Friday, December 25, 2015

Friday, December 25, 2015

Tonight's picture was taken in December of 2007. Mattie was five and a half years old. It is hard to believe that seven months after this photo was taken Mattie was diagnosed with cancer. This photo was on the cover of our 2007 Christmas card and as you can see Mattie wanted to feature his reindeer headband and his Christmas train! 


Quote of the day: My idea of Christmas, whether old-fashioned or modern, is very simple: loving others. Come to think of it, why do we have to wait for Christmas to do that? ~ Bob Hope


Today marks the seventh Christmas we have acknowledged without Mattie in our lives. If you think it gets easier, it doesn't. In fact, I would argue that it gets harder. Let me put this further into context. We celebrated 7 Christmases with Mattie, and today marks our 7th Christmas without him. This to me is daunting, knowing that Mattie is gone from our lives longer than he is a part of our lives. 

Last night, Peter and I went to a holiday dinner. Typically I do not attend such events for many different reasons. First of which celebrating holidays isn't easy for us, second I do not like being around children, and third inevitably at parties people ask questions about children. Sure enough, we had two unpleasant incidences at the party. One woman was telling me about her children and I was listening and asking questions. Naturally, the next question to me was.... tell me about your children and how many do you have?! 

There are many ways I could have answered this question, REALLY! But I also believe that if you ask a question, you should be ready for all kinds of responses. Why is it socially acceptable for me to have to listen to parents talk about their children incessantly, and YET it is deemed inappropriate for me to talk about my child who had cancer and died? I of course know the answer, but there are times I am SO flabbergasted that I need an outlet to express my frustration.... and the blog is the place!

In any case, back to my story. At the party, when this woman asked me about my children, I told her in a very simple and dispassionate manner that I had a child but he died from cancer. I can tell you this woman did not even bat an eyelash, but within seconds she disengaged with me and WALKED AWAY! Nice, no? If I had any doubt or hesitancy about attending parties, I can say that encounters like this just reinforce my feelings. MY FEELINGS THAT I AM DIFFERENT AND REALLY DO NOT DO WELL INTERACTING WITH THE OUTSIDE WORLD. A world that doesn't understand the loss of a child to cancer. 

That was part one from the party, which was bad enough. Part two only got worse. While sitting down at dinner, a man at the party started talking to Peter. He asked Peter about his family! So Peter told him about Mattie and how we lost him to cancer. Instead of expressing sympathy, we got the exact opposite. I was overhearing the conversation, so I was an indirect recipient. Unlike the woman who walked away from me, this fellow couldn't run because he was eating dinner. Instead, of just saying he was sorry, he did one of the WORST things I think people can do with people who have experienced a traumatic loss... he started dolling out platitudes! He told us that it was time for us to MOVE ON and we have to focus on the POSITIVE!!! 

Though all of this happened yesterday, I am STILL besides myself over both actions. It makes me truly dislike Christmas and those around me even more, and it is in moments like this when I need a lot of space, quiet, and time away from the world to regroup. 

Today Peter cooked a ham
for his family. I snapped a photo of Peter's creation.

This is a photo Peter took of us at the dinner table this evening. From left to right are: Nat (my nephew), Chris (my brother-in-law), Don and Barbara (my in-laws), Will (my nephew), Lisa (my sister-in-law), me, and Sydney (my niece).

My nephews and niece were close to Mattie's age. Especially Will, who is about a year older than Mattie. It was quite bittersweet to watch my nephews and niece (who grew up with Mattie) opening Christmas presents today, not to mention hearing about their lives and accomplishments. Naturally I can be happy about all of this, because I want them to succeed, grow, and develop..... but on the other hand, it is hard to rationalize what happened to Mattie. 

I end tonight's posting with this photo. My lifetime friend, Karen, sent this to me. The lady in pink sitting down was my maternal Grandma. This gathering was to celebrate her 80th birthday! The two women behind my grandma are Marian (who was my mom's friend and a high school science teacher) and Naomi (my friend and Karen's mom). 

My Grandma and Marian are now gone and though this is bittersweet, I remember these ladies fondly, because they were both special to me. 

Thursday, December 24, 2015

Thursday,  December 24, 2015

Tonight's picture was on the cover of our December 2006 Christmas card. Mattie was four and a half years old and by that point he LOVED trains. The Christmas train in the photo with Mattie was one of his favorites! He loved having a track around the tree and he especially loved switching the train on and seeing it go around the track, play Christmas music, and puff out smoke!


