Saturday, February 24, 2024

Saturday, February 24, 2024

Tonight's picture was taken in February of 2009. Mattie was admitted to the hospital that day! How do I know? I know because Mattie was wearing real clothes. He only did this when he wasn't in the hospital. When in the hospital, he lived in pajamas, day and night. As you can see Mattie was in the child life playroom and wasn't a happy camper. While juggling Mattie and how he felt, a former student of mine came to visit. In fact, throughout Mattie's 14 month battle, we had many visitors. Our community wanted us to know that they stood behind us. Frankly when a child has cancer, you feel powerless, so I understood that these visits were outward expressions of love. I could rationalize this, whereas Mattie couldn't! As Mattie's treatment progressed along, his need for isolation magnified. Mattie at that point in time disliked anyone and anything that took my attention away from him. I truly felt like I was constantly juggling so many balls in the air back then, but ultimately my number one priority was to support and protect Mattie. It is hard to believe that both Mattie and Pam (my former student) are now both gone from this earth.

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

Look at that face! Doesn't it say it all!!??? This is Sunny telling me.... I really want to go out, but do I need to wear this silly rain coat?? How I miss that beautiful face and spirit!

Tonight's quote practically leaped off the page at me today. I relate to its sentiments completely! When my eyes open in the morning, I feel like I am hit by a wall of bricks.... "a landslide of sharp, sad rocks." I just can't believe what is happening to my life. My mind and heart can't understand it and I can't tell you the strength it takes to get out of bed, get myself together, and muster to the occasion to care of both of my parents. What I would prefer to do is remain in bed or better yet not wake up at all. I am tired of living with pain, multiple traumas, and grief. 

My dad went to bed last night with a fever, a cough, and was very congested. I put on their vaporizer with Vicks and gave him Tylenol. However, I had the where with all to cancel his physical therapy appointment scheduled for today. After I got up, did my usual chores, got my dad showered, dressed, he ate his breakfast and then went to his recliner, I hopped into the car to pick up a supply of COVID tests. My dad gets tested on a regular basis at his memory care center, but before I contacted his doctor today regarding his symptoms, I wanted a negative COVID test in hand. I administered the test and indeed my dad got a negative result. 

When I alerted my dad's doctors to his symptoms, the doctor encouraged me to take my dad to urgent care for a flu swab. Apparently the flu is running rampant in Virginia. Lovely! So this afternoon, after my dad rested, I got them both in the car and we went for our urgent care appointment. Fortunately I was smart enough to make an appointment and to do all the paperwork from home. 

So my dad got swabbed a second time today, and thankfully he doesn't have the flu either. Clearly just a bad head cold. I have him on Tylenol and got a nasal spray recommended by his doctor called Astepro (an antihistamine spray without steroids).  

I wish I could say that my migraine has disappeared. Unfortunately it is very present and tonight I truly thought a knife was going through my eye. It is that painful. But I try to put this pain somewhere, in order to be able to work and function. I am not sure how I found the strength to start revamping Mattie Miracle's Walk website, but I did take that on and I am happy to report it is coming along. The one positive for this Saturday!

Friday, February 23, 2024

Friday, February 23, 2024

Tonight's picture was taken in February of 2008. Only five months before Mattie was diagnosed with cancer. That weekend, we took Mattie to Roosevelt Island. Which was practically a weekend tradition, regardless of the weather. I tried to save some bread throughout the week, so that Mattie could feed the ducks. He loved watching them and truly was my nature lover.

Quote of the day: Nobody can fully understand the meaning of love unless he’s owned a dog. A dog can show you more honest affection with a flick of his tail than a man can gather through a lifetime of handshakes. ~ Gene Hill

This was Sunny and Indie together on our bed when we lived in the city. We rescued Indie on the July 4th weekend of 2016. Which is why I named her Indie, for Independence day. For several months, Indie had our undivided attention and loved it! Then in September of 2016, we rescued Sunny and he came on the scene! Sunny and Indie got along from day one. Though Indie learned to take a back seat to Sunny and his needs! In those early years, Sunny could easily run up steps and jump up onto our bed. In fact, he was better than an alarm clock, as each morning, he would jump up and start panting for attention! I will never forget the bond between our two fur babies or time we shared together in the city. 

