Saturday, November 6, 2021

Saturday, November 6, 2021

Tonight's picture was taken in November of 2007. That weekend, like so many weekends, we took Mattie to Roosevelt Island. Which was a five minute drive from where we lived in DC. It was a little slice of peacefulness, located steps from the city. Mattie loved the Island, walking the trails, climbing rocks, steering remote controlled boats in the water, and of course collecting rocks, leaves, and sticks. We had quite a collection at home. I miss being able to take Sunny to Roosevelt Island now. The Island was a God sent to us during COVID. I remember when Peter was without work and he was looking intensely for a job, we would walk the Island with Sunny for a mental health break. I miss many aspects of our former life, and being in the city. 

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

• Number of people diagnosed with the virus: 46,458,256
• Number of people who died from the virus: 754,215

Peter and I hung curtains in his office today and we did a ton of other chores. I have been on my feet all day, that my back, feet, and hips hurt. 

A surprise came in the mail today! Our Virginia license plates. I am ABSOLUTELY STUNNED. We went to the DMV on October 27, a little more than a week ago. In that time, the DMV sent us our licenses, the disabled placard for my dad, and now our car tags! Peter and I have no words for this experience, because getting any of these things done in DC was always a nightmare. In addition to a nightmare, we never got anything on time. Also DC won't mail you your car license plates, you have to go into the DMV (and ONLY in one location) to pick them up. Not user friendly whatsoever. 

Though we wanted a Mattie plate in Virginia, the name was already taken. Which is why we went with MMCF, for the Foundation. Here's the irony in all of this. After Mattie died, we got a vanity plate in DC that said... MMCF. However, over time, we got rid of one of our cars, and therefore the MMCF plate became inactive. We we kept the plates however. In 2016, when I got my new car, I wanted the MMCF plate put back on the car. The DC DMV told us that MMCF was already taken and therefore they couldn't assign us this tag. We told them it was assigned to us and we still have the old plate. They only needed to look it up in the system, which they wouldn't. Honestly they could have cared less and refused to reactivate our old license plate. So instead, we created a new vanity plate with Mattie on it. I say this is all ironic, because now we have come full circle, and are back to having MMCF on our car.

Friday, November 5, 2021

Friday, November 5, 2021

Tonight's picture was taken on October 20, 2008, in the pre-opt area. It was an ungodly hour of the morning as we were waiting to talk with the pediatric anesthesiologist  and Mattie's surgeon. Mattie was heading into his first limb salvaging surgery and despite the severity of what was about to happen, we tried to make Mattie laugh and help him understand that we were with him every step of the way. My joke was he was going to become the bionic boy! He liked that notion. But given all that Mattie was facing, wasn't it amazing that he was able to smile? If I were in his shoes, there would be NO SMILING whatsoever. 

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

• Number of people diagnosed with the virus: 46,424,240
• Number of people who died from the virus: 753,738

This picture isn't the best, as I literally snapped a photo from my computer. This is one of the signs that is going on our new Snack and Item Cart at the National Institutes of Health (NIH). The Cart is in transit to NIH now and our magnetic signs that go on the Cart have already arrived there. 

Given that I am leaving to go to Los Angeles on November 18th, I am working around the clock on house stuff and Foundation things. I want the countless items that our in our home, to be out of it, because I will have another set of movers and things coming at me in December. It is like moving twice in a way, and once was more than enough for me. 

It has been one thing after the other here. We haven't had a peaceful moment in this house. Today while I was walking Sunny, one of my neighbors said I should sue the former owners. He has been watching the extensive work we have been doing on the house. Not just things we elected to do, but things that had to be done for the safety and wellbeing of the house. Things we had no idea we were signing up for before we purchased the house. All I know is my life feels like one chore after the other. I realize life can be like this in general, and I remember those moments in the hospital with Mattie, when I wished for the mundane daily tasks. I can certainly put the stress we are under now into context, but nonetheless, I am tired and there is no end in sight. 

 
I have decided that next week I will begin candy/item deliveries. In addition there are two community groups collecting items for me. I have told both of them that I want all items by Friday, as I do not have time for items to continue to come in after that. Despite the fact that we live in a bigger space now, there really isn't a house big enough to manage our item drives. They take on a life of their own. Part of me preferred the live item drives. Certainly it was MORE work and we gathered much more candy than I knew what to do with, but it was a social experience. It gave me time to interact with our supporters, we united to sort candy, and in the process I was able to spread our psychosocial message. Doing things virtually changes that hands on feeling. 

