Saturday, November 13, 2021

Saturday, November 13, 2021

Tonight's picture was taken a few days before Peter's birthday. We celebrated Peter's birthday early because on November 12, 2008, Mattie was having his second limb salvaging surgery. That surgery was much more extensive than his first surgery, since it involved his left arm, left wrist, and right leg. Peter's birthday is today, November 13th, but his birthday in 2008, was a nightmare. Mattie was dealing with pain and all sorts of issues from such an extensive surgery. As you can see Mattie did make Peter a model magic birthday cake, which included candles. To this day, we still have this cake on display in our home.

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

• Number of people diagnosed with the virus: 47,029,901
• Number of people who died from the virus: 762,816

I had a bad night of sleep. I was up at 3am and was tossing and turning. I think all the stress is getting to me. By 6am I got up officially, because our electrician was coming by at 8am. He was with us for several hours trying to figure out why lights wouldn't go on. Naturally it was because of faulty wiring. All these issues I believe have now been corrected. But it never ends here. 

This is the last pile of snack and candy! It will be delivered to Children's Hospital at Sinai (Baltimore, MD) on Monday. I would like to say there is a magical elf who moves these boxes and items around, packs the car, and delivers them. But Peter and I are the elves. I would have to say between this item drive, the Farm, and my parent's move, I am wiped out. With no end in sight. 

Peter has taken it upon himself to install outdoor lights all over the property. He actually has the skills to do this, because he did this at my parents home multiple times. But it is very labor intensive and time consuming. Peter juggles these tasks between lots of work demands. Meanwhile look at Sunny! While Peter is working, Sunny is asleep on the job. 

Sunset on the Farm. 

We haven't even had Thanksgiving yet, but I am already trying to contend with Christmas. Peter and I went shopping for his parents a few weeks ago and last night, I got paper out to wrap and label items. The reason I knew I had to do this now is because once my parents arrive, I think things will be too chaotic for me to focus on gifts, much less putting them in the mail. While juggling that, I am also trying to juggle our Foundation's end of year mass mailing. To me this is like the perfect storm. 

Peter was outside by the pool today, removing leaves. Our pool hasn't been covered yet, because the cover is no longer on the property. Therefore we had to order a whole new cover. I won't tell you how much that is, because the way the former owner designed the pool, the cover has to be custom. Naturally! Nothing here has gone right. 

While Peter was cleaning the leaves out of the pool, he text messaged me to come outside. He wanted me to see that a live snake was in the pool. For those of you who don't know this, I am VERY scared of snakes. I don't like even garden snakes. Meanwhile Peter and Sunny were fascinated. Virginia has one poisonous snake, the copperhead. The baby copperhead and the Dekay's Brownsnake can look alike. Fortunately this is the Dekay's Brownsnake and not poisonous. Nonetheless, I asked Peter to remove it from the property!

I was too overwhelmed by the snake to think straight, but Peter feels this snake is a sign from Mattie, for his birthday! I wouldn't put this passed Mattie, especially since Mattie loved all creepy crawly things. As usual, I am sure Mattie is getting a chuckle today out of my reaction to the snake. Happy birthday Peter...... Mattie wasn't going to let this day pass without letting you know he is with you. 

Friday, November 12, 2021

Friday, November 12, 2021

Tonight's picture was taken in November of 2006, around the time of Peter's birthday. Mattie was four years old and we most likely were going to take Peter out for lunch. I like how the boys got dressed up for the occasion and were in matching Fall colors. Mattie enjoyed celebrating Peter's birthday and always insisted on making him a birthday cake. Here's the ironic part about this, before Mattie made the request to bake a cake for Peter, I really did not know Peter's favorite type of cake. Mainly because Peter isn't a sweets person! Since Mattie wanted to make sure Peter had a cake, we learned that Peter LOVES lemon cake. 

