount of pain meds being pushed through his IVs made his bed look like a warzone. Filled with syringes! Mattie refused to die, his body had finished functioning, but his spirit wanted to stay with me. In the end, Mattie was injected with a high dose of propofol in order to induce a coma. While this dosage was given to Mattie, I was holding him. Within seconds his body went limp and the machine monitoring his vitals, flat lined. It is a sobering reality to hold your child in your arms while hearing this deafening flat line! 

Mattie chose to die in the hospital, which was a brilliant choice, because I could never have managed his pain at home. After Mattie died, his favorite nurse, Tricia was with us. Ironically we started our journey with Tricia and ended Mattie's life with Tricia. I think Tricia came into our life for a reason and to this day, we are still connected. That is how deeply connected Mattie left us. When Mattie died in the hospital, Tricia had to clean Mattie's body and prepare him to go to the hospital's morgue (yes in a body bag). The cleaning was almost ritual like, as if we were taking part in a religious sacrament. But there was also an impromptu wake in Mattie's room with about 15 people sitting around Mattie in a circle, recounting memories and saying their good-byes to Mattie and lending support to us. Once this was over, then the reality hit...... we entered the hospital as three and left as two! I can't tell you how traumatized I was, what a hollow, empty, and sickening feeling took over, and I had no idea how I was going to go on without my son. 

As I reflect on my own loss, I am cognizant that many companies are asking customers whether they wanted to opt out of receiving communications about Mother's Day! When Mattie died in 2009, such an opt out message did not exist. But with more sensitivity to loss, trauma, and hardships regarding motherhood, companies now give people options. 

As Mother's Day approaches, please pause and reflect on all the individuals whose mom's may have died, and all the women who either could never conceive or lost a child. This pain and loss are felt daily and definitely heightened on Mother's Day. 

We are programmed to look for gifts on Mother's Day, but here's the thing..... if you are lucky enough to have a healthy child, then from my perspective you have already received the best Mother's Day gift there is...... no flowers, cards, chocolates, or items can replace the GIFT OF LIFE! 

Thursday, May 8, 2025

Thursday, May 8, 2025

Tonight's picture was taken in May of 2003. Mattie was a year old and that day I took him to the Reston Zoo. This was probably his very first trip! As you can see by the big smile on his face..... he loved it! Mattie gravitated to animals and nature. In the pen in front of Mattie were goats! One goat came right up to the fence line to greet Mattie. Which was what triggered Mattie's excitement. I can't tell you how many times we visited this Zoo, and every visit was a big hit! All I know is life with Mattie was never boring! He had a joy for life and his energy was contagious. 

Quote of the day: Grief, I’ve learned, is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go. ~ Jamie Anderson

Today, I recalled a moment in time. I do not always have these opportunities because for the most part, people who I see everyday now do not know me as a mom. They aren't aware of Mattie's existence or the horrors I have endured. But while talking to a friend today, who does know these horrors, I shared this story...............

In September of 2008, we took Mattie to New York City to consult with a renowned doctor specializing in bone cancer. We wanted a second opinion and to confirm that Mattie's plan of care offered to us in Washington, DC was the right one. Of course NOW I KNOW..... medical care for cancer is standardized. So in essence Mattie would have been offered the same protocols anywhere in the USA. Naturally these protocols can be slightly tweaked, but they are basically all using the same chemotherapies. 

Any case, I will never forget this September day. My parents and Karen (my life time friend) were with us. We waited for FOUR HOURS to see this particular doctor. As you can imagine, with each minute passing by, I was getting more aggravated and stressed out in the waiting room. After all, we had Mattie with us and his desire to stay confined to this waiting room for hours on end was challenging at best! 

After four hours of waiting, we were brought back to the doctor's office. One of his staff members came flying into the room and she told us, that the doctor could only meet with us for five minutes, because he was giving a keynote speech at a gala across town. The fact that I did not snap that woman's head off is a remarkable! Here I was a traumatized mom looking for help and guidance, with her son in tow, and all they were worried about was the doctor's keynote speech. 

