Saturday, November 30, 2013

Saturday, November 30, 2013

Tonight's picture was taken in November of 2008. The day after Thanksgiving to be specific. As I described in last night's blog posting, Peter and Mattie had a post-Thanksgiving day tradition of taking out our holiday lights and decorating our commons area. Each year the light display grew in size. When I tell you our plaza was glowing at night, I am NOT kidding you. In fact, I think our lights inspired other people to decorate their balconies. After Mattie died we stopped putting up lights and guess what???? So have other people around us. Lights inspire more lights!!! One of our wonderful supporters who is a former neighbor still tells me today how much our lights meant to him during the winter season.  


Quote of the day: Despair is the price one pays for self-awareness. Look deeply into life, and you'll always find despair. ~ Irvin D. Yalom


Peter and I are now back in Washington, DC. It took us close to six hours to drive back and we hit all sorts of traffic. Not only traffic, but I-95 Southbound was closed for part of the way. So thanks to GPS and Peter's navigational skills, we found an alternative route home. Needless to say we are thrilled to be out of the car! I am signing off for today. I know holidays are challenging for so many people which is why I hope our readers had peaceful holiday moments.

Friday, November 29, 2013

Friday, November 29, 2013

Tonight's picture was taken in November of 2008. Before Mattie's second limb salvaging surgery. Peter and Mattie had a wonderful post Thanksgiving tradition. Some people go shopping and are looking for the best sales on Black Friday. That wasn't what was happening in our home. Instead, the day after Thanksgiving all our Christmas lights would come out of storage and Peter and Mattie would start to decorate our commons area. I suppose technically this area doesn't belong to us, but none of our neighbors ever complained. In fact, just the opposite. Many of them would stop to THANK US for bringing joy and happiness into their lives through beautiful lights. Each year Mattie got a new light to add to the display. In November of 2008, Mattie and Peter selected a Scooby Doo light! Mattie loved Scooby Doo and this was a very meaningful addition. We watched 100s of Scooby Doo's in the hospital. Tomorrow night I will show you a photo of the display they created.

Quote of the day: Thanksgiving Day comes, by statute, once a year; to the honest man it comes as frequently as the heart of gratitude will allow. ~ Edward Sandford Martin

Peter and I had a very slow start to our day today. We are both exhausted. We got to New York exhausted and when I combine that with the intense cold weather, I am just out of sorts. So much so that after I got up, dressed and ate breakfast, I came back upstairs to our hotel room today and went to lie down. Something totally unheard of, once I am up, I rarely go back to sleep.

We are staying at a hotel that means a lot to my family and certainly something to Peter and me. When I was in 10th grade, my family relocated from NY to Los Angeles. This was a hard adjustment and in that first transition year, we flew back and forth to NY often because we missed family and friends. When we would come back to visit, we stayed at the hotel Peter and I are staying in. In addition, when Peter and I got married, this is the hotel our guests stayed at for our wedding celebration. This hotel holds many memories for me, but now I really have to dig QUITE deep to find them. Mainly because everything about the hotel has changed. Everything from the interior and designs, to the service. I do not handle change well, and certainly these types of emotional changes don't make me happy.

Before we met up with my friend Karen and her mom, Peter and I drove passed the two houses in NY that I grew up in. The first house I lived in was located in Hartsdale and my maternal grandfather designed and built that house. I arrived into that house as a baby and left that house when I was about 12 years old, for our second house, which was located in Scarsdale. It is an interesting perspective to go back and visit your old homes. Somehow their physical structure remains the same, but I know I haven't. My perspective has changed and with that, the lens I view these homes also has changed. I always thought I would take Mattie to NY one day and show him where I grew up, but it never happened. You know that old saying..........you can never go home again? I would have to say there is a great deal of truth to that. At the time when I was 14 years old and was transplanted from NY to Los Angeles, I thought my world was ending. Certainly for a teen, this was a hard adjustment but my thinking was I couldn't possibly live anywhere else other than NY. Now as an adult, I realize that was the least of my problems in life. Nonetheless, these are all stories I was planning on sharing with Mattie. Stories which I had hoped he could learn something from, and that we could discuss together. Life lessons.

