Saturday, August 27, 2022

Saturday, August 27, 2022

Tonight's picture was taken in August of 2009. Mattie was surrounded by his three main psychosocial providers.... Linda (child life specialist), Jenny (art therapist) and Jessie (art therapist). By this point we knew Mattie's cancer was terminal, but his team gave it their all until the very end. As you can see, Mattie did not want his photo taken therefore he put his leg up to block his face. 

Quote of the day: The best and most beautiful things in this world cannot be seen or even heard, but must be felt with the heart. ~  Helen Keller

Peter sent me this photo memory. It captures memories from ten years ago on our European cruise. There is a night and day difference in my parents between then and now.

This is my view this afternoon. Both are out cold!

It is hard to believe that about a year ago we moved into our house. On August 25, 2021, we left our townhouse in Washington, DC. We had lived there 27 years! There are a host of memories made in this space. I can still remember our first night there, as we drove from Boston to Washington, and slept on the floor until our furniture and things arrived days later. We fit so much into this open space and when I saw it empty last year, it felt like I was hit by a tidal wave. I still don't like thinking about people living in our space. My joke with Peter was that Mattie vomited (as a baby) on practically every piece of wood in the townhouse. Our married life started here, Peter graduated from business school, I got my doctorate, we had Mattie, and we had our seven years with him. So many memories tied to 1,600 square feet. 

This was Mattie's bedroom. Which later became my office. 

Our bedroom. At this window, Mattie loved to watch cars, buses, trucks, and airplanes as a baby and toddler. Perhaps it cultivated his love of locomotion!

The day we moved, we packed up things we valued. The Italian music box is the home of Mattie's ashes. 

Our first night, we slept in the family room. I literally slept on Sunny's dog bed. We slept downstairs because the second floor had NO air conditioning. Another gift from the previous owners, as that was something we had to fix ASAP. It has been a very bumpy transition for us, as moving was tough, then we had extensive house renovations, followed by me packing up my parents and moving them in. I am still looking for my break?

Friday, August 26, 2022

Friday, August 26, 2022

Tonight's picture was taken in August of 2009. Mattie was struggling and despite his terminal status, the hospital had him working on breathing exercises. That of course did not interest him until Peter turned it into a game. Peter had one machine and Mattie had his flutter valve. The dueling Browns!

Quote of the day: We are shaped and fashioned by what we love. ~ Johann Wolfgang von Goethe

Throughout our entire marriage, Peter has always been the morning person! I am NOT a morning person, but given my situation, I am forced to get up early. Which I truly believes contributes to my migraines. 

When I woke up this morning, I saw these photos! Peter sent me them to me by text message. I call this ANGELIC SUNNY!

Sunny loves his front yard time off leash in the morning. I think he looks so regal! The way Peter captured the sun's rays on Sunny is priceless to me. 

This morning after getting my dad up and out the door, I drove my mom to physical therapy. Her therapist is lovely. Each time, Jenny asks my mom.... what did you do this week or what are you doing this weekend? 

Unfortunately our life is not very diverse or stimulating. This shows up in our answers. It is very hard describing our life to others, particularly those who don't live with a home bound person. 

In any case, my mom told Jenny that she can't do anything she likes to do here. That led to the conversation.... what do you like to do? I know exactly what my mom likes to do (or DID do)! It was walking, traveling, and dancing class. The problem of course is my mom doesn't have the insight to know that she physically can't do these activities anymore independently. This is a hard reality that I feel I walk each day, as I want her to be safe, yet I try NOT to squelch her hope. But I have to be the parent on duty here and I think the therapist could see the struggles I face, as she made suggestions to me mom, like joining a senior center and participating in activities, and all of them were met with a big NO! I know this NO all too well, as I have been dealing with it for nine months, and I have yet to figure out what my mom wants to do. 

I realize it is her disease and over time, I have backed off, because she no longer can do the things she once was able to. I know this reality and slowly she is facing this. Needless to say this is a very depressing reality each day. After therapy, I took her out for a tea latte and a trip to the Hallmark store. That improved both of our moods! I am a big Hallmark fan, store and channel. To me when I step into Hallmark, I don't have to face reality, but instead can see pretty and happy things, which is very needed on a weekly basis. 

