Saturday, August 23, 2025

Saturday, August 23, 2025

Tonight's picture was taken in August of 2006. Mattie was four years old and that week, my parents and I took Mattie to San Diego. Mattie loved these road trips and truly there was something magical about San Diego. That day we visited Balboa Park, which to me is a must see if in the area. This is an 1,200 acre park filled with museums, restaurants, and the famous San Diego Zoo.  I happen to love lotus flowers, so when I saw them in the park, I pointed them out to Mattie. Mattie knew what they were already because our of annual visits to the DC Aquatic Gardens. What you may not be able to see in this photo was Mattie holding toy cars in each hand! A Mattie trademark!

Quote of the day: It must be those brief moments when nothing has happened - nor is going to. Tiny moments, like islands in the ocean beyond the grey continent of our ordinary days. There, sometimes, you meet your own heart like someone you've never known. ~ Hans Børli

At Easter time, I featured three Kalanchoe plants on our dining room table. Since April, I have kept these plants alive in these tiny pots. Today, I decided to repot them and place them in my kitchen plant stand. I used to buy flowers for special occasions. Now I only buy plants, because after the event, I land up cultivating the plants and either using them in my garden or inside. 

My mornings are hard! There is really no other way to say it. As my dad's dementia moves from the moderate to late stage of the disease, he has lost control of his bodily functions. Therefore, the clean ups in the morning are a killer. Though his side of the bed is fully lined with waterproof pads, everything needs to be soaked in white vinegar and then washed daily. Today, my order for waterproof pillow protectors came in, which will be a blessing, because I prop my dad's legs up with pillows at night, and each morning, I land up having to soak and then wash the pillows. What once was a 30 minute washing and dressing routine with my dad, is now a 90 minute routine. 

My dad's physical therapist came over today and while she was with us, we chatted. While chatting, I repotted plants. Many of the plants that go on this stand are outside now, and will come inside for the fall. I still remember getting these beautiful flower pots when I moved into the house.....because they have Mattie Miracle colors. In every part of our home, there is some sort of tribute to Mattie. Some tributes are very noticeable and others are very subtle! But Mattie's presence is alive and well in my home, car, and heart.  

My dad's physical therapist is in the process of buying her first home with her significant other. I remember that stressful moment so well, as it wasn't that long ago that I moved into this house. I had no idea when we moved in 2021, that my life would be dramatically altered. When Mattie died, I no longer could handle hearing about people's pregnancies and babies, and now I would say that all the things associated with marriage are topics that cause my heart to skip a beat. It is getting to the point that soon, I will not be able to relate to anything or anyone!     

Friday, August 22, 2025

Friday, August 22, 2025

Tonight's picture was taken in August of 2007. We were in Los Angeles visiting my parents. This was an annual trip, and Mattie loved it! Going to LA was always full of fun and adventures. That day, we visited the Zoo. It was SO HOT, that we bought Mattie the water bottle he was holding, that had a battery powered fan attached to it. Mattie thought that was a great invention... misting himself and then having the fan blowing on him! Don't you just love that smile? The adventures I had with Mattie Brown will never be forgotten. Here's the funny part, I lived in LA as a teenager and NEVER visited the Zoo. Mind you it was even close to our home! When Mattie came into our lives, he opened up a whole new world for all of us!

Quote of the day: It has taken awhile, but I certainly do know it now ­­– the most wonderful gift I had, the gift I finally learned to cherish above all else, was the gift of all those perfectly ordinary days. ~ Katrina Kenison

Last night, I got my dad into bed and propped up on all sides. I checked on him this morning, and he had moved, but wasn't slumped over. Which was a good start. I am hoping I can replicate what I did last night, because when my dad's back is in a better sleeping position, then it is much easier getting him out of bed in the morning. I truly hope that I am onto something and on the right path. Because it has been a very difficult week. I may have access to three different physical therapists and countless doctors, but guess who had to figure out everything? YES, ME, THE FAMILY CAREGIVER! Again not unique to Vicki, but the plight of all family caregivers. We are the ones who are resourceful, resilient, and persistent!

