Saturday, November 9, 2013

Saturday, November 9, 2013

Tonight's picture was taken on November 8th of 2008. Mattie was invited to his art teacher's studio to paint a special creation. Mattie met Miss Pollack at his elementary school, and they took an immediate liking to each other while Mattie was in kindergarten. Debbie understood Mattie and she read him as a mature and wise soul. Which was indeed correct! She also saw the budding artist within Mattie. Though in this photo Mattie had his first limb salvaging surgery, he was able to use his hand to paint. Debbie gave Mattie this wonderful floral smock to wear and with her guidance, Mattie created "Mr. Sun" that day. Mr. Sun is a huge painting and hangs in our dining room today. It was actually a beautiful gift Mattie and Debbie left us with! Mr. Sun inspired the creation of the Foundation's logo, and in essence the Foundation doesn't only possess Mattie's name but it showcases his favorite colors and his own artistic creativity. I recall the day Mr. Sun was painted quite vividly since we all spent the entire day together and Debbie worked very hard to make it special and memorable for us. Pay particular attention to how Mattie signed his painting..... big, bold, and in blue. A color that would stand out on the canvas.   

Quote of the day: The best antidote I know for worry is work. The best cure for weariness is the challenge of helping someone who is even more tired. One of the great ironies of life is this: He or she who serves almost always benefits more than he or she who is served. ~ Gordon B. Hinckley


For some reason, I am simply exhausted tonight. When I woke up this morning, I received an email from my lifetime friend, Karen. She wanted to know if I was planning on building a pyramid today! She was joking with me, but there was some truth to her jest. Because she knows my weekends are even busier with tasks and chores than my weekdays. To some extent this frenetic pace we keep on the weekends maybe planned or needed! Needed because it is a great distraction from what life truly is, which is hard and different without Mattie in it. We spent a good portion of the day in Mattie's room reassembling and rearranging furniture. The painting we did last weekend looks wonderful and slowly the room is taking on a life of its own. We also hung several of Mattie's canvases on the wall today and I am beginning to showcase some of Mattie's meaningful things, which is lovely to see.

But the day did not end with Mattie's room. It continued with a clean out of our bedroom, which is next on my list to address. It too needs to be painted, but that may not happen for a few weeks! It just depends on our energy level. Of course no day would be complete without candy processing and sorting. Honestly there is CANDY EVERYWHERE!!! The smell is overwhelming and at times sickening. Peter has really helped me make significant sorting headway today. But the sorting continues.

There is candy on our table and candy lining the perimeter of our dining room! Someone asked me today about the sorting process. She thought that people gave me sealed bags of candy, like sealed bags filled with Hershey bars for example. But then after reading my blog she deduced that this is not what I am receiving. I receive left over Halloween candy people have and this candy is usually out of its larger packaging and dispersed with other candies. So literally when I open bags people give me I find wrapped chocolate bars mixed with lollipops, hard candies, fruit chews, gum, etc. This is what makes sorting challenging because you literally have to go piece by piece and put each in a Ziploc bag with its like buddies (snickers with snickers, lollipops with lollipops, etc).

We have a whole system and the staging and sorting area is on our dining room table. Certainly it would be a lot easier to just grab all the candies and throw them in Ziploc bags, and fill the bags that way. But the problem with this is if you mix candies for a period of time and store them indefinitely this way, they start to lose their flavor, or worse they absorb the flavors of the other candies around them. So sorting is KEY to preserving the candies!

In addition to this, it is vital to go through each of the candy for the following reasons. We sort out all unwrapped candies, half eaten candies, and candies with inappropriate messages on them such as RIP and the grim reaper (YES I found several of these this year). I am sure these are cute messages to some extent for a healthy child who maybe getting into the Halloween spirit, but these messages are too real for children with cancer and their families.
 

Friday, November 8, 2013

Friday, November 8, 2013

Tonight's picture was taken in October of 2008. Mattie's lower school campus always held a Halloween parade, so the kids could walk around campus displaying their outfits for the teachers, administrators, and parents to see. Kindergarten was the only year Mattie attended school. We both thought he would have many more Halloween parades to come. But that never did happen. Nonetheless, Mattie was a very handsome looking air force pilot that year and back then we really had no concept of childhood cancer or how such a disease could impact an entire family.


