Saturday, April 16, 2016

Saturday, April 16, 2016



Tonight's picture was taken in April of 2009. Mattie was home between treatments and as you can see Mattie's room was being transformed with toys and gifts he received throughout his cancer journey. In addition, Mattie had me pull out every blanket possible so they we could build tunnels and tents. Though Mattie couldn't walk, he managed to scoot around on his bottom. 







Quote of the day: Doing for others takes the focus off you, and this is so freeing of the weightiness of the frustrations and emotions that you feel. ~ Jennifer Roskamp


Today we drove to Bristol, Rhode Island and had the opportunity to tour an amazing mansion and arboretum. The name of the property is called Blithewold!

In 1895, Augustus Van Wickle and his wife, Bessie Pardee Van Wickle, purchased 70 acres of waterfront land in Bristol, RI and named it Blithewold (Old English for “happy woodland”). They built a large, Queen Anne style mansion, and moved in during the summer of 1896. They would reside at Blithewold from May until November.  Bessie hired John DeWolf, Bristol landscape architect and Superintendent of Prospect Park, New York City, to help implement her vision of a horticultural sanctuary. 

Blithewold is a 33-acre summer estate with grand views of Narragansett Bay, is nationally significant in American history as one of the most fully developed and authentic examples of the Country Place era. The property features a 45-room mansion filled with family heirlooms framed by a series of lovely gardens that range in character from mysterious to exotic and from poetic to practical. 

There are several Giant Sequoia trees on the property! Typically they are seen in California. But there are several that were planted in 1911 at Blithewold and they stand at over 90 feet tall. I think we help to give this tree SOME scale!

This stone archway in the gardens caught my attention and I snapped a photo of Peter with his parents.

Blithewold, named in Yankee Magazine's 2010 Best 5 Public Gardens in New England. It is 33-acre seaside estate with over fifty thousand daffodils that delight visitors for nearly a month.

It was Daffodil Day at Blithewold and all I can say is WOW! There are over 50,000 bulbs planted and when I tell you, there is yellow everywhere I am not kidding. It was stunning. 

Get the feeling for the fields of daffodils?!

Daffodils close up! Their faces were all colors. Some had yellow inside, some white, and some orange. 

This was the Living Room
at Blithewold. This is where the Van Wickles entertained and socialized with visitors. It was a grand room that had amazing views of the Bay. 

The first Blithewold burnt to the ground. But Mrs. Van Wickle had it rebuilt in the early 1900s. The modern conveniences in the home are amazing, such as this elaborate kitchen. What you may not be able to see is the incredible fine bone china sets on display in the cabinets. All of the furnishings and items in the house are original. 

The Van Wickle's had two children. The eldest daughter, Marjorie inherited the house and bought out her sister's portion of the house. The curator at the house explained to me that Marjorie was the level headed and practical child and Marjorie viewed her younger sister as frivolous. Needless to say, when the parents died, the in-fighting over money and the house caused permanent separation of the sisters. 

This was the garden room in the house in which they now serve tea to visitors on fine china! Clearly with a beautiful view of the Bay. 

The 33 acre estate does not disappoint. It was a beautiful walk that even included a Japanese Garden, filled with cherry gardens. The perfect setting for a Monet painting. 

Friday, April 15, 2016

Friday, April 15, 2016

Tonight's picture was taken in April of 2009. Mattie was in the child life playroom and performing a magic show for several of his psychosocial care providers. Mattie was learning magic that year from the "magic man," otherwise known as Bob Weiman, Mattie's head of the lower school. Bob learned these skills from his own dad and we were so honored that he was passing these unique skills down to Mattie. The trick Mattie was performing was the engagement trick. Bob actually did such a trick when he proposed to his wife. This is NOT an easy trick, but Mattie got it immediately! Mattie had very good fine motor skills. 



Quote of the day: We are prone to judge success by the index of our salaries or the size of our automobile rather than by the quality of our service and relationship to humanity. ~ Martin Luther King, Jr.

