Saturday, October 16, 2021

Saturday, October 16, 2021

Tonight's picture was taken in October of 2008. Mattie received this incredible gift from Jerry and Nancy, the hospital's music volunteers. Mattie had a special relationship with this duo and because they knew Mattie loved and responded to music, they got him his own keyboard. Mattie loved it throughout his cancer journey. After Mattie died, we donated the keyboard to the hospital for other children to have the same enjoyment as Mattie. Musical distractions were gifts when trapped inside a small hospital room.  

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

• Number of people diagnosed with the virus: 44,910,637
• Number of people who died from the virus: 724,127

Two weeks ago I received an email from a woman. She was looking for volunteer opportunities for her niece. It turns out that her niece lost her sister to osteosarcoma three years ago and as a result no longer lives with her parents. Mainly because the death of one of their children caused them to divorce and they are both facing many health issues. Which is why the aunt has stepped in to help raise her niece. An amazing woman. Today I had a zoom call with her niece and had the opportunity to talk to her about Mattie Miracle and how she and her school could potentially get involved in our work. I asked her how to engage and capture the attention of students her age regarding childhood cancer. Her answer was honest and I think quite accurate.... they need to have some sort of personal connection with the disease. She says her friends are aware and interested in supporting the cause because they know what she has faced with her sister. Given all this young person has faced, I was very impressed with her ability to talk about difficult issues and her desire to want to help and make a difference in the lives of other families like her own. 

For the rest of the day, Peter and I painted the garage. This wasn't top on our list, but because of all the electrical panel work that was done, which landed up happening in the garage, we had no other choice but to paint. 

That said, look at the original color of the garage. Trust me the color is hideous. The kind of color that makes you look ill, even in the sunshine. 

Of course if we were outside, Sunny wanted to be with us. Limp and all! 

It's beginning to look cleaner and brighter!

You have to be Houdini to reach the very top of the walls. We have ladders, but they did not help. So I had Peter attach a paint brush to the end of a long stick, and that is how I painted the edge between the wall and ceiling. At first I was going to have our painters tackle the garage, but they were honest with us. They said it was going to be costly and it was only a garage. All true, which is why we are only painting the walls ourselves. 

Friday, October 15, 2021

Friday, October 15, 2021

Tonight's picture was taken in October of 2008. That afternoon my parents and I took Mattie out to lunch. He was home between treatments and since it was early on in his treatment, Mattie still had energy, some immunity, and the ability to function independently. As you can see Mattie was decked out for Halloween and I also brought along all sorts of holiday themed toys.   

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

• Number of people diagnosed with the virus: 44,834,986
• Number of people who died from the virus: 723,242

Yesterday we both got the flu shot. I seem to be okay and Peter is more affected. But then again, we are living with a lot of stress each day, so it is hard to know if Peter is feeling the long-term stress or just side effects from the flu shot. 

I feel like I live in a fish bowl. We have been having work done inside and outside. There is NO escaping, no place where you can find peace, and poor Peter was jumping from one room to the next to find privacy for his conference calls. It is 5pm, and this is the FIRST time I have sat down all day. Because of the hectic pace, we are not eating right, and I am not keeping up my fluid intake. Which has painful consequences for me. So on top of everything else, I am feeling miserable and trying to re-hydrate. 

The saga of the bathroom smell continues. Today a team of plumbers came and literally cleaned out the entire shower drain. They did a great job. Now the shower drain doesn't smell, but unfortunately the smell continues. My plumber started looking under the sink and found a leak. So next week he will fix that, but I still can't pinpoint where the smell is coming from, and if there was a leak, has mold growing behind the sink vanity? I don't know, but there is never a dull minute here. If I listed all the things we have done to this house since we have bought it, you wouldn't believe it! I am beginning to think I could have built a house from the ground up and it would have been cheaper!

