Thursday, March 19, 2026

Thursday, March 19, 2026

Tonight's picture was taken in March of 2009. That was a special day at the hospital, as it was the ribbon cutting ceremony for the child life playroom. Before this playroom existed, there was no place to play or gather other than the hospital hallways. In fact, when Mattie started treatment at the hospital there was no playroom. I can't tell you what a gift it was when it opened. Which was why, Linda (Mattie's child life specialist) invited Mattie to cut the ribbon at the ceremony. Linda understood how important this space was for Mattie. If you want to know why Mattie Miracle funds child life, it is because of this amazing woman pictured next to Mattie. I called her my "medical Mary Poppins!" There is no way Mattie or I could have survived each day without her creativity, skills, advocacy, and compassion. 

Quote of the day: He has not learned the lesson of life who does not every day surmount a fear. ~ Gaius Julius Caesar

I think I finally fell asleep at 1am. I was absolutely strung out from dealing with multiple fraud alerts yesterday. I was telling my friend what I had to do yesterday to address these issues and her response to me was... wow! She said she had to re-read my message multiple times because she was unaware of some of the processes I was telling her about. What she reminded me is that I went from a person who knew close to nothing about managing household finances, dealing with budgets, paying bills, and maintaining a house, to someone who puts out figurative fires and crises every day. 

I would like to say that I woke up more at peace today, but I did not! I think when you are scared out of your mind, and have experienced countless and unexpected nightmares over the course of the last two years, it has left me hyperalert. I am constantly waiting for the next shoe to drop. But when I don't know who has committed yesterday's fraud, it makes me even more anxious. What I do know is I have followed every step recommended to me.

This morning, my dad had a foot doctor appointment. Just to get him up, showered, and dressed was a feat. But I got him to his appointment and then brought him home to nap for two hours before lunch. I took my parents out to lunch today and I have to say it is a humbling experience as my mom is glued to her phone, surfing Facebook, and my dad is out of it. Though my mom functions better than my dad, she is needing more and more support. When we are out of the house, she doesn't want to walk independently and therefore holds my hand (she will not use a cane or walker). It makes it fun when I am juggling my dad as well, but it is amazing what you get used to. I also think that being connected to her cell phone keeps my mom oriented to time and day, because my mom also has a form of dementia. I do not report this often, but I am not just caring for one parent, I am indeed caring for two. On days like yesterday, when I felt so insecure and needed support, the reality is my parents can't help me. NOT AT ALL! 

Wednesday, March 18, 2026

Wednesday, March 18, 2026

Tonight's picture was taken in March of 2009. When Mattie was on cancer treatment, he went through different food cravings. Honestly because Mattie was dropping weight dramatically, whatever he wanted to eat, he got. For the most part, chemotherapy made Mattie lose his appetite altogether. But on occasion, he made food requests. It did not matter what hour of the day or night these requests came in.... we made it happen. As you can see, this was Mattie's French fry and chicken finger phase! 

Quote of the day: I’ve had a lot of worries in my life, most of which never happened. ~ Mark Twain

Mark Twain's quote makes me laugh! I wish that my worries were just in my head. Unfortunately many of my worries are real and frankly even things I haven't worried about or even thought could be possible have become my reality! I thought I was going to write about some of the emails I received today from psychologists around the world. They wrote to me about the impact of Mattie Miracle on their work. Honestly these emails really touched my heart! Perhaps I can write about this tomorrow. 

Tonight I am STRUNG out! On Sunday, I was alerted to fraud, using my name and opening up accounts. Today, I received a call about this and got to speak to several fraud departments. From there a cascade of other tasks had to be done. I have now learned the steps of what one has to do when such a crisis arises! I am SICK, SICK I tell you of crises! Every day it is something else, and I miss being a family unit that solved problems and issues together. 

As I told my lifetime friend, Karen, tonight I am so anxious, wound up, and upset that I could literally smack someone! 

Tuesday, March 17, 2026

Tuesday, March 17, 2026 -- Mattie died 837 weeks ago today.

Tonight's picture was taken in March of 2009. It was St. Patrick's Day and we were headed to the outpatient clinic of the hospital for an infusion of Mattie's experimental treatment. As you can see friends gave Mattie all sorts of shamrock gear to acknowledge the day. I will never forget this moment in time and admire Mattie's ability to smile even when feeling so sick and exhausted. 

