Saturday, October 22, 2016

Saturday, October 22, 2016

Tonight's picture was taken in October of 2006. We took Mattie to ride on the Walkerville Railroad in Maryland. It was a cold day, but beautiful to see the Maryland country side. That day we sat in several different train cars. Some cars were OPEN air (and frigid) and the others were enclosed. Mattie loved moving freely about the train and watching the whole process. Mattie was a train affectionato, and needless to say this experience was a hit that day. 


Quote of the day: A vigorous five-mile walk will do more good for an unhappy but otherwise healthy adult than all the medicine and psychology in the world. ~ Paul Dudley White

We had a massive weather change today. It is real fall weather, which is a night and day difference from our upper 70 degree weather yesterday with high humidity. 

We took Sunny for a walk on Roosevelt Island and he absolutely LOVED it!

I can't make it on a walk without someone telling us how "beautiful" Sunny is! People want to pet him, and Sunny loves meeting other dogs. 

Sunny is checking out a squirrel in the tree! A walk with Sunny is not truly a walk. It is more like a sprint. He moves at a fast clip and his goal is to track down squirrels or rats (we have a ton of them in DC!). 

Sunny and I walking together!

When we arrived home, Sunny went into the living room to greet Indie. I snapped this photo because I just love how both animals want Peter's attention at the same time. It is a real hoot! But what this illustrates is that Sunny and Indie co-exist quite well together. 

Friday, October 21, 2016

Friday, October 21, 2016

Tonight's picture was taken in October of 2006. Mattie was four years old and we took him to Butler's Orchard that day in Maryland. We introduced Mattie to many fall festivals to celebrate the season. The beauty about Butler's Orchard is you get to pick pumpkins in the patch! As you can see Mattie and Peter grabbed a wheelbarrow and were headed to find the perfect pumpkin! They were very successful that year!


Quote of the day: Only the development of compassion and understanding for others can bring us the tranquility and happiness we all seek. ~  Dalai Lama XIV

Well given the Dalai Lama's quote above, I can safely say I lost my compassion and understanding for others today. Why is that? Well take a look at my deck! For TWO YEARS..... not a minute, not a week, not even a month, but for TWO YEARS I have been putting up with the State Department's renovations as they share a common wall with our unit. For the past two springs, the State Department has decided to do work on this shared brick wall without the courtesy of letting us know. As I always say.... they are BAD, BAD neighbors. They truly do not think about the impact of anyone else around them!

I am giving you a retrospective! So you get a feeling for what I have put up with for two years now! This is what our deck looked like in September of 2015. It was like this for over two months with scaffolding. Keep in mind, that even when they weren't on our deck, they were outside our deck for months with debris blowing in. 

Get the picture of what things looked like in September of 2015?

The work that they do in incredibly messy because it involves sand blasting, repointing bricks and then power washing. I can't tell you the amount of debris that has been coming onto our deck EVERY day. Each day I land up cleaning it up otherwise we will cart it inside. Not to mention that by the end of the day we look like we live in a war zone, with powder gray dust, concrete debris and so forth piled everywhere. I took this photo last week. 

But what truly was the last straw, was this hard hat flying from up above down onto our deck a week ago. Any one of us could have been hit by this. That is when I formally complained AGAIN to my building's management. Which was why I had a morning meeting today with the State Department's foreman and my building management. I should also let you know that they drop razor blades onto my deck too. I have picked up several. I am telling you.... a total disregard for other people and their property. 

This was the scene outside Mattie's bedroom window this morning. When I tell you I went into shock, I AM NOT KIDDING. I had a meeting with the foreman about an hour before this scene and the agreement was they were going to clean up their debris and power wash off my deck. That is all I agreed too! So when I saw 20 foot ladders outside, I LOST IT!

They placed my deck items outside in the commons area, and look what they did to my beautiful butterfly ginger lily plant. Which is in a ceramic planter. They literally threw it on its side and bent branches. 

