Saturday, May 17, 2025

Saturday, May 17, 2025

Tonight's picture was taken in May of 2009, at the Mattie March held at Mattie's school. At that event, Mattie and Bob, AKA the Magic Man, performed a magic show to hundreds of attendees. Bob was Mattie's head of school and Bob visited Mattie monthly while he was in the hospital and taught Mattie the art of magic. This trick was entitled the Peanut Butter Booger Trick (a name Mattie loved!). After Mattie died, Bob renamed the trick.... the Mattie Brown. Mattie was so happy that day and we thought as Mattie's treatment was coming to an end, we were going to work on rehabilitation and transitioning back to school that Fall. That never happened, as Mattie died four months after the Mattie March. 

Quote of the day: Hearts will never be practical until they are made unbreakable. ~ The Tinman, The Wizard of Oz

Every year, for the last 16 years, my friend Carolyn visits me the day before the Mattie Miracle walk. She always bestows me with flowers (in Mattie Miracle colors!) and all sorts of treats. Can you see this pastry in the shape of a lady bug? Mattie was into bugs of all kinds, so he would have gotten a big kick out of this sight! 

Carolyn and I met, as fellow moms at Mattie's preschool. Our children were in the same classroom. Now 21 years later, we are still bonded together. In fact, Carolyn has served at Mattie Miracle's raffle chair for all these years, which was a large undertaking when our event was live, as it took great coordination and legwork to pull off a raffle! 

Today I had the best of intentions to record a greeting, that I will post tomorrow on our social media platforms. It is a Walk Day greeting. Last year, I attempted to do a Facebook Live greeting and that was a disaster, so this year, I figured I would video record a greeting and then post it tomorrow. I worked on this for several hours this afternoon, and thought I captured a good quality recording. When I came home from taking my parents out to lunch, I listened to the recording and it was all garbled. When I tell you I almost lost it, I am not kidding. Technology is not my strength and I always relied on my husband to work out these details. Another thing that I have had to navigate on my own since he left. 

Any case, I sat back down this evening and recorded the greeting again. Since I do not trust my computer files, I immediately took the file and uploaded it to YouTube. I am giving you a sneak peek of the greeting tonight, but it will be posted tomorrow officially! I hope in four short minutes I highlighted why we walk, some information about childhood cancer, why our psychosocial mission is vital, and how grateful we are to our supporters. 

Naturally when I look at the video I notice two things about myself...... I am exhausted and my spirit has been broken. 

Click on the image to hear my Greeting to Mattie Miracle Supporters on Walk Day (May 18, 2025)

This afternoon while out at lunch, I received an email from a colleague of my dad's! It was such a special email, that I saved it to a file I have on my dad. What you may not know about my dad is he has always been a hard working, devoted husband and dad, who is always modest about his career and achievements. The email from my dad's friend highlighted my dad's amazing career and how my dad was respected by everyone at his company. Not that any of this surprises me, but it was so so touching to see my dad through someone else's eyes! Frankly I was so moved by the email, that I was crying in the middle of the diner. I couldn't help but to compare my dad to my husband. Mind you I always thought my husband was a lot like my dad, but one thing is for sure..... my dad under no circumstances would ever walk away from his family, his commitments, and those he loved. My dad is a class act and when people wonder..... why do I provide such daily care to my dad? The answer is easy...... because he deserves it. 

Friday, May 16, 2025

Friday, May 16, 2025

Tonight's picture was taken in May of 2009. This Sunday will be Mattie Miracle's 16th annual Walk, I can't help but be transported back in time. This photo was taken on the track of Mattie's school during the Mattie March. The event was coordinated by Team Mattie, to show the community's support for Mattie and us. Truly all our communities united..... schools, universities, businesses, and the hospital staff! This photo was taken minutes before we all started walking. At that moment in time, the hope was for a cure and we thought Mattie would be heading back to school that Fall. It is hard to believe that four months after this photo was taken, Mattie died. 

