Saturday, July 10, 2021

Saturday, July 10, 2021

Tonight's picture was taken in July of 2008, only a few weeks before Mattie was diagnosed with cancer. We took him for a nature walk and as you can see he found a stick along the way. This was a very usual occurrence! Mattie loved to find a trinket on all his walks, and would bring all sorts of items home. Anything from pinecones to sticks and stones. We had quite a collection for years in our commons area. 

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

• Number of people diagnosed with the virus: 33,847,207
• Number of people who died from the virus: 607,135

Last night, our upstairs neighbors invited us over to their home for drinks. We have known this couple for years, but ironically we have never done anything socially. But now that we are leaving, they wanted a chance to say goodbye. We had a lovely time chatting and spent six hours with them. In fact, they said, they were almost sorry they had us over last night, because it points out what they missed all along, and what they will miss when we are gone. I thought that was a lovely comment. Given how sad I am about all the things changing rapidly before me, last night was very appreciated. It was also fascinating to hear their insights about me, mainly because we haven't spent much time together in the past. Yet it reminds me that even in brief interactions and conversations, we make an impression and impact on people. 

My neighbor reflected on the fact that she doesn't have other neighbors over to her home. She said that Peter and I are probably much more social.... meaning that we most likely invited neighbors over to our home over the years. I told her the answer is NO! Clearly it isn't because we are not social. Instead, I feel it is the nature of living in the city and in a large complex. I also think in the city we are all trained to be more cautious and as such that provides a built in social distancing!

We spent a full day at the house today! What did I accomplish? I would say just a lot of running around to paint stores. First to get paint chips (those small samples of paper that display the paint color), and then to get actual paint. We wanted to see what the paint color looked like on the walls, before the team begins this week. 

Meanwhile, the king of the house is settling in!

It's like finding Waldo! I would say the only one who has absolutely taken to homeownership is Sunny!

This is a Saucer Magnolia. I haven't seen one of these trees since I was a little girl and living in New York. My grandmother had one in our front lawn. This house has three of them! When I saw this blossom a few days ago, I immediately thought of my grandmother. 

Peter bought a big sun hat, as he spends a lot of time outside weeding and pruning trees!

So I narrowed down the walls colors to one of these ivory colors. It was later in the day, so the natural light was fading. Therefore, I will go back at it tomorrow, as I have to pick all colors by Tuesday. The color on the right is called Navajo White by Benjamin Moore. This was a color my grandmother swore by, in fact, I think her siblings also gravitated to this color. 

The left is Medici Ivory and the right is Navajo White. It is hard to tell, but the Medici has more yellow tones and the Navajo has more blush tones, but it is still a solid ivory. 

Sunny's got the life!

Friday, July 9, 2021

Friday, July 9, 2021

Tonight's picture was taken in July of 2008. Literally weeks before Mattie was diagnosed. That day we took him to Roosevelt Island, a place we all loved to walk and explore together. Mattie loved climbing the rocks and picking up sticks. We had quite a stick collection for many years. Naturally whenever I pass these rocks on the Island now, I think of this moment in time. 

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

• Number of people diagnosed with the virus: 33,804,620
• Number of people who died from the virus: 606,722

It was back to back conference calls today. First I had our weekly research call to work on the big grant we are applying for, and then following that I had my monthly licensure board conference call. It was at today's meeting that I had to explain to the Board staff that I will be moving from the District in August to Northern Virginia. Therefore, that means that I can no longer serve as licensure board chair. Not my rules, it is just the way licensure boards work, you serve in the jurisdiction you live in. Do you know I have served on this Board since 2003, 18 years! I practically grew up on this Board. 

It is an awful time to transition from this Board, as our Board attorney died in February of 2020, our Vice Chair just resigned, and now I am being forced to resign because of my relocation. It saddens me because the Board is another baby of mine. I am basically its institutional history. I don't claim to be irreplaceable, but I will miss the staff and the great work we have done together for the District and its residents. In fact, board staff called me later today and they are devastated about my news. They said some very touching things, that will last with me forever.

