Saturday, October 23, 2021

Saturday, October 23, 2021

Tonight's picture was taken in October of 2004. Mattie was two years old and that weekend we took him to a Fall festival. A tradition we did with Mattie each year. He loved being outdoors, running around, exploring, and of course checking out all the pumpkins. Mattie was attracted to the color orange. No surprise that his Foundation's color is therefore orange. I love this photo that Peter took of us, because Mattie was a busy body and really did not want to be posing for a photo at that particular moment. But he put up with my request, and thankfully he did, because capturing that moment in time is so important to us.  

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

• Number of people diagnosed with the virus: 45,427,357
• Number of people who died from the virus: 735,800

It was another ridiculous day here. I got up at 7am because I knew we had a lot to get done today and the person coming to give us an estimate on our fence was coming at 10am. Mind you we had no intention of replacing our fence until our neighbor pointed out that our fence (installed by the previous owner) is on his property. The neighbor found this out while he was getting an estimate for the installation of a fence (for his dog) in his backyard. So his need for a fence, has produced yet another big task for us to take on. It just keeps piling up! There is NEVER a break. 

In addition to all we are juggling, walking Sunny has become laborious to me. It takes me 90 minutes to walk him with his sling. Which is probably not comfortable for him, and it most definitely is no picnic for me. Later in the day, we got out of the house, which I was thrilled about. Since we moved here, I rarely get out of the house. But every October, we go antique shopping, to look for Christmas gifts for Peter's parents. Typically we shop at the same store in Falls Church, VA. When we got there today, we saw first hand how the store has been impacted by COVID. Half of the store was boarded up and the items they had in the store, were NOTHING like they used to feature. Just another reminder of the constant changes all around us. Too many changes to adjust to for me this year. 

In the midst of everything else, my computer (which I do all Foundation work) crashed. It has been getting old, and on Friday Peter replaced it. However, the issue now is accessing all my electronic files. I am sure Peter will figure this out in time, but right now I find this very stressful not having access to any of my information. 

We also started working on Peter's walls in his office today. This is one set of photographs that we hung on the wall. It is the geographic series, of many of the places we have been together. The photos are printed on metal and I can't get over how crisp and vibrant the images are, they practically make you feel like you are really there. The beauty of this is the photo is super lightweight and very easy to hang!

Top row (left to right): Sugar silos in Barbados; Beaumaris Castle in Wales; Oranjestad, the port in Aruba; Chichen Itza in the Yucatan of Mexico; Orkney Islands in Scotland 

Second row from top (left to right): Glaciers in Alaska; 14th street causeway bridge in Fort Lauderdale; Red rocks in Sedona, Arizona; Nubble Light in Maine; Monet's Garden in Giverny, France

Third row from top (left to right): Gaudi's Chocolate Model House, Barcelona; View of Nice in France; Inside the Colosseum in Rome; USS Yorktown in Charleston, SC; Roatan in Honduras

Fourth row (left to right): the Vatican in Rome; the Key Bridge in Washington, DC; the port of Monaco; the Grand Canyon; Queen Emma Bridge in Curacao

Friday, October 22, 2021

Friday, October 22, 2021

Tonight's picture was taken on Halloween in 2008. Mattie celebrated the day at both the hospital and with his friend in Alexandria. That day the hospital had a wonderful event for the kids. All sorts of games and crafts, and then we literally went trick or treating around the administrative offices of the hospital. Pictured with Mattie was his best buddy in cancer, Brandon. Mattie and Brandon were diagnosed within weeks from each other. Brandon was wonderful with Mattie, and I think Mattie felt like someone truly understood exactly how he felt. 

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

• Number of people diagnosed with the virus: 45,364,557
• Number of people who died from the virus: 734,889

I feel like today was the day of cardboard boxes! Mattie would have absolutely LOVED this, as he enjoyed creating with boxes. 

This first pile was on our doorstep this morning. It contains all the photographic art work I created for Peter's office. Instead of buying art, I prefer to highlight Peter's photos in his office. The photos were printed on metal and it is a lovely effect. We will be working on hanging them this weekend. 

This is what the above pile of boxes generated. As each photograph was individually boxed inside the bigger box. It took me an hour to open these boxes and break them down. I am very concerned about recyclables! Why? Because we have an attitudinal garbage person. This week, I watched him from my window. He opened our recyclable bin, pulled out two boxes for the truck, and then left the rest of my bin full! I was livid. So livid that I lit up the phone of this garbage company. As I told them, I feel like our recyclables are not consistently picked up and that the person working the truck picks items out of the bins on a whim. 

Just when I thought I was done with boxes, this is what greeted me this afternoon! This is all for the Foundation's Candy and Item Drive. Which of course I appreciate, but the recyclable fellow is NOT going to be happy with me this coming week. I did not have to worry about this kind of craziness at our home in DC. In DC, we had access to the complex's dumpsters! It was absolutely marvelous and I never took that luxury for granted.

