Wednesday, April 16, 2025

Wednesday, April 16, 2025

Tonight's picture was taken in April of 2009. Mattie was home from the hospital after a treatment. We were never home for long, as Mattie would develop a fever and we would have to turn right around a day or so later for the hospital. This photo captures a private moment at home. Mattie suffered from pain, depression, and anxiety. Which was extremely painful to witness as his mom. Most of the times, I was strong and put up a brave front for Mattie, but there were these quiet moments when the reality got to both of us. 

Quote of the day: The law of evolution is that the strongest survives!' 'Yes, and the strongest, in the existence of any social species, are those who are most social. In human terms, most ethical...There is no strength to be gained from hurting one another. Only weakness. ~ Ursula K. Le Guin

I woke up this morning at 5:30am. Why? Because the HVAC expert was coming between 8 and 8:30am. I had to allot time to get myself ready, do morning chores, and shower, dress, and get my dad downstairs before this professional came over. There is no way I can juggle interfacing with anyone and managing my dad, unless he is downstairs and dressed. I have learned this the hard way! Since I am the only adult on duty in my house, I can't be distracted when trying to resolve a household issue. 

After a week worth of phone calls, putting my complaint in an email, and then finally demanding to talk to a manager yesterday, I secured a visit from their team expert, who happens to not only understand HVAC issues but electrical problems. Jonathan was with me today from 8:30am to 12:30pm. He rewired the control panel in the attic, replaced a sensor which communicates to the thermostat, reconnected the Wi-Fi capability to the thermostat and the list goes on. He truly was a God sent. We even worked on programming the thermostat together and he did not leave until he was convinced that the problem was addressed. Best of all, he charged me nothing, as all this work was covered under the warranty I have with this company. All I know is today we had heat on the second floor. I am hoping this is a trend. I don't want to speak too soon, because around here, nothing goes according to plan. But can you imagine we survived all winter without heat on the second floor? 

In the midst of juggling Jonathan, my mom's physical therapist came over. Since her reporting of issues isn't always accurate, I had to be present. I discussed with the therapist one of my mom's issues. She is a toe walker. That means someone who walks with their toes up in the air. Typically with age, the toes scrunch the floor, trying to grab on and help with balance. But in my mom's case the opposite is happening. This is impacting her balance, makes her a candidate for falls, and the problem is she has seen four doctors regarding this problem. No one has been helpful, but I am convinced it is a neurological issue and associated with her Parkinson's condition. But imagine walking and your toes are constantly rubbing against your shoes. This causes my mom to have extreme toe pain, and she lands up wearing sandals and socks all the time. Regardless of whether it is raining or freezing out. 

I also followed up on my MRI and Prolia script. So far my insurer has denied both. But today I was able to schedule the MRI at an outpatient radiology center, which supposedly is covered by insurance. Because I have never had scans at this center before, they require me to provide them with all prior images for comparisons. I literally said to myself.... I DON'T THINK SO! So I reached out to my doctor's office and they are getting the hospital to forward all my films to this outpatient center. Thankfully, one task down. 

Then I connected with my endocrinologist's office. If you are a loyal reader then you know I can't take this office! I think it is poorly run and my doctor's nurse needs sensitivity training. She has refused to answer my health insurer's questions regarding why I need Prolia. She insisted she knew the system and therefore was just going to reapply for authorization of the drug for me, rather than complying with the insurer's request. Of course she was wrong. The health insurer denied the request again and told her she HAD to complete the necessary paperwork! Which finally, over a month later, she did it. So let's see if I can access to a drug, a drug which I have been taking for two years now.

The highlight of my day, is I looked out the window and I saw my first hummingbird for the season. The same hummingbirds return to my backyard each year! I say this because today's bird flew right to the place that I normally hang my sugar jars! Any case, I got it in gear this morning and made sugar water for my feathered friends. My dad loves seeing the hummingbirds fly by while we are eating at our kitchen table, so he is excited to see the sugar jars are back up for the season! It is the official sign to me that spring is here. 

I close tonight with a song I heard on the radio yesterday. It is by Dylan Scott, and it is titled, What He'll Never Have. To me it is a touching song. He sings about the special love he has with his wife, however, he tells her that if for some reason he happens to die before her, he wants her find someone new. That said, he makes it clear that her next husband could drive his car, walk his dog, or drive his truck. But what that guy will never have is the love he has for his wife. Meaning, THAT LOVE is NOT replaceable. That love is paramount, never ending, and forever. This song has put into words the way I feel about love, the way I love. 

Tuesday, April 15, 2025

Tuesday, April 15, 2025 -- Mattie died 790 weeks ago today. 

Tonight's picture was taken in April of 2009. Mattie celebrated his 7th and last birthday in the hospital. As you can see, Mattie received a ton of balloons. It was a day filled with presents, games, friends, and of course cupcakes. You would think that spending endless days in a hospital was hard. Certainly it was in the beginning, as I had to say good-bye to freedom and privacy. Not to mention that we lived on the edge constantly managing Mattie's medical care. But despite all of that, we met amazing women in the hospital who cared for us 24/7. They became our medical family and when you live with people for weeks and months on end, you get to know one another very well. I am quite certain that Mattie chose to die at the hospital because he trusted, loved, and knew that his medical family could provide the support he needed. 