Quote of the day: Christmas is not a time nor a season, but a state of mind. To cherish peace and goodwill, to be plenteous in mercy, is to have the real spirit of Christmas. ~ Calvin Coolidge

To all our faithful readers, I want to wish you and your family a very Merry Christmas. I took this photo today during a walk, and I felt that this cardinal was the perfect snapshot for the season. It was hard to believe that it was 70 degrees today in Boston. 

Though I am not wild about the holidays or Christmas anymore, I do enjoy being able to walk outside and see signs of nature, which connect me to Mattie. Here are some of the photos that captured my attention!

Who would believe that we could see frogs in December? This fellow was sitting on a log, just begging for a photo!

How do you like this Christmas Turtle? Stretching his neck to the sky and appreciating the temperature!

Of course my favorite stop on the walk was to see Rocky, the horse. His stable is right near the nature walk! I am quite certain that Rocky recognized me from yesterday and when I walked away, he let out with one long and big NEIGH! 

Wednesday, December 23, 2015

Wednesday, December 23, 2015

Tonight's picture was taken in December of 2005. We took Mattie to one of his favorite restaurants in Maryland. He loved it because it had an adorable pond near the restaurant's entrance and it was filled with turtles and fish! When Mattie got antsy sitting and eating, we would occasionally walk with him outside the restaurant. This photo was on the cover of our Christmas card in 2005!


Quote of the day: He who has not Christmas in his heart will never find it under a tree.  ~  Roy L. Smith

It is the moment Peter and I have been waiting for!!! After four years of incredible work and effort, Mattie Miracle is proud to announce that the Psychosocial Standards of Care for Children with Cancer and Their Families has been published today in Pediatric Blood & Cancer. We feel this is timed beautifully with the holiday season, as it is our way to truly memorialize Mattie and use our experiences with his battle to meet the psychosocial needs of children and families throughout our Country.

The need and creation for a set of psychosocial Standards were our vision, based on our experiences with Mattie who heroically battled cancer for 14 months. The publication of the Standards in a tier 1 Medical Journal represents an historic event. The four year-long project to develop the Standards involved reviewing two decades worth of research, encompassing over 13,000 articles that were meticulously evaluated and graded for inclusion in the body of evidence to support the recommendations made for each of the Standards.

These Standards bring us one step closer to ensuring that children with cancer and their families will have access to psychosocial care throughout their cancer journey. We are very grateful to our core psychosocial leaders (Dr. Lori Wiener, NCI; Dr. Mary Jo Kupst, Medical College of Wisconsin; Dr. Anne Kazak, Nemours Children's Health System; Dr. Bob Noll, University of Pittsburgh; and Dr. Andrea Patenaude, Dana Farber), the entire team of over 60 contributors of this work, and of course our supporters who helped to fund this historic project.

Pediatric Blood & Cancer, created a supplement edition of their journal to house ONLY the Standards! There are 16 chapters. The first chapter is an overview of the project and Standards and the remaining chapters cover each of the 15 Standards. 

Mattie Miracle funded the entire publication and has paid for open access to the Standards, so that the public could read and access the Standards indefinitely:


http://onlinelibrary.wiley.com/doi/10.1002/pbc.25675/abstract

With the Standards being published today, this meant that we had to spend some time by the computer publicizing the Standards on social media! Peter and I took turns on the computer today, but this afternoon while Peter was working, I went with Peter's parents for a walk around Horn Pond, a 102-acre water body in the next town over.

I snapped a photo of this adorable Christmas tree in the woods. Right next to the tree is a memorial bench in honor of someone's brother who died. So I assume it is the family decorating the tree in honor of their loved one! 

I did not bring my camera with me today, but with my phone, I did capture some photos. We saw all kinds of things on our walk today.... turtles, hooded merganser ducks, mallard ducks, swans, cardinals, a great blue heron, and even a kingfisher. 

One surprise along the way was I even met Rocky, the horse. His owner was riding him through the woods and we had an opportunity to chat and meet Rocky. Rocky apparently isn't a friendly sort and he likes to dominate other horses. Yet Rocky and I seemed to have a rapport. His owner said that no one wanted this horse because he is so difficult to care for, which is why I told him he was the horse whisperer! Which he thought was funny. 

Tuesday, December 22, 2015

Tuesday, December 22, 2015 -- Mattie died 327 weeks ago today. 

Tonight's picture was taken in December of 2004. Mattie was two and a half years old and I would say by that point, he got the notion of Christmas and what it was about. Mattie enjoyed decorating, adding his handmade ornaments to the tree, and basically everything about the tree. This was the photo on the cover of our Christmas card in 2004!


Quote of the day: If you deliberately plan on being less than you are capable of being, then I warn you that you’ll be unhappy for the rest of your life. ~ Abraham H. Maslow


Today we went to the Museum of Fine Arts in Boston and saw an impressive exhibit entitled, Class Distinctions, Dutch Painting in the Age of Rembrandt and Vermeer.

