Wednesday, November 6, 2013

Wednesday, November 6, 2013

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




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


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

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

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

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

Tuesday, November 5, 2013

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

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


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

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

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

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

Monday, November 4, 2013

Monday, November 4, 2013

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


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

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

Sunday, November 3, 2013

Sunday, November 3, 2013

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


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

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

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

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

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

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

Saturday, November 2, 2013

Saturday, November 2, 2013

Tonight's picture was taken in October of 2008. Mattie was home recovering from his first limb salvaging surgery (you can see his arm was bandaged up). Halloween was fast approaching and Mattie decided to put on this fancy witch's hat our neighbor gave us the year before. Though Mattie was playing and trying to smile, by this point his cancer battle was beginning to take its toll out on him. It took a large number of props, toys, and distractions to keep Mattie engaged, motivated, and hopeful that we were going to fight and beat this disease. Peter and I worked very hard on this but I have to admit at times what we were seeing and experiencing were heart breaking and if not kept in check could have eaten us from within.  


Quote of the day: Empathy is really the opposite of spiritual meanness. It's the capacity to understand that every war is both won and lost. And that someone else's pain is as meaningful as your own. ~ Barbara Kingsolver


Though I suspect most people are not aware of this, today marked Mattie Miracle's 4th anniversary of incorporation. Meaning we have been a non-profit for four years and today is the Foundation's birthday. It is amazing what we have accomplished in just four years time. I should tell you that after we incorporated in 2009, several other cancer groups felt compelled to tell us that most family foundations like ours don't make it passed the first year or two. Translation, most don't last four years! All I know is failure is not an option, especially when you keep in mind that the Foundation is the organizational equivalent to Mattie in my mind. I may have failed his body, but there is no way I will let the Foundation fail. People learn that quickly about me, because in order to work with the Foundation, you have to get to know me, we have to share a vision, and be passionate about this vision. If we are not on the same page, we most likely aren't going to be working together.

Since we have established the Foundation, we have accomplished a great deal some of which include: 1) paying the salary of a child life specialist at Georgetown University Hospital for three years in a row, 2) sponsoring a monthly support group luncheon for pediatric nurses two years in a row, 3) funding a free snack cart for pediatric families caring for sick children at Georgetown University Hospital, 4) hosting successful bi-annual item drives for families caring for children with cancer, 5) coordinated the first ever psychosocial symposium on Capitol Hill, 6) sponsored the first ever pediatric psychosocial think tank at the American Psychosocial Oncology Society conference, 7) the recipient of a Georgetown University Hospital Special Recognition award, 9) granted a Distinguished Public Service Award by the American Psychosocial Oncology Society, 10) held four successful childhood cancer awareness walks, 11) lecture at local hospitals and universities about the impact of childhood cancer on the family,12) work with several local teen groups, schools, and other organizations to raise awareness of childhood cancer and funds for Mattie Miracle, and 13) we have assembled an amazing team of about 40 psycho-oncologists from around the world to work on our agenda.... which is to create a national psychosocial standard of care.

Happy Birthday Mattie Miracle and may Mattie be watching over all of us!!!

This is a photo of Mattie's room. Mattie had a beautifully large and bright room. But over the years we filled it up and certainly when Mattie was battling cancer things came into our lives faster than I could process them. Months ago if you saw this room, it was filled to the brim. This is what it looks like cleaned out. Keep in mind we donated close to 60 garbage bags of items filled with toys, video tapes, clothes, and books. However, Mattie's room no longer looks like this. Today was the end of an era. All his items were taken down off the walls and everything was covered in drop clothes. It took us over two hours to prep the room to be painted.

Mattie and I were a lot alike. We were sentimental about things and therefore liked to tape things up and display them. All of Mattie's walls were covered with mementos. Which is what made today's process challenging and labor intensive. On this wall were Mattie's class photos and items he created along the way in preschool.

Though Mattie knew I wasn't a Sponge Bob fan, he created this clay version of Sponge Bob in clinic. I think part of the reason Mattie loved Sponge Bob so much was simply because he knew it evoked a reaction from me. Needless to say, Sponge Bob has been looking at me daily for the last four years. Today I took a photo of him and we parted ways with each other.

