Saturday, November 15, 2014

Saturday, November 15, 2014

Tonight's picture was taken in November of 2008. Mattie was recovering from his second limb salvaging surgery. He literally had so many IVs and drainage tubes connected to him that he was unable to move. As you can see he was surrounded by three crucial members of his psychosocial support team, Linda (Mattie's child life specialist), Jenny and Jessie (Mattie's art therapists). These women were an incredible trio and they devised a way for Mattie to use his arms even in bed. They created a fishing pond out of a plastic bin as well as a magnetic fishing pole. They knew how much Mattie used to love to fish with Peter on the Potomac River. Mattie was holding the pole in his hands and Jenny was holding the fishing pond bin filled with magnetic fish. This creative play encouraged Mattie to move his body and engage with them emotionally and socially! 



Quote of the day: The telling and hearing of stories is a bonding ritual that breaks through illusions of separateness and activates a deep sense of our collective interdependence. ~ Annette Simmons


As Peter is in Boston, I reached out to our friend Cathy. We met Cathy in 2008, at Georgetown University Hospital. Her daughter Bridget was diagnosed with cancer around the same time as Mattie. Peter and I related to Cathy and her family as soon as we met them and they truly are a remarkable family because Bridget has been battling cancer throughout this six year time frame. 

Though Cathy and I have had different cancer experiences over the course of these past six years, we can relate to each other on many levels. We can understand the changes that cancer has caused on our personal relationships. How it affects those in our lives, how friendships change, how we feel differently about ourselves, about the world around us, and how our attitude, viewpoint, and overall priorities change. 

We talked for five hours today, but the time went very fast. I suspect it went fast because there is a deep sense of a collective experience and as we tell our stories we further bonded. I know this doesn't always happen for me because I do not typically find satisfaction or comfort in talking to other moms who have or had experienced childhood cancer. Which is why I am not your ideal support group candidate. This is true for three reasons, typically in such a setting I am either absorbing what others are saying and naturally take on the role of the supporter rather than being there to obtain support, or quite the opposite happens. Hearing other people's stories can truly set me off and then I am unable to process the content because I am so overwhelmed with my own feelings. Therefore making it impossible to listen, hear, or take on anyone else's thoughts or issues. As a result, I tune out and land up getting angry about being present in such a setting. Lastly, I have found that parents can also be prescriptive and want to dole out advice such as..... "this worked for me, so you SHOULD do this!!!" As if there is one right or wrong way to manage or cope with grief and loss. Some parents can be very judgmental of other parents. All three reasons are why bereavement support groups do not work for me and why I usually do not turn to other parents for emotional support. 

Of course when dialoguing with Cathy, neither one of us is prescriptive and we are both listening to each other. Which is why it works out so well. This afternoon Cathy shared with me two wonderful gifts. Cathy loves to cook and jar all sorts of vegetables and jams. So I got one of her homemade pickled beans and also she added to my butterfly pin collection! This swallowtail is a true beauty and it will remind me of our lunch together and our time connecting. Of course my time with Cathy will always remind me of my days in the clinic when Mattie was alive and a part of my life. Which maybe why it always upsets me when people we knew at Georgetown University Hospital leave! Mattie's treatment team help us to keep Mattie's memory alive. When they leave they take a piece of his memory away from the institution. When I saw Cathy today, it reminded me of our days in the clinic. Even though we were fighting cancer together, for me it meant Mattie was alive, and alive is better than gone any day.  

Friday, November 14, 2014

Friday, November 14, 2014

Tonight's picture was taken on November 12 of 2008. This photo was taken at a horrible hour of the morning! Like 5 something, as Mattie was being prepped for surgery. How any of us were smiling is beyond me! This was the day Mattie had his second limb salvaging surgery. Of course his second surgery was a misnomer because he did not only have just one part operated on! During this second surgery Mattie had his right leg, left arm, and left wrist all operated on at one time. We were apart from Mattie for 12 hours. This seemed like an eternity until we could see him and when we did in the post anesthesia care unit (PACU), Mattie was an absolute mess! I actually found the PACU daunting. It was one big room filled with patients all recovering from surgery. Most of them were adults and then there was Mattie. When they finally allowed us in the unit to see Mattie, as I was walking down the hallway, I could hear him screaming in pain. Typically the PACU doesn't allow both parents back there but I think they were happy to have us both there to help manage Mattie. 


