Wednesday, April 2, 2025

Wednesday, April 2, 2025

Tonight's picture was taken in April of 2003. We were celebrating Mattie's first birthday and the theme was ELMO! Mattie absolutely LOVED Elmo. In fact, Mattie would multi-task during Sesame Street. But when Elmo came on the screen, Elmo's voice would stop Mattie in his tracks! Mattie would be glued to the TV in the presence of that furry red character. If you look closely in the photo, you will see Mattie was in tot wheels and checking things out!

Quote of the day: When you go through something, you learn to appreciate little things – the birds, trees, flowers. ~ Grizz Chapman

This morning, I got up at 5:30am, in order to get myself ready, my chores done, my dad washed, dressed, downstairs for breakfast and then to his memory care program, so that I could then drive to the hospital for a blood test. Truthfully by the time I got to the hospital, I felt like I had a FULL day! The hospital is about thirty minutes away, so basically I drove an hour round trip. When I got back home, I juggled laundry, grocery shopping, and emails. 

Over the last week, I have been working with Nate, a professional power washer. For the most part I try to do everything at home on my own, if I can. But after talking to my landscaper, I realized I needed HELP. There was no way I could professionally clean our stone patio, clean our deck, stain it, and seal it on my own. I sent these before and after photos to Nate today, because I just can't get over how he transformed our space. 

When we bought this house, I fell in love with the on-line photos first, before ever seeing the actual house. I found the porch and backyard had southern charm, and was like a private oasis. However, in order to keep the beauty of this area up, it requires a lot of attention. It is a daily task that I take on. But no matter how hard I work, I could never accomplish what Nate did in a week! 

This was the BEFORE photo of our porch. You can see the wood turned different colors and was a mess. 

This is the AFTER photo! I spent two hours re-assembling the space this evening. I literally was carrying chairs, plant stands, flower pots, and moving rugs. I then dragged out the vacuum to clean the rugs. I just can't get over how clean the spindles are, they are no longer green from algae! Though I prefer a cherry colored stain, I was advised that this stain will last longer as it is meant for this IPE wood. 

Meanwhile, I think the most dramatic change is the stone patio. This is the BEFORE photo. Looking at this, you would think the stone was grey!

This is the AFTER photo! I just can't get over what power washing was able to accomplish. The stone has color and life. 

I would say the last two weeks have been filled with new challenges and experiences. Everything from:

• Dealing with Ricki Raccoon. Trapping him, removing and dumping large items that were destroyed in the shed, disinfecting the space, and then beginning a more intensive clean out. 
• Raccoon proofing the roof.
• Patio and stone cleaning.
• Flushing the sump pump.
• Managing the septic tank pump out. 
• Computer/technology tune ups.
• Health insurance paperwork. 
• Taxes.
• Fighting my health insurer for medication and a MRI.
• Literally the list just keeps growing.............. and today, I actually used a coinstar machine for the first time ever! I had a large collection of change and when I don't know how to do something, I first get nervous about doing it, but then charge forward. I asked the fellow at the Giant store today how the machine worked. He told me to follow all the instructions on the screen, and that I would find it easy! He was correct. 

But the hardest two things I have had to face in the last two weeks is seeing my husband move his belongings out of the house and visiting Mattie's tree alone to honor his birthday. I have had to live my life without my husband since September of 2023. Now a year and a half later, has it gotten any easier? The answer is NO! No for many reasons. Like losing Mattie, another loss against my will, it is not something I have ever gotten over or have moved forward from, but I would say these are traumatic losses that have become part of my life. They become more familiar, but NOT any less painful. 

Tuesday, April 1, 2025

Tuesday, April 1, 2025 --- Mattie died 788 weeks ago today.

Tonight's picture was taken on Mattie's birth date...April 4, 2002. I think seeing the nurse's hand gives you some understanding for Mattie's size. What I love about this photo was despite the long birthing process, look how alert Mattie was!!! I love that he had one eye open and was taking it all in. 