Thursday, August 25, 2022

Thursday, August 25, 2022

Tonight's picture was taken in August of 2009. Mattie was riding around on Speedy Red in our commons area. As you can see JJ, our resident Jack Russell Terrier, was checking out the process. Mattie and JJ were good buddies. When I look back at this commons space, I just don't see concrete. I see a space where Mattie learned to walk, ride his bike, fly a kite, and drive Speedy Red. It was also a space I walked constantly with Mattie when he was a baby and I was trying to get him to fall asleep in his stroller. 

Quote of the day: Dogs are not our whole life, but they make our lives whole. ~ Roger A. Caras

In 2016, we adopted Sunny. This was one of the photos I saw on Facebook of Sunny. He was rescued from South Carolina by an organization called City Dogs in Washington, DC. It is hard to believe that Sunny was abandoned on a highway and when he was found, he actually had tags on him. When his former owners were contacted, they said they did not want Sunny back. 

This is truly hard for me to grasp, because Sunny is the best dog. Loving, loyal, obedient, and well behaved. Prior to seeing Sunny's photo on Facebook, I had contacted several different rescue groups and applied to be a pet parent. I was turned down by all of them because at the time we lived in the city. Shocking as this may sound! One would think that a rescue organization would be more interested in finding a loving home and pet parents, rather than summarily deny an application because of where the applicant lived. 

I was about to give up on adopting a dog, when a friend (who also died of cancer) posted this photo of Sunny on my Facebook page. As soon as I saw the photo, I fell in love with Sunny's face. I immediately contacted City Dogs and they took me seriously. I completed an application, an interview and even had a home inspection. I grew up with a dog, as did Peter. But we never raised one as adults. This was an exciting and scary notion at the same time. But I felt we needed the life, energy, and love that only a dog can provide. Thankfully I followed my gut instinct. 

I will never forget meeting Sunny for the first time. Keep in mind that I adopted him without ever meeting him in person. Sunny was transported from South Carolina to Washington, DC. But I was in California visiting my parents and wasn't able to pick him up. So instead, Sunny was fostered by a woman in Washington, DC until I got back. When we went to Leah's house to pick up Sunny, Peter and I both walked into her home, and Sunny immediately came over to me wagging his tail. He loved us immediately and even sat in Peter's lap! This photo was of Sunny meeting Indie for the first time (we adopted Indie two months prior to Sunny). 

This photo was taken in 2017, when Sunny and I completed training and Sunny passed the Good Citizenship test. It was a happy day for both of us. My hope was to continue with training and to do pet therapy with Sunny. But unfortunately life got in the way. 

The one issue I have with non-stop caregiving is that it sucks up every hour and any amount of energy I have. In all reality these are my productive years, where I should be accomplishing more, and yet I can't. This is deeply frustrating for me and I can only hope that later in life I don't regret the things I could have perhaps done but didn't. All I know is there is only one of me and I am being pulled in multiple directions. 

Today we learned that Sunny's cancer is growing (in adrenals, bladder, and spleen). Sunny has been off of chemotherapy for two months. We stopped to give Sunny a break, because he couldn't hold down food, had bouts of diarrhea and also needed antibiotics for a urinary tract infection. So far we have treated one infection after the other and we can't seem to eliminate Sunny's infections. I say infections because each urine culture reveals yet another type of bacteria infection. Therefore Sunny has been on antibiotics for months. The vet was hoping we could solve the infections before continuing with chemotherapy. Now we all realize this isn't possible. 

So tonight we administered a new oral chemo med, Chlorambucil, to Sunny. It is my hope that he tolerates it, as he did not do well on Palladia. Sunny is now 60 pounds. Since his diagnosis he has lost 10 pounds. Every vet would tell me when Sunny was well that he was overweight. All I can say is thankfully he had some weight on him, otherwise he would look emaciated. 

