Saturday, December 12, 2015

Saturday, December 12, 2015

Tonight's picture was taken in December of 2007. Mattie loved to see the National Christmas Tree, and frankly until Mattie came into our lives Peter and I NEVER walked to see the tree. Mind you it is only blocks from where we live. Mattie made us explore our world in so many different ways. That night when we saw the tree it was ABSOLUTELY bitter outside. We were all freezing, but to our surprise behind the tree was a fabulous Yule log. The fire and heat from this log was such a welcomed feeling. We will never forget that visit to the tree, all the wonderful toy trains running around the tree, or the 50 smaller trees representing our States. 


Quote of the day: There were a billion lights out there on the horizon and I knew that all of them put together weren't enough to light the darkness in the hearts of some men. ~  Michael Connelly


Peter and I worked most of the day today and as mid afternoon hit, we knew we had to break and get out of our home. The weather today has been spring like, in the upper 60s, and it was too beautiful not to be out and part of it. 

We took a walk to the National Christmas Tree, which is right by the White House. This was a tradition we did with Mattie, however, Peter and I haven't done it since Mattie died.  

I am so happy we saw the tree by day light and then at night. Different times of day give you something else to appreciate about the National tree and the 50 smaller trees that surround it. 

In November 1923, First Lady Grace Coolidge gave permission for the District of Columbia Public Schools to erect a Christmas tree on the Ellipse south of the White House. The organizers named the tree the “National Christmas Tree.” That Christmas Eve, President Calvin Coolidge walked from the White House to the Ellipse and “pushed the button” to light the 48-foot Balsam fir, as enthusiastic spectators looked on.

In 1954 the Washington Board of Trade and the Washington Citizen’s Committee conceived of a wider celebration called the “Christmas Pageant of Peace” in which the tree lighting event expanded to three weeks. A “Pathway of Peace” was composed of smaller trees representing all the states, territories and the District of Columbia. The 1954 opening ceremony was held December 17, when President Dwight D. Eisenhower turned the switch. The longer event, with local nightly entertainment, proved very popular and continues to the present. 

Peter is standing in front of the Massachusetts state tree, which is part of the "Pathway of Peace" display mentioned above. Each of these smaller State trees is decorated with ornaments that come from that State! 

Here is a part of the entire display that Mattie LOVED!!! He enjoyed seeing all the toy trains running around on their tracks. The children who come to see the tree all play a game with pennies. They try to toss pennies into the open cars of the trains as they pass by. It is fun to watch and something Peter always did with Mattie!

Here is a close up of some of the ornaments on the New York tree. What caught my attention about these ornaments is that they were made by students at the LaGuardia High School in NY, where my lifetime friend Karen teaches mathematics. So I sent her a photo of the tree!!! Inside these plastic ornaments, were these beautiful origami type structures with holiday themes on them. 

A photo of the Tree at dusk. The lights went on the tree and slowly what I noticed was things were all in GOLD. The irony about all of this was the childhood cancer community asked the President of the United States to light the White House in Gold for childhood cancer awareness month in September. He refused, AGAIN! 

Now three months later everything in DC seems to be aglow in GOLD! 

This is the entrance to the famous Occidental Grill restaurant in DC. I have always wanted to go here. Here are some fun facts about the Grill:

1) Occidental is built by Henry Willard in 1906.

2) Occidental hosts the Washington Senator's 1924 World Series Victory Celebration.

3) In 1962 John Scali meets with Alexander Fomin at Occidental bringing closure to the Cuban missle crisis.

4) Occidental celebrates 100th Anniversary in 2006.

5) In 2013 the Hollywood film Captain America films at Occidental.

Though the Grill is know to be a legendary restaurant in DC, that is NOT why I wanted to go to it. Every time I have passed the restaurant, I greatly admired their outdoor patio area. It reminds me of a European restaurant, surrounded with greenery in the middle of the city. It just seemed charming, as the perfect setting to dine in. So today, being a warm evening, we had the pleasure of trying the Grill and sitting outside. Here was my view. Trees twinkling with big red Christmas balls hanging from their branches!

