Saturday, March 7, 2015

Saturday, March 7, 2015

Tonight's picture was taken in May of 2009. Mattie was attending the "Mattie March." The event was hosted by his care community to show their support for him and to encourage him through his treatment. Posing next to Mattie was Tricia, Mattie's favorite HEM/ONC nurse. We met Tricia the first week of Mattie's treatment and she became a vital part of our lives. She not only cared for Mattie, but she looked out for me and Peter. Not many of the hospital staff really looked out for Peter. Maybe it was because Peter is a man and there are social expectations our social has around this or maybe because Peter had to balance work outside of the hospital and caring for Mattie. Yet despite Peter's work schedule Tricia understood that Peter was always on top of Mattie's care and his medical situation. Tricia found ways to help Peter, whether it was bringing him clean towels in the morning to shower before he had to run to work, or bringing him coffee on occasion, which was vital for Peter to function after a night of very little sleep. This may not sound like a big deal, but in a hospital setting this kind of attention was ENORMOUS! Because NO ONE is really looking out for the patient's parents!!!! Given what I experienced with Tricia, it really isn't surprising that one day across the hallway, Mattie had something important to tell Tricia. In fact, he yelled for Tricia to come on over. Tricia came flying over thinking that something was very wrong. Mind you I had no idea why he was screaming. When Tricia came over, Mattie told her that the reason he called her over was that he wanted to tell her (IN THE MIDDLE OF THE PICU!!!) that he LOVED HER! Mattie wasn't an overly affectionate person and certainly did not tell MANY people he loved them. If he told you this, it was because you EARNED it. 

Quote of the day: A harmonized mind produces harmony in this world of seeming discord. ~ Paramahansa Yogananda 

I love these bushes. I refer to them as, "Margaret's bushes." These rose bushes are near to where my good friend Mary Ann lives. When my friend Margaret died in June of 2014, Mary Ann sent me several photos of these glorious rose bushes in bloom in honor of Margaret, who grew the most stunning roses. Now Mary Ann and I follow Margaret's rose bushes throughout the seasons. Mary Ann sent me a photo of them today. Clearly they are barren and surrounded by snow, but as spring draws upon us, these bushes will be transformed. Which I look forward to seeing.  

If you were to turn your head to the right, while looking at Margaret's rose bushes, you would see this sight. A rather glorious sighting in a way. It is a stunning lake. Or at least it is stunning in the warmer weather months. But even in the winter there is something quite tranquil about this spot. To me Margaret's rose bushes are situated in a most ideal setting, and on this dock is a bench for people to sit and to look at over the water. To me it is so well planned. If I had this in my backyard, I am not sure I would ever leave my window.

What I love about this photo is not only the amazing ray of sunshine that is beaming down from above, but check out the lone Canadian Goose in the distance walking across the ice. You just have to love his spirit of determination. Though I did not see any of these sightings for myself today, it is very special to receive photos from a friend and to share in her journey. 

Later today I received an email letting me know that a local Girl Scout troop is collecting cookies and money for Mattie Miracle. Several members of this troop were Mattie's classmates. It is hard to imagine, if Mattie were alive today he would be in 7th grade and yet in my mind he will always be a kindergartner. I am stuck in time and have never moved passed that time point. One may think as time marches on that more healing takes place and therefore it would be easier to reunite with former moms and reconnect with Mattie's classmates. I find that the exact opposite is true. With time, it gets much harder. The divide between us gets larger, our differences become much more pronounced, and it is forever apparent what these moms continue to have and what I have lost. There is no how to book on finding one's way in the world after a child dies and unfortunately it does differ for each parent. Yet the sentiments I am expressing are real and given other bereaved parents I have spoken to, I know they are not unique to me. 

Friday, March 6, 2015

Friday, March 6, 2015

Tonight's picture was taken in August of 2009. At this point we knew that Mattie's cancer had metastasized and his situation was terminal. Mattie was in the clinic and being entertained by his buddies Jocelyn and Brandon. In fact they were having boat races in the sink together with boats they designed! Mattie and Jocelyn were a team, against Brandon and Jocelyn's sister. It is beyond tragic to think that both people in this photo are now gone, struck down by osteosarcoma. The one year anniversary of Jocelyn's death is fact approaching, April 2! I will never forget this day because it is two days before Mattie's birthday. Mattie and Jocelyn were always in step with each other. 