Sunny is loved and I miss my one on one time with him, which I used to have. Now I am juggling so many needs, I can't focus on Sunny effectively. Which of course makes me sad. But in my perspective Sunny is happy and has a lot of life still in him, so I am going with that and following his lead. 

Wednesday, August 24, 2022

Wednesday, August 24, 2022

Tonight's picture was taken in August of 2009. Peter snapped this photo while Mattie and I were resting. Mattie requested to sleep inside Peter's tent. So Peter got this big thing up and standing between our dining and living rooms. We put in aero mattress for each of us and a couple of Mattie's battery powered lanterns. Keep in mind that the IV pole and pain pump were also in the tent with us. There was so little we could do for Mattie at that point, so whatever he asked for that was doable, we did!

Quote of the day: Once the realization is accepted that even between the closest human beings infinite distances continue, a wonderful living side by side can grow, if they succeed in loving the distance between them which makes it possible for each to see the other whole against the sky. ~ Rainer Maria Rilke

Yesterday I managed through the day with a migraine. I went to bed, but by 2am, my head was pounding and it woke me up out of a deep sleep. I must have been up for an hour or two and then went back to bed. When my 6:30am alarm went off today, I didn't know what hit me. But I got up because if I don't, everything around me would come to a standstill. 

Since my parents moved in, Peter brings me up a cup of tea every morning while I get myself showered and dressed. That may seem like a small gesture, but it makes a big difference to me. Otherwise, I am not sure when I would drink anything in the morning. As tonight's quote points out, Peter and I have perfected the art of living side by side, and seeing and appreciating the other for who we are. Not every husband could handle our living conditions. But Peter has always understood my full on caregiving style and has never questioned it or asked me to change. I may not mention Peter much in my postings, but all things are possible here because I have an understanding spouse. 

This morning after I got my dad washed, dressed, had breakfast and out the door to his memory care center, I hopped on a conference call. Another non-profit from Arizona heard about Mattie Miracle and our psychosocial work and wanted to learn more. This non-profit is working on designing play spaces for children with life threatening illnesses. This concept falls nicely within our Psychosocial Standards of Care. So I highlighted the Standards by phone and shared our social interaction chapter with her, so she could see that the research literature truly illustrates the importance of social interaction for children with cancer. As these interactions increase knowledge (as children learn from play), decrease social isolation, and increase adjustment. 

Later in the day, I took my mom out to lunch. After lunch, we walked the mall. My mom's walking is labored at best, or I should say it looks painful, but fortunately she doesn't feel or see the issues in herself. While shopping in one store, the store representative came up to us and he literally said.... "are you two sisters?" I am sure he was trying to be cute or friendly! But I wasn't in the friendly sort of mood, nor do I feel good about myself. As I have lost my walking and exercise routine. In any case, I literally snapped at him. I said, "are you insulting me because I look much older than I am, or you think my mom looks my age? Either way, I come out looking pretty bad in this equation." He literally had NO response for me. I have heard people make just small talk like this, and typically I don't mind it. But his comment sounded like he was sharing a FACT and I just did not care for it one bit. 

Tuesday, August 23, 2022

Tuesday, August 23, 2022 -- Mattie died 673 weeks ago today. 

Tonight's picture was taken in August of 2009. If you look closely you will see that Mattie was attached to several things.... oxygen and a pain pump. It was truly a horrific time in our lives, as we just found out Mattie's cancer spread throughout his body. That day, our friend Junko and her family dropped off this incredible Lego set. This beautiful kit took Peter and Mattie a few days to build. Legos were our therapy, as they enabled us to concentrate on something other than cancer, to chat together, and to unite around a common project. This Lego kit brought Mattie a great deal of fun and joy. 

