Saturday, August 14, 2021

Saturday, August 14, 2021

Tonight's picture was taken in August of 2008. It was Mattie's first month in the hospital. That day, his friend Charlotte and her mom came to visit Mattie. They surprised him with this adorable bathrobe, personalized with his name on it. It was in his favorite color! While cleaning out my closets in preparation to move, don't you know.... I found this bathrobe. I contemplated donating it, but then decided that made no sense, because how many Mattie's are out there who would want this bathrobe? Needless to say this bathrobe is coming with me to the new house. 

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

• Number of people diagnosed with the virus: 36,623,835
• Number of people who died from the virus: 621,199

This morning I got up at 6:15am. I have been trying to find a groomer for Sunny near the house. Ideally I wanted a mobile grooming company, but the company I selected is in the process of getting a franchise in Oakton. Therefore, their Reston, VA counterpart agreed to groom Sunny, but we had to take him to their facility. So we met the groomer at 8am. This is now a photo of CLEAN Sunny. Before COVID, I used to groom Sunny monthly. Then with the pandemic, Sunny went months without getting bathed. His white paws and bib had turned yellow. They are now white again. 

I couldn't take it! Today I once again cleaned up plaster dust. This stuff is equivalent to pouring baby powder all over the floor. It gets into everything and all I can see are footprints of plaster dust on the driveway and on the WOODEN floors. I know my cleaning will last long, but it had to be done. 

Meanwhile this is the state of the laundry room. What I thought was going to be a simple electrical panel upgrade, has turned into a massive project. Walls are cut open, which revealed cut beams, not to mention electrical issues. The problems are so significant that the electrical boxes are now being relocated to the garage. 

How do you like this paint job!? This is what the former owner left us with! The laundry room has three colors.... gray, green, and white. Also the tile floor in the laundry room did not go up to the wall. So you can see two different tile types! Get what I am dealing with here?

I wish I could say that the new electrical boxes are installed. Of course not, we are now at the mercy of the utility company who has to come out and work with our electricians. Who knows when that will happen. Meanwhile, I can't get the painters back to fix the laundry room and NOW garage until the electrical work is done. 

After spending time at the house, we came back to DC and we continued to clean out closets. In reality, cleaning out closets is like taking a trip down memory lane. For example, I found my doctoral graduation program, and Peter found a menu from his 36th birthday dinner! Mind you since Mattie died, I must say I have been good about cleaning out closets on a regular basis. So fortunately I am not contending with 26 years worth of collected items. Nonetheless it is still a lot of work and forces us to be disciplined about what we are going to keep, trash, or donate!

Friday, August 13, 2021

Friday, August 13, 2021

Tonight's picture was taken on August 6, 2008. Mattie was on a stretcher, being rolled to an MRI. In tow were Linda, his child life specialist, and Debbi, his sedation nurse. It was thanks to these two women that all subsequent scans were done sedated. Mattie's doctor did not believe me when I reported  how frightened he was going for a CT or MRI. So thankfully one day, Linda and Debbi got to observe Mattie trying to get a scan done without sedation. It was horrific to watch. Mattie was kicking, screaming, and crying. He even hid under the scan machine. Unfortunately radiology techs have NO patience and therefore we missed our allotted time to get the scan done. Of course any delays of any kind, prevent treatment from happening. So we really needed a more humane solution and thankfully Debbi had it for us. Scans during cancer treatment occur often, it isn't a one time deal, so Debbi became an important part of our treatment team. 

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

• Number of people diagnosed with the virus: 36,414,121
• Number of people who died from the virus: 619,809

Since April, I have had Friday conference calls with a research team I am working with in order to submit a government grant. The grant proposal is due on August 18th. For five months I have been part of the process of brainstorming ideas, to putting something on paper, inviting two other non-profits to join in our project, and seeing this 15 page proposal come to fruition. It is a remarkable team and I am honored they consider me part of the team. It is my hope that this innovative research project gets funded in order to help implement the Psychosocial Standards of Care into practice. The unique part of this grant is a couple of things.... it will be capturing the family voice as well as the voice of diverse family caregivers. 