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

• Number of people diagnosed with the virus: 46,931,055
• Number of people who died from the virus: 760,970

This morning we had a visit from Mary. Mary coordinates community engagement at FH Furr. We use FH Furr for all our electrical, plumbing, heating, and HVAC needs. In many ways the company has been living at our house since June, because of the significant repairs that needed to be done. Over time, all the people interacting with us got to know about Mattie Miracle. So Mary dropped off two boxes filled with snack and toiletry items for our Foundation's Carts! I love FH Furr and I appreciate a company that stands behind a cause that is so important to us. 

A candy delivery was made to MedStar Georgetown University Hospital (Mattie's hospital) today. Pictured with our candy is Jessica, one of their amazing child life specialists. Because my car was loaded down with snacks yesterday, there was no way I could fit the candy. So that was delivered today. 

We also took on hanging photographs in our bedroom today. I have been at this project for weeks now. Since I had to pick the photos and then get them in the frames. Though I used these frames in our townhouse in DC, I decided to replace all the old photos. Every single photo in our room was taken by Peter, and it reminds us of places we shared together.

One wall features natural beauty and the other beautiful landscapes with a body of water. 

In my closet are photographs of the Grand Canyon, Mt. Vesuvius in Italy, and the red rocks of Sedona. 

Peter has this boat on display in his office. Honestly I don't even remember this boat, as we did not have it out in the townhouse. Apparently Mattie made this boat for Peter for Father's Day in 2009 (our last Father's Day with him). 

Thursday, November 11, 2021

Thursday, November 11, 2021

Tonight's picture was taken in November of 2007. Mattie was five years old and that Thanksgiving we took him to Boston to visit Peter's family. This was Mattie's first experience raking leaves and then jumping into them! You can see him laughing as he was surrounded by his cousins. 

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

• Number of people diagnosed with the virus: 46,833,116
• Number of people who died from the virus: 759,568

I drove to Mattie's hospital today where he received treatment and made a very large snack and candy donation. This is only ONE of the carts we donated. By the time we were finished unpacking the car, we had two large carts filled, and a third smaller cart. Keep in mind that Mattie Miracle purchased nothing you see here. Everything was donated to us from the community. It has been an extraordinary turnout this year. 

Literally this is what today's car load looked it. It was jammed packed and it made driving challenging. 

I literally couldn't see out of the rear view mirror, which I don't really like. 

Get the picture? After my drop off, I went to Mattie's school to pick up the last bundle of candy donations. I am expecting another larger sized donation tomorrow from our plumbing, heating, and HVAC company. But it is my hope after that, that I am done, because my last delivery is on Monday, at Children's Hospital at Sinai. I am working down to the wire, as I fly to Los Angeles on Thursday the 18th. 

Wednesday, November 10, 2021

Wednesday, November 10, 2021

Tonight's picture was taken in November of 2007. Mattie was five years old and that weekend we went for a walk on Roosevelt Island. A special place for our family. As you can see, Mattie found a gigantic leaf and was walking along with it. Of course that leaf came home with us and was added to his natural find collection. After Mattie died, Peter and I both had trouble sleeping. Peter would literally get to the Island at 5 or 6am and walk it. It was his ritual, and we both needed something to motivate us to get up, function, and interact with the world in some way. 

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

• Number of people diagnosed with the virus: 46,763,694
• Number of people who died from the virus: 758,592

I was out of the house most of the day! Though I was running around and in the car for most of it, I came back with a better mind set. Leaving the "funny farm" was a healthy thing for me. I came back not as hyper and frenetic. 

I had back to back doctors appointments today. In between appointments I sat outside and had frozen yogurt. It was a wonderful break, until my peace was interrupted by a rat who scurried passed me. I wasn't sure if that was a sign.... a sign reminding me don't get too comfortable. 

I said good-bye to my ophthalmologist last year. Or I should say I gave him and his practice walking papers. At our last appointment together I learned he diagnosed me with narrow angle glaucoma years before. Yet NEVER told me about it. When I found out, I was livid. Livid because I like to know what's going on with my own body, and I didn't feel comfortable signing up for laser treatment to put a hole in my eye to drain fluid. If he had communicated with me along the way, I wouldn't have been shocked when he prescribed surgery. It was at that point, I found a new doctor. 