This morning Peter and I presented with three of our researchers at the Association of Pediatric Oncology Social Worker annual conference. Pictured with us from left to right are
Wendy Pelletier (Alberta Children's Hospital, Canada), Lori Wiener (NCI/NCI), and Barbara Jones (Assistant Dean of Health Studies, and Co-Director of The Institute of Grief at University of Texas, Austin). All three of these professionals are social workers. 

We presented for 90 minutes. In which we shared stories about Mattie, discussed our Foundation, history of the Psychosocial Standards of Care project, the methodology to create the Standards, and the next steps to get the Standards implemented. It was a very full agenda but it was met with great interest, questions, and the desire to participate in a survey that our group designed. The survey will be sent out on the Association's listserv and will capture data from treatment sites all over the Country. Specifically the survey will assess how each of the 15 standards are currently being implemented, if at all, at treatment sites. 

After our presentation, we were greeted with a standing ovation! Specifically the attendees and our researchers aimed the ovation at Peter and me..... parents who have lost a child to cancer and are using that loss to make a difference in the lives of other children with cancer. 

After a full morning, we then went to the Riverwalk in Providence and had a lovely lunch at Cafe Nuovo, overlooking a canal. 

I snapped this photo as we were coming into Boston. We are visiting Peter's parents for the next two days. The beauty of this is that Providence is only 50 minutes or so away from Boston. So it was an easy drive with NO traffic. 

When we arrived at Peter's parents' home, we were greeted by "Book Book," the wild turkey. He got this cute name from the sound he makes! This is ONE friendly bird. He did not seem to mind us in the least. When I tell you this fellow is HUGE, I am not kidding. 

Then we went for a Walk around the local pond, and saw many wonderful creatures. The sun was out and the weather is definitely spring like!!! Check out this happy cardinal, who stopped by for seed that Barbara (Peter's mom) left out for him. 

This beautiful swan was sitting on her nest, waiting for her eggs to hatch. People were stopped along the path to watch and take photos! 

You heard of ducks in a row. Well this is turtles in a row!!! With the glorious sunshine, these fellows were out on practically every rock and log. 

Thursday, April 14, 2016

Thursday, April 14, 2016

Tonight's picture was taken in April of 2009. This was clearly Mattie's potato chip phase! Mattie had a few eating phases. Because chemotherapy truly impacted Mattie's appetite and also his ability to eat. His chemo left him with mouth and throat sores! So with that, it was hard and painful to swallow. We had the McDonald's chicken tender phase, the vanilla shake phase, the vanilla frosted donut phase, and the Utz potato chip phase. Mind you it couldn't be just any potato chip! It had to be the Utz brand. I will never forget while at the hospital one night, Peter went to EVERY vending machine to find Utz potato chips. He knew he couldn't come back to Mattie's room without them! Literally something that may sound trivial could lead to an amazing roller coaster of emotions for Mattie. 


Quote of the day: Nothing exalts the soul or gives it a sheer sense of buoyancy and victory so much as being used to change the lives of other people. ~ E. Stanley Jones

We flew to Boston today, rented a car and then drove an hour to Providence, Rhode Island. Peter and I are presenting at the American Pediatric Oncology Social Workers conference tomorrow morning. 

This was the photo we took coming into Boston!

When we left Washington, DC it was in the 60s and glorious sun (for a change). Landing in Boston, we were greeted with 48 degrees and nothing blooming. It is hard to believe that a couple of hundred miles could make such a huge difference in climate. 

Can you see the cranberry bogs? It was amazing that we could see these red berries from the sky. 

This is one of my favorite sites coming into Boston... Boston Light! Can you see the white lighthouse in the middle of Boston Harbor?

As we were driving to Rhode Island, I can't tell you how many Dunkin Donuts we passed. It is as common as seeing a bank! We passed the Dunkin Donuts Center along the highway and I was joking with Peter that even this complex is named after the donut company. Peter did not believe me at first. He thought it was just an advertisement. But NO! Apparently it is the "epicenter" of entertainment in Providence!