Quote of the day: I can only note that the past is beautiful because one never realizes an emotion at the time. It expands later, and thus we don't have complete emotions about the present, only about the past. ~ Virginia Woolf

Today was a day in which I have had to wear many hats. My day started out with a licensure board meeting. For the past year my board has worked diligently on creating new legislation to regulate mental health counselors, particularly those who just graduated from a master's level program. I am happy to say that after all this work, I think we are finally done. I invited counseling faculty members from local universities to our meeting today to share our legislation and to vent any issues or concerns they had about it. It is vital they understand the legislation since it will most definitely impact the students in their programs.

After the meeting, I came home and worked non-stop on one project after the other. The amount of administrative work that is entailed in running a Foundation is overwhelming at times, especially when you have a staff of one. Which is why receiving this photo today made me SMILE. To my surprise, my friend and our Walk raffle chair, Carolyn, is collecting candy for us at her workplace. As you can see she is collecting it but also sorting it. Honestly the sorting is such a gift to see, I practically wanted to give her a virtual hug through my phone. I am inundated at the moment with candy. I now know how it must feel to work in a candy factory. I love candy, but candy in bulk is sickening to smell. In fact I have to close the Ziploc bags at night to trap in the fragrances!!!!

This year I can safely say that my home isn't the only Mattie Miracle Candy factory underway. I now have four friends sorting for the Foundation at their own homes or workplace. Thank you Heidi, Leslie, Carolyn, and Ilona!!!! This is a MAJOR help!!!!

My friend Ann sent me a photo of the candy delivery that was made to her house today by the Bethesda Moms Group! One of the moms associated with this group is a former student of mine. Much thanks Alissa! Clearly as you can see this is another big batch of candy that needs to be sorted. But I am taking it one step at a time. I have to process the 600 pounds that came into me yesterday, before I can move along to today's drop off. But I imagine you are seeing a trend on the blog...... people want to help and candy is a product we can all relate you. Each bag and collection will be an amazing gift that will be appreciated by so many in-patient families caring for sick children at Georgetown University Hospital!

Thursday, November 7, 2013

Thursday, November 7, 2013

Tonight's picture was taken in October of 2008. Mattie went to visit his friends Campbell and Livi one weekend. This was before Mattie had his first limb salvaging surgery. Needless to say even on chemo, Mattie was full of life. As you can see he was pulling a wagon with his friends in it. What changed Mattie forever was his surgeries. They left him physically impaired and the combination of that along with chemotherapy was just too toxic to imagine on the mind, body, and spirit.


Quote of the day: Anything that you learn becomes your wealth, a wealth that cannot be taken away from you; whether you learn it in a building called school or in the school of life. To learn something new is a timeless pleasure and a valuable treasure. And not all things that you learn are taught to you, but many things that you learn you realize you have taught yourself. ~ C. JoyBell C.

Today I was all over town collecting candy. My first stop was at the Lab School of Washington, DC. We were connected to this School by one of Mattie's babysitters, who is now a speech pathologist at the School. Alyx recommended that the School give part of its post-Halloween candy collection to our Foundation. I remember Alyx fondly and though she did not work long with Mattie, Mattie got along with her splendidly. She just understands children and especially children who are creative. I had the opportunity to meet many of the students today who collected the candy and sorted it into bags for us. I even took several photos with the kids, their teachers, and the assistant head of the school. I received permission to post a picture with the children in our newsletter, but I did not receive permission for other formats. Which is why I am only showing you the candy on the blog. I am happy to report that what was loaded into my trunk was 250 pounds of candy!!! Rather impressive, no?