This groundbreaking exhibition proposes a new approach to understanding 17th-century Dutch painting. Through 75 carefully selected, beautifully preserved portraits, genre scenes, landscapes and seascapes borrowed from European and American public and private collections—including masterpieces never before seen in the United States—the show reflects, for the first time, the ways in which paintings represent the various socioeconomic groups of the new Dutch Republic, from the Princes of Orange to the most indigent.

Nobles, merchants, and milkmaids are among the figures in the thematic groupings, reflecting the social order of the new Dutch Republic. Viewers are encouraged to look closely at the images for clues that differentiate a mistress from a maid, or might distinguish a noble from a social-climbing merchant.

A final section explores the places where the classes in Dutch society met one another. Opportunities for these encounters arose in the city and the country, winter and summer, indoors and out, at leisure or at work, on the threshold of a house or of a business. Paintings depicting the meeting of the classes are among the liveliest of the era.

Street Musicians at the Door (Jacob Ochtervelt)

This was an absolutely incredible painting that was exhibited in the third room, the room which housed paintings that depicted how the different social classes interacted. In Ochtervelt's painting, you can see a wealthy family inside their home. The woman of the house (seated left) was dressed in bright and rich colorful fabric. Her daughter and daughter's caregiver were on the right. Notice the bright and crisp lighting used to showcase this family. Whereas the two street musicians who have come to the threshold of the front door to entertain the family were depicted in more earth tones and the lighting is subdued. The threshold served an important purpose because it was understood that this was as far as the musicians were allowed to go, since it would have been socially unacceptable for them to enter the home. But the painting depicts the Christian value of charity. If you look closely at the woman on the left, she was holding a coin. The caregiver pointed in the direction of the seated woman. She was trying to signal the little girl to approach her mom and take the coin, in order to give the coin to the musicians. Frankly if I did not have the audio guide, I am not sure I would have figured out the messages artistically transmitted through this art work..... between light and how social classes were expected to interact with one another.

A Lady Writing (Johannes Vermeer) portrays a privileged woman engaged in the art of letter writing. The activity was associated with a certain level of education, and her clothing and belongings denote wealth.

Regents of the St. Elisabeth Hospital of Haarlem (Frans Hals)

This group of wealthy men comprised the board of a local hospital. It was the way that Hals depicted these men at the table that enables us to understand who was the leader and person of prominence in the group. The man sitting closest to us, not behind the table, was the president of the board. Unlike the other men, he has no shadows on his face, but his face was brightly illuminated . The man on his right was seated with coins in front of him, and therefore was the treasurer of the board, the man opposite the president had paper and a pen in front of him, indicating that he was the board's secretary. 

Monday, December 21, 2015

Monday, December 21, 2015

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and trying to capture him in photographic form was a riot! It was a riot because Mattie never stopped moving!!! So that year, we literally went to Lowe's and Home Depot. We placed Mattie in a shopping cart and wheeled him around the holiday decorations. Mattie always liked going to Home Depot type stores, so he was comfortable in that surrounding! Unlike a MALL! I am sure people in the store thought we were nuts. We took Mattie's coat off and were snapping LOTS of photos of him. Needless to say, this was the photo that went on our Christmas card in 2003. 


Quote of the day: The only man who never makes mistakes is the man who never does anything. ~ Theodore Roosevelt

Today is Peter's mom's birthday! To celebrate the day, we drove to Rhode Island. Which is about 90 minutes away from Boston. We went to tour The Breakers, a mansion I have always wanted to see.

The Breakers was built as the Newport summer home of Cornelius Vanderbilt II, a member of the wealthy United States Vanderbilt family. It is built in an Italian Renaissance style. Designed by renowned architect Richard Morris Hunt, with interior decoration by Jules Allard and Sons and Ogden Codman, Jr., the 70-room mansion has a gross area of 125,339 square feet and 62,482 square feet of living area on five floors.[3] The house was constructed between 1893 and 1895. The Ochre Point Avenue entrance is marked by sculpted iron gates and the 30-foot-high (9.1 m) walkway gates are part of a 12-foot-high limestone-and-iron fence that borders the property on all but the ocean side. The footprint of the house covers approximately an acre of the 13-acre estate on the cliffs overlooking the Atlantic Ocean.

The Vanderbilts had seven children. Their youngest daughter, Gladys, who married Count Laszlo Szechenyi of Hungary, inherited the house on her mother's death in 1934. An ardent supporter of The Preservation Society of Newport County, she opened The Breakers in 1948 to raise funds for the Society. In 1972, the Preservation Society purchased the house from her heirs. Today, the house is designated a National Historic Landmark.

