Friday, September 20, 2013

Friday, September 20, 2013

Tonight's picture was taken in September of 2003. Mattie loved to sneak behind all the plant stands to look out our big windows. What Mattie was holding onto was a wrought iron plant stand, a stand that is still in our living room today. However, the stand now hosts many of the art projects and Lego structures Mattie created. I did not necessarily set out to do this, to create a memory display, but it just naturally formed. Now I add to it periodically. This is also a plant stand that Patches used to jump upon in order to sit up high enough to look out the window. She too gravitated to this plant stand, which maybe why, Patches ashes are also located on it. This plant stand has been transformed into our memory stand!

Quote of the day: Competition has been shown to be useful up to a certain point and no further, but cooperation, which is the thing we must strive for today, begins where competition leaves off. ~ Franklin D. Roosevelt

I can't believe it but even within a free art class, which I attended last night, there was COMPETITION. Which is why FDR's quote resonates with me. The competition began as soon as the instructor went around and asked the five of us to introduce ourselves. Specifically he asked us to talk about our experience and skills with painting. That alone made me laugh! Mind you I would never have signed up for this class out of the blue, a friend of mine signed me up. 

It was downright funny. The only male in the class described his skills as non-existent. Saying that he used oil paints years ago, but hasn't painted in a long time. Newsflash................. that wasn't exactly accurate given his skill set that I saw. Then another class member, who I would describe as edgy and agitating, quickly needed to tell us that she takes art classes and also has several pieces on display in the studio. Needless to say, the class dynamics were notable. Then there was me, the only person in the group who had never taken a drawing or painting class. No pressure there. Frankly I did not go in with any stress, but after being around a couple of these folks, my anxiety level went up.

The male student even asked me why I came to this class! He wanted me to know that watercolor is a hard medium and not a good one to start with. Lovely, like I could have done anything about that while being in the class.

Any case, the instructor presented us with this photo of a scene in Maine. Apparently he just got back from Maine and was enamored by its beauty and landscapes. He showed us several of the watercolors he created based on this one photograph. His watercolors were lovely and the goal was for us to copy this photograph on a piece of watercolor block paper. He taught us the basic step by step process of how to begin, which meant sketching the scene on the paper. I maybe able to mix colors and put color together but I can't draw. I think without being able to draw and visualize space, it is hard to paint portrays and landscapes. But I plugged along!

Obviously the students who knew how to paint already were getting bored with his pace, and therefore began to redirect the pace, which I did not care for. But I could appreciate why the teacher veered off his plan in order to accommodate the students. I think being rushed while trying to create is actually counterproductive. It not only prevents creativity, but in a way it forces one to conform to how others are doing the art.  

Toward the end of the two and half hour session, we all had to display our final product. Frankly for my first watercolor, I thought it was fine. But apparently I was in the minority. I think people questioned my bold colors. I like color and to me the more bold the colors the more vivid the feelings and the scene. Any case, you can judge it for yourself!

I would like to step back and try to imagine what this class could have looked like if there was cooperation, as FDR mentioned in his quote. Cooperation between students. There is something very unhealthy about the Washington, DC social scene when one feels the need to compete with others in a free art class. I would like to think this kind of behavior just exists here, but I know this is most likely human nature. At the end of the class the teacher wanted to invite students to attend his actual watercolor classes. Now part of me is intrigued because I would like to learn to paint, but on the other hand, if the class dynamics are what I experienced last night, that would defeat the purpose of going.

Thursday, September 19, 2013

Thursday, September 19, 2013

Tonight's picture was taken in September of 2003. When the weather was nice, we spent a lot of time outside in our complex's plaza space (which was pictured here). This is a great space because it is flat and totally enclosed from the street. It was in this plaza space Mattie would bicycle ride, fly his kite, and ride on various things like this fire truck when he was one and a half years old. Mattie and I used this plaza space for all kinds of things like building snowmen, drawing with sidewalk chalk, blowing bubbles, and playing with our neighborhood Jack Russell Terrier, JJ.


Quote of the day: Politics is not an end, but a means. It is not a product, but a process. It is the art of government. Like other values it has its counterfeits. So much emphasis has been placed upon the false that the significance of the true has been obscured and politics has come to convey the meaning of crafty and cunning selfishness, instead of candid and sincere service. ~ Calvin Coolidge

 

I remember when I was in high school, I had a US government history teacher who graded papers, quizzes, and tests in GREEN. She felt that green symbolized growth, and therefore red was not a productive color to grade in! Funny the quirky stuff one can remember. Any case, this teacher had the gift of bringing US presidents to life for her students. She would bestow upon us stories about their personal lives and it was through these stories that we got to know the person behind the elected position, as well as developed a greater appreciation for the policies and thinking that came out of each presidential term.

I picked a quote from Calvin Coolidge tonight because I always remember my teacher referring to him as "Cool Cal." A president, which she said believed in using very FEW WORDS to communicate. Yet I think this particular quote was very telling and meaningful given the context in which he worked..... politics.

It is an unfortunate commentary that decades later, Coolidge's quote still applies to our political world, a world in which crafty and cunning selfishness abound, instead of candid and sincere service. Peter and I attended the fourth annual childhood cancer caucus on Capitol Hill today. In the Caucus' four year history, I have attended three out of their four childhood cancer caucus summits. I remember in 2010, when I attended the first summit, I did not know what to expect. Especially since Mattie's death was only a year old at that point. At the time, the summit seemed almost larger than life where different cancer groups gathered, networked, and heard an update from the Caucus co-chairs as well as heard about the latest innovations in the field.

Now four years into Mattie's death and being a lot more savvy, I have a much better understanding for the nature of the Caucus and the overall camaraderie, or lack there of between childhood cancer groups. In fact the content of the Caucus is fine because we are hearing from researchers and medical doctors in the field, typically working on pioneer treatments, but I have trouble at times separating the content from the politics. The politics of how it is presented, who is being rewarded in the process, and the overall false hope that is shed on a very complex process. Childhood cancer should not be politicized, and yet it is, and people benefit from being in the limelight, and by people I do not mean children with cancer. I will leave it at that, but I was happy that Peter went with me today so that we could process our experience together.