Thursday, October 21, 2021

Thursday, October 21, 2021

Tonight's picture was taken on October 5, 2008. That evening we went over to our friend's house for dinner. As you can see, Mattie was having a great time with his "girlfriend" Charlotte. They were pretending to be an animal with Mattie as the head and Charlotte as the tail. Mattie and Charlotte's friendship was instantaneous, as they bonded during the first day of kindergarten. I would say they brought out the best in each other and as Charlotte always said, the plan was they were going to go to the same college and even be roommates. It was very cute! At the tender age of 7, Charlotte taught me a lot. She showed incredible courage, strength, and love for her friend, Mattie. Even when he would push her away during cancer treatment, she found a way to put it his feelings into context, and kept coming back. Mind you visiting a PICU is intimidating even for an adult, but clearly the human spirit is a powerful force and I am glad I got the opportunity to observe it.  

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

• Number of people diagnosed with the virus: 45,270,236
• Number of people who died from the virus: 732,718

After doing some Foundation work today, I decided to try to get the painting in the garage done. I hate that every weekend involves one big task after the other. What was left to do was to the paint the outside of the door leading into the kitchen as well as paint the stairs. I am not sure why the former owner painted the stairs brown when the floor in the garage is grey. The grey and brown next to each other was driving me crazy. I won't tell you how much a professional painter was going to charge us to paint the door, banister, and stairs. Needless to say, we took on this project ourselves. 

Doesn't this look better? To me it was a natural choice. 

Meanwhile this was delivered to our side door today. I have to tell you I am still not used to the fact that UPS, FEDEX, and the mail truck drive up our driveway to deliver boxes and things. Frankly I have never lived in a house where this has happened. Certainly I am used to them pulling over and walking up the driveway or front walk way to get to a house, but around this area, all trucks seem to know..... drive right up the driveway!

Any case these three boxes do not belong to us. They belong to the previous owner, who did email me a few days ago telling me that they accidentally had luggage shipped to their old address. It happens! But the funny part is I played musical chairs with these boxes all day. First I brought them inside, thinking they were part of the Foundation's candy and item drive (yes there are literally boxes being delivered daily.... THANKFULLY). I was about to open them but then stopped to look at who they were addressed to.... NOT me! So then I carried the boxes back outside and into the garage. Of course that was a waste of time, because the former owners emailed me that they were going to pick up the boxes tonight and that I should leave them on the side steps. Back out I went and carried the boxes from the garage to the porch. This comedy show is not unusual around here. In fact if I had a step tracker on me today, I have no doubt it would tell me I walked miles just around the house. 

Wednesday, October 20, 2021

Wednesday, October 20, 2021

Tonight's picture was taken in October of 2008. Mattie was home and recovering from his first surgery. You can't tell, but Mattie's right arm was in a cast and sling, and the jacket was wrapped around him. Given that it was almost Halloween, Mattie was into creating haunted houses. He had one at the hospital made out of cardboard boxes and this one at home was made out of tinker toys. Of course we embellished the house with some pumpkin cut outs and ghosts we made together. 

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

• Number of people diagnosed with the virus: 45,199,397
• Number of people who died from the virus: 730,209

I have seen these enormous spiders in the garden but the other night, one of them was crawling down our first floor hallway. It is a wolf spider, or so I am learning. It is not poisonous, despite it looking that way. To me the spider is super sized, it is about the size of a half dollar coin, but it has beady eyes and it appeared to be staring at me. NO THANK YOU!

This morning I had the plumbers over again! Sunny was disgusted with the plan and despite the fact that he isn't supposed to jump on anything, he did! 

The plumbers were with me for about 5 hours. They replaced the drain and pipe in Peter's bathroom office. The plumber said that the smell coming from the pipe was horrible. So we know it must have been bad, because he says he can't smell most things. Lucky him! I am hopeful that the mysterious smell has now been corrected. Needless to say I still did a baking soda and white vinegar treatment after they left. 

I wish this one bathroom was the only problem. But now we found a major problem in the bathroom my mom will be using. I have left that bathroom untouched because my goal was to renovate it. However, there were way too many expenditures with the infrastructure of the house, so I had to put a hold on renovations. Nonetheless, I found a leak in the sink my mom will be using. I thought it would be a simple fix. It is NOT! Naturally. Instead, it requires the installation of a brand new vanity! I am livid and disgusted at the same time. I feel like I am playing to beat to the clock and I am losing. 

In the midst of this, I got a call from one of our researchers today asking whether the Foundation would host and fund a symposium at a national conference. In addition, I was asked to speak and introduce the symposium. It is in March! Though it would be nice to do, I explained to her that I am managing a three ring circus and my traveling days are quickly coming to a halt. Despite that, I did approve the symposium and began reaching out to our research grant recipients to see if they would be willing to present their research on the implementation of the Psychosocial Standards of Care. 

Tuesday, October 19, 2021

Tuesday, October 19, 2021 -- Mattie died 629 weeks ago today. 

