Wednesday, July 8, 2026

Wednesday, July 8, 2026

Tonight's picture was taken in July of 2007. Mattie was five years old. Back then, childhood cancer was not on my radar scope. I refer to that time in my life as, being in Disneyland! By that point in time, Mattie loved the water and playing in it. We had smaller kiddie pools on our deck in the past, but Mattie requested a larger one. This pool may not look it, but it literally took up about half of our deck space. Nonetheless, if it brought happiness to Mattie and he got use out of it, I was all for it. This was an unusual photo, because typically Mattie would throw all sorts of toys in the water with him and then create elaborate play schemes. So the fact that it was just Mattie in the water, captures my attention.

Quote of the day: If there was some way of knowing which boys were likely to turn out to be decent men, boys that could love us back as passionately as we felt we could love them, then we could banish the likelihood of divorce and unhappiness to a statistically unlikely outcome. ~ Belinda Jeffrey

This morning I was trying to get my dad ready for his memory care program and my mom set up for her physical therapy session. My mom has been working on and off with a therapist for about two years now. This therapist also works with my dad. I found this home health agency in 2022, after my dad had his pacemaker placement. This company has been working with me for years now. The beauty of this long-term connection, is they see the changes in my parents over time. Today, the therapist explained to my mom the changes he has seen in her balance and gait over the last two years. I think that was sobering for my mom to hear. My mom used to love to walk, and she still does, but when outside the house, she will only walk if she is holding my hand. I manage, but this is complicated when also trying to care for my dad. There is only one of me and I only have two hands. 

This afternoon, my friend who I met virtually when I became separated, sent me a self assessment. We live in different countries, yet we try to support one another. It is very hard to explain to someone who isn't living our life, the devastation of being divorced. Divorced, not by choice. 

The self assessment is longer than this, but these two pages were the most meaningful to me. When I looked at this check list, I would say.... I am proud of myself.... I am doing everything on this list. I say proud of myself.... because given all that I balance everyday with my parents, managing the house, finances, the Foundation, and the emotional toll of a divorce, it would VERY easy to let my health go by the way side. But I am very aware of the fact, that if I am not physically healthy, I can't be a caregiver. So I believe that is my biggest motivator. I have even begun incorporating 30 minutes of aerobic exercise to my daily routine. I have been at this for a month now. Naturally I am curious to see if this exercise impacts my cholesterol level (which will be reassessed at the end of July). 

The next part of the assessment was a psychological component. For the most part, I am doing fairly well in this department too. I admit I don't have time for hobbies and forget about vacations (I DON'T even remember what that is like, since I haven't been on a vacation since 2021..... I have been caregiving non-stop for five years now. But without my other half, I have NO INTEREST in travel!). I am big on expressing myself and do that with a handful of trusted people and of course on this blog (thank you!!), and when in doubt and all else fails.... I turn on a Hallmark movie. It takes my mind off my issues and transports me into a happier and more beautiful world, where people are kind, loving, and there is always a HAPPY EVER AFTER!  

The social part of this assessment was a bit harder for me. Yet even with that said, I have learned to ask professionals for help with managing finances, legal matters, and house issues. In addition, I am in touch with a small network of people and do meet new people weekly because I am actively taking my parents out. These outings causes me to interact with people in restaurants, hospitals, doctor offices and so forth. It would be very easy to hibernate and shut the world out given how I am feeling. After all, the greatest trust and faith I had in someone, was severed. Therefore, that leaves me in a position to evaluate and be skeptical of everything and everyone. It takes great effort to fight those feelings, and to be true to who I am, and not be defined by my divorce. 

Tuesday, July 7, 2026

Tuesday, July 7, 2026 -- Mattie died 853 weeks ago today.

Tonight's picture was taken in July of 2008. My parents were visiting and we took Mattie to one of my favorite places.... the Washington, DC Aquatic Gardens. These Gardens are off the beaten path and truthfully if you drove through the neighborhood of DC, you would never guess that this piece of paradise was just around the corner. We loved going there every July, when the lotus flowers were in bloom. What is hard to believe is that just weeks later, Mattie was diagnosed with cancer. 

