Saturday, September 17, 2022

Saturday, September 17, 2022

Tonight's picture was taken in September of 2008. That day Mattie's technology teacher, Mary, came to the hospital to visit him. Mary was a regular! She practically came every week or every other week to chat, work, and in a way entertain Mattie. While Mary was with Mattie, I would go into the hallway and pull myself together. I very much appreciated these breaks and outside stimulation for Mattie. Because I was Mattie's parent, playmate, nurse, and caregiver. Many roles to serve. Mary brought Mattie his own laptop from school. He was very excited and that year with each hospital admission we did, the computer came along. 

Quote of the day: As someone who has lived the nightmare of losing a child, I know that the enormous hole left behind remains forever. ~ Arthur Honegger

A Tiger Swallowtail at our butterfly bush! September is childhood cancer awareness month, as well as the month Mattie died, so it seems symbolic that we are surrounded by butterflies!

A Palamedes Swallowtail! We get all kinds of flutterbys!

Can you see the katydid? 

A typical day. When they are sleeping, I am working me head off on other things. However, their sleeping comes it bits and pieces, which is why I can never get much accomplished. I also hate where my office is located in the house. It is located right in the middle of grand central station. 

The highlight of our day. Peter's cousins in Missouri, sent us this wonderful Edible Arrangement. Thank you Cheryl and Steve!

I am very grateful for the support, care, and kindness we still receive from Team Mattie. My caregiving is very different now, yet those closest to me get what I am up against. Fruit and chocolate brings happiness to my weekend. 

Friday, September 16, 2022

Friday, September 16, 2022

Tonight's picture was taken in September of 2008. Mattie was about one month into treatment. That day, we were invited back to Mattie's preschool playground to meet up with Mattie's friend Alex, his teachers, and the director of the school. They all wanted to support us and I will never forget this day! It is hard to believe that Mattie's preschool NO LONGER exists. It was bulldozed and turned into an apartment complex. It truly is a loss to our entire community and whenever I pass the location, all I can think about was the amazing memories and friends made in this incredible space. 

Quote of the day: We bereaved are not alone. We belong to the largest company in all the world — the company of those who have known suffering. ~ Helen Keller

My days are chaotic. The one thing I look forward to at the end of the day is watching TV. We have been watching all sorts of series but the latest one we completed was Inventing Anna on Netflix. I found it and was intrigued immediately by its description because it is based on a true story. The sad part about this is there are only 9 episodes to the series and Netflix hasn't renewed/continued it. Anna is a fascinating person and I naturally gravitated to the story because I have always been interested in the psychology of people. What motivates them, what makes them tick, how they treat others, and their priorities, thoughts and feelings. Though the series doesn't focus on Anna's mental health diagnosis, I am quite certain she has a personality disorder. 

Anna Sorokin, also known as Anna Delvey, is a con artist and fraudster who posed as a wealthy German heiress to access the upper echelons of the New York social and art scenes from 2013 to 2017. Born to working-class parents in the Soviet Union, Sorokin emigrated from Russia to Germany with her family in 2007. 

There are aspects of the series that I hate, like the cursing, but Julia Garner, who portrays Anna does an outstanding job. She sucks you in and makes you want to truly understand Anna and the people who succumbed to her cons. In the end however, everyone Anna hurt lands up becoming famous and thanks to stories and books have become wealthy themselves. The series makes you truly evaluate whether people do things in life without some sort of benefit to them. 

I honestly think this is a worthwhile series to watch and if you aren't sure, check out the trailer:

The reporter, Jessica Pressler, who investigated Anna wrote an article for the New Yorker and from her work, the Netflix series was created.