Ironically I have worked with several members of this research team before, but to them I am just an advocate. Not that anything is wrong with that, but I do have skills. This project enables people to see that I do have a solid understanding of concepts, research, and writing. I think it is always interesting when people see you in another light. Which reminds me not to judge a book by its cover. 

I left Peter home today, given that he wasn't feeling well at all yesterday. He is slowly on the mend, but running to the house wouldn't have helped him. In addition, the electricians are still at the house and they shut the power all day. I worked at the house outside in 100 degree weather. After about four hours of that, I had to come home. Thank goodness we decided to upgrade the electricity, because in the process, we found out the entire house was poorly wired. Wired, NOT by an electrician! Wonderful, and the number one cause of a house fire. So we are fixing this issue and in the process, I need to get a structural engineer to evaluate a beam before the wall can be sealed by up. Things never end on the Farm!

Meanwhile, the stairs and banister received their first of three oil coats today. Can you already see that the stair stain color matches the stain in the living room!? It's a glorious sight, despite the fact that the stairs are oak and the living room is maple. 

Thursday, August 12, 2021

Thursday, August 12, 2021

Tonight's picture was taken in August of 2008. It was our first week in the hospital, awaiting Mattie's chemotherapy infusion. We were outside Mattie's hospital room, in the hallway of the pediatric intensive care unit. Mattie's child life specialist (Linda), who was getting to know us, decided to set up a painting project in the hallway, as Mattie's buddy, Charlotte, was going to visit him after school. Linda understood that she needed to plan an activity to bring Charlotte and Mattie together. It was a great idea because it was hard on Mattie's friends to visit a hospital and see a friend so ill. Throughout Mattie's treatment, Charlotte kept on visiting, despite the fact that most of Mattie's friends stopped coming. It speaks volumes to me about Charlotte's strength, courage, and friendship. 

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

• Number of people diagnosed with the virus: 36,249,006
• Number of people who died from the virus: 618,813

I set my alarm to get up by 7am. It never happened. Somehow in the middle of the night, I must have shut my alarm off. I woke up at 8:30am, and was scrambling to get ready to get on my conference call. Meanwhile, Peter hasn't been feeling well. He had whatever I had over the weekend. Except add to it nausea. Given my migraines, I am quite used to nausea, which is why I always travel around with zofran, an anti-nausea med. Needless to say, I am monitoring Peter and he is having forced rest this afternoon. 

My conference call was interesting today. Do you know when you expect to have one type of conversation, and then what actually happens is something else?! Well that was today's call, as the person I was talking to, invited me to co-write a book with her. Though I like the idea and I support the content that she wishes to cover, I feel like if I am going to devote time to write a book, it first and foremost must be Mattie's story. So given I am moving, I will be moving my parents in with us in 2022, and I am trying to run the Foundation and obtain a big government grant this year, I am hesitant to commit myself to any other project. 

It was another busy day at the Farm. We have HVAC over (as the system isn't working and it's like 100 degrees), electricians trying to install new electrical panels (and in the process found structural issues with the house.... NATURALLY), and the wood floor refinishers!

This is the original color of the oak stairs! It had a lot of yellow/tan to it. Given I have now stained the floors a combination of cherry mahogany and English chestnut, the stairs DON'T match.

Roberto and Jonathan have been fantastic to work with! They hand sanded the stairs and railing. They have been working very hard and after three days of sanding, they put the first coat of stain on today. 

The stairs now match the floors. When we bought the house NOTHING matched. Each room was painted a different color, and each room had different types of wood floors (oak, cherry, or maple). Therefore, the floors stuck out because different types of woods take on stain differently. You truly need someone who understands wood floors to be able to stain floors so that they look like they match. But the smells in the house are hard to take. Which is why I think this has contributed to how Peter is feeling. On top of the simple fact that we are working around the clock. It has caught up with us. 

Wednesday, August 11, 2021

Wednesday, August 11, 2021

Tonight's picture was taken in August of 2009. That evening, Mattie and his friend Abbie met up in the Lego store at the local mall. The special part about this was it was after hours and they were the only two kids in the store. The two fellows you see here are master Lego builders and they came to the store to meet Mattie and to build a project of his choosing with him. Since Mattie was a huge Lego fan, his child life specialist, arranged for this special evening. In a way it was like Mattie's last wish. It was a memorable evening. Mattie was happy and decided he wanted to build a NYC taxi from scratch. He did not want to use a Lego kit. Ironically that may have been because in treatment we completed every Lego kit that came out in 2008 and part of 2009. We took Mattie to New York City twice for experimental treatment and it was there that the YELLOW taxi caught his attention. To this day, we have Mattie's Lego yellow taxi in our living room. 