What should have been an hour or two at the most of cleaning, turned into a 7 hour production. Again I got my building manager involved who chewed out the foreman. The foreman reported that more chalk work was needed on the wall, which is why the ladders came out. 

All I know is they better be officially done now. I don't want to see as much as a candy wrapper coming from their direction!

Thursday, October 20, 2016

Thursday, October 20, 2016

This creative piece was designed by our Facebook friend, Tim Beck. He transformed a photo I took of Mattie in September of 2008. It is one of my favorite photos!!! What you see was Mattie posing with a plastic dinosaur that he constructed. It wasn't a simple or fast construction either. It took hours. Mattie had tools, goggles, and was sitting on the hospital floor..... almost like an archaeological dig! All the parts of the dinosaur were embedded in clay. Mattie had to meticulously and carefully excavate each bone from the clay and then assemble them together to form the dinosaur. After the assembly Mattie was physically exhausted. He literally put his head on the table, on top of the dinosaur, and I snapped a photo!! 

Quote of the day: It is easy to love the people far away. It is not always easy to love those close to us…. This is where our love for each other must start. ~ Mother Teresa

Peter and I were invited to Dominion Consulting today to see their new offices and to meet a marketing and PR company called Verasolve. 

Dominion Consulting is our top corporate sponsor, since 2011. We know the President and co-founder of Dominion Consulting because he used to work with Peter at Arthur Andersen. Dan has been very supportive of our work financially and when I reached out to him about sending out press releases, he responded. Not only responded but got us connected to Dominion's PR firm, who has agreed to work with us pro bono this year. We met with Sara Roa (in red) and Debbi Patton (in yellow) from Verasolve, today. They have agreed to a few things for us, but top on my list is they will send out 4-5 press releases for us a year. Sending out reputable press releases is a costly endeavor..... an expenditure, the Foundation isn't willing to sign up for right now. At the moment, we send out free press releases to announce events or achievements, but it doesn't get the same coverage and exposure as when you pay top dollar for the releases. 

What you should know about Dominion is that they are not only a financial sponsor, but they attend the Foundation Walk every year, they have a corporate table at the Walk, and always greet attendees and give out free gifts. Dominion also rings the cow bells, to signal the start of our annual walk! It was wonderful to meet many of the leadership today, to thank them, and to be connected with another set of professionals who can help with Mattie Miracle's community profile and messaging. 

Wednesday, October 19, 2016

Wednesday, October 19, 2016

Tonight's picture was taken in October of 2004. Mattie was two years old and had a much better understanding for Halloween at that point. Mattie wasn't into costumes, because he did not like the texture of things or to feel confined. But sweat suit material was always a hit and we both loved Winnie the Pooh. I think he met a cute Pooh. 

Trick or treating with Mattie was hysterical. He loved the process but NOT the candy. Mattie enjoyed walking door to door, but then after he had a bag full of candy he did not know what to do with it since he despised chocolate. He would hold onto the lollipops, but would happily give the rest of the candy to me and friends. Needless to say other kids loved trick or treating with Mattie as they landed up with twice the amount of candy they collected. When Mattie was battling cancer, he did go trick or treating and after that was over, he came home and sat on the floor to sort the candy. That was a first for him, prior years he never sorted! He then invited people to come take the candy that he sorted into piles. It is a memory I will never forget. 


Quote of the day: Painting is just another way of keeping a diary. ~ Pablo Picasso


At the end of  September, Peter and I were invited to the Association of Pediatric Hematology/Oncology Nurses (APHON) Conference in Indiana. APHON was kind enough to give us a national award for our vision to create psychosocial standards of care. The Association sent me the press release today and several photos from the actual awards luncheon. 

Press Release for APHON Conference:

http://newswise.com/articles/association-of-pediatric-hematology-oncology-nurses-recognizes-honorary-members

Peter and I are pictured with Kathy Ruccione. Kathy is the President of APHON. The irony is we met Kathy a few years ago in Toronto while presenting at another conference. Needless to say, APHON was the FIRST professional organization to endorse the standards and we value their support. 