Peter worked very hard today at scraping this wall paper border off Mattie's wall! I remember Peter and I putting this up in Mattie's room when I was pregnant. It is hard to believe that was 12 years ago! I always thought Mattie's room would be transformed over the years. After all, parents constantly change the style and content in their child's room to make it developmentally appropriate. But I never in my wildest imagination thought it would need to be changed because Mattie died and isn't a part of our physical lives. I don't think anyone could have prepared me for that. Though we are doing this painful task of cleaning out and reorganizing Mattie's room, it is still difficult, it is still hard to accept, and this should not be viewed as just a casual cleaning out process. Quite frankly it is the opposite. It is a huge and monumental deal! 
 

Friday, November 1, 2013

Friday, November 1, 2013

Tonight's picture was taken in October of 2008. Mattie had his first limb salvaging surgery and this was the first day out of his hospital room to visit the child life playroom. As you can see, we did not travel alone. Surrounding Mattie were Whitney and Lesley (child life interns, or as my mom called them "the dynamic duo"), Jenny (Mattie's art therapist), and Linda (Mattie's child life specialist). They were all encouraging Mattie to use his lungs, which is crucial after a surgery and lying in bed for days. Mattie wasn't interested in breathing exercises, but he was willing to blow bubbles. So that day the room was filled with bubbles, and it only got zanier once the huge bubble machine came out and was added to the mix. It literally looked like we were surrounded in bubbles. The floor was soaked and the whole room was a sight to see!!!


Quote of the day: A life of short duration...could be so rich in joy and love that it could contain more meaning than a life lasting eighty years. ~ Viktor E. Frankl


This morning I woke up before my alarm went off. It wasn't a natural awakening however, I was instead startled awake from a dream. I rarely dream of Mattie, but I vividly recall today's dream in which Peter and I took Mattie to a restaurant. Mattie had to be six or seven years old in the dream and very healthy. What caught my attention was Mattie's voice and his ability to get the attention of the maître D'. It was noteworthy in fact because I vividly recall Mattie taking the maître D' around his own restaurant and pointing out interesting observations to him. The rest of the dream wasn't as clear as the restaurant scene, but I know it did continue once we left the restaurant. Any case, I woke up in this fashion this morning, on a day that the Catholic religion denotes as All Saints Day. Seemed rather symbolic to me.

I am not sure why I was in a funk today, but I was. I went for a walk, and that did not seem to help. Sometimes I can walk around and feel so tired, as if each of my legs weigh 100 pounds. When I got home I wasn't feeling any better. I sat down by my computer and I happened to see a newsletter that came in the mail for me yesterday. The newsletter is published by an organization called Alive Alone. An organization that supports families who are childless due to an accident or disease. I am not always wowed by articles or even find them helpful, but as I was glancing through the newsletter, I came across an article entitled, Do you fit in?! The title alone intrigued me. So I read it. Trish's words were so meaningful to me on a day like today that I emailed her. Another thing I rarely do. But I wanted this mom, who lost her daughter 10 years ago to know that her words mattered and made a difference in my day.

Why did her words matter? They mattered because I related to what she was talking about, a daily sense of grief that can be set off at any time!!!! So well stated and yet so frighteningly true!!!! She doesn't know me and I don't know her! Yet we feel the same way!!! Like Trish, I would like to have sadness free days, but unfortunately with the loss of an only child, it is a pervasive issue that weaves into every dynamic and pattern of our lives. Doors close for us after our children die and we are faced with missed opportunities, altered futures, and such losses follow us. Every day! They don't go away after the first year, the second year, the third year, etc. After all how can they, when we live in a world surrounded by people who have healthy children who remind us of what we are missing. They tell us about their children, their growing families, family vacations, and the list goes on and on. The one thing losing an only child produces is the realization that YOU ARE DIFFERENT AND YOU DON'T FIT IN! Naturally I could say this to everyone in my life, I can report it out as I do, and yet many people discount it as Vicki having a problem and being stuck and unable to move on. Reading articles like Trish's confirms for me the reality. The reality is we are different and we are being put to the test of figuring out how to navigate life without our children. The problem doesn't stem from me, instead it was a problem that emanated from the death of Mattie and I honestly wish people could get this. It is very exhausting having to constantly be on the defensive with some people as to why my feelings are justified! I have copied Trish's article below and for those families who read this blog and have lost a child, I hope her words resonate with you too. For those of you lucky enough to have healthy children, I hope reading Trish's article gives you another point of view to consider.