Quote of the day: What we have once enjoyed we can never lose. All that we love deeply becomes a part of us. ~ Helen Keller

When I woke up this morning, I felt nauseous and had a violent headache. I knew a migraine was fast approaching. Despite how I felt I had to push through it, get myself showered, dressed, breakfast made, and my dad up, showered, and dressed. My dad had back to back therapy, both physical and occupational therapy at the hospital. I always leave an hour to commute by car to get to these appointments as I never know the traffic I will encounter. But then I have to factor in parking and getting my parents up to the lobby. Once in the lobby, I get my mom settled and with hot tea, while I take my dad to the outpatient clinic. Needless to say, I felt a great deal of pressure this morning to get out the door on time. As I literally have to herd my parents to make any time deadline. 

This week my dad will be discharged from occupational therapy. I think they feel he has plateaued and that we can maintain the therapy at home. So that means we are now done with speech and occupational therapy, but physical therapy will continue in October. I think all of my dad's therapists are lovely, but I do think being in one's late twenties provides a MUCH DIFFERENT perspective than let's say someone my age and with my experiences. 

The occupational therapist today asked my dad what kinds of activities he likes to do. She was asking, because she is looking for ways to keep him physically active. His response was "I like relaxing." Any case, I told her that my dad is motivated by food. So she asked him what his favorite food was? He answered, "fish," of all things. I then told her that my dad loves cookies. Her idea is if he wants cookies, he has to go into the grocery store and buy them, otherwise no cookies. This is where the insights of maturity and being a full-time caregiver comes in! There is NO POSSIBLE way that my dad can do anything independently. So to give him this assignment is literally giving me ONE MORE THING TO DO! Not only that, I grocery shop with my dad if he showed even 1/100th of interest. But he has NO interest or desire to do anything. 

When I got home today, I found these lovely cards on my desk. Peter got them for me. That may not seem like a big deal, but to me it is. It is our common symbol for Mattie and with all that we have going on, Peter always thinks about me. 

Later today, Peter and I went back down to the basement. Peter has been working through ALL THESE BOXES for months. This is what our basement looked like in December!

This is our current view! If it weren't for Peter, I would still have the boxes floor to ceiling. I honestly don't have the where with all to deal with any of this. 

Not sure about you, but to me this looked daunting. Keep in mind that before my parent's moved in, Peter and I packed up our home of 20+ years in the District of Columbia months before and moved to this house. So we had just completed one big move, when another one was thrust upon me. 

A cleared out space! Eventually I will figure out how we want to use this space, but for now this will do. The beds you see here belonged to Peter's mom and Peter's aunt. Peter's grandfather made the headboards for the girls when they were children. These beds were handed down to us and Mattie used them! Therefore as you can imagine they had sentimental value to us.

Monday, August 22, 2022

Monday, August 22, 2022

Tonight's picture was taken on August 5, 2009, literally a few hours before Mattie took his CT scan and we learned his prognosis was terminal. While Mattie was in the outpatient physical therapy clinic, I was very distracted. I was trying to participate in the therapy session with Mattie and at the same time I was speaking with doctors and trying to coordinate more scanning for Mattie. It was within this therapy session that Dr. Shad called me and told me that a CT scan was definitely needed because something was seen on the ultrasound. I had been telling the doctors for a month that something wasn't right with Mattie. That day the data was captured on the scans, data that I really did not need, as I knew my son and what he was experiencing. Despite all that Mattie was coping with, look at that smile and the energy he put into his physical therapy session. 

Quote of the day: The human capacity for burden is like bamboo- far more flexible than you’d ever believe at first glance. ~ Jodi Picoult

Yesterday we went out to dinner. We go to the same place every Sunday, and Cheryl is our amazing server. While having dessert, my mom snapped this photo of us. To me I see so much in this photo..... I am exhausted and Peter is stressed. It is a familiar state for both of us, but honestly I do think we deserve a break. As I have been intensely caregiving for what feels like a lifetime. 

Some may say that Mattie's battle only lasted 14 months and that was 13 years ago. But that 14 months was like 14 years in length because the day to day, hour to hour traumas I managed stays within me. It is hard to describe but cancer knocks out not just the patient, but the entire family and of course coping with the loss of an only child will be something I will never get over. On top of dealing with all of this, I now have the care of both of my parents. 