After Kathy presented us the award, we both got to say a few words. We are a dynamic duo because Peter and I compliment each other. Peter talks about the context of our work and highlights our future objectives in order to achieve national psychosocial standards of care.

Whereas, I talk about the emotion. The emotion of our personal experiences with Mattie's cancer battle and death, and how receiving this award from such a distinguished professional organization means so much to us. Pediatric nurses are NO strangers to us. We lived with them for 14 months of Mattie's care. Nurses are the first responders and provide direct psychosocial care to children and their families. We would have been lost without our nurses. Therefore it is truly an honor to be recognized by the professional group that represents these nurses. 

This evening I went to Paint Nite
with my cancer friend Ilona. Ilona and I met in July of 2013, right after her son died. Now three years later, we are still friends and communicate daily. 

Ilona introduced me to Paint Nite last year and we meet up on occasion to paint. I selected this painting tonight. This is the teacher's painting by the way. 

In any case, I selected this painting because it reminded me of Mattie.... Moon and Pumpkins. I had no idea that it was really a scene out of Tim Burton's Nightmare Before Christmas. I am not a Tim Burton fan at all, but somehow this painting seemed whimsical and not scary to me. 

This painting may seem easy to recreate, but I can assure you it isn't! Dealing with all black is complicated and it truly needs shading to create texture and context. In any case, I would have needed much more than two hours to do this painting justice. I felt rushed. But with that said, I still had a good time and with each Paint Nite that I do, I am learning to take it less seriously and just try to create.  

A photo of Ilona and I with our finished products!!!

I came home with as much black paint on me that as on the canvas! Here is a close up of my final product!

Tuesday, October 18, 2016

Tuesday, October 18, 2016 -- Mattie died 370 weeks ago today.


Tonight's picture was taken in November of 2008. Of course it doesn't look like a photo, and it isn't! Our facebook friend Tim Beck transformed the photo into a painting. The actual photo is below. There are aspects of Mattie in this digital painting, and yet specific features that are Mattie to me are missing. I can't quite explain this. Nonetheless, I loved seeing this creation. Any time I see a Tim creation of Mattie on line, it brings a smile to my face. Because he is helping to keep Mattie alive for us and our community.

The actual photo! It is hard to do Mattie's actual face justice. He was a beautiful boy. 




















Quote of the day: Why does watching a dog be a dog fill one with happiness? ~ Jonathan Safran Foer 

I took Sunny to Alexandria today to walk with friends. He had a great time. He met my friend Tina's dog and the boys really enjoyed walking together. Sunny has gotten to know my friend Ann, and moves about freely in her home. 

In fact, Sunny loves visiting Alexandria because there are a ton of squirrels there. His passion!

Ann captured us walking our boys. This was Sunny's first meeting with Max. They did very well together and it was such a glorious weather day, there was no better way to spend the day than outside, in fresh air, and walking a dog. 

Ann and Tina live in a beautiful neighborhood, right near Mattie's school. However, the neighborhood has slight hills. Prior to getting Sunny, I would get winded walking the hills. I literally couldn't talk and walk at the same time. However, since getting Sunny, and walking 5-7 miles a day, my stamina has totally changed. I haven't noticed it until today. 

I would say that Sunny makes me happier and forces me to take better care of myself. Which means working less and moving more. 

Monday, October 17, 2016

Monday, October 17, 2016

Tonight's picture was taken in 2003. I am seeing this photo for the FIRST time. One of my former students, who was Mattie's first babysitter, sent this to me today in a text message. Needless to say it was a surprise. I always think that I have seen every possible photo of Mattie, but clearly that isn't the case. It meant a lot to me that she found this photo and decided to send it to me.  