Quote of the day: We don't heal in isolation, but in community. ~ S. Kelley Harrell


I had a long licensure board meeting today in which we had an ethical violations trial. Needless to say I sat through a seven hour long meeting! Without FOOD! No matter how many years I have served in this role, human dynamics never cease to amaze me. Or the power and control that people possess to cause harm to one another. Right before me I could see a train wreck unfolding between a former client and a therapist during the trial. At one point for the emotional protection of one party, I removed her and put her closer to me. After a full day of that, I must say I came away from the meeting with a royal headache and rather disgusted by what I experienced! I unfortunately can't go into more details. 

Meanwhile while I was enduring the meeting, I received several wonderful photos from my friend Tina. There was more candy sorting going on today! In addition, one of the local businesses in Falls Church, VA who were collecting candy for our annual drive sent us some great photos today!!! Several members from Body Dynamics, INC posed with the candy they collected! They not only snapped a photo or two, they did it in a very creative manner. I just love it!!!  http://www.bodydynamicsinc.com/

At Tina's house today was another sorting party! This group of ladies sorting candy are all from Mattie's preschool, Resurrection Children's Center. From left to right are Catherine, Dawnee, Ann, Maria, and Mary. I haven't been able to attend one of Tina's big sorting parties, but she has told me that these parties are like an old fashioned quilting bee. In which women gather and land up bonding, talking, chatting, sharing stories, strategies on being a parent, and ultimately uniting on a common goal. The goal in this case is not a quilt but to sort candy for the Foundation. It is the equivalent of the 21st century quilting bee. I thought Tina's observation was so meaningful that I wrote to Fox 5 TV about it because there is very few things that bring people face to face these days that actually get them talking and really bonding! Also excited about being together and really wanting to come back to SORT some MORE!!! Unheard of to me, because to me sorting is taxing work!!!

Thursday, November 13, 2014

Thursday, November 13, 2014

Tonight's picture was taken on November 13th of 2008, Peter's birthday. The last birthday he celebrated with Mattie. Mattie and I always brainstormed ways to acknowledge Peter's day and even though we were in the hospital, we got some help from Linda and Jenny (Mattie's child life specialist and art therapist). They helped us get cupcakes and design special and memorable gifts for Peter. Mattie created this model magic birthday cake for Peter. In fact this cake meant so much to Peter, that we still have this cake on display on a bureau. It looks just as lovely as the day Mattie surprised Peter with it! The wonderful thing about art therapy was it wasn't only beneficial for Mattie, but all the products Mattie created became pieces of his legacy to us. Aspects that capture his time with us, to those looking at this object it may just look like a cute cake made out of model magic. But to me this object tells a story. Like all of Mattie's art therapy pieces. They tell a story about Mattie's battle with cancer, they portray the special, unique, and creative force that he was, and they remind me that yes indeed he did exist for seven years and one time I was his mom. 


Quote of the day: Wherever you turn, you can find someone who needs you. Even if it is a little thing, do something for which there is no pay but the privilege of doing it. Remember, you don't live in a world all of your own. ~ Albert Schweitzer


Our morning started very early because Peter had a 7am flight from Washington, DC to Boston. Despite it being his birthday, he had work to accomplish in New England. Peter also did a great deal of traveling when Mattie was alive. So I am used to this aspect of his career, but now that Mattie has died, I have become even more reflective and introspective about myself and everything and everyone around me than I ever was before. Which is saying a lot, because that was something I excelled at always. Being a deeply feeling person has its pluses and minuses in this world, and after losing Mattie, I would say that the grief of losing a child can sometimes be equated to being suffocated. There are times this feeling can creep up on you all of a sudden, and I assure you it doesn't only happen in the first year of grief and loss. It is pervasive and continuous.  