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Do you fit in? by Trish Myers

I am feeling like I need a good cry today. Why? I'm not sure. There could be a half dozen reasons. Do we even need one? My LOSS of darling Allyson, age 23, was a decade ago, and the tears are not as frequent as they were. If you are in the first years of the loss of your child(ren), it is common for tears to come daily as the waves of grief flow over your tiny island of "security."

Years after our greatest LOSS, the losses continue. They come in many forms. Loss of health, physical strength, income, friends, relatives, youthful vitality, career, and connections to the daily lives of the living children who used to ground us in our day-to-day routines. I once wrote about "Compounded Grief" in an issue some years back. While the loss of a child remains the high water mark of LOSS in our lives, it does not mean that coping with life's issues is any less daunting. In fact, BECAUSE we don't have our kids, LIFE can be acutely harsh at times.

This past weekend, I saw a parent I had not seen in years. (I have learned to be polite in the face of my own fear of answers to my socially appropriate questions).  I asked about her "family." She summed up the whole big open question with just ONE very painful word, "BIG!" She further explained that she now has six grand kids, and that number from ONLY two of her three married children. Yikes!!! I wanted to run for the hills. No wonder I feel like crying today.

Honestly, that "normal" social interaction is NOT the reason for my need to cry. It is more about the daily sense of loss that is "hidden" from view but seems to plod along after me as I cope with the stages and transitions of my own life. WHERE are you in life's journey? Do you feel like joining me in a good healthy cry?

I sense that most of us are feeling that we are not "fitting in." I'm not sure it is "simply" the loss of our dear sweet souls. It IS all the other "stuff" that can sometimes weigh down our hearts, our souls, and our Spirit. These are the real or imagined "closed doors" which slam shut after the death of our child(ren). These are the missed opportunities, the loss of legacy, the missing key for the lock, the lack of a compass, and the absolute draining of our LIFE FORCE of potent energy needed for the perilous journey ahead of us. I AM certain that our children would restore much of the structure of our hearts and our lives, and we would feel a certain "Fit."

Our kids are not with us on the hard ground of planet earth. They view our struggle from a much loftier perch, (my humble opinion). My lovely Allyson, with her beautiful brown skin from Colombian parents, her life as an artist, and her raging bipolar illness; she knew about not fitting. She taught me a WORLD of wisdom on the subject.

Our bodies are weak, and our Spirit is strong. Our kids already know that. My wish is that all of the children whom we have lost can enlighten those remaining behind about the way to LIGHT our journey. Maybe a few tears splashing on the hard earth ground will help us take root and to fit in.

Thursday, October 31, 2013

Thursday, October 31, 2013

Tonight's picture was taken on Halloween of 2008. Our last Halloween with Mattie. Halloween is a HUGE deal at Georgetown University Hospital. That year Mattie was a mummy! He did not plan on this, it just happened. Days before Halloween, Mattie was invited into the clinic earlier than the other kids to look at costumes. Another Foundation provides costumes free of charge to the kids at the Hospital. A very generous and thoughtful gift! Any case, Mattie was in a bit of a state because he was recovering from his first limb salvaging surgery. As such he could barely move his right arm. So he felt self-conscious about this and truly did not even want to go trick or treating, until he found this costume. The key point to this though was that Mattie's child life specialist and art therapists knew he really needed time without the other kids around to look at costumes. If other kids were around, Mattie most likely would have walked away without a costume. He was self conscious about his looks and abilities and also was afraid of other kids bumping into his bandaged arm. I will never forget this forethought and kindness from Mattie's angels (Linda, Jenny, and Jessie). I remember being in the clinic's library and Mattie spotted the mummy costume right away. The beauty of this costume was all its fabric. You couldn't  tell Mattie's right arm was wrapped up from surgery when the costume was on!