This afternoon, Peter and I met Karen and her mom, and we headed to the Hudson River Museum in Yonkers, NY. I have to tell you that not only have I never been to this museum, I never even heard of it. But what a delightful gem, an intimate experience, filled with wonderful art, that captures the intrigue of the Hudson River and Westchester County. 

As I was walking around the permanent collection area, I was captured by this beautiful face. Believe it or not this is a painting of a little boy by the name of John James. He died in an accident and I learned today that parents in the beginning of the 19th century commemorated the loss of a child by commissioning a painting of the child. A placard by the painting stated that even in wealthy families, infant mortality rates in the 19th century were high by modern standards. I just couldn't believe this cutie was a little boy. But I also learned that it wasn't until the 20th century that gender specific clothes and colors were defined. So in essence John James and his sister wore the same clothes and it wasn't unusual for a boy back then to wear pink. 

This is NOT a painting!!! This is an actual room that I walked in and around. So basically I walked inside a piece of art today!!! Red (a nick name for artist Charles Roger) Grooms’  dazzling installation, was created as a working gift shop for the Hudson River Museum in 1979.  After extensive conservation, this beloved Westchester landmark has been reinstalled in its own gallery. The Bookstore incorporates many of the themes that run through Grooms’ best work: the marriage of art and commerce, the clash of high and low, colorful New York characters, and an inviting three-dimensional space that envelops and transports the viewer. The Bookstore deftly joins two favorite haunts of New York City book lover – the lively, oldest secondhand bookshop in NYC, the Isaac Mendoza Book Company, and the Pierpont Morgan Library – into a work of art. In terms of materials, The Bookstore was one of a limited number of pieces in which Grooms incorporated vinyl figures. The figures are painted from the inside, a technique inspired by medieval glass-painting techniques, and then are stuffed and sewn. Tens of thousands of visitors passed through The Bookstore, and, embraced by its environment, it inevitably began to suffer ravages caused by its popularity. Plans were developed to restore the work and Grooms enthusiastically approved the conservation efforts and changes, which include altering the position of the two entrances to fit new gallery space, the creation of a central island that incorporated the original vinyl patrons, and the design of a painted floor. 

Attached to the museum is the Glenview Mansion (1876-77), also known as the John Bond Trevor House. The mansion is a Late Victorian-style and is located on a bluff overlooking the Hudson River. It was designed by architect Charles W. Clinton, and contains Eastlake-style interiors and furniture by cabinetmaker Daniel Pabst. It is operated as a house museum by the Hudson River Museum, whose 1960s building was built directly in front of the mansion. It was listed on the National Register of Historic Places in 1972.

John Bond Trevor was a successful Wall Street stockbroker who decided to build a summer home in Yonkers in 1876. He chose a site on the Hudson River, near his friend and business partner, John Boorman Colgate. The home was designed in the High Victorian Gothic style, which included many flamboyant elements. Six of the rooms are on display now and they feature authentic pieces of furnishings and decor. One of the docents explained that a professional specializing in Victorian design comes to the mansion each holiday season to dress Glenview up in style.  

This is the mansion's sitting room. The interior design follows the Eastlake style, which incorporates abstracted designs inspired by nature, such as the carved and inlaid sunflower details of the woodwork. Glenview is considered one of the finest examples of an American Eastlake interior open to the public. Delicately incised birds eye maple cabinetry is a notable feature of the Sitting Room.

The dining room.

Children visiting the museum today were thrilled by this display!!! A recent gift to the Hudson River Museum was a dollhouse created by enthusiast Mark O’Banks over the course of a decade. Some of the architectural elements of the 26 room dollhouse were suggested by nineteenth-century houses in the Hudson Valley as well as sites around Washington, D.C.