But we move on and forward. I am deeply grateful that supporters took the time to order items from our Wish List, and I will take it one day at a time, as I process the items and deliver them all over the region. 

Thursday, November 4, 2021

Thursday, November 4, 2021

Tonight's picture was taken in October of 2008. Mattie was home recovering from his first limb salvaging surgery. As you can see his right arm was wrapped and in a sling. The first surgery was overwhelming and soon thereafter Mattie showed signs of medical traumatic stress. Mattie loved pumpkins and despite going through cancer, we felt it was important for him to be surrounded by all the things he loved. Though Mattie wasn't in a wheelchair at that point, we were preparing for this change and Peter built a ramp onto our deck. I have NO IDEA how Peter found the time or the energy to do this, but frankly when living through a crisis, your body goes into overdrive and you can accomplish tasks and things you never thought possible. 

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

• Number of people diagnosed with the virus: 46,319,558
• Number of people who died from the virus: 751,305

Today was an absolutely exhausting day. I drove to Mattie's school because they are doing a candy collection for us. Typically by this time of year I wouldn't want more candy, but unlike in years past, I need candy this year. People are donating more snacks than candy. Of course both are needed, but I was happy today to pick up a whole trunk full of unopened vacuum sealed candy. One thing I have quickly deduced.... it is a lot easier for people to donate loose candy. Which explains why we used to get TONS of candy donated. I assure you that amount of candy was totally overwhelming to manage, sort, and most of all move to deliver. 

What you may not know is where we moved to, puts me further away from Mattie's school. What once was a 15 minute commute is now 40 minutes each way!

Before heading home, I drove to the Whole Foods near our house. I wanted to pick up a few things. I rarely go to Whole Foods, so today was more of an exception. In any case, while walking up and down the aisles, I met a French chef. We got to talking and you aren't going to believe this, but he went out to his car and gave me a chocolate mousse that he just made. He left the restaurant industry and now does private catering. He gave me his business card and ironically I ate at his former restaurant, Le Refuge in Alexandria MANY times over the years. Here is some info on who I met today:  https://alextimes.com/2008/05/newsmakers-chef-lelan-freelance-chef-brings-french/

At 3pm, a teacher from the Nativity School in Burke, VA came to our home to deliver items. This month's virtue that the School is focused on is fortitude. The kids decided that Mattie Miracle met this virtue, as our items give children with cancer and their families fortitude to cope and carry on. I found this story very touching and I have asked the teacher to help me recreate it for a newsletter. 

The school donated items to help us start up our new cart at the National Institutes of Health. Their generosity is just incredible. 

I spent several hours digging out of the bags you saw above in my garage. This photo is what came out of the bags! Totally impressive, no?

What is stacked in my kitchen is separate from what's stacked in this room. Needless to say, I have snacks for hundreds of people! The generosity of Mattie Miracle supporters never ceases to amaze me. 

Wednesday, November 3, 2021

Wednesday, November 3, 2021

Tonight's picture was taken on Halloween of 2008. Mattie went over to his friend, Zachary's house to trick or treat. Though other kids came along with them, Zachary was an outstanding friend to Mattie. The other kids felt Mattie was too slow (as he was recovering from limb salvaging surgery) and they wanted to dump him. They were encouraging Zachary to leave Mattie behind. He never did! Instead the others moved along, and Mattie and Zachary went on their own. It was a real amazing lesson on the importance of friendship. These two were inseparable, starting on the first day of preschool together. As for collecting candy, Mattie did it, but he did not like eating it. What he enjoyed doing was sorting it, but he had no problem sharing his candy with others because it did not mean much to him. On this we differed greatly!

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

• Number of people diagnosed with the virus: 46,233,867
• Number of people who died from the virus: 750,056

Last night, Peter had me go out to the patio because he wanted me to hear something. What I heard is totally hard to describe but VERY scary. Especially if you don't know what you are listening to! What was the sound? Foxes screaming! It honestly sounds like someone is either being murdered or a prehistoric bird is being killed. Either case, if you haven't heard what I am talking about, I included a short YouTube video so you could relate to what I am writing about. 

Foxes are everywhere! Even by day. While walking Sunny, look who was out and about. From a distance they look like a dog, however, it doesn't take long to know this is no one's pet. I have seen many foxes camping out in people's front yards and they are quite used to humans. It is a big adjustment for this city girl. 