The beauty of the Lab School is its incorporation of the arts into every classroom activity. I don't know about you, but I know I learn a whole lot better with hands on activities. It seems to me by doing a creative project it literally cements the concepts into one's head. Not just cramming it in for a test, but it becomes part of you. This photo is one example of such an amazing hands on creativity activity. The display was created by several classrooms to represent the Day of the Dead. The Day of the Dead is a Mexican holiday celebrated throughout Mexico and around the world in other cultures. The holiday focuses on gatherings of family and friends to pray for and remember friends and family members who have died. It is particularly celebrated in Mexico, where the day is a bank holiday. The celebration takes place on October 31, November 1 and November 2, in connection with the Christian triduum of Hallowmas: All Hallows' Eve, All Saints' Day and All Souls' Day. Traditions connected with the holiday include building private altars called ofrendas honoring the deceased using sugar skulls, marigolds, and the favorite foods and beverages of the departed and visiting graves with these as gifts. They also leave possessions of the deceased.

What is noteworthy about this display, besides its rich color and creativity, is that it incorporates science, art, and history. All the skeletons in the room can actually move. They are powered by circuits and batteries that the children learned to wire up, and on the walls are glorious paper monarch butterflies to represent the legend of the monarch migration that occurs during the Day of the Dead. In addition, there are photos displayed of loved ones who died in the room. Which I thought was a very lovely and meaningful tribute to the whole purpose of the Day of the Dead. I am not saying this will change a child's mind set about the concept of death, but to me this definitely makes the subject matte more approachable. That caught my attention.

Later this afternoon, I drove to my friend Tina's house. Tina collects candy for the Foundation at local schools and other centers. Tina's collection (though I did not weigh it yet, like I did with the Lab School) I am sure is close to 300 pounds if not more. So there is a lot of sorting going on at our home to say the least.

 

Wednesday, November 6, 2013

Wednesday, November 6, 2013

Tonight's picture was taken on Halloween of 2008. Mattie celebrated Halloween both at the Hospital as well as with his closest preschool buddy. This photo captures both Mattie and Brandon together. As my faithful readers know, Brandon was battling cancer at the same time as Mattie. Though there was quite an age difference between them, they were good for each other and Mattie considered Brandon his "best friend." They were a cute pair together and we will always be grateful to Brandon for being such a loyal and caring friend to Mattie.




Quote of the day: Sometimes I think that the one thing I love most about being an adult is the right to buy candy whenever and wherever I want. ~ Ryan Gosling


Tonight's quote makes me laugh! There is something quite special and magnificent about candy. Of course I am sure there are a host of adults out there who may not agree with me! Certainly I recognize that candy is filled with sugar and calories but I also know that nothing can get you through the most challenging and difficult of times like candy. Did I love sugar prior to Mattie developing cancer? The answer would be YES! But when Mattie was battling cancer, sugar and chocolate became staples. When people from Team Mattie would visit us in the Hospital, they always brought me something sweet. It was a gift of kindness, thoughtfulness, and caring. Candy and sugar became symbols of compassion in my mind. Without these gifts, I most likely wouldn't have had access to candy and sweets. Mainly because I never LEFT the pediatric floor and I was usually with Mattie. Back then the hospital had NO snack cart, so getting such a treat wasn't even an option.

After Mattie died, I joined a parent advisory board at the Hospital. At a board meeting the notion of a snack cart was proposed. Mattie Miracle decided to help take on this project. The project was meaningful to me for two reasons. First it enabled families caring for sick children to have access to snacks. I can assure you when given the option under stress, most parents aren't turning to granola bars. They are turning to chocolate. The other reason funding the cart interested me was it was a chance to keep the tradition going of sharing "compassion and kindness," that was shown to me, with other families.

Needless to say the snack cart is a hit at Georgetown University Hospital. Recently one mom told me that she couldn't have survived without this cart. It really made her day when it revolved around the floor. Needless to say as tons of candy comes before me this week and next week, I remind myself as to why the Foundation is doing this. Certainly we couldn't do it without the generosity of so many people in our community, our supporters, and local moms groups and businesses! We thank you!

Today I started the candy sorting process! Keep in mind that my friends Heidi and Leslie have a similar set up going on in their homes. Which is a scary notion because I have no idea what this year's grand total will be! My friend Heidi sent me a text message today saying that she feels like we are in an episode of I Love Lucy, the one in which Lucy and Ethel are in a candy factory and they can't process all the candy coming down the conveyor belt fast enough. So in true Lucy and Ethel style they land up eating the candy (which we aren't doing)!!! Nonetheless the visualization of this got me laughing!

