Tuesday, July 6, 2021

Tuesday, July 6, 2021 -- Mattie died 614 weeks ago today.

Tonight's picture was taken in July of 2009. Mattie was home between hospital treatments and that day we all needed a project. Something to do other than to focus on cancer. So we painted our deck. This was an activity Mattie was involved with in the past, and this time, he painted creatively. Since Mattie couldn't stand independently, he sat and used his left foot to hold a paint brush. Mattie's left leg was called Curious George. It was the only appendage intact, not operated on and it was stronger and he used it like an arm and hand. 

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

• Number of people diagnosed with the virus: 33,743,985
• Number of people who died from the virus: 605,878

Don't ask me where the days go! We got up early, and both of us did several hours of work while home in DC. Then around lunch time, we packed up and headed to the house with Sunny. The hours just flew by there and I can't say I had tangible accomplishments. 

I spent most of my time on the phone with the painters, then the pest control company, then mosquito squad (who manages the horrible mosquitos once a month), then met with a wood floor restored, did two loads of laundry, walked Sunny, and so forth. You get the picture. The former owners of the house installed THREE different types of wood floors in their house, on the first floor alone we have oak, maple, and cherry! All these woods have different colors and characteristics. Trying to restore them so they all look similar in color is an undertaking. It wouldn't be so awful alone, but when you factor in big expenditures like replacing an HVAC system, getting a whole new electrical panel, and let's not talk about the many different plumbing nightmares, then the floors become a nice to have, but NOT a likely to have at this point in time. Nonetheless, I really like the floor company, and the owner himself came out to do our estimate. 

Given that I run most of Mattie Miracle single handedly, I know all too well the importance of juggling multiple things, and doing hands on work. If I stop working, in many ways Mattie Miracle would come to a screeching stop. I can see the house isn't too far behind. This thing is a full time job, and we are working around the clock. I have more upbeat days than some, but today isn't one of them. 

Monday, July 5, 2021

Monday, July 5, 2021

Tonight's picture was taken in July of 2009. Mattie was home between treatments and that weekend Peter and Mattie worked on building the Taj Mahal out of Legos. This gigantic structure sat in our living room until very recently. I literally had it for over a decade. But of course over time, it got full of dust and pieces started separating apart. So I dissembled it, but kept the center part of the building. The center dome now sits in our kitchen and every time I look at it, it reminds me of this moment in time. For us Legos were therapeutic. It kept us all focused, talking, and busy. Busy enough to forget for a few hours our reality. 

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

• Number of people diagnosed with the virus: 33,722,290
• Number of people who died from the virus: 605,567

I would say that yesterday and today, I wasn't myself. I am chronically tired and as a result look at tasks in the house that have to get done, but somehow can't manage to tackle any of them. The only thing I can muster energy for is to cook, clean up, and walk Sunny. Everything else isn't happening. While at the house today, Peter got a lot done..... things like weeding (which could be a full time job on this property), removing nails and other items tacked into the walls, and together we took down all the curtains. I wanted them down, so I can get a set repaired and all of them dry cleaned. 

As of this month, I have been writing daily blogs for 13 years. It is hard to imagine, but yet this is a fact. Recently, I have been chatting with a person I know who recently lost her mom to cancer. In our discussions, I was telling her about the benefits of telling one's grief story. I mentioned this to her because she apologized to me for repeating herself! I told her no apology was necessary, because I understand the importance of being heard, and hearing myself share Mattie's journey, and my reactions to his death. It is over countless times of sharing these stories, that somehow they become a part of me, and in the process, it enables me to cope with the loss. It doesn't happen overnight, and as I remind my friend, grief is a lifetime process and task. 

As I shared tonight's photo and commentary, I thought to myself..... I know I have probably shared this image and insight somewhere else on the blog. After all, I unfortunately can't get new material on Mattie to share! Yet I know each time I tell a story, different aspects pop up in either how I tell the story, or how I interpret the situation and feeling. Which reminds me once again, the importance of writing, sharing, and reflecting. I wouldn't think of a day going by without writing on the blog. In the beginning, it was important that people read my words and thoughts, as I was quite aware that when Mattie was alive, thousands of people read the blog daily. The volume in readership is no where near that today. At first it was hurtful, but now I have come to understand that not everyone wants to read my grief journey, and that's okay. I write for my own sanity and I write to remember Mattie. Without writing, it is very possible to forget the nuisances of our boy and our relationship with him, as I know all too well that this is the cruel joke time can play on the bereaved. 

Sunday, July 4, 2021

Sunday, July 4, 2021

Tonight's picture was taken on July 4th of 2008. Literally weeks before Mattie was diagnosed with cancer. It is still hard to believe, as he looked like the picture of health here. That July 4th, my parents were visiting and we all went to the DC Aquatic Gardens. A place that Mattie loved and we wanted to introduce it to my parents. The special part about July at the Gardens are the blooming of the incredible lotuses! 