When I went downstairs to the basement to feed Indie, I noticed she once again pooped on an area rug. Same rug, different place on the rug. That makes it three times (Sunday, Monday, and Friday). Sunday, I felt she was sending me a message.... she wanted brand new litter! Monday, I figured it was just a reminder of her displeasure with me on Sunday, but then she used the litter box the rest of the week, until this morning. I can't tell you how upsetting this is and of course I naturally figure..... something is medically wrong with Indie. So at 7:15am, I called the vet. The lady on the phone was lovely! I told her the story and she consulted the vet. They feel that Indie's issues are behavioral. But just to rule out medical issues, I have moved her annual appointment up from November to September. They gave me the assignment of buying a NEW litter box. Here's the funny thing! Prior to Indie, we had Patches. Patches was with us for at least 15 years. During that time, she may have had two litter boxes in total. I keep the boxes very clean daily, so I have never had a cat poop outside of a box! I know it is common, but it is not common to me. We bought Indie a new litter box when we moved into the house in 2021. So to me this box is NEW. But the vet tells me that sometimes these plastic boxes need to be changed yearly! Perhaps, but to me it isn't the box, it isn't the litter and it isn't the position of the box. If it was one of these reasons, then why out of the blue is this happening now? 

The vet was saying that sometimes any changes in the house can set a cat off! The only recent change we had was the bathroom flood and my mom moved bathrooms -- to a room that Indie identifies as her own. Could that really create such a behavioral change? 

Switching gears, I was chatting back and forth with my friend in England today. We have never met each other, but we are bonded over the same thing... being single. In any case, she was writing to me today about structure and the ordinary. Which is what triggered tonight's quote. I believe when facing grief and trauma, the best we can do is stick to routine and structure. Structure provides the patterns to hold us up each day, it keeps us in the present and also keep us engaged with life. I find altering from this structure, causes me great upset. When I have great upset, then I focus upon what has happened to me, something my brain still can't comprehend. I can't understand how I can miss someone and every aspect of our life together, whereas these feelings are not reciprocated.

What I do remember was when Mattie had cancer and we were living in the hospital, I used to reflect on how I wanted the ordinary, regular, and normal days back. I longed to be just like everyone else..... able to freely go grocery shopping, clean one's home, do laundry, and all the other daily tasks we gripe about, but which are actually blessings. They are blessings, because it means we have the freedom to do them, and are healthy enough to independently do them. I may be deeply distraught from being discarded as a wife, but I can still appreciate the magic of ordinary days. 

My mom said tonight's dinner was worth a photo! My dad LOVES shrimp. He would eat it daily if he had his way. I made shrimp scampi with arborio rice and broccoli with tarragon. 

Thursday, August 21, 2025

Thursday, August 21, 2025

Tonight's picture was taken in August of 2007. Every August, we took Mattie to Los Angeles to visit with my parents. That day we went to Griffith Park, a Mattie favorite. The irony was I lived close to Griffith Park when I was in high school, yet it took having Mattie to get us to visit the park and explore it! It is an amazing park, filled with something for everyone..... the LA Zoo, a train museum (Travel Town), train rides, pony rides, and a Dentzel Carousel. Mattie loved this Park so much that every time we visited LA, we went to Griffith Park. How different our Augusts looked back then! These were happy and more innocent times. Before I learned about the horrors of childhood cancer and about abandonment and betrayal from the person I trusted the most. 

Quote of the day:...the grief would always linger, a ghost that would haunt every happy moment in her life until it became all she knew. ~ Jennifer L. Armentrout

The saga about getting my dad in and out of bed continues. One of my dad's physical therapists recommended that I have my dad sit on a pillow while he is sleeping, in hopes that the pillow would prevent him from sliding down the bed. Well, I tried to place my dad on top of a pillow last night, and it was a BAD plan. He was so wobbly on the pillow, I thought he was going to fall out of bed. So I got him up, removed the pillow and got him back into bed. It literally took me thirty minutes to get him into bed last night and positioned correctly. I can't quite put into words how frustrated I am with this whole process. My dad is unable to help himself in any way and thinks that I can move him without a problem. WRONG! My dad is dead weight and impossible to move, much less budge. 