Quote of the day: It is hundreds of tiny threads of memories, which sew people together through the years. Despite, their mental separation they stay woven into that tapestry out of habit, emotion, obsession or fear. ~ Shannon L. Alder

Tonight's quote really speaks to me, because I absolutely agree. When you have grown up and lived with someone for decades, they do become part of your tapestry. That is the beauty of a marriage, you are two people who integrate in heart, mind, and spirit, forming one unified bond. When that half of yourself gets carved out, it is disorienting. I have a friend, who I met in a support group (the same group, I left after two sessions), and we communicate daily. We live in completely different countries and yet our lives are in parallel. As we say all the time.... we are moving about, we are productive, we are accomplishing tasks and things, but we feel absolutely empty. Hollow! Being busy and productive, doesn't equate to feeling connected, being happy, or having joy in life. Instead, the more meaningful aspects of life, that make life worth living, come down to our interconnections. You could uproot me, put me on a space craft and dump me on the moon, and the trauma of what happened to me would follow. It becomes very hard not to be defined by divorce, as the consequences are all consuming at times. 

Changing gears, yesterday, as I was driving my dad to his memory care center, I noticed an ambulance and fire truck at my neighbor's house. I could see someone coming out on a stretcher. I literally opened my car windows, pulled over to the curb, and told my dad that I would be right back. My neighbor's husband was rushed to the hospital and I stopped to chat with her and lend support. As I told her, I maybe busy, but she is never alone. She can call me anytime.

This evening, I had a chance to connect with my neighbor. She wanted to thank me for moving her trash cans back to her house (as it was trash day) and then said something that surprised me. She said.... "You (meaning me) deal with crises and issues every day, and tackle each one with little to no help. You are strong and resourceful. But I am not like you!" Early on, I connected this neighbor to my dad's home health company, and today she decided to call them to ask for some help with things. Again, she wanted to thank me for sharing resources and for being there for her. 

My point to all of this is it is amazing to hear how I am perceived by others. I haven't reported on the blog everything I faced when I became separated in 2023, but what I do know is the average person would have cowered in the corner, and collapsed. I now have a much greater understanding for why people die by suicide and it takes great courage, strength, determination, and faith to find a way forward every day. My life has been shattered and though others may view me as strong and resourceful, which I acknowledge, I miss having a partner in crime. A partner who shared decades with me, and who also endured the beauty of Mattie and the heartbreak of losing him.  

Monday, July 6, 2026

Monday, July 6, 2026

Tonight's picture was taken in July of 2007. Mattie was five years old. On that day, he was invited to his preschool friend's birthday party. Kate had the party in a gym and a gymnastics instructor did all sorts of fun activities with the kids. Mattie had a wonderful time, he loved being included, and he truly felt right at home with his preschool buddies.

Quote of the day: There are some trajectories you cannot change, no matter what you do. ~  Jodi Picoult

As I was getting myself ready this morning, I was listening to the radio and hearing about spontaneous street parties and sing-a-longs that took place on July 4th. There were storms, including lightning, on Independence Day, which caused the whole National Mall in Washington, DC to be evacuated. It was unclear whether the show and fireworks would take place or not, so uncertainty during such a massive holiday event could have led to all sorts of reactions in people. Anything from anger, disappointment, or in so many cases..... spontaneous creativity that united people together. I truly loved what I was hearing on the radio, so much so that I turned to YouTube to try to find videos capturing these wonderful circumstances. 

We live in a complex world, where we tend to see the worst in people highlighted, promoted, and constantly discussed on social media. You just can't get away from it. Which is why when I hear stories that are positive, that bond people together, and capture the beauty of the human spirit, I feel it is worth calling it out!