"Maybe She Had So Much Money She Just Lost Track of It Somebody had to foot the bill for Anna Delvey’s fabulous new life. The city was full of marks."

https://www.thecut.com/article/how-anna-delvey-tricked-new-york.html#_ga=2.82859668.307659006.1663376119-1774016865.1663376119

Anna's friend, Rachel, wrote an article in Vanity Fair. Rachel was one of the people conned by Anna. In the end she wrote a book and sold rights to her story and made a significant amount of money. Profiting from the actions of her friend. The series makes you wonder about whose behavior was actual worse... Anna's or Rachel's?

https://www.vanityfair.com/news/2018/04/my-misadventure-with-the-magician-of-manhattan

Thursday, September 15, 2022

Thursday, September 15, 2022

Tonight's picture was taken in September of 2008. Mattie was home from the hospital, between treatments. That day his good buddy, Zachary came over to visit. Zachary and Mattie met each other on the first day of preschool in 2005. They became instant friends and their friendship continued into elementary school, despite going to different schools. I think certain people are drawn to each other and this was the case with Mattie and Zachary. Though they had a very active friendship (pre-cancer) that involved running around and jumping, Zachary adapted quickly and met Mattie's needs. It was truly an incredible sight to observe in a six year old. That day, Zachary brought over an Indiana Jones hat and gear for Mattie. Though Mattie never saw the movie, he liked it, because Zachary liked it. I will never forget their friendship and how much I learned from both of them. 

Quote of the day: We all want to do something to mitigate the pain of loss or to turn grief into something positive, to find a silver lining in the clouds. But I believe there is real value in just standing there, being still, being sad. ~ John Green

Our plumber came over this morning to check out our water filtering system. His name is Cody. He is one of our favorite people to work with, and was instrumental to us when we first moved into the house. He is such a good guy, that we can text him at any time and he responds. In fact, he introduced Mattie Miracle to his company and now his company is a sponsor and also contributes gifts in kind. Any time Cody comes over, I bake for him. He loves sweets as much as I do, so last evening Peter and I baked cookies together for Cody and us. My dad LOVES chocolate chip cookies, so he was very happy with our baking decision.

This morning I got both of my parents out the door at 10:45am. My dad had a physical therapy appointment at the hospital and I have to leave an hour before the appointment to drive there, get my parents up to the hospital's atrium, have my mom go to the bathroom and then find her a chair and table to sit at to have tea while I go to the therapy session with my dad. I am constantly on the move and juggling needs! 

I know Peter and those closest to me are worried about me. For good reason. I am taking on a HUGE, HUGE task. Caregiving for one is hard, two is practically impossible. My dad is needy and requires constant attention. Though that alone is hard, it is my mom who sends me right over the edge. She can be hostile, snappy, demanding, opinionated and self focused. To top off this personality issue, she also has significant movement disorder issues which we are trying to get diagnosed. Therefore, my role as a caregiver is all consuming, both physically and mentally and as Peter has pointed out to me..... we have lost our lives. I can't argue with him, as I am more than aware of the fact that I have lost myself in this process as there is no time to work or take care of myself. 

I know something has to give, because if I get sick, this whole routine comes to a stand still. I do the job of about ten people on any given day and it takes a lot emotionally to keep everything even keeled. Some days I am more successful at it than others. It is very complicated when your parents live with you, as I just don't see even bringing in an aide for four hours a day as being helpful. Because at the end of the day, there would be 20 more hours that I would still have to maintain and balance. My dad is really flexible and would do whatever I suggest, my mom is a completely different story. She shoots down whatever I suggest and though she thinks she has many interests and abilities, she truly has lost all of them. It is a sad reality, but one that I have to face head on. 

Wednesday, September 14, 2022

Wednesday, September 14, 2022

Tonight's picture was taken in September of 2008. That week we took Mattie to NYC to be evaluated by a big cancer institution to confirm the treatment plan presented to us in Washington, DC. In addition, this hospital was offering an experimental treatment, and we needed to sign up for it at that institution first in order to get it administered at Mattie's hospital. That day we took Mattie to the Natural History Museum, as Mattie was fascinated by dinosaurs. But you can see from this photo that Mattie was going through a difficult time and the stress was taking its toll on his mood, personality, and spirit. 

Quote of the day: Grief, I’ve learned, is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go. ~ Jamie Anderson

It was another nutty day of driving all over the place. In the midst of this chaos, I have been reflecting on a house Peter, my mom, and I toured several weekends ago. We went to this open house and immediately Peter and I took notice of the butterfly themed art work, collectibles, and photos all around the house. Most people at the open house probably saw these things but had NO IDEA the meaning. Unfortunately we got it right away. We knew this signified child loss. So Peter asked the realtor the significance of the décor and we were correct. The couple's teenage daughter died tragically in a car crash. Naturally we absorbed this information, the tributes to this girl throughout the house, and even the memorial plaque in their backyard. 