This morning, as soon as I got up, before feeding Indie, I went into my parent's bedroom, hoping to find my dad propped up! FORGET IT! He was slumped over on the right, leaning on the bed rail, and had slid down the bed. I worked for 15 minutes to straighten him back up, which meant standing on the bed, behind him, and pushing his back up, to prop pillows behind him. Why is it important for him to be propped up? Because his convoluted slumped position aggravates his back, making him scream in pain whenever he has to move. Not to mention that it is impossible to get him out of bed when his back hurts. I have discussed getting a hospital bed with my dad's therapist, and it may come down to this, not for his benefit, but for mine. A hospital bed would give me more options to work with my dad. However, whether my dad is in his current bed or a hospital bed, he is still going to slump to the right. There appears to be no amount of wedges and pillows to stop this leaning!

This afternoon, my dad had a follow up appointment with his cardiologist. I LOVE my dad's cardiologist. He is a class act. Bright, competent, compassionate, and KNOWS his patient's needs, reactions, and history! When my dad was in the hospital, the hospital changed all of his blood pressure medications. This caused havoc on my dad! I learned today, that when one of my dad's blood pressure meds is stopped quickly (as it was when he was admitted to the hospital), this causes a spike in his blood pressure. So on discharge, the hospital prescribed medications to lower his blood pressure. But there really wasn't anything wrong with his blood pressure, if he was kept on his original medications. This is an important fact to know, and it arms me with the knowledge to fight these changes in the future. My dad is very sensitive to medications and therefore the doctors who know him, know that changing his medications is NEVER a good idea, unless absolutely necessary. 

A few weeks ago, I had a conversation with my breast surgeon about the doctors coming out of medical school today. She is a lot like my dad's cardiologist, invested in her patients. She told me she was concerned about who was going to take care of her in the future! Ironically my dad's cardiologist had a similar conversation with us today. I was telling him about my experiences with medical residents and he told me so many use AI to diagnose patients rather than logic, reasoning, knowledge, and clinical experience. If this doesn't frighten the hell out of you, it should! My dad's cardiologist was telling my mom that being a physician requires a certain amount of intelligence, but that this isn't what ultimately makes an excellent doctor. He went on to talk about the art of medicine. Well this whole conversation reminded me of the argument I had my with dad's foot doctor a few weeks ago. I told the cardiologist today about this argument. I told him that the foot doctor highly recommended her tech to medical school. I have known the tech for years, as she sees my dad every 9 weeks! However, this tech in my opinion is dopey. She never makes eye contact, doesn't talk with us, doesn't get to know me or my dad, but goes through the motions. When the foot doctor said this tech got into medical school and that she highly recommended her, I literally said, I AM SORRY! I told her this was the last thing I was expecting to hear, because I do not think medicine is a good fit for this young woman. My foot doctor and I got in such a heated discussion, we landed up not talking to each other for the rest of the medical visit. Today's conversation with my dad's cardiologist, confirmed everything I was saying to the foot doctor. Being a physician is a noble calling, and those doctors who listen, communicate with patients, encourage patients to play an active role in their medical care, are the ones who rise to the top. After all, if a doctor can't listen to a patient and understand the presenting problem from a patient's perspective, then I believe a lot will be missing that could contribute to a more accurate diagnosis and treatment plan! I am saddened that this foot doctor does not have this understanding and I am also saddened that there is a whole crop of new doctors out there guided solely by data and artificial intelligence. Human beings are greater than their medical data!

Last night while taking my dad upstairs to bed, I looked out the window. Look who was  staring right back at me. There was a family of four deer on our front yard.... two females and two babies. Mattie would have absolutely LOVED this sight, and naturally whenever I see these wonderful gifts from nature, I think of Mattie. 

Wednesday, August 20, 2025

Wednesday, August 20, 2025

Tonight's picture was taken in August of 2007. Every August, I used to take Mattie to Los Angeles to visit with my parents. We always stayed two weeks and had all sorts of adventures together. Thank goodness, because we truly had to pack in a lifetime in only seven years. That afternoon, we took Mattie to Emilio's, a restaurant in Sherman Oaks, CA. My parents went to this restaurant every Friday, and Mattie loved the fountain that was on the patio of the restaurant! As you can see, he had no problem posing for a photo by the lion! When I look at this photo and compare it to my life now, it truly brings about great sadness. If anyone would have told me that Mattie was going to get diagnosed with cancer a year after this photo was taken, or that 17 years later, I would be divorced.... I wouldn't have believed any of it! I maybe living it, and yet there are still times I can't process or accept it. 