To get onto the National Mall, required every participant to get screened and to go through magnetometers. It took people hours to make it through these check in lines, so you can imagine having to leave the area (after going through all of that) because of weather, was not on anyone's to-do list. Nonetheless, here's the beauty of the human spirit.... a spontaneous street party took place on Pennsylvania Avenue. This 9 minute video below captured it, as the video goes on, you will see that almost everyone was participating and getting into the festive spirit. 

As I watched this video, I thought to myself..... what would I have done in such a situation? For me the response differs greatly from before my divorce to now. I freely admit that after Mattie died, I avoid crowds at all costs. Crowds of all kinds. I do not like being confined, trapped, or around loud noise. Therefore, even if I wanted to go to such an event on the National Mall. I wouldn't! But now, I am a shell of my former self. At one time, I would have had the desire to have fun, to jump around with others to music, NOW I can't see myself doing this! Divorce impacts people differently. For me, I did not see it coming. I viewed myself in a loving and committed relationship, so for me, on any given day I feel as if someone removed my skin. The world is now more painful to traverse than it was three years ago. Nonetheless, regardless of how I feel, I can still appreciate what I saw in this video and it made me smile. 

Some people danced in the streets, but many others headed inside Smithsonian Museums to shelter in place during the storm. Hundreds of people landed up at the Department of Agriculture. I have to admit, even living in Washington, DC for over 20 years, I have never been inside that building! So it was amazing to see the wide open atrium, which reminded me of the Building Museum or the Old Post Office Pavilion in Washington, DC. If you look at the video below, you will see countless people all bunched up next to each other and spontaneously singing together..... God Bless America.  

The video:

https://www.facebook.com/watch/?v=2205843443505110

Somehow seeing these videos reminded me that the human spirit lies within all of us. The goal is never to lose sight of this inherent gift. 

Sunday, July 5, 2026

Sunday, July 5, 2026

Tonight's picture was taken in July of 2004. Mattie was two years old and this was his second trip to the Outer Banks of North Carolina. Year two was a night and day difference from the previous beach trip. By year two, Mattie loved the sand, he enjoyed playing and building in it, and the ocean waves crashing onto the shore did not scare him as much. That year I got to see my little engineer at work, as he was learning the art form of building and decorating sand castles. I truly thought we would have many, many more family trips together. But that wasn't meant to be, and instead I cling to photos and each and every memory. Who knew that the only thing I would have left of my son are THINGS! 

Quote of the day: Someone can bless you one day and walk away the next — not because you failed, but because they couldn’t hold the weight of the relationship they helped build. ~ Andrew-Knox B Kaniki

When we lived in Washington, DC, we could easily see the National Capitol Firework show from our apartment complex. We literally walked outside our building to the main street, Virginia Avenue, and we did not have to fight traffic or crowds. It was one of the greatest perks of living in the heart of the city. Two blocks from the Lincoln Memorial! I wish that I still lived there, I wish we never left, I wish we never moved, and I am quite certain if we never moved, my life would not look the way it does now. I truly wish last night, that I could have walked outside my home to see the America 250 Firework show. 

With typical Washington, DC humidity and heat, we had storms last night, including lightning. People were cleared from the National Mall for close to three hours, delaying the entire show. My mom really wanted to see the fireworks. At first, I was going to tell her forget it, but then I thought to myself........ NO, America's semi-quincentennial birthday is a milestone. It is historic! So I decided to take my dad upstairs at 10pm, as he was already very sleepy and out of it. I needed to get him up the stairs and moving while he still could. Once he was safely in bed, I went back downstairs and my mom and I watched the TV until 1am. 

The firework show featured 850,000 fireworks shells launched from 10 sites. Last night's show made the Guinness World Book of Records, and I can totally appreciate why! It was a show like no other I have ever seen in my life. I can only imagine what it sounded like in DC!

The pictures of the event were just stunning.

