Saturday, February 24, 2018

Saturday, February 24, 2018

Tonight's picture was taken on March 2005. Mattie was about three years old here. That weekend we took him to Butler's Orchard in Maryland. Every spring, this farm hosts Bunnyland, which is like a spring family festival. There are all sorts of activities for children from an Easter Egg hunt to tractor rides. As you can see Mattie was intrigued by this John Deere toy tractor! Weekends with Mattie were always physically busy, as Mattie preferred activities and fresh air. 


Quote of the day: You can't get there by bus, only by hard work and risk and by not quite knowing what you're doing. What you'll discover will be wonderful. What you'll discover will be yourself. ~ Alan Alda


This is another working weekend for Peter and me. As the Foundation newsletter for February had to be generated, the Mattie Miracle website needed to be updated, and we are also working on a grant request. In the midst of doing all of this, I am working hard at solidifying all of our vendors for the Mattie Miracle Walk on May 20th. For our returning vendors, I contact them in December and alert them to save the date in May. But each year, we try to add new activities to the Walk. Coming up with ideas is not always easy and even if I come up with an idea, we may not be able to afford it or be allowed to host it on the School's campus. 

So far, I have secured two new vendors this year. One is a professional caricaturist and the other is Reptiles Alive. In order to find reputable vendors, I use an on-line site called Gigmasters. It is thanks to Gigmasters, that I found our DJ and face painter years ago. Gigmasters generates a contract and stands behind their recommendations, which is lovely! It makes it much easier to locate service providers for events! Gigmasters is also free of a charge to the user! No one told me about this company, as I found it doing my own research. 

Last night I put a request in through Gigmasters for a caricaturist. This is not an activity we have ever had at the Walk. I read all the recommended vendors and then selected the ones that interested me. This morning I received an email from Dylan and he was moved by my request and the reason we are raising money. So much so that he is waving his fee altogether. Check out his website: http://www.dylandrawsstuff.com/

Now regarding Reptiles Alive! It is a company that provides colorful exotic live animal shows presented by fun and friendly wildlife educators. I requested that they do a show at this year's Walk! I am very familiar with them since in June of 2009, Mattie's support community invited Reptiles Alive to Mattie's 7th birthday party. His last birthday with us. This photo was taken at the party and you can see Mattie did not mind getting up close and personal with this snake!

When I wrote to the Reptiles Alive folks, I told them about Mattie and the party they participated at in 2009. The company decided to provide at the Walk a free meet and greet for participants, after the animal show. Meeting the animals is the fun part, where children and parents can interact personally with the animals under the supervision of the educator. Check out their website: http://www.reptilesalive.com/

Friday, February 23, 2018

Friday, February 23, 2018

Tonight's picture was taken in May of 2007. Mattie was five years old and Super Mattie was helping me with laundry. Not only did our cart hold laundry, but it also held Mattie. I remember for at least a year after Mattie died, doing laundry was truly disturbing to me. Because there were no more Mattie articles to clean and fold. It was very disorienting, especially since Mattie used to come with me to the laundry room in our complex. I still miss my side kick, who made laundry day extra exciting. As typically Mattie did not walk to the laundry room, but would either ride his bicycle, scooter, or you name it! Life with Mattie wasn't boring!



Quote of the day: Different roads sometimes lead to the same castle. ~  George R.R. Martin


I had an all day licensure board meeting today, we started at 10am and we did not finish until 5:30pm. Needless to say I am wiped out now, and don't really want to hear one more thought or perspective. Tonight's quote has me laughing!

At today's meeting practically every board member had a difference of opinion. None of us are right or wrong, but in order to move forward on certain decisions we need a majority vote. We discussed one topic close to 90 minutes, after which I decided we needed to move on and will pick up on this topic next month! 

I had great plans to accomplish Foundation work today when I got home. It never happened. Signing off for today. 

Thursday, February 22, 2018

Thursday, February 22, 2018

Tonight's picture was taken in February 2006. Mattie was almost four years old and as you can see was posing for a photo next to a flower pot. Peter and I won this flower pot at Mattie's preschool auction. What you may not be able to see is that the paintings on the side of the pot were thumb prints of every child in the classroom. Mattie was very happy that we won this item, as he was proud to contribute to this class project!