Quote of the day: Betrayal is a more subtle, twisted feeling than terror. It burns and eats, but terror stabs right through. ~  Wendy Hoffman

I have three different physical therapists working on a strategy to get my dad out of bed in the morning. We are all trying to figure out why he slides down the bed while sleeping. When I put him to bed, I have him propped up perfectly! With all the wedges and pillows I am using, you would think it would be impossible for him to move. But he never ceases to amaze me. If my dad would remain in an upright position, then by morning, getting him out of bed would be much easier. But lying down flat is the kiss of death for him, as this causes him intense back pain. Therefore, trying to sit him up and move his legs over the bed onto the floor are excruciatingly painful. My dad has no understanding for how heavy he is or how difficult it is for me to move him, he just expects me to do the work. I am a lot of things, but stupid isn't one of them. Therefore I realize I have to be physically careful because if I get injured this whole circus show stops functioning. 

After I dropped my dad off at his memory care center, I then went to my Geek Squad appointment. I met a tech and got information about my phone and booked another appointment for next week, to get someone to work with me on how to back up my computer files. I do not understand the mechanics of the server in our home and I can't get our external drive to work either. There are some topics I am NOT well versed in and technology is one of them. It is a major life adjustment for me to navigate life as a single woman. I HATE IT.

Later today, I was juggling a grant support application for Mattie Miracle, and working with our CPA to complete our Foundation's 990 and other materials for our financial audit. I would love a day when I am not juggling anything, or worried about a problem or an issue. In the midst of doing paperwork, caregiving, water plants and other yard issues, I also cooked dinner. 

Food is one of the things that is important to me. No matter what state I am in, I am cooking. My cooking is not about throwing stuff together, but very intentional and fresh. Because of my love for eating, it naturally inspired me to learn how to cook as a young adult! 

Tonight I made a chicken meatloaf with onions, carrots, mushrooms, and broccoli. Beans with fresh mint and lemon, and my corn with tomato and basil salad. 

Tuesday, August 19, 2025

Tuesday, August 19, 2025 -- Mattie died 808 weeks ago today. 

Tonight's picture was taken in August of 2007. This was a year before Mattie was diagnosed with cancer. I went to a conference in New Orleans and I brought back a Mardi Gras mask for Mattie. As you can see, he loved it. It was a special time in our lives. Mattie was healthy and about to enter kindergarten and I was working part time and involved in leadership positions at various professional associations. Childhood cancer altered the whole trajectory of our lives. Which is why Mattie Miracle's tagline is.... It's NOT just about the medicine. Once Mattie was diagnosed, I stopped teaching, working, and gave up all my professional positions. If Mattie was never diagnosed, then I am quite certain my life would have looked COMPLETELY different. That is how devastating a disease it is for both the child and the family. 

Quote of the day: Mental pain is less dramatic than physical pain, but it is more common and also more hard to bear. The frequent attempt to conceal mental pain increases the burden: it is easier to say 'My tooth is aching' than to say 'My heart is broken'. Yet if the cause is accepted and faced, the conflict will strengthen and purify the character and in time the pain will usually pass. Sometimes, however, it persists and the effect is devastating; if the cause is not faced or not recognized, it produces the dreary state of the chronic neurotic. But some by heroism overcome even chronic mental pain. They often produce brilliant work and strengthen, harden, and sharpen their characters till they become like tempered steel. ~ C.S. Lewis

So this weekend, I bought this entire wedge pillow system. The reason I chose this one, is because you can move the pieces around to accommodate your needs. Last night, I had high hopes that this set up would work for my dad. I literally got him in bed, and had him propped up perfectly (with pillows all around him). I have wedges along his sides and one under his knees. I figured he was secure, that I would find him in the same position this morning. Forget it. The wedges did not move, but my dad slipped down the bed, so only his head and neck were located where his backend used to be when I placed him in bed. This is a position I definitely do not want my dad in because of his back pain. My dad really can't lie flat, and if he does lie flat, he doesn't have the core strength to pick up his body. He can't roll, he can't sit up, and truly getting him out of bed is like moving 200 pounds of dead weight for me. No matter the instruction I give him to help straighten his body out and reposition, he can't comprehend what I am saying and he has no control over his body once he is lying flat. In addition, any movement of my dad from this flat position, causes intense screaming in pain. So before 10am, I had already went ten rounds, because I had to get him up myself and get him showered and dressed. Needless to say, I wrote to ALL THREE of my dad's physical therapists, as I want them working with him on getting out of bed from a flat position. 

