Saturday, August 28, 2021

Saturday, August 28, 2021

Tonight's picture was taken in March of 2009. We were in the middle of the pediatric unit hallway and getting Mattie to do his physical therapy exercises. Mattie traveled with an entourage of friends. In this photo was Kathleen (his nurse), Mary (a child life volunteer), Meg (a child life intern), Linda (Mattie's child life specialist), and Brandon (Mattie's best buddy in cancer). What you can't possibly know was that Dancing Queen was playing and everyone on the floor could hear it. In fact, many of the admin on the floor got to know Mattie because he always had music playing and was doing some sort of activity in the hallway. 

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

• Number of people diagnosed with the virus: 38,749,506 
• Number of people who died from the virus: 637,174

Do you see Indie? She sitting in a small cat tree by the window. This is her old cat perch from DC, a very familiar spot! Indie loves being be the window and checking birds that fly by. She is most definitely a birder!

This cute kitty was a nightmare last night. It was her first night at the house and she was ON the entire night. Very vocal, screaming, crying out, and moaning. When she wasn't doing that, she was jumping all over us in bed. Neither of us got any sleep last night. 

It was another full day! There is so much to unpack and organize that I literally feel like a chicken without a head. I flit from one room to the next, trying to accomplish something, but never really finish anything. 

Sunny has been so good, that I felt he deserved a long walk this morning. He loved it! I notice if I take him for a walk, he is happy to entertain himself for the rest of the afternoon. 

The neighborhood is surrounded by trees and woods. A night and day difference from living in DC. Sunny absolutely loves exploring and looking for critters. 

This deer did not disappoint. He was literally walking across a neighbor's front lawn. Luckily Sunny was leashed, otherwise, this deer would have gotten a work out! 

I spent the day going through boxes and re-organizing. What Peter constantly reminds me is that I did an excellent job packing our closets in the townhouse. I literally filled every nook and cranny and now that we have more space, I can actually understand the volume of things we own. 

Peter made another run to the townhouse and is slowing cleaning out the kitchen there. I couldn't get over the volume he brought back for me to process today. It literally took me the whole day and unfortunately there is still more to pack up in DC. Frankly it is overwhelming and we are both extremely tired of working around the clock. 

Friday, August 27, 2021

Friday, August 27, 2021

Tonight's picture was taken in May of 2005. Mattie was three years old and the stool that he was standing one, was made by hand. Peter and Mattie built this John Deere tractor stool together. Mattie loved all vehicles, and needed a stool to reach the sink in the bathroom. Mattie was the kind of child who was going to do things when he was ready. Not on a pediatrician derived milestone check list. To inspire Mattie with potty training and becoming more independent in the bathroom, the stool was an incentive. It actually worked well and once Mattie was ready, he caught onto potty training quickly. On an aside, this stool is so well made that I continue to use it to reach things in my clothes closet.

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

• Number of people diagnosed with the virus: 38,500,016
• Number of people who died from the virus: 634,438

Last night Peter and I were sitting on the couch and Sunny joined us. This is very rare, as he's not a couch person. In any case, he is slowly adjusting to his new environment. 

Thankfully I slept last night! Being in my own bed helped a lot as did having air conditioning. I got up at 6:30am, as we had the plumber coming. The previous plumber we had wasn't a good match for us, and never completed the work. Today's plumber will be working with us and is lovely and competent. I have no idea what the former owner was thinking but with this big backyard, there is NO hose bib! Making it impossible to water the garden. We are fixing this issue! 

It is very difficult unpacking when managing workmen and jumping from one issue or question to another. I started the morning by cleaning off the driveway and garage. They were both filled with red clay/mud from when the electric company was here and dug up lines. It made no sense cleaning inside, because as soon as you walked outside, and stepped back in, mud got everywhere. Along with plaster dust footprints.... which are my nemesis right now. 

This afternoon, we had a terrible rain and thunder storm. That sends Sunny right into my parent's closet. Apparently Sunny deems this as the safest or most quiet place in the house. 

While juggling the plumber, I began cleaning out the built in shelves in the office. Each was filthy! Grime from the previous owner as well as plaster dust lining each shelf. It was a big mess. I have decided to use most of these shelves to highlight Mattie Miracle and Mattie. 