If you haven't seen the show, I included a YouTube of this 38 minutes firework extravaganza! I am not sure what I was more amazed by..... the fireworks or the incredible musical talent of the Joint Armed Forces Orchestra (members of the U.S. Air Force Band , "The President's Own" United States Marine Band, and the U.S. Army Band "Pershing's Own). These musicians can do it all, everything from traditional patriotic music to pop music and the four military members who sang  during the fireworks show were down right gifted.

Saturday, July 4, 2026

Saturday, July 4, 2026

Tonight's picture was taken in July of 2003. Mattie was a year old and it was his very first trip to the Outer Banks of North Carolina. This was a place we absolutely loved and we wanted to share it with Mattie. My former in-laws came with us on this trip and it was their first visit to this amazing barrier island. This was Mattie's first and last visit to the beach on that trip. The ocean scared him and Mattie did not like the feeling of the sand on his feet. Nonetheless, it is one of my favorite July 4th photos! Mattie's little hands and fingers were like radar scopes. They would take in information.... he would flail out his fingers, fan them around, and then bring them back into a fist position. Almost like an octopus using a tentacle to capture something and bring it back to the core! 

Quote of the day: It was having everything I had counted on collapse so suddenly, forcing me to let go of the idea that I could control outcomes. It was the loss of my identity as a wife, my identity as part of a married couple. I had to get comfortable existing outside the norm, outside of what had once been my ideal. ~ Belle Burden

Since my divorce, each July 4th I send this photo to my former in-laws. They visited us in 2000 and we celebrated the fourth of July together. We were holding up glow sticks, each of us forming a number...2000! Where we lived in the city, we could literally walk out into our commons area and see the amazing National Capitol firework show. It was a magical moment which we remember like it was yesterday!

Holidays and milestones, make loss even more pronounced than it normally is each day! Today, I looked through many of our July 4th moments, and all I can say is..... how is this possible??? How am I divorced? We shared a lifetime together since age 19! Like with any trauma, my life has stopped from the movement of my separation, September 23, 2023, and I have yet to stabilize and find a way forward. I miss my life the way I used to be, or I should say the way I thought it was! 

My other half planted countless stargazer lily bulbs in the backyard in 2022, because he knew I loved them. They bloom every July 4th. Today I made this arrangement for the general manager of our local diner. She and her staff look after us so beautifully, that I wanted to do something nice for them today. When I got to the diner, I placed this arrangement on their front counter. I can't tell you how many people went up to these flowers to touch and smell them! I was told I made a lot of people happy and the all the staff let me know how much they love me and my parents. 

I have hundreds of lilies and I have many bouquets in my house currently. But instead of the rest of these beauties going to waste, I wanted to share them!

Friday, July 3, 2026

Friday, July 3, 2026

Tonight's picture was taken in July of 2009. Mattie was home between hospital stays and that weekend we decided to scrape paint off our deck and repaint it. As you can see, Mattie wanted to be a part of the process! He put the paint brush into "Curious George." That was the name we gave Mattie's left leg. Why? Because it was the only intact limb that had received no surgery and Mattie used his left left and foot almost like a arm and hand! He would take that foot and go into his nurses' pockets! So it was no surprise to me that if Mattie wanted to paint, he wasn't going to use his hands!

Quote of the day: In order to move on, you have to want to let go. ~ Kevin Darné

Though my dad's memory care center was closed today for the fourth of July holiday weekend, his nurse came over at 10am. Which meant in order to get my dad up and downstairs for that appointment I had to get up at 6am. Medicare plans on discharging the nurse next week, but keep in mind that my dad's pressure sores are not healed. In fact, it is a vicious cycle of the sores closing up and then re-opening again. So as of next week, I will be on my own managing these never ending pressure sores. I can't tell you how many hundreds of dollars I have spent on pressure sore foam bandages. Medicare's supply is ridiculous. They think one bandage is good for an entire week, as they deem them water proof bandages. All I know is no matter how well I apply the bandage, it constantly moves and comes off. So on a good day I can go through four bandages and on a bad day, try 8 in one day! So this one bandage allotment is insane. 

