Saturday, December 13, 2014

Saturday, December 13, 2014

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and was riding a horse for the first time in Griffith Park, Los Angeles. I am not sure whose facial expression here was more priceless, Mattie's or Peter's!!! Both capture the thrill of the moment! 


Quote of the day: The worst part of holding the memories is not the pain. It's the loneliness of it. Memories need to be shared. ~ Lois Lowry

Last night, I was trying to upload the following two photos to the blog to highlight the riverboat that we were on for Peter's office holiday party! However, I was having connectivity issues at home!!! The name of the boat we sailed on was The Cherry Blossom! The irony is when Peter was in business school, Georgetown University held its spring formal for its MBAs aboard this boat! So this was our second time on this recreation of a Victorian riverboat.

This is what the interior of the river boat looks like. 

Peter and I spent the majority of the day doing Foundation work! This evening we went out to dinner for a break. On our drive home, we literally had a Red Fox cross RIGHT IN FRONT of our car. It wasn't as if we were in the woods!!! Our car was on the road, in a densely populated part of town!!! It caught us by surprise!!!

Friday, December 13, 2014

Friday, December 13, 2014

Tonight's picture was taken in December of 2003. It featured one of Mattie's favorite things.... the flash light! He was the chip off the old block! Peter practically collects flashlights and feels you just can't have enough of them. Mattie was beginning to share in this same philosophy and between the two of them together we had enough flash lights to light up the entire floor of our building's complex. 









Quote of the day: Not from my heart, for I have not forgotten. We are all the pieces of what we remember. We hold in ourselves the hopes and fears of those who love us. As long as there is love and memory, there is no true loss. ~ Cassandra Clare

While driving home from a licensure board meeting today I was stopped at a red light. The truck in front of me read "Sardi's Catering! Needless to say this caught my attention immediately because this is my maiden name! I have never seen this catering company anywhere around town before, so this made it even more rare. 

This evening Peter and I went to his office holiday party. This year it was aboard the Cherry Blossom Boat which sails out of the Harbor in Alexandria, VA. The event was a semi-formal and it included dinner, a cruise around the Potomac River, seeing the city lights, and a casino night as well. 

Because of the occasion, I went to visit my hair dresser. I have been seeing Celina for years! In fact, she started working with me before I even had Mattie! So we go back a long ways together. Celina supports the Foundation too and freely gives of her time at our Walks each May by painting nails for children and adults! She never comes along to the Walks, she always bring her family to participate! Celina is very talented and can put hair up in about 30 minutes and in all sorts of styles. I brought her a head band today that I wanted integrated into my hair, and instead of putting it on my head like a typical headband, she weaved it into my hair! 

Here was a scene aboard the Cherry Blossom!!!!! One of the casino games available was roulette. People were busy playing. I was busy watching. 

With taking a cruise at night, you do get to see some of the wonderful night lights! I was intrigued by the sighting of the Ferris Wheel from National Harbor!!!! It reminded me of a carnival!!! I loved the colors and though it is December somehow it is something you expect to see in the warm summer months!

Thursday, December 11, 2014

Thursday, December 11, 2014

Tonight's picture was taken in December of 2003. Mattie was in Los Angeles and at Griffith Park riding the famous Dentzel Carousel. Mattie loved the Carousel which was interesting in and of itself since he really did not care for activities that involved crowds and loud noises. Yet there was something intriguing about a carousel. The horses, the lights, and of course the movement. I think it was the movement that captured Mattie's attention and he wanted to know just how this machine worked!!! At heart he was an engineer and he was always fascinated by the mechanics and operations of things and wanted to understand them.  


Quote of the day: Stories about lives remembered bring us backward while allowing us to move forward. ~ Nina Sankovitch

As promised, here are some photos from the gingerbread man cookie event that the Charity Through Medicine Club hosted at the Georgetown University Hospital yesterday. The Club brought all the supplies and set it up and worked with the in-patient children in the units. 

Several of the children were unable to leave their rooms because either they weren't feeling up to it or they were dealing with immunological concerns. But that was just fine, the project came to them!!!

As you can see ALL age groups participated in cookie decorating! Even real little ones! Our teen volunteer is in a yellow gown and mask because extra precautions were needed to enter this patient's room..... not for the volunteer's safety, but for the child's! All sorts of germs can easily come in with us through our clothes, hands, etc. 

When a volunteer is allowed into a patient's room, I view this as really positive. A patient wants to engage, is feeling up to it, and wants some new stimulation. It is wonderful particularly when kids who are healthy can help kids who are impacted by illness. To me this can be a very enriching experience and though awkward at first, I think with more exposure to one another, this can be a very beneficial for both sides of the equation. 

I don't know the story behind this fellow, I only got to see the photo of him, but I entitled it "the sad cookie!" Of course even through food, how one feels clearly comes out. 