Quote of the day: Life is a shipwreck, but we must not forget to sing in the lifeboats. ~ Voltaire

I woke up this morning to learn that my dad's dear friend in California died. He had been struggling with cancer. Though my dad is out of it, and has trouble remembering anyone, he has never forgotten his friend, John. I practically grew up with John. When I was in high school, John joined us every Friday night, when we went out as a family for pizza. So we have known each other for decades, and we celebrated many holidays together. I think it was frustrating for my dad, not being able to see John since he moved to Virginia. Tonight, when my dad asked how John was doing (a daily occurrence), I had to tell him that his friend died. It wasn't easy to do, but we shall see if he remembers this news. With my dad, I find that I relive each day and painful memories countless times. 

After I dropped my dad off at his memory care center today, I came home and called the Geek Squad. I have been told that all computers need monthly/bimonthly tune ups. Just to make sure there are no corrupt files, that new version of things can be uploaded, that security is being maintained, etc. Since this is the first tune up I ever did, I was a bit nervous. But they made it super easy and talked me through the process. At first I was juggling my mom's computer upstairs and mine on the first floor, but I eventually had to bring my mom's computer downstairs, because I was running up and down the stairs every two minutes. Any case, I checked another box..... computers have been tuned up!

Another wonderful surprise is when I wrote to my breast specialist's office over the weekend, they wrote me back and they offered to call my health insurer for a peer to peer consult, to advocate for my need to have a breast MRI. I did not even have to ask, they suggested this to me! Compared to dealing with my endocrinologist's office, who prescribes Prolia, this office is a night and day experience. My endocrinologist could learn a thing or two about patient centered care! As the Prolia saga continues! 

Last week, I started working with a professional power washer. I got to meet Nate, through my landscaper. Our outside patio has beautiful flagstone, but you would never know it because it had turned black. You can see the right side of the photo, this was how the whole patio looked. Versus the left, which was cleaned today! Nate thinks this stone hadn't been professionally cleaned in at least ten years. 

Note that I thought I could do this myself! I truly was thinking of taking this on, until my landscaper basically told me.... NO! He knew it would be too labor intensive for me and I wouldn't have access to professional grade equipment. He was absolutely correct, and I appreciate his honest help. 

Do you see how beautiful the stone is? I have never seen it looking this way, even when we bought the house in 2021.

The other project Nate has helped me with was with power washing, staining, and sealing our porch. This was another project I was going to take on myself, but once I realized I had no idea what I was doing, I decided I needed help. The last thing I want to do is ruin the wood! Once it is dry, I will snap a photo of it. 

Today, I had many down moments. Could it be knowing what has happened to my life, to my marriage, that my husband's things are now moved out, that Mattie's birthday is this week, or that I am caregiving around the clock? Maybe all of the above! I truly live each day perplexed and disillusioned. Normally I hate going to the mailbox, because I am greeted with bills. But today, this beautiful and heartfelt card was in the mail from my friend Jean. It brought a smile to my face, as does every comment, email, and text message I receive! 

Monday, March 31, 2025

Monday, March 31, 2025

Tonight's picture was taken in March of 2007. That spring break we took Mattie to Key West, Florida. Mattie took to sunshine and outdoor activities like a duck to water. Mattie was fascinated by this traveler's palm. So we snapped a photo of him with it, to always remind Mattie of his Key West adventure. I honestly never thought that these photos were going to be Mattie's legacy items, and the only things I would have left of him. At that moment in time, I really thought we would have a lifetime together. I would never have guessed that I would have landed up like I am now..... a bereaved, divorced mother. 

Quote of the day: We don't even know how strong we are until we are forced to bring that hidden strength forward. ~ Isabel Allende

We had an early start today. My dad did not go to his memory care program, because both of my parent's had appointments to see their rehabilitation medicine doctor. This doctor came into our lives in 2022, when my dad had pacemaker surgery. That surgery landed my dad in the hospital for a week. In one week's time, my dad had trouble getting out of bed, walking, and functioning independently. I will never forget how hard I advocated for him to go to the hospital's acute rehab program rather than be placed in a nursing home. A nursing home would be the beginning of the end for my father. It was in that acute rehab program that we met the doctor we saw today. Both of my parents see this physician every four months. 