Quote of the day: Do not pray for an easy life, pray for the strength to endure a difficult one. ~ Bruce Lee

It was another busy morning juggling my dad, my mom's physical therapist and Steve. Steve has been helping me this week get my fountain back up and operational. He located a bigger water pump for me so that the fountain actually splashes and makes that beautiful water sound. Since my husband left, I haven't cleaned this fountain out for two years. I literally had kept it running for two winters, by putting a bird bath heating coil in it. However, that isn't good for the life of the pump and certainly doesn't help with the muck that builds up in the fountain. But honestly there are so many things I have had to address and learn as a single woman, that the fountain was low on the list of problems. 

Steve spent two hours today vacuuming out the old water, scrubbing out the muck, installing the pump, and refilling it with water. He has told me what I need to do weekly to maintain the water level in the fountain and now we have a plan for winterizing the fountain and then opening it up again in the spring. Knowing that I can turn to someone helps a great deal because I feel like I am living on an abandoned ship, with no lifeboats on most days. 

I can't believe that I am two days away from the Foundation's 16th annual walk. This is the second Walk I will be doing without my other half. Has it gotten any easier? NO! Not because I need the help running the Walk, but because of what the Walk symbolizes. It is hard to acknowledge that I carry Mattie's legacy alone, that I do not have a spouse to share ups, downs, and a future with, and it is simply a sickening feeling having to do greetings of our Walk supporters alone. We were always a tag team, we worked well together, and as so many people have told me..... we were the model couple that so many looked up to. 

It takes great courage, strength, and perseverance to carry on, to try to figure out everything for myself, and truthfully not to crack up. When I say this, I am not kidding, because like with Mattie's loss, I once again face something that makes no sense to me. May Mattie watch over me, as I will be looking for his signs on Walk Day. 

Thursday, May 15, 2025

Thursday, May 15, 2025

Tonight's picture was taken in May of 2009, at the Mattie March. This is the event Mattie's community hosted in his honor at his school. The fellow in red was the baseball coach. He came to fist pump Mattie and to give him a ball signed by every member of the team. The team was leaving the event to attend a game. Before the team left, every member said hi to Mattie and fist pumped him. It turns out the school's team won the baseball game. I heard the the coach attributed this to all of Mattie's fist pumps! 

Quote of the day: Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all. ~ Dale Carnegie

It is 9:15pm, and I have been jumping from one task to the other today. It started with taking my parents to their cardiology appointments. This is one of the many doctors they see every six months. Truly just managing this trip would be a full day for the average person. But that was only 1/16th of what I did today. I am worn out and absolutely disillusioned that I am missing my other half. A person I practically grew up with, raised a child with, and started a Foundation. Since Sunday is our Awareness Walk, it brings me no happiness to know that I run the Foundation alone, that I am hosting and coordinating this Walk alone, and in essence running a business, a household, and caregiving around the clock ALONE. 

I am grateful for all our Foundation supporters, who are helping us slowly reach our financial goal. Meeting our goal is crucial for us to fully fund our programs and initiatives. I welcome you to visit our Walk website. This week, I have also been pushing out content on our social media sites. I have received many positive comments about all that we have accomplished. One of our board members used to tell me that I am like the little engine that could. Meaning that I accomplish a lot with very little money. I guess that is what happens when you are passionate about something. You never give up. 

Wednesday, May 14, 2025

Wednesday, May 14, 2025

Tonight's picture was taken in May of 2009. This was at the Mattie March, the event Mattie's support community held in his honor on the School's track and field. This March was served as the roadmap for the Mattie Miracle Cancer Foundation's annual awareness walk. We took the model our community designed and we built upon it. In this photo, you see that Mattie was sitting in a wheelchair. Next to him (seated on Mattie's right) was his buddy Brandon (who was diagnosed with cancer around the same time as Mattie). The other adult was Robbie, a child life volunteer, and the child in front of Mattie was Zachary. Mattie and Zachary were best buddies from preschool. They were focused on a cup Mattie was holding that wasn't filled with water, but tent moth caterpillars. A spring tradition for Mattie, he loved to collect caterpillars, bring them home, feed them and then watch them convert into moths. Seated behind Mattie were his doctors and practically all his nurses from the inpatient unit! The medical brain power and compassion that was all around us that day was awe inspiring. A day I will never forget.  