Meanwhile, we had the plumbers back over today to replace the vanity in the bathroom my mom will be using. This is the ONLY room in the house that we did not paint. Which explains the horrible wall and ceiling color. My intention was to renovate this bathroom before my parents moved in. But the expenditures to deal with all the infrastructure issues have been over the top. So the bathroom is on hold. Now I wish I had the painters take care of this room when they were here in the summer. I will see how much energy I have before I have to go to Los Angeles. As I may paint it myself. In any case, this is the second vanity I bought for this bathroom. The first one did not fit correctly. Apparently the second one is a charm. My biggest fear was that there was going to be no tile under the sink when the old one was removed. Fortunately there was tile, making this install much easier. This bathroom is original to when the house was built in 1996. I think the only update the former owner did was select this nightmare paint color. 

Tuesday, November 2, 2021

Tuesday, November 2, 2021 -- Mattie died 631 weeks ago today.

Tonight's picture was taken on Halloween of 2008. We were on our way to the hospital's Halloween party. Mattie wanted me to dress up too, so the easiest thing for me to be was a black cat. I remember this moment in time like it were yesterday. Another thing I remember so distinctly was the amount of clutter we accumulated during Mattie's cancer journey. It was just too much to keep up with, but you would be surprised how things can pile up after 14 months of neglect. It was so overwhelming after Mattie died that I left the piles just as they were for many years. 

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

• Number of people diagnosed with the virus: 46,140,509
• Number of people who died from the virus: 748,173

I woke up this morning and opened the blinds. Look who was staring right at me. Yes a deer!

The deer spent some time on the front lawn and then decided to head over to my neighbors. 

Today we had someone over to clean two of the house's chandeliers. I would clean them myself but they are close to 20 feet off the ground and I don't have a ladder to manage that height. One of the chandeliers was so dirty, she tells me it hadn't been cleaned in years. The total count of dead stink bugs and flies that came off the chandelier was 50!

You can see how high off the ground this is! So I am glad I did not take on that challenge. 

Meanwhile it was pouring today and felt raw in temperature. I packed Sunny up in the car and drove him 45 minutes to his physical therapy appointment. Today was aquatic therapy day. Not Sunny's favorite, but he is doing it! Check out this video! Keep in mind that to motivate him they give him lots of treats! 

I am showing you this photo because it is a warning if you have a cat! These cute little cat litter cabinets are all the rage now. So I got one for our laundry room. I figured it would hide the box and therefore it wouldn't stand out as much. WRONG, WRONG, WRONG. If you have a cat and are thinking of buying one, don't! 

Part of the problem is its dimensions. It is hard to find a cat litter pan that fits the space. So the pan is smaller than the box. Needless to say, cat urine goes over the sides, all over the interior of the box, and even worse it flows out of the box onto the floor. Anyone who knows anything about cats knows that cat urine is vile. It is hard to clean up and the smell is sickening. I have been cleaning it for days. I had just about enough of this, so I cleaned it and advertised it for FREE on Next Door. Someone is taking it off my hands tomorrow. I hope she has better luck with it. So I am back to the less visually appealing cat litter box, but at least it contains what it is supposed to. I have little time to waste, and cleaning up cat urine truly has made this week over the top and it is only Tuesday. 

Monday, November 1, 2021

Monday, November 1, 2021

Tonight's picture was taken on Halloween of 2008. Mattie had two trick or treating opportunities that year. One at the hospital and the other with his friend in Alexandria, VA. Mattie was very strategic about his costume that year. He was still recovering from limb salvaging surgery on his right arm. It was wrapped in a cast and he moved gingerly because of this. Mattie was also very cognizant that he was different from his peers. So when his art therapists and child life specialist allowed him into the clinic room to pick a costume without other patients around, he loved it. He honed into this costume because he felt it would cover his arm and bald head and that others would not realize he was sick. 

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

• Number of people diagnosed with the virus: 46,071,178
• Number of people who died from the virus: 746,818

I got up at 6am today because I had a lot I wanted to do. Somehow no matter what time I get up, I am always scrambling to get things done. We had the HVAC person over today to help me diagnosis the mysterious smell. He went in the attic, we looked at all the vents, and he even had me go up to the attic to smell it myself. It smelled fine. So now we have deduced it isn't coming from the air vents. The drains have been cleaned, so it isn't from the drains. The HVAC person said it has to be something in the room. The only two new things in the room are Indie's cat tree and a rug I bought for Peter's office. We are taking each out separately to see if it makes a difference. If it truly is something I bought that has this smells, I am going to be livid. Though I suppose it is better than a systemic house issue. Either case, I have been at it with this smell for weeks!