Quote of the day: You might think that after thousands of years of coming up too soon and getting frozen, the crocus family would have had a little sense knocked into it. ~ Robert Benchley

When I saw Benchley's quote tonight I broke out in laughter! I find it thoroughly funny because when I go outside to feed the birds, I can see that some of our bulbs that we planted have tried to shoot through the dirt and have started to sprout green leaves. Why on earth they would be doing this considering it is freezing out and we have on and off snow is beyond me. Needless to say whatever greenery shot up is not completely frozen!

I think these two pictures tonight say it all. One photo is taken on the East coast and the other on the West coast. Almost like night and day! You would think that they were taken during different seasons, but they were not. Both of these photos were taken TODAY! This photo was sent to me by my good friend Mary Ann. She went out for a walk and she sent this to me so I could see what the snow accumulation looked like in her neck of the woods. When I visit Mary Ann, we typically go for a walk in her neighborhood, so I know exactly where this is taken. Which makes it nice to have this perspective, since I am used to seeing it during the warmer weather months! What the snow is covering in this photo is a body of water, a lake. 

Now while we are all struggling with snow on the East coast, this is what it looks like in Los Angeles. It was 80 degrees today and clearly sunny! These are the flowers growing in my mom's front yard. A very different sight from what I see outside my window. 
















When I saw Mary Ann the other day she was telling me that people in Boston who are selling snow on the Internet! Seems to me Los Angeles should try to sell their sunshine! If that were only possible. But honestly who would want to buy snow???? Well apparently there are buyers out there and they are paying $89 for a box of snow. Got to love them. Check out this article and video if you really want a good laugh!

Got snow? Boston man will ship 'historic' snow anywhere in the US:

http://www.today.com/news/boston-man-will-ship-historic-snow-anywhere-us-2D80518853

Thursday, March 5, 2015

Thursday, March 5, 2015

Tonight's picture was taken in April of 2005. Mattie was three years old. Nothing is wrong with your eyes. The photo is blurry! That is because Mattie was moving around in my arms and therefore both of us were moving about and the camera did not know what to focus on. Sometimes taking photos with Mattie was a challenge. He did not want to pose, nor did he want to stop for a minute to capture the moment. Which was why we posed together! Every April we had the tradition of going to the National Arboretum to see the Azaleas bloom. It always happened around the same time as Mattie's birthday and my joke with Mattie was that the flowers came out as a birthday gift to him. He always liked that notion!


Quote of the day: Advice is like snow - the softer it falls, the longer it dwells upon, and the deeper in sinks into the mind. ~ Samuel Taylor Coleridge

Today Washington, DC was hit with another snow storm, Thor, to be exact. Got to love the fact that storms now have names! I remember Pandora, which happened a week or so ago, but I have no idea what happened to Q, R, or S. Nonetheless we are now up to a storm that starts with the letter "T!" In any case, last we checked we were up to 5 inches of snow and counting. Which for DC is a lot of snow! The whole city was shut down today. Peter went to work however, but that is because he can walk to work! I spent the day working as well and thankfully had LOTS of birds for entertainment. Early in the morning, we were visited by our resident Falcon. I did not capture him in a photo, but you can see many happy sparrows. I am happy to report that our new feeder location this year seems to make it harder for these birds of prey to capture sparrows off the feeders. 

This afternoon while I was working, I heard an unusual sound outside the window. So I looked up and there all in red was a magnificent Cardinal! In fact his significant other was accompanying him too. She of course isn't as vibrant in color. Some how these cardinals must have visited us in the past because they came flying into our deck and went to our hooks where we USED to hang our bird feeders. It did not take them long to find the new feeding location!

He and I had a staring contest today. He was a real beauty and I enjoyed watching him! I remember Mattie's nurse, Tricia, telling me the significance of the cardinal. She said that the cardinal provides a symbolic type of reconnection to a meaningful loved one who died. Whenever I see a cardinal now, I can't help but think of Mattie. Of course in DC, seeing a cardinal is RARE!!! I would like to think on a day filled with snow.... a day Mattie would have loved to be outside, building and creating, that I had my own sort of visitation. 