Meanwhile, I walked Sunny today and while walking, a car pulled up next to me. It was a woman who wanted me to know that she sees me walking Sunny everyday and is impressed with my patience. It isn't easy walking a dog in a sling, and it turns out she is a dog lover and has rescued and fostered many dogs. Needless to say I always find it interesting who is watching and wants to comment. This has happened to me many times while cruising with my dad. People apparently notice! I am minding my own business and not looking for commentary, but it is always nice whenever you receive positive feedback. Especially feedback as it relates to providing care.

Thursday, October 14, 2021

Thursday, October 14, 2021

Tonight's picture was taken in October of 2008. As you can see Mattie was in the Halloween spirit. In addition, you can probably see stuff piling up all around our walls. The amount of items coming into our home while Mattie was ill was beyond overwhelming. However, given I was managing Mattie's care and needs, I had no time to sort through things, organize them, and so forth. This witch's hat was given to us years before by our neighbor. Mattie liked my neighbor's hat so much that she gave it to him. 

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

• Number of people diagnosed with the virus: 44,748,141
• Number of people who died from the virus: 720,910

The smell coming from the shower drain is making me sick. I spent a good portion of the morning trying to track down someone who could help us with this problem. Our plumber is coming back tomorrow and the septic people are telling us that it sounds like a pipe issue and not a septic one. We shall see. 

In the mean time, I tried a home remedy of baking soda, white vinegar, and boiling water. It definitely helps with the smell, but the problem remains. 

Mid-day, I took Sunny out for a walk. He is definitely walking on all fours now, slowly, and with support, but he is doing it! Along our journey we found this cute turtle just hanging out in our neighbors yard. 

A close up! Nature is all around us here, but a turtle is a first for me. 

Later in the day, I drove to Mattie's school for a meeting. The school's community service coordinator wanted to meet with me to discuss the school's connection with Mattie Miracle and ways for students to get further involved. 

What I found fascinating is that in the service learning contact that students have with a community group/organization, it specifically says that the student can't obtain hours through administrative or clerical type work. This statement did not sit well with me, mainly because I can't think of any job out there in the real world that doesn't involve having to do some admin and clerical work. It is part of a professional's daily routine and I think an important task that students need to be educated and trained to do right from the beginning. Service learning should have a hands on component, certainly, but I think we are doing students a disservice by sugar coating the reality of work/a profession. Especially since the school is interested in cultivating students' interest in entrepreneurism and non-profit work. In many ways, I feel like I run a non-profit but also I am an entrepreneur. As with the inception of the Foundation, we incurred many personal (and still do) financial obligations and risks. 

Running a Foundation involves a great deal of administrative and organizational skills, skills I think are worth understanding, learning, and having an opportunity to practice. Yet this type of grunt work, I am sure is not attractive to the average teenager. In fact, as I told the school today, the teen age group is not my favorite to work with, mainly because it is hard to capture their interest, attention, and focus. They are pulled in so many directions with school demands, not to mention social media, and frankly developmentally they are in a place that typically revolves around through own self identity and needs. So in essence NOT a good match with service learning. 

There is also the debate of whether mandating service learning is a good way to inspire service. When did service learning become part of a high school curriculum? It certainly wasn't when I went to high school, and yet guess what?..... I did a lot of community service as a teenager. I did not get credit for it, and it did not impact my grades. I understand why schools try to integrate this into curriculum, but at the end of the day, I do think the service learning experience becomes an after thought. Or just something one has to complete in order to graduate. So despite good intentions, I don't think the requirement actually inspires one to be more community minded, giving, and to volunteer. Which makes sense, because how many of us enjoy something or are passionate about something we are required to do?  

Wednesday, October 13, 2021

Wednesday, October 13, 2021

Tonight's picture was taken in October of 2008. Students of mine created this wonderful Halloween basket for Mattie. Mattie had a mixed reaction to this gift. His first reaction was great sadness and tears, as I think the basket reminded him that he had cancer, was in the hospital, and that his life looked very different from his friends. After going through all those emotions, Mattie then started playing with the basket. Which is the photo I captured here! I also notice the big blue chair in the background. That was the chair I slept in most nights when Mattie was hospitalized. It doesn't bring back happy memories seeing it. 