Quote of the day: It is always easier to die, simply to give up, to surrender and let the pain die with you. To fight is to keep pain alive, even to intensify it. And this requires courage for which i had only admiration. ~ Louis Lamour

They celebrated my dad's 90th birthday today at his memory care center with cupcakes! The staff told me they can't get over that my dad is 90, as they feel he looks like 70. Very sweet! Everyone sang happy birthday to him and he felt special!

This morning, I stopped off at Lowes and bought a few plants. Since I am hosting Easter dinner at my house, I wanted it to look somewhat springy! I was going to buy flowers, but then decided to get plants. As I can then plant them in my garden! The highlight of my day today was going to the garden store and then planting in the garden. Other than that, it was a hard day. 

When I got home from shopping, I dealt with several tasks. I found out for certain that my health insurer denied my ability to get my MRI tomorrow. However, they did approve it at an outpatient radiology center. So I will need to schedule that scan. I continue to fight my HVAC company because I want them to find a creative solution to the fact that we get NO heat or air on the second floor. All weekend long, the company called me, trying to sell me a NEW furnace. Mind you I did not ask for these solicitations! By the third call, I lost it. I put a complaint in writing and today I called and told the woman on the phone that I wasn't hanging up until she found a manager for me to speak to! Guess what? They understood! Tomorrow a senior technician is coming over and together we are going to figure out what the problem is and they know the solution CAN'T be.... purchasing a new furnace. I am so worn out from advocating and fighting! 

Truly my blood pressure went sky high today dealing with that and then dealing with a gift order I tried to place an order for a child with cancer. Mattie Miracle granted him a wish and he asked for gaming gift cards. All I can tell you is the order wouldn't go through and then Amazon shut down my account. In all fairness, Amazon did the right thing! As I never have purchased gaming cards before and they flagged my order as fraudulent, cancelled it, and then required me to create a new password. I really appreciate their level of security. But remember technology isn't my strength. It took me a while to figure out how to get onto Amazon's customer support. The issue was with me, but then I figured it out and their support team was great. So between this issue, the HVAC system, and my health insurer my head was spinning by 2pm. 

But instead of taking a deep breath and regrouping, or resting, NO, my mom was pacing and wanted to go out. So I felt great pressure. She wanted to stop off at the bank first before getting tea. When I walked into the bank, the bank manager, who I have gotten to know VERY well since my separation, came over to me. She said I looked white as a ghost and not well. She immediately asked me to sit down and wanted to make me tea, because she understood I was dealing with a massive migraine. Truly I have the best bank around. From the bankers to the tellers.... they all know me. I am grateful to have their support, because remember while married I did nothing financial. Not even balance a check book. My learning curve hasn't been steep, it has been monumental. 

As the afternoon wore on, I tried to stay off the phone and email. I needed to get away from all electronics and regroup. After I brought my dad home, I went out immediately to start planting the two plants I bought. I also spent a lot of time cutting back bushes that got snow burned in the winter. The winter has NOT been kind to my garden.

I love Mandevilles! Or trumpet flowers! The watering cans are something that my husband bought soon after we moved into the house. They are Mattie Miracle colors! I put them out every spring. 

I fell in love with this plant today... a clematis. The color is beautiful and I love the vine like nature of this plant. We shall see if it likes my front door flower pot! I have a hard time growing things in this pedestal pot. 

The clematis! I only planted two plants, but it perked me up. Buying plants, schlepping them home, and planting them is hard work. So I can only do things in piecemeal now. 

Monday, April 14, 2025

Monday, April 14, 2025

Tonight's picture was taken in April of 2009. That afternoon, we took Mattie to the hospital garden. This was a place we escaped to on warmer weather days. I will never forget that space, because it provided us freedom from the hospital unit, the ability to see greenery, and to get fresh air. If you haven't experience the dry and cold air within a hospital, then you are lucky. After a while, it feels very sickening. What this photo captures is me with my all time pal. Mattie trusted me to make the right decisions about his care and it was very daunting knowing that I held the life of Mattie in my hands. There wasn't anything I wouldn't have done to help Mattie, but what cancer taught me is that wishes, prayers, and all the best intentions sometimes can't change the outcome. 

Quote of the day: The greater the difficulty, the more glory in surmounting it. Skillful pilots gain their reputation from storms and tempests. ~ Epictetus

Today did not go at all as I had planned. I thought my dad was going to go to his memory care center this morning. However, since he was discharged from the hospital on Saturday, his in-home care agency had to send the nurse to assess my dad and as well get a physical therapy evaluation. All of which HAD TO HAPPEN TODAY! I have to tell you, I do not like surprises. I would have preferred knowing this on Sunday, so I could have better prepared for today. My dad's in-home care agency was just lucky that I did not have anything else scheduled today, so that I could keep my dad home for the day with me. But since I care for my mom as well, I juggle her needs and doctor appointments too! 

