Saturday, June 27, 2026

Saturday, June 27, 2026

Tonight's picture was taken in June of 2009. You maybe asking yourself.... what's going on here?! Well Mattie was in the outpatient oncology clinic and he was having a wheelchair race with one of his art therapists. Understand that all of Mattie's art therapists and child life specialist would challenge Mattie to races and games. He thought it was fun and games, but we were all cognizant of the importance of keeping his body moving and building up strength. Remember at that moment in time, we thought Mattie was stable and we were working to transition him back to school that Fall. Of course two months after this photo was taken, we learned that Mattie's cancer metastasized throughout his body. 

Quote of the day: I'll tell you something, Harpy," he said, his voice almost a whisper now. "It never even occurred to me that we wouldn't make it. And it never occurred to you that we would. You were just waiting for us to go down in flames. I thought we could get through anything. ~ Kristan Higgins

Last night, I was cleaning up the dinner dishes and about to give my parents dessert. While working around the kitchen, my mom was talking to my dad about his day at the memory care center. The center has now provided me with a daily written account of what my dad does, which is super helpful as we can use this to start conversations with my dad about his day. Without that daily account, I have no idea what my dad does all day, and he has no idea either. As my dad is moving to late stage dementia, he is almost completely living inside his head. It is very hard to get him to talk and he most definitely doesn't like to be asked questions or to have a dialogue. 

So back to last night, as my mom was talking to my dad about his day, he snapped. He did not want to hear one more thing from either of us. Meaning, he did not want to hear conversation or talking and then went on to say that he wants to be just left alone and put in a nursing home. THAT IS WHEN I LOST IT! I have given up every aspect of my life to care for my parents and to hear that what I am doing is not even valued or appreciated did not sit well with me. When I say I lost it, it was an internal losing it. I did not lash out, scream, or express my disgust. I did not have to, as my mom gave it to my dad. My dad has NO IDEA what life would look like for him living in a nursing home, and the only thing that intrigues him about a nursing home is that he would live a completely silent and sedentary life. 

Any case, I went to bed with all those feelings swirling around in my mind, along with the catastrophic demise of my marriage. It is remarkable how I can function with all this going on. On an aside, you may recall that I tried to join a support group two years ago. I did not make it past two sessions as I did not like how the group was run. I just learned that the group leader killed herself last week. We may all have different viewpoints about suicide, but given that I understand first hand what it is like to lose someone you love, I have great empathy for the pain this woman was in and I am saddened by hearing this news. As I said to fellow group members that I still keep in touch with.... there but for the grace of God go I. 

This morning, while my dad was doing physical therapy with his therapist, I started cleaning a few of my windows, inside and out. There are some windows that I see everyday, and I love to see them clean. I was going to have all the exterior windows of the house cleaned this year, but my life is on hold with this mortgage assumption. Therefore, I decided to clean some of them myself today. I love this kitchen window. From it I can see my garden fountain and lots of hummingbirds. 

This is my dining room window. It faces a beautiful crape myrtle tree, which isn't in bloom yet. 

The living room window. It was a total mess! Now it is sparkling clean. I find the more I move around, the better my head feels, and I can feel the anxiety I live with dissipate. Therefore, I keep moving!

My favorite window in the house! It leads to our porch. I will never forget seeing this window and porch for the first time when I toured the house with a realtor in 2021. I fell in love with the garden and the view. Now five years later, I still LOVE my garden and my views. 

Friday, June 26, 2026

Friday, June 26, 2026

Tonight's picture was taken in June of 2009. Mattie was pictured between Brandon and Jocelyn. These were Mattie's closest buddies in cancer. Mattie and Brandon were diagnosed around the same time, and despite their age difference, they got along splendidly. Jocelyn was older than both Mattie and Brandon. However, she had the same cancer diagnosis as Mattie, and she quickly became a beautiful friend and mentor to Mattie. She normalized limb salvaging surgery for him and I will never forget her taking off her prosthetic leg and showing it to Mattie. I do not know where we would have been without these two amazing friends and it saddens me that both Mattie and Jocelyn lost their lives to Osteosarcoma. 