Creator Mark O’Banks looked to the wisdom of a ouija board to name his dollhouse creation (Nybelwyck Hall). The house is furnished with found objects and rugs O’Banks designed. Among its 900 objects are minute musical instruments that play, doors with intricate locks that work, and a tiny dollhouse within the dollhouse’s nursery.

The special exhibit today was entitled, Industrial Sublime:
Modernism and the Transformation of New York’s Rivers, 1900-1940. Because these paintings are on loan to the museum, I was unable to take photos. This was a wonderful exhibit which truly captured how the industrial age influenced our times and therefore our art. No longer were artists painting landscapes but instead featured factories, shipping, docks, and smoke stacks. In essence the age of machinery. 

The movement away from painting the land to painting the life on the street is often seen as a clean break with the depiction of the landscape, and with landscape painting generally as a mainstay of American art in the face of European Modernism. However, artists continued to paint the Hudson River, as well as its tributaries, the Harlem and East rivers, and the great harbor of New York City into which they flowed. What was different was their approach. Having jettisoned the romantic ideals of their forebears, artists like Henri and Sloan, and later, Georgia O’Keeffe, George Ault, Edward Hopper, and Preston Dickinson, celebrated the changing way of life along the city’s waterfront. As the century progressed, they did so with sharper focus and with ideals borrowed from the Machine Age. Instead of majestic mountain ranges, their subjects were the arching bridges, swinging cranes, and streamlined ocean liners resting in the harbor. Artists took the elements of the Sublime, combined them with Modernism’s interest in structure and form, and applied them to the man made industrial one—thereby creating a new visual vocabulary for the 20th century ─ the Industrial Sublime.

The museum and of course Glenview sit on a hill overlooking the glorious Hudson River. Though it was cold and at times bleak looking today, there is something very therapeutic about the water. 

While in the museum, I began talking with another docent. This fellow is intrigued by science and art and he is using his creativity to try to artistically get children interested in science. This whole notion caught my attention because I view art as a very hands on process and also I think the best way to learn something is through a visual. So his whole concept intrigued me. I asked him how he got interested in science and studying the elements on the period table. Want to know the answer?!!! The answer is he is a childhood cancer survivor and he needs to make sense out of the chemicals placed in his body as a child that have helped him survive. Needless to say he was talking my language. As Karen said to me, if someone has a story to tell, especially a cancer story, I am going to find it. I am not sure about that, but I have no doubt he probably thought I had no idea about childhood cancer or about his experiences. I did not tell him about Mattie, I was instead listening to him. But one thing is for certain, it was because of Mattie, I understood this man's passion on a deeper level. 

Thursday, November 28, 2013

Thursday, November 28, 2013 -- Happy Thanksgiving to our readers!

Tonight's picture was taken in November of 2008. A friend gave Mattie this wonderful turkey hat and as you can see Mattie decided to wear it in celebration of the Thanksgiving day season. On Thanksgiving of 2008, (our last Thanksgiving with Mattie) Mattie was home from the hospital. Hospitals work very hard to get you discharged before any major holiday, if it is at all possible. That is a mixed blessing especially if you are balancing pain, recovery, and a host of profound psychological issues. In all reality we would have been better off in the hospital for that Thanksgiving. Peter and I had our hands full at home. Mattie was recovering from his second limb salvaging surgery, he was in terrible pain, and worse Mattie's medical post traumatic stress symptoms began. It was beyond challenging and heart breaking for Peter and I to see Mattie this clinically depressed, anxious, and basically traumatized. These are memories that are real and are alive within us, and I could try to use every word possible to make these feelings and observations  a reality for our readers, but I do not wish this upon you.


