Saturday, March 16, 2013

Saturday, March 16, 2013

Tonight's picture was taken in August of 2008. Though Mattie may look healthy, he was already diagnosed with cancer. Mattie was pictured with our resident Jack Russell Terrier, JJ. Mattie and JJ basically grew up together. JJ and his owner live several doors down from us in our complex. Though JJ wasn't Mattie's dog they had a very special bond. JJ responded to Mattie and really wanted his attention, love, and time to play together.







Quote of the day: A person can learn a lot from a dog, even a loopy one like ours. Marley taught me about living each day with unbridled exuberance and joy, about seizing the moment and following your heart. He taught me to appreciate the simple things-a walk in the woods, a fresh snowfall, a nap in a shaft of winter sunlight. And as he grew old and achy, he taught me about optimism in the face of adversity. Mostly, he taught me about friendship and selflessness and, above all else, unwavering loyalty. ~ John Grogan


Peter and I had the opportunity to talk to our neighbor, JP. JP is the owner of JJ, our resident Jack Russell Terrier. JP shared a story with us and also reminded me of what happened along time ago between Mattie and JJ. One day when Mattie was outside in our commons area playing, JJ ran up to him. Mattie had his old sandals on. Honestly these sandals were so worn they couldn't be donated, but needed to be tossed in the trash. JJ was fascinated by Mattie's sandals and literally pulled a sandal right off of Mattie's foot and ran back home with it. We all laughed over this, but by the time we got to JJ's home, he hid the sandal from us. He clearly did not want us to find it. Needless to say the sandal was old, and I was frankly happy JJ took it as a play toy so that Mattie would wear his new sandals.

JP told me that after Mattie died, he was cleaning out JJ's toy basket and found Mattie's old sandal. So he threw it out into his kitchen trash can. The next morning when he woke up, JJ had knocked over the trash can and took all the trash out just to retrieve the sandal. That was JJ's message that this part of Mattie was needed and it wasn't meant for the garbage. In fact, after Mattie died, JJ was depressed. He did not want to eat and was lethargic. JJ would also come down to our door and sit on our doorstep hoping to see Mattie again.

Recently, JP said he was sitting in his apartment and JJ ran up to him with something in his mouth. What was it???!!! Yes it was Mattie's sandal. It is hard to believe that this sandal has out survived Mattie and even more amazing that JJ would still be attached to this item. I think it speaks to the loyalty, connection, and bond they shared with each another.

JJ attends our Mattie Miracle Walk each year and rest assured he is always recognized by one of our faith blog readers. Mattie always wanted a dog, and though he never technically had one, I am happy he did experience the special love that only an animal can provide. In Mattie's case he had the love of Patches as well as JJ, "man's best friend!"
 

Friday, March 15, 2013

Friday, March 15, 2013

Tonight's picture was taken in March of 2007. We took Mattie to Key West, FL that spring to spend his school break with Peter's parents. Mattie saw this dinosaur made out of found metal pieces (look closely because it is ALL found art!) and decided to pose next to it. Mattie was doing his cute impression of a dinosaur!


Quote of the day: Develop an interest in life as you see it; the people, things, literature, music - the world is so rich, simply throbbing with rich treasures, beautiful souls and interesting people. Forget yourself. ~ Henry Miller


For some reason, I was in a funk all day today. I spent the majority of the day at home, which doesn't help my mood. In addition to everything else I am working on, I am also focused on a literature review for one of the working groups I serve on for the Foundation's standard of care project. Which means a lot of computer time. Between my mood and sifting through literature on childhood cancer, it was a bad overall combination.

In fact, I am not sure I would have ever migrated out of pajamas today if I did not have a meeting scheduled at Mattie's school with Donna this afternoon. Donna, as my faithful readers know is a kindergarten teacher at Mattie's school. She wasn't Mattie's teacher, but Donna knew Mattie because his classroom worked closely with hers. Three years ago, Donna invited me to her classroom and wanted to brainstorm ideas on how she could get me to interact with her class. After an afternoon of tea back then, we came up with a three part project covering the wonderful artists, Matisse and Picasso. So it is almost like a spring tradition for us. This will be the third year in a row that I am bringing this three part lecture and hands on activity to her classroom. 