What made dining outside possible for me were these wonderful flamed torches that gave off incredible heat! 

You can see Peter surrounded by greenery and the torches! To me this was one special restaurant. Though the patio is near the street, the greenery seems to just block out the chaos. In addition, no one is in a rush to throw food at you, to have you finish, or to give away your table. This lack of freneticism is perfect for me. I entered the restaurant with a bad headache and over time just being in this space, surrounded by greenery and these tranquil flames, I started to relax.  

After dinner we walked home, and got to see the Tree one last time at NIGHT!

We posted photos of this GOLD tree on Facebook today and my message about DC going gold now rather than in September was this....

Childhood cancer awareness should not be a one month ritual, but instead an issue on the forefront of our hearts and minds 12 months a year. The holiday season is challenging for so many of us who lost a child to cancer, yet as Peter and I soaked in the sights of the National Christmas Tree as well as other holiday displays, it felt magical. Mattie's spirit seemed alive to us!!!

The beauty of the National Christmas Tree!

Friday, December 11, 2015

Friday, December 11, 2015

Tonight's picture was taken on December 2, 2007. I posted two photos so you understand the series of emotions we were dealing with. In the first photo you can see that Mattie was all red and blotchy from crying. At the time, I am sure I was most frustrated with his tantrum. Now all I can remember is that Mattie had one but in all reality I can't remember over what the tantrum was about. 

Mattie was an emotional beast like myself. Which is why we understood each other well. But if you are not used to being around people who perceive their world and react to it in intense ways, then people like Mattie and me can be overwhelming for you. This second photo shows Mattie pulling out of his tantrum and I clearly got him to smile and turn a corner in how he was feeling. 




Quote of the day: Do just once what others say you can't do, and you will never pay attention to their limitations again. ~ James R. Cook


I had my monthly licensure board meeting today. Do not even ask me how long I have served on this board. A long time! I was practically a different person when I started on the board. Yet because of my length of service, in a way I am like the purveyor of history. I was unable to attend and preside over last month's board meeting because I was in Florida with Peter presenting at a conference. You wouldn't think I could be missed, but apparently I learned today that I was! 

I honestly did not know I had this reputation, but maybe with the holidays approaching people let their guard down more and felt comfortable sharing things. So it turns out that my reputation is that of a TOUGH COOKIE, no nonsense, and spit fire. Well the spit fire descriptor didn't necessarily surprise me but I guess the other two did! Yet these are actually compliments because in the work that I oversee, which in some cases entails listening and judging ethical violations perpetrated by mental health professionals on members of the public, I feel one can't be wishy washy or a weak leader. My tolerance for unscrupulous and unethical behavior is LOW, and my radar for fishiness is HIGH. Over the years I have been very good at reading between the lines and to be able to ask questions that will get to the truth and the answers that are needed. 

After today's meeting, the staff were talking and of course I was still in the room. They were joking around and mentioned that at first glance when you look at me I seem petite and refined and therefore how threatening could I possibly be? Then they added, UNTIL I OPEN MY MOUTH, and the perception changes immediately! In any case, they made me laugh and smile today. I may be a mayoral appointed volunteer as licensure board chair for over a decade, but I have always taken my role very seriously and expect others working around me to do the same. 

Thursday, December 10, 2015

Thursday, December 10, 2015

Tonight's picture was taken in December of 2007. We took Mattie to the US Botanical Gardens during the holiday season. Mattie loved going to the Gardens around Christmas time. For various reasons, one of which was the lovely train displays. Very creatively done, with special plants and vegetation incorporated around the tracks. Naturally the trains all moved and journeyed around the room and went through tunnels and other interesting structures. As you can see, Mattie posed here by a fascinating plant hanging from the ceiling. We loved how Mattie looked like he had a bush of hair. 