My new doctor assesses me every six months to see if I have any changes in eye pressure. My eyes were dilated twice today and I was assessed. I got a good report, and so far no pressure changes. I am stable. In the appointment the doctor asked me what is new. I told him I bought a house and he asked why. So I mentioned that I am going to California to pack my parents up and bring them East to live with us. My doctor's demeanor changed immediately. I clearly struck a chord. We continued chatting and I learned that he lost both of his parents to cancer and we had a lot in common. Amazing how one simple question (what is new?) can lead to so much information and a connection!

Driving around town with dilated eyes was something else, but I managed. When I got home, Peter packed the car for a delivery to MedStar Georgetown tomorrow. Thank goodness he is skilled spatially because if it was up to me, I would be lucky to get half of the items in the car.

Get the picture!

Fortunately going to Georgetown is something I am very familiar with, because I really do not like driving without having access to my rear view mirror. 

Tuesday, November 9, 2021

Tuesday, November 9, 2021 -- Mattie died 632 weeks ago today. 

Tonight's picture was taken on Veteran's Day of 2007. Mattie was five years old and that day we walked down to Constitution Avenue from our townhouse in DC. The beauty of living in the heart of the city, you could easily walk to see parades as well as easily leave to head home. The facial expression on Mattie's face I knew well! This was the look I got whenever he was busy doing something and really did not want to stop for a photo. Yet he was good enough to comply! By that point he was used to my need for photo documentation. 

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

• Number of people diagnosed with the virus: 46,661,243
• Number of people who died from the virus: 756,574

I am up to my ears in candy and snacks! Last night Peter packed our car, so I could deliver items to the National Institutes of Health. Fortunately Peter understands spatial relations, because I could never have packed the car so well and got everything to fit. 

What looked good last night, wasn't great for me by day, when I had to drive. As I couldn't see out of my rear view mirror. Which was disturbing to me, especially driving on highways. 

Get the idea of what was behind me?

Getting onto the NIH campus is challenging on a good day. Today I arrived, at the usual visitor's entrance, just to find that the entrance was closed due to construction. I was in a panic, because I had NO idea how to get onto the campus using any other entrance. So I contacted our friend Lori (who you see in red) and asked her what to do. 

So today I entered the campus through the deliveries entrance. With all the trucks! It was an experience. I went through the same procedure of getting out of the car, the car got inspected, while I had to register with the guards and go through a metal detector.

I finally got to the NIH Clinical Center and fortunately a team came out to help and brought carts! 

The team posing with all the items! They couldn't get over that all these wonderful things were donated by the community! As I always say, we have the best supporters. 

When I got home, I started going through more items and started a stack for MedStar Georgetown University Hospital, which I am donating to on Thursday. Wondering what I am doing in a box? Well this enormous box was delivered to us today and it was filled with Cheez Itz! It was so heavy, I couldn't even lift it!

Monday, November 8, 2021

Monday, November 8, 2021

Tonight's picture was taken on November 7 of 2007. Mattie was five years old and in kindergarten. That day, he lost a tooth in the middle of writer's workshop. Which was a creative writing component of his kindergarten lessons. Mattie wasn't always wild about writer's workshop, mainly because he was still learning to read and write. However, what came easily to Mattie was the creative story telling and the content. Which from my opinion are much harder to teach! The mechanics come in time. In any case, during writer's workshop, out popped Mattie's tooth. His teacher helped Mattie save it so he could bring it home for the tooth fairy. The tooth fairy was not just an ordinary gal at our home. Mattie always wrote a letter to her (and left it by his bedside), and he did not ask for money. He wanted something tangible for his tooth, and it varied. One time he asked the fairy for a necklace made out of pasta. Got to love him and that pearly white fairy always complied!