This morning after my usual routine, I drove my dad to his memory care center. I then came home and jumped onto a conference call with a researcher based in Texas. She is a nurse by training, who worked for many years administering chemotherapy to adult patients. We talked about the burnout rates among nurses and how she left bedside care and went back to school for her doctorate. Her research work fascinates me because she helps bereaved parents of children with cancer vocalize their grief and then they work together to create a legacy piece of music. So in essence telling a story of a child's life through a newly created song. I got the opportunity today to hear about her 5 week long research grief group, how this study is being received by parents, and some initial study results. 

But here's the interesting part about all of this..... though I maybe 15 years into my grief journey, I could easily jump back in time to recall that initial first year after Mattie died. What this tells me is that some things are so poignant, so life altering, that they are vividly recorded in my brain. What intrigued me about this researcher's group experience is that it is well moderated and that the participants truly get a lot out of connecting and learning from one another. This is a night and day experience from our own bereavement group experience. 

We joined a grief group about three months after Mattie died. I can still remember what the room looked like, how we were sitting, and who was moderating. The group was an utter disaster. So bad that after the first session, we never went back, and in fact the rest of the group members also declined to continue the process. I admit, talking about issues in front of a group is NOT my natural inclination. I did not even like this modality when I was training in graduate school. I was in my 20s then and less encumbered with the burdens of life. Nonetheless, even then I had trouble being a group participant. I wanted to help the other participants around me, rather than work with them on an equal playing field. I wasn't consciously doing this, but it was the end result. When I get in a group setting, I am more likely to want to listen and help others, than seek the help for myself. 

Therefore in 2009, joining a grief group, must have meant that I felt absolutely lost and was hoping the camaraderie of others walking this horrible journey would be of help. Needless to say it wasn't and not only wasn't it helpful, I would go as far as to say it was detrimental. It made me angry, it further made me feel isolated, and lost. I would have loved to work with the researcher I chatted with today, I have a feeling my group experience would have gone differently. 

We talked about phase two of her study and I was able to share my insights on the direction of this process. After our engaging hour long conversation, she ended the call by saying how impressed she is with Mattie Miracle. Particularly how we have changed the thinking regarding childhood cancer care. I found that very meaningful because as I told her the Psychosocial Standards of Care are Mattie's legacy. They were built on his harrowing cancer journey and the lessons we learned from his care. No amount of time could possibly go by that would ever block out or erase our experiences, the crises that we managed each day, our forever long grief journey, or the love we share with each other. These feelings live within my heart and nothing can touch or ever destroy them. 

Thursday, February 22, 2024

Thursday, February 22, 2024

Tonight's picture was taken in February of 2008. It is hard to believe this photo was taken five months before Mattie was diagnosed with cancer. Honestly at that point in time I did not even have an inkling that something was wrong. Childhood cancer wasn't on my radar scope, and when I look at these pre-cancer photos, internally I always say to myself that I was living in Disneyworld! I unfortunately can no longer say this as childhood cancer has touched and ravaged my family.   

Quote of the day: I heard somebody define heaven once as a place where, when you get there, all the dogs you ever loved run to greet you. ~ Robert B. Parker

This was one of my favorite Sunny poses! His downward dog!!! When Sunny did this big stretch that meant.... get up, it is time to go for a walk! Any one who thinks that dogs do not have their own temperaments and personalities, would be sorely mistaken. When we first adopted Sunny, I would say he was cautious and more timid. Most likely because we were new to him and he really did not know how his new home would work out. However, over time, as Sunny gained comfort and learned we were committed to him forever, his true personality came out. Sunny was loving, loyal, but also strong willed, needed a lot of attention, my constant focus, and wanted movement and to interact with nature and the world. As a by-product, Sunny's desire to explore, walk, and get outside became part of my world. I miss my buddy, my constant companion, and my inspiration to get back out into the world again after Mattie died. With Sunny's death and my current existence, I have once again retreated inward. I am now a shell of my former self. The body is the same (well try twenty pounds lighter), but my mind and spirit have been mortally wounded. 

Every morning, while getting myself together, I bring a cup of hot tea upstairs with me. This is of course after feeding Indie, getting the paper from the driveway, and doing some basic chores. I started bringing tea upstairs because it is my one perk that I do for myself each day. When I lived in the city, I never needed to bring tea upstairs. But as a full time caregiver of two, you learn that you take what ever moments you can get, in whatever way they look. 

I use the same big tea cup every morning. We bought this cup during one of our trips to Curacao. Inside the cup is the Papiamento word, DUSHI. Which translates into a term of endearment... meaning sweetheart or beautiful. This cup is symbolic of happier times and of true love. 