Quote of the day: In every friendship hearts grow and entwine themselves together, so that the two hearts seem to make only one heart with only a common thought. That is why separation is so painful; it is not so much two hearts separating, but one being torn asunder. ~ Fulton J. Sheen

I have no idea where today went. I was jumping from one task and demand to the next. It is now 6:30pm and I know I have to move away from the computer immediately as I am still fighting off a horrific migraine. Before I become unable to function, I now know when I have to stop and drop everything. So hopefully tomorrow will be a better day. 

Thursday, June 25, 2026

Thursday, June 25, 2026

Tonight's picture was taken in June of 2008. Next to Mattie was Charlotte. Mattie met Charlotte on his first day of kindergarten, and they became instant friends. In fact, if you asked Mattie, he would tell you that Charlotte was his girlfriend and he was going to marry her in the future. That particular day, we took Mattie and Charlotte to the canals in Georgetown and they went on a ride through the canal, on a boat pulled by mules. I captured this photo of the duo. Mattie was super happy to be with Charlotte, to have completed kindergarten, and to start summer vacation. Little did we know that a month later Mattie was going to be diagnosed with cancer.  

Quote of the day: You don't know when you're twenty-three. You don't know what it really means to crawl into someone else's life and stay there. You can't see all the ways you're going to get tangled, how you're going to bond skin to skin. How the idea of separating will feel in five years, in ten - in fifteen. When Georgie thought about divorce now, she imagined lying side by side with Neal on two operating tables while a team of doctors tried to unthread their vascular systems. She didn't know at twenty-three. ~ Rainbow Rowell

I think everything about life hit me last night. Most of my days look like I am jumping from one thing to another, and another, and another. By the time I had to make dinner last night, I just couldn't. A migraine was coming on, I was nauseous, lightheaded, and couldn't function. Of course, exercising right before I had to make dinner, wasn't a good plan, because I was already tired.

I can't tell you how many different medications I took last night, in order to just make my parents something to eat and then to clean up the dishes. I couldn't handle smelling food, so I literally took out the waffle maker, and whipped together a batter. I was gifted this waffle maker years ago by my former in-laws. I can't tell you how many waffles I made for Mattie over the years. He loved them. Even Sunny loved waffles.  

I attempted to eat a waffle last night, and I knew I had to stop immediately. No food would go down. After I cleaned up the dishes, I went to my room. I put an ice pack on my head and tried to regroup before I had to take my dad upstairs for bed. 

What I learned last night is my mom truly has no idea how to manage my dad or take care of his needs. She doesn't know how to change him, doesn't get the process, and of course my dad can't even tell her. So as sick as I was, I did his bathroom routine, changed his wound care, got him upstairs, and into bed. Getting my dad into bed is NOT an easy process either, as my dad can no longer lift his legs into bed, and he can't prop his head up. So literally I have to lift his legs into bed, and then quickly jump on the bed, stand up behind him and push his back forward to tuck pillows behind him. Then of course, I have pillow wedges everywhere... behind him, under his knees, under his arms, and a bed rail. 

By the time I got into bed, I was so ill. I didn't know if I could fall asleep. Thanks to migraine medications, I did! I woke up this morning at 6am, with a violent headache, but I wasn't nauseous or lightheaded, so this is how I started the day. I have learned throughout all these years to push through pain, but I didn't exercise today because I was strung out with non-stop mortgage assumption demands and Foundation administrative issues. Due to my dad's dementia, he really kept no usable files of financial documents for me to turn to, so any time I need to verify something, I have to call the company in question. I am beyond frustrated and each day the mortgage company has additional hurdles for me to jump through. May tomorrow be a more stable day.

Wednesday, June 24, 2026

Wednesday, June 24, 2026

Tonight's picture was taken in June of 2008. I remember this moment in time like it were yesterday. It was Mattie's end of the year kindergarten party. It was held at a local park, and I volunteered that day to help the teachers and to run games. I was lucky enough to snap this photo of Mattie with his two best kindergarten buddies.... Charlotte and Campbell. Charlotte was convinced that all three of them were going to go to college together. Such a lovely thought, and at that moment in time, I had NO IDEA that this was going to be our first and last "end of school party."