Quote of the day: If you want to test your memory, try to recall what you were worrying about one year ago today. ~ E. Joseph Cossman

This afternoon I met up with my friend Catherine and celebrated her birthday. Catherine and I have known each other since 2005. Her daughter and Mattie were in the same preschool classroom two years in a row. When Mattie was alive, Catherine and I spent a lot of time together, especially in the summers. She would invite us to her neighborhood pool and it was a wonderful outing for all of us. Where we live in the city, there wasn't a built in play group and social outlet for Mattie and me, which is why I greatly appreciated Catherine reaching out to me. 

Catherine is also a cancer survivor, in fact she was battling cancer at the same time Mattie was, and I remember despite her own battle she came to visit us in the PICU. Though Catherine knows cancer first hand, and I know it as a caregiver, we see eye to eye on many things, which makes it super easy for us to relate to one another. We don't have to apologize for feeling or thinking a certain way, and for having lows and more lows. Literally we had a four hour lunch and we talked the entire time about all sorts of things. But what I appreciate is a friend, who knew me prior to Mattie's cancer, who can understand that the holidays are problematic for me and most likely will always be. Not just acknowledging it but talking about it. 

Clearly it isn't just those of us who lost a child to cancer who feel this way about the holidays. I am not sure why the Christmas season in particular is fraught with issues for so many of us. I don't know if it is our expectation for the Norman Rockwell picture perfect kind of holiday, the pressure of getting decorations up and the right presents for people in our lives, or the simple fact that Christmas NOW STARTS IN OCTOBER! Giving us an expanded and more long term time to reflect and in some cases stew in sadness and what is missing from our lives. It is not to say that we can't be grateful for some aspect of our life. We can! Yet holidays bring families together. If you doubt me, just tune into Facebook at this time of year. I have to really limit my viewing because it is overwhelming and only reminds me of how different I am from most people whose lives haven't been touched and ravaged by childhood cancer.   

Wednesday, December 9, 2015

Wednesday, December 9, 2015

Tonight's picture was taken in December of 2007. We took Mattie to the US Botanical Gardens, which was one of our favorite places to go in the winter time. Besides its green beauty, it was like walking into a gloriously hot and humid environment. An environment which was needed for many of the plants in the atrium to grow and thrive. But hitting that heat and humidity when it was freezing outside was like stepping off a plane and visiting Florida. Except in this case, no traveling was necessary. During Christmas time, the Garden decorates beautifully and brings out these wonder models of famous Washington, DC buildings comprised of plant material. As you can see Mattie posed in front of the US Capitol model. 



Quote of the day: Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved. ~ Helen Keller


This morning I headed back to the post office where our Foundation PO Box is located to mail all of our holiday envelopes to our supporters. Carrying 500 envelopes in large US Post Office plastic trays is no easy feat. So instead of parking a block away from the post office and walking, I decided to pull over right in front of the post office, with the thinking that I would quickly jump out of the car and leave the trays on the counter for Darryl. Darryl is our amazing Post Office employee who I want to adopt. He looks out for Mattie Miracle, our post office box, and even encourages people in the spring to attend our Walk. Darryl knew I was coming in to drop off the trays, so I did not even have to explain to him what I was doing.

However, parking by the post office is challenging. Right in front of the post office there is metered parking as well as parking for people with disabilities. So this morning because I was desperate and knew I was going to be QUICK, I pulled into a parking spot designated for people with disabilities. Mind you I had my hazard lights on and my intention was to take the large trays with the letters inside the post office and come out within seconds. Things were going smoothly, I had my hazard lights on and just took out all of the trays from the car and had them in my arms. I was literally seconds from walking into the post office, when a women in a SUV pulled up to me and started screaming at me. She could see I did not have a disabled parking permit and wanted this spot. I told her that I understood and that I had no intention of parking there, I just needed to drop the trays on the counter, which would take two seconds and then she could have the space. To me it was a reasonable request. I certainly know the value of such a parking spot when disabled, as I used them for over a year with Mattie. 

