Saturday, July 24, 2021

Saturday, July 24, 2021

Tonight's picture was taken on February 14, 2009. Mattie worked several hours in the child life playroom with his art therapists to create a Valentine's Day surprise for me. When I was allowed into the playroom, Mattie surprised me with a box of Valentines and a crown of hearts. This box has remained in my closet all these years. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 34,400,655
• Number of people who died from the virus: 610,720

Peter and I divided and conquered today. He and Sunny went to the house and I stayed back in DC to begin the cleaning out process. The painters were at the house all day today, they have gotten it together and are really working hard. We treated them to pizza, chicken wings, sodas and fruit today. I strongly believe in rewarding dedication and effort, and they have worked two weekends in a row. This is a pre-painting photo of our family room. There were holes in the wall, and the orange rectangle you see was left on the wall, after the former owners removed their TV from the wall. The previous paint was a grey color. I am NOT a grey person at all, and between the old color and the fact that the house hadn't been painted in 20 years, it really needed a refresh!

 

This is what the room now looks like. We removed the old mirror over the fireplace, all holes have been patched and the colors we selected are Medici Ivory and Extra White (on the baseboards and trim). You can't see it, but even the seams in the ceilings have been fixed. As there were two 10 foot cracks in the ceiling. 

Meanwhile, I decided to focus in on our walk-in closet today in Mattie's room. This closet has been a God sent. I can't tell you everything I store in there! Which is why we could live in this townhouse for 26 years, because the closets here are FABULOUS! 

Over the years, Peter hung shelves in the closet for me, which enabled me to try to organize things better. I have Mattie memorabilia, Foundation materials, supplies, and you name it! It's in there. I can't tell you how many times I have cleaned out this closet over the years. I try to do it every five years at least, otherwise, I wouldn't be able to get into it. Certainly since Mattie died, I have combed through it several times. As more time passes since Mattie's death, I am able to actually make more sound decisions about his physical belongings. Some I can easily donate, and of course there are others that will just get re-organized and boxed to come with me. 

Mattie's room, or my office, looked like a bomb went off in it today. I started pulling out all sorts of things from the walk-in closet and when I tell you I was at it all day, I am not kidding. Yet if you look at what I done, it doesn't look like I even made a dent! I threw out a large garbage bag of old papers and have four large garbage bags for donation. 

While going through the closet, I found Mattie's valentine's box. The box I mentioned above in the photo of the day. This box means a great deal to me, but today I finally did something about it, as I had a spare shadow box in the closet looking for art work. 

Inside the valentine's day box. The box was filled with all sorts of Mattie creations, include the crown of hearts!

I arranged some of the meaningful pieces Mattie created and hot glued them inside a shadow box. If you look at the top left corner and travel down the diagonal, you will see the word, MOM spelled out. Mattie painted a MOM card for me. I cut the letters apart, so each one can be seen in the shadow box. I even hot glued the crown of hearts into the composition, along with several of the valentine's that Mattie actually signed. I am so glad that I will now be able to feature Mattie's work on the wall, rather than it sitting in a box. I have done this with many of his other pieces over the years. 

Inside the Valentine's box was also this dancing heart! You have to love Mattie's whimsy!!

What I did not remember was that I stored the funeral books that people signed in the closet, along with countless letters people wrote to me about Mattie. Because they are so meaningful, I have left the letters out, as I plan on typing them into the blog to share them. As I love hearing about Mattie through other people's reflections. 

Friday, July 23, 2021

Friday, July 23, 2021

Tonight's picture was taken in July of 2006. Mattie was four years old and that week, we took him to Boston to visit Peter's parents. As you can see, we went on a strawberry picking adventure. With Mattie I got to experience so many new and different activities, and the fun part was seeing these activities through his eyes. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus:34,325,358
• Number of people who died from the virus: 610,431

A day NEVER to be forgotten, July 23, 2008! A day that changed our lives FOREVER! Thirteen years ago today, Mattie was diagnosed with Osteosarcoma (bone cancer). In July of 2008, Mattie was enrolled in a tennis camp. A week into the camp, Mattie complained of arm pain. We figured he sprained something or had a sore muscle from holding the tennis racket.

