Saturday, March 16, 2024

Saturday, March 16, 2024

Tonight's picture was taken in March of 2009. That day we took Mattie to see the circus. The hospital secured a private booth for us and Mattie was very excited to have this new experience. We had never taken Mattie to the circus before. Mattie loved the whole thing and during intermission, we met up with his cancer buddy, Brandon who was also in attendance. We bought Mattie several glow in the dark circus items and overall I would say it was an unforgettable day. 

Quote of the day: Of all the animals, surely the dog is the only one that really shares our life, helps in our work, and has a place in our recreation. It is the only one that becomes so fond of us that sometimes it cannot go on living after its master dies. ~ Ferdinand Mercy

Look at this cute face! Sunny was the world's best pooch. In so many ways, I felt he was a gift sent to me from Mattie. Sunny may have had fur and paws, but he had so many human qualities. He was loving, compassionate, bright, and at swear he understood how I was feeling. I will never forget the happiness he brought to my life. He filled up our home after Mattie died, and once again I am faced with a space that feels empty inside. 

Tonight's quote reminds me of my uncle and his dog, Atom II. My dad's brother died at an early age (many years ago) of a brain aneurysm. He understood he was ill and in his will he made a special note about arrangements for Atom II after he died. He did not want Atom II to live with anyone. He did not want Atom II to be adopted! Instead, he wanted Atom II to be put to sleep. From my uncle's perspective, he felt that Atom II would not survive without him. That no one would understand his anxious state or be able to care for him like my uncle. This decision plagued me all my life, as I felt then as I do now, that Atom II could have lived with us. 

My dad was the executor of my uncle's will, and though we tried to encourage him not to follow through with his brother's request to put a health dog to sleep, we were unable to convince him. My dad felt a sense of obligation and to fulfill his brother's last request. In fact, I remember my dad saying something like.... I do not want my brother haunting me if I do not follow his wishes! I honestly do not know if I would have taken on such a role if I knew it meant ending a dog's life too soon. 

I think about Sunny! I am quite certain that Sunny's original owner died and then the owner's family did not want to keep him. Therefore they tossed Sunny out on a highway in South Carolina. This was the basis of the story that was conveyed to me when I adopted Sunny. Clearly Sunny and his original owner had a strong connection and bond. They must have because Sunny was impeccably trained which made adopting him super easy. Here's a classic example of how adaptable dogs are and if introduced to a kind and loving home, they can thrive and live a happy and fulfilling life. All I know is thank goodness, Sunny's original owner did not request for Sunny to be put to sleep upon his death. If he had, I would have missed out on 8 wonderful years of being a dog Mom. 

Overall my daily existence is bordering on terrible to toxic. I am balancing incredible amounts of stress with balancing finances, paying bills, caregiving for two people with dementia and other physical issues, and of course balancing all the emotions that get thrown at me at any given hour. Because of my mom's dementia and issues, she can get stuck on a thread of conversation and play it over and over again. I am dealing with my own grief, loss, and traumas given what has happened to my marriage, but my mom's constant outbursts and negativity weigh me down. All conversations and focus must revolve around her, and yet given what I am coping with, support and help should be directed to me. But I know I come last in my home. I have come to accept this reality over the last two years, but what I am balancing requires super human strength and courage in order to try to find a way forward. 

Friday, March 15, 2024

Friday, March 15, 2024

Tonight's picture was taken in March of 2009. Mattie was home between treatments and his friends gave him all sorts of shamrocks and clovers for St. Patrick's Day. Mattie loved the glasses and I remember one day he even wore them to the outpatient clinic. I can't tell you how much a card, gift, or surprise meant to Mattie. Honestly they were the diversions that got us through each and every day. Kindness, generosity and love.... all freely given to us by Team Mattie. Never to be forgotten! In our darkest hour, I got to see the power of community.  

Quote of the day: Dogs die. But dogs live, too. Right up until they die, they live. They live brave, beautiful lives. They protect their families. And love us. And make our lives a little brighter. And they don’t waste time being afraid of tomorrow. ~ Dan Gemeinhart

This photo was taken in March of 2023. Amazing how different a year can look. Sunny was diagnosed with cancer in March of 2022. Throughout his cancer journey, the disease started to truly impact his energy. Sunny spent more time resting, but LOVED being outside. He loved the porch and his backyard, until the VERY END. Sunny wanted to be outside in all sorts of weather, so we bought him a large outdoor heating pad for the couch. He spent so much time in this exact location. 

