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!

Wednesday, August 13, 2025

Wednesday, August 13, 2025

Tonight's picture was taken in August of 2009. By this point, we knew Mattie was going to die, and he elected to return to the hospital. Mattie was brilliant because there was NO WAY we could have managed his death at home. Mattie's death was horrific and required propofol to put him into a coma. Truly his room looked like a crime scene. But the day you see in this photo, took place in the child life playroom. Mattie was surrounded by his art therapists (Jenny and Jessie), Liz (a poet, who volunteered her time with the children), and volunteers. Mattie was like a moth to a flame, he had amazing energy and his energy was contagious! I will never forget these amazing women who helped us cope with the impossible. They remain always in my heart. 

Quote of the day: The death of someone you love is like the lingering smell after a fire. The fire is out, the embers are cold, but still you can smell it. It’s a constant reminder that it happened. ~  J.M. Lefevre

This morning, after I dropped my dad off at his memory care center, I came home and made doctor appointments for my dad and paid bills. Then I decided I needed to take a pause from my constant stress. So I went outside on my porch for about ten minutes! If you want to know what I fell in love with first when buying this house.... it was the outside, way before the inside! To me it was an amazing green space! In fact, when I was at the framing store two weeks ago to select a frame for a painting our backyard, another customer who was in the framing store started chatting with me. She looked at the painting of my backyard and said.... you must host so many wonderful gatherings and events in your wonderful backyard! I certainly did not go into my train wreck of a life, but what she said, was my hope and my vision for this new chapter in our lives. A chapter that NEVER happened!

Why can't I sit still? Why can't I relax? Well for me this feeling is NOT that unusual! It is what life looks like living with trauma and grief. A feeling I know all too well. I am aware of the fact that how I live my life looks very different from most people, yet when I talk to other women who are facing aspects of what I am dealing with now (and I am NOT talking about my caregiving role), what I am reporting resonates with them. What I know is my body and mind go into protective mode, in order to help me survive very difficult times. Therefore, I do not apologize for how I feel, I do not try to explain it to others, instead, I retreat and do the best I can to remain stable. 

This afternoon it was raining, or more like pouring! I went back to the porch for another ten minutes and captured a hummingbird visitation. I captured this video but couldn't figure out how to get it onto the blog! Again, this was when I would have asked my husband for help! But since that isn't even in the realm of possibility, I googled my question. Which is when I learned about iCloud. Sure I knew about the Cloud but had NO IDEA how to access it. Another thing, I learned about today and was able to download the video I took from the Cloud and got it on the blog. This may not sound like a big deal, but for me, it was HUGE!

While out having tea with my mom today, I got countless phone calls from my dad's memory care center. They wanted me to know that my dad was profusely vomiting. I listened and then asked for more clarity! They removed him from the group and had him in the nursing area, but what I was able to deduce was he really wasn't vomiting. Instead, I connected the dots, since it happened right after lunch, it meant that he ate too fast and some of the liquid and watermelon landed up in his lungs. His lungs weren't happy and therefore he was aspirating up liquid and watermelon. Now the fact that I had to explain aspiration 101 to the center, and to a nurse, was disconcerting. They changed him multiple times as he was soaked. After getting off the phone with them, I consulted my dad's doctor and he concurred with me about what probably happened. Nonetheless, the center called again, as the coughing up of mucus was happening throughout the afternoon. 

Any case, I picked up my dad from the center, and one of the staff members walked my dad to the door and she asked him how he was doing. He of course said, fantastic! Why? Because he had NO memory of any of the vomiting that occurred over a four hour period! Therefore, there was no lesson to be learned because he had no idea what happened. Policing my dad while he is eating is one of the many tasks I try to manage in any given day, because of the speed in which he eats, choking is never far from my mind. Later today, I was emailing back and forth with one of the staff members at the memory Center and she wrote to me.... "you are an amazing human being who has had far too much weight on her shoulders." AMEN, I couldn't have said it better!

Tuesday, August 12, 2025

Tuesday, August 12, 2025 -- Mattie died 807 weeks ago today.

Tonight's picture was taken in August of 2009. By that point, we knew that Mattie was dying and Mattie's tolerance for noise and visitors was non-existent. If you have ever been hospitalized, then you know this is the last place you want to be to get rest. Hospital personnel come in and out of the room at all hours of the day or night. Most times, they just walked in, never knocking. It was very unsettling, because some times chaos was going on behind the door and if they walked into this mix, it only made matters worse! Any case, that day, Mattie's art therapists helped us by creating a STOP sign and we put Mattie's creation, Dr. Crazy Hair outside the door! Unfortunately, STOP sign and all......... it did not prevent people from coming in without knocking. It is a trained response to just come in and there was nothing we could do to change that pattern. Absolutely nothing..... which further heightened our anxiety, as we had control over absolutely nothing. 

