Saturday, May 2, 2020

Saturday, May 2, 2020

Tonight's picture was taken in May of 2007. We took Mattie to Andrews Air Force Base for their annual air show. This was our first and last air show together. Mattie loved cars, planes, trains, and boats. Basically anything that moved. It fascinated him. Mattie was truly in awe of the planes on display at the air base. It was a very hands on experience, as Mattie got to walk through many of the aircraft, meet members of the military and even see a Thunderbirds air show. It was a day to remember.







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

• Number of people diagnosed with the virus: 1,126,021
• Number of people who died from the virus: 66,045

The Washington National Mall has been our therapy for the last 40+ days. Each day we walk around it and get to see signs of life and hope. Yesterday was the truck rally and today was an incredible fly over by the Navy's Blue Angels and the Air Force's Thunderbirds. 

There were signs of life all around us. People walking about, and clearly illustrating that social distancing is possible in a city. We can function to some extent without having to be shut in at home. Today's air tribute was about first responders, but in essence what it did for all of us on the National Mall, was to instill hope...... which is vital for the human spirit and survival. 

These jets flew over New York City on Tuesday in a tribute to the medical personnel, first responders and other essential workers involved in fighting the coronavirus pandemic. They then moved to 
Trenton, New Jersey, and Philadelphia. Today was the National Capital Region's opportunity to see this glorious salute to those working on the front line of the COVID-19 response. A flyover right above the Lincoln Memorial. 

Blue Angels on the left and the Thunderbirds on the right. 

They flew over us four different times! 
















The video Peter captured during the fourth and final flyover..............................

Friday, May 1, 2020

Friday, May 1, 2020

Tonight's picture was taken in May of 2007. Mattie received this "got lobster" t-shirt as a gift. So he decided to put it on and mimic his impression of a lobster. The irony was, I don't think Mattie ever saw a live lobster and he certainly never ate one. Yet in usual Mattie style, I think the photo was priceless. It spoke to his energy and joy for life and his desire to be a part of the fun.  









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

• number of people diagnosed with the virus: 1,100,197
• number of people who died from the virus: 64,600

Sunny was more like himself today! Which was a wonderful sight to see, since yesterday he refused to walk and appeared to be in pain. Sunny loves his walks and today he seemed happy to be outside and to explore. Along our walking journey we passed this momma duck and her ducklings. A sight that Mattie would have gone wild over. As Mattie always felt this sight reminded him of me and him. 

Even the turtles were out, basking in the sunshine!

We couldn't miss this on our walk!! There was a protest near the White House. Constitution Avenue was lined with big rigs! It was a sight to see. The rally was  called, "May Day." Which is clever as protest organizers adopted the well-known international radio distress signal. Not to mention that today is May 1st.

Literally these big rigs blew their horns CONTINUOUSLY for thirty minutes. It was so loud, it sounded like many trains passing through. 

Organizers were hoping to raise awareness of issues faced by small-business truckers, most of whom own their trucks. The most-expressed complaint is low freight rates, usually accompanied by complaints that brokers are paying truckers too little, keeping excessive amounts of the revenue paid to them by shippers.

Other complaints were that drivers don’t have access to masks, gloves and sanitizer despite being categorized as essential workers and that the government hasn’t done enough to ensure adequate available food and parking.



Want to hear what it sounded like at the Rally, then check this out.......

https://www.facebook.com/fox5dc/videos/719537222125623/

Thursday, April 30, 2020

Thursday, April 30, 2020

Tonight's picture was taken in May of 2008 (two months before he was diagnosed with cancer). That weekend we took Mattie to Calvert Cliffs Park in Maryland. This is a very unique nature trail, because it is about a mile of walking in the woods. The trail leads you to the Chesapeake Bay. This sandy beach is known for its sharks teeth. You have to be patient and do a lot of digging, but Mattie loved the adventure and never left empty handed. I have all the sharks teeth he collected over the years. Needless to say after Mattie died, we never ventured back to this park. 

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

• number of people who were diagnosed with the virus: 1,068,696
• number of people who died from the virus: 62,870

Prior to COVID-19, I never heard of Zoom. But now, I think EVERYONE knows they are an American communications technology company headquartered in San Jose, California. They provide videotelephony and online chat services. It is basically how the majority of us do conference calls during the pandemic. Except it isn't only an audio conference call, there is a video component so we can see each other and we can even share our computer screens for presentations. Today, we had a Zoom call with a portion of our Walk planning committee. We are lucky that the committee is still energized and wants to help us raise funds and build awareness. Their support, helps us brainstorm, strategize, and certainly get closer to meeting our Walk goal. 