Quote of the day: He who thanks but with the lips thanks but in part; The full, the true Thanksgiving comes from the heart. ~ J.A. Shedd


Today Peter and I are driving to New York to visit my lifetime friend, Karen, and her mom. Last year we started a new tradition of spending Thanksgiving together. Because we will be driving and today is a holiday, I decided to post Mattie's blog in the morning. To all our faithful readers and supporters, we wish you and your families a very happy Thanksgiving.

It can be a very challenging effort for parents who lost a child to cancer to feel grateful for anything quite frankly. With that said, when one stops and deeply reflects, we all have something (no matter how small or big) to be thankful for. I speak for both myself and Peter..... we Thank You!

Wednesday, November 27, 2013

Wednesday, November 27, 2013

Tonight's picture was taken in November 2006. Mattie was four years old and one of the things he loved to do was paint. Painting in our living room to be exact. It was not an unusual sight for newspaper to be on the floor, paint out, and Mattie working away. The funny moments were when Mattie would paint with his feet. He actually created some beautiful creations that way. However, I was fortunate because Mattie was a neat kid and appreciated the fact that if he ran around with paint on him, it would get over rugs and furniture. Which made my clean up of the area and him much easier. Literally there were times I would pick Mattie up from the newspapers and bring him directly into the kitchen sink to clean up and remove his clothes with paint. With Mattie it was never boring!

Quote of the day: There is a difference between interest and commitment. When you're interested in something, you do it only when it's convenient. When you're committed to something, you accept no excuses, only results. ~ Kenneth H. Blanchard


I found tonight's quote and immediately it resonated with me. Throughout my life I have been committed to various causes and forms of work. Part time jobs for me were always a riot, because I put in more hours than those who worked full time jobs. The only difference of course is I wasn't paid for all my hours! The joke when I was in graduate school was.... Vicki must never sleep! My response to that was always.... yes I sleep eventually. But giving 100% is always important to any task or assignment I take on, and I most likely won't take something on if I can't do it right. Attention to detail is important and this level of pride in one's work is how we leave our personal mark on things.

I am not simply interested in the Foundation, nor does it just occupy my time. I am committed to the Foundation and helping others, but always my motivation or core focus is Mattie's memory and his courageous battle. When I read Blanchard's quote tonight, it spoke to my frustrations at times. I expect everyone who works with Mattie Miracle to have the same passion, the same drive, and the same tenacity. Naturally I know this isn't possible or realistic, but there is something to be said to the fact that when there is a will there will be a way.

I was literally glued to the computer all day, jumping from administrative Foundation issues, to brain storming with a board member about other psychosocial areas for us to pursue. It is amazing when you brainstorm, what pops up. This board member has a way of putting into words what he observes me doing and what is missing from cancer care. I may know these things, but when someone else voices them and points out that the direction the Foundation is going is crucial, it makes me take notice. Needless to say as we approach Thanksgiving, I am deeply grateful to all those in our life who find the time to spend with us and the Foundation, and help us make a difference in the psychosocial care of children with cancer.
 

Tuesday, November 26, 2013

Tuesday, November 26, 2013 -- Mattie died 219 weeks ago today.

Tonight's picture was taken in November of 2006. Mattie was like a ball of fire in so many ways, it was hard to get him to sit still and take a photo. But that never stopped me. Mattie got used to me after awhile and realized the camera was just going to be a part of our daily existence. Now looking back on all of this, I am so glad that I was insistent on capturing certain moments in time. Photos are all we have left now and in many ways I chronicled Mattie's life from birth to death. That wasn't my intention at the time but I can't even imagine where we would be today without these photos.