But since Mattie died, there isn't much from my former life that I really liked doing anymore. Other than my work on the licensure board. Saying good-bye today, felt like a real loss to me. I am not sure why, but this serves as a final reminder that nothing from my previous (pre-cancer) life is a part of me anymore. There is a great finality to my life as a counseling professional and how I thought my life was going to turn out. I am sure in time, I will be able to rationalize this, but for now, all I feel is sadness. I don't like change at all, and having to move, manage a home, leave behind a space I shared with Mattie, and now say good-bye to the licensure board, is all too much to absorb. 

Thursday, July 8, 2021

Thursday, July 8, 2021

Tonight's picture was taken in July of 2009. That day I took Mattie to the outpatient physical therapy department to have a session with Anna. Most of Mattie's sessions were in-patient, but by July, Mattie was off of chemotherapy, and our focus and goal was to get him stronger and learn to walk again. We tried all sorts of walkers, but I would say that Mattie had great fear about falling and therefore was very cautious about taking steps. Of course, now in hindsight we also know that Mattie's cancer was spreading and therefore his level of pain had to be intense. All I can say was Mattie was a good sport. Despite how badly he was feeling, he always tried and was truly committed to fighting the disease and rehabilitating. 

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

• Number of people diagnosed with the virus: 33,787,371
• Number of people who died from the virus: 606,443

Today was the first day in two weeks where we did not go to the house. Peter had important conference calls to make for work and I needed to focus on my portion of the grant proposal that we are submitting with a team at the end of the month. Because the house has no connectivity yet and the fact that on any given day I am juggling 12 things at once, it makes it impossible to do any meaningful writing at the house. So I was glad to have this time at our DC home today. 

Though I wasn't at the house, I was still dealing with house things. I am happy to report that painters are starting on Tuesday or Wednesday of next week. Tile floors will get professionally cleaned and sealed on Thursday and Friday of next week, and I signed a contract for first floor wood floors to get refinished at the end of July (mainly because right now I call the first floor a clown car, as in each room the wooden floors look different in color)! It was a red letter day!!! I feel much better with a plan, as it was finding the right people and figuring out what we can budget now was stressful. Needless to say, I am looking for the perfect ivory paint color for walls in the house. Though our walls in DC, have wonderful Mattie Miracle colors, I think long term having a basic color will be important, and LORD knows I don't want to paint the whole house ever again. At some point this weekend, I am going to the actual paint store to get more samples to test out on the walls. So I think it will be another busy weekend as we get the house ready for contractors next week. 

Wednesday, July 7, 2021

Wednesday, July 7, 2021

Tonight's picture was taken in July of 2009. I most likely snapped this photo because it illustrated how Mattie moved around. To get from the couch to the floor, he would literally slide down the couch until he reached the floor. You can only imagine how challenging and frustrating this was for a 7 year old, who once knew how to walk. This was the part of Mattie's cancer journey that we weren't prepared for, the fact that Mattie never walked again after his limb salvaging surgeries. Cancer treatment was hard enough, but his physical limitations truly impacted his outlook and psychosocial adjustment. 

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

• Number of people diagnosed with the virus: 33,767,147
• Number of people who died from the virus: 606,195

At some point today, I felt like having a meltdown. Just so much coming at me all at once and trying to juggle so many people and renovation issues! I met with the painting company this morning and the leader of the painting team. They walked through the house and I could see their two week time line to complete the work, was going out the window. They have now prepared me that they need a month. Keep in mind I did not fight them, because I can see the problems they have to correct! Holes everywhere, cracks, and poorly done seams in the ceiling. All these things have to be repaired before painting. So I had to take that in and digest the fact that we truly have no move in date in sight!

Before pricing anything out, I thought we could renovate four bathrooms. Do you know that renovating a bathroom can cost $20,000 or more? So needless to say, reality has set in and I know we can't renovate bathrooms right now. We can't because thanks to the poor condition the previous homeowners left this house, we have to manage big ticket items like electrical, plumbing nightmares, and HVAC. Electrical is a must because right now it looks like a disco in the house. Lights are blinking, and you can't have multiple things on at one time. Which is why we have to upgrade the whole electrical panel!

On Friday, we are getting cable and wifi in the house. Thought that would be easy! Of course not! Today, I heard noise, so I opened the door. It turns out it was an utility person marking where the utilities are around our house, because the cable company most likely has to run a line to the house! DID NOT want to hear this, or hear about the potential digging to accomplish this! Honestly, one more thing, and I am going to crack up. 

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.