It was another busy day on the farm. After I got my dad washed, dressed, downstairs for breakfast, completed his 15 minute walk and got him into his recliner, I hopped onto a call with Children's Hospital at Sinai. We fund a child life program there and I got to meet the entire team today on an hour long call. If I couldn't go to Baltimore, Baltimore came to me. It was an important call and necessary, because sometimes email just doesn't cut it. 

After that, I ran out to go grocery shopping. Came home, put groceries away, folded the laundry, put it away and then got my parents mobilized to go out. If I don't plan things for them, they would remain sedentary, which wouldn't serve any of us well. Though I try to eat out only once a week, today, we went to the Cheesecake Factory. My good friend gave me a gift card to this restaurant and taking a break from cleaning and cooking were appreciated. 

While at the restaurant, music was playing. It was songs that I used to hear when I was in college. It was a very nostalgic dining experience and unfortunately made me very upset and depressed. I also was surrounded by happy couples. People talking, holding hands, and connecting. Between grocery shopping and dining out today, I felt crushed. Somehow these activities heightened how alone I feel. How directionless, and how once again life is spinning totally out of my control. 

Yesterday I received a beautiful gift of loose tea and a tea lover cup from our cousin. Today, I received a photo of this painting by my friend, Ilona. It is 'Sunshine in a Cup.' It ties into yesterday's gift in which tea symbolizes A HUG IN A CUP. 

Meanwhile check this out! Indie has taken to Sunny's bed! You have to love her. Since Sunny died, Indie's personality has exploded. She follows me around, has become very demanding, requires a lot of petting, and when we watch TV at night, she is right by my side. She is channeling her inner Sunny. 

Wednesday, February 21, 2024

Wednesday, February 21, 2024

Tonight's picture was taken in March of 2007. Mattie was almost five years old. Though it was practically spring, we got snow that day! Of course that inspired Mattie. So we bundled up and went outside on our deck and commons area to play. I can't tell you how much we accomplished in this small space. Which is a reminder to me that it isn't the size of the space that is important, but instead what you do with the space you have! With Mattie's creativity, the sky was always the limit. 

Quote of the day: Your pets can feel your grief after they pass away but it will not harm them or keep them from continuing on their journey in the afterlife. ~ Karen A. Anderson

I absolutely love this! When we lived in the city, Sunny and I walked around Washington Harbor daily! I loved seeing the Potomac River throughout the year, as it changed with the seasons. Sunny loved being by the water too! He however was fascinated by the ducks and geese that hung out in the water!

Tonight's quote just resonated with me. There are many others quotes that say the exact opposite. Meaning some quotes espouse that dogs can't go to heaven when their owner on earth is grieving and pining for them. Karen's quote fits my belief system because I do not believe God would punish a dog or pet by keeping them in limbo (purgatory), until their owner let's their spirit go. I know without a doubt that Sunny has crossed the Rainbow Bridge! I am confident in this because Sunny's life brought joy, happiness, loyalty, and love to those who knew him. He really was a heavenly dog right here on earth. 

It was another ridiculous day on the farm. My morning started with my dad pooping all over the shower. I am not sure what is worse the sheer notion of this or the fact that he then sprays it around the shower making it a total mess for me to clean up. I literally took my eyes off of him for five seconds. That's all it took for him to get into trouble. Mind you once I got him out of the shower, was cleaning up the mess and cloroxing the tiles, he had NO memory of what just happened. NONE! Not a fan of dementia or irritable bowel syndrome!

Once I got my dad to his memory care center, I did some chores, and then came home to more phone calls. I called my dad's health insurer again today! Their billing is hysterical. I paid his premium for December and January! Now they are telling me that I did not but instead paid it for February and March! Really that is ridiculous! While on the phone with them, I pulled up our credit card history and gave them exact dates. I am telling you, each day it is like falling into quick sand. After dealing with my dad's insurer, I then dealt with my own. Our premium is due at the end of the month. When I went onto the system, they said NO payment was due at this time! WRONG! So I had to get on the phone with them and find out what on earth was happening! You are going to love this! Because it is a leap year, this screwed up the system and this impacted the billing for the month. All I know is I got it corrected and paid the premium. Truthfully all of this could be funny if it wasn't so pathetic. 

Soon as that was done, my mom's physical therapist arrived. While she was in her session, I tried to do more Foundation work, but around here it is easy to get derailed, especially since my mom's session is only thirty minutes long. Hard to get anything done in that time. Of course once the session was over, my mom wanted to go out. 