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

• Number of people diagnosed with the virus: 36,119,200
• Number of people who died from the virus: 618,585

Peter and Sunny went to the house today, and I stayed behind in DC. Peter was juggling work, the wood refinishers, the electrician, and the HVAC guy. Naturally more issues have been found and the electricians cut a huge hole in the wall between the garage and laundry room. When I tell you I just can't take one more issue, I am not kidding. 

My focus was on clothes closets today. But before dealing with that, I snapped some photos of the rooms in our townhouse. Peter and I personally hand painted every room in our home. We even installed the tile in the kitchen ourselves. We have been very hands on here and loved the space we were in. Peter even built the white cabinet that holds my platters and microwave. The kitchen has a very Mattie Miracle color palate.

All along the walls in our kitchen are hot plate tiles. Each place we visited, I brought back a souvenir tile. Our walls tell a story about the places we have been!

In addition to my tile collection, I always collect magnets. Magnets of places we have been. I have quite an extensive collection. 

My hot plate tiles!

The wall above our kitchen table features Mattie art. Everything, but the butterfly, was created by him!

Our open concept living and dining rooms. When Mattie was alive, these rooms were filled with toys, books, and all sorts of trains, cars, and gadgets. 

I call this "my room with a view." I absolutely LOVE the floor to ceiling windows. Not to mention the big oak tree outside the windows. Mattie and I used to pick oak leaves in the spring to feed to his tent moth caterpillars. Apparently oak was the only thing they liked eating. 

Our dining room! You can see Mattie's "Mr. Sun" painting. It is a huge piece, but it was the inspiration for the Foundation's logo. Our dining room set actually belonged to our neighbors. They moved about two years ago back to Ireland, and they sold me the entire set (with extra leaves) for $200. 

The paintings on the wall were done by Mattie. They were in abstract series!

I love this floating staircase. I think it was popular in the 70s, but apparently it is making a come back. In any case, the staircase wall features Mattie throughout the years.

You probably noticed that our walls have Tuscan toned colors, or in essence Mattie Miracle colors. Our hallway has a golden beige color and our living and dining room have a subtle Tuscan orange color. 

When we moved in the walls were an off white color. We kept them that way for a long time. After Mattie died, we painted the walls bright colors. We needed this for our own mental health. 

I receive this is not everyone's favorite color, but it is mine. I love that Victorian rose look. Our bedroom wall features many of the wonderful photos Peter has taken over the years. 

Our second floor hallway. 

A close up of one of my closets. What I am trying to show you are the shelves. Peter literally built in wooden shelves on the side for my sweaters and wired shelves up top for other things. Here's the irony of all of this, I think Mattie's room in our townhouse has better closets than the house we are moving to. I just loved the three closets I have been working out of for 26 years! 

In my closets, I still had Mattie clothes and shoes. Items that I just couldn't part with. Now 12 years later, I am able to donate even more shoes and clothes, because I realize these are only things, they aren't Mattie. Clearly those items that I truly associate with Mattie I kept. But others are getting donated. 

Mattie used to line all his shoes up on our staircase. Kind of like this! So in tribute to Mattie, I lined some of his shoes on the staircase that Peter built for Sunny. 

Mattie used to wear these shoes to kindergarten. 

Now this is a more complicated photo. These were Mattie's sandals. They were chewed up by JJ, our once resident Jack Russell Terrier. When Mattie died, JJ came into our apartment, walked up to Mattie's room, grabbed the sandals and took them back to his crate in my neighbor's townhouse. For years the sandals remained in JJ's crate, until one day, his owner gave them back to me. JJ missed Mattie, as they grew up together. Both JJ and our cat Patches showed me first hand that animals do indeed grieve. 