Quote of the day: There is no exercise better for the heart than reaching down and lifting people up. ~ John Holmes

This morning I had to take both of my parents to the hospital, because my dad had a follow up CT scan of his head. In December, my dad suffered a brain bleed. He has a neurology team following him and therefore my dad gets periodic scans. He had one in January and today the hope was that more of the pooling blood in the brain is being absorbed. Taking my dad to the hospital is no easy feat. Since it involves a lot of walking, I brought Mattie's wheelchair with us. But given the nature of today, my dad's anxiety was up. When his anxiety is high this triggers his irritable bowel syndrome. I swear that I changed him before going to the hospital and then I lost track of the number of changes at the hospital. Literally I was in the bathroom with him every thirty minutes and changed him four more times. Of course once we got back into the car, he went again. There are times that caring for my parents is so overwhelming on top of the emotional turmoil of my divorce that I don't know how I will make it! Life just seems grim and pointless.

Then I met Steven today! When I checked my dad into the radiology center for his CT scan, it was a show. Crowded and noisy! I pre-registered him at home to avoid doing more paperwork at the hospital. But sure enough they wanted my dad's ID and insurance card. Given that I had been going ten rounds with IBS bathroom changes, I was in no mood for more requests. I told them why do I bother to pre-register my dad if  you are going to ask me to just repeat everything I just did at home?! Of course they had no answers for me. Mind you my dad is in and out of that same hospital almost on a monthly basis. So he is a known quantity there! If they don't have his ID and insurance on file by now, well I can't help you! 

Any case, we waited close to 40 minutes for my dad to be called back for the scan. So the appointment time was not honored. This is when I met Steven. He called us back and he could see that I was balancing my mom, a wheelchair, a tote bag, and a walker. You would be amazed with what I can push, carry and hold. As soon as we got settled in the back, Steven said to me...... I can tell you are a special person and I am sorry you waited so long. I don't do this for everyone (and it is true the hospital do not comp parking for scans) but I am paying for your parking. He took my parking ticket for the hospital garage and had it validated. I was stunned. Then the tech came to get my dad and I went into the scanning room with them. The tech asked if he could help me, and I told him.... no I manage this daily. It was what he said next that was touching. He said, I know you have this, I can see that, but today I am here and I want to help! LOVED him. He immediately understood that my dad's body is frozen in place because of stenosis, making it hard to bend his head and neck to fit into the scanning machine. But together we worked as a team, along with Steven, and we literally taped my dad's head down far enough so that he could be moved into the CT scanner. 

Anyone who says that one person can't make a difference, hasn't met that one person. Steven and the radiology tech today made me feel appreciated, heard, and respected. Radiology angels are indeed among us!

Monday, March 16, 2026

Monday, March 16, 2026

Tonight's picture was taken in March of 2006. Mattie was almost four years old. We were sitting on the floor admiring this beautiful flower pot. This pot was an auction item from Mattie's preschool. It had the thumb prints of all the children from Mattie's classroom all over the flower pot. Mattie was thrilled that I was able to bring it home and that we got to keep it! Of course Mattie did not know the process entailed for us to win it. I may nice and kind, but you don't want to see me at an auction. I strategize, I am persistent, and if I wanted to win something, then I usually did! 

Quote of the day: Life isn't about waiting for the storm to pass...It's about learning to dance in the rain. ~ Vivian Greene

Last night, I happened to check my email and I received a message from my dad's memory care center. They wanted us to know that they canceled the program today due to the pending rain storm. A storm that could produce strong winds and tornadoes in some places. Literally when I received this message, my reaction was..... you have to be kidding. I even wrote to the center with my displeasure over their decision. 

I have been receiving constant updates about this storm through email and text messages. If you are NOT an anxious person by nature, all I can say is.... lucky you! But these multiple warnings and information could trigger a panic in the rest of us. In fact do you know there is now a term for this.... eco-anxiety. All I know is when I was growing up, we did not stop living and functioning with a rain and wind storm. I am also quite certain that the pioneers in our Country didn't either. I certainly can appreciate the need to keep people safe, but at some point, we have to be self reliant. We have to make sound decisions for ourselves and weigh the risks. I am sure some of you who are reading my words do not agree with my philosophy. 