Wednesday, December 10, 2014

Wednesday, December 10, 2014

Tonight's picture was taken in December of 2003. Mattie went from a child who strongly disliked bath time to one who really loved everything about being in the bathtub. He even loved to sit in it and just play. Fully clothed, without any water on. He would start with a few toys, his soap bottles and some how by the time he was finished more and more toys seemed to have found their way into the tub. 


Quote of the day: Remembering tires a person out. this is something they don't teach us. Exercising one's memory is an exhausting activity. It draws our energy and wears down our muscles. ~ Juan Gabriel Vásquez

Today a bunch of women who I met during Mattie's preschool days got together to celebrate our friend Catherine's birthday. Catherine's daughter and Mattie were in the same preschool class two years in a row and we have known each other since 2005. A lot has happened in our lives since that time. While Mattie was battling cancer, so was Catherine. In many ways, our stories are different but yet we have a great deal of commonalities. Our lives get quite busy and we are all moving in different directions, but to me birthdays are important to acknowledge and today we took Catherine to Mattie's favorite restaurant. I saw many of the people who know us quite well. At times when I sit in this room in which this photograph was taken, I think of Mattie. 

Meanwhile, while I was at lunch, the Charity Through Medicine Club from Bishop Ireton High School in Alexandria, VA was at Georgetown University Hospital. This Club is working is conjunction with Mattie Miracle this year. They are bringing social activities and cheer to children in the Hospital. Today's activity that they coordinated was decorating large Gingerbread Men cookies with the children. This photo shows the team of teen girls who came to work in the in-patient pediatric units of the Hospital. Working in the inpatient units isn't easy. The children are clearly sick, usually in their rooms, dealing with issues of isolation, some are bored, some maybe sad, depressed, angry, and frustrated. Others maybe craving attention. Any thing is possible because just like any of us, we have our good days and bad days when sick. Yet long term exposure to hospital living..... without having adequate sleep, privacy, and feeling safe and secure about one's future, can wreck havoc on one's mental state. Therefore, from my perspective it is wonderful that the Charity through Medicine Club's primary focus is to work with in-patient children! Typically most high school groups want to work with outpatient children. These children LOOK healthier, they are more energetic, they are wearing everyday clothes, are more likely to be running around and fully engaged in whatever activity you bring in. I believe that working with in-patient children may require greater effort on the part of the volunteer to make a connection, but I know the rewards are deeply meaningful. When volunteers came onto the floor when Mattie was battling cancer and provided us with outside stimulation and engaged him, we were all thrilled. It was a gift I will never forget, and I have a feeling this is how many families felt after today's visit by this energetic and happy teen group. I have other photos but I am awaiting Hospital approval before uploading them to the blog since they capture patients from the Hospital.  

Tuesday, December 9, 2014

Tuesday, December 9, 2014 -- Mattie died 274 weeks ago today

Tonight's picture was taken in December of 2003. This was classic Farmer Brown at work. Mattie was in Los Angeles and helping me pick oranges and grapefruits from my parent's trees. Actually I am not sure what Mattie liked best, the picking part or the playing with fruit. Once the fruit was off the tree, Mattie loved holding the fruit, trying to stack it, sort it, and so forth! He could do that for hours. He would take it in and out of the basket and he wanted to do this outside in the cold. Despite it being Los Angeles, don't let that fool you..... LA can also get cold and at times you can need a coat and it was one of those times back then! From the photo, you can see how Mattie was eyeing the fruit intently!!!


Quote of the day: Problems that remain persistently insoluble should always be suspected as questions asked in the wrong way. ~ Alan Watts

Today I was invited to participate in a Round Table childhood cancer discussion held at the prestigious Cosmos Club in Washington, DC. The Round Table was hosted by the Alliance for Childhood Cancer and the Coalition Against Childhood Cancer (CAC2). The Alliance for Childhood Cancer represents more than 20 national patient advocacy groups and professional medical and scientific organizations and the CAC2 supports the advocacy efforts of childhood cancer organizations throughout the Country. Mattie Miracle is an organizational member of CAC2. I included links below to both organizations. 

The Alliance: 

http://www.allianceforchildhoodcancer.org/about

CAC2:

http://cac2.org/

The first Round Table discussion took place in September, today was a follow up discussion. These Round Tables are historic in a way because they are bringing together many childhood cancer organizations from around the Country to develop a unified childhood cancer advocacy platform. That may not sound tremendous or novel, but in a way it is!!!! Each childhood cancer organization has its own priorities, issues, and a particular cause and interest that it wants to lobby and advocate for on Capitol Hill. It makes sense if you think about it, because many of the leaders of these organizations have been directly impacted by childhood cancer. Therefore we are passionate about the issue and stand ready to make a difference. We come armed to correct a wrong for OUR child! Yet of course, from a legislator's standpoint these multiple messages are confusing and most likely muddy the waters. All the messages are compelling so whose message do you support?! The goal of the Round Table discussions is to pull us together to brainstorm the issues and develop a unified strategy and advocacy platform. 