The road signs right in front of The Breakers! Loved the Victoria sign!!!

The Front Gate entrance to The Breakers! The entrance is regal and impressive and it gives you the feeling that you are going to experience something VERY grand! 

The Breakers captured the The Gilded Age in United States history (the late 19th century, from the 1870's to about 1900). The term was coined by writer Mark Twain in The Gilded Age: A Tale of Today (1873), which satirized an era of serious social problems (between of course the wealthy and working class) masked by a thin gold gilding.

The Preservation Society does not allow photos inside the house. So I downloaded this photo from Google to give you the feeling for the grandeur of the Grand Hallway/entrance. The mansion is filled with gold gilding and the audio tour that they give visitors is incredible. It gave all of us an outstanding feeling for how this incredible house was built in two years time, and how the lives of the wealthy and the house staff differed. It truly was like I was walking through Highclere Castle, where Downton Abbey is filmed in England. 

There are two places inside the mansion that they allow photos. One is by this beautiful poinsettia Christmas tree and another is upstairs in the Loge, which is like the terrace.

The mansion was gloriously decorated for Christmas with trees and lights in every room, not to mention a room with gingerbread masterpieces and running toy trains. 

The gingerbread houses were created by master pastry chefs. Each house was a replica of one of the Newport Mansions. This cutie is Chepstow (another mansion). 

When you look outside the loge terrace, you see the Narragansett Bay, the incredible lawns, and my favorites.... Canadian Geese!

As we were leaving the mansion, we passed this beautiful sight of the beach and the Bay! Though December, it was worth the picture!

We asked The Breakers staff today where to head for lunch! They recommended without a doubt, La Forge. What a great setting and wonderful food. I can see why Giada recommends it! it is situated on the grounds of the International Tennis Hall of Fame, the Crowley family of Newport have owned and operated it for over thirty-five years. Named after the original owner, La Forge, the restaurant's menu, style and friendly atmosphere reflect the Crowley family's Irish heritage.

Sunday, December 20, 2015

Sunday, December 20, 2015

Tonight's picture was taken in December of 2007, in front of our family's first Christmas tree. Mattie of course did not get the whole concept of what was going on, but nonetheless, we captured many photos of Mattie to celebrate the occasion of his presence in our life. 




Quote of the day: Imagination is more important than knowledge. Knowledge is limited. Imagination encircles the world. ~ Albert Einstein

Today we drove to New Hampshire to go antique shopping with Peter's parents. Here is a funny story! One time we took Mattie on a trip to New Hampshire. Mattie was intrigued by the sound of the name and tried to repeat it, however what came out was New Hamster! So to this day, the Granite State will always be known as New Hamster to us. While shopping today, I took out my camera and captured some sights that Mattie would have enjoyed or things that just made me laugh! 



The first Mattie sighting was this Santa train. Mattie loved Lionel trains and he most especially loved his Santa train that always went around our Christmas Tree. If Mattie were with us today, I have a feeling this train would have been added to his collection.  

There were cases and cases of Lionel trains all around us today! All of which reminded me of Mattie. In fact, when I saw the train above, I literally stopped and paused quite some time because I just did not know what to do with what I was observing. It wasn't like I could buy the train! So instead, like I always do I took a photo of it. 

Here was a great Circus Train!

Meanwhile, at the store, I noticed so many things about the people shopping with us. It was noteworthy. People were friendly, were in the Christmas spirit, were singing or whistling along to the Christmas music that was piped into the store, and just seemed to be united with similar interests and values. I mention this because in DC, this type of unity and spirit isn't really felt or seen. 

Okay, now for two funny things I saw. The first one was an Alligator bag made in the USA. To me this is a hoot. It included the head and the feet (on the back of the bag) of the alligator. Honestly I have to ask..... who used this or would buy it???? 

My all time laugh today came from the "Old Croak" Whiskey Bottle. Of course when you look at this you are troubled. Is it really embalming fluid like it says on the bottle or what??? It is the or what! If you look closely on the bottom of the bottle is says, Orange Blossom Honey from Florida.

Can you imagine honey in a whiskey bottle? Well it turns out that some people put orange blossom honey in Bourbon or Whiskey to give it a honey flavor without the sweetness. I DIDN'T know this, but with the help of Google I was able to put this dead crow into context! 

Now why this bottle intrigues me I am not sure! Maybe the name, the crow, and the fact that it is really honey in there!

We went to Joey's diner (Amherst, NH) for lunch today. It is a 50's type diner and what captures your attention right away are the antique toy ride-on cars that are on display all over the restaurant. Again it would have been another Mattie favorite!