While enrolled in camp, I attended a conference in San Diego. Each night while I was away I checked in with Peter and I continued to hear that the arm pain wasn't getting better. Before leaving San Diego, I made a doctor's appointment to take Mattie in the day after I landed back home.

Fortunately Mattie's pediatrician took our complaints seriously, as I told her the issue had been going on for two weeks, with no improvement. From the doctor's office, we walked over to Virginia Hospital Center for x-rays. I admit that I got very frustrated with the radiology tech, because what I deemed should be an easy x-ray process turned into an hour long fiasco.

After the x-rays were taken, the tech told me to go to a waiting room. I will NEVER forget this room. Mattie and I walked into a room filled with adults. NO hospital representative was in the room, only patients and ONE phone. We sat down and within five minutes the phone rang. NO ONE went to answer the phone, it just kept on ringing. So I decided to pick it up. On the other end was the radiologist, who asked for Mattie Brown's mom. When I told him I was Mattie's mom, he then said I needed to go right back to the pediatrician's office. I said, ABSOLUTELY NOT! I wasn't leaving that room until he told me what he saw on those x-rays. He did not want to tell me, but I forced it out of him. So I heard that Mattie had osteosarcoma over the phone, surrounded by a group of strangers and Mattie staring at me. I tried not to sound alarmed but it's a bit hard after hearing...... your child has cancer.

July 23, 2008, was my first experience with medical trauma, and unfortunately that was just one of many traumas we experienced as a family. You maybe asking what's with these photos and the Christmas lights in July? Mattie requested that we take all our Christmas lights out on diagnosis day. He did not understand cancer, but he knew enough to know that something was very wrong and that the bright lights of Christmas may help lift all our spirits. The beauty of Mattie Brown..... you are dearly missed today and always.

Thursday, July 22, 2021

Thursday, July 22, 2021

Tonight's picture was taken in July of 2006. That day Mattie was invited to his friend, Kate's birthday party! The party was held at Build-A-Bear. This was a first for both of us, as we had never gone into the store before. Mattie had a great time, and it did not bother him at all that the majority of kids at the party were girls. They enjoyed the activity of building a teddy bear and sharing in the experience together. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 34,270,335
• Number of people who died from the virus: 610,114

Today was day 2, in which I did not go to the house. I did not miss it at all. Instead, I caught up on Foundation work, completed an application to try to qualify Mattie Miracle for a non-profit Shark Tank contest, walked Sunny, and the list went on. For 26 years, we have been very lucky, we can walk right out of our complex and we are about two blocks from the National Mall. The Mall really saved us during COVID. As the government did not shut it down, like they did with national parks. Walking became our therapy, and it was needed not only because of lock downs, but because Peter was without a job. Stress levels were high and naturally Sunny never turned down a walk. 

For the past month, I have walked Sunny by our house, rather than in DC. But since I am staying put for three or four days this week, that meant I had to start back up with our DC walking routine. I love people watching, and therefore walking around the National Mall enables me to see historical sites (Lincoln Memorial, the Reflecting Pool, the Washington Monument, etc.) and the multitude of people who visit the Mall on any given day. Actually the Mall is a fascinating place because it is filled with natural beauty, wildlife, and historic monuments. 

In the midst of everything else happening this week, the anniversary of Mattie's diagnosis is tomorrow. It is hard to believe that our lives changed 13 years ago, as it seems like it was just yesterday. I tie Mattie's diagnosis to my birthday (which falls two days later), so given all of this, there is NO WAY I am also going to the house this week to manage the rudeness and disrespect of this painting company. For me it is like the perfect storm, of Mattie's diagnosis anniversary, my birthday, and the whole notion of moving. Moving to me symbolizes another big loss, a severing of my only physical space that was connected to Mattie.  

Wednesday, July 21, 2021

Wednesday, July 21, 2021

Tonight's picture was taken in July of 2007. That day we took Mattie to Roosevelt Island. A place we visited practically every weekend. Right from the moment Mattie was born, he did better not being confined and preferred the sounds of nature and fresh air. I wasn't a big nature person until Mattie came into my life. However, thanks to him, I now prefer being outside and I carry on Mattie's love for trees, plants, animals, and long walks!