I had no idea that I kept Mattie's jacket, dress pants, and ties. Mattie needed these items for his school's chapel. Two times a year, the children had to dress up more formally for a special chapel. I will never forget learning about this in December of 2007. It was Mattie's first Christmas chapel at his school and I had NO IDEA that the children had to get dressed up. I recall two days before the event scrambling and running around to department stores finding Mattie appropriate clothes. I will never forget his cut snowflake tie for the winter and a red tie for the spring. 

In 2004, Mattie dressed up at Winnie the Pooh for Halloween. I will never forget this costume or how cute Mattie looked in it!

I also had two coats in my closet that belonged to me when I was 7 years old. My mom sent them to me years ago. I remember this red coat, as it was my favorite!

This was my Easter coat when I was 7 years old. 

In one of my closets I found this letter I had written to the band who played at our wedding. I actually sang a song to Peter at our wedding reception and this letter is informing the band on my choice and decision. It says:

Dear Maryann,

I have enclosed a copy of the music "my guy" with the lyrics that I plan to sing with it. I would like the band to do the back up parts. These part are underlined. I have also enclosed a print out of the lyrics without music. Please inform the band for me that this is a surprise for Peter, my fiancé. He has no idea that I am planning this. I would like to do this song right before it is time to cut the cake, if that is alright with the band. In addition, it is possible that a few of my friends might be doing back up as well behind me on the dance floor. Thank you for your assistance and have a great summer. 

Here are the lyrics I wrote to the song, "my guy:"

#1

Peter can you believe that finally today we're married

Just 6 years ago, would you have imagined we'd marry

When we first met at Union College we got to know each other and, we were goners

I just want to tell ya how happy I am that we're married

#2

Peter I decided it was finally my turn to surprise you

I knew you'd never suspect that I was planning to surprise you

But I felt it was important to express myself, and let everyone know that you're my true love

You best be believing that I am so happy we're married 

#3

As a couple who has travelled from Schenectady, New York and landed up living in Washington, DC, I must say that we have muddled through whatever life has, dished out and given, has in store for us.

#4

So Peter my dear this is just a little song to remind you

When things get tough you will always have me beside you

Our parents are examples that prove to us, that with work and understanding, love's forever.

I just want to tell ya how happy I am that we're married. 

This is the state of affairs in Mattie's room. I have bags to donate, piles to go through, and things to just trash. 

Tuesday, August 10, 2021

Tuesday, August 10, 2021 -- Mattie died 619 weeks ago today.

Tonight's picture was taken in August of 2009. We were home from the hospital, but that did not last long given the intense pain Mattie was experiencing. While home, Mattie requested to go camping in our living room. Peter got out the large tent, and put aero mattresses in the tent for Mattie and me. What you can't see was Mattie was hooked up to an IV and a pain pump. Once Mattie was diagnosed with cancer, one of us always slept with him. Most cases it was both Peter and me because there was no way we felt comfortable leaving Mattie on his own with that broviac catheter hanging from his chest. A catheter connected to the vein of the heart and used for the administration of chemotherapy, other medications, and blood draws. 

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

• Number of people diagnosed with the virus: 36,050,730
• Number of people who died from the virus: 618,106

It was another busy day at the Farm. Check out our daily early morning visitor... a fox. It is no wonder that Sunny goes crazy whenever he visits the house. 

It was super hot today, yet I spent several hours outside placing our plants from DC in the backyard. In addition, I watered the plants. You would think that would be easy... with a hose! NOPE! I did it by hand. Believe it or not, the backyard does not have a water faucet/hose bib. Which is why today, I called the plumber and approved the estimate to install a water outlet in the backyard. There is NO WAY we can continue to hand water in this heat. After the time outside, I felt like I was going to pass out. 

Meanwhile it was day two of the stairs and banister getting sanded. It is a big undertaking because it is all by hand. Wood pieces are everywhere. Tomorrow more fun happens, as the electricians are shutting power to the house for a day in order to install a new electrical panel. In addition, the HVAC folks are coming back again. 

I started on my clothes closet today as well. All my clothes are kept in Mattie's room. Mattie's room has three great closets. One of which is a walk-in. Over the years, Peter added all sorts of shelves to these closets. Which really enabled me to store a ton of things in there. I thought going through the clothes closet would be easy, but just like everything else it's difficult. 