In any case, as today is Peter's birthday, I couldn't help but reflect on past birthdays we celebrated together. Times when we were altogether as a family. In fact, the reality of losing a child to cancer doesn't always unite families together, sometimes it can fragment them. Sever bonds and it can leave the surviving parents floundering as a couple and as individuals. Without Mattie in our lives, friends and family do not know how to deal with us and in a way we no longer know how to deal with them. It is the ultimate double edged sword of never fitting in. 

Wednesday, November 12, 2014

Wednesday, November 12, 2014

Tonight's picture was taken in October of 2008. This photo was actually captured by my dear friend Margaret who came to visit us in the hospital. Margaret was Mattie's first preschool teacher at Resurrection Children's Center. I can tell that this photo was taken on a Friday! Mainly because we were in the hallway watching an experiment being performed by the Georgetown University Chemistry Club. The Club visited on Fridays and their visits were something we always looked forward to, especially seeing Chris, the Club's president. Chris understood Mattie, and knew how to engage his attention. That day, Chris distributed roses to the kids. The experiment was to dip the rose into dry ice and then drop the rose on the floor! The rose after being dipped into dry ice would cause the rose to break apart into very tiny pieces. Though Mattie was intrigued by the experiment, he did not want to give up his rose and see it destroyed on the floor. So he held onto his rose and Margaret being a cultivator of roses, I imagine decided to snap this moment in time! She later sent me this photo which I of course now cherish!


Quote of the day: We have all known the long loneliness and we have learned that the only solution is love and that love comes with community. ~ Dorothy Day

Just when you would think there is NO MORE candy to be picked up, delivered, or sorted, you would be VERY WRONG!!! It just seems to be coming in from every direction. I have actually had to turn some schools and groups away this year because we have too much as it is. Though I have tried to do most of the candy transfers from one location to the next myself, today Tina and Ann came into DC and delivered an overwhelming load of candy to me. As you can see it filled the whole back end of an SUV. 

Unlike Ann and Tina, where Peter and I live in DC, parking is a royal problem! If it weren't for the assistance of our complex staff, shuttling candy from Tina's car to our home would have been impossible today! Mainly because there is no place for Tina to park the car easily that gives us access to the door! But Detra who manages our front desk has been helping us with our candy drive and helped me get this bin on wheels from our maintenance department and allowed Tina to park in the loading dock! As we were transporting candy in the HUGE bin this morning, I posed for a photo with all the wonderful women who support us in our complex. Maria works in our sales office and is our friend and fantastic supporter. She organized a candy collection for our drive with the complex staff and practically every staff member contributed. We are very fortunate to have such a loving community here that appreciates us. Pictured with me are... Detra, Maria, Irene and Mazie!

I was under some sort of delusion that I could move this candy myself. Fortunately Ann and Tina kept at me insisting they would help me. I am glad I ultimately listened because I have moved so much already that I really did not have the energy to
take this on alone. Getting the candy from the car, into the bins, through my hallways, onto the elevators, and into my home is truly a feat. It may not sound complicated but it all adds up and it is the ultimate work out! Getting this large bin onto the elevator is a riot and could be a comedy show episode in and of itself. Mainly because the wheels of the bin get caught in the groves of the elevator threshold and the bin won't move. It just seems to get stuck, not moving in or out of the elevator. At one point Ann and Tina were inside the elevator trying to lift the bin into the elevator and I was on the outside of the elevator sitting on the rim of the bin trying to tip the bin up so the bin would clear the grooves on the floor of the elevator. It was one for the books, you had to see it to believe it!  

I posted this on Facebook today! As I said the candy was rolling in as were the volunteers who were processing it! If I had to title this photo, I would call it "Three in a bin!" 

This is just one side of my dining room! Believe it or not the other wall is also filled with candy! We are pretty sure we have over 3000 pounds of candy. 

Later in the afternoon, I ventured to Bishop Ireton High School. I was invited to present to the Charity in Medicine Club. The president of the Club is Isabel Anderson (who is second from the right in this photo). Isabel is a Junior and has been volunteering with Mattie Miracle since 2012. Isabel and her Club is hosting many special activities for children at Georgetown University Hospital over the course of this year. She asked me to come talk to her Club about Mattie, Mattie Miracle, and facts about childhood cancer and the importance of psychosocial support. There are a total of 80 students in this Club, but only a handful came today. 