When I arrived at Mattie's school, I wasn't sure if I was coming to going. I have a vicious headache and when I am in one of these depressed moods, I am not always the best of company. But Donna showed me the new additions to her classroom, and as we were talking curriculum, I went into educator mode. Which snapped me out of the funk I had been in earlier. In addition, while having tea, two other teachers joined us. One of whom was Mattie's kindergarten teacher. So the four of us had a wonderful time chatting about a host of things. I guess once a teacher, always a teacher. I fit in! 

I admit being around children is hard for me. Actually being around happiness for me is challenging. But somehow I make it work for Donna's class. It is truly the only time during the year that I get to interact with little ones. In my mind, Mattie will always be stuck in kindergarten, despite the fact that if he were alive today he would have been in fifth grade. So every time I walk in the kindergarten classroom, I think of Mattie, I try to remember the experiences he had in that lower school building and a part of me wonders what he thinks of my April classroom visits. Timed with the month he was born in!
 

Thursday, March 14, 2013

Thursday, March 14, 2013

Tonight's picture was taken on March 7, 2007. Mattie was almost five years old and as you can see he was enjoying the spring snow fall. Mattie made little snow castles that day and with his stone collection decided to decorate each castle.



Quote of the day: People are like stained glass windows: They sparkle and shine when the sun is out, but when the darkness sets in their true beauty is revealed only if there is a light within. ~ Elisabeth Kubler-Ross



At 2am this morning, there was an extremely loud noise that woke me up. It woke me up out of a deep sleep, and therefore that was the end of sleeping for the night. In addition to the loud noise, I also heard a man screaming! Not a great sound at 2am!!! At first I thought the sound was lightning and thunder. But I heard NO rain outside. Peter got up and looked outside our window and saw that a car crashed and three men were involved. Two were trying to walk away from the car, and the third was trapped in the car. Needless to say police, fire trucks, and paramedics responded to this horrible accident. So this is the start of our day. Unfortunately it did not get any better.

I went to zumba today and was talking to one of my classmates. This woman and I both suffer from chronic pain. Different types but none the less daily issues. We commiserated with each other, because we know that people can't see our pain and therefore at times think we are exaggerating. There are NO physical signs, yet we know how we feel and we also know what great strength it takes to get out of bed and function. I am pretty sure that some of the pain I deal with on a regular basis would send the typical person over the edge. As my friend Karen says, she would be hitting something if she had to contend with daily headaches. That is only one of my various pains. Needless to say it was helpful to chat with a fellow sufferer, it just makes you feel understood.

The other highlight of my day was meeting with my friend Margaret. Margaret was Mattie's first preschool teacher. As I say to Margaret all the time..... in 2005, Mattie found a wonderful teacher and I made a wonderful friend. Margaret and I instantly became friends that year. We have a lot in common, we can talk for hours with each other, and when we are together we simply have fun. Margaret is the type of person that Elisabeth Kubler-Ross' quote is referring to. She has a light that shines from within and she came into my life when I really needed positive support, guidance, and direction with Mattie's development and education. It was within Margaret's classroom that Mattie became socially secure, learned to be a friend, and truly blossomed. Mattie brought Margaret and I together, and it was within her classroom that Mattie was nicknamed "Mattie Moon." Many of us who look at the moon now think of Mattie, but you should know that this symbol was first attached to Mattie in Margaret's classroom.

I haven't wanted to face the reality of Patches. Patches is unable to eat anything, can hardly drink water, and now her nasal passages are becoming blocked. She is looking very frail and is staying super close to us. She practically sleeps on top of me at night. Peter and I realize that we have to make a decision about Patches because we do not want to see her suffering or declining so rapidly that she will be in terrible pain. At the moment, I can't think of our home without Nurse Patches. She has been an integral part of our lives and she has given us something to focus upon and nurture.
 