Weeks later, we are still talking about this. This 19 year old died in 2005. When she died, the family was living in a completely different part of Virginia. They moved to the house we visited years after their daughter died. Therefore, their daughter never lived in this current house. Do note however, that her parents have a bedroom for her in this house and it is decorated most likely the way it was in their previous house. I mean every detail is reflected in this room from photos, stuffed animals, and other items a kid/teen would cherish and display in one's room. This whole notion bothered my mom. She couldn't understand why this family decided to reserve a room in their new house for their daughter. After all this teenager is not alive and can't ever use it. 

Certainly I get my mom's perspective but having the lived experience of child loss, I also understand that these decisions are personal. What works for one bereaved parent, may not work for the next. What I do know is we have to find a way to deal with the grief and loss in our own way. So if preserving their daughter's room gives them peace and they feel this is a tribute to her life, then who are we to judge?

What also caught my attention is the fact that their daughter died 17 years ago and yet by touring their house it is very clear that for them it is ever present and time has played no part in their healing process. Not that I feel vindicated by this, as this brings me no happiness for them. But it does confirm my feelings that forever losses are just that..... you don't get over them, ever! You just find a way somehow to continue living while carrying this grief. 

Tuesday, September 13, 2022

Tuesday, September 13, 2022 -- Mattie died 676 weeks ago today. 

Tonight's picture was taken in September of 2008. Mattie was home between treatments and as you can see we already needed IV hydration back then. It was early on in Mattie's treatment but chemo impacted his ability to eat and drink. Therefore, I would say that Mattie lived on IV hydration for a year. I remember back then how challenging it seemed to maneuver an IV pole. That was the least of our problems, and it is funny how one puts things into context quickly. Mattie loved Patches our cat, and when he was dying he wanted Patches in the hospital. This request wasn't honored. I understand why, but these two never got a chance to say good-bye to each other. Patches was devoted to Mattie and she understood quickly the day Mattie was born that he took priority and she had to behave around him. We did not train her, she was just a smart cat!

Quote of the day: Grief does not change you. It reveals you. ~ John Green

Last evening we had a torrential rain storm, after which the sun came out. I told Peter... let's look for rainbows! We opened our front door, and we saw a double rainbow. I have never seen such a vibrant and vivid rainbow. The colors were practically jumping out at us. 

This is Miss Indie! She is a very curious cat and where ever we go, she wants to follow. She wanted to know why we had the door open and came to examine all the activity. 

Look at these vivid colors!

It was another busy day. I got up at 6am, in order to get my parents out the door by 9:20am. My dad had a doctor's appointment this morning. I can't tell you how stressful morning appointments are as I feel like I am herding cats. By the time I get into the car, I feel like I have gone ten rounds. 

My dad met with his physical rehab doctor. This is the doctor who cared for him back in March, post pacemaker placement. Back then my dad spent a second week in the hospital in acute rehab trying to regain strength. My dad has NO MEMORY of spending two weeks in the hospital. I mean NOTHING! He doesn't even remember this doctor we visited today. This is the same doctor that has prescribed my dad PT, OT and speech therapy in the outpatient clinic. I feel this is an important contact for my dad and us, just in case he lands up in the hospital again. The doctor felt that my dad looked like a night and day difference from March. Mainly because I am feeding my dad well and keeping him as active as possible. The doctor basically said that I am doing a good job and the pulmonologist who saw my mom about a week ago, said the same thing to me. All I know is I am working around the clock to keep them stable. 

After the doctor appointment, I got my parents in the car and we filled the car up with gas and went to the post office. I then returned them back to the hospital, as my dad had a physical therapy appointment. Before the appointment we sat in the hospital atrium for about thirty minutes and my mom and I had hot tea, we listened to the piano music, and even saw a beautiful quilt display on 9/11. It was actually very moving. 

I came across this short video of two doctors who basically started out their career that day at Virginia Hospital Center's ER. Apparently these two physicians are still at the hospital and I can only imagine how the day transformed them. The president of the hospital discussed how the team of doctors and nurses that day were expecting mass casualties and were lining up outside the hospital. But unfortunately the reality sunk in, that most of the people at the Pentagon were consumed by the horrific plane crash and the fire that ensued. 