Once the nurse left, I got my dad situated in his recliner, and I proceeded to do laundry, write checks for the Foundation, and then I started a continuing education course on dementia that will count toward my licensure renewal. I live dementia care 24/7, but I wanted to see what the educational content looked like and to learn more about the stages, the causes of dementia and the psychosocial interventions that can be used to help relate to a person with dementia. I got to reading up to page 10 and then that infamous 1-800 number flashed on my phone. This has become a number I absolutely can't tolerate! If you haven't been following along on the blog, then let me clue you in. The 1-800 number I am referring to belongs to my mortgage agent. 

I have been at this mortgage assumption since May. I am stressed out beyond belief and some times I wonder if the left hand of this company talks to the right hand. Yesterday, I received another email from the company, demanding more information. I supplied it and left my mortgage agent a detailed voicemail, along with a detailed email. NO ONE READS of LISTENS TO THEIR MESSAGES. Today he called me going through the same stuff I supplied yesterday, except with a bit of a twist. My patience is dwindling and yet I have to keep it together because I have to assume this mortgage if I want to continue living in my house. Moving with two 90-year-olds would be truly impossible and bordering on inhumane, as change especially for my dad is confusing. 

If you read yesterday's blog, then you know I am losing my health insurance. Cigna is no longer offering individual plans in the state of Virginia. The way Cigna explained it to me is that they are covering NO ONE in Virginia as of December, so not just people with individual plans, but everyone! I made the mistake yesterday on searching on the exchange, like Cigna recommended I do! BIG BIG MISTAKE. Some how just trying to get information triggered a cascade of phone calls with healthcare insurance agents. Yesterday I received 40 cold calls and today 30! I am not answering the phone, after talking to one agent yesterday. I am beginning to hate the phone altogether. 

This afternoon, I took my parents out to lunch. It was another winner of bathroom day with my dad. The restaurant was crowded, as everyone was inside in air conditioning trying to avoid the 100 degree temperatures outside. I had no choice but to take my dad to the ladies room with me. While in there, I ran into another woman, who was a caregiver at one time to her in-laws. She was very patient as we were taking up a lot of space by the sinks, but we concluded that we are both unique people, as not every child cares for a parent 24/7. It is fascinating how caregivers just get one another! 

Thursday, July 2, 2026

Thursday, July 2, 2026

Tonight's picture was taken in July of 2009. Mattie had completed 9 months of chemotherapy (as well as had two limb salvaging surgeries, a sternotomy, and experimental immunotherapy treatment) and our hope was that we could focus on Mattie's physical rehabilitation, so that he could return to school in the Fall. That of course never happened, as a month later, we learned that Mattie's cancer metastasized. 

In this particular photo, we were home from the hospital and we were working on building a Lego Taj Mahal! This was a challenging and a multiple day project. Mattie loved it! To this day, I still have one of the turrets from this Lego set on display in my office!  

Quote of the day: He understood divorce in a macro way, of course. But he had not yet adjusted to it in a micro way, in the other-side-of-the-bed-being-empty way, in the nobody-to-tell-you-were-running-late way, in the you-belong-to-no-one way. ~  Taffy Brodesser-Akner

I truly can't make up my day to day existence. I ran around doing all sorts of chores today, including grocery shopping. When I got home, I dealt with putting things away, doing the laundry, and paying bills. In the midst of this I addressed several questions from the mortgage assumption company. This process is down right mind numbing. I am not sure why it has to be this difficult, as my parents and I have been paying the mortgage since my separation in 2023. Therefore, seriously give me a break! The assumption process is as labor intensive as refinancing. The latest debate is over bank statements I am supplying them. They keep arguing that these are snapshots and not full statements. I even called our bank to double check that I am sending the right documents, and they confirmed I was indeed sending the correct statements. My bank knows this but the mortgage company doesn't! 