When the doctor graced us with his presence, there was no apology for waiting for hours. Instead, he looked at us and basically said he did not know why we were consulting with him. He proceeded to explain that he did not know one child with multiple primary bone tumors who had ever survived. Before he said ONE MORE WORD, I put my hand up to stop him from talking. I told him that we were NOT having this conversation in front of Mattie, a six year old! You think he would have known better!!! So I escorted Mattie back to the waiting room and he waited with my parents and Karen. I went back into the doctor's office and he did not skip a beat. He continued. He told us we should not even elect to start treatment, but instead, enjoy whatever time we had left with Mattie and move directly into palliative and end of life care. Basically that there was NO HOPE!

This nightmare conversation happened 17 years ago, and I can remember it like it was yesterday. This doctor maybe considered a guru in his field, but his ability to empathize and relate to his patients and family was inhumane. He instilled no hope, and when I left that room, I felt like I wasn't going to make it, that I too was dying. Yet I had a six year old that needed me and I had to pull it together mentally to be strong and resilient for him. Naturally that day I wrote about this nightmare of a visit on Mattie's blog. Our care team in Washington, DC were daily blog readers and therefore read my words and understood immediately how devastated I felt. 

While driving from New York City back to Washington, DC I got a phone call in the car. I picked up the phone and it was Catherine Silver, our case manager at our Washington, DC hospital. She wanted me to know that she and the team knew our trip to NY was very difficult, and then she said..... YOUR GEORGETOWN family is awaiting your return, we are here for you, and we are ready to start treatment. Catherine's words were exactly what I needed to hear at that moment in time. It was like she was performing CPR..... she breathed life right back into my head, heart, and body. Yes words are powerful and they gave me the strength to carry on and to have confidence to proceed forward. WE ARE HERE FOR YOU, is equivalent to my other favorite line.... YOU ARE NOT ALONE. 

Ultimately was the NY doctor correct? Yes, medically he was correct. Mattie died, but psychosocially he was all screwed up! Why? Because, if I had proceeded with palliative and end of life care without fighting and trying every possible avenue to beat back Mattie's cancer, then I know I would have lived with a lifetime of regret. I would have felt guilt and disgust with myself that I did not give 100% to try to regain Mattie's health. That guilt would have weighed on me for the rest of my life and unfortunately this doctor did not think passed the data he saw on paper. He couldn't understand that such decisions have long term psychological consequences on an entire family. 

That visit to New York remains with me always! It reminds me that in all of our interactions, we have a CHOICE! We can build others up and give them hope, or we can quickly destroy them and impact their will to live. 

Wednesday, May 7, 2025

Wednesday, May 7, 2025

Tonight's picture was taken in May of 2002. Mattie was a month old and this was a quiet moment in the living room together. I can still remember that sweet, soft, and little head against mine. Mattie and I shared a closeness, a meeting of the minds and heart with each other right from the beginning. As Mother's Day approaches, the impact of his loss is still greatly felt. 

Quote of the day: Courage is about learning how to function despite the fear, to put aside your instincts to run or give in completely to the anger born from fear. Courage is about using your brain and your heart when every cell of your body is screaming at you to fight or flee—and then following through on what you believe is the right thing to do. ~ Jim Butcher

Every morning I wake up and wonder.... will today be a more peaceful day? Today wasn't such a day! After I dropped my dad off at his memory care center, I came home and got my mom in the car. She had a rheumatology appointment at the hospital. We joke all the time, because my mom has an easier time accessing Prolia than I do! I am still waiting for pre-authorization since March! My mom's doctor is lovely and after the appointment she sent us to the hospital lab for blood testing. 