Quote of the day: Take care of all your memories. For you cannot relive them. ~ Bob Dylan


Last night Peter and I went out to dinner with our friends. Specifically they wanted to get together because they had friends in town they wanted us to meet. At dinner, one person asked us about Mattie and the Foundation. However, before talking about the Foundation they asked..... what was Mattie like? I have been writing this blog since 2008, for almost 10 years now! You would think I would be able to answer this question easily. 

I actually did not find this easy at all to answer and when I came home and into today I have been reflecting upon why!? Mainly bothered by why I was SO BOTHERED by this question! First to be honest, I really do not like sharing the essence of Mattie, unless I know someone is truly interested and listening. If I deem this as just a perfunctory question, then my answer will be more guarded and to the point. So that maybe part of why I was bothered. The other problem for me is trying to capture and bring Mattie to life for someone who doesn't know him is hard! Not emotionally hard but simply hard to summarize Mattie in a few easy words! 

So instead of maybe sharing adjectives to describe Mattie, which to me are meaningless, I shared some stories about Mattie that hopefully helped illustrate the boy he was. I think the best way to learn any complex subject matter is through stories. I know that was my natural teaching style as an educator! To answer last night's question, I turned to story telling. After all, stories influence our lives! We can't think about a red cape without thinking of the story of Little Red Riding Hood, or how about gingerbread? I know when I see gingerbread and think of the story of Hansel and Gretel. 

The first story I told last night happened when Mattie was about three months old. He was sitting in our living room chair, with pillows propping him up. While sitting in the chair, Mattie began to make a wheezing sound. But it wouldn't go away! I truly thought he was having trouble breathing and immediately called the pediatrician. She asked me to describe the sound and what brought it on. Nothing brought it on, it just happened. I knew he hadn't swallowed anything to explain an obstruction of air. Anyway, the doctor told me to monitor him and remained on the phone line with me. Want to know what the wheezing was? It wasn't wheezing at all, it was Mattie's attempt at laughing. The more hysterical I got with the doctor on the phone, the more he wheezed. The doctor was thoroughly intrigued by Mattie's behavior! At a very early age, we learned that Mattie was a keen observer of other people and had a REAL SENSE OF HUMOR!!

The second story I told reflected on Mattie's "engineering" abilities. I always called him my "little engineer." A title he held from age 2. At 2 years of age, Mattie freely walked to the kitchen, went into our tool drawer and pulled out different screwdrivers. He then took them over to his hotwheel cars and proceeded to disassemble the cars, but WAIT..... it didn't end there. Mattie could reassemble anything he disassembled. An amazing and unusual skill! 

Get the picture?! This is how I began to describe Mattie, by trying to paint a picture of how he lived his life, interacted with the world, and how those of us who knew him reacted to his thoughts, feelings, and antics. Stories describe Mattie in a 3-dimensional way that a list of words could never do! However, despite all my thinking about this question today, the thing that bothers me the most is I don't have a short description of Mattie to help convey the child to others who don't know him. Peter and I have platform speeches and taglines to describe the work of the Foundation, but I don't have the equivalent for describing Mattie. As I write this tonight, my conclusion to my quandary is GREAT! It is great because platform speeches and taglines are good to describe work, a mission, and agendas, but NOT human beings. So I stick to my gut instinct...... if you want to truly know Mattie and our experiences with him, you are going to need to want to invest the time to listen and converse, as I find short pat answers don't make me feel good and most importantly they do not do Mattie justice. 

Wednesday, February 21, 2018

Wednesday, February 21, 2018

Tonight's picture was taken in April of 2007. I went digging through my files last night to find this photo. I could recall it but wasn't sure what year it was taken. My mom saw the photos of cherry trees that I posted yesterday on the blog and commented that she wished she could see them. I reminded her that she not only saw our DC cherry trees but viewed them with Mattie. 



Quote of the day: Your time is your life. That is why the greatest gift you can give someone is your time. It is not enough to just say relationships are important; we must prove it by investing time in them. Words alone are worthless… Relationships take time and effort, and the best way to spell love is “T-I-M-E.” ~ Rick Warren


I very much stand behind the sentiments of tonight's quote. Words are important but giving of your time is what separates an average relationship from a meaningful one. The investment of our self sounds easier said than done. We are all very busy and running in different directions, but there are times when I do see that someone is either alone or wants to talk, so I stop. I maybe frustrated internally at first by this, but I then let it go. 