This evening, I have been invited to a watercolor art class by a friend of mine from zumba class. My friend is an artist and she knows I admire art. Now liking art and doing art are really two different things. So who knows what I will be coming home with tonight, if I create anything at all.  

Wednesday, September 18, 2013

Wednesday, September 18, 2013

Tonight's picture was taken in June of 2004. This was a rare sight in our home.... Mattie NOT moving! Mattie was ALWAYS on the go. One of my nicknames for him was the energizer bunny! When Mattie was growing up the only time he slowed down was when he had a high fever. But I have to say even with chemotherapy and multiple surgeries, Mattie had inordinate energy. He rarely slept in the hospital, and as such neither did Peter and I. Peter and I slept in shifts when we were in the hospital, which was often. We spent more time living in the hospital during Mattie's battle than living at home. Literally Peter would come to the hospital right after work and play and engage Mattie until midnight. At midnight, I would take back over and be somewhat functioning until 3 or 4am. At which point, Peter would then take over before leaving for work. It was a moment in time I will never forget. How either of us functioned for 15 months without much sleep was not only a physical endurance test but an emotional one as well.

Quote of the day: Dreams are necessary to life. ~ Anais Nin

For the past several weeks I haven't slept well. I have bouts of sleeplessness since Mattie's death. Some times I have insomnia, but that isn't my current issue. Instead, what I am experiencing is one dream after another. I call them dreams, but some of them are actual nightmares. They seem very real and while I am sleeping, I can feel myself tossing and turning. I wake up just as tired as when I went to sleep. I remember after Mattie died, my body was running on such adrenaline, that sleeping really wasn't necessary. It wasn't necessary because when you get conditioned to living in a pediatric intensive care unit, you are used to NO sleep, constant sounds, and dealing with one health crisis after another. After Mattie died, there was NO way, I could go home and live a normal life. Which may be why only about two weeks after Mattie died, I moved into my friend's house and helped her care for her dying father. Illness, constant care, and death were normal to me. I remember for the longest time, I would be wide awake from midnight to 3am, because my body got so conditioned to those unnatural hours!

As tonight's quote points out, dreams are necessary for life. That is an intriguing quote because two of my dreams last night involved Mattie. Literally I had three dreams in a row. They seemed to occur one right after the other, or that is at least how I perceived them. When I woke up this morning, the dreams seemed quite life like to me. The two dreams that involved Mattie were interesting, especially since I rarely dream about Mattie. But in one of my dreams, Mattie was a baby. I was holding him in my arms and telling him he was a "goose." Which is also odd, since I never called Mattie a goose when he was alive! Mattie as a baby was very vivid to me as was his crying and his looking at me. Then the second dream moved forward in time to when Mattie had cancer. In the dream, Mattie's doctor came to talk to me to let me know that his cancer had spread to his left leg (keep in mind that in reality, the left leg was the ONLY leg of Mattie's that did not develop osteosarcoma!). When the doctor told me this news, I was devastated, and I can distinctly remember trying to process this news, trying to call Peter at work, and also balancing my reaction in front of Mattie. This was a scene (though the information about the leg wasn't accurate), that played out just like this many times in Mattie's cancer care. Each scan result revealed cancer progression and in many cases, I had to hear the news, deliver the information to Peter, and then quickly compose myself to care for and play with Mattie. Remaining strong and focused, and not hysterical, was my demeanor with Mattie. Perhaps this is my personality in a crisis, I am not sure, but I do believe how I managed that day to day trauma did get extended into how I process and manage my grief. Rarely will you find me in a puddle, crying, and out of control. But again, my composure now, just like when I was in the hospital is not indicative of the feelings and thoughts that are played out internally. Which I have no doubt explains why sleeping and dreaming are challenging for me.

While I was out of our home today, I bumped into a mom from Mattie's school. Her son and Mattie were in kindergarten together as well as on the same little soccer team. This mom mentioned that she was going to back to school night tonight and wasn't sure what to expect at the middle school. I heard her, but honestly I was down right confused! Why? Because in my mind, her son was still in kindergarten. My world ended in kindergarten and sometimes in my mind all of Mattie's classmates are also stuck in my time warp. Which clearly they are not. If Mattie were alive today, he would be in SIXTH grade. It is hard to imagine Mattie at age 11. I have no idea what his favorite subject would have been, who his closest friends would be, and what kinds of activities he would have gravitated to. I have NO idea, which is quite upsetting! Just another example of how different I am..... my fellow parent cohort is going to open school night, while I am writing about my dead child. In my mind, Mattie will always be 7, playing with Legos, cardboard boxes, loving vanilla ice cream, and be sharp as a tack and keeping me on my toes.

Tuesday, September 17, 2013

Tuesday, September 17, 2013 -- Mattie died 209 weeks ago today.

Tonight's picture was taken in September of 2006. If I had to give this photo a title, it would be...... Meeting of the Minds!!! Mattie was trying to engage and play with Patches, our cat, on the staircase. Patches though intrigued by the toy Mattie put before her, was assessing whether she should play or not. Mattie was persistent though and Patches was a great family cat. So Patches usually played along when requested! Patches knew Mattie when he was a baby and grew up with him. There were times I swear I think Patches was studying Mattie and if she could talk would have shared some interesting commentary with us. After Mattie died, I believe Patches grieved in her own way. She spent a lot of time in Mattie's room, near his things (which she never did before), and also this is when her nighttime ritual of howling began to intensify.


Quote of the day: Your visions will become clear only when you can look into your own heart. Who looks outside, dreams; who looks inside, awakes. ~ C.G. Jung

As my many daily blog readers know, last week I talked a lot about the GOLD ribbon campaign, in recognition of September being Childhood Cancer Awareness month. I even discussed how parent advocates in the childhood cancer community are upset with the current Administration's refusal to turn the White House gold. I think it is very important to NOTE that the GOLD campaign was not generated by a company or private industry. Unlike the pink ribbon campaign which is associated with breast cancer. The GOLD versus the PINK ribbon are really being marketed in two very different ways. Which may be why the PINK ribbon caught on and is a huge success. It became a BUZZ because BIG money was behind the PINK ribbon.