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

• Number of people diagnosed with the virus: 46,574,414
• Number of people who died from the virus: 755,162

Another day of chores here! This week I begin deliveries of candy and items around town. In the past we have had to rent a Uhaul because of the sheer volume. I am trying to avoid doing that this year, specifically because Peter is unable to help me by day.

So I started a stack of items in the garage for the National Institutes of Health's (NIH) Cart. These things have to be loaded in the car for transportation tomorrow. If you have never been to NIH, it is an experience. In the way it is like going to the airport. You have to allow extra time because you can't just waltz in. You and your car have to go through screening. Literally you leave your car, you have to show ID, you have to be entered into their computer system, and go through a metal detector. Meanwhile, your car and its contents get inspected. In the past when I had bags and bags of candy, the inspectors always loved it, because I made sure I could leave them some. Now I am coming in with boxes, so who knows how that will go over. My appointment to meet people there is at 11am, and I will be leaving home at 9:30am or earlier, because of the challenges of commuting and getting onto the campus. 

I did a thorough cleaning inside our car today. Wiping down surfaces and vacuuming. We aren't required to do this, but to me it made sense given that we sometimes have Sunny in the car and certainly because of the big move. The car hauled a lot of stuff from DC to Virginia.

I also called about getting Sunny back on an anti-inflammatory. He still seems to have trouble getting up from a seated position and does limp for the first ten minutes of our walks. As if he has arthritis, but he doesn't! So I am hoping getting back on the meds will help him heal better from surgery. 

Meanwhile the house saga doesn't end. We are back to having electrical issues. Now some of the lights won't go on at all. It isn't a breaker issue either. I have been spoiled for 27 years in Washington, DC, where I would call our front desk and within minutes someone would be at our door, willing to help, and usually resolved the problem that day. Now is another story. I am full time caregiver to Sunny, who is rehabbing, and a full-time (+++++) caregiver of the farm. Yesterday my friend asked me why I call the house, "the farm." Well ironically the address has Farm in it, which is convenient, but I am calling it "the farm," because I feel like I am living in a funny farm. Non-stop chaos, which I find debilitating physically and mentally. 

Sunday, November 7, 2021

Sunday, November 7, 2021

Tonight's picture was taken in November of 2003. Mattie was one and half years old and we took him pumpkin picking at a Fall festival. Mattie just gravitated to pumpkins and things that were orange. No surprise that his Foundation color is orange! Mattie was the one that introduced me to eating pumpkin, as prior to him I truly did not like the taste. But he loved it and therefore over time, I too grew to appreciate this cute orange fruit.

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

• Number of people diagnosed with the virus: 46,480,822
• Number of people who died from the virus: 754,326

I am trying to get as much done with the house before I leave for Los Angeles in a few weeks. Today we started to hang up some of our photographs in our bedroom. Seems fitting that we have a butterfly, the sun, and the moon closest to us. There are 14 other photographs that Peter has taken that arrived in the mail today. So next weekend, hopefully we can get them up on the walls. I figure why frame art, when Peter has captured so many beautiful memories on camera.

This is the current look of our family room. If you saw what this room used to look like, you'd see the huge transformation. Starting with the wall over the fireplace. There used to be a huge mirror almost up to the ceiling on that wall and it was surrounded by very old and cheap looking sconces that held candles! They are all gone! Fresh paint and re-staining the floors have made a big difference. 

This is our front hallway. I have tried to bring a little fall into the house. The ledge above our front door has a fall bough and candles that operate off of batteries which are controlled by a remote control. To me this is very neat. Sunflowers are important and meaningful to me, so when I saw these flowers at Michael's I knew they were meant for the house. 

We are having friends over for dinner tonight, and I am trying to give the table a fall look. 

Tonight's dinner is beef bourguignon. This is a recipe that I just love, but it is time consuming to make. 

Dessert is a pumpkin cheesecake! Mattie would love it and approve.