Quote of the day: Pain and suffering are always inevitable for a large intelligence and a deep heart. ~ Fyodor Dostoevsky

This morning I took my parents for their doctor appointments. They see this particular doctor every six months. Today he got to talking about his family dynamics. Truly the stories were fascinating, as he highlighted many relationships in his extended family that landed up in divorce. This doctor doesn't know my story, as we always focus on my parents. But it was uncanny the topic he chose today, and his candor about how the lives of several of the women in his family were permanently changed. One woman in particular became a recluse. She never leaves her home. Now I am sure to the average person who hasn't been betrayed by a significant other, the notion of disengaging from the world sounds ridiculous. Or hard to grasp! But to me, I related to her story wholeheartedly. If I did not have my parents with me, which forces me each day out into the world, I too, would close up shop. Nothing in my former life really interests me, I can't imagine anything to look forward to, and certainly socializing is a thing of the past. Yes I do think that there are things that happen to us in life that are impossible to heal and recover from. 

I would like to say that this woman's story is very unique! But from what I am seeing through my on-line communications with those who have also become single, they too have completely altered their lives. After all how would this not be possible, when the future you imagined crumbles.

After the doctor's appointment, I took my parents out for frozen yogurt. As I mentioned before, I know all the women who work behind the store's counter. They are a family and they look out for us. Today, I got to talking to one of the women, as she came over to find out how my dad was feeling after his hospitalization. While talking, we started asking about her family. Her mom lives far away and therefore she hasn't seen her in years, and with that she started to well up with tears. What I have learned from my own experiences with loss, grief, and trauma, is that trying to placate someone's pain, or saying some sort of platitude doesn't help! So instead, I just listened and allowed her the space to feel however she wanted to feel. It doesn't solve her problem or even change how she feels, but it did allow her to understand that I was listening and that I understood that she was terribly hurt. Sitting in someone else's pain is a powerful experience and it has the way of making the other person feel less alone. 

Later this afternoon, I went outside to do more weeding and watering. This is my therapy. I do so much work with my hands and arms, that by the end of the day, every muscle in my body typically hurts. When I went to the mailbox today, I pulled out this beautiful sunflower card. It was from my friend Phyllis in Los Angeles. As a long time family friend and blog reader, she knows exactly what the sunflower means to me. But what I loved was the sentiments inside the card that had me reflect on being a truly capable woman. If someone would have told me back in 2023, what I would be facing alone, and what I would have to learn on my own, I would never have believed it! NEVER! 

Monday, August 11, 2025

Monday, August 11, 2025

Tonight's picture was taken on August 9, 2009. This was a very special evening for Mattie. His child life specialist, Linda, arranged for the Lego Store, at our local mall, to host a building session with two master builders and Mattie. This session occurred after hours, so there was NO ONE else in the store! Imagine a child who LOVED Legos having the chance to be alone in the store with two master builders (guys who design, build, and maintain large-scale Lego models, often for attractions like Legoland or Discovery Centers). It was like a dream come true! When the guys told Mattie he could pick any kit in the store and they would build it together...... he couldn't pick one! Why? Because that year EVERY kit was purchased for Mattie, and there was nothing in the store he could build! Pause, think about that! That was how many hours we spent building with Legos in one year! Legos were our therapy, and working on those bricks were a positive diversion from focusing on the cancer treatment! In any case, Mattie decided he wanted to design a NYC yellow taxi with the guys! Mattie's first encounter with a NYC taxi was in September of 2008, when we went to New York to consult another medical team. Mattie loved the whole yellow taxi experience and now to this day, this yellow taxi sits behind me in my office! It is a memorial piece, and part of Mattie's legacy. 

Quote of the day: Kind words can be short and easy to speak, but their echoes are truly endless. ~ Mother Teresa

If you read yesterday's blog, then you know I had a very difficult Sunday. Given that I had to give my dad laxatives to manage his issue yesterday, today, I paid the consequence for that action. I will spare you the details, because you have to have a strong constitution, but when I tell you there was a mess in bed, all over pillows, and then in the shower, I am not kidding. It was an exhausting way to start my morning! No matter how much time I allot in the morning, it is never enough. 

While we were having breakfast, I received a text message from a man named, Matt. Matt is my service representative at Ford. Last Tuesday, I had my car serviced. I do it every six months, religiously! First I want to protect the life of the car and second, I want to make sure what we are driving is safe. Ford is super helpful to me, because they pick up my car at home and also drop it off when they are done, and this service is free! I can't tell you as a caregiver what a huge difference this makes to my life.

Any case, when my car was dropped back home to me last Tuesday, I noticed that my dashboard didn't look right. Something was missing! Keep in mind that last Tuesday was a nightmare in my house. I had Cody, the plumber, over, I had Semper Dry over assessing the water damage, and a host of other things. Therefore I did not have much time to focus on the car.