It is funny, tomorrow morning we are doing a 90 minute presentation to about 200 social workers. The presentation will introduce them to Mattie, the Foundation, the Standards project and the Standards themselves. Clearly there is a great deal of scientific content to this presentation. Yet the part that worries me the most about the presentation is the beginning. The part that I am doing about "who is Mattie" and in essence why we have chosen as a Foundation to focus on psychosocial care. I am not sure why this troubles me. It does at every conference presentation we do. One would think I should be worried about the content and the substance of our presentation, but that isn't what weighs on my mind. What weighs on my mind is how to convey Mattie to a group of strangers within minutes. How to get them to understand that our experiences led us to where we are today, and to the vision to create standards of care. I always tie myself up into knots because I know the only way Mattie will be acknowledged, appreciated and understood by others now is through my own words and my role as an advocate. So to me that is a far more daunting charge than just presenting content. 

Wednesday, April 13, 2016

Wednesday, April 13, 2016

Tonight's picture was taken in April of 2008. Specifically around Mattie's birthday! How do I know? Because I remember this brown paper. Our neighbors gave Mattie a gift wrapped in paper. All over the paper they wrote sayings and messages to him. Mattie loved it and wanted it taped up on the wall. As you can see we had a proud birthday boy with his gift wrapping. 

Quote of the day: There is a wonderful mythical law of nature that the three things we crave most in life -- happiness, freedom, and peace of mind -- are always attained by giving them to someone else. ~  Peyton Conway March

Peter and I are headed to Rhode Island tomorrow to attend the Association of Pediatric Hematology/ Oncology Social Work conference. We have been asked to speak on Friday morning. Interestingly enough two of the social workers from Mattie's hospital will be in the audience. It is actually hard to present in my opinion when I know people in the audience. I am not sure why. 

This is one of two conferences we are attending this Spring. Another occurs the first week of May. For me the timing of this is really unfortunate because during Walk season it is hard to focus on anything other than fundraising, processing donations, and putting out fires. 

In terms of the Walk, our goal is to raise $70,000 this year and we have already met 58% of our goal, at $41,000. But we need to still keep pushing because money for us doesn't grow on trees nor do we get government grants to fund our work. We are able to continue providing psychosocial miracles to children with cancer because of the trust our supporters and corporate sponsors have in us and their incredible generosity!

http://www.aposw.org/docs/APOSW2016ConfBroch.pdf

Tuesday, April 12, 2016

 Tuesday, April 12, 2016 -- Mattie died 343 weeks ago today.

Tonight's picture was taken in April 2008. This was the last birthday Mattie celebrated before cancer struck three months later. This was Mattie's second birthday cake. We had a little ice cream cake for just our family and of course Mattie's big cake for his party! As you can see we did multiple candle celebrations with Mattie. Even with a slice of cake post birthday Mattie loved the whole blowing out the candles experience. 


Quote of the day: Hope is a tease, designed to prevent us accepting reality. ~ Dowager Countess (from Downton Abbey)

Today I met with my friend Mary Ann (pictured in red). Mary Ann and I met in graduate school and we have known each other a long time. This photo was taken of us on July 20, 2002, at Mattie's baptism. It is hard to believe that two people in this photo are no longer with us, Mattie and Mary Ann's mom. Both died of cancer. 

Mary Ann and I were talking about baptisms today at lunch. I find it fascinating how different churches baptize their parishioners. Some pour or sprinkle water on your head and others really dunk you in the water. I was joking with Mary Ann today, that I would never have gotten baptized if I had to get fully dunked into water. 

I remember Mattie's baptism like it were yesterday. I was half dazed from lack of sleep and still recovering from a c-section and bladder surgery. I had no idea how Mattie was going to react to water on his head, but the irony was he LOVED it. The priest joked with us and said in all the years he did this, he never saw a baby smile when water was poured over his head. Father Jim has one finger up in this photo because he was telling our family and friends that this was a first for him!

When I got home today, the deep purple tulips in Mattie's memorial garden were bursting open! The daffodils and crocus are now gone! But they have been replaced with these beauties! Mattie's garden gives so many of us in our complex spring enjoyment for weeks!

Monday, April 11, 2016

Monday, April 11, 2016

Tonight's picture was taken in April of 2003, during Mattie's first birthday party! Mattie had an Elmo themed party that year because he was absolutely in love with that RED Sesame Street creature! Gatherings with noise were problematic for Mattie back then and I remember he and I went upstairs a few times to regroup. Of course by his third birthday party, things had changed. It is funny when you go through it, you think that stage will never end. Looking back, having some perspective, I realize it ended quickly. Of course at the time, I thought it went on forever.  