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

• Number of people diagnosed with the virus: 33,716,377
• Number of people who died from the virus: 605,519

I had a horrible night of sleep last night. I woke up at 3am, with an incredible headache and nausea. Typically I try not to move around at night, because it stirs the cat and dog, and then there is no peace. But I had no choice, as I needed migraine medication asap. About an hour later, I got back to sleep, but I woke up feeling absolutely depleted. 

We did go to the house today, but unlike Peter, the only thing I did was walk Sunny. Peter is making great progress at weeding! You can see him and the front bed of bushes. However, prior to Peter weeding, you couldn't see anything other than green weeds. The weeds in Oakton are huge and I can see it will be a concerted effort to keep them at bay. 

It is hard to believe that today is July 4th. I feel like I am living in a vacuum, with each day being just like the day before. One minute it was May, and I was working on the Foundation Walk, and the next minute it is July. June was a blur, and I can see July won't be much better. Given how I was feeling today, I knew I had to slow it down, otherwise, I won't be able to function, much less manage what's going on at the house or move. For the last 25 years, we literally could walk out of our home in DC and see the National Capital's firework show. We have been in a remarkable location and tonight I am very cognizant that this will be our last time we will see the fireworks in DC. Because in the future, commuting in will not be possible! Therefore, I am going to soak in the moment and capture the sights and sounds in both my iphone and mind. 

Saturday, July 3, 2021

Saturday, July 3, 2021

Tonight's picture was taken in July of 2009, during July 4th weekend. That weekend, friends invited us to go to a local resort so that Mattie could do something more normal and see the fireworks. In theory it sounded good. We arranged for this getaway with Mattie's treatment team, because stars and planets had to align to make this possible. We pulled it off, but despite our best efforts it was not a good experience for Mattie. In fact, the whole trip made him very angry and he lashed out at us. I think seeing other kids his age doing normal things like running around and swimming, was too too much for him to face and handle. Certainly I knew this could have been a possible reaction, but since Mattie seemed interested in going, I figured it wouldn't hurt to try this adventure. I can still remember how upset Mattie was, and in turn how devastated Peter and I were seeing Mattie this way.

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

• Number of people diagnosed with the virus: 33,711,612
• Number of people who died from the virus: 605,578

Another full day at the house! Peter snapped this photo, because toward the end of the afternoon we couldn't find Sunny! Where did he go? To the master bedroom, where Peter has an aero-mattress set up. Sunny hopped on the mattress and brought his treat with him. This was the funniest thing I saw all day!

This morning we went to the Container Store to meet the designer who visited our home on Thursday. She wanted to show us the actual products as well as share her ideas about setting up three of our bedroom closets! Since Peter and I are giving my parents the master bedroom, we will be sleeping in one of the other bedrooms that is really meant for a child or teen. The closets just won't work for us as they are, which is why I needed some design help, especially since the room has an alcove right outside the closet. An alcove, which to me, would be the perfect place to extend the closet system. 

There is something a bit magical about going to the Container Store. There is a receptible for just about every need you may have. Given that we have lived through over a year of COVID, it is quite nice to be able to walk back into stores and see items first hand. 

Friday, July 2, 2021

Friday, July 2, 2021

Tonight's picture was taken in July of 2009. At that point, Mattie's chemotherapy had ended, his surgeries were done, and we were focused on receiving weekly dosages of the experimental immunotherapy and moving full force with physical therapy. Our hope was that Mattie would regain strength in order to return to school in the Fall of 2009. What a pipe dream. Because by August 5th, six weeks off of chemotherapy, Mattie's cancer metastasized throughout his body. 

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

• Number of people diagnosed with the virus: 33,691,160
• Number of people who died from the virus: 605,301

Last night was a first! DC had a tornado. The rain and wind were horrific! Fortunately we were home. However, Sunny was NOT happy what so ever. He took to the kitchen for cover. So I sat on the floor with him, under a blanket. 

I opened up the blinds in our bedroom this week, and I was greeted with more graffiti! I just can't take it, nor can I take that the District does nothing about it. I keep reporting issues in our neighborhood, but nothing gets done. 

From my bedroom window I can also see the encampment right outside our building. There are over twenty tents there, along with District supplied port-a-potties, hand washing stations, and garbage receptacles. Yet where do people go to the bathroom.... on our grass. The way the District is managing the homelessness population has become totally ineffective. As supplying tents is not the answer, when people need access to mental health services, rehabilitated, and given opportunities to develop skills. 

Here is the latest at the house! After last night's storm, we landed up with a flood in the basement. The issue is the sliding door. The whole thing needs to be replaced. Our to do list is NEVER ending! Literally Peter and I can spend an entire day triaging one thing to another. 