You may notice that Mattie was squirming in my arms. That was NOT unusual for Mattie. He truly did not like to be confined and preferred being in control. Nonetheless, this photo was so appreciated today because it captures the essence of Mattie. 

Quote of the day: The moon is a loyal companion. It never leaves. It’s always there, watching, steadfast, knowing us in our light and dark moments, changing forever just as we do. Every day it’s a different version of itself. Sometimes weak and wan, sometimes strong and full of light. The moon understands what it means to be human. ~ Tahereh Mafi

Last night, through our front door, Peter captured this wonderfully full Mattie Moon. In fact, several people emailed me last night to go look at the moon. I am glad they did. 

There are many people over the course of time who have read this blog and have gotten to know Mattie through my words. A majority of my readers have never actually met Mattie. Yet for the most part, most of them know that Mattie's name in preschool was Mattie Moon. His preschool assigned a symbol to each child. The symbol had to start with the same letter as the child's name. Even when Mattie completed preschool, I always called him our Mattie Moon. Naturally now that Mattie is no longer with us, we look to the moon and always think of our boy and our connection. 

Over the weekend, the first large candy donation came in from the Luther family. One of the Luther family members works for Mars, the maker of M&Ms. So literally there were boxes and boxes of candy and adorable M&M dispensers. 

They were delivered to MedStar Georgetown University Hospital today, because I figured the candy could be used for Halloween. The Hospital hosts a LARGE Halloween party, in which the kids go trick or treating around the Hospital. This was only round one, because Georgetown will get a year's supply of candy post-Halloween. Holding onto this large donation until November made no sense, especially when tons of other candy will flow in. 

I had lunch today with my Freshman year college roommate, Leslie. After all these years, Leslie and I are still connected, and she and her family support the Foundation.

At lunch Leslie surprised me with a gift for Sunny and a gift for Indie. Both gifts were a complete hit!!!

Leslie got Sunny a large and colorful braided rope. It can be used for fetching, throwing, and dug of war. Literally as soon as Peter got home tonight, they started playing. Sunny just LOVES his new toy and was very animated and excited. 

Sunny sitting on his bed with his new toy after playing with Peter. 

Sunday, October 16, 2016

Sunday, October 16, 2016


Tonight's picture was taken in October of 2005. Mattie was three years old and enjoying the art of foot painting. This wasn't exactly a clean endeavor, but Mattie absolutely loved the experience. The beauty of Mattie was he was a neat fellow. So though he would make a mess with his feet and on paper, he did not run around our home with painted feet. He just seemed to understand that this was off limits. Mattie created some beautiful things with his feet. An example is below!

Mattie's feet!

















Quote of the day: What sunshine is to flowers, smiles are to humanity. These are but trifles, to be sure; but scattered along life's pathway, the good they do is inconceivable. ~ Joseph Addison

Can you believe the first delivery of Post-Halloween candy happened today?! Of course this is way before Halloween. About 6 bins of candy to be exact! We are headed to have another successful candy drive at this rate!

We took Sunny for a walk today on the National Mall. It was a beautiful day in the high 70s, and one of Sunny's favorite locations to walk is the Mall. Mainly because of all the green space with trees, FILLED with squirrels! Sunny loves tracking down squirrels and chasing them up trees. I truly believe it is his herding instincts coming into play. But it isn't only physical exercise. Sunny studies where the squirrels are and predicts which direction they will be moving!

It is BACK!!! I absolutely detest graffiti. I find NO redeeming value in it. This year more than ever, I am noticing more instability around us and an overwhelming amount of graffiti. The graffiti on this wall was just cleaned up in 
June of 2016. I worked for months with the DC Department of Works to get it removed. I can't believe four months later it is back with a vengeance! 

This is what the wall looked like in February 2016. When I compare this photo with the one above, which I took today, it looks like the same handwriting and shapes. 

I photographed it and reported it to the Department of Works. To me this is vial, it defaces public property and it shows a true depravity and disregard for laws and other peoples' space.