Wednesday, March 13, 2013

Wednesday, March 13, 2013

Tonight's picture was taken in March of 2008. This was four months before Mattie was diagnosed with cancer. He seemed so happy and full of life back then. That evening, we went out into our commons space so  Mattie could learn to fly his kite. The beauty of our commons space is it sometimes acts like a wind tunnel, which makes it the perfect place to learn to fly a kite! As you can see, with some practice Mattie finally got his kite off the ground!!!! The joy of watching Mattie learn something for the first time will never be forgotten.


Quote of the day: The doors we open and close each day decide the lives we live. ~ Flora Whittemore



This morning I walked through the campus of the George Washington University. A campus that is not only in my neighborhood, but it is where I attended graduate school and worked for MANY years! In the main quad of the campus was this very large chalk board display with the words on the chalk board stating: "Before I die......" Needless to say this chalk board caught my attention. Not only because of its size (as we typically do not see a block long sized chalk board on the city streets) but also because of the three words written upon it. As I went closer to the wall, I saw this signage which I posted here. Basically the GW community is being asked to pick up a piece of chalk and complete the sentence...... before I die..... so others can read, reflect, ponder, and even respond to the writings.

 

 

Frankly this existential question is a worthy one to ponder and like the signage said, I did stop to ponder and reflect on what was written on the chalk board. Keep in mind that the reflections came most likely from undergraduates. I was SO appalled by the responses that I did not photograph them. For example, one response to "Before I die..." was: "to experience as many STD's as possible!" There were others just as thoughtless, careless, and demeaning. I factor in the age group and demographics and this helps to explain part of the insensitivity. The age of invincibility! Yet given the quality and reputation of this university, I would expect better for its student body! As a graduate of the University and former educator, I was disappointed in what I was reading! Clearly privilege and a fine education doesn't lead to introspection, wisdom, and a basic desire to be a positive influence in this world.  

 

This large chalk board made me ponder what the responses would be like if this board were at Georgetown University Hospital's pediatric department? A place where children have life threatening diseases and their families are worried about the outcome and destination of their child and their lives. My hunch is the responses to "Before I die....." would be a world different than what I saw today! Our context, lens, and experiences influence our thoughts, perceptions, and feelings. The only meaningful thing written on this board today was "Do good."

 

 

As we are well into March and our clocks have sprung ahead, I noticed today that our daffodils have finally opened up in our garden. To me this seems like an official image of Spring!

Peter and I spent the evening with several members of our Foundation Walk committee. This is a team of people who we admire and we are grateful for their commitment of their time, energy, and efforts to brainstorm this event and also for their help running it. Everyone leads busy lives, but when people continue to stop and help us, I do take notice. Such efforts mean a great deal to me not only as the Foundation president but more importantly as Mattie's mom!
 

Tuesday, March 12, 2013

Tuesday, March 12, 2013 -- Mattie died 183 weeks ago today.

Tonight's picture was taken in March of 2009. In front of Mattie was a Lego city he and Peter created and built together. While battling cancer, Mattie was very prolific Lego wise. I think Mattie and Peter constructed every Lego kit on the market in 2008 through August of 2009. All I can say is thank goodness for Legos, they kept us all sane. Which is why Legos are always featured at the Mattie Miracle Foundation Walk each May. In honor of our Prince of Legos!


Quote of the day: Suffering has been stronger than all other teaching, and has taught me to understand what your heart used to be. I have been bent and broken, but - I hope - into a better shape. ~ Charles Dickens


I haven't been to zumba in over a week. Between Foundation items and my nerve issues, I just did not find the time to go. Despite a horrible night of sleep, I decided to start my day off with exercising. There was torrential rain in the DC area this morning, but that did not stop me. I got myself up and out. As always getting into class, jumping around, seeing people, and hearing music are all therapeutic for me. Later in the day, I even received an email from my teacher who said she enjoyed seeing my smiling face today. A very lovely comment, for a very dreary day. Some days the weather mirrors how I feel internally, but nice comments have a way of melting the negative feelings inside.