My "friend in cancer" (if you know me well, you then know I have practically a nick name for everyone in my life!) sent me a link to an article last week that not only caught my attention but it peaked my interest. It got me thinking about the differences between PINK and GOLD. Not as COLORS of course, but as cancer campaigns. The article Rethink Review of Pink Ribbon, INC, made some fascinating points, points that I wasn't aware of, but are nonetheless insightful. If you look at the article below (try to read through the political commentary) I think you may find it interesting to know how the message of the pink ribbon is received by some breast cancer patients and survivors, as well as family members left behind after a loved one lost the battle. The breast cancer movement did not start out as sunshine, roses, and happy pinkness. Quite on the contrary, the movement started out in the 90's looking very much like the childhood cancer awareness movement today. It was built on substance, fueled by anger at the growing epidemic, not optimism for a cure, and targeting government for not devoting more money to research and prevention.

But somewhere along the way, Komen for the Cure came along, and in a way transformed the state of breast cancer. Certainly the positive outcomes are increased awareness, self education, regular screenings, and early diagnosis. However, while producing these positives a whole other mind set change also occurred. Breast cancer became associated with PINK, a pretty color, a feminine color, and a color that was flashed all over everything including Race for the Cure country wide events. Race for the Cure became synonymous with becoming a Pink Warrior and naturally a warrior is perceived as FIGHTING and SURVIVING anything. It sends a positive message, or so this is how the campaign has lead so many of us to believe. However, digging through the PINKWASH, you get a more accurate picture of the campaign. NOT from my eyes, but from the eyes of someone with breast cancer. It is a campaign that some breast cancer patients and survivors find offensive. Offensive because guess what? Cancer IS NOT pretty. Besides the physical aspects, depression, anxiety, and other mental health issues arise, all of which appear to get washed away in a sea of pink.

One has to ask why did the breast cancer awareness campaign, which started out with substance and a strong advocacy platform convert itself into what it is today? Does making things happy, bold, beautiful, and pink seem more palatable to the public? Maybe, but who really got drawn into the PINK campaign was corporations..... everything from cosmetics to yogurt companies! Corporations are about sales/profits and all of us like to purchase something we like, especially when we think it is going to a GOOD and worthy cause. Of course for the breast cancer community, seeing that companies are profiting from their disease is not only insensitive but it also becomes an ethical situation since there are claims that what these companies are marketing to women are products that are either made or manufactured with cancer causing chemicals.

Again this is where PINK and GOLD are very different. There is NO known cause for childhood cancer. Children do not develop cancer based on the products or exposure to things within our environment. Unlike adult cancers which typically (along with genetic incidence rates) are very linked to environmental factors. This is why breast cancer advocates are livid, they feel that manufacturing companies are in essence disguising their intentions. They are promoting breast cancer awareness month (with the PINK ribbon) and claim to raise money for the cause, but while raising money they are also using questionable materials in their products. I suppose it is one's hope that with enough promotion, marketing, and pink ribbons, the facts about products will fall by the wayside and divert the public's attention. I am picking on companies, but we could also turn our attention to questionable CHARITIES. Charities who are benefiting from the marketing and hype, but at the end of the day is this ultimately helping the cancer community?!!!

I am not up to speed on breast cancer awareness, like I am with childhood cancer awareness. But I found Kim's article interesting, and then I watched the trailer to the 2012 movie called Pink Ribbon, INC. I included a link to it below in case you want to see it. I have been thinking that awareness ribbons are a good thing, until I dug in deeper into the controversy over the pink ribbon. I am not sure how this relates to the GOLD ribbon campaign, other than that awareness ribbons are not the be and end all of any cause. In fact, sometimes they can dilute, downplay, or make light out of a very serious situation. With that said, I am quite certain the intention of the GOLD ribbon is different. It was not created by ONE charity, to promote itself, but by childhood cancer families and advocates to serve as a symbol of the battle they are under, survived, or lost. I think understanding the history of how and why something is created is very important and sheds light on not only the cause but the movement and direction of the support.


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RETHINK REVIEW OF PINK RIBBON, INC (by Jonathan Kim)
 
In early 2012, the world's largest and most visible breast cancer charity, Susan G. Komen for the Cure, got a lot of bad publicity over its politically-motivated decision to end grants to Planned Parenthood to give breast exams to low-income women, which Komen later reversed after an avalanche of criticism. For many, this was the first time they'd ever questioned the motives of Komen, whose ubiquitous pink ribbon symbol has become synonymous with the fight against breast cancer. The important new documentary, Pink Ribbons, Inc., takes a much-needed look at Komen, their corporate partnerships, and whether the relentless pink-swathed positivity that has become breast cancer culture is taking the fight against this deadly epidemic in the wrong direction.

Without a doubt, Komen should be applauded for increasing awareness about breast cancer, which they've achieved through partnerships with corporations, organizations and governments, press outreach and their Race for the Cure events in cities across the nation. The film follows a race in DC, as well as one in San Francisco sponsored by Avon, which runs its own charity and isn't affiliated with Komen. The atmosphere at both events is incredibly festive, positive and almost celebratory, with upbeat music, inspirational speakers, funny outfits, lots of cheering and smiles and, of course, tons of corporate sponsors.

But the film smartly juxtaposes this with images of breast cancer protests of the early 90s, which were fueled by anger at the growing epidemic, not optimism for a cure, targeting governments for not devoting more money to research and prevention and, more importantly, going after corporations whose products and pollution may be responsible for the rise in incidents.