Wednesday, March 4, 2015

Wednesday, March 4, 2015

Tonight's picture was taken in March of 2003. Mattie was almost one year old. He wasn't walking yet but he was very on and fully engaged! This to me was a classic Mattie pose! His hands flared out like two radio antennae trying to pick up a signal. Mattie did this early on as a baby and this pattern somewhat stuck throughout his life. He absorbed the world around him and took everything in through observation and touch!


Quote of the day: Without ambition one starts nothing. Without work one finishes nothing. The prize will not be sent to you. You have to win it. ~  Ralph Waldo Emerson

In the midst of cold and grey weather days in Washington, DC, I decided to make these three flower arrangements for Tuesday night's Foundation dinner that we held for our volunteers. We displayed them on the table last night and I think they really made a difference. One couldn't help but notice them especially since there is NOTHING green or colorful growing outside now. So I know they caught people's attention. I know I am enjoying these flowers now at home, with their orange theme.

Next week, Peter and I have two conferences on our plate. In the beginning of the week, one conference is in DC (Comprehensive Cancer Care for Children and their Families). Many of the psychosocial researchers who work closely with our Foundation are presenting at this conference and our lead researcher is staying in our home with us for two nights and we are attending the conference together. I have been asked to say a few words at this conference on March 9th at the 1pm time slot:

http://www.iom.edu/Activities/Disease/NCPF/2015-MAR-09.aspx

Then later in the week we are flying to Florida to present our research poster regarding our National psychosocial standards of care project at the National Comprehensive Cancer Network conference. Today I was running around finalizing our poster and I went to the printers to get this enormous thing printed out and laminated. 

http://www.nccn.org/professionals/meetings/annual_conference.aspx

Peter and I have worked on revising the format and layout of the research poster. This is what the poster now looks like! Though you can't tell here it is 52" wide x 42" tall.

Tuesday, March 3, 2015

Tuesday, March 3, 2015 -- Mattie died 286 weeks ago today.

Tonight's picture was taken in March of 2004. Mattie was around two years old and we took him to the Children's Museum in DC. As you can see he was exploring a fire truck! Mattie was in love with anything that had a wheels and gravitated to the color RED!



Quote of the day: Unity is vision; it must have been part of the process of learning to see. ~ Henry Adams

This evening, Mattie Miracle held a dinner in honor of its core group of volunteers to thank them for their years of service to the Foundation. Some of these volunteers have been with us since 2009 (when Mattie was alive) and his care community planned the first Mattie March in Mattie's honor. Mattie Miracle is well aware of the fact that our annual Walk requires a coordinated effort to effectively run the event. Each of these volunteers play an important role in this effort! The success of the Walk is crucial since it generates a significant portion of our operating budget for the year and of course these funds go to directly helping children and their families with cancer. In a way, Peter and I feel as if the more people we can help, this illustrates the effectiveness of the Foundation which further enables us to keep Mattie's memory alive within the community.  

This evening, I shared the following information with our Walk volunteers. I wanted to show them what we accomplished together as a team! Where we started from in 2010, to where we have landed up in 2014. Each year we fortunately continue to bring in more financial support thankfully from our faithful contributors. 

2010:  "No Climb Too High" raised $16,000

2011:  "Faces of Hope” raised $25,000

2012:  "Love of Family“ raised $40,000

2013:  “Walk and Family Festival” goal was $40,000 raised $46,000

2014:  "Walk and Family Festival” goal was 50,000 and raised $55,000

Our teen vendor, Ellie will be featuring these wonderful flower pots and forget-me-not seeds at this year's walk. Ellie has been a faithful vendor at our Walk for years and the creativity comes from her. She donates 100% of her profits to us. Ellie incorporated our Foundation colors into her designs and the quote she chose to go on the seed packet is so touching! To me the seed packet alone is a gift. 



The poem reads:

Those we love don't go away

They walk beside us every day

Unseen, unheard, but always near

Still loved, still missed, still very dear.

Monday, March 2, 2015

Monday, March 2, 2015

Tonight's picture was taken in March of 2005. Seeing this photo ALWAYS makes me laugh. Mattie and Peter were playing with plastic or pretend foods. They were holding up toy french fries and potato chips. Of course what they were doing with them was key! They were both imitating BIG BUGS and trying to intimidate me! 