I debated showing these teenage girls Mattie's 4 minute remembrance video, but in the end, I did display it. Mattie is the reason why there is a Foundation and he grounds the work that I do. Therefore, it is vital that people know about him. After I showed the video I asked the students for their feedback. I have never shown this video to this age group before, so I was actually curious to hear their insights. One of the observations that was shared was that Mattie seemed like a happy child from the beginning to the end. I thought that was an astute observation. Mattie had a relatively miserable existence with cancer, yet Peter and I worked hard to make him feel safe, secure, and to know that we had a plan to fight his disease. If Mattie was perceived as happy I do attribute this to our parenting. I can freely admit this and of course add to that the fact that Mattie was also a special spirit. 

The students were absolutely blown away by the childhood cancer statistics I shared with them. They couldn't get over the lack of adequate NIH funding for childhood cancer, how old and antiquated the drugs are that children are treated with, and the fact that a classroom of children are diagnosed with cancer a day and around four children a day die from the disease. It is shocking and even more shocking that this seems like the best kept secret in the United States.

After my presentation many of the students came up to chat with me. They signed up for our e-newsletters and wanted access to our cancer facts so they can share them on blogs and in other communications and assignments. So though the group may have been small today, I feel as if the message did get out. 

Tuesday, November 11, 2014

Tuesday, November 11, 2014 -- Mattie died 270 weeks ago today.

Tonight's picture was taken in October of 2008. Mattie just had his first limb salvaging surgery and despite having his arm wrapped up, being on pain medication, and in a wheel chair, he still found a way to find the humor in things. Along with the help of his art therapists he created his very own Stinky Cheese Man! Stinky Cheese Man was a story book character who Mattie came to appreciate and literally looked just like this blue shaped fellow, only the yellow color of a Swiss cheese! We all got a lot of laughs out of Stinky Cheese Man and he was on display for quite some time in Mattie's hospital room. 


Quote of the day: In separateness lies the world's great misery, in compassion lies the world's true strength. ~ Albert Schweitzer

Today was all about MORE candy collecting and sorting! I had the opportunity to meet Christy Stults! Christy is the community services coordinator for the Moms Club of Bethesda-NW. This Club has contributed to our candy drive three years in a row! Each year they donate close to 90 pounds of candy to our drive!!! Pictured from left to right is Ann, Christy, and myself! We were at Ann's house today sorting candy all day. Ann's house is one of the drop off candy sites in Alexandria. Actually she was our original drop off site from when the first candy drive started back in 2011. Ann and Tina have allowed their homes to be transformed during this drive into candy sorting centers which has been immensely helpful considering the volume of candy we are processing!

I also had the opportunity to meet Michelle and her daughter Kate. Kate's school acknowledged Veteran's Day today, and she and her mom chose to spend a portion of their morning helping us sort candy. Which was very generous of them! 

Pictured from left to right are Tina, Ann, Michelle and Kate.

Tina has held a few sorting parties at her house so far and I love her observation about these gatherings! To me sorting can be laborious, but to our volunteers Tina has noticed it is fun, it has been a wonderful way for women to bond together, and in a way it is therapeutic. It maybe today's own version of the quilting bee. Where women come together to dialogue, share stories, help one another, and in the process there is a cause involved! A product produced! I thought Tina's observation was really quite moving and powerful!

Monday, November 10, 2014

Monday, November 10, 2014

Tonight's picture was taken in October of 2008. Mattie was pictured with his big buddy, Brandon. Brandon and Mattie battled cancer at the same time and despite their age difference they were close friends. In fact toward the end of his life, Mattie considered Brandon one of his best friends! As you can see, Mattie and Brandon's IV poles were decorated! Brandon started this tradition and Mattie followed suit. When Brandon completed his treatment at the hospital, he actually took his Wall-E decorative IV pole cut out that he created and gave it to Mattie. Mattie was very honored and used it often. In fact, at times it was hard to engage Mattie either emotionally or in conversation, but somehow Mattie liked talking about the origami cranes or the other decorations hanging on his IV pole.