This raises one of the film's most powerful claims, which is explained in the film by author and breast cancer survivor Barbara Ehrenreich: that the pink ribbon movement and the culture around it has "drained and deflected" the anger and militancy of the original breast cancer protests and replaced it with something cute, positive and toothless that lets those who may be responsible for this epidemic off the hook, right down to the use of the color pink, which female focus groups said was the friendliest, most feminine, least threatening color.

The film's other major focus is the questionable motives of the companies that partner with Komen, which seems to have much more to do with good PR than actually helping women, especially since a lot of the donations the companies give are pretty paltry in comparison to the profits they stand to make from women who're more likely to buy a pink-branded product. And, in some cases, partnering with Komen provides cover for the fact that some of these companies with pink ribbons of approval use cancer-causing chemicals in their products or while manufacturing them.

Pink Ribbons, Inc. takes a look at some possible causes of breast cancer and how little is still known about this disease that afflicts one in eight women. And by spending time with a support group for women with stage four breast cancer, where stage five is death, the film examines the effect that the breast cancer movement's positive yet often militaristic language has on some women, with its implication that those who feel sad, angry or depressed about their condition, or even worse die from it, somehow have themselves to blame for not being a "warrior" and not fighting hard enough.

While one can argue that there are a lot of worse organizations to go after than a breast cancer charity, the most important thing that Pink Ribbons, Inc. accomplishes is to urge us to look hard at what charities like Komen for the Cure are really saying about breast cancer, those who have it and the companies trying to "pinkwash" themselves for profit or to insulate themselves from criticism. Because when looked at all together, the message seems to be that instead of demanding safeguards and accountability from corporations and governments that allow known cancer-causing chemicals into the products we use, the food we eat and the environment we live in, women should smile, put on a pink ribbon, donate to Komen and place the responsibility for both avoiding or surviving breast cancer on themselves.

TRAILER to PINK RIBBONS, INC
http://firstrunfeatures.com/trailers_pinkribbonsinc.html

Monday, September 16, 2013

Monday, September 16, 2013

Tonight's picture was taken in September of 2006. That day we took Mattie to Scott's Run. A park in Virginia where Mattie loved the nature trails and particularly loved the streams that we had to traverse to remain on the paths. This was one of Mattie's favorite ways to commute.... on Peter's back! Mattie would walk for a period of time, but like clock work, as we were getting closer to the end of a trail Mattie always wanted a piggy back ride.

Quote of the day: Friendship is born at the moment when one person says to another, 'What! You too? I thought I was the only one.' ~ CS Lewis

In March of 2011, I met my friend Annie. We met each other while advocating on Capitol Hill for childhood cancer. After we attended a conference and training, we were then put into a smaller group which visited the Hill and met with staffers from the State of Virginia. Despite being part of this group of 20, Annie and I understood each other right away. After that first encounter we have remained connected ever since. Annie doesn't live in Washington, DC, so whenever she is in town (like today) we try to see each other. What Annie and I have in common, is that we both lost a child to cancer. Annie's daughter, Eloise, died 8 months after Mattie.

Making friends is a skill we have to learn early on in life. Most likely from the day we enter our first playgroup or nursery school experience. As we become older, and enter adulthood, establishing friendships can become harder or more complicated. Mainly because by this point in life, many of our thoughts, priorities, experiences, and preferences are SET. We tend to gravitate to those most like us. However, losing a child to cancer is not only a devastating thing to survive as an individual and a couple, it also is a disease that can destroy friendships. I know I no longer share in the same day to day activities as my friends and our priorities are NOW different. Not different by choice, but by circumstances. Yet at the end regardless of the cause, the result is the same..... strained or non-existent relationships. After Mattie's death, and as time continues to march forward, it gets harder and harder for me to feel emotionally connected with people. Which is why having a friend like Annie can help to normalize a very abnormal situation. We chat about our thoughts, experiences, and reactions to our losses. As CS Lewis' quote points out, it is nice to know I AM NOT THE ONLY ONE!!!!

Today Washington, DC was transformed once again in fear. Though we do not live near the Washington Navy Yard, we are close enough. With news reports coming out by the second, with different stories, different information, and hearing about shooters with military force weapons, the whole thing was daunting. My heart goes out to the 13 families whose lives have been permanently changed today. Twelve of these people (minus the assailant) woke up today thinking they were going to work, that it was going to be another ordinary day. If you aren't safe on a military base, where on earth are you then safe?! It makes you question the reality of this situation. As I was walking through my neighborhood today, everyone was talking about the shooting and questioning and discussing what kind of incident was this? Was it terrorism? Was it workplace violence with a disgruntled employee, or what?!!! We are a society that NEEDS to understand the motive, we need to understand why this happened!!!! We need all this information to gain control over a VERY uncontrollable situation. Whatever the explanation or cause of this terrorist type behavior, the end result is that it produced FEAR and many tragic deaths. Whether it is a life threatening illness or a tragedy such as today's, it makes you PAUSE and realize that tomorrow is not guaranteed.

Later this afternoon, I headed to donate all 30 bags of items from Mattie's room. I may have been sorting and loading up bags yesterday but Peter carried each and every one of these bags down to the car for me last night. He made it much easier for me today. The irony of all of this is I thought packing up Mattie's items would be hard. Not that it was easy, but that wasn't the hard part. The hard part is what remains. Last night and today, I have walked into Mattie's room, and the whole tone of the room is beginning to change. It is beginning to look well..... NOT like Mattie's room. It is hard to change this room around, because in a way his things are a reminder that this was Mattie's space. Almost that he was still PHYSICALLY part of our lives. It is now becoming a new space. I am trying to focus on the fact that it will be a space that will be usable but still a space that acknowledges Mattie's presence in our lives. But right now, going into the room is more disturbing than I could have imagined. More disturbing than when all of Mattie's items were still in there.  

Sunday, September 15, 2013

Sunday, September 15, 2013

Tonight's picture was taken in September of 2006. Mattie was never really far away from me when ever we were home. If I were cooking in the kitchen, chances are, like you see here, he was there too! Mattie was a builder by heart and he liked to create structures from just about any material. That day Mattie  decided to bring his tinker toys into the kitchen. With Mattie life was never boring, it was instead always more colorful and lively!