Quote of the day: One need not be a chamber to be haunted; One need not be a house; The brain has corridors surpassing material place. ~ Emily Dickinson

I love Emily Dickson's quote as it relates to Halloween because what she was telling us is that the recesses of the brain can subject us to very scary things. Things that maybe even scarier than what we see before our eyes. It is an interesting notion that many of us can probably relate to. We all have our own stories, experiences, and memories. For me naturally, the horror within is childhood cancer. I saw the ugly and the gruesome as it related to Mattie's cancer treatment, but as Peter and I say all the time, the physical treatment is ONLY a small aspect of the process. The rest is really quite psychological and it is that piece which takes a hold of you and can alter your daily existence and the rest of your life.

It is hard for me to fathom that today is Halloween, or specifically for us the fifth Halloween without Mattie in our lives. Where we live in DC, we have historically never received a trick or treater at our doorstep. Our complex just doesn't celebrate the occasion, mainly because not many children live around us. I am not sure if this is a curse or a blessing. Would I want to see kids dressed up and would I want to distribute candy? I don't know. I know the first Halloween after Mattie died, I was at my friend's house and together with her mom, we distributed candy to her neighbors. I did just fine with that, but that was years ago, when I was numb and I needed to hold onto someone else's family because it seemed happier and intact. Could I do that now? Since I rarely spend holidays with friends anymore, I have no idea.

My friend in cancer has been talking back and forth with me today about options for Halloween. This is her first Halloween without her son and her son LOVED the holiday. Naturally I have my own lens on grieving, and my situation and experiences may not be helpful to her. I am also almost five years ahead of her on this curve and frankly I wouldn't want to know what I do now back in my first year. It is a journey and literally there is only so much one can absorb at one time during this progression. Yet our friendship is mutually beneficial and we brainstormed the notion of celebrating future Halloweens together, so neither of us would be alone or floundering. What a brilliant idea!

It think it is hard to know how to interact with a parent who lost an only child during Halloween or any holiday for that matter. I have had people say Happy Halloween to me, and honestly my gut reaction is to say...... what is so happy about it?! Those who follow my blog or have some understanding for what it must be like to be childless do not wish me such pleasantries. I find that level of sensitivity quite beautiful and experienced that from several people today in my zumba class. We may have talked about Halloween in general, but no one said... Happy Halloween! Halloween is a holiday truly for children and in a way it is a reminder once again of what is missing in our lives.

I think it is quite ironic though that in a matter of day, hundreds of pounds of candy will be transcending upon me for our Post-Halloween Candy Drive. People are coming out of the woodwork to help with this year's drive and I am getting a bit scared of what the total count will be, since last year's 1000 pound delivery was amazing. Needless to say I am grateful for this generosity and to be able to help families in the hospital! In fact, I received an email yesterday from a woman who had no idea that it was Mattie Miracle who ran the snack cart. When she found out about us and our candy drive, she expressed how she couldn't have survived in the pediatric unit (caring for her child) without the cart. This was a great gift to hear, this is why we have the cart and rely on our supporters to help us keep it stocked.

I end tonight with a few photos of the World Series Champions! The Boston Red Sox. For my faithful readers, you know that Peter and Mattie were obsessed with the Red Sox. Peter is a loyal follower and has literally snapped photos of the TV during each of the Red Sox World Series wins. So that would be in 2004, 2007, and now last night. The cult is not only alive and well, but they have to be celebrating in the streets!!! Notice the Dunkin Donuts sign in the background, also part of the cult following! Can't have one without the other.

Sheer happiness! It is my hope that those awful beards can now be shaved. Put it in context that the players even named their beards, I kid you NOT! For example one player's beard is named "the saltine" and another's is "the wolf." OH MY GOODNESS.................. do I need to say more and the fans also grew sympathy beards. Talk about superstitions, of course they won, so that only further adds further fuel to the fire.
 