Nonetheless, despite explaining my situation to her and literally holding the heavy trays pictured here in my arms, she insisted I move my car IMMEDIATELY. So I had to put all four trays back in the car and move. I am sure at some point I will understand her perspective, but today isn't one of those days. In the time she spent yelling at me, I could have gone into the post office (I don't have to stand in line or do anything! Literally I just walk in, dump the trays on the counter, and leave) and jumped back in my car and been gone. Needless to say, I am still reeling from this encounter today. Maybe because I really try to think about others and their needs all the time, and when someone is accusing me of being the exact opposite of what I am, it bothers me. 

Peter is in New Jersey today on business. As he took the train from DC to NJ at 7:30am, he sent me some sunrise photos over the Chesapeake Bay. 

To us, the sun is a glorious sight, since one of the last creations Mattie painted was his large painting of "Mr. Sun," a symbol we incorporated into the Mattie Miracle logo.

Tuesday, December 8, 2015

Tuesday, December 8, 2015 -- Mattie died 325 weeks ago today. 


Tonight's picture was taken in December of 2007. It coincides with the photo I posted last night! In last night's photo I indicated that I visited Mattie's kindergarten classroom and shared a storybook with the children as well as invited them to decorate homemade gingerbread cookies. This was Mattie's final product! Mattie was a big marshmallow fan, as you can see. There is practically more marshmallow than cookie here. 





Quote of the day: There is only one of you in all time, this expression is unique. And if you block it, it will never exist through any other medium and it will be lost. ~ Martha Graham

I made my last candy donation today! It is a total thrill to have this behind me. I have seen enough candy this year for a lifetime! I wish I could say that things will now slow down for me, but I can't! 

I am starting our Foundation's Walk preparations even earlier this year. A friend of mine connected me to Fairlington Dental (http://www.fairlingtondental.com/), which is a dental practice based in Arlington, VA. Fairlington Dental has donated a significant amount of candy, two years in a row, to our candy drive. My friend mentioned that Fairlington Dental could potentially be a corporate sponsor of the Walk. So about a month ago I wrote to Dawn, the Practice Manager at Fairlington Dental. Dawn is a delightful person to communicate with and I was absolutely thrilled to receive in our Mattie Miracle mailbox yesterday a platinum sponsorship check for our Walk in May!!! Corporate sponsors are VERY important to Mattie Miracle, because it is thanks to their contributions and steadfast support that we are able to accomplish all of our psychosocial miracles. We are honored to have Fairlington Dental as part of our Mattie Miracle family! 

In fact, another friend of mine needed to see a dentist about her teeth. After reading a previous posting on the blog about Fairlington Dental, she decided to contact them. Mainly because she LOVED how supportive they are of Mattie Miracle's candy drive. In any case, my friend LOVES Fairlington Dental and has been having a fantastic experience with each visit. It is wonderful to get such feedback from a strong supporter! You maybe asking yourself where does Fairlington Dental get all that candy that they donate to Mattie Miracle. Well they get it from their patients. Fairlington Dental does a candy buy back program after Halloween. Patients can bring in up to 30 pounds of candy and for each pound, they will get a dollar in return! Rather a nice incentive! Then Fairlington Dental donates all the candy they receive to charity. In fact, we received 300 pounds of candy this year from Fairlington Dental! Way to go Fairlington Dental, we are so happy that we are connected through candy and through their financial support of our mission. 

Peter was going through electronic files in his office today and came across this Mattie art piece. Peter sent it to me and reminded me that Mattie created it one day while visiting Peter's office! That was Mattie.... bold, colorful, and creative! 

Monday, December 7, 2015

Monday, December 7, 2015

Tonight's picture was taken on December 5, 2007. That day I went into Mattie's kindergarten classroom as a parent visitor. I read the class a Jan Brett book entitled, The Gingerbread Baby, and then had the children decorate their own gingerbread cookie. I baked each of those cookies and the cookies looked just like the character in the book. Mattie's preschool teacher, Margaret, gave us this special book. She and I both liked the fact that the main character in the book was named "Matti." Of course so did my Mattie! Needless to say this activity was a big hit that day!!!