Quote of the day: To love. To be loved. To never forget your own insignificance. To never get used to the unspeakable violence and the vulgar disparity of life around you. To seek joy in the saddest places. To pursue beauty to its lair. To never simplify what is complicated or complicate what is simple. To respect strength, never power. Above all, to watch. To try and understand. To never look away. And never, never to forget. ~ Arundhati Roy


Last night as Peter and I were sitting on the couch, I began to talk with him about different issues as it related to our grief journey. I knew earlier in the day that Peter seemed to be in a funk, but I did not pursue it then, and frankly when in the moment of a funk, it isn't always the best time to be asking questions and trying to figure out the cause. It turns out Peter went to our local Whole Foods store yesterday morning. As he was checking out, the store clerk took an interest in our Mattie Miracle bright orange shopping bags that Peter brought with him to carry the groceries back home. In addition, Peter had a Mattie Miracle visor on. Any case, this woman wanted to know what Mattie Miracle was. She took an interest and she also wanted to know cancer stats, which Peter shared with her. While talking to the clerk, Peter was fine, but it was after his dialogue, while walking home, that his mood changed. I think he was perplexed by this reaction. This is the exact problem with grief, you just never know what is going to trigger a flare up. So therefore it is hard to prepare. My hunch is what set Peter off was not the woman or the dialogue BUT when the dialogue happened. Peter runs chores on weekend mornings as a diversion and coping mechanism. I believe weekends are the hardest for him, since weekend mornings Peter used to spend a great deal of time with Mattie. So now to compensate for the loss of a weekend buddy, Peter does chores. When his chores yesterday collided with talking about Mattie and cancer, I suspect that set Peter off. That may not sound reasonable or even understandable to an outsider. But to me, it makes perfect sense! Fortunately we can talk openly about these moments and funks and we usually can appreciate how the other is feeling, even if we do not always share the same triggers.  

Today was a beautiful weather day in Washington, DC and I suggested we visit the DC Aquatic Gardens. This is one of the best kept secrets in DC! It gets few visitors and those who visit like the seclusion, the serene, and peaceful surroundings. It attracts nature lovers and birders. I discovered these gardens years ago, and we faithfully took Mattie each year. Especially around July 4th, when hundreds of lotuses are in bloom. To see pond after pond filled with pink and white lotus flowers is a sight to see! It is unforgettable and breathtaking!

There were literally turtles everywhere today. The sun was brilliant and they were out basking in it!

This is a close up of a dead lotus flower. I would joke with Mattie, that after the flower bloomed what remained looked like a shower head. He always thought that was funny.

If you can picture the above stems with these beautiful pink lotus flowers on them, then this is what the entire area looks like in July. This pink lotus is the LAST flower at the gardens for the season.

There are wildflowers
everywhere and if you look closely you will see many bee visitors.

The ponds at the Gardens are also filled with amazing water lilies. When you see water lilies up close, I can understand why Claude Monet was inspired to paint them.  

The water lilies come in white, lavender, and pink colors!

The ponds are also filled with turtles and frogs. We caught this frog in action. I am pretty sure he was looking at us, while we were looking at him.

As we left the Gardens, I looked up and was captured by this face in a tree. This is ALL natural, the eyes are some type of fungus. Mattie would have gotten a total kick out of this and I couldn't help but laugh when I saw it.
















The remaining part of our day, I spent in Mattie's room. This September 8th, marked Mattie's fourth anniversary that he has been gone from our lives. For the past several months, I have been giving a lot of thought to cleaning out Mattie's room. Peter and I discussed it and today I seemed ready to start sorting. Peter encouraged me to begin which helped and my lifetime friend Karen sent me periodic funny or supportive emails throughout the day. Funny what a little moral support can do for me when having to approach such a task. So I started. 

It is a very personal decision if and when parents want to clean out their child's room after he/she dies. For those who never lost a child, it is easy to conclude that something is WRONG or unnatural about preserving the room of a dead child. I would encourage someone who feels that way, to bite their tongue and refrain from judgment. Parents are dealing with enough internal stress and strife over the room, and having another opinion in the mix is just not helpful. I know some parents who clean their child's room up immediately after a death, and I have also heard of stories in which a child's room isn't touched for twenty years after a death. Going through this with Mattie, I can appreciate either decision. Though for me, I could never have processed Mattie's room and things right after his death. I have needed these four years to come to terms with THINGS. As time progresses, I have learned that things are not as important. That I don't need every item to feel like Mattie is a part of my life. That wasn't true in the beginning. In the beginning I needed EVERYTHING!!! Touching anything back then would have been impossible. Certainly there are items that are still hard, emotionally laden, and represent our times together. Those items remain with us! 

The first big item to get removed from Mattie's room today was "Doctor Crazy Hair." I had Peter snap a photo of this statue Mattie made in clinic. One day Mattie decided to create his version of a doctor. This doctor had a stethoscope made of pipe cleaners, a thermometer made out of model magic, and I have no idea why, but this doctor also carried around a patient's toe nail (made out of an oyster shell) in his pocket! Mattie was never boring and that particular admission to the hospital (after Dr. Crazy Hair was constructed), Doctor Crazy Hair found a home right outside of Mattie's PICU room, and literally the good "Doctor" served as a sentinel.

For years, Mattie's bedroom door looked like this. Covered with a cutout of Mattie's actual body which he decorated in preschool and he also had other extraneous papers taped to his door which was how Mattie wanted it. Today we took photos of all his creations and then took the items down. The door now looks plain. Of course, all the items eventually need to come off of the walls since we plan on painting upstairs.

Mattie had an extensive collection of hot wheel cars, trains, and plastic miniature animals. I decided to keep many of these items, because I will use them as decorations for Mattie's new tree! Instead of buying these items, I thought it would make sense to use actual toys which he played with and loved.