Perhaps panic over rain may have increased due to more frequent extreme weather events (flooding, mudslides). But I blame our 24/7 on-line existence, where we are bombarded with photos, news, and non-stop commentary! Storm warnings sound almost apocalyptic now. I, for one, do not need any more assistance in the anxiety department. After hearing all the panic in the news, my anxiety level increased significantly, as I am responsible for the safety of my parents and keeping this house intact. All day, when it wasn't pouring, I went outside to clear drains and make sure water wasn't pooling about!

All I can remember is when we moved into the house in 2021. It was in August, and we had one of those violent summer rain storms. I was awoken at 2am, with my other half screaming from the basement. For about 3-4 hours, we were trying to collect, vacuum, and sweep out water from the basement. We worked non-stop, it was like trying to hold back the ocean, but we did it! Then we ran fans 24/7 and I sprayed Lysol multiple times a day for weeks. It was due to our fast action, that we caused NO DAMAGE to the basement. But that memory remains in my head. Is it a memory or fear? Maybe both! All I know is if there is a flood now, I am the only abled body in the house to manage it, just like everything else. 

On an aside, my gardener came over this morning to begin our spring cleaning and mulching. When I saw Ritchie, I laughed! I told him that seeing him and his crew calmed me down today. Of course they did not work long because of the torrential rain, but just seeing people out, about, and functioning reminded me..... the world isn't ending, I will not be carried away in a flood, and that I can figure this out! In fact, Ritchie reminded me of my self reliance when he said that the reason my property looks so good is NOT because of him and his team, but because of the weekly work I do! 

Sunday, March 15, 2026

Sunday, March 15, 2026

Tonight's picture was taken in March of 2005. Mattie was almost three years old! We were in the process of painting the walls on the first floor, so everything was in the middle of the floor. But as you can see Mattie did not mind the chaos. He had his Easter sunglasses on and was a happy camper. I absolutely loved that smile!

Quote of the day: A single act of kindness throws out roots in all directions, and the roots spring up and make new trees. ~ Amelia Earhart

This afternoon, I took my parents out to brunch. It is part of our Sunday routine. For five years we have seen Cheryl (our server) on Sundays. We have gotten to know each other so well, that we give each other gifts. Honestly when Cheryl gave me Easter gifts today, I was practically disoriented. As in my mind Easter is far away! Cheryl's gifts oriented me to the upcoming holiday and each year she adds to my collection of bunnies and eggs! 

Cheryl gave me several towels today!

Towels I collected over the years!

Do you see these wonderful white bunnies? Cheryl gives me a bunny every year!

Cheryl gave me some beautiful eggs today, which I put in a bowl with some faux grass!

All of these items are antiques which were given to me by my former mother-in-law. They are reminders that I was married and was a part of her family for decades. 

Saturday, March 14, 2026

Saturday, March 14, 2026

Tonight's picture was taken in March of 2004. Mattie was almost two years old. It was a warmer March afternoon, and Mattie and I went outside to our deck. I brought out Mattie's tunnels and things and we were playing outside together. One thing was for certain from the day he was born until he died, and that was I played many roles in Mattie's life, one of which was play companion and buddy! I loved watching how Mattie's mind worked, he was constantly moving, assessing, and creating!

Quote of the day: There is no greater power and support you can give someone than to look them in the eye, and with sincerity/conviction say, 'I believe in you.' ~ Ken Poirot

It was another crazy morning of cleaning linens, the shower, and the floor. I am slowly adjusting to this massive IBS cleaning, in that it is becoming the norm. It is ironic that with each stage of decline that my dad experiences, I find it initially very hard to adjust. But then I accommodate and therefore the ridiculous becomes commonplace. But this is the life of a full-time caregiver. It is these constant changes that makes caregiving so challenging! Just when you think you figured it out and you have a routine down pat, the needs change! With each change, the caregiver is forced to figure things out and develop new strategies and routines. That may sound easy, but I assure you it is anything but easy. Instead it is living with constant uncertainly, waiting for the next shoe to drop, and this alone can produce stress and anxiety.