Quote of the day: To the generous mind the heaviest debt is that of gratitude, when it is not in our power to repay it. ~ Benjamin Franklin

Today I drove around the District of Columbia picking up candy for the annual drive. I want to thank Diana Meltzer (Associate Head of School; ) at the Lab School of Washington for coordinating our drive at her school for a second year in a row.  I had the opportunity to meet many of the students and even took a photo! A photo which will be going into our upcoming newsletter! Because minors are in this photo, I only have permission to display it in our newsletter! Our candy drive was advertised through local DC listservs! I thank our friend Ildi for spearheading this effort and collecting the candy!!! Last but not least, we thank Daisy Troop 879 in DC for their wonderful candy contribution and hand drawn messages of hope to children in the hospital! The cards were adorable and so colorful! 

When I got home today, I had to cart all this candy upstairs into our home! That was another labor of love! Then of course it all needed to be sorted. This was the pile collected from the Lab School alone! Rather impressive!!!

Meanwhile at my friend Tina's house, she had a sorting party going on with the candy she pick up and collected from all over town today. 

As you can see there were volunteers of all ages! I hear they all had a good time, loved working together, and felt a real sense of purpose and community!

This is what Tina's trunk looked like today! I think we are going to need a uhaul soon, forget about a car!

Sunday, November 9, 2014

Sunday, November 9, 2014

Tonight's picture was taken in October of 2008. Mattie was in the child life playroom at the Hospital with Linda, his child life specialist. Linda understood that Mattie needed to be busy and thrived on having responsibility. That day the Hospital received a large donation of toys. Linda had closed the playroom in order to sort the toys and store them appropriately. However she allowed Mattie into the room with her to assist. She knew on some level that he would like feeling unique and special as her helper and she was indeed correct!


Quote of the day: Whatever is at the center of our life will be the source of our security, guidance, wisdom, and power. ~ Stephen Covey

Peter and I brought several of our plants inside today. With the weather changing rapidly and the predicted forecast of 20 degree temperatures for the upcoming weekend, several of our green friends needed immediate attention. This afternoon, we went to an antique shop to begin Christmas shopping. We do this annually and always visit this particular store. In fact, Peter knows one of the women who works at the store, which is ironic. When Peter worked for Arthur Anderson, one of his clients was the World Bank. This woman is a World Bank employee, yet on the weekends she works in this shop. Each time we visit the shop, they have a chance to reconnect!

While rummaging around the store, I decided to take a few photos. Mainly because what is intriguing about antiques stores to me is they capture a by-gone era. It is a walk through time. As I was going down one aisle this cabinet filled with women's gloves and linens caught my attention. Women dressed so differently at one time. I can only imagine what it must have been like to have to wear hats and gloves! I think some how there must have been something quite refined and elegant about seeing a woman's outfit finished off with such detail!

This clothing rack was an eye opener because it was comprised of all children's clothes! When we think of such items today, they look SO different. Now everything goes right in the washing machine and most definitely needs no ironing. Very different from back then! The materials were different and of course the styles were night and day.  

The hats got me. All kinds of women's hats! There were purses too. Somehow when you look at these items you want to imagine where these items were worn, who wore them, and the stories behind them. 

At one point, Peter came to find me while I was in the store. He wanted to show me this poster of the Grand Princess. Which in 1998 was the largest cruise ship afloat. In fact, Peter and I voyaged on this ship with my parents in July of 1998, to celebrate Peter's graduation from Georgetown University with his MBA. The beauty of this poster is it compared the ship to a 747 plane. Which is a large plane, but in comparison to the ship, is SMALL!

One of the items I came home with today was this plate. This plate caught my attention. I happen to love china and collect it! I have all sorts of sets. These particular china plates came as a set and each plate had a different scene on it that was illustrated by Kate Greenaway. In all reality I wanted to buy each plate, but I only purchased this special one, because it was a limited edition. Kate Greenaway was an English children's writer and illustrator who died at the early age of 55 from breast cancer. 

On the back of the plate it says......Children's lives are a series of first experiences.

Somehow the illustration and the sentiments of the back just spoke to me!

While Peter was speaking to his friend at the store, I looked down in the cabinet and saw this butterfly pin. To me that was a sign! Naturally this pin came home with me and was added to my pin collection!