This is just one round of bags that piled up in our hallway to be donated tomorrow. By the time all was said and done today, I gathered together 30 garbage bags full of children's books and toys. I can't even say I am a third of the way done. I have much, much more to do, but this was a start. Starting is always the hardest part. It is hard talking about the clean up of Mattie's room because I think the reaction of a blog reader will be...... GREAT!!! You most likely think that this shows great progress on my part and that is a symbol of me wanting to move forward. In actually if this is your interpretation, this would be WRONG! I am not cleaning out Mattie's room to forget him, to move forward, or because this maybe perceived as the healthy thing to do. I frankly don't care about the perception. What I do care about however is the state of Mattie's room. I am upset with the fact that it looks disorganized, like a warehouse (filled with Foundation items and materials), and the room doesn't do his memory or his creations justice. So it with this in mind, that I am solely motivated to clean up the room and provide space to highlight the memory and spirit of our Mattie.

Saturday, September 14, 2013

Saturday, September 14, 2013

Tonight's picture was taken in September of 2007. We all went to Nat's park that day together. I am sure someone gave Peter these tickets, since going to watch baseball games was not something we did as a family. Though Peter loves baseball, Mattie and I were more interested in the people watching and the stores within the Park. So we were a great pair together, but I am sure for Peter, we weren't the best of company on a game day. Needless to say, both of my boys had their Nat's hats on and were full of smiles, most likely for different reasons, but they were happy to be together. Regardless of what was going on around us, Mattie was always a priority for Peter. Mattie trumped baseball, golf, going out with friends, and the list could go on. I never had to remind Peter of his role and responsibility as a dad. It just came naturally to him.   


Quote of the day: Trees are as close to immortality as the rest of us ever come. ~ Karen Joy Fowler

Today we visited Mattie's school and also toured around Alexandria, VA in order to see a live Yellowwood Tree, a Red Maple Tree, and a Sweet Gum Tree. Seeing the actual trees was VERY helpful. After seeing the Sweet Gum tree, we both were able to eliminate it as a possible candidate for a memorial tree. I love the Red Maple tree, but there are actually many trees like this quite close by to where Mattie's tree sits. So from that perspective it would blend in and not be unique if we selected a Red Maple. So Peter and I officially decided on the Yellowwood Tree. It will be unique just like Mattie, it will produce flowers in the spring (which is unusual for its location on campus, since it is surrounded by non-ornamental trees), and in the Fall the tree's leaves will glow GOLD/YELLOW. Yellow is one of our Mattie Miracle colors (since Mattie loved the SUN) and it will also serve as a reminder of childhood cancer awareness in the Fall. We took one last photo today of Mattie's Memorial Oak Tree. This tree lasted three years before it died. I know some could think there is meaning behind a memorial tree dying, in fact, some of you have expressed this to me. I am not sure I want to read into why Mattie's tree died, other than, like Mattie, it too contracted a disease. Diseases can kill and perhaps this is the moral message. Some things are beyond our control, so while alive and healthy, one needs to appreciate life and the opportunity this bestows upon us.

In front of Mattie's tree, sits this memorial plaque. On May 27, 2010, during a tree dedication ceremony, Mattie's tree became an established living monument on his elementary school campus. As the plaque indicates, the tree was donated to the school in Mattie's honor by the parents and children of his class (2020).

Peter brought big loppers today to the campus to help snip off several of the higher branches which we could not reach even on a ladder. These higher branches held the beautiful acorn shaped birdhouse you see in this photo and butterfly wind chimes that sound angelic when the wind is blowing. Peter's parents gave us the acorn shaped birdhouse and each year we are sure to find a nest inside of it. Birds love Mattie's tree and it is quite clear from looking inside the birdhouse, that a baby bird hatched within it. The photo illustrates all the items we removed from the tree today and they will now await their new home upon a Yellowwood. We have placed the birdhouse out on our deck for the time being since the nest inside the birdhouse is too beautiful to pull out and clean. I am sure our sparrow and finch friends will be checking out this new addition!

Friday, September 13, 2013

Friday, September 13, 2013

Tonight's picture was taken in August of 2007. We took Mattie to Los Angeles to visit my parents and while there we went to Travel Town, which is part of Griffith Park. Travel Town is an experience, especially if you are a train buff. Trains of all kinds are on display and many of which you can climb aboard and walk through. Mattie loved playing with Thomas trains, so when he actually got to see real trains, many of which are historic, he was very excited. I snapped a photo of Mattie and Peter as they explored this train, this was just one of many they jumped aboard that day.



Quote of the day: Turning up our light in the presence of those whose light is dim becomes the difference that makes the difference. ~ Eric Allenbaugh


I want to thank so many of you for emailing me and also posting comments on Mattie's blog regarding the tree. Based on the responses I am getting, I see you all share in this difficult decision. There really isn't a winner or number one choice from our poll. I would say I have almost equal ratings for the Yellowwood, Red Maple, and Sweet Gum trees. I did speak to a tree expert at Mattie's school today, and after talking with him, I have eliminated the Sweet Gum tree. The school selects a hybrid that doesn't have the star shaped leaves or the spikey fruits hanging from it. To me, that is what makes the Sweet Gum priceless (or priceless from Mattie's perspective). So it seems to me, we are debating between the Red Maple and the Yellowwood. I learned that the school has several other Red Maples on the campus but NO Yellowwood trees. This could be potentially the first Yellowwood on the campus. As someone wrote to me yesterday, the beauty of the Yellowwood is that it blooms in the spring and in the fall it turns golden yellow (symbolizing Childhood Cancer Awareness month). Any case, I was given a few local addresses that have a Yellowwood tree in their yards, so I will be able to see a live example for myself this weekend and then try to come to some conclusions. But since so many of you weighed in on this with me, I wanted to keep you up to date on the tree.

I am rarely on Facebook, it is not a form of media I enjoy exploring. I am not sure why. Maybe because if I want to connect with friends, I rather email or text message them directly. With that said, I certainly think there are many good reasons to turn to Facebook.... to see photos, get updates on friends and family, and even to support various social causes. While visiting one Facebook page this week, I noticed that my posting about the GOLD campaign, which I wrote about on the blog earlier in the week, was mentioned. As a recap, September is National Childhood Cancer Awareness month, as such, many people around the Country are promoting GOLD ribbons and lights. Gold is the official color of childhood cancer.