Once I got my dad downstairs, then the bathroom issues occurred. It is very frustrating, especially since I just got him showered and clean. Mornings for me are super stressful and in a way how one begins the day, has a way of setting the whole tone for the day. After I got my dad situated, I then had correspondence back and forth with our home insurer. Turns out once they pay me to get the renovations done, I then have a narrow window to supply photos, documentation and a certificate of completion insuring that the work was actually done. SERIOUSLY the stress just keeps on coming. Caregiving is challenging enough, but caregiving with contractors inside the house, may send me right over the edge. 

I took a pause and went outside to the backyard. As I was walking around the garden and pool, I noticed something on the stone patio. A gooey substance that literally looked like gum all along the periphery of the pool. At first I thought it was gum, but then I connected the dots and realized the person who just caulked the pool made a total mess. I took many photos and put in a formal compliant. It is the story of my life, I do one thing, and it leads to ten more issues and problems. 

Later this afternoon, I got a package by my front door. I opened it up and it was a big bag of Nyjer seed. Birdseed that gold finches LOVE! I knew exactly who sent me this gift! The gifter knew I love the birds but that I did not want the added expense of bird seed. Which was why she surprised me with seed! I pulled out our Nyjer feeder and moved the bird feeder hooks near my roses so I can watch the birds from our windows! Not unlike when Mattie died, the only thing now that brings me any sense of peace is nature. 

Monday, August 18, 2025

Monday, August 18, 2025

Tonight's picture was taken in August of 2008. Mattie was diagnosed with cancer weeks before this photo was taken. Our whole world was shaken. That day, Mattie went with our neighbor and his dog, JJ, for a walk. Mattie always wanted a dog of his own, and I am grateful for JJ, because Mattie got to grow up with this cute pup! Mattie had all the joys of having access to a dog and anytime Mattie was home from treatment, JJ came down to visit with Mattie. After Mattie died, JJ was severely depressed. JJ wouldn't eat, he would come and sit on my doorstep every afternoon, and if he came into our home, he would find something of Mattie's and bring it back to his own home. It truly was a very touching bond between this Jack Russell Terrier and my Mattie. 

Quote of the day: One of the heaviest load so many people are carrying today is neither thoughts about things they lack nor things they wish to have, nor how to manage what they already have, but toxic words that have taken a greater portion of their thoughts and such words not just occupying a great part of their hearts, but also draining their very joy in life! ~ Ernest Agyemang Yeboah

For two days now, Indie has been having bowel movements outside of her litter box. Indie is typically a clean cat, and I clean out her box daily. On Sunday morning, I figured she was giving me a message..... change the litter completely. So I did! But I was stunned to find the same issue this morning. If this continues, she will have to go to the vet, as this could be a sign she is ill. Though she is behaving normally and eating just fine. 

After I dropped my dad off at his memory care center, I went to the pharmacy to pick up his scripts. The main pharmacist, knows my whole family. She is great with my parents and super helpful! While there, the woman behind the counter wanted me to know that she loved what I was wearing. I of course thanked her, but I chuckled inside, because truly some days, I don't know how I put myself together at all. 

Once I got home, I was determined to contact the Geek Squad. I have them do check ups of my computers every two months. Given that my dad was in the hospital in July, my check up date came and went. Since technology is NOT my forte, I dread doing this activity. Today, I got up the courage to sit down and do the process on-line. The process was more complicated today and it took overall about 2.5 hours, working with two different techs (for each computer) at the same time. Nothing I ever do is quick and easy, but since I do not have these skills and can't consult my husband about any of this, I decided months ago to get outside help. I know my limitations. I am going into the store on Wednesday, and meeting a tech person live, because I want instruction on my phone, how to update it, and I have other questions about how to back up my files on my laptop. We have a convoluted served in our home, I don't get how to back it up and I can't get the external back up drive to work. This makes me very uneasy, as I want to back up photos, personal files, and all Foundation files. Truly why must things be so hard? 