Any case, mid-day, I took my mom out! Don't you know while I was ordering teas and snacks for me and my mom, my phone rang and it was my mortgage agent. Since my phone was on silent, I didn't hear the call, but could see the message as soon as I sat down. As I mentioned in a previous blog posting, whenever I see that 1-800 number, my heart practically jumps out of my chest. All I know is I can't catch a break anywhere. 

I decided about 90 minutes later to head home with my, so I could return the mortgage agent's phone call and also send the financial paperwork to our CPA for the Foundation's annual audit. In the midst of doing all of this, I also picked up the mail. Another thing I have come to hate! No good news comes in the mail. I never know what nightmare will be greeting me. Today was no different. I got a letter from Cigna, my health insurer. 

I learned that my health plan is getting discontinued on December 31, 2026. I can't tell you what that did to me today. I worked very hard getting this individual plan in 2025, when I was no longer covered through my marriage. It wasn't easy getting a plan in general based on my zip code and the fact that I am not working. If you don't bring in any money, you can't even apply through the Affordable Care Act. The only thing I would qualify for is Medicaid. Fortunately, I have my parents, and they are helping me afford a private plan. Given all the research I did previously, I was scared that I wouldn't find an insurer for 2027.

I called Cigna, and I learned they are pulling out of the state of Virginia. So it isn't just my plan, it is ALL plans. I asked them what I should do to find another insurer, and they recommended I look through the Virginia Marketplace (which is the ACA), just to see what insurers cover my geographic location. 

So I did that, but in the process I seemed to get connected to a health insurance agent. This is where my afternoon took a turn for the worse. I will NEVER make this mistake again, as my phone has been ringing off the hook all day and evening. Agents trying to work with me to sell me a health plan. Since they basically work for the insurer themselves, and are salaried employees, their incentive is to sign me up for one of their plans. I only spoke to one agent, which was more than enough. He started off nicely, but then wanted specifics about me.... such as my height, weight, etc. I basically said to him.... I don't know you, I don't know who you work for, and I do not feel comfortable discussing anything about myself with you! He then said, he was there to help me and these are questions all insurers will ask me. Maybe, but I rather know I am talking directly to an insurer. He then proceeded to tell me that I was overpaying for my current plan and that I could get plans now without any deductibles.

I am not sure if he knew who he was talking to, but I know that the types of plans I want to have always have deductibles! So I am sure there are wonderful health insurance agents out there, but I know this model doesn't work for me. I do not want to be pushed into a decision, I do not want to be pressured, and I most certainly do not want someone telling me what is good for me. I am done with that! So I thanked him and hung up, and have ignored all the other calls and text messages I got from other agents today. 

I then decided to reach out to every major health insurer that I knew of that works with my core team of doctors. This landed me up with Anthem. I have had Anthem in the past when married, but unfortunately couldn't get an Anthem plan in 2025, because they weren't covering my geographic location. Any case, I called and spoke to a lovely intake coordinator named Amy, who then connected me with Pam. Two amazing women. Pam commended me for taking a proactive approach to finding a plan and she said she wished all her customers were like me. Health insurance is vital and this is not something I will ever forgo, because I know the expense of all medical care and procedures. Any case, Pam recommended that I wait to get closer to open enrollment in November. But she did one more step for me, she added me to her call list in October, so we can start going over plans then. I now have her work email and direct phone number. So though I am deeply upset to say good-bye to my health insurance plan, I am very grateful that I got connected to a person like Pam. 

What I do know, is I am very, very, very tired of constant stress, panic, and crises. While juggling phone calls, I am dealing with caregiving, the Foundation, the cat, and trying to make dinner. Somewhere along the line today, I said..... I miss having a husband, someone to share life's ups and downs, and someone who has my best interest at heart. It is daunting to be solely responsible for everything and to not have a peaceful moment in over five years. 