Naturally this can be challenging because we all have varied interests and agendas and yet from what I saw today, there was a real concerted effort for people to be heard and having a professional consultant at the helm guiding the process definitely helps with the flow and strategy. Needless to say, I wasn't sure what this three hour meeting was going to look like, but I felt as if I learned a lot and that is always a wonderful way to leave a meeting. 

Monday, December 8, 2014

Monday, December 8, 2014

Tonight's picture was taken in December of 2003. We took Mattie to Travel Town in Griffith Park, Los Angeles. This was one of his favorite places. It was a park filled with historic trains. It is a museum but it is very hands on and kids are allowed onto the trains and they can experience them, hear their whistles, walk on the tracks (as you can see here!!!) and run around. It was a place (http://www.traveltown.org/index.shtml)  we visited each time we went out to visit my parents. The irony was prior to Mattie coming into my life I wasn't that big of a train fan, but after having Mattie, I became interested in trains, cars, and all things that had movement. These were things that he loved and therefore what Mattie loved, grew on me. 



Quote of the day: Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think. ~ A. A. Milne 


During certain points in our grief journey, Peter and I realize we have to assess how things are going and what we could do to help manage ourselves as we try to cope with Mattie's loss, a loss that is forever constant. In a way, the strategies we use come and go, and then seem to repeat over again in a never ending cycle. Such strategies include allowing certain people into our lives to socialize with us, and then shutting them out to protect ourselves. We have come to the conclusion we have to do what we have to do at times in order to be able to be survive and to be able to function. Yet I have noticed one thing with time.... isolating myself from others does not make me happy either and can in a way further set me off. So by protecting myself, I land up making things much worse. 

Peter is always commenting that he feels like he lives another life when he goes into the professional world. Having children is the norm, so when people innocently ask Peter, "Do you have kids?" Peter has to choose if it is worth the effort and the person to actually tell the truth.  Peter always says it is yet another form of alienation and isolation.... alienation in that he no longer fits the "norm" of what is typically expected and experienced in life, and isolation in that once the differences are identified, the differences become amplified and leave one to feel even more by themselves than before.

Today I did something I hadn't done in years. I went with my friend to the mall and we walked around, discussed her daughter's scavenger hunt birthday party at the mall and just shopped. Of course we both know quite well our own losses and can bring them up at times, but something compelled me the other day to just say...... this is something that I wanted to resume doing. This was something I had been involved with before in my friend's life and then I shut it out completely. It is hard because my friend's daughter is Mattie's age, they went to school together and of course when I see her daughter, I can't help but wonder about Mattie. Why did he get cancer? Why isn't he turning 13 this coming year? I of course do not have answers to any of this? Some how in time I need to find a way to manage my feelings about Mattie's death while at the same time understand and be happy for my friends who have developing children. Of course from a very logical and theoretical sense I can be very rational and happy, but I am also human and very emotional. As such, it is hard at times not to see what I don't have and what my life is missing.  It is hard not to feel hurt and jealous. Yet I am aware of all these thoughts and feelings and I figure that is the first step. 

Sunday, December 7, 2014

Sunday, December 7, 2014

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and celebrating Christmas in Los Angeles. We set up a tree that was Mattie's height, which he really loved to play around and at Christmas, he was most intrigued by the gift wrapping itself. Not just by the presents. With Mattie you never knew what was going to capture his mind and attention. He had a way of bringing all sorts of things and people into his play schemes. Mattie kept us all hopping and active, and seeing the holidays (and each day) through his eyes were fascinating.  



Quote of the day: Conviction is worthless unless it is converted into conduct. ~ Thomas Carlyle

Peter and I did non-stop chores today! We never seemed to stop moving, but the one important thing we did was we went to visit Mattie's Tree at his School. We wanted to change the Fall decorations over to Christmas! So down came the harvest bow and up came the red Christmas bow around the tree! In addition we placed around 10 sparkly snowflake ornaments on the tree. 

You can see the silver and red sparkly snowflakes here in this close up photo! There are also other items on the tree like hotwheel cars, Lego pieces, a wind chime, a bird house, and other toys.

This photo captures the silver and gold snowflake ornaments shining in the sunlight!!! To me these are Mattie's ornaments. We put them up each year and take them down after Christmas is over and store them in our closet until the next season. I selected them two years ago because they shine, sparkle, and are bold like Mattie's spirit and character. 

This evening after all our chores were done, as we were driving home I SAW...........Mattie Moon (a name Mattie was given in preschool)! I scrambled in my purse to find my camera. I wasn't sure I could capture this amazing sight in time while Peter was driving. But I was determined! This is the photo I snapped from a MOVING car no less! I personally think Mattie was determined to send me a message and enabled me the ability to see, capture, and share this amazing orange glow of a moon tonight. I wonder how many others who saw the moon stopped and also thought of Mattie tonight?