Tuesday, November 5, 2013

Tuesday, November 5, 2013 -- Mattie died 216 weeks ago today.

Tonight's picture was taken in October of 2008. Mattie was in the child life playroom of the Hospital and participating in a Halloween activity. Several Georgetown students came by dressed up to play with the kids and to help them decorate pumpkins. As you can see one was dressed up as Ariel, the mermaid from the Disney movie. It is interesting to note that when Mattie was battling cancer, he related better to college aged students and adults. This wasn't necessarily true when he was healthy. But while battling cancer, it was like something snapped within him and he felt  more mature individuals understood his plight better than kids his own age.


Quote of the day: Happiness in intelligent people is the rarest thing I know. ~ Ernest Hemingway

After zumba class I went to my friend Heidi's home. Heidi is one of our supporters who is collecting post-Halloween candy for our Foundation candy drive. Heidi advertised the drive on her community listserv and people are coming out of the woodwork to help. As you can see Heidi basically has a candy factory going on in her house. I am greatly appreciative of all those who collect candy for us and of course I feel indebted to people like Heidi who comb through the candy for me and sort it into ziplocs. This may seem like a fun chore, but it is just that, a chore! When you have bags and bags of candy, this creates hours of work and sorting. However, since the candy represents the Foundation, I feel it is important that we spot check the candy and also store it in ziplocs for the Hospital. Remember this is candy for a YEAR!!! So the candy needs to be sealed appropriately for Hospital storage. This year I consider myself lucky to have my friends Heidi and Leslie helping me sort. They are doing stellar jobs and I appreciate their attention to detail and care for the candy. They are getting their children involved in the sorting and in the process these children are learning the importance of community service and making time to bring support and care to others. Which is a beautiful life lesson.

Meanwhile back on my front, I collected candy today and as you can see my piles are growing. Thankfully I bought ziplocs today and will begin my own sorting this week. Thursday I am going to the Lab School in Washington, DC. They are donating candy to our drive and part of their service learning involved counting the candy and sorting it into bags for me. So this will be another wonderful gift to receive and apparently several children want to meet me before handing over the candy!

Today I also went to visit my friend Mary who lives in an assisted living facility. I haven't seen Mary since I went away to Los Angeles. Typically when I visit Mary now, she is mute. But today after lunch she actually spoke to me. I haven't had a conversation with Mary in ages! It was almost as if I saw a glimmer of Mary from the past shine through. I see though the key with Mary is TIME! She hears EVERYTHING you are saying and is processing it, but it takes her a while (and I mean A WHILE) to verbalize what is going on in her head. Mary wanted me to know that she realizes I care about her and how much she appreciated that. She also said, "happiness is just a word." She did not elaborate on that statement, but I suspect if I had to fill in the blanks what she is saying is happiness is overrated and a very over used word. To some extent, I think with the loss of both of our sons to cancer, happiness is not a word either one of us like to use in our daily language anymore. When we hear it, it catches our attention, and it almost sends off bells within our heads.
 

Monday, November 4, 2013

Monday, November 4, 2013

Tonight's picture was taken in October of 2008. As you can see Mattie was recovering from his first limb salvaging surgery. His right arm was all wrapped up and therefore had to get used to using his left hand. What I love about this photo was Mattie and his Utz potato chip! Mattie went through several food cravings while battling cancer. He went through his vanilla shake phase, his dunkin donut phase, his pasta phase, and his potato chip phase. But it couldn't be just any potato chip. It had to be the Utz brand. I know Peter remembers this well, since he unfortunately had to roam around the hospital many nights looking for the right vending machine to dispense Utz potato chips. Mattie really wouldn't eat any other kind. I suppose they tasted differently. Naturally given what Mattie was dealing with, if he wanted something specifically that we had control over, we made every effort to make it happen. I view the potato chip runs as funny, however, Peter doesn't, for him even reflecting on these runs was depressing. Most likely because the pressure was on him and he knew he couldn't come back to the room without chips. Also while Peter was roaming around the hospital at night, it truly was isolating and a ghost town. Hospitals have a different rhythm at night and on the weekends.