Tonight's picture was taken on October 22, 2008. Mattie was in the hospital recovering from his first limb salvaging surgery. As you can see Mattie was in a wheelchair and couldn't even wear clothes/pajamas. As moving his limbs hurt and he was hooked up to all many different machines. We took him to the child life playroom that day because it was important for Mattie to move around and use his lungs (in order to recover effectively from surgery, without getting a build up of fluid or a portion of his lungs collapsing). That day we had a bubble machine going and were trying to get Mattie to blow bubbles. We came up with all sorts of fun ways for Mattie to use his lungs, but as you might detect from this photo, Mattie's journey with medical traumatic stress was beginning.  

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

• Number of people diagnosed with the virus: 45,107,626
• Number of people who died from the virus: 727,729

Sunny had his second physical therapy appointment today. His therapist is in Leesburg, which takes me 45 minutes of driving each way. So between walking Sunny and meeting his needs today, I lost the day. Again! Since I have moved to this house, I can't get anything done and this is beyond frustrating for me. I miss my former way of life, the bustle of the city, and the ability to have undisturbed time to focus. 

When I got back from physical therapy, I learned that Peter is headed to North Carolina tomorrow for business. I can't tell you how I would love to pack up and get away from here. But that isn't going to happen as I have to focus on Sunny's recovery and another plumbing team is coming tomorrow. We are on week three of dealing with the phantom smell in the bathroom drains! In between chores, I baked a banana cranberry bread. The bread was the highlight of my day.

Monday, October 18, 2021

Monday, October 18, 2021

Tonight's picture was taken on October 30, 2008. Mattie was released from the hospital for Halloween. However, Mattie did celebrate the holiday twice... once at the hospital and then trick or treating in Alexandria with his friend, Zachary! Mattie visited the child life playroom the day before Halloween to participate in some decorating. I always can tell whether Mattie was inpatient or outpatient based on what he was wearing. If he was in the hospital, he wanted to wear ONLY pajamas.  

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

• Number of people diagnosed with virus: 45,041,011
• Number of people who died from the virus: 726,097

It's been quite the day. It started with me taking Sunny for his surgery follow-up. After two years of working with this vet, I had the opportunity to actually meet her today. She came out to the car, which was nice, because of COVID, I never met her. I only know her by voice. She thinks that Sunny is recovering but he is still quite restricted in movement for another month. As it takes two months for the bone to grow and heal. 

I have been working on a two series of photos for Peter's office. He is constantly on video conference calls, and people are asking him..... where are your photos? Right now his walls are bare. 

So on one wall, I am doing a photo series of animals. Keep in mind that all of these photos Peter or I have personally taken. 

These are capuchin monkeys in Gibraltar. 

This ostrich was on a farm in Aruba. 

The second series of photographs are places we have been together. For example this is a photo Peter took of the inside of the Coliseum in Rome. 

This is a photo of Nubble Light in York, Maine. There will be 20 photos of places and 9 photos of animals. When we get them on the walls, I will post some photographs. 

Later today I got a phone call from my mom. Originally we have been preparing for them to move in March of 2022. However, for the last week the timeline has moved up. I thought it was January, but today I was on the phone with my parents and the movers and I learned that with the mass exodus of people from Los Angeles, it is very very hard to schedule movers. So you basically have to work around their schedule and get on the books ASAP. Therefore, it appears that we are moving my parents here on December 6th. I was planning to go to Los Angeles on November 18, and now I will be staying there through the move. This leaves me scrambling to get things ready in the house (things that I wasn't even focused on because I thought I had more time) and also figure out just how I will get things done for the Foundation in my absence.

Sunday, October 17, 2021

Sunday, October 17, 2021

Tonight's picture was taken on October 10, 2008. I can tell exactly what was happening here because Mattie was sitting on a gurney. This meant that he had a scan that day and the sedation team was preparing him for radiology. Because Mattie had his initial MRIs during diagnosis without any preparation, he developed intense fear and anxiety about even being in the same room as the scanning machine. Therefore, all subsequent scans had to be performed under sedation. That may sound easy enough, but it was anything but easy. With sedation, you have to be without food and water for 12 hours and after the scan was over, Mattie's recovery from the sedation was difficult. He dealt with uncontrollable agitated, which meant he needed a drug to counteract the sedation. If Mattie had been introduced to a child life specialist right from the beginning, his initial scanning experiences may have been more positive which could have potentially avoided his need for sedation. 

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

• Number of people diagnosed with the virus: 44,927,783
• Number of people who died from the virus: 724,177

It hasn't been a good weekend for Peter, ever since he received the flu shot. The irony is I typically get flu like symptoms from the vaccine and Peter is fine. Not this time around. When feeling like this, it is hard to know what to eat. I know this feeling well, so I went to the grocery store today and bought all the ingredients to make homemade chicken soup. 

Meanwhile, as of today, all the walls in the garage have been painted. I will paint the staircase, from the garage into the house, sometime this week. It is a thrill to have this big chore behind us!