It is challenging to dig through 26 years of one's life and pack up. That alone would be difficult enough, but then managing all the house renovations and driving back and forth daily make this exhausting. 

Thankfully I got back to DC before the terrible storms hit. It was torrential rain, lightning, and thunder. Sunny couldn't take it. He went into the walk-in closet and jumped on the wire racks. Specifically he jumped onto the blanket I leave for Indie, our cat. 

Sunny never liked thunder before, but now, he becomes deathly frightened. Which is why he dug under the shed two weeks ago to hide from the sound of thunder. It is quite ironic that he can fit his body in such tiny places when motivated! 

Monday, August 9, 2021

Monday, August 9, 2021

Tonight's picture was taken on August 6, 2009. I know this for sure because I can picture this moment as if it were yesterday! We learned that Mattie's cancer diagnosis became terminal the day before. On this day, we went to the clinic to talk privately with Mattie's doctor. While we went to the meeting, Mattie was entertained by his art therapists and even Kathleen, an inpatient nurse, came down from the floor to spend time with Mattie. The intriguing part of this photo was Mattie's expression. We had just come from talking with his doctor, and you can see that Mattie was studying our facial expressions! He understood that things were not right and really wanted assurance from us. 

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

• Number of people diagnosed with the virus: 35,906,688
• Number of people who died from the virus: 617,211

Sunny and I headed to the house today. I had a meeting with another arborist. There are so so many trees on the property, and they haven't been cared for. In fact, today's arborist said that the trees haven't been cut and shaped in over five years. Apparently he can tell by looking at the branches. 

Any case, today's arborist alerted me to poison oak in the backyard. It is the three leafed plant behind the tree, coming out of the bottom of the fence. In addition to that he wanted to show me the lighter colored dirt near the tree. I thought it was sand, but he says it is some sort of chemical that someone threw on the dirt. He advised me to go get the sample analyzed! I get him, but on top of everything else I am doing, getting this patch of soil analyzed is low on my priority list. I also learned that six trees on the property have become infected and therefore in his opinion have to come down. Another large expense which isn't going to happen just yet! 

In addition to all of this, the wood refinishing folks are back. This week they are sanding the staircase and banister. In reality this job is MUCH MUCH worse than the floors. Because with the floors they can use a machine that captures the wood particles. Not true for the stairs, they are done by hand and are labor intensive. I have come to the conclusion that I am going to stop cleaning. Every time I try to clean and organize something, it becomes a mess from the work being done on the house. I am very frustrated. 

In between multiple tasks, I finally lined the pantry. The painters did a great job cleaning the shelves in there, and I want to try to keep them as clean as possible. So the hope of putting those contact grip liners on the shelves will help me achieve that goal. 

Sunday, August 8, 2021

Sunday, August 8, 2021

Tonight's picture was taken in August of 2003. Each August we had the tradition of taking Mattie to Los Angeles to visit my parents. That day we took him to the LA Zoo. When Mattie was diagnosed in late July of 2008, we already booked airplane travel to fly out to Los Angeles in a few weeks. I even remember telling Mattie's oncologist that we were going on vacation and would have to start chemotherapy when we returned. I am sure he thought I was NUTS! He gave me a talking to and basically chemo started within days of Mattie's diagnosis! How I thought we could go away is beyond me. I had no understanding for the aggressiveness of cancer back then. 

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

• Number of people diagnosed with the virus: 35,757,980
• Number of people who died from the virus: 616,816

I had a slow morning because I wasn't feeling well yesterday. Thankfully today I have no fever, just feel very tired. We had the UHaul truck on hand again today and we packed up both our deck and balcony. For years this deck was "my secret garden." In fact, there is an overhang above the brick wall. I can't tell you how many people would look in and check out our garden. When I caught them looking, they always complimented me, and I recall one woman thought I was from another country because of my gardening style! 

The view of our former garden from Mattie's bedroom window. Each spring we would paint the deck, buy flowers, and plant them! It was a labor of love, which my neighbors above me appreciated. 

Peter worked the whole day loading and unloading the truck with plants and flower pots. It was a difficult job, and I admit I did very little lifting today. 

This is the current state of our deck! Big difference no? To me it is a sad sight and a reality check for me that we are really leaving our DC home.