Quote of the day: The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well. ~ Ralph Waldo Emerson

The highlight of my day today was I got to spend it with my good friend Mary Ann. We had lunch together, chatted, and had an opportunity to catch up. Mary Ann and I went to graduate school together and we have been through many of life's ups and downs together. We understand grief and also appreciate the fact that there are no timelines for it nor do we have expectations or pressures about how we want the other to act or feel about our losses. In other words all feelings are fine, valued, and what makes us unique. Over lunch, I shared with Mary Ann the story below..................................

In June of 2013, I was introduced to a family who lost their only child to cancer. Chris was 12 years old and died of Leukemia. When he died, his mom, Ilona asked to be connected to another mom who also lost an only child. There aren't a ton of us out there, or at least who have been treated at Georgetown Hospital. In any case, one of Mattie's doctors contacted me and asked me if I would be willing to talk with Ilona. That one request led to a friendship. Ilona and I have been connected since that very first encounter in 2013, and we text message each other every day. How a loss connected two people who did not know each other..... that could be a story in and of itself. 

Recently Ilona shared with me the fact that she placed an order for four iPads through Amazon. Ilona orders iPads as part of her Foundation work. The Foundation grants iPads to children who have cancer. Ilona does this in memory of her son, Chris. Chris turned to his iPad when he was undergoing treatment. It helped him stay connected to friends and family and it also helped with distraction, which is necessary when contending with scans and other challenging procedures.

However Ilona's most recent iPad order that she was expecting to be delivered to her house on February 19, NEVER showed up. When she contacted FedEx, they claimed that she did receive the iPads and FedEx showed her the electronic signature that was obtained by the driver at the address. The signature did not belong to Ilona nor her husband. So the question became..... who did the iPads actually get delivered to and to what address did Fedex use?

For the past week and a half Ilona has tried to work this issue out with Fedex and with Amazon. However because FedEx had a signed delivered receipt, the seller was not willing to take Ilona's word for what had transpired. Last night Ilona sent out a message on Facebook to all her supporters for help. It was at that point it dawned on me that she needed the help of the media. So I sent an email to Beth Parker at Fox 5 news. Beth has covered several Mattie Miracle stories and I really enjoy working with her. I particularly like that when I send Beth an email she always responds back and takes my requests seriously. That to me makes such a difference and after you see Beth's coverage of Ilona's story I think you will see why I call Beth "a childhood cancer champion."

In one day, Beth contacted FedEx and Amazon and got this debacle resolved. As for tonight the iPads are now in Ilona's possession. But I am quite sure if Beth hadn't intervened, hadn't investigated the issue, and put pressure on these companies, Ilona would still be without the iPads she ordered and most likely would have had to take this financial loss of repurchasing four more iPads. 

iPads meant for kids battling cancer go missing when delivery goes wrong by Beth Parker

http://www.myfoxdc.com/clip/11190861/ipads-meant-for-kids-battling-cancer-go-missing-when-delivery-goes-wrong

Sunday, March 1, 2015

Sunday, March 1, 2015

Tonight's picture was taken in February of 2006. I have been searching for these Valentine's photos for a while now. The reason I couldn't find them is that I stored them in my March of 2006 folder instead of February. In any case, this was what our first floor would look like around Valentine's Day. We would make hand decorated Valentine's together for Mattie's friends, classmates, and teachers. Mattie loved gluing and creating and he could spend a lot of time doing these kinds of projects. 





Quote of the day: Are the days of winter sunshine just as sad for you, too? When it is misty, in the evenings, and I am out walking by myself, it seems to me that the rain is falling through my heart and causing it to crumble into ruins. ~ Gustave Flaubert

It was another stellar weather day in Washington, DC. Grey, frigid, rainy, and toward the end of the day we had freezing rain. Everything became covered in ICE. Peter took some photos of our bushes. They look like big popsicles. 

Our rose bushes and cages that we put our tomatoes in are completely iced over! 

Typically this weather would bother me. Of course I am not in love with it but I would have to say I am so busy working on Foundation things, which leaves me glued to a desk that it really doesn't matter to me what kind of weather it is outside. For the most part I am so absorbed that I am not even paying attention anymore. Which isn't a good thing. I need more perspective and hope as March moves along and two conferences that we are attending will be over soon that I can begin to focus on ONE THING AT A TIME. Rather than many large projects simultaneously.