Quote of the day: Perfection of character is this: to live each day as if it were your last, without frenzy, without apathy, without pretense. ~ Marcus Aurelius

I started my day by going to zumba class. Myself and the teacher were the only ones who showed up for class. Everyone else was most likely preparing or traveling for Thanksgiving. As I told Jenny (my teacher), it doesn't even feel like Thanksgiving to me. Each day is one in the same for me, the only difference of course is the outside temperature. There were torrential rains in the DC area today and there were workmen fixing the roof of the dance studio, so literally we were unable to have class. So instead Jenny and I went down the block for tea. As some of my faithful readers may recall, Jenny's daughter and Mattie were in the same kindergarten class together. So Jenny and I go back a while. Meaning she is more than just my dance teacher. I think tonight's quote is so applicable to my morning. Jenny is a mom of two and her kids are out of school as of tomorrow, yet instead of canceling class and running to the next task, we instead stopped to sit and chat together. That may not mean a lot to others, but the gift of someone's time means a great deal to me. In fact, it is better than any gift one could buy me.

Later in the afternoon, I went to Peter's office to meet with one of his colleagues who is a social media guru. She sat with me for 90 minutes and helped me understand Twitter and how to us it. Mattie Miracle has a Twitter account and Peter currently maintains it. But since Peter works full time, it is hard for him to juggle things during the workday. Therefore, I have to get smart on technology.
 
Any case, I haven't visited Peter's office in quite some time! I remember taking Mattie a couple of times to visit Peter and I know how much they both enjoyed those moments. I thoroughly enjoyed all of Peter's shelves and nick knacks that he has on display. It was like a walk down memory lane because some of Mattie's art work I didn't remember until I saw it. This canvas designed by Mattie was a painting of him and Peter together. Peter is the one with the glasses! But Mattie's telltale signs are ALL there...... the sun, a blue sky, and ground! The rocks and coral were all collected by Mattie, and the other items are Foundation items.

I personally forgot about Mattie's pumpkins and this teamwork clock was a gift that I gave out to all my association board members back in the summer of 2008, when I became the president of a national association. Again, another thing I forgot until I visited Peter's office.

This spider plant is an offshoot of a much larger spider plant we have at home. However, my spider plant became infected and therefore this is the only remaining piece of it left. Why is this noteworthy? Well it is noteworthy because I found the mother spider plant at Boston College years ago while in graduate school. The mother spider plant has been with me all these years, until recently. I was so happy to see this spider baby alive today. Even more meaningful is the pot. Mattie painted this flower pot in preschool for Mother's Day! So this would have been Mother's Day of 2006. Notice the butterfly stick inside of it, in which his teacher wrote on it..... Mattie Moon!

The final photo of Peter's office that I will share with you tonight is this Mattie sign. When Peter started working for his current company, we made this sign for him. As you can see it was on October 24 of 2005. I had no idea that Peter kept the sign and that it is on the back of his office door!

I thought I was going to learn about Twitter today, but in addition to that, I got to experience Mattie in a whole new way! A way that Peter sees each day.

Monday, November 25, 2013

Monday, November 25, 2013

Tonight's picture was taken in November of 2007. Mattie was visiting his paternal grandparents and that evening he and his cousin Will decided to help with the dishes! These two were a riot together. I am not sure what was funnier, the fact that these two were doing the dishes or that they both decided to put on rubber gloves to accomplish this task!


Quote of the day: And I know that I am. I am his moon, and his brightly shining star. I am his life, his heart. I am all that and the answer to every unspoken question, the comfort for every hurt, the companion who will walk beside him from now until the end of our lives, reveling in the bliss of each simple chore done in his name. ~ Stacey Jay


Though this quote was not written about motherhood, or my connection to Mattie, it nonetheless could have been. As soon as I read it, I identified with the moon, the stars, and the comforting of too many hurts, and of course the "chores" done in his name. Some days to manage the Foundation requires a whole team, not just a staff of one, yet always the driving force for us is MATTIE.

I literally spent the entire day in front of the computer. Working on our Foundation's annual drive campaign and other items. Now that I have a desk to sit at and a working space of my own, I can't imagine what it was like to work and be organized around our small kitchen table.