The hospital's atrium features this beautiful handmade quilt and countless plaques and awards given to the hospital for their outstanding care provided on 9/11. This is the closest hospital geographically to the Pentagon.

A photograph captured on 9/11/01 showing the healthcare teams waiting outside the ER for victims of the Pentagon attack. 

Monday, September 12, 2022

Monday, September 12, 2022

Tonight's picture was taken in September of 2008. Mattie was a month into treatment and if you look closely you can see a very unhappy camper. Mattie wanted to hide and to escape the noises from his hospital room. So we created a tent like structure made of blankets on top of his bed. Inside the tent was a sad, uncomfortable, and anxious Mattie. These were the sights and sounds that I absorbed all day and night, and though you may get bits and pieces of what I am trying to describe, words can't possibly do justice to the daily fears and stresses we faced. 

Quote of the day: I will never forget the moment your heart stopped and mine kept beating. ~ Angela Miller

Our power was out for 11 hours yesterday, from 3pm to 2am. The issue was a tree branch took down power lines in our neighborhood. It was a very eerie feeling to see darkness all around us last night. There are only two of us on the street with a generator. Many of our neighbors did not understand why we wanted to install a generator when we moved in, as they said they rarely have lost power. But with my parents living with us, we weren't going to take a chance. All I know is since we moved in, we have had MANY power outages at all times of the year. 

The highlight of yesterday was to see two deer (mom and baby) on our front lawn. Peter views them as pests as they eat all our roses and other flowering plants. I get it, but I still love seeing them, and I know full well that this would have been a sight that Mattie would have approved of, as he loved seeing animals with their mothers. 

It was my usual chaotic day. I got my dad up, washed, dressed, and had breakfast. He then went to his memory care program, as I took my mom to physical therapy. Honestly my days are filled with managing needs, issues, and more needs! I joke that I am running a nursing home, but I am truly not kidding. I wanted to spend a portion of today writing the Foundation's September newsletter, but in typical fashion here I was interrupted every two seconds. It is frustrating and stressful and at times I can feel waves of anxiety come over me. When this happens I want to literally just leave the house and everyone around me behind, so that I can get a moment of freedom, peace, and no demands pulling on me. Of course this never happens, and thankfully I find a way to re-equilibrate.  

It takes a lot of inner strength to manage these tasks each day, as both of my parents ask the same questions over and over, they have constant needs and demands and expect things done instantaneously. They no longer have any insight that others exist in the world and some of us may actually have needs too. 

Sunday, September 11, 2022

Sunday, September 11, 2022

Tonight's picture was taken in September of 2008. This was before any of Mattie's limb salvaging surgeries. So he was able to walk and do independent activities. As you can see by this point in Mattie's treatment (two months in), Mattie lost his hair. Despite all the new adjustments however, Mattie still loved creating, playing, and building. Those things remained consistent throughout his journey. Thankfully as activities were our diversions and provided moments of sanity through very long and arduous days. 

Quote of the day: Grief is like a long valley, a winding valley where any bend may reveal a totally new landscape…. there is something new to be chronicled every day. ~ CS Lewis

On the 21st anniversary of 9/11, I certainly remember and will never forget where I was on that horrific day. I was home in Washington, DC and Peter was at work in Virginia. I was pregnant with Mattie and had my first OB/GYN appointment that day. Needless to say, that never happened. Instead, I was glued to the television and worried about how Peter was going to get home. I was also worried that we would be a target somehow as we lived so close to all the monuments in the city. Peter said the drive home was eerie as people were escaping the city on car and foot, and yet he was driving back in. It was a day never to be forgotten, nor will I ever forget the lives of thousands taken that day and families that are forever changed. 

My goal was to get a lot done today! I started working on the Foundation's September newsletter, and I got side lined by having to create our annual candy and item drive wish list. I can't tell you how long that took and I wish Amazon made it easier for me to update lists from year to year without having to recreate them. In the  midst of working, I had my dad jumping up and down to go to the bathroom and NOW, we are totally without power. I have no idea why! All I do know is if we did not have a generator this would be very challenging to manage with my parents.