The Lego dome is from Mattie's Taj Mahal that he built with Peter, during treatment. It was a huge structure. About two years ago, I broke it down and only kept the dome. Next to the Taj, is a memory box I made with one of our Walk logos. The heart painting was given to me by Mattie on Valentine's Day. It says Love Mommy." On the bottom shelf I received a tulip orange candle from a psychologist in the Netherlands. She is a Mattie Miracle fan and wanted me to have this. 

When Mattie died, we created an obituary. The Washington Post actually sent us the plaque of the obituary that you see on the lower shelf.

Today we brought Indie to the new house. We boarded her with the vet since Tuesday. We felt this was the best thing to do with her, so that we wouldn't lose her when the movers left the doors open. I learned from our hospital days with Mattie... no one reads signs. So I did not feel comfortable leaving Indie in a room with a sign on the door telling movers not to open the door. 

Meanwhile, we ordered a big cat tree for Indie. We wanted her to have a nice surprise awaiting her. We knew she would like it, because she had smaller versions of this at the townhouse. Indie gravitated to it immediately and began looking out the windows in Peter's office. 

The queen of the office!

Thursday, August 26, 2021

Thursday, August 26, 2021

Tonight's picture was taken in Easter of 2009. Like so many holidays, we were in the hospital. That day, friends came by and held an Easter egg hunt for Mattie in the middle of the pediatric unit hallway. The eggs were creatively placed so that Mattie could reach them from his wheelchair. Everyone knew Mattie wasn't interested in candy. So instead the plastic eggs were filled with little toys. Mattie loved it!

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

• Number of people diagnosed with the virus: 38,374,252
• Number of people who died from the virus: 633,479

Though Peter and I were exhausted last night, I couldn't sleep. Sunny and I were up all night along. Most likely for numerous reasons. First, we couldn't sleep on the second floor because the air conditioning system died on the second floor. It was an oven up there. So we slept in the family room. We were too tired to deal with aeromattresses, so I gave Peter the couch and I slept in a big rocking chair, which I used to use for Mattie. I couldn't get comfortable and literally at 2am, I got up from the chair and went to lie down on Sunny's dog bed. He wasn't using it, so I did! It is actually very comfortable, but I still couldn't sleep. I am not used to the all the quiet around me. We both got up at 6am because we had many of the trades coming at 7:30am. Peter snapped this photo during sunrise. As you may have already figured out, what drew me to the house in the first place was the backyard. 

I spent a good portion of the day trying to dig out of boxes and bags in the kitchen and pantry. I really appreciate several of the emails I am receiving.... both of support and sharing your appreciation for hearing more about Mattie through many of the memories I have shared over the course of our move. I truly love hearing that my stories are helping you get to know Mattie better. You are right... Mattie will be integrated into every room of our home. 

In 2019, Peter was awarded the Unsung Hero award by the Washington Nationals. He even got to throw a pitch from the mound and meet a player, and get a ball signed. Peter was acknowledged for his Mattie Miracle work. In the background of this photo, you see the chair I was sleeping in and my fleecy Mattie memory blanket. Peter made this beautiful gift for me one Mother's Day! 

I am slowly trying to put each room together. I have to purposefully tell myself that it is OKAY to change things up. That things don't have to be displayed the same way as they were in DC. Which is freeing because trying to fit an expectation is hard. 

This is the dining room set I was telling you about in a previous blog. My neighbors were moving back to Ireland and sold me the table, 6 chairs, and two table leaves  for $200. It is a lovely set from Macy's and I am glad to have a this set which ties me back to our DC life. 

On a side note, Peter reminded me that on August 24, 1994, we moved from Boston to Washington, DC. Rather ironic that almost exactly 27 years later, on August 25, 2021, we moved out of our townhouse to Oakton. 

The house has a new addition to it. The former owners called a portion of this new space the hearth room. I call it the music room. There I placed the piano our neighbor gave Mattie (in hopes he would take lessons) and a Victrola that Peter's family friend gave me years ago. It is on the Victrola that I place Mattie's ashes. 

A close up of the beautiful music box that holds Mattie's ashes, and on the box I always display Mattie's foot and hand prints. Along with a memorial candle, including a plastic spider. Mattie would approve! 