This composition came into my inbox today! A memory from years ago. This was a view from our town house in the city. We used to feed the birds and I felt certain some of these sparrows came back to us year after year. Mattie used to love seeing the birds, which was when we started this bird feeding activity. Needless to say, I look at these photos, and I long for how my life used to be. 

I received the gift of special tea today from our cousin. I just love the story that came with the gift. In case you can't read it, it says...

There are few hours in life more agreeable than the hour dedicated to the ceremony known as afternoon tea. If you are cold, tea will warm you; if you are too heated, it will cool you; if you are depressed, it will cheer you; if you are excited, it will calm you. There's always time for a cup of tea. Do not accept badly made cups of tea - do not surround yourself with people what make them - they don't care about you. Tea - a hug in a cup. A simple cup of tea is far from a simple matter. 

I relate to this story about tea on every level! For years now, I have always made myself a cup of tea around 3pm. It is like my moment (though brief) in which I regroup and take a minute to pause. The English got this so right! Tea and chocolate are medicinal to me.  

I absolutely love the description of tea being a HUG IN A CUP! I couldn't have said it better. Each afternoon, as I have this tea in my new tea lover cup, I will be thinking of our cousin. 

Tuesday, February 20, 2024

Tuesday, February 20, 2024 -- Mattie died 751 weeks ago today.

Tonight's picture was taken in February of 2003. I absolutely LOVE this photo! It captured Mattie's curiosity and ingenuity! As he managed to open the refrigerator door on his own and then decided to examine what was inside. I would describe Mattie as a busy little fellow and one thing I know.... he kept me on my toes at all times. 

Quote of the day: They say time heals all wounds, but that presumes the source of the grief is finite. ~ Cassandra Clare

This photo popped up in my Facebook feed today. Typically I am not on social media, but I was posting something about the Foundation today. Literally this photo jumped out at me, as Facebook told me it was taken on February 20th, five years old. How different life can look in five years. This moment of time, my life was far happier. 

As you can see, with Sunny, we went out walking regardless of the weather. How I miss this boy! I saw a woman walking a black and white Australian Shepherd today in our neighborhood, and naturally my mind drifted to the Sunman. Literally while I was driving I said.... there will only ever be one Sunman and I am so glad you were in my life. 

This morning, after my usual routine of dropping my dad off at his memory care center, I came home and had several phone calls to make. One was to a government office in Richmond, as Mattie Miracle has to file an application to renew our sales and tax certificate. But in trying to renew, I got locked out of the application system, so I needed technical help. I wasn't sure how that was going to go, but I got connected to a lovely and helpful individual who assisted me within minutes. Why can't more people be like this woman? She was helpful, listened, and was patient on the phone as she walked me through the process on-line. All I can say is after interfacing with such a kind person, I found it energizing and made me feel better about the world. 

After that, I then called my dad's health insurer. They drive me absolutely crazy, as I have been complaining to them since December regarding his premium payments. Though the woman on the phone was nice today, I did not want to follow her instructions. Which would entail her sending a message to the billing dept, and then they would get back to me. I assure you, they won't! I learned that lesson the hard way. So literally I told her NO! I want to be connected to a manager or supervisor, because this issues hasn't been resolved in three months. I await a call tomorrow. Needless to say, I am not holding my breath! 

Later today, I took my mom out for tea. Our local Starbuck's is my Cheers. I have gotten to know each of the baristas, I know aspects of their lives, and they are extremely kind to me and my mom. At this stage in my life, I need loving and kind. 

When I got home, I found a box near my door. I wasn't expecting anything! But look at what was inside of the box.... handmade placemats and napkins. With a butterfly theme! Such a thoughtful, kind, and loving gift. This was given to me by someone I have only met one or two times, yet she wanted me to know that I am loved and my life matters. 

Monday, February 19, 2024

Monday, February 19, 2024

Tonight's picture was taken in February of 2006. Mattie was almost four years old. This was a typical sighting in our living room. Mattie loved building and creating and he especially loved these colorful tinker toys. I don't know if you can see the little doll house on our coffee table, but this belonged to Mattie. We were in Target one day and he saw this on the shelf and requested it. It was pink and purple and though some may have deemed it a "girl toy," I figured Mattie could learn and develop from this form of creativity. He loved it!  

Quote of the day: I guess you don’t really own a dog, you rent them, and you have to be thankful that you had a long lease. ~ Joe Garagiola

When we lived in the city, I always celebrated Sunny's birthday! He got a party hat and a special doggy bakery cookie. Sunny LOVED his treats and I LOVED spoiling him. Sunny just loved us, he loved his home, and he was grateful to be rescued. He will never be forgotten. Today while I was outside picking up fallen branches, I couldn't help but wonder.... where is my buddy? I miss him by my side and his loving personality. 