Wednesday, July 1, 2026

Wednesday, July 1, 2026

Tonight's picture was taken in June of 2009. Mattie was at his second party that year, to celebrate his 7th birthday. My friend Christine hosted an amazing and memorable party for Mattie. The party  had a reptiles alive show, and as you can see Mattie was having an up close and personal visit with a snake. I, on the other hand, was as far away as possible from this snake. I hate snakes, I don't even like garter snakes. Snakes freak me out, but as you can see Mattie was intrigued! I will never forget this moment in time, as at that point, we thought Mattie was stable enough to return to school in the Fall. Which is ironic, because two months later, Mattie's cancer had metastasized throughout his body.  

Quote of the day: Losing a mate to death is devastating but it's not a personal attack like divorce. When somebody you love stops loving you and walks away, it's an insult beyond comparison. ~  Sue Merrell,

Every summer my friend Ann's cousin visits her from Boston. In the past, I had the freedom and flexibility to meet up with them and take JP to lunch. But since I moved to this house and started caregiving, my life has taken one turn after the other for the worse. 

Since I can't meet up with them, they came over to the house today and we swam and had lunch together. This was possible because my dad was at his memory care center. This gathering may not sound like a big deal, but for me it is! I rarely do anything social now, as I just can't handle it physically or emotionally. 

I loved seeing JP in one of our Mattie Miracle Walk t-shirts from 2012! I work so hard maintaining this pool, that it was lovely to be to go into it today. Mind you it was close to 100 degrees, so the coolness of the pool truly made this day manageable outside. But I would have to say that there is something therapeutic about being in water and I wish my other half were still here. Because when you are inundated with caregiving 24/7, it would be lovely to have a spouse to look after me, to have my best interest at heart, and to force me to stop doing tasks, and just be. 

Me and JP! JP wanted to pick a flower in my garden and give it to me. So we walked the garden and his picked the Mandeville flower that you see in my hair. 

Our walk through the garden!

Tuesday, June 30, 2026

Tuesday, June 30, 2026 -- Mattie died 852 weeks ago today.

Tonight's picture was taken in June of 2009. Mattie was recovering from a sternotomy, in which his chest was cut open to remove 9 lung tumors. Though that sounds like a very difficult surgery, it was a lot easier to recover from compared to his limb surgeries. Nonetheless, Mattie needed oxygen and was frail. His lung surgeon was an absolute LOVE! He gave Mattie that little R2-D2 toy from Star Wars that you see here! Mattie absolutely loved that gift and everything about this surgeon was unique. In that he had pre-surgical meetings with us and the care team, and he visited Mattie personally every day in the hospital while recovering. He did not send a resident or someone from his staff. In addition, do you know that this surgeon contributes EVERY year to Mattie Miracle? So that is 17 years of contributions. A very special doctor indeed.

Quote of the day: If you looked round the rooms, you wouldn't think there was anything missing. But it's like one of those Spot the difference cartoons in a puzzle book. The changes are so subtle, yet glaringly obvious once you've seen them. A photo missing here, a cup there. A heart a bit more broken than it was before. ~ Liz Kessler

Two years ago, my primary care doctor told me I needed to see a breast care specialist, as she felt I was high risk for breast cancer. I had to admit that when my doctor said this, I thought she was being an alarmist. Nonetheless, I listened and became a patient of the specialist she suggested. So once as year, I see this specialist, and throughout the year I get a mammogram and then six months after, a MRI. I have been told I have a 40% chance of getting breast cancer. A delightful percentage. 

In any case, last night, I got a text message reminder that I was scheduled to see the breast specialist today. Honestly, I knew I was seeing her this month, I even filled out the registration material last week, but if it wasn't for that reminder last night, I would have completely forgotten about the appointment. YES it is even on my calendar, but I am juggling so many things, that this just wasn't on my radar scope.

My dad receives a visit every Tuesday and Friday, from a nurse. I wasn't sure how I was going to juggle that visit and also make my appointment. At first, I thought I could walk my mom through the process, but it became abundantly clear, she just can't follow directions. So I waited for the nurse, we did his vitals and pressure wound dressing change and then I jumped in the car and drove thirty minutes to my appointment. 