Now, every morning, I greet the day by looking out at the couch. It is the first thing I do when I come downstairs in the morning. I don't know... maybe I hope to find my boy looking back at me. I remember my beautiful white and tan fellow regaling this spot. 

When you keep in mind the story above,  looked who was outside my window this morning! I miniature version of Sunny. Truthfully at first I had to do a double take. 

This fox has been visiting us now for months. However, this is the first morning, he took to the couch. I noticed the fox did not startle with my noise in the kitchen and given that this was unusual behavior, I was very suspect. 

When the fox turned around to look at me, I noticed he was missing most of its fur, its tail had no fur on it, the fur around his eyes looked crusty and he was constantly scratching. I knew he has Mange. Which is a parasitic infection, like scabies in humans. In fact, Mange is also contagious to humans. I immediately called animal control in Fairfax. The person was lovely on the phone and said she would send an officer to our home. 

Literally 30 minutes later, the doorbell rang and before me stood an officer with a rifle in hand. It was a bit startling. The officer was a charmer. From the Caribbean, knew his wildlife, and we went to the backyard together. Unfortunately the fox was well enough to have sprung off the porch before we got there and we couldn't find him anywhere in the backyard. When I described the physical state of the fox, the officer said, that the fox was miserable and needs to be put out of its misery. We had a lovely interchange and he told me if I saw the fox again today, to call. That he would be right back to help me. Another kind samaritan. Once the officer left, I text messaged my neighbors to alert them of the fox and gave them animal control's number in case they needed it. 

Today was the day I went to the infusion center for my Prolia shot. I frankly did not know how it was going to go. The infusion center is a small space. So there was no where to hide in there. When I walked through the door, I was greeted by a friendly face. It was Laura, the person I had talked to and texted before my appointment. Laura turns out to be the nurse and couldn't have been nicer. I was surrounded by three other people getting infusions. Each one of them was sleeping, that is how relaxed they were. Laura and I had a delightful conversation, she was concerned that I had a good experience, made sure that I was only going to get charge $275, versus $1,500 in my doctor's office, and she even scheduled my follow up six month appointment. Literally this was a MUCH better experience than interfacing with the hateful nurse at my doctor's office. 

While getting my shot, Laura had me sit for 15 minutes. That was my only 15 minutes of peace for the entire day. In a way, that time was a God sent. Unfortunately the rest of my day was very stressful, bordering on upsetting. I am so stressed out that my migraine headaches are unrelenting. Though I am used to terrible head pain, my migraines now present with ear issues. It is the ear issues that make me very upset because I feel pressure and heaviness in my left ear. Any case, tonight I pulled out my rescue drug and lots of Advil, in hopes that this will help. 

Thursday, March 14, 2024

Thursday, March 14, 2024

Tonight's picture was taken in March of 2009. That day we took Mattie for a walk around the National Mall in Washington, DC. There is nothing like the Nation's capital during the spring season. Things were beginning to turn green and blossom. What I love about this photo was even in a wheelchair, Mattie still made a point to collect something (a stick) along our journey. 

Quote of the day: I believe all animals were created by God to help keep man alive. ~ Iwao Fujita

It was another red letter day here on the farm. My day began with my dad having a massive bowel movement in the shower (I wish this was it for today, but he went four different times!). No matter how many times I have told him not to do this, it doesn't compute. I even have a big bin in the shower where he can sit and go in an emergency. As I rather him go in a bin, rather than all over the shower. Mind you every morning before getting him into the shower I ask.... do you have to go to the bathroom. Forget it. Nothing works. Dementia is a cruel disease and some times I wonder who it is worse for..... the patient or the family member?

After a big clean up, I got him cleaned, dressed and downstairs for breakfast and then got him ready for his physical therapy session. Before his physical therapist came, I decided to call the VA Dept of Agriculture and Consumer Services. They regulate non-profits and our ability to legally fundraise. A non-profit has to submit an application yearly and I have been trying to find out where our application was in the process of review. I called last week and have been checking the website daily. 

Finally today, I hit the jackpot. A lovely man answered the phone and he took pity on me. He understood my desire to close the loop on this application and walked me through the yearly process, when to file again, and what I learned is once the agency receives the application and cashes our check, the non-profit is deemed in compliance with the agency's regulations. But his kindness did not end there. He literally asked me for the name of my non-profit, went through hundreds of applications that are on file and moved ours to the top of the list. Literally within thirty minutes, our application was approved and I received the certificate by email. 