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 34,217,658
• Number of people who died from the virus: 609,823

Today was my first day in over a month where I haven't gone to the house! It felt wonderful. The back and forth and managing all these people has become super stressful. Especially since I have a contentious relationship with the painters and their manager. The manager is a 20 something with an attitude, who likes to give me lectures. I am in no mood for lectures about my own house. 

I tend to channel stress and anxiety inward. My latest habit is biting my tongue. I bit my tongue so hard that it hurts to swallow, eat, and talk. Ironically when I am home in DC, I don't bite my tongue, but as soon as I step foot in that house, the anxiety and stress take over. Honestly just trying to renovate and deal with painters, electricians, HVAC people, plumbers, tile floor people, and wood floor people, is more than I can handle. The notion of turning my attention to disassembling our DC home, and sorting through things to either donate or throw away is something I can't even wrap my head around. 

Our DC home has a Mattie room. It was the room we brought him home from the hospital in 2002 and where he kept his things for seven years of his life. After Mattie died, I eventually transformed the room to my office and guest room. Yet Mattie's things still surround me. Certainly many of his things will come with us to the house, but none of our rooms will ever be Mattie's room.  

Tuesday, July 20, 2021

Tuesday, July 20, 2021 -- Mattie died 616 weeks ago today. 

Tonight's picture was taken in July of 2007. That summer we bought a bigger kiddie pool for our deck. Mattie loved it. It took up practically half of our space, but we made it work! Typically the pool did not look this empty! Mattie loved to throw all his toys in the pool and he used them in his elaborate play schemes! It is amazing all the activity our deck saw at one time. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 34,157,936
• Number of people who died from the virus: 609,437

Another early morning here! It was a full day with the painters, electrician, and the replacement of an air conditioning unit. I wish I could say we were done, but the electrician will be with us at least two days next week and into the following week as well. In fact, next week our electricity gets shut off for the entire house for a day, as electrical work needs to be done. The electrical panel that is currently in the house is not up to code, and this translates down to many electrical connections in the house. Thankfully we have solid support with HVAC, heating, electrical, and plumbing. Everything else seems to be much harder to manage.

The painting project manager doesn't like me at all. He was walking through our home today with the painters, he waved, but wouldn't talk to me. Very mature! It is all the little things that add up to one big headache. Meanwhile in the midst of all of this, I am trying to apply for a funding opportunity for Mattie Miracle. I was outside on the porch minding my own business and working on the application, when the neighbor I deem the "town crier" came by. Because I did not answer my front doorbell, he came around back and tried to help himself into the backyard! However, we installed locks on ALL of our gates. So no one is legally getting back there without me knowing it! Needless to say, he saw me on the porch, and I let him in and of course he wanted to sit down and chat. I don't mind two way conversations, but that typically doesn't happen with the town crier type. 

This is another thing I will miss about our townhouse in DC. The privacy! You aren't getting to my front door without going through our front desk. This will be a big adjustment for me with owning a house! So putting up boundaries will need to happen, otherwise I can see a problem developing. 

Monday, July 19, 2021

Monday, July 19, 2021

Tonight's picture was taken in July of 2007. That day, Mattie was at a swimming class. His teacher's name was Margaret. Mattie was very cautious around water, but was making excellent strides in his group class. Parents were NOT allowed by the pool during class. We had to watch from a glass enclosed gallery. Not my favorite view, but nonetheless, I watched every lesson and as you can see tried to take photos. I honestly do not know how Mattie even got in the water, as this indoor pool's water was like a refrigerator year round. But Mattie was a good sport.