Any case, in between juggling these appointments I also had a Mattie Miracle board meeting. I am fighting to get a breast MRI, and don't get me started about my second floor furnace. Which doesn't work! Truly by 2pm, I felt like I went ten rounds. Jumping from one task and need to the other. Of course, neither of my parents can interface with the health care professionals alone. I must be present, to answer questions, provide a summary of my dad's hospitalizations and current medications. 

It is 6:15pm, and I am so anxious and need to do something. Which means, tonight's blog will be shorter, because I am headed outside to the garden to do more painting of my deck. Until tomorrow. 

Sunday, April 13, 2025

Sunday, April 13, 2025

Tonight's picture was taken in April of 2002, shortly after Mattie was born. My parents were visiting for California. Keep in mind that I gained over 50 pounds while pregnant with Mattie. As you can see, even after he was born, I was much larger than my pre-pregnancy weight. I literally was filled with fluid, you could poke a finger into me and you could see an impression left from the finger. It took me almost a year to return to some sort of more normal weight. I was also dealing with recovering from an emergency c-section and had developed post-partum depression. What I will never forget, is that people kept asking me if I was pregnant again, because I was so big. Rest assured that did not make me feel good, when I was already struggling physically. Mattie and I went through so much together, we learned a lot from each other, and his presence is missed each and every day. 

Quote of the day: He’d trade anything to be back there in the past, rather than to deal with what was going on in the present. ~ Jason Medina

Today was my dad's first day home after 4 days in the hospital. When I woke up this morning, my mom was already up and in the shower. I decided to peek into their bedroom to check on my dad. Sure enough he was wandering around the bathroom unsure of what to do! His trigger to get up, and his confusion occurred because my mom was out of the room. So I helped him back to bed and propped him up with pillows and turned on his heating blanket. 

After I got myself together and made breakfast, I then went upstairs to get my dad up! Sure enough, my mom moved away all the pillows I arranged under my dad's arms and legs. This leaves my dad in a very strange and awkward position. Which triggers backaches. No matter how many times I tell her NOT to MOVE the pillows, she moves them. Her memory issues are quite significant, so much so that she did not recall changing my dad's depends this morning. I always know when a depends is used during the night or early morning, because I only leave ONE in a basket. It is the best way I have learned to track what is going on. My dad is unable to put on a depends himself, which means my mom has to be involved in the process.

My dad needed a good shower this morning, as he did not bathe since Wednesday. In the hospital, they no longer bathe or shower patients. It is a liability because a patient could slip or fall, and get injured. The problem of course is that patients land up not getting fully clean each day. Which of course isn't good for their skin. What I forgot to do during this admission was shave my dad each day! Wow this morning was overwhelming. Normally I use an electric shaver on him, but his beard was too thick for the shaver to work. I literally did not know what to do! I never used a razor on him or shaved any man for that matter, so I was hesitant. But then I rationalized with myself. I have been able to maintain this house and do the impossible each day, so for goodness sakes... how hard could shaving be? So I got out the shaving cream and shaved him! He did not like how it felt, but I did not nick him and there was no bleeding! So I have mastered shaving. My resume is growing!  

If you ask my dad where he was yesterday or for most of the week, he has NO IDEA! I then asked him about his time in the hospital. He is clueless, he doesn't recall being in the hospital. I know he can't remember one minute to the next, but I would have thought the experience of being somewhere different, would have registered on some level. My dad is like a sieve, things come in, but they don't stay, they immediately leave his mind. Which is why he can't recall where my husband is, he can't recall he was in the hospital, or that he had sepsis, and today I could see that he really remembers nothing about his own brother. All I can say is Alzheimer's is quite a disease. Fortunately my dad is good natured, loves his family (or what he can remember of it), and is appreciative of all that is done for him. 

Meanwhile, my mom continues to have issues with her feet. I have been struggling with her toe pains for months now. I have taken her to four different doctors and none have solutions. Two nights ago, I cut her toenails very short, hoping that would help. It helped for one day, and now the pain is back. It is very overwhelming because even in rain and cold weather, she is wearing socks and sandals. Her walking is beyond awkward and her in-home physical therapy can't start soon enough! 

Later today, the sun was out, so I continued the exterior painting that I have been working on. Given that I always start things later in the day, I can't spend much time working outside, because it gets dark. But I take it one day at a time, and do the best I can do. 

As Monday approaches, I need to call my insurer to find out if I need to cancel my breast MRI scheduled for Wednesday. My doctor's office has been trying to advocate for my care, but since I haven't heard that the scan is approved, there is no way I am paying out of pocket for an MRI. Then I also need to call my HVAC company. The second floor remains COLD, my parents are uncomfortable, and I have to get a handle on this problem. The HVAC company wants to sell me a new furnace, and I am in NO MOOD for their hard sell. I want them to think creatively to figure out a solution that DOESN'T involve a new furnace. I am SO SICK of fighting each and every day for something, and when I am not fighting, I am dealing with a crisis. I live in a state of constant hyperalert, and I truly can't believe that the one person I counted on to support me and to be there for me to death do us part, has forgotten me completely.