At 7am, I looked outside my door, and found these three bags were left by the garage. Yes I ordered them, but I wasn't excited about lifting three 44lb bags of salt into the house and lugging them to the basement. These salt pellets are needed for our water filtration/softening system. I assure you 44 pounds of salt seems to weigh a ton. Given the many falls I have had lately, I knew I had to be careful taking on the weight of these bags. I did it slowly and smartly. I wish I could say that was the end of lifting today. But more boxes came in the evening.

I am very grateful that two of my friends read last night's blog posting and then wrote to me today. Basically they gave me a reality check that I have nothing to feel guilty about regarding my parents and my mom's comment about her lack of happiness. My friends helped me to see that the care I provide my parents daily for over two years, is extraordinary and in their words most adult children would have institutionalized parents with such great needs. I am working hard to prevent that from happening, but I can attest to the fact that this isn't easy and it is a sacrifice. But a sacrifice I would hope that my Mattie would have made for me too. 

Since today was a holiday, both of my parents had physical therapy at home. My dad had his hour long session at 11am, and my mom had her session at 12:15pm. So it felt like a busy morning of juggling appointments, but while my parents were in their sessions, I was able to do some Foundation work. 

I then took them out for frozen yogurt later in the afternoon and then came home to deal with laundry and cooked, served, and cleaned up dinner. My goal is to help my dad regain weight. He has lost 11 pounds in three months and his appetite is waning. Which is why I have now integrated bread and jam in his nightly dinner. He loves bread and he never turns it down. 

Just when I think I can sit down and get some work done, four or five other issues pop up that derail me (all around my parents' health insurance). In the beginning, when my parents moved in, these types of fire drills were innerving. Now I just expect them to happen, as with their dementia, everything is a catastrophe. I am sure this is because their memory is fleeting, if things aren't addressed right then and there, they won't remember them. Truthfully watching and observing my parents makes me nervous. Nervous for my own future, as now I face it alone. 

Some days I can take what I am dealing with and try to absorb it, other days, I am just too overwhelmed and push away the reality, in order to get through a very long day. All I know is it takes a great deal of patience, strength, stamina, and the ability to think beyond one's self to care for a loved one with physical and cognitive impairments day in and day out. 

Sunday, February 18, 2024

Sunday, February 18, 2024

Tonight's picture was taken in February of 2006. This was typical Mattie! He absolutely LOVED clay and smooshing into every crevice of his cars, trucks, and trains. Though this was a royal mess, if this was something that was safe, kept Mattie focused, interested, and creating.... then I supported it fully! Look at that great smile!

Quote of the day: The misery of keeping a dog is his dying so soon. But, to be sure, if he lived for fifty years and then died, what would become of me? ~ Sir Walter Scott

Can you see why I fell in love with this face!? I adopted Sunny without ever meeting him in person. I saw his photo of Facebook, and it was love at first sight. I am so glad that I moved outside my comfort zone in 2016, and made this adoption happen. Sunny brought so much to my life and life without him is still painful. If you know anything about me, then you know I get attached to things and people and love them deeply. 

For the past several days, I have had a horrible migraine. In fact, I think it is the start of a cluster headache. I don't get them often, but when I do, they can last for months. They affect my ears (with fluttering sounds), one of my eyes feels like a knife is stabbing it, my face is sensitive to the touch, and my head is pounding. Of course whether I am debilitated or not, the show much go on in my house. Frankly I am not sure how I make it through each day, which is just another repeat of the day before!

Each Sunday, I take my parents out to brunch. I snapped this photo because I want you to see what I see across from me each day. It is a very depressing sight day in and day out. Dementia is another horrible disease and though the shell of my dad is moving around, the personality and cognitive ability of the man I once knew are GONE! Completely gone. My dad eats super fast, doesn't talk, isn't registering conversation, and when he isn't eating or sleeping, he is jumping up to the bathroom. Today, I visited the bathroom twice with him in less than two hours at the restaurant.

Meanwhile, while dining my mom commented about the people all around us. They seemed happy, they were conversing, there were couples, families, and small children. True I don't know what is going on in the lives of these diners, but what I do know is my journey is not and has not been easy. I, of course, couldn't help but feel badly and guilty. Guilty because at the end of my parents' lives, they are facing more tragedy with me. More upset, and I can't provide them with the  happiness that most adult children can provide their aging parents.