My daily routine is tedious and as humans I do think we need two things, one: some control over our lives, and two: new experiences. The unfortunate thing about caregiving is you lose both of these things. I think new experiences help to keep us alive, motivated, energized, and in some cases are restorative. The scary part about my days is I know they WON'T get any better than they are right now. As both of my parents have issues that are progressive and of course my hope is that I will be able to manage whatever comes my way in the future. But Mattie's illness taught me that so much in life is out of my control and so MUCH is bigger than me and what I can handle.

Sunday, August 21, 2022

Sunday, August 21, 2022

Tonight's picture was taken on August 26, 2009. Mattie was still home at this point despite the fact that we were managing his intense pain and trouble breathing. As you can see, Mattie (with the help of his art therapists) created a big roach constructed out of paper. In his hands was a big fly swatter. Something he got during his 7th birthday party hosted by Reptiles Alive. When I look back at this photo, I have no idea how on earth Mattie was able to smile. It really was a great feat, because any adult in his shoes would have been distraught, dejected, and depressed.

Quote of the day: It can be rough going to maintain both composure and empathy in these situations, but a doctor's failure to do that is probably the number one reason why patients feel dissatisfied with their physicians and end up doctor-shopping endlessly. ~ Danielle Ofri

It is around 1:30pm, and this is my current view. I think what makes me so angry about all of this is I have tried to talk with my mom about sleeping later in the morning. At least on the weekends, so I can get more rest. But she refuses, regardless of what I say, she's up at 5:30am every day. Of course why not? Because as soon as my parents have breakfast they can sleep the day away. But once I am up, I have things to do and non-stop chores. Therefore there is NO rest for me. My daily view looks like this, the only difference is the change of clothing. It is important for me to take these photos because my parents have NO recollection of napping and sleeping. When I tell them that they can sleep the day away, they disagree. But photos don't lie. 

It is day in and day out of the same routine. There is no room to talk about anything else other than bowel movements, exercise routines, and the list goes on. I am very aware that this is not a normal way to live, and yet this is my life. It takes a lot of inner strength to manage and cope without losing my mind or spirit. 

Yesterday Peter was cleaning out parts of the garage. In the garage I have a corner filled with walkers! Like I used to have a collection of strollers for Mattie, I now have a collection of all wheeled gadgets for my dad. Literally in the house I have four walkers, one seated rollator, a wheelchair, and this upright rollator. 

This photo shows the upright rollator. My dad's in-home occupational therapist gave it to us. One of her patients gave it to her because he no longer needed it. It was very thoughtful of Donna to give it to us. I had hopes that my dad would use it to walk up the block and back. Forget it. Getting him to move requires practically a miracle. He complains, says he's tired, and does whatever it takes to make me miserable while holding him accountable to his therapy routine. In any case, yesterday Peter and I made the executive decision to donate this upright walker. I figured someone might as well get use out of this good piece of equipment.

So I put a couple photos of this rollator on Next Door. I can't tell you how many things I have given away on Next Door. It is a great app and for the  most part, everyone who commits to pick up items, does. In any case, after posting this free item yesterday, I got a message about thirty minutes later from a woman who said she knew a 79 year old woman who could really benefit from this rollator. So she picked up the rollator later in the day. 

I have come to know that the lady who wrote to me and picked up the rollator is a primary care physician and she was picking up the rollator for HER patient! What doctor does this, and on a Saturday, no less??? I wrote back to her because I was beyond impressed with the level of care, compassion, and concern she has for her patients. Needless to say, we have been chatting back and forth and I have learned that the doctor is coping with ovarian cancer and her only son died from suicide. She has learned that what ultimately brings her happiness is HELPING OTHERS. This woman and I are on the SAME plane and we speak the same language. I have NO DOUBT her personal insights and loss make her an extraordinary doctor and through our conversations, it reminded that we made the RIGHT decision to donate the rollator. This rollator was meant to go to this 79 year old patient who herself is recovering from breast cancer treatment, which left her with osteoporosis. It is my hope that the rollator provides the patient a better quality of life.