This afternoon, I went to visit my friend Mary who lives in an assisted living facility. I typically visit Mary in the evenings, but with any institution it has a different rhythm by day. I got to meet several residents, other staff members, and chat with Mary. Mary and I were in about the same mood, but we have a way of perking each other up. Of course eating chocolate while I was feeding Mary lunch didn't hurt. Chocolate is my drug of choice, it is like a little ray of sunshine in my day. An addiction that began while caring for Mattie in the hospital. I couldn't make it a day in the hospital without some form of chocolate, and therefore this has become a definite coping mechanism.

I spent the rest of the day very focused on Foundation items at home. The irony is I find I am much more productive after I spend the day outside and interacting with others.

Monday, March 11, 2013

Monday, March 11, 2013

Tonight's picture was taken in March of 2009. A friend of mine sent Mattie a puzzle in the mail. When Mattie put the puzzle together it was in 3-D. Mattie thought this was VERY neat. As you can see the ocean puzzle was in his hands. However, seeing this photo brings back memories of what our home used to look like. Certainly when Mattie was well, we had toys all around us. But when Mattie was battling cancer, our home was taken over by gifts of all kinds. Gifts by the boat loads. These items kept Mattie busy and engaged and they also reminded us that people cared and wanted to support us. It was only years after Mattie died that I began digging out from every item. In fact I would say the first 18 months after Mattie died, I couldn't emotionally touch anything. We lived in chaos and I couldn't care less. Slowly over time, I have been attacking piles of things and I can finally say our home no longer looks like a storage unit! Yet if you gave me the option of having Mattie back versus organization, I would take Mattie any day.


Quote of the day: Grown-ups never understand anything by themselves, and it is tiresome for children to be always and forever explaining things to them. ~ Antoine de Saint-Exupéry


Tonight's quote captured my attention, especially after the day I have had. I consider myself a very introspective person, but I have to admit I learned a great deal more about my feelings today after interacting with my new friend, Sam. Sam is only three years old and he is the youngest child of Coach Dave. My faithful readers know that when Mattie got sick, Coach Dave came into our lives. Dave was the head football coach at Mattie's school and was instrumental at getting his team to support Mattie. Dave visited Mattie often both at home and in the hospital and continues to be a vital and committed part of Mattie's Foundation.

A couple of weeks ago, one of Dave's daughters, Annie emailed me. Annie was one of our children vendors at our Foundation Walk last year. She designed amazing duct tape purses. I am not sure how she could make a duct tape purse look so pretty and fashionable, but she did it. She also sold every single purse she brought to the Foundation Walk! When Annie recently emailed, she wanted me to know that her school hosts an annual Community Service Bazaar. As a 6th grader she had the opportunity to select a charity or organization of her choice that she wanted to feature at the Bazaar. She selected Mattie Miracle! I was very honored and she invited me to attend the event today.

When Mattie was in kindergarten, Annie was in first grade. They both attended the same school back then. I learned from Evelyn (Annie's mom), that Annie actually knew Mattie. I had NO idea! So in a way, the selection of Mattie Miracle has personal meaning to her and her whole family. Annie worked with two of her friends and together they manned a table featuring information about Mattie Miracle as well as sold various creative items the girls hand made. They sold duct tape wallets, friendship bracelets, magnets, hair clip bows, and cookies. However these girls were ingenious. They put a sign on their table that stated, "free gift with purchase." The free gift was an orange Mattie Miracle bag. It was a totally clever idea and I heard lots of chatter from fellow students passing by about wanting the free bag.