In the kitchen, I am displaying a beautiful plate a friend of Peter's made for us years ago. It features a profile photo of Mattie. On top of the range hood, I have two of my hot plate tiles that remind me of Mattie Miracle sun and in the center is a plate that we got from Peter's maternal grandmother. It talks about how friends who visit always land up in the kitchen. They LOVE her kitchen the best.  

In the kitchen I am also displaying two of Mattie's favorite rocks, as he loved collecting them, along with a mini brick that a family of a preschool friend created for Mattie. It basically acknowledges Mattie as the "King of the Legos."

Mattie's preschool teacher, and my close friend, Margaret, got me started on angel collection. She gave me my first angel and the center stone featuring a little boy angel. 

For years I have held on this mantel clock. My in-laws gave it to me. But I never had a mantel to display it. 

It was another hectic and stressful day. It started with electricity being SHUT OFF completely in the house at 8am. It remained off until close to noon. It was ridiculous and something I wasn't expecting. I couldn't work in closets and therefore had a hard time unpacking. 

In the midst of dealing with electricians and the electric company, the HVAC folks showed up. They were ready to work on installing a new air conditioning system for the second floor. The problem was they needed power. With the power off they couldn't work and they were ready to leave. 

That is until Peter lost it on these people. He got them to work together so that the HVAC people wouldn't leave and could start working, as we really needed air. 

We had the HVAC people with us for 8 hours! I really thought they were going to sleep over. It is close to impossible to focus on unpacking when you are managing people all around you trying to fix things. When they finally left at 6pm, I went upstairs and was stunned. The walls were a mess, some were scratched and chipped. I frankly wanted to have a hissy fit, given we just painted the entire house. Instead I got out my sponge and started to clean the walls and even the ceilings. I got most of the dirt and junk off, but under my breath, I wasn't happy and kept saying.... who does this kind of stuff? Needless to say after a very full day and lack of sleep..... cleaning floors, walls, and ceilings wasn't high on my list.  

The fun continues tomorrow with the plumber. But the extensive repairs we have had to do to this house is noteworthy. Thankfully the electricity is now up to code. We have replaced two out of three air conditioning condensers, added a new water heater and water filtration system, and next on the list is dealing with a leak in the living room ceiling, replacing all the gutters and fixing a portion of the roof which is rotted, getting a structural engineer to evaluate a chipped beam (uncovered doing electrical work) and finally dry walling the hole in our wall between the laundry room and garage and then painting the garage. So basically it isn't over any time soon. With all these folks coming in and of the house, it is virtually impossible to keep it clean. I am constantly cleaning, but it feels like trying to drink the ocean up, with a teaspoon. 

Wednesday, August 25, 2021

Wednesday, August 25, 2021

Tonight's picture was taken in April of 2006, at Mattie's fourth birthday party. It was his first party we hosted outside of our home. Several of Mattie's preschool buddies were in attendance and Mattie chose a dinosaur theme. This included a naturalist guided tour of the nature trails and a pretend dinosaur dig. Which entailed digging through a sandbox to find plastic dinosaurs! Mattie and his friends had a wonderful afternoon together. Peter snapped this photo of us, right before Mattie blew out his candles. I love this photo and the big smile on Mattie's face.  

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

• Number of people diagnosed with the virus: 38,221,908
• Number of people who died from the virus: 632,262

Peter and I got up at 6am. We were moving in overdrive, running around trying to get things ready for the movers. The movers called Peter and told him they would be at our place by 9:15am. So a set of movers show up in front of our building and Peter waves them in. They get to our townhouse and they seemed STUNNED by the amount of items in our home. They claimed that this was not what we told them during the phone estimate. Any case, they started setting up to wrap items and then our actual movers showed up. The first set of movers were at the wrong complex and clearly with the wrong customers. Can you imagine? Thankfully because I really did not have any confidence in this first set of movers. The movers were with us for 7 hours today. It was a LONG day. 

Peter and I haven't seen our living and dining rooms this empty for years. When I moved into this townhouse, I was 24 years old. I practically grew up there. 

As I mentioned in a previous blog, we packed all our other items ourselves. Today I put Mattie's ashes (which is in an Italian marquetry music box) in the car with us. 

This is a photo of a plastic ice cube. Inside the cube is a plastic bug. This ice cube belonged to Mattie. There is a little of Mattie in everything we have. 