In addition to the HVAC person we had the fence guy over to measure again. Another headache which we did not need. Of course we are still getting around the clock Amazon deliveries for our item drive. I am being proactive and have scheduled item drop offs at Children's Hospital at Sinai in Baltimore and at NIH in Rockville, MD. I would like to get as much done before I have to leave for Los Angeles on November 18. Of course once I do the LA move and help my parents transition here, I won't want to deal with the candy and item drive boxes. Not to mention that the boxes are practically taking up an entire room in our home. 

Also on my list today was to run to our Foundation's post office in Arlington to check the mail and to pick up all the stamps we need for our December mail mailing. Certainly I could get this at any post office, but Darryle at the Shirlington Post Office takes good care of Mattie Miracle and he has been helping me with our mass mailing for over a decade now! Darryle knows what I need and he gets the job done right! People like Darryle are worth the extra trip, and I am thankful to have his help. If I could only clone him!

Sunday, October 31, 2021

Sunday, October 31, 2021

Tonight's picture was taken on Halloween of 2007. Mattie was five years old. That year he wanted to be an Air Force pilot. However, when we went to look for costumes the only one I could find was that of a Navy pilot. So my friend who is a retired lieutenant in the Air Force sent us Air Force patches to attach to the costume. Mattie absolutely LOVED that! Then our neighbors gave Mattie the hat. So it was quite the ensemble, which seemed fitting since this was his first store bought costume. Previous years, I either made the costume or Mattie wore some sort of sweatsuit material. 

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

• Number of people diagnosed with the virus: 45,967,708
• Number of people who died from the virus: 745,805

It was a very busy day for us. Notice in the photo above the big blow up pumpkin, that we are missing a shutter. It fell off in a wind storm! Wonderful. So today, Peter got up on a ladder and reattached the shutter. I wish I could say that was the end of our day. Unfortunately no! We worked the entire day doing all sorts of chores. In addition to everything else, I am trying to get the house ready for my parents to live in. So the beds we have in our lower level bedroom, which is the guest room, we had to disassemble and bring to the master bedroom for my parents. After all for a good week they won't have access to their things, while the truck is in transit. I am working on trying to get their bathrooms, closets, and things ready for them. That's on top of other issues here that we are still managing. 

Being that it is Halloween, I tried to estimate how much candy we would need. Frankly I have no idea given that we are new to the neighborhood. The HOA of the neighborhood sent out an email saying there would be a Halloween parade at 5pm and that neighbors should line the street and give out candy to kids in the parade. So sure enough Peter, Sunny, and I were outside with candy. But there was NO parade. I am not flexible about this kind of stuff. If you tell me to be somewhere and to participate, I expect there to be something to participate in! At 5:15pm, we then walked to a cul de sac in the neighborhood where a pizza party was going to take place before trick or treating. Again, we went because we wanted to be social. What a mistake that was, and I won't be going again. 

The number one question asked of us is.... do you have children. In fact, if one more person asked me that, I thought I was going to explode. Then we got stuck talking to quite a couple. This couple recently sold their house and they are relocating south to be near their daughter who just had a baby. Their other daughter is training to be a pediatrician. The couple was giving me a lecture on how tired they are (as they are moving, one daughter got married, and the other is having a baby) and also how special their daughter (studying to be a physician) is because she is COMPETENT. He said that is the best quality a doctor can have. Now perhaps if you are talking to someone inexperienced with the medical field, I would have just smiled and said.... OH YES or absolutely! But you are talking to ME! I couldn't take it and therefore let him have it. I said most physicians are competent. It is the physician who can listen, include the patient and family as part of the treatment team, and also have the compassion to understand that illness is much more than just about solutions... that's what makes a physician stand out from others. 

They then asked about us. Mind you, we don't go looking to talk about our situation. Peter told them about Mattie, the Foundation, and the fact that we bought a house with a lot of problems and now I am headed to Los Angeles to pack my parents up and move them in. So I have TWO moves in one and my dad is not an easy patient. As he has physical issues but they are nothing in comparison to his late stage dementia. After I finished with this couple, they said... WOW! That they have nothing to be tired about. CORRECT. Really had it with them. 

Peter and I came back home dejected and deflated from this pizza party and neither one of us wanted to hand out candy. So like many of our neighbors, we put an outdoor table at the end of the driveway and put a big box filled with candy for kids to take!

I snapped this photo while walking Sunny today. There were two tombstones in someone's front yard. On them read..

Chris P. Bacon

RIP M.T. Grave

Someone has a sense of humor!