Wednesday, October 30, 2013

Wednesday, October 30, 2013

Tonight's picture was taken in October of 2008. Mattie and I were in the child life playroom at the Hospital and the room was all a flutter. Georgetown students came by dressed up for Halloween and also helped the kids in the units decorate for Halloween. The pumpkin behind Mattie in this photo was a Mattie creation. Naturally Mattie took it one step further and requested black material for a cape because his pumpkin was supposed to be a HEAD. Therefore the head needed a body! Linda, Mattie's child life specialist, appreciated Mattie's creativity right from day one and Mattie had a special way about him that helped him get his needs effectively met.


Quote of the day: Home is a notion that only nations of the homeless fully appreciate and only the uprooted comprehend. ~ Wallace Stegner


Today was a sobering and humbling day. I visited a friend who I have known for years. She is bright, very compassionate, and has cared for others professionally most of her life. Yet her situation illustrates the fragility and tenuous nature of life. Since this is her story and not mine, I am not going into details about how this happened, but she landed up homeless and living in a women's shelter. I think we all have perceptions of who lives on the streets or in shelters. We make assumptions that this has to be people without a formal education, jobs, and families. These are all misconceptions. Which is why I told my friend she must write a book. As I was listening to her stories, it saddened me greatly because in reality depending upon the cards we are dealt in life, this could happen to any one of us.

Living in a shelter is a traumatizing experience in an of itself. You have to share a room with several people of your own gender, people you don't know and have (as I learned) many issues of their own. There are rules, curfews, and nightly bed checks to make sure you are in your own bed (with flashlights shone in your eyes to verify it is you). You have to eat when they tell you to and you can't bring food to your room. There are no TVs or computers! It seems not that far removed from living in a prison. But what was so upsetting to me, besides of course that my friend was in this situation, is that there is NO mental health support for the residents of the shelter. There are "counselors" per se, but in essence their job is to enforce the rules. Which means they are more like wardens than therapists. Many of the residents within this facility, as my friend described, have serious mental health issues! Some are addicted to drugs, others have schizophrenia, or personality disorders. All of which are conditions that need monitoring, medication, and/or therapy. I am simply perplexed how these folks can even have a fair chance at being productive members of society without the necessary help they need.

The shelter gives people access to food, physical shelter, and coupons to get their hair cut and to buy clothes. Though these are all necessities in our human hierarchy of needs, these are merely band aids on a gushing artery. Why do I say that? Well you can give someone all these things, but if you don't help stabilize a person, help them get the medications and trainings they need, then in my opinion nothing will change. I have no idea why I thought more mental health support was offered in shelters, but after hearing one story after another today, I felt truly dismayed. I do not care for systems that are put in place that only breed further dysfunction and dependency.

I think people enter shelters with their own stories, stories which may have left them broken for various reasons. Yet within the shelters they are exposed to others who may want to steal from them and in my friend's case one of her fellow residents overdosed on drugs and died. Adding more trauma to people who are already traumatized also seems counter intuitive.

I am in no way equating homelessness to helping someone battle cancer. These are two very different, challenging, and heartbreaking issues. Nonetheless, I feel that having lived in a hospital, which is an institutional environment to same extent, I could relate on some (small as it is) level to my friend as she talked about living in fear and under someone else's rules. As tonight's quote so aptly points out, we need to appreciate the homes that we have because so many tonight and the next night after that aren't as fortunate.
 

Tuesday, October 29, 2013

Tuesday, October 29, 2013 --- Mattie died 215 weeks ago today.

Tonight's picture was taken during Halloween of 2007. Mattie was in kindergarten at that point. This was the first year Mattie and I went out together to pick out his costume. He was very excited about this notion. He had it in his mind that he wanted to be an air force pilot. I believe his trip to the Andrews Air Force base's air show in the spring really caught his attention. When we got to the costume store the only pilot costume they had was for a Navy pilot. However, my friend Charlie who is a retired Lieutenant Colonel in the Air Force rectified that problem. She sent me all sorts of Air Force patches which I literally sewed into Mattie's costume. The outfit wasn't complete without the hat, which my neighbors gave Mattie! Needless to say Mattie had a great Halloween that year with his friends.