But I was watching the clock because I had to return home to meet my electrician at 1pm. Needless to say, I was never able to take my mom out today for tea, which she looks forward to on days my dad goes to his memory care center. I was so busy with the electrician that I never had lunch. I worked with the electrician for about three hours. The front lights are now working! There are extension chords that my husband ran from the porch to the driveway, in order to get electricity to that space. When the extension chords were plugged into each other, there were no extension chord waterproof covers installed. So imagine connecting one extension chord to another, and the junction where the two chords meet wasn't covered and protected from the elements. So with the huge rain storm we had two nights ago, the plugs from the chords got wet, and triggered the GFI to trip. Any case, I located chord covers in the garage cabinets and we installed them today. So the issue that I thought was going to be hard, turned out to be an easy fix. Overall, Bob was impressed that I diagnosed the issue, I just did not know where the extension chord covers! Now I know they are needed. 

From there, we went into the backyard. There were two outdoor lights not working. Bob showed me how to change one of the lights and that was easy. But the the second lantern light was a major problem. He and I were on this issue for two hours. We dug up the wires to understand where the issue originated from and despite rewiring it, the light still doesn't work. So after all of this, I still have an issue. So I called for an appointment with my landscaper to see if he can figure out the problem. 

What I can say is I have become problem solver extraordinaire. Bob was impressed how I was working with him in the dirt, trying to trace where the wires went into the lantern light. I want to learn how things work because I am solely responsible for everything and need to be self reliant. What my separation and divorce have taught me is NEVER rely on anyone for anything. I must be self sufficient, knowledgeable, and in control of all aspects of my life. 

Tuesday, May 6, 2025

Tuesday, May 6, 2025 -- Mattie died 793 weeks ago today. 

Tonight's picture was taken in May of 2002. Mattie was a month old. That day I tried to snap multiple photos of Mattie, in hopes of capturing the "perfect" photo for our baby announcement. Yes he wasn't a newborn by that point, but what I love about this photo series was Mattie's character and spirit were already shining through! To me this photo screams out.... HEY I AM CURIOUS AND WATCHING YOUR EVERY MOVE!

Quote of the day: I have seen many storms in my life. Most storms have caught me by surprise, so I had to learn very quickly to look further and understand that I am not capable of controlling the weather, to exercise the art of patience and to respect the fury of nature. ~ Paulo Coelho

Truly some days I just have to laugh! I had high hopes for my morning. I thought I would get my dad up, do the morning routine and then get to Foundation work. I have several donations that I have to process and acknowledge. But getting concentrated time in my house is close to impossible. Today was NOT a disappointment. It lived up to my usual chaos. 

It started with a call to my electrician. I spent about a half an hour this morning diagnosing the outdoor lighting issue. The issue being that my front outdoor lights by the driveway are all out. The rain knocked them out. I checked the circuit breakers, they were fine. So I knew a GFI (ground fault interrupter -- a safety device in electrical systems) had to be reset. But where was this GFI located for this string of lights? I truly had NO IDEA, as it was my husband who installed most of our outdoor lighting. I never paid attention to the process, why would I? This was his thing, and I trusted he would always be there to manage so many things. 

Any case, this morning I was Columbo! I deduced that there was an extension chord underground running from the driveway, along our stone pathway, and into an electric outlet on the porch. When these extension chords were plugged in, they tripped the GFI. So I knew this outlet was the culprit. Of course I can't tell if the issue is an outlet, an extension chord, or another issue. Any case, my electrician and I know each other well. Keep in mind that when we bought this house, Bob was practically here daily for months, rewiring the house. As nothing was to code!  

I explained the issue to Bob and told him what I was able to figure out! He literally said..... you did a great job diagnosing the problem for me! But of course unless he is on site, it is hard to know how to fix it, so I am waiting for an appointment with him this week. The beauty of Bob is he charges by the project, NOT by the hour! So while he is here, I will have him help me with other lighting issues. Bob and my plumber, Cody, tell me all the time that I am on my way to becoming skilled in plumbing and electrical. Something to add to my resume. 