This morning one of my dad's physical therapist's came over for a session. I was explaining to her how hard it is for me to get my dad up from a restaurant chair. So today she developed a strategy for me to try, as all my dad's therapists are concerned that I do not injure myself. The good news is I tried this new technique while out today, and I was able to get it to work without expending much energy.  

The past two days have been windy. Branches have been coming down all over the front yard and driveway. This is the pile generated in just two days. Today, I finally went outside to break it down and put it in bins. 

It was a great hour outside in the fresh air. As you can see I made headway. But had to stop because I have no more room to put the debris. Once garbage collection occurs this week, I will go back at it. I am sure there will be more debris to round up all over the yard by mid-week. 

Friday, March 13, 2026

 

Friday, March 13, 2026

Tonight's picture was taken in March of 2004. Mattie rarely sat in this big white rocker. When he did it usually meant he wasn't feeling well or he wanted to sit with me and rock. When I was pregnant my mom bought us this chair. Though Mattie is no longer with us, the chair remains in my family room. The chair is worn and truly it is not as stable as it used to be, but I just can't seem to part with it. 

Quote of the day: Anger is an acid that can do more harm to the vessel in which it is stored than to anything on which it is poured. ~ Mark Twain

Mark Twain was quite accurate about anger. For the most part, I keep my anger in check. Meaning I try not to lash out at others, unless provoked, and when being assertive is necessary. Otherwise, my anger goes internally and it is true the feelings it invokes could destroy me from the inside out. Today, while driving from one area in my community to the other to pick up my dad at his memory care center, I ran into traffic. Not traffic on a main street, but traffic leading into my neighborhood. So it is a street that you wouldn't take unless you live in my community! I truly did not know what was going on and was ready to flip out, as I had a limited window to pick up my dad. However, I remained patient. Then I noticed cars in the line in front of me, doing a three point turn because they couldn't move forward. Again, I had no idea what was going on. As cars started to move away from the pile up, I noticed a man (who I don't know) standing in the middle of the road directing traffic. He was telling people NOT to enter our community, but to turn around. Literally by the time I got up to him, I told him outright that he can't stand in the middle of the road and he certainly can't be telling us what to do in our own neighborhood! 

At which point, he started yelling at me that electric lines had come down because a tree fell on the lines. As he was conveying or screaming at me, I could see what he was saying, but again, I have a brain and can determine whether I deem it safe to traverse the road or not. The majority of people complied with his directions, I did not! The side of the road I had to trave on had no downed lines and there was no way I was turning back to get on the main street to fight traffic. As it is, because I was late getting to my dad, he was in a state, ready to cry. He was ready to leave and I wasn't there, and he thought he was left behind. 

So now that I am not in a car and do not have time pressure, why did I yell at this man? Was he trying to be helpful? Maybe! But it was how he went about it! He did not convey the problem, he just started screaming at cars and telling us we were idiots for being on this road. NOPE, his whole demeanor did not sit well with me and given what I am enduring in my personal life, I don't respond well to being yelled at, dictated to, or better yet called an idiot or stupid. But overall, I am also aware of my own internal anger about my life and yesterday's technology crisis in my house did not help as it is still reverberating through me. Could I beat myself up about what happened in the car today (confronting the man in the road)? I could, but I am not going to because the hardest judge of myself is indeed myself. Somewhere along the line, I may learn the art of showing myself the kindness that I try to provide to others on a daily basis.  

Thursday, March 12, 2026

Thursday, March 12, 2026

Tonight's picture was taken in March of 2004. Mattie was almost two years old. I snapped this photo because I loved Mattie's whimsy! He put on his dad's baseball hat and what I love is Mattie had no idea that the hat would cover his entire face! Even not seeing Mattie's face, I would know immediately it was him... Mattie's telltale sign was in the photo.... his sippy cup! A sippy cup was always in tow regardless of the season or the weather!

Quote of the day: Anxiety is a meteor shower of what-ifs. ~ Max Lucado

This morning after getting my dad ready and once his physical therapist arrived, I got on the phone with Verizon. We have been having trouble with the cable TV and connectivity. Either TV or the internet being out in my house is a catastrophe! Though many of my neighbors have Verizon, I tend to be the one that always has the problem! I literally am not kidding, as I know our regional manager and three techs. One of the techs I refer to as my Verizon angel. I have all of their cell phone numbers! Why? Because my issue arises every six months. It is almost like clock work. I can call the 1-800 number, but my issues can never be diagnosed and fixed remotely. So literally while talking on the phone with a Verizon tech support person today, I was also text messaging my Verizon Angel. The Angel happened to be in my neighborhood and within 8 minutes he arrived. 