Quote of the day: There is a voice inside of you that whispers all day long,"I feel this is right for me, I know that this is wrong."No teacher, preacher, parent, friend or wise man can decide what's right for you--just listen to the voice that speaks inside. ~ Shel Silverstein


I started my day by going to my zumba class. I haven't been to class in two weeks, so it was good to return. I like hearing the music and moving around and our teacher has a wonderful demeanor and disposition. After class, I went with my friend Heidi for tea. Well we started with tea, but our talking led into lunch. We hadn't seen each other for three weeks, so it was nice to catch up. It was a true fall weather day, cool and crisp, but thankfully the sun was out.

Over the past day or so, I have had the opportunity to chat back and forth with the lead psycho-oncologist who has been working with the Foundation on our national psychosocial standard of care project. This clinician and researcher is going to be presenting one of her most recent studies at an upcoming international conference and she wanted to get my take on the study and the results. Understanding the science of conducting and interpreting research are skills most people with a doctoral degree possess, but what makes my particular situation unique is that I not only understand the science, I lived the nightmare of childhood cancer. I can instantly read through the data and tell you whether the observations make sense.

The study focused upon the emotional connections between couples and how this connection can be impacted by cancer and therefore potentially alter marital satisfaction. Believe it or not this is the FIRST study of its kind! I emphasize FIRST!!! I think that is rather stunning in all reality especially when one of the first things the social support staff tells you at the hospital is....... your child's diagnosis can be difficult and challenging to a marriage. I remember when I first heard that I wanted to throttle someone!!! Mainly because it seemed so judgmental and condescending! But when your social worker spouts off this information what is it really based on???? The answer is anecdotal evidence. Of course it is true, but having data (like this current study) to support these anecdotes is key! Without data you can't determine how best to assist parents and couples.

As I combed through the power point slides, several things caught my attention. One slide in particular listed the stressors couples face during the treatment process. There were about five significant ones listed and one was......your child doesn't want a particular parent in the room. Basically asking the parent to leave the room. That may not sound like a stressor, but it is a huge one. Especially when you are trying to help your kid and have potentially been in the room the whole day. It can feel like a major rejection as a parent! Mattie threw my parents and me out of the room on many occasions. He never did that with Peter. When Peter would come from work and enter the PICU room, he was deemed fresh blood by Mattie. Naturally I was eager for adult conversation, but if Peter chatted with me, that would mean he wasn't playing with Mattie. So during times of frustration and stress Mattie literally would tell me to leave. I have to admit I did not always handle it well. On one occasion I left the room, never the floor, and walked over to the transplant unit. It had to be around 9pm, and I sat on the bench outside that unit. Literally I had my feet up on the bench, I was slouched over, had tea with me, and my blackberry. I remember being angry and exhausted. But the fun that night only began. The head of the transplant unit came up to me. This physician literally asked me if it was appropriate for me to sit outside on the bench in this fashion! He is lucky I did not crown him over the head! But then I realized, he thought I worked at the hospital. After all he saw me enough. I may have put in more hours than him at the hospital. When I told him I was a parent and not an employee, he was deeply embarrassed! Funny no?!

Any case, this study resonated with me but at the same time, I asked the researcher how on earth interventions can be designed to assist couples in the throws of cancer treatment. It comes down to this, what works in a therapy session may not work in real time within a hospital room. The top two factors couples need to maintain satisfaction is the ability to talk with one another and being emotionally connected. Both factors can be close to impossible to achieve living in a hospital. So the reality is that cancer treatment almost sets the stage for poor marital satisfaction. Providing interventions is also difficult because there is just NO time. Parents are strung out and whenever there is a moment of down time the last thing one wants to be doing is learning coping skills, not to mention that in many cases both parents are not always present at the hospital at the same time. With all this being said, I am very happy to see that research is beginning to examine the much needed stresses of parents caring for a child with cancer and how cancer impacts a marriage..... and ultimately how cohesive a family is, in my opinion, impacts the child's care and treatment.