This afternoon, I took my mom out for tea. By the time I got there, I felt like a basket case, between technology issues, managing the insurance claim, and renovation plans. On the way to Starbucks, we ran into a man with a dog. I have seen both of them before. Turns out the dog is 6 months old and she is an absolute love. She came right up to me and loved the attention and pets on her head and ears. For those moments I was with Leava, I forget about all my issues. The beauty of a dog!

When I got back home in the afternoon, I still was wound up like a top. So I decided to rake up all the leaves that fell on my driveway and front walkway. There were so many leaves that I filled up an entire greens barrel. Could I have blown the leaves away, probably, but then one good gust of wind, and they would have been right back to the driveway! If only it could be warm and sunny 365 days a year. The notion of transitioning to Fall and Winter right now is not appealing. Everything is harder in colder weather, caregiving is more challenging and not being able to go out and work in my garden is a major problem. My garden is my therapy. 

Sunday, August 17, 2025

Sunday, August 17, 2025

Tonight's picture was taken in August of 2008. Mattie was pictured between Jessie and Jenny (his art therapists). Jessie and Jenny came into our life right from the beginning, and it was through Jenny that we got connected to Linda (Mattie's child life specialist). Honestly I do not know what we would have done without all three of these women. If you have never experienced the power of art and creativity, and how it elicits feelings and conversation, then it is hard to describe what I am about to say.... but art therapy revealed so many deep seated feelings and fears that Mattie had, which he couldn't verbalize. Art also enabled Mattie to work beside other children with cancer and through these interactions, not only did the children bond, but you could tell that they felt understood and not alone. 

Quote of the day: Unspeakable feelings need to find expression in words. However... verbalization of very intense feelings may be a difficult task. ~ James A. Chu

There are many factors in my life that lead to my loneliness. I have the trifecta... 24/7 caregiving, the death of a child, and becoming single. Any one of these issues, would be more than enough, all three, make it the perfect storm. 

My grandmother suffered a stroke when I was in college. I saw the impact on my mom and her social life. Our home turned into a hospital and with that, slowly friends stopped visiting and interacting with us. This experience was so traumatic to me. I was in my twenties, and I decided then and there to get my doctorate in mental health counseling, specializing in the mental health care of family caregivers. When I entered graduate school, every research paper and my dissertation focused on the stresses of caregivers. I was desperate to understand what happened to our family and of course what I learned was we were NOT unique.

It is thanks to my personal and professional insights on family caregiving, that I now can normalize my current experience. I know nothing is wrong with me and there are thousands of caregivers all over the USA facing what I do each day. That said, it doesn't mean that at times I do not feel depressed, anxious, and hopeless.

I share this photo so you have some understanding of what I see on a regular basis. No matter the time of day, my dad is typically sleeping. Even sitting upright in a restaurant. If I did not work hard at getting him up and moving each day, I am quite certain he would not be able to and this would change the trajectory of his life and independence. 

The highlight of our day, is we had a phone call with our cousin Maureen. Maureen is a woman I deeply admire because she has devoted her life to caring for a countless number of people. She has done it without the expectation of positive feedback or any kind of renumeration. It is her calling and her passion, and I say it is a calling because it is very hard to selflessly give of yourself each and every day, without a break, and knowing with each piece you give to someone else, that piece comes out of your own physical and emotional bank account. Which is why Maureen and I understand each other very well.... we speak the same language, and for me it means the world to me when someone understands what I am going through without me having to explain or justify it!

While at the restaurant today, many emotional topics came up! Given the devastation that has occurred, this is a daily topic of conversation. Truly grief and trauma can be all consuming, and it can destroy your life. For me, I feel like my life is over, my life has been destroyed, and whatever future I thought I was going to have has vanished. What has happened to me causes me great upset, anger, and sadness, wrapped into one. I was so upset at the table today, that when I put my glass back down on the table, I did not realize the force at which I did this.... because the glass broke in multiple places. I am quite sure that it is easier being on the outside of my horror, and being on the outside enables one to say to me that with time these wounds will heal. But I say..... I highly doubt it. The best I can hope for is to find a way to live with what happened to me, just like I have learned to live with Mattie's diagnosis and death. I have never accepted any of this or gotten over it, but instead, have learned to live with the multitude of thoughts, feelings, and pain associated childhood cancer and Mattie's death.  