Such an issue with time happened today! As we approach Foundation Walk season, I am more guarded with my time. Sunny takes up a good chunk of my day walking, so I have to factor that into my daily schedule. This morning I headed to the dentist. Most people would metro or uber there given its distance, but I walk. It is about a two mile walk each way. After that adventure, I got home and Sunny was begging for a walk. So out I went again and walked for another 90 minutes. Sunny can move at a clip and my thinking was we were going to walk quickly and return. However, once out of our building, I could hear my neighbor calling my name. My neighbor is an adult with special needs. I have known him for over a decade as he even would visit me when Mattie was alive. My neighbor likes talking to me and spending time with me. I am not deducing this, it outright tells me!

In any case, my neighbor decided to join us for our walk. I wasn't planning on this, and walking is typically a time when I do a lot of brainstorming for the Foundation. It is my private time to be outside and not to be mentally disturbed. Other than navigating the streets of DC. My neighbor doesn't walk as fast as Sunny or me, so we had to slow down and of course have conversation. Initially I was upset by this, but as we kept going I let that feeling dissipate as clearly my neighbor was lonely and was looking for an activity.

The funny part of all of this is my neighbor isn't used to walking so far. So I feel confident we gave him some exercise and time outside in our beautiful close to 80 degree weather. Yet one thing my neighbor can acknowledge which many cognitively intact people can't, is the loss of Mattie, and how this changes one's life. My neighbor lost his mom recently, who he was very close with, and from that loss he has learned the feelings of living with a forever loss. Working with people who have special needs can be challenging, frustrating, and overwhelming, yet I have found that people with special needs are very in tune for the most part to feelings and emotions and can communicate in ways so many of us can't. So at the end of the day, I maybe still working tonight because my schedule got pushed back, but taking the TIME to be present with those in our lives has intangible rewards. 

Tuesday, February 20, 2018

Tuesday, February 20, 2018 -- Mattie died 440 weeks ago today. 


Tonight's picture was taken in April of 2006. Mattie was four years old and I asked him to pose in front of this lovely red bud tree. They are very popular in our DC area and they are electric in color! This tree was outside of one of Mattie's favorite restaurants. You maybe able to tell given Mattie's expression in this photo, that he really wasn't in the mood for pictures and standing still. In usual fashion, Mattie complied but he gave his "false" smile. That smile always indicated to me how Mattie felt about something.




Quote of the day: Happiness is an attitude. We either make ourselves miserable or happy and strong. The amount of work is the same. ~ Francesca Reigler

This afternoon I met my friend Tina to celebrate her birthday. I did not know Tina when Mattie was alive. I got to meet her through a mutual friend and she came to our Foundation walk. I always consider Tina my first friend that I made after Mattie died. Now Tina is a major Foundation donor and I appreciate her standing behind our work. 

One of the desserts we had today to celebrate Tina's birthday. They were profiteroles stuffed with ice cream. They were delicious and we had a lovely lunch.... not rushed, with a beautiful window view, and wonderful food. 

Later in the day, I took Sunny out for another walk. It was glorious in DC today, with temperatures in the mid 70's! All of the cherry trees in front of the Kennedy Center are thoroughly confused! 

The colors are breath taking, the whole spectrum of pink!

Not only are they beautiful but the fragrance emanating from them is intoxicating. It is hard to believe that it will rain and be cold later in the week, which will most likely kill these beautiful flowers. 

While I was walking Sunny, I had the opportunity to talk with one of the guard dog handlers in front of the embassy near us. Typically we do not talk to each other because he walks an ominous German Shepherd. But today the handler asked me if I wanted to switch dogs, as he said his dog is a "cupcake." I laughed and said.... "some cupcake!" He proceeded to tell me that I would find walking his dog much easier than walking Sunny. He actually said Sunny is too much dog for him to walk. Fascinating to me! Yes Sunny does have a mind of his own when he walks and if there is a squirrel or rat involved, Sunny has no problem running after it. But if you walk Sunny enough, you know what to look out for and how to react and control him. I guess I did not realize others were observing me and saw the art form that I execute every day!

Monday, February 19, 2018

Monday, February 19, 2018

Tonight's picture was taken in February of 2008. That particular day, Mattie's kindergarten class went to Martha's Table in DC to help bag donuts and other items for the homeless. It was a sight to see all these little ones working! They appeared to be set up in a factory type line, with gloves and hair nets on! After all the food was bagged, it was clean up time. Mattie was a good cleaner and helper! As you can see he took a broom and pan and was actively participating. The little girl next to Mattie is Charlotte. Mattie deemed Charlotte his "girlfriend." Actually to be more specific he said she was the person he was going to marry! The beauty of Mattie!!! They were the best of friends and brought out the best in each other. 