Quote of the day: There are dark shadows on the earth, but its lights are stronger in the contrast. ~ Charles Dickens

As strange as this sounds, every morning while making breakfast, I look outside my kitchen window at this bubbling fountain. I look to see that the timer has turned on the water and that it is working properly. Whether it is working or not, is my first indication for how the day will go! I know, ridiculous! How could a fountain possibly determine how my day will go? As I always say, feelings do not need to be rational! This morning, I freaked out! The fountain wasn't on and I couldn't seem to turn it on either. I checked my circuit breakers, I checked the GFIs outside, and even checked the fountain timer. Everything seemed to be fine, except it wasn't working. This fountain is the one major feature of our backyard that I love. There are so many things around the house that I have NO IDEA how they work. These were things my husband managed and it never dawned on me that one day, he wouldn't be around to help me.  

I think because my life is in shambles, I take it personally when some things are not thriving. For example this weekend, I took my hibiscus plants, which I wintered inside, into the backyard. When I tell you that these beauties are struggling I am not kidding. These plants are my tribute to Sunny (which I purchased last spring), because when they bloom, they have a glorious yellow sunshiny flower. Any case, I am trying to nurture these plants back to health. But it is touch a go. Hibiscus plants can be very temperamental. So between the hibiscus plants, a failing hydrangea that I transplanted outside and now the fountain, I viewed all of this as a failure on my part. Of course this is not logical, but that was how I was feeling. 

Steve, the fellow that helps me with all my outside projects, came over today. I had a scheduled appointment with him because several landscape lights weren't working. When Steve rang my doorbell, I opened the door, and he could tell I wasn't happy. He immediately asked me what was wrong. Keep in mind that Steve is well versed in many of the issues I am facing, as he is facing his own personal struggles. Any case, I told Steve about the fountain. Now mind you he wasn't visiting for the fountain, but guess what..... he said, THEN IT WILL BE THE FOUNTAIN that we will address first! When I tell you that this man is a God sent, I am not kidding. 

Steve diagnosed the issue. It was the pump which died. He put in a temporary one, but will order a bigger pump and install it on Friday. Mainly because I do not like the fountain as just a bubbler (which is how it is intended to be). I prefer it as an actual fountain, where you can hear the water splashing and making noise. 

Before Steve left today, he thanked me for listening to him chat about his life, his ups and downs, and then said to me..... I can't imagine anyone leaving you, you are just such a thoughtful and compassionate person. All I can say is Steve's comments have remained with me all day.

Tuesday, May 13, 2025

Tuesday, May 13, 2025 -- Mattie died 794 weeks ago today.

Tonight's picture was taken in May of 2005. Mattie was three years old. That weekend we took him to one of our favorite places in DC, the Aquatic Gardens. These Gardens are like the best kept secret in the District. They are truly peaceful, beautiful, and the Gardens attract amazing bird life. As you can see from this photo.... Mattie was all business. He was walking around and looking for birds, frogs, and turtles!

Quote of the day: When you put love out in the world it travels, and it can touch people and reach people in ways that we never even expected. ~ Laverne Cox

Given the intense rains and wind, I couldn't take my parents out today. It just would have made no sense. Because I would have gotten soaked addressing each of their needs to and from the car. Being home a whole day is challenging at best. In the midst of the usual chores, I had to call my health insurer. I was scheduled to get an MRI this Friday (at an outpatient radiology center), until I learned that my insurer approved the scan at the hospital. Since I prefer having my scans done at the hospital, I was thrilled for the approval. I called the hospital and scheduled my MRI there and canceled my Friday appointment at the outpatient radiology center. However, thankfully I had the wherewithal to call my health insurer. I did this because I do not want any billing surprises. Sure enough my health insurer said the prior authorization letter in my portal was not accurate, as my scan was not approved at the hospital. I literally was arguing with four different people at my health insurer company because wouldn't most patients believe the preapproval letter their insurer gave them was accurate? I have just gotten cynical and trust nothing, so I verify, and re-verify. Thankfully I did! By the time I got off the phone with the health insurer, I thought my head was going to split open. I could feel my blood pressure was high and I felt like a squirrel locked in a cage. 