Quote of the day: You asked why I couldn't forgive you," Nick said, very quietly, and I jumped a little. "It was because you were the love of my life, Harper. And you didn't want to be. That's hard to let go.” ~ Kristan Higgins

If you ask me what I am doing each day of the week, you will find that it is pretty consistent. I do the same thing on Mondays, the same thing on Tuesdays..... well you get the picture. I have shut out the world, because I do not feel like the world understands me. This is not an unusual reaction to anyone who has been traumatized and is traumatized. The only way we can survive is routine, consistency, and retreating to protect one's self. I have three strikes against me..... I lost a child to cancer, I am unexpectedly divorced after a long term marriage, and I am the full time caregiver of my parents. Any one of these things makes me stick out, all three of these is like the horrific trifecta. 

But today, my friend in childhood cancer, Ilona, asked to meet for lunch. So my mom and I met Ilona for lunch. We had good conversation, shared updates, and had tasty treats. Look at this counter of pastries!!!!! 

It was nice to do something outside of the routine, but that said, I just feel so different. My friends are retiring and they are looking forward to their next chapter. For me, I have no one to spend my next chapter with, my other half is gone, the person who I thought was always going to be there for me and the person who held Mattie memories with me. So to me, I see no future whatsoever. 

Last night, we watched another episode of When Calls the Heart. Brooke Shields is in this series and plays the role of a bereaved mother, as her son (a Mountie) died in a training activity. In this particular scene, she was talking to her daughter-in-law. Brooke Shields' character received a drawing from her grandson (you can see it by her hands). The drawing shows her ALONE on an deserted island. Her grandson views her as a strong person, who doesn't need anyone. Of course this is the perspective of a young child who doesn't quite understand profound loss and bereavement. But Brooke Shields' character last night could have been talking about me! I truly was glued to her every word as she was talking to her daughter-in-law, because she described the ramifications of child loss..... you become an island. An island both self imposed and imposed on you by others. 

Tuesday, June 23, 2026

Tuesday, June 23, 2026 -- Mattie died 851 weeks ago today.

Tonight's picture was taken in June of 2008. That weekend, we met up with Mattie's kindergarten buddy, Campbell, and we attended the Cardboard Boat Regatta. I can't tell you how much fun this was to see small boats made out of cardboard boxes and teams competing to see if their boats would float and win the race. Literally this was right up Mattie's alley, and his hope was to one day be on a team and create his own boat. Of course that day never came. A month later, Mattie was diagnosed with cancer. After the races, Mattie and Campbell were playing by the water, and as you can see, Mattie was checking out how a soda can could float in the water!

Quote of the day: It is better to lock up your heart with a merciless padlock than to fall in love with someone who doesn't know what they mean to you. ~ Michael Bassey Johnson

Today was quite a depressing weather day. Gray, dark, pouring rain, and damp. Typically I do not let weather stop me, but today, it was relentless. So I never took my parents out. This makes for a very long day at home. We had visits from my dad's physical therapist and the nurse. My dad worked with the therapist for an hour, within an hour's time, I had to take him to the bathroom and change him twice. Though I am not reporting on bathroom issues as much on the blog, I assure you that my life hasn't gotten any easier in that department. It starts from the moment my dad wakes up and continues throughout the day. Most of his doctors and people who meet him, look at my dad and as always see him wearing clean clothes, being physically clean, nails trimmed, and hair cut. I am not sure where these people are at, but I assure you most of them do not understand that I manage all of these things daily. Case in point, the last time I saw my dad's primary care doctor, he counseled me that things would get worse, in which I would have to shower my dad, dress, and toilet him. I literally laughed out loud and said to the doctor...... what do you think I am doing now? CLUELESS. 

Thankfully during the winter, I make all sorts of homemade soups and then store them in the freezer. Out came the turkey soup today and it made for a great lunch. After which, I returned to the computer to finish an ethics classes I have been taking for my license renewal next year. I finished it today, and got three more hours of continuing education done. Doesn't sound like a lot, but with my schedule, completing any hour is a WIN! 

I am now on an exercise routine too. I am getting my cholesterol levels checked again at the end of July, and I want to see if a month's worth of exercise makes any difference. So I started back up again on Saturday, and have do 30 minutes of walking on the treadmill and step climbing daily. With the Foundation's Walk behind me, and as much of the mortgage assumption paperwork behind me, I am trying to commit to focusing on my own health. Or that is at least today's thinking. The doctor seems to think aerobic/cardio exercising will help my mood and give me an outlet to expend anxious energy that is monumental from my divorce. It is too early to tell whether I feel a difference, but I will keep at it and see. 