The fact that my posting was on Facebook was not what caught me by surprise. Instead it was the response that someone had to my posting that shocked me. This was a person who works in the pediatric oncology arena. Her feelings were that the GOLD campaign is NICE but really isn't of substance. That we can't waste our time with things that aren't substantive, but should instead focus upon all the important strides and achievements that have been made to date. Besides rarely being on Facebook, I also rarely respond to postings that I see. But somehow this merited a response. 

Strides and achievements to date in childhood cancer  ......... UMM..................
Well let me stop and think about this. This is where we are at, you tell me if you think these are strides to celebrate:

1) kids with cancer are treated with drugs from the 1950s and 1960s
2) only one new drug (well technically two, but only one of them is an anti-cancer treatment agent) has been approved by the FDA for childhood cancer in the last twenty years
3) the National Cancer Institute spends 4% of its funding on childhood cancer
4) each day around four children die from childhood cancer
5) yearly 15,000 kids are diagnosed with cancer
6) of the 350,000 childhood cancer survivors who are living in our Country around 75% contend with life altering side effects from the treatment
7) cancer rates have increased 0.6% every year since 1975, which is an overall increase of 21% in the last 36 years

How do you like these accomplishments to date?????!!!! This is pathetic and through my lens, a mom who lost a child to cancer, this speaks to a lack of awareness of this disease in our Country.

Am I personally doing a GOLD campaign, wearing gold, and promoting this through Mattie Miracle? NO I am not. Because as the president of the Foundation I have to pick my battles and invest my time in activities that solely fulfill our mission. Yet with that said, I admire those parents and advocates in our Country who are out there and beating the pavements to bring awareness to a national health crisis. A crisis that gets talked about by politicians but at the end of the day, really gets swept under the rug. Acknowledging September as National Childhood Cancer Awareness month has to mean something and those who wanted the White House glowing in GOLD lights this month were doing just that. They were trying to get our Nation's leader to make a statement, a statement he freely makes in October with breast cancer. Sure, childhood cancer has to be more than just a gold campaign, but unfortunately we live in a world that without a campaign, media attention, and a ton of funding nothing can get accomplished. Don't down play those who are out there spreading the GOLD message around, we all have to do our part, and frankly from where I am standing true change and achievement occurs through such grass root efforts.  

I end tonight's posting with the last orange tie of the week. This concludes Tim's Orange Tie campaign for this year. Five days of orange ties in Mattie's honor was a wonderful tribute as we remember him at this time of year.


 

Thursday, September 12, 2013

Thursday, September 12, 2013

Tonight's picture was taken in September of 2008. Though Mattie's PICU room was the size of a postage stamp, we accomplished a lot in there! Dancing even occurred there, as you can see from this photo! But Mattie wasn't dancing to just any song. That day we received a special song that was composed just for Mattie. It was sent to us electronically by the Peru office of the company Peter works for. Peru wanted to show their support of us! Several the folks in the Peru office had their own band, so they got together and wrote a song called, My Little Child. I can still hear this song in my head today, and apparently when Mattie heard the song it caused him to sway his body and dance. It was a priceless song, an unforgettable moment, and it brought us much happiness that day!


Quote of the day: Legacy is not what's left tomorrow when you're gone. It's what you give, create, impact and contribute today while you're here that then happens to live on. ~ Rasheed Ogunlaru


In May of 2010, eight months after Mattie died, his class raised money and dedicated a beautiful oak tree to Mattie's school in his memory. We visit this memorial oak tree on holidays, special occasions, and anniversaries. We would be lost without this tree because it gives us a space in nature to reflect on Mattie's existence and by decorating his tree with each special occasion, it captures the attention of others and causes them to take notice. To us, this is NOT just an ordinary tree. Back in 2009, when we were working with Mattie's school to select a tree, we chose an oak tree. The oak has great significance. Mattie LOVED acorns. He collected them and actually gave them to people as gifts! He loved looking for the perfect acorn with its cap on it. However, oaks also became important to him because he quickly deduced that his tent moth caterpillars that he brought home each spring (he would find and collect them in his preschool and elementary school's playground) ONLY ate oak leaves. So the natural choice in 2009, when asked what kind of tree Mattie would like was.... an OAK!!! But Mattie's school is located in Alexandria, VA, and Alexandria is susceptible to several fungus which have been known to decimate oak trees. So we could plant another oak, but we have been presented with three other tree options today.

Mattie's school would like to replant a tree this Fall and have thoughtfully told me that the new tree will be the same size as the current tree being removed. So this won't be an immature sapling going in. Picking the next tree for Mattie is more complicated for me for some reason. The three options are: 1) Yellowwood, 2) Sweet Gum, and 3) Red Maple. I have NEVER seen a yellowwood tree in my life, or at least I don't think so. It is a rare tree to the north east, which may explain why I am not familiar with it. The Sweet Gum trees are ALL over Roosevelt Island. I did not connect the dots until I saw a photo of the fruit that falls from these trees. Finally the Red Maple, is a very common tree. Most of us could easily identify it.

I have included photos and a description of each tree below. Also my thoughts on each tree are in orange. If only the blog had a feature where I could take a poll and have my readers vote on a favorite tree. I would be curious to hear your opinion, if you would like to share it with me. Which tree would you choose and you feel represents Mattie? You can let me know by either posting a comment directly to this posting (just click on the comment link) or just email me (Vicki@mattiemiracle.com).

Yellowwood Tree (considered one of the rarest trees in Eastern North America) is native to the Southeastern United States. It is a medium sized deciduous tree that can grow on average to 33 to 49 feet tall. In the fall, the leaves turn a yellow, gold, to orange color and in the spring, the tree produces fragrant flowers that resemble wisteria.