 

Saturday, August 16, 2025

Saturday, August 16, 2025

Tonight's picture was taken in August of 2008. It was Mattie's first week in-patient and starting chemotherapy! Why did it look like Mattie's hair was already missing? Because his medical team encouraged us to cut Mattie's hair short, so that as he began to lose his hair on treatment, it wouldn't be as traumatic. Frankly with cut hair or no cut hair, a six year old loosing his hair was traumatic! Being without hair was the first visual to Mattie that confirmed he was very ill and looked differently from his friends. That day, Mattie's art therapists brought in a project to engage him. As you can see, Mattie was gluing tiles onto pieces of wood. When the wood pieces were assembled, they formed a tissue box cover. To this day, this tissue box cover sits on my nightstand. Who knew at the time that these art projects would produce legacy items? I know I certainly didn't, but I am so grateful Mattie loved to create and that his art therapists appreciated and nurtured this side of him. 

Quote of the day: To him, freedom was greater than love. She hated that. Because she had always thought that love was freedom. ~ Tessa Shaffer

Mornings are very difficult in my house. Getting my dad out of bed is challenging at best. After consulting his physical therapist, I did buy a side wedge pillow, to help him from falling onto the bed rail. The side wedge has helped tremendously, but it isn't enough. By the time I get to my dad in the morning, he is no longer propped up, which is the best position for his back. As soon as he begins to lie flatter, back pain ensues. So today, after my mom could see what I face each morning getting my dad out of bed, she suggested we get a hospital bed. Yes it may come down to that, but I told my mom I wanted to try what his therapists recommended to me first..... which are a back pillow wedge and a wedge pillow under his knees (depicted in the photo).

As soon as I helped my dad out of bed, I could see it was going to be a tough day. Did you know there is a correlation between Alzheimer's disease and irritable bowel syndrome? They seem to go together, and it isn't like one causes the other, but many Alzheimer's patients have to cope with gastro-intestinal issues. I can't tell you what I faced today! My dad's bathroom looked like an intestinal crime scene and he has NO IDEA when and if he is going. I have been doing countless clean ups today, from the bed, the bathroom floor, the shower, and even in the restaurant where I took my parents for lunch today. This nightmare is so common place now for my dad, that I have learned to just deal with it. But in my moments of clarity, I ask myself..... could most adult children cope with this? Truthfully, I suspect not. I remember years ago, my dad's doctor telling him that the number one reason adult children institutionalize their parents is over bathroom issues. I think my dad should be glad that I have a high tolerance level for many things. 

I am worn out physically and emotionally today, so since the sun is still up, I am headed outside into my garden to continue cleaning up weeds, trimming roses, and watering plants. It is my therapy, but of course knowing we are slowly moving into September, I am aware of the sad fact that fall and winter will be fast approaching, and my ability to get fresh air and be outside will diminish.  

Friday, August 15, 2025

Friday, August 15, 2025

Tonight's picture was taken in August of 2009. We were home from the hospital and remember by that point we knew Mattie was dying. Mattie and I were sitting on the couch together. Mattie refused photographs, so you can see he put his leg over his head. That meant...... DO NOT take a photo! The black case next to my shoulder was Mattie's portal oxygen and in my hand was some sort of electronic device that I was holding to try to engage Mattie. Do not ask me why I was smiling and laughing. I have NO IDEA, because there wasn't much to laugh about. But what I do remember like it was yesterday is that when faced with a life threatening crisis, you learn to live IN THAT MOMENT. It takes mindfulness to a GRAND LEVEL. You don't focus on later in the day, you don't focus on tomorrow, much less next week. All you can grapple with is living in the moment. Though it was one of the worst and more horrific times in my life, it was also the most freeing. Because what I focused on solely was what and who was in front of me. 