The breast specialist is the kind of person you can't help but love. I don't say this lightly! She is that compassionate, kind, and lovely. Don't think because she is lovely that she isn't well qualified. She got her training at Cornell Weill and Memorial Sloan Kettering. Because she devotes time to her patients, she is NEVER on time! I know this about her, and I patiently wait. Every time she enters the room, she apologizes for being late. Of which I say..... "no need to apologize. You are dealing with patients who are hearing all sorts of news." I have compassion for those patients whose lives have been changed by one diagnosis. Any case, before we parted today, she told me I am a ray of sunshine. That she looks forward to seeing me every year, because she loves my smile and demeanor. We end each meeting with a hug! Trust me I don't hug my doctors..... so this should give you some understanding for the fact that she is a high caliber person. This doctor also knows I am a caregiver, which she finds remarkable. She said from her experience, I am a rare breed! 

So another successful breast care visit! I maybe distraught and feeling great despair over my life, but I can also be grateful for this report of good health. This is today's blessing. 

Monday, June 29, 2026

Monday, June 29, 2026

Tonight's picture was taken in June of 2009. That day we visited a friend who planned many fun activities for Mattie. Including this bubble machine. That large fly swatter came from Mattie's 7th birthday party weeks before. Everyone knew Mattie loved bugs, so every child at the party got a huge fly swatter. Mattie absolutely loved it and it turns out the swatter was great at batting bubbles. Naturally going through Mattie's cancer journey was horrific. But in between the horror, were moments of amazing beauty. Mattie's journey showed me the power of community, friendship, and incredible generosity and compassion of our care network. I will never forget both the good, the bad and the ugly.  

Quote of the day: Everything can change in a heartbeat; it can slip away in an instant. Everything you trust, and treasure, whatever brings you comfort, comes at a terrible cost. Health is temporary; money disappears. Safety is nothing but an illusion. So when the moment comes, and everything you depend upon changes, or perhaps someone you love disappears, or no longer loves you, must disaster follow? Or will you-somehow-adapt? ~ Margaret Overton

Since someone I knew recently took her own life, it leaves many of us with questions, thoughts, and feelings. Do you know that statistically fewer people attend the funeral of a person who dies by suicide versus natural causes? It is hard enough to lose someone you love, but imagine when it occurs this way, and then your friends and other family members may not show up to lend support. The word suicide triggers all sorts of responses from people. If you doubt what I am saying, then just try talking to someone about it and see. You most likely will find that people have very strong feelings and opinions. 

I say this because some people may consider people who die by suicide as being selfish. The word selfish doesn't even come to my mind when discussing suicide. But perhaps I would feel differently if this was someone I was close to and loved. Though my gut reaction is if I used the word selfish, it would be because I was deeply struggling with feelings of guilt and remorse for not being able to help change the nature of the outcome. 

As a cradle Catholic, I grew up understanding that the church frowns upon suicide. It is considered a mortal sin, as taking a life is really not for us to take as our life belongs to God. I do know that the church has expanded its thinking decades ago, because the church understands that most suicides are a result of grave psychological distortion, emotional trauma, or deep depression. 

But what is most upsetting is that someone going through a similar (yet different) path like mine, was in so much pain that she took her own life. It is seriously humbling and frightening at the same time. I have no judgment, only great compassion, because I relate to the depths of her pain, her isolation, and her disillusionment about life. Yet what does one do with that pain, in order to keep surviving to the next day? 

For me the answer varies on any given day. First and foremost, my role as a caregiver is a responsibility I take seriously, therefore, it keeps me moving from day to day. But perhaps it is knowing that I also carry Mattie's legacy. If I die, so dies Mattie's memory and his Foundation. When these two factors don't seem to snap me out of my despair, I then physically move around. I go into my garden, I pull weeds, I listen to birds, I listen to my fountain, and when all else fails.... I ask God to give me strength to make it to the next day.