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

• Number of people diagnosed with the virus: 44,643,913
• Number of people who died from the virus: 718,115

It was another fun day on the farm. We still have a team of people here working on weeding, cutting dead limbs, and shaping shrubs and bushes. The clean up here is intense. So far they have carted away four trucks worth of debris. That is how overgrown and unkept things were. Perhaps it is a look, but when weeds are strangling out actual plants, I have an issue.

This morning, I took Sunny on a walk. When I tell you that three foxes passed us, I am NOT kidding you. 

Do you see this one brazen fox? He was sitting on someone's front lawn and remained there despite our presence. At one point, the fox just sat on the lawn, basking in the sunshine, as if he lived in this house. 
Our newest issue is a horrible smell coming from a shower drain. Whatever the plumber did yesterday did not rectify the situation. So I am trying to analyze this from all angles. Given the lack of care this house received from the former owners, I am now worried about the house's septic system. Though we would have preferred to be on a public sewer system, this isn't how it works once you move outside the beltway of Washington, DC. In fact, I am learning that the majority of the US is on septic versus a public system. In any case, I am nowt trying to get a reputable company here to do a septic inspection and to help pin point this smell. All I know is the smell is subtly intense, if that is even an accurate description. I notice it and it bothers me and I also feel this can't be healthy especially for Peter who works near this bathroom all day. 

Days here are just not peaceful. I jump from one chore to the other, and I feel unable to settle into a routine, much less find time to focus on work. My form of therapy is two fold... chocolate and crafts! Not necessarily together, but you get the idea. 

There is this tiny ledge over the front door. I feel this makes the perfect place to do seasonally themed displays. So today I worked on this. I got battery powered candles that have a remote control to them. So with the remote I can switch on the candles and they have a nice twinkle in the evening. 

A close up!

Tuesday, October 12, 2021

Tuesday, October 12, 2021 -- Mattie died 628 weeks ago today.

Tonight's picture was taken in October of 2008. Mattie was home between hospital treatments and though we were not able to go to any public fall festivals given Mattie's immuno-compromised state, we did buy him several pumpkins. Mattie loved everything pumpkin. Including eating pumpkin cookies, muffins, and bread! In fact, prior to Mattie, I really did not like the taste of pumpkin. Mattie changed that for me, and now I love it just like him. 

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

• Number of people diagnosed with the virus: 44,541,990
• Number of people who died from the virus: 716,191

Every so often, I drive back into the city to get my nails done. I have been going to the same person since 2009, the year Mattie died. Since I see her often, I know all about her family, as she knows about Mattie and my family. In fact, her sister was my hairstylist (before she retired), and I started going to her for hair cuts at age 27. That is how far back we go. 

Going into town gives me the opportunity to drive through my old neighborhood and also stop for lunch at my favorite sandwich/salad place near Mattie's hospital. While walking through the streets of Georgetown today, I absolutely LOVED how people were decorating for Fall. This door step caught my attention. 

What is Peter holding up!? Try a huge wad of hair! This nightmare was stuck in the shower drain. Our plumber fished it out today. He tells me that this is what was causing the smell in the bathroom. I literally thought it was sewer gas from the toilet, that is how bad the smell was. He has now cleaned out the pipe and put enzymes in it to break up anything else and help with the smell. We shall see, oh and by the way in addition to this wad of hair there were also Starbuck's straws in the drain. Do people really drink things while showering??? I am perplexed.

Yesterday I bought these items at the craft store. 

Today I used a wire cutter and a hot glue gun and assembled this fall wreath for our front door. 

I typically do this type of creativity project for other people. But I wanted fall colors on the door and I debated whether to buy a pre-made wreath or make one. I elected to make one. That way it is unique. It maybe hard to see but there are pinecones and small pumpkin-like ornaments hot glued to the wreath. How did I learn to use a hot glue gun? From Mattie! He learned to use one in preschool and he wanted one for home. He showed me how to use it and I have been using one ever since! 