Quote of the day: One thing's for sure, everyone has something. Not everyone has a giant scar or a missing limb to show for it, but it's there. The indelible mark of that thing. It's that thing that will not just go away quietly. That thing you resent because it can't let one day go by without making you think about it no matter how hard you try, until you end up depressed/angry/drunk/isolated (at best), disassociated (middle) or utterly self-destructive (at worst). It's that thing that went and branded you without your permission. ~ Anne Clendening

This morning after dropping my dad off at his memory care center, I came home and joined a conference call. Mattie Miracle hosts research innovation grants at two different professional organizations. Today's call was designed for me to meet the research committee associated with one of the organizations and vote on applications to approve Mattie Miracle grants. I was so impressed with this research committee. I got to know a little about each of the members, and I got to personally introduce them to Mattie Miracle. One of the committee members is a healthcare professional in China. The touching part was she told the committee that she attended a conference a while ago in Washington, DC and it was at that conference she heard me speak and tell our childhood cancer story. She said it has always made a big impression on her. I can't tell you how much that feedback meant to me. What it also meant is that Mattie's life has crossed the Pacific Ocean and is known in China. Which is music to a bereaved mom's ears. 

While driving in the car today, I got a call from my home owner's insurance company, to discuss the renovation. I have been assigned to a fellow who is very clear, professional, and competent. He understands that I am waiting for the final estimate from our contractor, but I gave him a feeling for what the scope of the work would cost and entail, and it sounds like the insurance adjustor and I are on the same page. I told him how impressed I have been with his company! If you recall, I called this company on August 6th at 10pm, because this was the time of day where I could have a meaningful conversation. I will never forget Tanya, the agent who assisted me! If you would have told me in 2023, before my husband left me, that I would be managing a household, keeping a household budget, paying bills, doing taxes, working with a divorce lawyer, dealing with car maintenance, managing all the trades that service our house and now add to it communicating with an insurance company, I would have LAUGHED! Laughed because these are not things I ever did independently. But when you are desperate, pressured, and you have older adults who rely on you..... you rise to the occasion, you figure it out, and in the process I have learned that many people in my life were wrong.... I am capable to balancing a budget, I am actually very organized and can juggle a thousand things in any given day, and let's not forget that I am also caregiving around the clock. There is no time to wallow or have a pity party, because there are too many crises in any given day. 

Thursday, August 14, 2025

Thursday, August 14, 2025

Tonight's picture was taken in August of 2009. We were home from the hospital and since we are all confined inside the walls of the hospital for weeks on end, when we were home, we tried to get fresh air. Mattie wanted water time with his remote controlled boat. So we got out his pool and he had the chance to be "Captain Mattie." Mattie loved boats so much that he would tell us that he was saving money in his piggie bank to buy a REAL boat someday! 

Quote of the day: There is nothing I would not do for those who are really my friends. I have no notion of loving people by halves, it is not my nature. ~ Jane Austen

I took my parents out today for their 65th wedding anniversary. As I told them today, our lives are very challenging and I am dealing with a great deal of pain and hurt, yet I can still appreciate the fact that we are all physically healthy and we have each other. 

I have been going to this restaurant in Great Falls for years. It holds special memories for me as I dined there on my birthdays and our wedding anniversaries. Getting my parents into the restaurant and seated was like a circus show, because I am traveling with seat cushions and pillows, as the chairs are too hard for them. It is one of me and I am carrying multiple bags... not unlike a sherpa! Once I finally got my parents comfortable, I looked up! When I looked up, there was Brian. I have known Brian for close to 20 years. His daughter and Mattie went to preschool together and I was always close to his wife and children. Brian worked with us today and he truly made us feel special. Brian said to my parents today that everyone who knows me, knows two things.... I am "beautiful and bright!" I told him he made my day! 

Brian snapped this photo of me with my parents! My dad was so excited about having a four course menu, that we had him take out his notebook (that he carries with him) and he recorded what he was going to be eating! 

Our luncheon started with an amuse bouche of split pea soup. 

My mom and I had a trio of salmon and my dad had onion soup! One of his favorite things!

The restaurant has its own farm on the premises! So the tomatoes, cucumbers, and corn came right from the farm!

My mom and I had halibut and they made my dad shrimp scampi with angel hair pasta (not on the menu, but they are kind enough to do this for my dad).

One of the desserts we had was a homemade plum tart with cinnamon ice cream. 

My mom ordered a grand marnier souffle!

My dad had a peach melba... made with a fresh peach! 

The management treated us to champagne today! I snapped a photo of the glass in front of the beautiful zinnias in the room. Zinnias to me are such glorious and happy looking flowers!