I do not know what I have done to meet this regulatory angel, but I am deeply grateful. My world is in absolute turmoil now and I have become accustomed to doing things myself and protecting myself. But without this kind soul, the Foundation would still be caught up in the que of applications! Each day despite living in hell, I try to find one good thing. This man wasn't just my one good thing for the day, but for my week! 

Wednesday, March 13, 2024

Wednesday, March 13, 2024

Tonight's picture was taken in March of 2009. Mattie was home between hospital stays and as you can see our living room floor was a hub of activity. Mattie had trouble standing independently and couldn't walk after his surgeries. So we all spent a lot of time on the floor. Our living room was filled to capacity with different Lego structures. Truthfully our living room became a Lego city. I was fine with that, as long as Mattie was engaged and occupied. In front of Mattie was a box of antique train items. Before my graduate school mentor died, he gifted Mattie a lot of Lionel trains and train items. This was one of the boxes in question. I will never forget my mentor or his kindness to Mattie when he was born. 

Quote of the day: Dogs are miracles with paws. ~ Susan Ariel Rainbow Kennedy

"Two Furry Friends!"

Sunny loved car trips! He was all about the adventure. This was a photo taken in my mother-in-law's kitchen in Boston. We drove Sunny up with us and you can see what fascinated Sunny.... the great outdoors. He was glued to the door! What I think was adorable however, was how well Sunny got along with their cat, OC. OC ruled the house but somehow didn't mind Sunny and of course Sunny was used to living with Indie, so was very cat friendly. 

This morning I was stressed out. No matter how many times I remind my mom about the timing of our day, something just doesn't compute. We needed to leave the house by 9:45am in order for me to drop my dad off at his memory care center and then drive to the hospital for my mom's doctor appointment. Needless to say, I could see the 9:45am departure time wasn't going to work. My mom just can't get it together in the morning. So I literally got my dad out the door and then ran back home to herd my mom into the car. 

I drove to the hospital, which is about 40 minutes away. We were scheduled to meet a rheumatologist to discuss my mom's osteoporosis. When I got into the office, I was harried, because I had to find parking, had to get my mom into the office, and then despite filling out paper electronically, they had MORE for me to do. In any case, the doctor was nice, though talked a mile a minute. In any case, my mom is now scheduled to take Prolia just like me. Why her doctor in California did not start this sooner, is beyond me. But my mom's osteoporosis is significant, especially in her hips. The doctor wanted my mom to complete some blood work. I wasn't expecting this today. Which meant that we had to walk to the outpatient lab of the hospital to get the testing completed. The tech taking my mom's blood was fantastic and though my mom hates needles, made the process go very smoothly. 

What I find particularly interesting is how easy Medicare makes access to Prolia. A night and day difference from what I have to do to get this drug. In fact, I am going on Friday for the first time to an infusion center to get my Prolia shot. I was so sick of dealing with my doctor's office and the high cost of the drug (as they would only bill it as a pharmaceutical expense). I am told that the infusion center bills the drug as a medical expense and I will only pay $275, versus $1,500. We shall see. What I do know is I am not at all excited about going to an infusion center. I am sure there are all sorts of infusions going on there, but clearly one of which will be patients on chemotherapy. I have seen enough chemotherapy for a life time and truthfully I am in no state to take on more pain at the moment. 

Tuesday, March 12, 2024

Tuesday, March 12, 2024 -- Mattie died 754 weeks ago today. 

Tonight's picture was taken in March of 2009. That day we were invited to the launching of the Children's Art Gallery at the Hospital. We had worked on many pieces for this exhibit, including poems, a Lego structure of a hospital room, and collages. All were on display. After a little ceremony, we had a party and several of the volunteer musicians were on hand to entertain and work with the children. Do you see the fellow with the violin? That is Anthony. Not only did Anthony work with Mattie, he now works with my dad at his memory care center. Each month when Anthony visits the center, he purposefully goes over to my dad to remind him that he loved working with Mattie. A special person indeed! Mattie loved art and truly enjoyed the launching of the art gallery. Which is why whenever I visit the hospital, I always walk through this space!