What captures me about this tree is its uniqueness, its orange/gold color in the fall, and the fact that it BLOOMS!

Red Maple Tree is one of the most common deciduous trees in Eastern North America. At maturity the tree usually reaches 49 feet. Its main characteristic is its deep crimson red foliage in the Fall. These trees are known to live about 150 years.

This tree screams out bold, like Mattie and red was his favorite color. But it a common tree, not that this means anything.

Sweet Gum Tree is a deciduous tree that is recognizable by the combination of its five-pointed star-shaped leaves and its hard, spiked fruits. On average the tree grows to 33 to 55 feet and can live to up to 400 years. The rich dark green, smooth, shiny, star-shaped leaves generally turn brilliant orange, red, and purple colors in the autumn.

This tree has a star shaped leaf, turns vibrant colors in the fall, and has an interesting shaped fruit.

I end tonight's posting with a photo of Tim's orange tie for day 4 of the Orange Tie Campaign. Tim has worn an orange tie each day this week in honor of Mattie's life. Tim does this the week after September 8, to acknowledge a special little person who is know longer with us. Mattie would have loved this tie, because I have NO doubt he would have said it reminded him of Nemo (a clownfish), from the movie, Finding Nemo! 

Wednesday, September 11, 2013

Wednesday, September 11, 2013

Tonight's picture was taken on the first day of school in September of 2007. Mattie entered kindergarten that year and was beginning a new school. Back then I thought it was earth shattering that Mattie graduated from preschool and had to start again at a brand new school. When I look back at these normal developmental worries, it is almost laughable. When I took that photo in 2007, I thought there would be many subsequent first days of school to come. Just like any parent! In fact, while Mattie was in kindergarten, I even bought a picture frame that had a slot for a school year photo for each year Mattie would have been in elementary school. Needless to say that frame was NEVER used. I can't be the only parent who buys such a frame, but I am definitely a person who learned the hard way about the sadness that can arise when you plan too far in advance.


Quote of the day: Time is passing. Yet, for the United States of America, there will be no forgetting September the 11th. We will remember every rescuer who died in honor. We will remember every family that lives in grief. We will remember the fire and ash, the last phone calls, the funerals of the children. ~ President George W. Bush


As our former president indicated, tragedies such as September 11th are not to be forgotten. Certainly there are a host of political statements and even undertones of cultural tensions that could be discussed regarding the aftermath of this tragedy, however, from my perspective such commentary doesn't have a home on Mattie's blog. Instead, when I reflect on September 11, I immediately am drawn to the number of lives lost, the number of families torn apart and forever changed, and I also reflect on how such terror (which took place on our home soil) has changed the way we live our lives, our freedoms, and our overall sense of security.

When I woke up this morning and looked outside our bedroom window, I could see flags all over DC at half mast. Just like it was 12 years ago, it was a sunny day in DC, with not a cloud in the sky. Yet no matter the amount of time that goes by, I can always recall where I was on September 11, 2001. At that point I was two months pregnant with Mattie, Peter was working in Northern Virginia, and I honestly did not know what was going on, if we were safe, or if Peter was going to be able to drive from Virginia back into DC. The visions of what I was seeing on TV seemed too horrific to even imagine and the fact that people had to jump out of the twin tower buildings to their death still leaves me speechless. It takes your breath away. The horror can send your mind into overdrive and yet today as I was listening to the radio and could hear the chimes that rang at the 9/11 memorial in NYC (as names of victims were read), it brought me back in time.

As I was driving to Northern Virginia today, and had to cross Memorial Bridge, I was stunned by my sighting. I did not take this photo, I downloaded it, but in essence I saw 100s of motorcyclists traversing over the bridge into the city. In a way it seemed like it was Memorial Day weekend with Rolling Thunder passing through. I must admit I was disoriented at first, but then quickly deduced this must be in support of the victims of September 11. What I appreciated about this was the instant visual, the visual of NEVER FORGET! Certainly it would be easier to bury the reality somewhere out of fear, but losing a family member, friend, or any member of our community is NEVER about forgetting. It is always about remembering.

I have been looking at all the commentary on the Internet today regarding this 12th anniversary and came across an article entitled, Social Media on September 11: Should companies observe the anniversary? We live in a world of instant information, the sharing of every thought and feeling, and where Facebook and Twitter guide our knowledge and sway our decisions. Which is a scary notion in and of itself. Yet look at these advertisements.................. Someone may have to explain to me why it is deemed insulting for a LA Laker basketball player to tweet "NEVER FORGET." This leaves me perplexed, whereas the tasteless ad by Esquire magazine is down right insulting and the apology is even more disgraceful than the ad itself. If that were at all possible. But it doesn't end there. The Marriott was giving away muffins today during the 30 minute time frame when the planes hit the twin towers in 2001. This is an anniversary of a very solemn day, and when I heard about the distribution of muffins, it reminded me of someone's birthday where you get a free treat in celebration. The muffin ad was disturbing but it had competition with the golf course offering reduced greens fees today to commemorate the day! I find all of this offensive to capitalize on a National tragedy and I can only imagine how disgusted those directly impacted by 9/11 feel.

Social Media on September 11: Should companies observe the anniversary?
http://www.theguardian.com/media/2013/sep/11/september-11-anniversary-social-media

Peter flew home today from Louisiana. I wasn't thrilled with the date of his flight. In fact, at one point I wanted to tell him to come home on September 12. But then I stopped myself because living one's life in fear isn't healthy either. I have plenty of my own fears from cancer and I sometimes need to keep them in check. However, over dinner tonight, Peter asked me whether I was concerned about him flying home today. Now that he was safely on the ground, I said YES! While we were eating dinner outside, yes in the 90+ degree, high humidity (which I love!), I spotted this green friend. This grasshopper is thrilled to be on our patio and I know Mattie and Patches would have relished in this sight. Mattie would have been intrigued and Patches would have tried to capture it and eat it!

I end tonight's posting with a photo of Tim's orange tie. This is DAY THREE of the orange tie campaign, in honor of Mattie.