Mattie Miracle 2021 Walk was a $125,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

September 21, 2013

Saturday, September 21, 2013

Saturday, September 21, 2013

Tonight's picture was taken in September of 2002. Mattie was five months old and was sitting in one of his favorite vehicles, "totwheels." Mattie wasn't interested in any other form of locomotion, he despised tummy time, and sitting still. So this modern day take on a walker was our saving grace. Mattie used to follow me all over the place in totwheels and WOW could he zoom around and navigate corners.

Quote of the day: Sometimes you don't need a goal in life, you don't need to know the big picture. you just need to know what you're going to do next! ~ Sophie Kinsella

Today we continued the process of cleaning out Mattie's room. As my faithful readers know, we started this nightmare of a process last weekend. As I reflect on our home, I can recall that we have done multiple clean ups since Mattie died. We had to because literally with the amount of things we accumulated while Mattie was battling cancer, there practically was NOT enough space for us to live. By the time Mattie died, we were living in piles of things, with boxes and boxes of gifts and toys everywhere, along with medical equipment! I swear our home looked like something out of an episode of Hoarders. Keep in mind that I am a very organized person but despite that each day that Mattie was sick he received MANY items from friends, family, and the hospital. Imagine things coming into your home 365 days a year but being unable to process any of it! That was what our life was like for 15 months. We rarely saw our home for over a year. I know I did not begin to sort through any of these new items until 16 months or longer after Mattie died. I neither had the energy or the desire to touch anything.

Over time we began to donate all the new items Mattie received during his battle. Some of the unopened items actually went right back to the hospital. When I say we had boxes everywhere, that is what I mean. This isn't an exaggeration, in every room and on both of our levels. So despite cleaning out some of his things over the years, Mattie's room has been preserved as he left it for four years. Almost as if I was expecting him to walk back into our lives, and if so, I would want his room to be exactly as he left it. So he would know were everything was. In so many ways, Mattie's room was like the land that time forgot, except the land now has LOTs of Foundation items and boxes. Meaning the room was getting that warehouse look that drives me crazy. What set me off about this also was that I feel Mattie's special items were buried away and not being displayed properly. So I keep telling myself that the digging out and donation process is necessary in order to transform Mattie's room into a usable space that highlights Mattie's life. I already know what color I want the room to be and I also know that the room will have all the symbols that remind me of Mattie...... moon, sun, and butterflies. I have already begun collecting items that will fit into this new Mattie space.  

If I said that going through these items now, knowing they are being donated, and will no longer be a part of Mattie's room was easy, I would be lying. It is a difficult emotional and labor intensive process. Last week we donated 30 bags of toys and books. Today we accumulated another 15 bags for donation. I wish I could say we were done, but I am not. One of my friends asked me how on earth 45 garbage bags full of items could fit in Mattie's room?! My response is..... easily, especially if you know how to use every possible inch of space for storage. One of my fortes! Mattie collected hot wheels cars and today we went through hundreds of cars. We saved the most meaningful and collectible ones and the rest are either being donated or saved to hang on Mattie's memorial tree.

In and amongst the items I was digging through today, I came across this kindergarten class photo. Mattie's teacher sent copies of this photo home with each of the children, in October of 2008, to show us how much the children LOVED the classroom's big pumpkin. As you can see here, Mattie was sitting right near the pumpkin. I remember Mattie talking to me about this pumpkin, it made that kind of impression on him. This afternoon, I emailed this memento to many of the moms whose children are in this photograph. I wasn't sure they kept the photo, but figured they would enjoy seeing their children when they were in kindergarten. Now almost six years later, they have grown and matured. But for me, this is how I will always remember Mattie. Not at age 11 (as he would be today), but at age 5 (as he was pictured in this photo).

Another item we said good-bye to today was this Christmas Wreath from 2008. Mattie's art teacher made this thoughtful gift for him. On each of the leaves of the wreath, was a design or message from one of Mattie's classmates. This wreath hung behind our front door for four years now. Though it was hard to take it down and part with it, I felt that at least capturing it in a photo would be a reminder of the care, love, and kindness that went into this creation. The wreath symbolizes a time in our lives that was very depressing and challenging. Christmas of 2008 was a nightmare. Mattie was home, recovering from limb salvaging surgeries, was in pain, and had a host of all sorts of psychological issues arising from his treatment.

I end tonight's posting with a photo of the second pile ready to be donated this week.

September 20, 2013

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.

September 19, 2013

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.  

September 18, 2013

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.

September 17, 2013

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.

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.


September 16, 2013

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.  

September 15, 2013

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.