Since the Walk is virtual this year, our objective is a bit different. We feel this is the perfect time to build awareness for the Foundation around the United States. Our event is no longer confined to Northern Virginia. Therefore, anyone can participate for just $25. Learn more at www.mmcfwalk.

Our campaign this year is two fold: 1) Come walk virtually with us, get some fresh air (while socially distancing), and support a good cause. 2) Help us get at least one person from every state to participate in our event (by registering, being a sponsor, making a donation, or purchasing raffle tickets). This map is helping us track participants. As of now (though we need to update the map), we have 23 states participating in our event! Amazing! 

Some current walk facts:

1. 111 people registered for the Walk
2. 23 States Participating
3. 12 Corporate Sponsors and 11 Individual Sponsors
4. So far we have raised $63,000
5. Our On-Line Raffle has sold $1,200 worth of tickets
6. There are 125 individual donations 
7. 11 Walk teams

Meanwhile it was an awful weather day and Sunny wasn't happy. He practically refused to walk all day today. Which is NOT like Sunny. Perhaps the rain and dampness is affecting his knee differently now?! We don't know, but we even tried putting him in his raincoat. It did not help, so we suspect he is in pain. He sees the doctor next week as well as meets his PT on Tuesday. We spoke to the PT today and she sounded like Julie Andrews... which automatically made me feel better. 

Wednesday, April 29, 2020

Wednesday, April 29, 2020

Tonight's picture was taken in May of 2008. This was a classic May photo in our home! Why? Because it was tent moth caterpillar season. Mattie would bring many caterpillars home from school in Alexandria, VA. Then we would put the caterpillars in jars, with holes on top for air. Mattie and I would feed the caterpillars oak leaves (the only thing they seemed to like), replenish leaves every couple of days, and also clean out the jars on a regular basis. Caterpillars could eat and eat, and therefore, with eating came the by products. Needless to say, we fed them until they created their cocoons. Then after about two weeks the moths emerged and we would have a releasing party on our deck. Mattie had a natural curiosity to learn about nature and the scientific process of metamorphosis. At first I wasn't thrilled with these caterpillars invading our home, but I came to appreciate the spring activity and watching Mattie learn from the process. 


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

• number of people diagnosed with the virus: 1,036,652
• number of people who died from the virus: 60,475

Peter and I went for a 5 mile walk today in Alexandria, VA. We rarely leave DC anymore, but on occasion we venture out. It was a good change of scenery. 

Mattie's school designed lawn signs for all the graduating seniors. The school even made a sign for Mattie. I picked our sign up today. At first I was going to just put it in the closet, but then I had a change of heart. I asked Peter to put it in our flower pots. Ironically the windows you see here are to Mattie's bedroom. Which is now my office. If Mattie were alive, and we still living here, he would be able to look out his window and see his sign on display. 

A close up of the sign! Most of the people who live around us now probably won't understand the sign. After all, they never see us with a child and they did not know Mattie. For them the sign is meaningless. For us, the sign is bittersweet, bordering on painful. 

To be honest, I am fine with graduation being canceled, and I fine that graduation parties can't happen and I am also fine not hearing about Mattie's class and their college decisions. Probably sounds mean or selfish, but it is my reality. A reality I share with other bereaved moms. So many bereaved moms in the childhood cancer community are saying..... 'now (because of COVID-19) others understand how I really feel.' As COVID-19 is showing the rest of the world what it is like to live with missed opportunities, health anxieties, and uncertain futures. 

Meanwhile, Peter and I are tracking the number of states participating in the Mattie Miracle Virtual Walk. Participation can mean through registration, donations, or purchasing raffle tickets. As of today, we have 20 states participating.
Our goal is to get all 50 states represented! 

Tuesday, April 28, 2020

Tuesday, April 28, 2020 -- Mattie died 552 weeks ago today.

Tonight's picture was taken in May of 2008. That day, Mattie's school was honoring grandparents. Grandparents were invited to campus for a lovely brunch, a concert, and then to meet the teachers and tour the classrooms. I decided to volunteer that day, so I had the opportunity to participate. Thank goodness I did, because it was the only grandparents day our family got. 


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

• number of people diagnosed with the virus: 1,012,517
• number of people who died from the virus: 58,355

It was another day where I wonder what on earth happened to the time. It is 11pm, and I am still working on the Mattie Miracle Walk. I really thought it would be easier this year since the Walk is virtual. But somehow I am finding it is anything but easy. I guess doing something for the first time is always hard and the trouble is always in the details. For more details about our Walk, go to
www.mmcfwalk.com. More specifics are below.