On top of this, I contacted Verizon today to set up our internet, cable, and phone service for the house. I was expecting to do battle, like we have with Comcast in the past.  On aside, have you ever tried to chat with Comcast? Good luck, you land up interacting with a bot, rather than a person, and it is totally ineffective and frustrating. Today, I decided to try an on-line chat with a Verizon representative. I was on a chat session for 90 minutes, and the person helping me, Patty, was LOVELY. She walked me through the process, we discussed my options, and Verizon comes out a week from today to get us set up. In comparison to everything else, this conversation today was a gift. 

Thursday, July 1, 2021

Thursday, July 1, 2021

Tonight's picture was taken in June of 2009. Mattie was home between hospital stays and was playing in our living room with a tub of water. This pink tub was given to patients in the hospital for various purposes. Mattie NEVER used the tub for its intended purpose. Instead, the tub was useful for water play. As you can see, Mattie worked to create Sponge Bob out of one of my yellow kitchen sponges. Mattie knew I did not like this TV character, which may have been why he loved Sponge Bob so much. It was the joke between us!

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

• Number of people diagnosed with the virus: 33,676,514
• Number of people who died from the virus: 604,996

My friend Catherine came over with her daughter, Sara Catherine, today. We go way back as Mattie and Sara Catherine were in preschool together. I remember her as a little girl who used to hold my hand whenever I visited the classroom. 

We had a lot going on, but Sara Catherine really wanted to see our pool and I am happy I could juggle it today. As I told Sara Catherine, she is the first person we know to have swam in our pool. Even Peter and I haven't been in the pool yet. Sara Catherine loved it and I can only imagine if Mattie were alive. As these two kids spent many summers together at Sara Catherine's community pool. 

Meanwhile, we had the electrician over today from 9am to 6pm. A full day and he returns next week. In addition, I had a visit from the container store to discuss closet organization systems with me. 

In the midst of all of this, we had a major storm with lightning and thunder. Two things Sunny hates. So he hid! He hid so well, we couldn't find him! Where was he, in one of the closets, rolled up in a ball, sitting on a shelf! It is too bad I did not have my phone to take a photo!

I snapped this photo toward the end of the day! Sunny was sitting between the kitchen and our family room! Staring in the direction of the backyard! He is definitely the King of the House and Yard!

Wednesday, June 30, 2021

Wednesday, June 30, 2021

Tonight's picture was taken in June of 2009. Mattie was home between hospital treatments and was busy playing on our first floor. As you can see we had train tracks in the background and car tracks in the foreground. If you could have seen our home back then, you would have thought we were living in a toy store. The chaos we were dealing with all around us was truly overwhelming. I had paperwork stacked all over the place, and frankly I just couldn't keep up because we were rarely home. After Mattie died, I had neither the energy or desire to clean up and our home looked like an episode of hoarders for years. It wasn't dirty, it just had things, and more things everywhere. Why? Because Mattie received countless gifts from people in the hospital and in the community daily, for over a year! Trust me it added up. 

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

• Number of people diagnosed with the virus: 33,664,197
• Number of people who died from the virus: 604,698

The stress continues! Somehow as it relates to certain things, I am just clairvoyant. I have a 6th sense when things are going to be overwhelming and stressful. I knew this on the day that Mattie was diagnosed with cancer, and I knew it when planning to buy a house. I had a feeling that homeownership was going to be challenging, but I would have to say it is beyond stressful, and rather it is close to a full time job. The problem is that Peter and I both have our hands full with real work! 

It is the constant juggling of contractors, people coming to do estimates, trying to clean the house, and the list goes on. I have no idea when all of this will be over and therefore, I have NO IDEA when we are moving. What I do know is that by the time all of this is over, I may not have the energy to do the actual moving. Today we dealt with the locksmith again. He has done a wonderful job of replacing all the locks on the house and installing locks on our backyard gates. Ironically, the locks that were on the house were very flimsy. Then we had the pool cleaned, went over a plumbing contract, and this evening, had a 90 minute discussion with a potential painting company. The fun just continues tomorrow, and tomorrow, and tomorrow. 

All I can say is I should have been an electrician, plumber, HVAC professional, or even a painter. When I see the cost of these services, all I can say is wow! 

Tuesday, June 29, 2021

Tuesday, June 29, 2021 --- Mattie died 613 weeks ago today. 

Tonight's picture was taken in June of 2009. Mattie was at the outpatient clinic and was playing with toys in a tub of water. We gave him bubbles and a wand, because we wanted him to exercise his lungs, as he was recovering from lung surgery. In typical Mattie fashion, we had to be creative with how therapy exercises were performed. 