Monday, October 11, 2021

Monday, October 11, 2021

Tonight's picture was taken in October of 2008. Mattie was in the outpatient clinic at the hospital and doing what you loved best.... creating! He was at the art table and for weeks he was working on transforming a regular cardboard box into a haunted house. With the help of his art therapists, he created ghosts and this amazing witch. However the creativity did not end there. In fact, inside the house was decorated too and ghosts were on a pulley system, so they could fly throughout the house. The beauty of Mattie Brown. 

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

• Number of people diagnosed with the virus: 44,424,048
• Number of people who died from the virus: 713,902

I made the mistake of sleeping until 8am today. Given how I have been feeling, I needed the rest. But there is NO PEACE here. Don't you know it that before 8am, a landscaping team help us with weeds, trimming trees and bushes was outside our door. You honestly never know who is going to show up unannounced, which is why when Peter is on travel, I get up at 6am, so I am ready for whomever shows up. 

I wish I could say that I feel 100% better! I don't! In fact the doctor herself said it will take weeks for Fosamax to get out of my system. I was happy to hear her acknowledge that for me this medication is "poison" (her own words). I couldn't agree more. For a SMALL percentage of people, Fosamax can burn one's esophagus. All I know is nothing goes down, including liquid, without generating an intense heartburn. That alone is sickening, and in turn eating isn't appealing. 

I would say that Fall is a tough season for us. It reminds of students returning to school and of course Mattie's death. I think so much in our life is changing now all at once that we are facing many big adjustments. Think about all the big life changers we are facing..... moving, buying a new house, remodeling, starting a new job, Sunny's orthopedic surgery, and moving my parents across country to live with us. 

Today was just not a happy day. I feel tied to this house, doing constant chores, and in the process never getting anything done. By 4pm, I had enough and I drove to the crafts store. I want a Fall themed wreath for our door, and I figure why not make one. Never made one before, so we shall see how it goes. If and when I finish it, I will snap a photo. 

Sunday, October 10, 2021

Sunday, October 10, 2021

Tonight's picture was taken in October of 2008. Mattie went to visit his friend Campbell that day. Campbell was a close friend from kindergarten. I loved watching them play, because it always involved great dialogue and creativity. As you can see they both were taking a break for a Halloween themed cookie treat. 

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

• Number of people diagnosed with the virus: 44,334,811
• Number of people who died from the virus: 713,018

I am slowly coming out of the Fosamax frenzy. Today I am dealing with a low grade fever and occasional abdominal pains. The pains are intense, but nothing like yesterday. Even the achiness is better, but then again, I am on around the clock Advil and Tylenol. Which helps a lot. 

I was able to do some things around the house today. One of the things we focused on were boxes and things still piled up in the basement. 

Though I saw the items Mattie's school gave me in the spring, Peter actually got the chance to look at them today. Mattie's school gave us a high school diploma for Mattie and they included his name on the list of graduates. They certainly did not have to do these things, but it is nice that he is remembered in this way. Peter then went through the class yearbook. I have to admit that I did not do this for many reasons. We got to see many of the senior year photos of Mattie's friends and classmates. 

I have to say that it was a surreal experience to see children who I knew at age 6 and 7, now as young adults. For me Mattie is forever 7, and therefore in my mind so are his friends. Yet the reality of the yearbook was jarring because it confirmed what it hard to accept.... that Mattie is gone, while the other children have grown, matured, and are thriving and going to college. Naturally I wouldn't have it any other way for Mattie's classmates, but nonetheless, the yearbook is a painful and very visual reminder. Peter wanted me to throw the yearbook out. I haven't, because perhaps at a later date I will actually be able to look at it. Today was NOT that day. But I get Peter's sentiments wholeheartedly. 

Obviously unlike the other students who graduated in 2020, Mattie did not have a page devoted to himself. Actually there was no mention of Mattie in the yearbook. Again, I understand why, and it is not a fault of the School's, but the nature of the death of a classmate. In retrospect, I should have contacted the School and had a page about Mattie Miracle inserted into the yearbook. A page that could have been dedicated to the memory of Mattie, their classmate. Mattie wasn't physically there graduating with them, but his spirit will always remain within that class.