Here's How it Will Work This Year:

• There is no physical event. The Walk and raffle are virtual.
• Everyone registers as a virtual walker (individual or team). 
• Registered participants will compete for top fundraising awards.
• You can sponsor, donate, and purchase raffle tickets on-line. 
• Top four registered walkers with the most steps taken on May 17th will receive a prize.

Prizes:

• 1st Prize (kids/teens): Nintendo Switch Lite  or 1st Prize (adults): Port City Tasting for 4 & Gifts
• 2nd Prize: Air Pods Pro
• 3rd Prize: Apple TV
• 4th Prize: $50 iTunes Gift Card

** ALL AWARDS, PRIZES, & RAFFLE ITEMS WILL BE MAILED TO RECIPIENTS. 

On May 17th:

• Walkers track their steps (at home, outside, in your backyard, etc) using a step counter/activity tracker.
• Post videos and photos showing your Mattie Miracle spirit to our social media pages - be sure to use #MMCFWALK
• The top four registered walkers with the greatest number of steps will win a prize.
• Send or Post a photo of your total step count by noon (in your time zone) to Mattie Miracle's social media accounts or email us (admin@mattiemiracle.com).

Mattie Miracle's Social Media - Be Sure to Like/Follow us
Facebook
Twitter
Instagram

Virtual Schedule for May 17th:

12:01am - 12:00pm (your time zone)

• Track your steps

9:45am EDT   

• Greetings from the Co-founders on Facebook Live

10am-12pm   (your time zone)

• Post a photo/video showing your Mattie Miracle spirit. Use #MMCFWALK

12:00pm  (your time zone)

• Take a snapshot of tracked steps and post it on Mattie Miracle's social media accounts or email us (admin@mattiemiracle.com).  

12:30pm  EDT    

• Raffle Winners Announced on Facebook Live

9:00am  EDT (May 18th)

• Top 4 Walkers with the Most Steps Announced on Facebook

The Virtual Walk Proceeds Support the: 

• Salary of a full-time child life professional
• Funding of psychosocial implementation research grants
• Stocking our FREE Snack & Item Carts at local hospitals
• Establishment of Coronavirus Family Relief Grants to support children with cancer and their families at Children's Hospital at Sinai (Baltimore, MD)

Monday, April 27, 2020

Monday, April 27, 2020

Tonight's picture was taken in May of 2008. I remember this trip on the Potomac River vividly. It was a Friday afternoon, and Peter got home early from work. So we all walked down to the water front and boarded the "Matthew Hayes." It took us for a ride around the river and since Mattie was a big boat fan, we figured he would love it. Which he did. Now whenever I see the Matthew Hayes in the harbor, I reflect back on this very day. 








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

• number of people diagnosed with the virus: 985,443
• number of people who died from the virus: 55,952

We have a routine each day that involves walking Sunny and then we take a separate long walk around the National Mall. These are the things that provide structure to our days. After which, I some how get lost on the computer. Answering emails and doing Foundation work. In addition to what I do on a regular basis, I got involved in a research study in Seattle. Which asked me to recruit childhood cancer families to the study. A study to highlight the lived experience of childhood cancer families during the Coronavirus. 

All I know is what should appear a simple ask, has taken up a large amount of my time. As screening people for a study is time consuming and can be a logistical nightmare to schedule when the researcher and participants are on different time zones. I literally get facebook messages, emails, and even text messages from people about these interviews. I thought once I got these folks scheduled, my commitment would be done. But apparently I learned this week that this might not be the case. I believe in supporting research but to a point. Especially when it isn't a study I developed or am funding! 

Sunday, April 26, 2020

Sunday, April 26, 2020

Tonight's picture was taken in May of 2008. Only two months before Mattie was diagnosed with cancer. To me he looked like the picture of health! There was NO warning signs. Mattie loved being outside and as soon as the calendar turned to spring, outside he'd go. He loved found objects at home, and used them to build highways and pathways for all his toy cars. Seeing this photo make me chuckle, because I would not have thought to use my plastic flower boxes and tomato plant cages to design anything. 


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

• the number of people diagnosed with the virus: 963,168
• the number of people who died from the virus: 54,614

It was a full day of chores around our home. After taking a 5 mile walk around the National Mall, we came home and cleaned off our deck and planters from the winter. We were out there for hours. 

Not only did we sweep leaves and other debris, and weed, but we literally used clorox and scrubbed the deck clean. It is back to being ivory. You should have seen it before we cleaned. The deck looked grey. Now if we could only buy plants and get our garden going!