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

• Number of people diagnosed with the virus: 33,650,467
• Number of people who died from the virus: 604,423

Peter and I have been dealing with this house now for over a week! All I can say is WOW! I can see why I haven't owned a house in the past and frankly I now can safely say I haven't missed out on anything. I find the whole thing a royal headache and completely a time and money drain. COVID truly impacted the housing market and as such it made it very very difficult for the buyer. In order to buy a quality house, one basically had to pay over asking price and waive a home inspection. I would like to believe that people are honest about their homes and how they upkeep them. What I do know is the upgrades we were told were made to the house, NEVER happened. So we are juggling electrical, plumbing, and HVAC costs we hadn't factored into the renovation equation. 

I range in emotion over this house. If I lived in a world with access to endless money, then home ownership would be for me! But since that isn't the case, I have to be realistic. Yet how this house was maintained is way below my comfort level. If I only had trade skills, I would do the whole thing myself! With that said, I have to say that everyone we have been contracting with has been professional and very customer focused. I suppose this surprised me, but I welcome this as it is hard enough balancing what's happening in the house on any given day. Today was a plumbing inspection and estimate, another bath remodeling estimate, and lots of phone calls. 

Dare I forget, I also was working on building connections with other non-profits today who we would like to include in the government grant we are applying for! So Foundation work continues through the chaos.

Monday, June 28, 2021

Monday, June 28, 2021

Tonight's picture was taken in June of 2009. Mattie was in the outpatient clinic and most likely at the art table. This had to be Mattie's favorite space in the clinic. He loved to create, he loved interacting with his art therapists, and one thing was for sure, Mattie was very prolific during his 14 months in treatment. 

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

• Number of people diagnosed with the virus: 33,638,768
• Number of people who died from the virus: 604,112

This morning I was visited by our friend in the complex. Maria wanted to give us a house warming gift. Since I am the plant lady, it makes sense to give me a green friend. This is Swedish Ivy. Rather ironic, since it is a plant that is not from Sweden and it also isn't related to ivy. Which makes it house friendly for pets! But this Swedish Ivy came from a clipping from the White House years ago. Maria's mom has cultivated it over the years and she gives clippings as gifts. I am happy to have my own clipping and it is my hope that I can keep it growing and the tradition going!

Maria has known us pre-Mattie, with Mattie, and of course now without Mattie. We have a long history together, which is why it is hard leaving a community we have called home for 25 years. 

Another full day at the house again! We had a pest inspection, our radon test was finalized and we do not have a radon problem (THANKFULLY!), and I did more cleaning. I literally have to take it in stages because there is SO much to clean and at the same time I am juggling people coming in to do work or to give me estimates. 

I took a photo of the kitchen floor. The grout is making me nuts. It is grey to black in places! It is that dirty. No amount of cleaning on my end is getting it brighter. So thankfully in July a tile and grout company is coming over to professionally clean the tiles and seal them.  

This is what the grout should look like. These tiles were spared a lot of dirt, as they are in a closet!
Meanwhile, we waited all day for the plumber to show up. It never happened because he was still at another job. So we rescheduled for tomorrow. 

Despite it being close to 100 degrees today, Sunny still wanted to walk. That too was debilitating, not to mention running back and forth between homes. Keep in mind that this isn't the only thing we are doing. Peter is still working full time and I am running the Foundation. The new house has no connectivity yet, so when I have scheduled calls and work that requires interfacing with people, I have to be in DC. It's quite the juggling act, is all I can say. 

Sunday, June 27, 2021

Sunday, June 27, 2021

Tonight's picture was taken in June of 2009. Mattie was home between hospital treatments and as you can see our living room was filled with all sorts of things. Toys of every kind and hospital equipment. Due to Mattie's surgeries his most comfortable place to sit and play was the floor. Being on the floor enabled him to scoot around, rather than walk. Something he never did independently again after his surgeries. 

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

• Number of people diagnosed with the virus: 33,624,433
• Number of people who died from the virus: 603,965

Peter and Sunny had their first night at the house on Saturday. However, because there are no shades or curtains, Peter was up at 5am. He worked the entire day cleaning out closets and breaking apart things like old outdoor patio chairs. The former owners left us a lot of stuff. I would call it bordering on junk. If we should ever buy a house again, we have learned, that everything MUST be removed from the house by the previous owner. As this removal is exhausting, takes time, and can be costly. Needless to say, by the time I got to the house this afternoon, Peter really overextended himself. That was my fear leaving him there alone. 

Today's photo is of the day lilies in the backyard!

The backyard is filled with oak leaf hydrangeas. The first time I saw such a hydrangea was in North Carolina. They are truly a glorious sight.

The house has several Japanese maples. My maternal grandmother LOVED these trees. She planted one in the first house I grew up in, and somehow I haven't seen one in years. Until now. 

Next to the maple is English Lavender. The bush with the purple flowers. It is fragrant and actually good bug repellant. 

The master of the house!