Quote of day: Changing is not just changing the things outside of us. First of all we need the right view that transcends all notions including of being and non-being, creator and creature, mind and spirit. That kind of insight is crucial for transformation and healing. ~ Thich Nhat Hanh

Tonight's blog posting will be SHORT! I spent about ten hours today painting in Mattie's room. The room hadn't been painted for over a decade and the paint that was there had turned a depressing gray. So in memory of Mattie, we selected a sunny peach color. Peter helped me with clean up tonight, but neither one of us had the energy to rearrange furniture tonight. So the transformation is well underway. Part of our healing can not only be internal, it has to be external. It is our hope that this external transformation enables us to highlight Mattie's art work and special possessions more appropriately, and of course use the room. Since Mattie's death, we haven't lived in his room. His room has only been used for storage, which also wasn't providing either one of us with very positive or meaningful feelings.  

Sunday, November 3, 2013

Sunday, November 3, 2013

Tonight's picture was taken in October of 2008. This photo always gets me to smile. First of all it was snapped around 6 in the morning when we had very little to smile about. We were in the pre-op area of the hospital. Mattie was headed to his first limb salvaging surgery (which was a ridiculous 12 hours, until we were able to see Mattie). Needless to say we were all on the edge that day. Despite all the fear and stress we were feeling, Peter tried to take Mattie's mind off of the surgery. So as you can see they both put their hair caps over their heads. To me they looked like astronauts in the hospital! Mattie also got a kick out of the fact that Peter got suited up to go into the operating room with him. In all reality, Mattie was remarkable, brave, and trusting that we were all doing the right thing to fight his cancer.  


Quote of the day: The planting of a tree, especially one of the long-living hardwood trees, is a gift which you can make to posterity at almost no cost and with almost no trouble, and if the tree takes root it will far outlive the visible effect of any of your other actions, good or evil. ~ George Orwell

Peter and I started our day by visiting Mattie's new memorial tree at his school. As many of my faithful readers know, Mattie's oak tree, which was planted in May of 2010, died in September. After much thought, we selected a Yellowwood tree to replace the Oak tree. I know very little about Yellowwood trees, but we ultimately selected it because it flowers in the spring, it is unique to the school's property, and it turns a beautiful yellow gold color in the Fall. Gold is the official color of childhood cancer and September is Childhood Cancer Awareness month. So the Yellowwood seems like the perfect new tree to symbolize Mattie's life. Peter and I have seen the lovely plaque by Mattie's tree before but this big rock was a new addition. I have no idea where it came from, but I know Mattie would have loved it. Mattie loved rocks and collecting them!

The Yellowwood is about 15 feet tall. We imagine it is about three years old and literally it was the same height of the tree that was just removed. When the oak was planted in 2010, it was much smaller. Like my height actually. So it was quite a lovely surprise to see a more mature tree planted. Peter and I spent some time decorating the tree. I removed all the items from Mattie's previous tree and placed most of them now on this Yellowwood. I was very happy to see a gator bag around the tree and we located the school's hose and really drenched the tree and filled up the gator bag, which will slowly seep water into the base of the tree.

Here is a close up of some of the beautiful butterflies hanging on the tree. Linda, Mattie's child life specialist, featured these butterfly ornaments at the Foundation's Walk this year. Kids got the opportunity to decorate these butterflies and on Mattie's 4th anniversary, Linda visited the school and hung these decorated butterflies on Mattie's tree. A very thoughtful and meaningful gift to the tree and for us!

The tree has hotwheel cars on it, toy airplanes, Lego pieces, a beautiful hand crafted birdhouse (in the shape of an acorn, with a bird's nest inside of it) and a wonderful wind chime. The tree is back to being the glimmering and twinkling tree that it once was.

After our tree visit, Peter and I spent the rest of the day at home in Mattie's room. We worked for about six hours painting. We did not finish, but I am hoping within the next day or so, I can finish the room! Painting itself is hard work, but given the nature of what we were painting, it makes it ten times more difficult.