In the midst of working today, I came across an article that was written by  Rich, the Executive Director of the American Counseling Association. To put this article into context, it is of value for you to know that when Mattie was diagnosed with cancer in July of 2008, I had just been elected the President of the American Mental Health Counselors Association (AMHCA). A National professional association representing 6000 mental health counselors. Though AMHCA is its own association, it is also one of the largest divisions under the American Counseling Association (an association with over 60,000 members).

I had gotten to know Rich years before I was elected to my position. In fact, I knew Rich when I was a graduate student and then by coincidence our sons (he also has an only child) landed up at the same school. Washington, DC is a big place, and yet small at all the same time. Any case, during Mattie's battle, Rich was in touch with us and was part of our care community and when Mattie died, Rich wrote this article in the association's monthly publication. The title of the article was Resilience and Moving Forward. I included it below in case you want to read it.

However what I would have to say is that dealing with the loss of a child is a constant struggle with regard to finding one's resilience. Almost on a daily basis. But with each subsequent year since Mattie has passed away, other challenges arise making it very hard to "move forward." Or maybe I should say that moving forward doesn't necessarily occur in a linear fashion, more like a jagged or crisscrossed one. It is the lack of predictability that can continually cause a grieving parent to become out of balance, and I must admit that this feeling becomes even more pronounced around the holiday season.

Resilience and Moving Forward
http://ct.counseling.org/2010/03/from-the-executive-director-resilience-and-moving-forward/

Sunday, November 24, 2013

Sunday, November 24, 2013

Tonight's picture was taken in November of 2007. That weekend we went for a walk on Roosevelt Island. Peter snapped a photo of Mattie and I on the bridge, most likely after our walk was complete. I can come to that conclusion based on the simple fact that I was carrying a HUGE leaf. Most likely a prize Mattie acquired on our journey. We never left the Island empty handed!

Quote of the day: Take responsibility for your own happiness, do not expect people or things to bring you happiness, or you could be disappointed. ~ Rodolfo Costa

Today I ventured over to my colleague's house in Washington, DC to attend her jewelry party. Laurie is a full time psychotherapist, but in her spare time she makes jewelry. I have known Laurie for over ten years. We first met as board members of the DC Mental Health Counselors Association. Now we both serve on the DC Board of Professional Counseling, which oversees the licensure of professional counselors in the District of Columbia. During our last board meeting, Laurie mentioned to me that she wanted to host a jewelry party and give 20% of her proceeds to Mattie Miracle. I was very honored by her thoughtfulness and generosity. The 20% is not just today, but through December 31 on her website (www.jewelsinthelotus.com).

On Thursday during the Fox 5 interview of our candy drive, my trusty camera literally fell out of my hands and cracked open. So I am operating now without a camera. That may not sound like a big deal, but for me it is! I have had a camera in my purse since Mattie was born. So I unfortunately couldn't take photos today, but I am so happy Laurie and her friend snapped a few! This is a photo of Laurie and me together.

A close up of us! I had the opportunity to meet several of Laurie's friends today and to introduce them to Mattie Miracle. There is an art form to interacting with new people who are unfamiliar with the Foundation, especially when they are at a party to buy jewelry. Some came to support Laurie and to buy jewelry, not necessarily to hear about cancer, and childhood cancer of all things. Nonetheless, I have gotten quite good over the years at determining who wants to hear more about the Foundation and who really would prefer not to, which is fine too. Pushing information and stories onto others is not my goal, especially at a party. If asked I will respond, otherwise, I try to participate in the conversations and just mingle. 

At the end of the evening, one person said to me that I must be happy to receive the 20% from today's sale, in that it will go toward paying my salary. That I felt like I had to clear up ASAP! I explained to those listening that I do not receive a salary for the work that I do, and the funds that we do raise go directly to supporting children with cancer and their families, or toward our national campaign for a psychosocial standard of care. They were surprised to hear this. But remember some of these ladies were my former colleagues, so as they told me, in their eyes I am very talented and can accomplish anything. So in their minds that means I should be compensated for what I do even now. I understood and appreciated the compliments.