I have been pushing off the inevitable. When we moved into our house, we created a network of EERO extenders so that we could get Wi-Fi around the entire house. But in all reality, it has never solved my connectivity problems. I can be on Zoom calls and literally my internet connections just drop. This week it was beyond frustrating, as people were talking to me and I couldn't hear them and they couldn't see or hear me! So when I mentioned this to the Angel today, he said to me.... it's time. That may not sound like a big deal, but changing from Eero to other extenders changes the connections to certain things in the house. The first thing he did was to take my shared drive off line. He prepared me for this and he could tell my anxiety level was through the roof. Literally I was so afraid of losing data (yes I have backed a lot of it up), but I have used this shared drive for over a decade, and it is my electronic life. As the shared drive went off line, I literally had to sit down, look out the window, and breath. Once the Angel found out I was divorced, because remember he knew me as married, his patience and compassion increased. I have to get things up and be self-reliance because I no longer have my built in tech support at home, and remember technology hasn't been my strong suit. 

The Angel got the TVs up and operational again and installed the extenders. However, he was called away to another job. Of course after he left, many of the electronic things in the house that need to be on Wi-Fi were having trouble recognizing the new extenders. I literally thought I was going to jump out the window. While dealing with one issue after the other, I was managing my dad's multiple bathroom accidents and cooking and doing laundry. It is after 7pm, and I literally am a bundle of nerves, at one point today I was shaking from fear. All I can say is when will it get easier? 

While chatting with the Angel today, he was telling me about all his friends who are getting divorced in their mid to late life. He said that most men are afraid to leave their wives when they hit their fifties and from his experience it isn't the men who want a divorce but the women. He cited many examples today and the emotional toll it has taken on several of his friends. He said that he has observed his friends feeling so overwhelmed that some even considered suicide or harming the other person. In a world of confusion now a days (look no further than what is reported on the news) it is clear that for some life is unimportant and dispensable. Though I do not share these values, I also can understand without question why someone could feel this low, so empty and so desperate that no other options seem available. 

Any case at the moment, I have TV and the internet! For that and having a Verizon Angel, I am grateful!

Wednesday, March 11, 2026

Wednesday, March 11, 2026

Tonight's picture was taken in March of 2003. Mattie was 11 months old and it was his first trip to Los Angeles. That day, we took Mattie to the Huntington Gardens in Pasadena. Here's the funny part about all of this, when I was in high school and lived in Los Angeles, I visited the museum at the Huntington Gardens, but I never explored the gardens. Since Mattie was all about outdoors and nature, he opened up a whole other world for me and for my parents. This has to be one of my favorite places to visit and I am so glad that we explored it with Mattie. These are memories that are locked within my mind and heart. 

Quote of the day: Despite all of the talk about resilience being an individual trait, most of us are only as resilient as we are loved. ~ Taiki Matsuura

For years I have heard of this series. My college roommate, Leslie, was actually the first person to tell me about it! She and I tend to like the same sort of programming. 

Each night, my parents and I watch TV together. We just finished watching the show called Hudson & Rex. A crime drama that shows the amazing bond between a major crimes team and a K-9. Ironically I stopped watching this show when I learned the main character in real life was diagnosed with cancer and once stable he wasn't allowed back onto the show. In addition, during season 7, Rex (the dog) died in real life. That was enough for me! So for us the show ended at season 6. I do not like change in my real life, and I definitely can't handle it in my TV programming. Losing the original Hudson and the original Rex was enough for me.... some things/people are NOT replaceable!

So a few days ago, I turned to When Calls the Heart. I have watched several episodes of this show years ago, but at the time I was the only one it resonated with, so we did not continue watching it. But now, my parents and I are hooked. This is a Hallmark production, and the program creator is Michael Landon, Jr. I think what this show illustrates is that it is possible to tell a meaningful and beautiful story, without violence, sex, and ridiculous visual effects. The story speaks for itself, as do the actors. 