Within a day, I put two and two together! What was missing was this orange plastic lizard. You maybe saying... so what! Get another lizard! Well this lizard belonged to Mattie. In fact, Mattie kept this lizard in our other car and a green lizard in my former car. When we bought the car I am currently driving in 2016, I placed both the orange and green lizard on my dashboard. Also on my rearview mirror I have a beautiful plastic tulip that Mattie made for me. These are my three tributes inside the car to Mattie. So when one of the lizards went missing (and believe me I tore the car apart looking for it), I got upset. 

Last Wednesday, I wrote to Matt. I asked him whether he or anyone at Ford found an orange plastic lizard. The service people at Ford are busy! He could of said to me.... lady I have no time to look for a plastic lizard, or he could have simply said NO there was no lizard found. But that is not what he said. Matt looked all over the service area for the lizard and when he couldn't find it, he offered to buy Mattie another one. That is when I told him the story! Matt said he was so sorry to hear of Mattie's loss and I thought we put the lizard conversation to bed! But that wasn't the case. Matt continued to search the property for Mattie's lizard! He was passing his colleague's desk on Friday and on Kailee's desk, he noticed an orange lizard. She wasn't at work on Friday, so he waited until today to ask her about it. She told him that one of the car porters found the lizard and brought it to her. Funny story, Kailee is the unofficial lost and found in the service department. She has a drawer filled with all sorts of found goodies! Any case, Matt told her the story of Mattie and the lizard and this led to a text message to me this morning. Matt said.... good news.... we found the lizard. So after dropping my dad off at his memory care center, I went to Ford to pick up the orange lizard and to personally thank Matt for caring and being persistent. His act of kindness means more to me than he will ever know, and he and Kailee today made me see that yes there are kind and trustworthy people in the world. People who do things without an ulterior motive.  

This is the other side of my dashboard, with the green lizard! Now my dashboard looks back to normal! If you know anything about me now, then you know that I read into the orange lizard disappearing. Remember this lizard was in our other car at one time. So with this orange lizard disappearing, I took this as some sort of sign in the universe about what happened to me. Yet unexpectedly this lizard came back, which to me is Mattie telling me he is seeing everything and knows everything that has gone on.

This whole lizard story today has touched my heart. Then of course, as my life has it, nothing ever goes smoothly. I had wi-fi go out in the house and had to figure that out! Which in my house is a major crisis, and what I despise about the house, is everything seems to require wi-fi to function. Once I figured all of that out, I decided to help my mom with her hair this evening. On Thursday, it is my parent's 65th wedding anniversary. I am taking them out and I wanted my mom to feel good about herself. Washing and styling hair is NOT new to me. I have been doing this to friends since I was a kid!

Tonight, right before bringing my dad upstairs to bed, he had another bathroom accident. The whole thing got to me, so I am drinking ginger ale and typing this, but guess who sent me another sign tonight... yes my Mattie. While washing my hands at the kitchen sink, look what was staring right back at me at 10:30pm.... a beautiful grasshopper! INDEED a Mattie sign!!!

Sunday, August 10, 2025

Sunday, August 10, 2025

Tonight's picture was taken in August of 2009. Mattie took Speedy Red for a spin in our commons area! Though Mattie only drove Speedy Red for about 2-3 weeks, it was an important purchase. It was in essence his last wish and therefore we were going to make it happen no matter what. I have to admit that I was nervous with Mattie driving, after all he had a Broviac Catheter coming out of his chest, he was connected to a pain pump and was on a portal oxygen machine. When Mattie first started driving, I sat in the passenger seat (or squeezed into the passenger seat) in order to guide his driving and provide instruction. But overall, Mattie caught on right away! I can remember this moment in time like it were yesterday! I also look at our commons area and say to myself..... we should never have left the city. Moving to our current house changed my future forever. 

Quote of the day: Betrayal annihilates trust. The more trust there is to begin with, and the more deception is involved, the more damage is done. ~ Sandra Lee Dennis

Overall it was not a good day. I had trouble falling asleep last night and was up to around 3am. Of course now that the fans are gone, Indie was banging against my bedroom door at 7am. So I woke up tired and then the rest of the day did not go according to plan. Typically on Sundays we go out to brunch, but not today. Yesterday my dad was dealing with an allergic reaction to medication and today, he was dealing with constipation. Needless to say, trying to rationalize with my dad about his bodily needs is close to impossible. Most days I can put his Alzheimer's into perspective, but then there are days like today, where it is so challenging, I want to jump out the window. 

By 2pm, I had to get out of the house! I couldn't go far, so I went into the backyard and spent two hours weeding and watering plants. I needed that outdoor time to equilibrate. It was a difficult weekend on every level and it is in these tough moments, I naturally reflect on the impossible.... life without my husband. I have a feeling no amount of time will enable my brain and heart to accept this reality.