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 34,124,341
• Number of people who died from the virus: 609,204

I honestly feel like I am living a manic life. Even sleeping isn't restful. Last night, around 1:30am, Peter and I awoke to a buzzing sound. At first I had no idea what it was, but then we followed the sound and it was coming out of our alarm box by the front door. When we moved into our townhouse, it had an alarm already set up. For the first few years we actually used the alarm. Then given how safe we felt in our complex, we canceled the service and haven't used this alarm for probably TWO DECADES. So why was the alarm box buzzing? Our fear was if we couldn't stop the buzzing, a full fledged alarm sound was going to go off and wake every one up. So we scrambled around, Peter removed the box and cut the wires. That stopped the sound! It is truly odd that this would happen now, over twenty years after disconnecting the alarm service. All I can think is the alarm line was connected to our land line phone number. Since I had that number transferred to the house in Virginia, perhaps that triggered the buzzing? I have no idea. But there is not rest for us. 

I got up at 6am, so we could leave DC by 7:30am. We met the tile and HVAC folks at 8am. I absolutely love Ed, the person who cleaned our tiles, recolored the grout to the color of my choosing, and then sealed the floors. I have to take photos! If you saw the before and after, you wouldn't believe it. We went from black and dirty grout, to ivory grout that is sealed and won't show dirt again! Even the HVAC person was wonderful. Who wasn't wonderful is the painting company. The people painting are actually doing a good job, minus leaving doors and windows open, but the people managing the project are driving me crazy. The manager has to be in his late 20s and thinks he knows everything. He likes to lecture me about how I am making things difficult for the team. Today I let him have it and also called his boss. Not surprising, the boss has a similar personality as the project manager. I honestly can't wait for painting to be done! As they have taken over our home and there appears to be no end in sight. 

Sunday, July 18, 2021

Sunday, July 18, 2021

Tonight's picture was taken in July of 2007. That week we took Mattie to Boston to visit Peter's parents. While there, Peter's mom gave Mattie a large puzzle of Tutankhamun. Mattie assembled the puzzle, as he was a BIG puzzle fan, and then decided to get down on the floor with it to see who was taller, the puzzle or him. Clearly Mattie wanted to show us he was the winner. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 34,078,832
• Number of people who died from the virus: 609,018

Today was supposed to be a break for us! A break from running to the house! That did not happen. Thankfully we have an alarm system that pushes messages to us on our cell phone when things open or there is movement in our front or backyard. At 8:20am, it told us that a door was open and thirty minutes later the door was still open. We saw no record of the painters coming in or out, so that meant we had to go to the house to check it out. 

Turns out the painters never fully shut the door. In addition, they left many of the doors unlocked and windows opened. This is a huge security concern, not to mention an invitation for the wildlife to come on in. We have a resident fox that visits our house daily at night. So we are lucky he did not help himself inside. 

Windows were found open! This is a huge problem, especially when I told the project managers that all windows and doors must be shut and locked before everyone leaves. 

I should mention that the project manager gave me a LECTURE on Friday! I took it, but I don't like to be lectured, especially when it is in regards to a job I am paying for. The project manager told me all his people were going to be working on Sunday, in order to meet my deadline. He says NO ONE works on Sunday, but given the nature of this job, it has to be done. 

BY THE WAY NO ONE WORKED TODAY! We were there all afternoon, and even when we are not there, our alarm system recorded no other entries. 

Another bone of contention is the thermostat. We had notes all over the first floor, that the thermostats couldn't be touched. Despite our notes and directly conveying this message, the workers lowered the temperature. I get it, it's hot! But it makes no sense to leave it this way, if you are keeping doors and windows open overnight. 

The reason we asked that the thermostats NOT be touched is because the air conditioning unit in the basement is totally frozen, with ice all over it. We have been trying to get the ice to thaw for days now, and with them lowering the temperature, the ice is back! Which makes it harder for our HVAC people coming to work on the system tomorrow. 

Needless to say, Peter and I are frustrated. We wrote to the project managers today and showed them the same photos I am showing you here. In addition, I asked for the phone number of the owner of the company, and will be contacting him tomorrow. I am disappointed because we have really tried to be accommodating and kind to the painting team. I have bought them sodas, water, cookies, and cupcakes. They know they can access our refrigerator anytime they want. Yet they clearly have little regard for us and our property. You would be amazed how many wonderful reviews this company gets! But if I had to review them now, it would be a big blow to their reputation.