The entire hallway of the middle school was filled with tables. Each table was manned by a group of girls, and each table was raising money for a different charity or organization. It was wonderful to see Mattie Miracle right in the midst of this. I got to meet the head of the middle school and several teachers in the process. But the wonderful part of this event was seeing the energy, dedication, and passion of Annie and her friends promoting Mattie Miracle. In 45 minutes they sold close to $200 worth of merchandise. I told them I want to hire them! These girls have also committed their time to designing and selling crafts at our fourth Annual Mattie Miracle Walk on May 19th. I am thrilled to see this younger generation taking an interest in Mattie Miracle and using their skills to bring awareness to childhood cancer.
 
In addition to interacting with Annie and her friends, I also spent some time with Annie's youngest brother, Sam and his mom, Evelyn. Sam reminds me a lot of Mattie. He is a live wire and knows what he wants! Not everyone knows how to interact with a preschooler like this, but I learned from the best of them! I have to admit when I set out today to spend time with Coach Dave's family, I had no idea that in the process I would make friends with a three year old, and that I would learn something about myself in the process. Sam gave me a great gift today and he wasn't even trying. He reminded me that I was a mom (because with time, my concrete role of being a mom has faded) and he resurrected skills that I no longer use, but certainly used for seven years of Mattie's life. The beauty of Sam is that he wanted to spend time with me and interact with me. This wasn't something that was planned or was asked of him. At one point during the Bazaar, Sam stayed by my side and together we were snapping photos of the day's event. I gave him my camera and I used Peter's camera. Sam was intrigued by the pictures I was taking and he loved looking at the pictures right after I took them (the beauty of digital technology). So he asked whether he could take pictures too. This reminded me of Mattie.... monkey see, monkey do! I am not sure every adult would hand over a camera to a child, but I do believe in hands on learning, and a camera is a wonderful way to creatively learn and absorb the things around you. Below, I will share one of the photos Sam took today so you can get an idea of the fun we had together.

Before I headed back to DC, I also had the opportunity to visit with Coach Dave at his new school. When Dave saw me walking into his office with his wife and son, he got out of his chair and said I had just made his day! SO LOVELY TO HEAR!!!! The feeling was mutual. Dave is the only man, other than Peter, who always wears his Mattie Miracle wristband that we gave him in 2009. Like Peter's, Dave's wristband is also worn and is changing colors. But to me this is a symbolic representation that Mattie is always with Dave in his memory!

 

Here is a photo of the wonderful sixth graders who featured Mattie Miracle at their Community Service Bazaar table. From left to right are: Serena, Annie (Coach Dave's daughter), and Amelia.

 

The wonderful items the girls made and sold!

 

I snapped this photo because there were literally Mattie Miracle orange bags all over the place.

 

 

One of the Posters the girls created marketing their merchandise.

 

Here is a photo of my newest buddy, Sam!

 

I entitle this photo, "The photographer's helper!"

 

Sam snapped several photos today. Here is one he took of himself! A close up of his beautiful blue eyes. It was a day to remember!

Sunday, March 10, 2013

Sunday, March 10, 2013

Tonight's picture was taken in March of 2009. Mattie posed with Jessie, one of his art therapists, next to one of the wonderful and beautiful paintings he created. As Mattie's art therapists knew, Mattie LOVED painting on canvas. As many as they gave him, he used each and every one up. Many of Mattie's art work now decorates our home, and this particular colorful piece is in our dining room! Thank goodness for Mattie's creativity and for being prolific. He left a lot behind for us to cherish.


Quote of the day: He who has a why to live for can bear almost any how. ~  Friedrich Nietzsche


I am contending with a terrible headache. Despite that, I am pressing through it and trying to do all sorts of projects and work. But tonight's blog is going to be short because I just can't handle any more computer time today. As always, I appreciate you checking in on us and reading the blog. Today was a beautiful weather day and the highlight of my day was Peter suggested we sit outside on our balcony. Sitting still for an hour was beautiful and even Patches came outside for fresh air. A family of three outside, seeking the sun!