Quote of the day: Compassion brings us to a stop, and for a moment we rise above ourselves. ~  Mason Cooley

Peter and I went to MedStar Georgetown University Hospital today to push our Mattie Miracle snack and item cart. Before we went up to the pediatric unit, we decided to walk through the children's art gallery on the first floor of the main hospital. Purposefully I do this periodically to see if Mattie's poster is still on display. It has been for 8 years now. 

This poster means a lot to me. Back in 2009, Mattie's child life specialist, Linda, asked Mattie to design his ideal hospital room. Mattie did just that out of Legos. But it did not stop there. Mattie developed a whole story line around the Lego model and the Lego characters he placed in the scene. The story was captured and turned into this poster! 

I am sure when Linda invited Mattie to participate in this exercise, she never thought that the outcome would be a legacy item!

Next to Mattie's poster in the art gallery is a collage I developed at the same time. Basically addressing the same question..... how would you design an ideal pediatric oncology room and hospital?

I answered that question visually and my canvas has been on display next to Mattie's for eight years!

Given that today is President's Day, Peter was able to come with me to the Hospital and push the cart around the three pediatric units. I am so glad that Peter joined me and got to see the cart in motion! Keep in mind that these were the same units Mattie was in while in treatment. So going back is always filled with memories. In fact, Peter walked right into room 10 in the PICU today. Room 10 is significant to us because that was the room Mattie died in. A room never to be forgotten. 

This is what the Mattie Miracle Cart looks like. Or at least the back of the cart! Pictured with Peter and me are Tricia and Miki. Both of these women were Mattie's nurses! Absolutely incredible, competent and compassionate women!

I go to the Hospital once a month to push this cart personally. I do this for various reasons. First, I want to be able to interact directly with patients and families, second, I want to observe how effective the cart is, and third, I want to get direct feedback from families about what works or needs improvement on the cart. Overall, I would say people are stunned that such a cart exists and better yet that it is a free service to them.  

Sunday, February 18, 2018

Sunday, February 18, 2018

Tonight's picture was taken in February of 2003. Mattie was ten months old. When I saw this photo tonight in my files, I was taken aback with how similar Mattie looks to Peter. This is totally a Peter look and gesture. I never really noticed this before, but there is something to be said to genes. 


Quote of the day: She was struck by the simple truth that sometimes the most ordinary things could be made extraordinary, simply by doing them with the right people... ~ Nicholas Sparks


I am a big Nicholas Sparks fan. A friend of mine from college, introduced me to Sparks years ago. She was studying to be a librarian and was intrigued by all books. For most of my adult life, I have always read more technical writings and not books for fun. Well that was until my friend started sharing the plot of a book she had read. The book was called, The Notebook, by Sparks. I was so captured by the tale she was telling, that I got the book. It was from that moment in time (probably when I was in my 20's), that I began reading fictional books for fun. Though I admit what I find fun reading, many others wouldn't! I prefer books about relationships and loss. 

Sparks' quote, as with a lot of his writings, is spot on. When you are in the company of the "right" person, the ordinary does feel like the extraordinary. It is the presence of that person that is special and therefore whatever you do, seems memorable or extraordinary. I would say that Mattie was such a person for Peter and me. Mattie had a way of making the ordinary seem so different. He got us to look at the world, situations, and experiences in a whole new light. Which is why (besides the simple fact that Mattie was our son) the death of Mattie continues to reverberate throughout our everyday lives. 

When I got home last night, these flowers were waiting me. Notice the roses are orange.... a Mattie Miracle color. In the middle of the roses are rubrum lilies. Which are my all time favorites because of their fragrance. They can brighten up a room, especially in the winter time. Their fragrance transports you right into summer. 

This afternoon, we took Sunny for a walk on Roosevelt Island. He was SO excited, he was practically running on the leash. However, he complied by stopping for a photo! It was 48 degrees, but it felt like spring was trying to pop out. 

Even the ducks were out and about and floating by us!

I affectionately call this "Peter's tree." Peter used to come to the Island and snap photos of this great big tree during each of the seasons. It is amazing to watch the transformation of this space throughout the year. Regardless of the weather though, Roosevelt Island is still a favorite of ours (and that includes Mattie and Sunny!).