Each time this doctor meets with my parent's, he asks how I am doing! As he is abundantly aware of my intensive caregiving routine. There is no point in sharing the complexity of my life with this doctor, because it isn't something one can convey in a few minutes. In any case, this physician enables my parents to get in-home physical therapy throughout the year, which for my parents is crucial. As there really is no benefit for them going to an outpatient program. They both have memory issues and schlepping them to the hospital only provides more stress for all of us. I am also very cognizant of my parent's decline in energy level. 

In addition to the doctor visit, I went to the Foundation's post office box, and then to visit Mattie's memorial tree. I try to visit Mattie's tree, which is located at his elementary school, on birthdays, holidays and other milestone moments. It has become my tradition, almost like when people visit a cemetery. 

When we got to Mattie's school, there were no cars or students on the playground. It was truly perfect for me, clearly the school was out on break. It gave me time to be with the trees, clean up Mattie's main tree, and decorate it. 

I took a photo like this, because Mattie literally has three memorial trees on campus (all in a row). Not on purpose, but because one after the other either died or got injured. So more were planted. Literally the first tree planted died. It was an red oak and got some sort of plight infection. Then the second tree was planted in its place. It is a tree with issues and to this day, I call it the Charlie Brown tree (because it looks pathetic). So then a third tree was planted, a yellowwood tree. That tree got hit with lightning, and it split. I did not like the symbolism of a damaged tree, so the fourth and final tree..... a white swamp oak was planted in 2018. So if you are following, there were four trees planted (from 2010-2018), one officially died, therefore, there are THREE trees still alive and standing. That is why I call it Mattie's grove.

This is the fourth and final tree. The school just placed a new memorial plaque by the tree as the last one got damaged. When this tree was planted seven years ago, it was so much smaller. 

See below..................................

Planting day on September 8, 2018 (on the 9th anniversary of Mattie's death)! Tim, the arborist (in the front kneeling with a green shirt), planted all four of Mattie's trees. He felt that this fourth tree needed positive energy to make this one a success! Therefore he suggested I invite friends to gather around the tree. Tim gave me one day's notice. So the day before planting day, I text messaged friends! See how many friends showed up! These are all the amazing people Mattie connected us to and who remain a part of our lives!

I have been told that kindergarteners call Mattie's tree the twinkling tree! Why? Because it has many shiny ornaments hanging from it. Over the years, we have hung awareness ribbons, toy cars, sunflower ornaments, ornaments with photos, and today I hung butterfly ornaments! The children are correct.... the tree does twinkle!

Mattie's memorial plaque. 

This is the yellowwood tree, in other words tree#3. If you look at the ribbon closely, you will see that the trunk of the tree is split. Split from lightning years ago. Yet this tree is a fighter! Though I no longer decorate it, I always tie a ribbon around it. You will also notice that we planted daffodils around the tree years ago!

It is hard to believe that on Friday, Mattie would have turned 23 years old. I do not know how that is possible and I can't wrap my head around the mere fact that he has been gone longer than he was alive. I face life surrounded by countless losses, and naturally I am not sure I will ever get over the fact that I now visit this tree without my husband. That I am carrying Mattie's life, legacy, and memory alone. All I can say is Mattie is alive and well with me. I hope he continues to walk this journey with me, and that he sends me signs of hope, strength, and love.  

Sunday, March 30, 2025

Sunday, March 30, 2025

Tonight's picture was taken in April of 2002. It was five days after Mattie was born, and I was getting discharged from the hospital to take Mattie home. I was in such bad shape, that the nurse questioned me by saying..... do you really want to go home? Meaning they could have made a case for me to stay longer. I was filled with fluid, had pain from the emergency c-section, I was exhausted from two days of labor, I was developing post partum depression, and then living in a hospital for five days being constantly interrupted I was strung out. I had enough and felt like it was time to go home, because as I told the nurse.... eventually I would have to figure out how to care for myself and Mattie. 

Quote of the day: One’s dignity may be assaulted, vandalized and cruelly mocked, but it can never be taken away unless it is surrendered. ~ Michael J. Fox

My health insurer has now let me know I have been denied two things. So far, I  am fighting to get access to the bone density drug, Prolia, and the latest denial is for a MRI of the breast (mind you they covered it last year). After meeting a breast specialist last year and enduring an extensive history, she has classified me as high risk for breast cancer. 