Our empty bedroom. 

Mattie's room is now empty. 

Peter snapped a photo of our four moving guys. They worked very hard, given it was like 100 degrees today. 

One of our air conditioning condensers completely died. Therefore we have NO air on the second floor. It is like a sauna upstairs. So tonight, we are sleeping in our family room. I worked hard to get some things organized so that we had one room without a lot of chaos. 

Tonight Sunny is on a vigil by the front door. He senses the deer, fox, and other critters outside the door. 

Peter was driving up the driveway tonight! Apparently he met up with three deer eating roses in the front yard. 

It is midnight and it has been a very full day. Tomorrow the HVAC crew comes at 7am and our floor folks come at 7:30am. Though we had the floors sanded and restained, there are issues that have to be corrected. So there is NO rest for the weary. In addition, while moving in, we noticed a leak in the ceiling of the living room today. No peace on the FARM.

Tuesday, August 24, 2021

Tuesday, August 24, 2021 -- Mattie died 621 weeks ago today. 

Tonight's picture was taken in August of 2008. That day the Magic Man (Bob, Mattie's head of the lower school) came over to teach Mattie some magic tricks. Bob is a professional magician (in addition to being a head of school and educator), a skill he learned from his father. In many ways, Bob and Mattie were a lot alike, and Mattie had a natural ability to learn these magic skills and perform them at the hospital. Magic was extremely therapeutic for Mattie and he looked forward to Bob's visits. In fact, Bob got to know many of the children in the hospital, as magic tricks attract curious minds! Bob took our minds off of cancer for hour practically each week, he was a devoted visitor and he even gave Mattie his own special magic bag filled with tricks. 

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

• Number of people diagnosed with the virus: 37,980,821
• Number of people who died from the virus: 629,891

I kept a whole bunch of sketches in my filing cabinet. Frankly I forgot all about them, until I started cleaning out files. As soon as I saw these drawings, I immediately knew it was Halloween of 2005! How do I know? Because on October 31 of 2005, Mattie was hospitalized. I had brought Mattie to see his pediatrician two days before Halloween. I told her I thought he had an ear infection. She looked and said no. She dismissed us and I got the feeling she thought I was a hypochondriac. Unfortunately two days later, Mattie's ear infection turned into sepsis and we took him to the ER and he spent several days in the hospital. Including Halloween. That year, Mattie and I designed a calico cat costume from scratch and he was looking forward to wearing it to preschool. It did not happen! Also the hospital we took Mattie to did not have a pediatric unit and therefore there was no child life specialist and no one helping a scared child celebrate Halloween. 

So I asked Mattie's nurse for paper and a pencil. Together we started creating. This is the series of drawings you are seeing! Because we rushed to the hospital, I literally had nothing with me to entertain Mattie. The hospital did not have anything either. 

Mattie titled this drawing... Mattie's map. 

"Mattie's web"

Mattie's "Bee Hive"

"A Picture of Mattie"

"The Stroller" 

Since Mattie hated ALL of his strollers, I think it was funny that he decided to depict a stroller. Yet when you look at it, NOTHING about it looks like a stroller.

In my filing cabinet, I had a whole bunch of Matisse cut outs. These are shapes that I had cut for my kindergarten  lecture series that I did at Mattie's school for 7 years in a row. 

Mattie and I used to share a bathroom. So of course in my cabinets there are Mattie things. Like his toothbrushes and his favorite bath toys. 

Mattie loved bath time and could spend hours in the water if I did not pull him out! It wasn't so much about getting clean, he was all about playing with toys in the water. 

On the towel bar in the bathroom, I have hung these pieces of jewelry for 12 years. These are pieces Mattie created in the oncology clinic. The problem with moving, besides the obvious, is that the new space won't have a Mattie room. So I will have to figure out AGAIN how to display his items in an appropriate way. It took me five years after Mattie died to figure out how to showcase his creativity in our home. I liked what I did and it actually causes me to expend a lot of emotion and time to take apart all these compositions. 

The walk in closet in Mattie's bedroom! This may be my all time favorite closet. Over the year, Peter put in shelves for me! I can't tell you how much I stored in this closet! Personal items, professional items, Foundation items, and the list goes on!  