Quote of the day: One is not born into the world to do everything but to do something. ~ Henry David Thoreau

I felt like I was on a treadmill today, doing one chore after the other. One of my major tasks was visiting the post office because I needed to determine how much postage would be required for our Foundation's holiday mass mailing. 

All the envelopes you see here will be mailed this week. It has been a lot of work, but each December Peter and I feel it is important to send greetings to our supporters. In addition, this letter also announces our December annual drive, in which we try to raise funds for the Foundation. 

Since I live in Washington, DC and I have a Post Office down the block from me, I could visit it and get my questions answered for this mass mailing. But that is NOT where I go! 

Our Foundation's PO Box is located in Arlington, VA and it is at this site that I met an outstanding post office employee years ago named Darryl. Darryl is a one of a kind. He helps everyone and he does it with an amazing smile and grace. The Post Office needs to clone Darryl! I rather drive 20 minutes and over the river to visit Darryl than interact with anyone at my own local post office. Darryl looks out for our Foundation's mailbox and on his tie he wears a Mattie Miracle awareness pin throughout the year! 

Though the Post Office customer line was out of control today, Darryl handled all my questions, found the right stamps and quantity for me, and then gave me these mail trays to help organize the letters. It will make it easier when I drop them off to him later in the week! Darryl is definitely one of the people I am thankful for and he is one of the special people that has come into my life because of Mattie Miracle! 

Sunday, December 6, 2015

Sunday, December 6, 2015

Tonight's picture was taken in December of 2008. Mattie was home recovering from his limb salvaging surgeries. That was one difficult period of time. It was around that time I began to see his personality changing and it being affected from his intensive treatment cycle. One of Mattie's friends gave us this great elf hat and reindeer headband. Peter was trying to perk Mattie up and pretended to be part of a sleigh with Mattie being Rudolf the Red Nose Reindeer, guiding the ride! Of course Mattie could hardly walk or stand on his two feet without support, but he was giving it his all! Besides Mattie's bald head, you can see two tubes hanging beneath his shirt. This tubes were part of his broviac catheter which was how his chemo, all blood draws, and other medications were administered. In essence they were tubes that went through his chest and into a vein leading just above the heart. It was daunting at first knowing that these tubes were always hanging from Mattie's body and if yanked or pulled hard, would cause him to bleed out and die.


Quote of the day: One of the most important things you can do on this earth is to let people know they are not alone. ~  Shannon L. Alder

After 10 years of working on K Street in Washington, DC, Peter's company is moving to Virginia. It is an end of an era for us. Ten years ago, Mattie and I helped Peter move into his office and decorate it. It is a part of our family history in a way. This was the first time in Peter's career that he earned his own office space. So it was a big deal to us and Mattie loved to visit Peter in the office. 

Peter's office is a real conversation piece. It is filled with beautiful framed pieces of art, all sorts of collectibles, hand carved wooden statues he brought back from his countless trips to Africa, and of course Mattie photos and art creations! 

Peter even has a coffee machine, cookies, and candy in his office for his colleagues to use! Mind you the office has its own coffee machine, but Peter's coffee machine brews flavored espresso. VERY POPULAR!

Peter's shelves have have books, plants (which have taken over and are thriving) and all sorts of Mattie memorabilia. 

I went in with Peter today to start packing up this special space!

What is totally noteworthy is the sign behind Peter's office door. It was created by Mattie and I in 2005, when Peter got his own office. It reads, "Congratulations Daddy, we are proud of you!" Along with these words are all sorts of Mattie doodles! Peter has had this sign for ten years and today I took it down to preserve it. 

Who would think that saying good-bye to an office would be so complex?! But for me it is, because this was another space that Mattie touched and was a part of. Physical spaces are important to me as are certain objects because they hold memories and the spirit of our special boy.