But this isn't where my day ended. I had to complete some annual paperwork for my mom. She gets benefits through the City of NY, but to qualify for these benefits, I have to complete documents that require information from Social Security. Typically my parents get a letter from Social Security each year, but this year, neither of them got their letters. So I tried to get into their on-line portals. Forget it! Which meant I had to call! I made FOUR calls to Social Security today and was on the phone for 4 hours! I AM NOT KIDDING. 

The first call was on my mom's phone and I NEVER spoke to a live person, but was able to request the form I needed, which will be sent by mail. The second call was on my dad's phone, again, never speaking to a live person, but requesting the document I needed to be mailed to me. Then the third call, in which I needed to speak to a live person at their help desk, I waited on hold for 90 minutes. When Wally came on the phone, he spoke to both of my parents and then he and I worked together to get access to my parents portals. That alone was about 40 minutes. 

My dad's portal was actually easy to access, it just involved resetting a password, but my mom's wasn't easy. Wally helped me and I thought I was all set, as I got into the system. So I hung up with Wally. Big mistake. Once on my mom's portal, more identifying questions were asked of us, and the system did not like the answers. Therefore, they locked us out of her account and suspended it. So this led to phone call number 4! I waited on hold for 20 minutes and then Jamie came on the line. I explained the problem. You are going to love this! The system has my mom's birthdate wrong! Jamie thought I was entering the date incorrectly, until I finally said to her..... I KNOW MY MOM's BIRTHDATE. She quickly realized that what was inputted into the system year ago was incorrect! 

So now the only way to solve this issue, is to go to a Social Security office, and the first available appointment is June 30! Truly I can't make this up! If it is going to happen to someone, it will happen to me. Unfortunately, I can't let my mom handle these issues alone. No matter how many times I explained to her what we needed to do, she still was confused at to why we were talking to Social Security. In addition, he was getting very anxious and unable to function. It is very hard being the only intact person in my house, with no one on the ground here to turn to for help, support, and to share the load. This is not how I imagined my life was going to look like and if someone told me I was going to get divorced and would be juggling caregiving, bills, a house, and the Foundation alone, I would have absolutely laughed! I (along with my family and friends) NEVER saw this coming. 

Monday, May 5, 2025

Monday, May 5, 2025

Tonight's picture was taken on May 5, 2002. My in-laws were visiting to meet Mattie for the first time, and that day all the cousins got together and we went out for ice cream. While getting ice cream, my father-in-law went into a store and purchased this beanie bunny for Mattie. Check out Mattie's reaction to the Bunny! He could hardly focus, yet was taking it all in!

Quote of the day: Your smile is your logo, your personality is your business card, how you leave others feeling after having an experience with you becomes your trademark. ~ Jay Danzie

This morning was like a three ring circus. I had to get my dad up, washed, dressed and downstairs for breakfast as well as get my mom ready for her in-home physical therapy appointment. I had to leave the house no later than 10am, in order to drop my dad off at his memory care center and then proceed into the city for my dentist appointment. My mom's therapist showed up 15 minutes early, which doesn't sound bad, but for me, it threw off my whole timeline. The therapist wanted to chat with me and was having trouble taking my mom's blood pressure. He was getting worked up about this, which worked my mom up, and then this stress sent my dad directly to the bathroom. Keep in mind, I was supposed to be in the car by this point. Any case, I pulled out my two blood pressure machines, told the therapist to try them, and then proceeded out the door. While leaving I basically said.... my mom is breathing, so clearly she has a blood pressure! The therapist wanted to know if I take my parent's blood pressure daily! The answer is NO! I do not run a hospital and if I deem that their blood pressure needs to be taken, then I take it. 

After dropping off my dad, I then drove to the city. It took me about 40 minutes to get to the dentist office and park. By the time I got to the office, I felt like I had gone ten rounds already. My hygienist is lovely and she knows all that I am juggling and facing. So she tries very hard to make the experience more spa like. In the dental room is a computer screen, when it isn't showing you x-rays and issues, it flashes cute cartoons. One of the cartoons had the quote that I posted tonight. I thought it was quite meaningful, as I feel the last part of the quote is something I always strive for.... to make others around me feel heard and special. 