Mattie's mobile in our kitchen. As of this evening, I can safely say that Peter and I packed up almost everything in our home. Between the two of us, we have moved everything but the furniture. Tomorrow morning the movers come to handle the furniture. However, my kitchen has NOT been packed up, so the rest of the week, I will be focused on that and cleaning out the townhouse. 

It is hard to believe that tonight is our last night here. I love this space, the privacy, the security, and the memories. I can still remember moving into this townhouse. I was in my twenties and Peter and I slept on the dining room floor the first night until our furniture arrived. I can picture those first couple of day as if it were yesterday. 

Monday, August 23, 2021

Monday, August 23, 2021

Tonight's picture was taken in August of 2008. Mattie was a month into treatment and his friend Alex, from preschool, came over for a playdate. They were running in our commons area. Behind them was JP, our neighbor who recently died in February of 2020. It is hard to believe both Mattie and JP are gone. But I will never forget our commons area. It was a wonderful space for a child, and though it was outside, it is actually on the third floor of our building, so getting to this area from the street is challenging. I may be in the heart of the city, but I always felt safe here and I will miss our commons space and the sights and sounds of the city. Mattie learned to walk, run, bicycle ride, fly a kite, and drive Speedy Red in this space. 

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

• Number of people diagnosed with the virus: 37,935,277
• Number of people who died from the virus: 629,390

I had a conference call today with Thrivent, the company sponsoring the Take the Plunge Challenge. I learned that 62 organizations applied and Mattie Miracle was one of five selected to compete on September 9th. The competition is held live on Zoom. We get to present for four minutes, and then take questions from the sharks and audience for an additional four minutes. After all five organizations present, the audience then votes from their computers or other devices. So in essence the MORE Mattie Miracle supporters who tune in and vote, the more likely we may qualify to win the grand prize of $10,000. Please Register for the Zoom event, it is free, and we NEED your vote.  I will be advertising this event everyday starting September 1. 

Take the Plunge: Can you swim with the sharks?

Thursday, September 9 at 8:00 PM EDT

Register Here: bit.ly/TakeThePlunge-MMCF

We Need Your Vote … We Are Taking The Plunge!

Another full day of sorting, organizing and packing. Not to mention running to the house. Thankfully Peter spent the day there, as we had a team of electricians there all day and they return tomorrow. 

Meanwhile I cleaned out my filing cabinet today. I kept most of my Mattie documents but threw away other things, like course evaluations that no longer mean anything to me. It was like it was me in another life. Any case, the document you see here was actually a report highlighting Mattie's results of his intelligence test. He was required to take such a test to get into his private school. I am NOT a big standardized test fan. Mainly because I don't think they truly evaluate a person and the student and life long learner that he/she can be. When I took Mattie to meet with the psychologist, I did not prep him. I did not even let him know that this was a requirement for his school. I basically said he was going to meet with a nice woman, who was going to ask him questions and play mind games with him. By this point Mattie was used to going to a physical and occupational therapist. So sitting and working with women was something he knew how to do very well. It was through this testing that we learned that Mattie scored in the "very superior" range compared to other children his age. To me this explained a lot about him, his personality, and his strong willed nature. 

My first sonogram of Mattie. I remember taking these photos into my child development class and sharing them with my students. I was actually pregnant at the same time as 9/11 (2001). I associate my pregnancy and our national tragedy together. 

This was a story Mattie created in the hospital with Liz, one of the volunteer community artists. Liz loved Mattie and admired his creativity. That day, they created the story of Hairy Harry. 

Hairy Harry is a puppy that I love, whose fur smells like wet dog. His favourite thing is playing with me. We would go to the park, and I would throw the frisbee like a big red pizza, and he would jump to catch it, like a shooting star, for wishes!

Story by Mattie 8/12/09 (by that point we knew Mattie's cancer was terminal--- yet he was still creating!!!!)

Mattie's immunization record. 

Mattie took a swimming class in the summer of 2007. His teacher's name was Margaret. Though it was a group class, Margaret did a great job at working with all the children and though Mattie was cautious, he learned the basics from her. 

I kept this congratulations letter from Mattie's school!

It was quite a day! At 7pm, Peter helped me load the car and we went back out to the house. Desperate times call for a Blizzard at Dairy Queen! 

The state of affairs today! We had three trucks in our driveway, all dealing with our electrical issues. They return tomorrow!