Quote of the day: Dogs don’t rationalize. They don’t hold anything against a person. They don’t see the outside of a human but the inside of a human. ~ Cesar Millan

This is one of my favorite photos of Sunny. My good friend, MaryAnn, gave Sunny this lion toy! That day, we had a good time playing with several of his toys and the lion landed up on top of his head. Just precious! The best dog ever. 

This morning, I spent 90 minutes, yes 90 on the phone trying to connect with my dad's health benefit's center. My dad's former employer used to provide retirees with a Health Reimbursement Account. It was a very helpful thing to have as it helped pay off some of his monthly insurance premiums. In any case, in January when I called this benefit's center, they explained that the company would not be providing a HRA any longer to retirees because they were revamping benefits and trying to get retirees to sign up for a Medicare Advantage Plan. NO THANK YOU! If it sounds too good to be true, then it is. Mind you I wouldn't know that such a change was imminent if it wasn't for our friend, Phyllis, in Los Angeles, who gave me a head's up!

So I figured once my dad's current HRA ran out, that will be it. Then this week, we received a whole packet of brochures in the mail. One mentioned a HRA option! Naturally I was confused. Needless to say, I spent 90 minutes on the phone today trying to figure out whether the company changed its mind and is offering retirees a HRA! Truthfully I was passed from one person to another. I talked to a total of 7 different people. I also got on-line and did a chat with the benefit's center! Ironically the chat person gave me the most accurate information and the direct number for the HRA people! Finally after 90 minutes, I learned what I already knew in January. There is NO new HRA! Needless to say I gave it to them on the phone. Why send us information this week on a HRA if this brochure has old and outdated information? It was a waste of time, but I have now put that issue to bed. One issue down. 

After that phone call, I went outside for an hour to pick up large tree limbs that fell from wind storms we have been having. I contacted my neighbor's contractor this morning because the debris from the construction site was all over our front lawn. You name it.... Styrofoam containers, snack wrappers, paper plates, and dirty napkins, etc! Once I cleaned all that up, I wrote to the contractor. In our exchange I asked him whether I could dump several large tree limbs into his dumpster. He agreed and he did me a favor because you should have seen what I collected. It was a ridiculous and heavy amount. But I not only carried these limbs myself, I lifted them up over my head and into the dumpster. It did not end there, then I brought our large garbage bin to the backyard and collected more sticks and branches. Really this alone could be a full time job. 

Who was missing from the backyard trip? SUNNY! Sunny was my constant companion. Being outside doesn't seem to have the same meaning. But as I walk through our backyard, I remember that cute tan and white fellow walking, running, sniffing, and exploring his yard. He loved it and I loved that he was a part of my life. 

Monday, March 11, 2024

Monday, March 11, 2024

Tonight's picture was taken in March of 2009. That day we were going to get admitted to the hospital. While waiting for a room in the outpatient clinic, we had a lovely visit with flight attendants from United Airlines. They came to meet with the children and gave Mattie this adorable teddy bear, a card, and wings! Check out Mattie's beautiful smile! Visits like these were truly appreciated and I will never forget the many acts of kindness that surrounded us during Mattie's 14 month journey. 

Quote of the day: Every morning, I wake up and forget just for a second that it happened. But once my eyes open, it buries me like a landslide of sharp, sad rocks. Once my eyes open, I'm heavy, like there's too much gravity on my heart. ~ Sarah Ockler

Sunny and me at the DC Aquatic Gardens. This beautiful space is one of the best kept secrets in Washington, DC. I can't tell you how many times we visited this spot with Mattie and then with Sunny. Sunny absolutely loved listening to the frogs, checking out the bird life that hung about the ponds, and there were many wonderful places for Sunny to sniff and explore. A face I will never forget. 

I am lucky enough to have a tried and true person who comes to help me clean our house twice a month. Today was cleaning day, and in order to get my parents up and ready by 8:30am, I have to get up at 5:30am. When I tell you I was dragging all day, I am not kidding. In fact, the ear pressure from my migraine was better yesterday, but today, I have confronted many stressors, and sure enough my left ear is acting up again. We take for granted when our ears work perfectly. When they act up it truly changes how we move and are able to balance. 

The wonderful person who helps me clean, is someone who came into my life when Mattie was diagnosed with cancer. She was introduced to me by my neighbor in Washington, DC. Now 15 years later, we are still together. Today, while I was out, she happened to break something. When I got home, she apologized and felt terrible. I told her..... it's a thing! Not a person! Accidents happen and given that she and I are both dealing with great stressors in our lives, I told her we have bigger things to worry about.... THIS IS NOT one of them! 