Once finished with the dentist, I then drove to Arlington, VA where Mattie Miracle's mailbox is located. That was 20 minutes. Then I headed back home, which was another 40 minute drive. I went to my local post office to mail Mattie Miracle items and did other chores. However, I knew I had to get home no later than 1:30pm, because my mom wants to go out. Literally I felt like I was on a treadmill today. 

Later in the day, I spent about two hours outside cutting back shrubs and trees that are actually weeds. I am not sure how to describe this, but in a portion of my yard I have many self set weeds that look like trees, but they are actually invasive and wrap around good trees and plants. I went at it today. But of course, I had to stop because I had to make dinner. I truly do not get to focus on anything too long. 

Tonight we had a big storm and sure enough most of my outdoor lights went out. I was running around resetting GFIs and got most of them working again, but all my lights out front are out. A whole string of lights. I am SO SO frustrated because when I want help, there is no one at home to help me. I am hoping I can figure this out tomorrow, when it is not raining. But I can tell the transformer that controls the lights has no electricity, and therefore, I have to figure out how to reset it! Each day, I say GOD HELP ME! 

Sunday, May 4, 2025

Sunday, May 4, 2025

Tonight's picture was taken in May of 2002. Mattie was one month old. Back then, I had no idea if I was coming or going. I was recovering from a c-section, was dealing with post partum depression, and trying to learn how to care for a newborn. But as I always say.... Mattie was my life's greatest teacher! We learned to be in the world together, and I can't think of a better gift. Mattie was named, Matthew, because it translates into..... a gift from God. Mattie was a gift, but taken too soon. 

Quote of the day: Mental pain is less dramatic than physical pain, but it is more common and also more hard to bear. The frequent attempt to conceal mental pain increases the burden: it is easier to say “My tooth is aching” than to say ‘My heart is broken.’" ~ C.S. Lewis

CS Lewis was absolutely correct! People understand physical pain much better than they do mental ones. I had a full day of my usual tasks and things, but at 5pm, I was invited over to my neighbor's home. Mind you in order to attend this gathering, I had to take my parents out earlier and juggle things, just to get away for two hours. 

Rarely do I socialize now. Why? For several reasons. First, my days and evenings are full with caregiving responsibilities, the house, and the Foundation. But second and most importantly, is that having consistency and staying focused on my day to day chores provides safety, comfort, and spares me the commentary, input, and insights that others may have about my situation. It is very easy to judge what I should do now, or how I should be, but quite another thing if you are the one who has been hurt, abandoned, and left feeling like I have been a burden all my married life. It is a lot of emotional baggage to live with, to be betrayed by the one person that meant the most of me in the world, and on top of that I have been left alone to manage a house and my parents. 

After about two hours of socializing tonight, I had to remove myself. I could feel an overwhelming feeling coming over me. It is very hard for me to be around normal. Normal being happy families, people talking about vacations, and other life affirming events. I can no longer relate to these things. I certainly had trouble fitting in after Mattie died, but now, forget it. I am different and tonight was a stark reminder that I need to stay in my box, my bubble, in order to manage and cope. 

One of my other neighbors was at this gathering, stayed behind while I was leaving. She basically told the others that they really have no idea what I endure each day. In fact, she said what Vicki is facing is impossible and unfair, and definitely not what she deserved. I will spare you the details of tonight's conversations, but I had to leave because I was feeling unstable. It was like my head was caught in a tornado, with thoughts and feelings whirling around in my head and becoming unimaginable and impossible to cope. Truly by the time I got home, I did not know how I was going to make it through another minute. 

I headed upstairs and Indie followed me. As if she knew, something was wrong! After petting her, I returned downstairs, worked on thanking supporters for donating to Mattie Miracle and listened to Aija Kim's music (she is the wonderful piano player I have gotten to know from the hospital, where my mom used to take physical therapy sessions). I have now been home for two hours, and feel more stable. But I know this stability is fragile at best.