Quote of the day: It has been said time heals all wounds.  I do not agree.  The wounds remain.  In time, the mind protecting it’s sanity covers them with scar tissue and the pain lessens, but it’s never gone. ~ Rose Kennedy

I just received this flyer today! Take the Stage Performance Company, based in Rockville, MD is hosting a Musical Benefit for Mattie Miracle on Sunday, April 24th at 3pm. 

How did this happen? Well one of the directors of the company is Susan Thompson. Susan is the wife of one of our board members. In July 2015, Peter and I were invited to participate in an International Conference in DC to launch the soon to be published psychosocial standards of care. The conference chair wanted to feature children performing at the conference's opening session. I recommended Susan's troop. The kids did an absolutely fantastic job. After all, the came into a crowd of hundreds of people and performed without the right acoustics and sound system. Their voices were charming as was the spirit and energy they brought to the room. They got standing ovations after their performances! We recorded two of the songs they did at the conference below:


Everything has its season: https://www.youtube.com/watch?v=08x5RLxe_h4

Home, Nothing is easy: https://www.youtube.com/watch?v=-Ul4I9ubPDY&nohtml5=False

We realize that this benefit concert comes on the heels of our upcoming Walk in May, but I felt compelled to do this since this is something the children are motivated to do! I just love the notion of children using their talents for a cause! If you are local to DC, please consider coming on April 24th. You can purchase tickets, which are $15, at: http://www.takethestageperformance.org/


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About Take the Stage:

Take the Stage Performance Company showcases the top young talent from the Washington, D.C. region in two musical theater performing ensembles encompassing grades 3 – 12 and grouped by grade level. Ensemble members learn and perform musical song and dance numbers from Broadway and movie musicals. Performances include a fully produced musical revue with tickets available to the public, several road shows at local festivals and community events in the Washington Metro area, and an informal cabaret showcase evening for the ensemble members and their families.

The emphasis at Take the Stage is on performance and learning through doing. Each performer is challenged to grow and stretch his or her skills in a warm and nurturing rehearsal environment. We create a performance community where performers feel challenged and engaged, and where they have the opportunity to cultivate and apply their considerable talents.

Review of Elevate:

http://dcmetrotheaterarts.com/2016/03/12/elevate-take-stage/

Sunday, April 10, 2016

Sunday, April 10, 2016

Tonight's picture was taken on April 4, 2002. Peter snapped this photo of Mattie at like 1:15am, right after Mattie was born. Peter followed Mattie from operating room into the nursery. I was unable to participate in any of this because besides having a c-section, I had to have a grapefruit size tumor removed from my bladder. Needless to say, I always appreciated seeing this photo and hearing about what Mattie and Peter experienced those first couple of hours. 


Quote of the day: Do not judge the bereaved mother. She comes in many forms. She is breathing, but she is dying. She may look young, but inside she has become ancient. She smiles, but her heart sobs. She walks, she talks, she cooks, she cleans, she works, she is, but she is not, all at once. She is here, but part of her is elsewhere for eternity. ~ Unknown


It is hard to believe that yesterday we were in Florida and today were are in DC. It is rather disorienting in a way. Especially since we hit the ground running today to go shopping for the Foundation's raffle. Raffle shopping may sound like fun, but it actually is VERY tedious. It involves creativity, finding eye catching items to round up and fill baskets, and basically it involves endurance. After several hours of going to Christmas Tree Shop in Waldorf, MD and several other stores, I can say that we made excellent headway today! 

Nonetheless, I am not feeling well. I feel very tired and have a head cold. The irony is that when I was in Florida I did not feel any of this way. It is like I picked up right where I left off! I am not sure if my feelings have something to do with being back home, having to work intensely for the next several months on the Walk (because it isn't just planning and executing the Walk, but there is a lot of post walk work as well), or what! Even though I was away, I did work for several hours everyday on the Foundation. Yet, it was the change of location and hearing and seeing the Ocean that made a huge difference to my spirit.