I have been on a journey with this doctor, because she had me have a consultation with her genetic counselor. This was several months ago. I literally gave the genetic counselor an education, as I found her demeanor truly lacking! I loved how she referred to herself as a counselor, who has as much training as someone with my degree and license. THAT DID NOT SIT WELL WITH ME, particularly because I know that is incorrect. How do I know this? Because I sat on the Washington, DC Licensure board for counselors for over 15 years. I knew the ins and outs of our laws and regulations, and don't you know it, genetic counselors came before my board often, asking to apply for our mental health license. They would make a case that their education and training was equivalent to mine. Which meant that I had to understand their curriculum and training requirements first before being able to make a decision. After a lot of reading and delving into this issue, I was able to determine FACTUALLY that genetic counselors are NOT equivalent to a mental health counseling degree. 

I truly resented having to see a genetic counselor. First of which, she tried to push a battery of tests on me, most of which aren't covered by insurance. Then she let me know that if any of the tests indicated that I had certain genetic markers for cancer (they test for breast cancer, but MANY OTHERS), this will make it hard for me to get health insurance if I changed my current plan. Truly insane, what a system! Now if all of that did not get me, then it was the total lack of regard for my psychosocial state or what was going on in my life! Don't you think it would have been important to find out if I was going through a major life change at the moment, before taking on such testing? At the time I was separated and knew a divorce was imminent. Which also meant that I knew my health insurance was going to change! I am also quite aware of the fact that I have no support at home for myself. Therefore, if I get sick, God forbid, I am up a creek. This is NOT a good time in my life to hit me with genetic testing, but of course if you don't ask questions, you then are ill informed about my life and whether testing would be a good fit for me. I lectured her, because I wanted her to know how insensitive she came off and if she was going to provide ethical medical care, she needs to stop, think, and invest in the whole patient. 

What I concluded is that testing or no testing, my current treatment of scanning every six months, would remain the same. Why am I telling you all of this? Because, I find it absolutely incredible that a health insurer would deny my authorization for scanning, when a doctor deems it necessary. I am not sure why I am surprised, since I think the healthcare system is broken. Doctors are NOT in control, the insurer is, and the insurer is more concerned about the bottom line and not the patient. I juggle so much in any given day, and now I have to add fighting the system to get access to the preventative care that I need. 

Typically we go out every Saturday and Sunday, but my mom wasn't up to going out yesterday. But today we did go out for brunch. Some days if I sit back and observe my life, I can get very depressed. My dad can't remember anything from one minute to the next. He could eat something and two minutes later, he can't recall whether he ate or what he ate. His memory loss is so significant that he has NO short term memories, and has little to no long-term memories. My dad doesn't recall living in New York, he doesn't recall living in California, he doesn't recall his work, his colleagues, and the list goes on. In addition, he doesn't understand what happened to my marriage and when he sees my husband's car now, he asks me why it is parked where it is versus at our home. So in a way, I experience the loss of my marriage daily in so many different ways. 

A day or so ago, I was talking about Mattie. My dad had no recollection that Mattie had cancer and that he died from cancer. My dad has no idea what month my birthday is and this may sound sad for him, which it is, but it is very depressing and frustrating for me. I am the only one in my house with an intact memory. My mom is certainly better than my dad, only because she tries to cover and mask her issues. However, she will listen to the same podcast over and over, watches recorded programs over and over, and isn't aware of the fact that she has seen or heard them already. Her ability to read and process information are almost non-existent and I think knowing what I am enduring with my marriage has taken a large toll on her. 

I face so many little and large scale losses on any given day. It is a wonder I can function. Tomorrow, my parent's see their rehab medicine doctor. Since the location of that office is closer to where Mattie's memorial tree is located, I decided we are visiting the tree before the appointment. On Friday, April 4, Mattie would have turned 23 years old. Visiting Mattie's tree has always been hard, but now I visit the tree alone, I parent Mattie's memory alone, and I carry on his Foundation alone, and the keyword in my life is ALONE. ALONE BUT NOT BY CHOICE.