I received a text message today from an acquaintance. Someone I have met in the last two years, but not someone who knows me very well. CLEARLY, because if she did, she would never have written what she wrote. She was explaining why it is important for me to get out of my house, meet people, and get on with my life. HONESTLY, if you want to pet me backward.... just be prescriptive with me. I don't deal with directives well, and I most definitely do not deal well with directives that involve my emotions, my feelings, and what is in my heart. I provided a kind response, but responses to me during times of stress and crisis, give me great insight into the person delivering the message. 

What I learned from Mattie's diagnosis and death is not everyone is able to sit with me in pain. Not everyone is cut out to absorb my emotions, hear my thoughts and concerns, and curb one's instinct to provide platitudes and pep talks. In fact, platitudes and pep talks send me right over the deep end, because what they do in negate how I am feeling, they negate the trauma I am facing, and what it tells me is that someone thinks what I am coping with has an easy solution. There are NO QUICK FIXES to some issues. I would love a problem that has a quick solution for once, but this is not the hand I was dealt. 

Sunday, March 10, 2024

Sunday, March 10, 2024

Tonight's picture was taken in March of 2009. Mattie was in the outpatient clinic working on creating a vase on the pottery wheel. This was Mattie's first experience working with clay. He loved it and I have many of his creations in my office. However, the piece he was working on in this photo was actually presented to me in its final form on Mother's day. He glazed the vase a beautiful red color and he and his art therapists put tissue paper roses in the vase. It is a priceless keepsake that I feature in our family room today. 

Quote of the day: We’re drawn to companion animals by their absolute innocence. These are beings who present themselves exactly as they truly are—no pretense, vanity, or self-consciousness. ~ Ken Dolan-Del Vecchio

Before my life was torn to pieces, I was working with a local artist at capturing the beauty of our home. The goal was to generate four landscape paintings for our large family room wall. In one of the paintings, we were going to feature Sunny. 

When the artist began this water color sketch, Sunny was still alive and I had no idea how my life was going to be ravaged apart. In a way this painting captures the innocence of my existence. The calm before the storm. 

In September of 2023, I reached out to the artist, and put the commissioned work on a permanent hold. The whole thing saddens me intensely. Now the photo of this beautiful creation embodies the incredible and heart breaking losses in my life. 

Though we lost an hour because of day light savings time, this hour felt like ten! I just couldn't get up. In the past I was never affected by the time changing, but now, all I can say is wow. I had my usual day of craziness, which of course included many runs to the bathroom with my dad. The beauty of my dad is his memory span is about 30 seconds long. So he could have an accident in the bathroom one minute, and the next minute he has NO RECOLLECTION! I mean NOTHING. In fact my dad hasn't only lost short term memory, he has very little long term memory as well. He can't recall where he used to live, doesn't remember his houses, and when I show him photos of where he used to work, he can't recall the place or buildings. It is truly a sad commentary, as he is a shell of his former self. If I just had my dad to manage that would be hard enough, but I also have my mom. She presents her own sets of challenges cognitively and emotionally. So together, I wonder how I truly make it through each day. Of course caregiving is only part of the hurt I am experiencing. I think by far the worst thing about all of this is I am doing it alone. 

I love when people tell me that God gives us only as much as we can handle. WRONG! Or better yet, that God gives us these things because he knows we can manage them. Also WRONG. These are platitudes of grand proportion. I certainly do not understand God's plan in my life, but what I do know is I have had my share of pain, and one nightmare after the other. 

The highlight of my day today was my cousin left me a voice mail. I of course was managing my dad in the bathroom, but the message was so thoughtful, meaningful, and sensitive that I have kept it to listen to on down days. My cousin has selflessly provided care to many loved ones in her life. In fact, she has devoted her life to helping others. It takes a very strong, courageous, compassionate, and amazing woman to do this because with each caregiving role a piece of your body, mind, and spirit are worn away. Which is why, when my cousin reaches out to me and tells me I am special and there is only one Vicki, I listen! I listen because she knows what I am facing each day and the heartache I am living with. Yet no matter how I am feeling.... exhausted, depleted, depressed, and hopeless, I muster the energy to carry on because my parents need me.