In one of the scenes from When Calls the Heart, Abigail (played by Lori Laughlin) talks about the loss of both her husband and son in a coal mining explosion. She poignantly points out that she was once a wife, and was once a mom, but now she is neither. It left an enormous hole in her identity and life and she was left to try to figure out what is next in her life. It is an enormous test to one's character to try to pick up the pieces and find a way forward. All I know is I felt like Abigail was speaking my language. I identified with her traumatic losses and the emptiness that results from the unexpected. When I find someone who can give voice to what is in my heart, it gives me pause. All I know is at night, while watching this show, my mind takes a break from my own inner turmoil. Which is a blessing. 

This morning, I had the opportunity to take part in a conference call with the co-founders of another childhood cancer non-profit. In fact, we spoke to this couple a few years ago and shared insights about creating a 501c3 and some of the lessons we have learned along the way. On an aside, in the 17 years that Mattie Miracle has been in operation, we have helped many other parents get their non-profits off the ground. I take great pride in this, and while on the call today, watching the co-founders (who are bereaved parents) interact, I couldn't help but pause. Why? Because at one time this was how me and my other half were.... we were on the same page, working together, having a vision, and working that vision to make it a reality. The moments of grief and sadness present themselves at various times, at unexpected times, and I can't say with time being divorced has gotten any easier. It only gets more familiar. 

Tuesday, March 10, 2026

Tuesday, March 10, 2026 -- Mattie died 836 weeks ago today.

Tonight's picture was taken in March of  2004. Mattie was almost two years old! To me this photo says it all, as I was trying to take a photo of Mattie and this was not what he had in mind. Mattie wanted to go outside and I was slowing him down. My need to snap photos was not part of his plan. So you can see Mattie got himself outside to our deck and was ready to close the door on me, to prevent the photo, but more importantly to hurry me along. Somehow I captured the photo and his impish smile! 

Quote of the day: It’s not the honors and the prizes and the fancy outsides of life which ultimately nourish our souls. It’s the knowing that we can be trusted, that we never have to fear the truth, that the bedrock of our very being is good stuff. ~ Fred Rogers

It was another winner of a morning. Not very long ago, these types of mornings occurred maybe once or twice a week. Now they happen every single morning. The IBS cleanups, while showering and dressing my dad, are overwhelming and frustrating. My dad's cognitive decline is significant. I can say something to him and two seconds later, he doesn't remember what I just said. My dad has lost all memory of most things, including his long-term memory. In addition, my dad knows that I was once married, but he has no idea where my other half is, or what transpired. To my dad, my other half is just away on a trip! If I could only sign up for this portion of his memory, I'd do it in a flash! 

Once I got my parents settled this morning, I then went to my monthly task which I hate..... figuring out how I am paying bills. I spent two hours on bills today and thankfully had a quiet moment where I could actually think. In addition to bill paying, I am also focused on the Foundation's Walk Website. All I can say is THANK goodness, I designed this site a few years ago. If I had to create this from scratch now, I would jump out the window because that would require a steep learning curve. As it is, it has taken me weeks to work on sponsors and raffle items, which was crucial, in order to be able to input that into the website system. 

I finally finished the book I was gifted. The book is a memoir of a woman's relationship and unexpected divorce after 20 years of marriage. In one of her chapters she reflects on what to do with photos, videos, items, and her wedding album. I am sure if you ask divorced women what they have done with these once cherished items, the answer maybe different. But not unlike the author of the book I was reading, I would NEVER throw these items out. Why? Because you can rob me of my present and future, but there is NO WAY you are going to wipe away my past. I was in a relationship for 35 years, had a child, went through a childhood cancer journey, built a Foundation in Mattie's memory and experienced a medical trauma and grief journey together. These are the facts... the photos don't lie. They are visual reminders of the LOVE, SUPPORT, and RESPECT that surrounded those 35 years. 

It was 70 degrees today! Absolutely glorious! I can always tell when it is warm outside.... because Indie insists on outdoor time. I wish I could just let her out, like I would with Sunny. But unlike Sunny, Indie can't be trusted. She needs constant supervision, because one bird sighting and she would will running all over the place and migrating away from our backyard. The only positive of Indie's desire to be outside, is she forces me to go outside with her and to sit still for a moment!