When I have that feeling.... outside I go! With all the rain and wind, I picked up countless fallen branches from trees! Then later today I had a phone call with a Foundation supporter. This is an individual I do not speak to often, yet it was such an inspiring phone call. 

This supporter has been struggling with her own health issues for years. I will not be sharing her details, as this is her story. But suffice it to say, though her issues and mine are different, as hers are physical and mine are emotional, we share many commonalities. Grief and trauma look very similar regardless of the origins of the issues. I found this woman absolutely inspiring because despite her physical limitations and struggles to regain her health, she continues on. She pushes herself and never sits long in the darkness. Our commonality is we find great therapy in doing tasks and helping others. As I said to her, the best medicine for healing, is helping others. I truly believe dwelling in trauma and loss is counterproductive. You can only sit there in small dosages, because if you really sit in it, it will consume you and then it will be close to impossible to recover and stabilize. 

What this woman wanted to convey to me is that anyone and everyone who knows Mattie Miracle, knows that I am the heart of Mattie Miracle. That I am the one who has run it for years and she said given her years consulting with non-profits, why Mattie Miracle is successful is because of my philosophy. Which is that I make it a point to connect on some level to each and every person affiliated with the Foundation. She is spot on! As Mattie Miracle's president, I have always made it my business to acknowledge each and every contributor and to get to know people who I interface with personally. I do not do this because I have an ulterior motive, I do this because I genuinely care. 

I know this about myself and my leadership style, but it is always fascinating hearing it through the lens of someone else. When we signed off with each other today, I think we both felt better about the day. As I always say..... each of us has the power and ability to make someone's day better and brighter, or worse and painful. Her phone call enabled me to be grateful for my health and thankful that I have the strength and ability to manage my parents, the house, and the Foundation. I do not take the gift of health EVER for granted. I learned that early on with Mattie's diagnosis. But I also heard today the importance of this woman's husband and children in her life. They are her ultimate supports! NO ONE is going to support you like your spouse and children. You may disagree, but given my insights with what it takes to be a caregiver, I speak with confidence. Not having Mattie or my husband, is a daily sobering reality check.  

Monday, May 12, 2025

Monday, May 12, 2025

Tonight's picture was taken in May of 2009. Mattie presented me with a clay vase that he made in the clinic, that was filled with tissue paper flowers. Mattie had been working on this project for weeks. But ironically I did not know exactly what he was doing, nor did I realize it was a Mother's Day gift. This vase means a great deal to me and to this day, it sits in our family room. Whenever I see it, which is daily, it takes me back to this moment in time. When Mattie's art therapists were working with Mattie, little did I realize that all of his art pieces would serve as part of his legacy. Art was a God sent for us in the hospital, as it engaged Mattie's hands, eyes, mind, and spirit. Mattie's artistic creations provided him a safe outlet in order to express feelings and fears. Now Mattie's art is therapeutic for me, as it keeps his memory alive. 

Quote of the day: Some things in life cannot be fixed. They can only be carried. ~ Megan Devine

It is now 10:30pm, and the day was a blur! When I tell you that I don't stop moving from the moment my feet hit the floor in the morning, I am not kidding. This morning, after dropping my dad off at his memory care center, I took my mom into the city for her hair and nail appointment. During this visit, I also got my hair cut. That may not sound like a big deal, but it actually is! I haven't been cutting my hair on a regular basis for years. Now I have been educated that this isn't a good idea, as the hair needs to be cut to remain strong and healthy. Sitting still can be hard for me, but the woman who works with me and my mom is a peach. I learned a little about her and her family today. For me, getting to know people personally is important. Service of any kind is NOT just a transaction for me, but it is a way to build a relationship. Relationships are important to me, and always have been. Which is ironic, given what has occurred to one of most precious relationships in my life. 