Monday, June 22, 2026

Monday, June 22, 2026

Tonight's picture was taken in June of 2008. It is hard to believe that a month after this happy photo, Mattie was diagnosed with cancer. That weekend, we took Mattie on a canoe ride along the Potomac River. This was a frequent occurrence for Mattie, but typically I wasn't included on those trips. That day, I was asked to come along, and naturally I did! As you can see, Mattie was smiling, and he was excited to show me his skills on the canoe and all the things he saw along the shoreline! Priceless moments. 

Quote of the day: The snag about marriage is, it isn’t worth the divorce. ~ Suzanne Finnamore

This morning after dropping my dad off at his memory care center, I drove to an outpatient infusion center to get my six month dosage of Prolia (for osteoporosis). I can't tell you what hurdles I need to jump through every six months to get my insurer to cover this medication. My mom gets the same drug, but Medicare makes it super easy. 

Over the last two months, my preauthorization for Prolia was denied. The insurer basically said, I had to take the generic equivalent. My doctor assured me that would be fine. So today, I was set to get the generic. When I arrived at the center, they were going to give me Prolia. I literally flipped out, because if I get a shot of Prolia, that is not authorized, I will be paying close to $2,000 out of pocket. No thank you! Any case, the nurse at this center was just lovely. We literally combed through my Cigna portal and she contacted her billing office. Turns out, that my insurer changed their minds at the last minute and did provide me a preauthorization for Prolia. Seriously, everything is a crisis. 

Before the nurse gave me Prolia, she wanted to take my blood pressure. Given how worked up I was, she was concerned my pressure would be high. Nope! My blood pressure was low. She was stunned. Any case, who would guess that sitting in an infusion chair could be a break, could be relaxing? Well for me it is! It is a few minutes in which I am sitting still, I am not addressing problems, issues, or caregiving. The infusion center has a TV screen with piped in images of nature and animals. I literally was staring at that screen for ten minutes, and at one point I closed my eyes. It was the most peace I had all day. 

It was in that moment of time, I did not think about my divorce, my 35 year relationship, the child we had together, the Foundation we built together, or the sheer chaos my life has been since 2023. It is unfortunate however, that this peace never lasts long. Because as soon as I walked out the door of the infusion center, reality hits...... responsibilities pile up, and the emotional pain and toll of a devastating divorce greet me once again. 

Sunday, June 21, 2026

Sunday, June 21, 2026

Tonight's picture was taken on Father's Day of 2007. Mattie was five years old and that day we decided to take our first DC Ducks tour as a family. This tour bus was right up Mattie's alley because it was an open air bus that could drive on pavement but when it got into water, it converted into a boat. As Mattie was into vehicles, I can't tell you the level of excitement over this bus/boat! In addition, the tour guide gave us all a yellow whistle in the shape of a duck's bill. When you blew it, it sounded like a duck call. That was our first and last duck boat ride, but a moment in time that I will never forget. I have now lost both my son and his father. 

Quote of the day: It's only when you grow up and step back from him — or leave him for your own home — it's only then that you can measure his greatness and fully appreciate it. ~ Margaret Truman

This morning I was listening to the radio while getting ready for the day. Being Father's Day, they played Thomas Rhett's song, Things Dads Do. I attached it below if you have never heard it. It is a beautiful tribute to a loving dad. Like so many holidays, I am very cognizant that Father's Day is not always a happy day for some. Perhaps your father died, or your father was not involved in your life, or you never knew your father. I am sure there are many other reasons why this could be a painful day for so many. What I am quite certain though, is Hallmark doesn't have a father's day card that covers the devastation of my life. 

While listening to Thomas Rhett's song, it pulled me for a moment out of my sea of sadness, and it reminded me that I am lucky to have my parents. My dad's life is to be celebrated, because my dad has always been a solid, unwaveringly, and committed family man. There was NEVER a doubt where his priority and allegiances were and as I told him today he is a rare gem in a complex world. 

Thomas Rhett's......Things Dads Do

This morning my dad got cards and gifts! No matter how old he is, he still LOVES gifts!

We took my dad out for an early dinner. Cheryl, our server, surprised my dad with chocolate chip cookies and a card. We have known Cheryl since 2021, when my parents moved to Virginia. She has been on our journey over the last five years and she always gives us gifts on birthdays and holidays!