On top of everything else I juggle, Mattie Miracle is knee deep into fundraising season! It is hard to believe that I have been running the Foundation for 16 years! Prior to my husband leaving me, I had more flexibility and could do more fundraising. There is only one of me and there are days I need to cut myself some slack, as I care for two people 24/7, manage a house, juggle bills, and keep Mattie's Foundation up and running. I will never understand how anyone could walk away from a 35 year relationship without looking back, nor can I understand how Mattie and me can be easily forgotten. All I know is this behavior is against every core value and principle I hold dear.

Tonight after cooking, serving, and cleaning up dinner, I had to go outside to throw out garage and take it to the curb. While out there, I noticed more issues with our outdoor lights! So literally I went into the bushes and thank goodness I did. One of the lights had frayed and I literally could smell smoke. I ran inside, got a flashlight and pliers and pulled the light bulb out of the fixture. Thankfully Steve, the fellow who helps me outside, is coming on Wednesday, because I have a running list for him. Now if I could only clone Steve!  

Sunday, May 11, 2025

Sunday, May 11, 2025

Tonight's picture was taken in May of 2007. It was Mother's Day and Mattie was five years old! Mattie was crossing his arms over his heart to indicate to the camera that he loved me. Mattie may not physically be present, but his love and spirit remain alive within me. I remember this moment like it were yesterday and I thought we would have many more Mother's Days together. I now face Mother's Day without my son and my husband. I carry Mattie's memories and legacy alone, and that notion is a sobering reality and loss.

Quote of the day: I can think of no mother more deserving than a mother who had to give one back. ~ Erma Bombeck

Do you know the history of how Mother's Day got started in the US? Here's a synopsis of the day. It started from a woman's great loss! Typically how all amazing movements begin..........................................................

Mother's Day in the U.S. evolved from various initiatives, but its official establishment is largely credited to Anna Jarvis, who, after her mother's death in 1905, sought to honor motherhood. Anna Jarvis organized the first Mother's Day celebration in 1908 and campaigned for national recognition, which was achieved in 1914 when President Woodrow Wilson proclaimed the second Sunday in May as Mother's Day. 

Anna Jarvis organized the first official Mother's Day celebration in Grafton, West Virginia, in 1908, with a church service and a similar event in Philadelphia. While Anna Jarvis originally envisioned a day of modest celebration and personal expressions of gratitude, Mother's Day quickly became a commercial holiday with traditions like sending cards, giving gifts, and enjoying meals as a family. Anna Jarvis was reportedly unhappy with the commercialization of the holiday and its association with fundraising by charitable organizations, as she envisioned a more personal and meaningful celebration. 

I strongly believe in Mattie signs. I have had three! The first.... last night, while sitting in bed, I could see a bright light through my blinds. It was a beautiful Mattie moon shining in on me. The second.....when I got up this morning, the first thing I did was open my bedroom blinds. What did I see? A beautiful red cardinal right outside my window. I literally looked at that bird and said..... Thank you Mattie for remembering today! That red bird gave me the confidence to get through the day and to know that I AM NOT ALONE. The third....... as I was driving my parents to brunch, along the side of the road was a mama Canadian goose with her goslings walking in tow. Immediately what flashed through my mind was what Mattie always said to me whenever he saw an animal mother with her babies..... that's you and me! Indeed, that goose and goslings today were meant to be seen. MOON, CARDINAL, and GOOSE/GOSLINGS! These were my Mother's Day gifts from Mattie, showing me that he walks alongside me, is watching everything that has transpired, and unlike others..... he NEVER walks away. Even cancer can't divide or destroy our bond. 

While working in the kitchen today, my doorbell rang. I wasn't sure who it could be. When I went to the door, this man handed me this gift from my dear friend. A friend WHO I HAVE NEVER MET IN PERSON, yet we have a special bond. I wanted to tip the fellow who delivered this treat, but he insisted... NO this was my day! Any case, who couldn't smile seeing cheesecake and strawberries!? 

My mom and I received many gifts in honor of Mother's Day, and I am grateful for every supportive word, gesture, and gift.