Monday, October 28, 2013

Monday, October 28, 2013

Tonight's picture was taken around Halloween of 2006. You may have noticed that I started posting Halloween photos on Sunday. So far I have showed you 2003, 2004, and tonight 2006. You could be asking what happened to 2005? Well in 2005, Mattie was hospitalized at Virginia Hospital Center with sepsis, that occurred from a misdiagnosed ear infection. Mattie spent Halloween of 2005 in the hospital. The costume you see here was his 2005 costume, but since he never got to wear it, we used it in 2006. I made this costume with Mattie's help. We cut out the felt, glued it on the sweat material, and I made a cat tail out of black stockings and created cat ears using a head band of mine. The goal was for Mattie to look like our cat, Patches! Peter captured Mattie twirling his tail in the air in this photo.


Quote of the day:
I have learned silence from the talkative, toleration from the intolerant, and kindness from the unkind; yet, strange, I am ungrateful to those teachers. ~ Khalil Gibran

 My friend Annie sent me an article from the NY Times while I was in California. Annie and I became friends over the loss of our children to cancer and our work together advocating on Capitol Hill. We have been friends ever since our first encounter and we joke with each other all the time that we keep each other sane. We tend to view things, people, and situations in a similar fashion which helps because when we think something is wrong with us, we just check in with the other to get insights into the situation.

The article Annie sent me is entitled, Ducking Grief. It is a great title, written by a mom who lost her teenager daughter to bipolar disorder. Though the disease in question is different from cancer, this mom's experiences and mine are not that far off from each other. I feel deeply for this mom because our society has some understanding and compassion for physical illness, but I frankly do not feel like we have made much head way with mental health issues and concerns. Despite it being 2013! Our society doesn't understand mental illness and in many cases people feel this is something one elects to have and to battle with. Therefore though this mom doesn't discuss the social commentary she received over the years, I can put two and two together and can only imagine.

The reason I feel confident saying this is based on my personal experience with Mattie. Mattie had cancer, and it is well documented that there is no causal explanation for the origin of childhood cancer. Yet despite that simple fact, I recall one person telling me that I did not pray hard enough for Mattie and that is why he got sick in the first place and of course eventually died. This comment occurred early on in Mattie's diagnosis journey, and I never forgot it. Perhaps this is where my issues with prayer all began! Either case, if this is what can be said about a physical disease that has no known cause, I can only imagine how people handle bipolar disorder.

This mom talks about how she literally "ducks and weaves through life." She initially would try to avoid contact with friends or those who knew her in fear of how she would react or worse what someone would or wouldn't say to her. From an outsider's perspective this may sound unusual or unhealthy. After all avoiding the world may not be the best option, especially when SUPPORT is needed to survive a loss of this magnitude. But I get what she is saying and I agree that ducking and weaving becomes a strategy many of us who lost a child to cancer perfect. Ducking and weaving is a form of coping, in the sense that we know what we can and can't manage, and therefore separate or disengage from things when we feel the outcome won't be good for us or the other people around us.

The author of the article reflects on why people try to avoid talking to her about her daughter, or talk about light and casual nonsense (and really what the new restaurant in town is serving is nonsense when talking to someone who just lost a child). Her thinking is, "I know intuitively, however, that it is not me she is seeking to protect: what she is trying to protect is her belief that she dwells in a world where children are safe, where untoward tragedies do not occur." All I can say is...... how I long for such a world!!!

Today, I went back to the article to read some of the responses to the posting. The author really got a whole range of feedback and cross dialogue. However one particular comment caught my attention and it was clearly written by a woman who had not lost a child. The woman complained that in essence it is the bereaved person's job to teach and educate those around us with regards to how we want to be treated, if we want to talk about our child, and the list went on. 

Learning how to care for someone who is grieving is a process, a process that has to be learned between griever and a friend/family member. I do not think it is the obligation of someone who is in the deep throws of grieving to stop and help shepherd friends and family members along in the process. With that said, I do notice over time many bereaved parents make it their life work to try to educate society about our child's illness and also how to treat those who survive when left behind. Do I think only fellow bereaved parents understand each other? That is an interesting issue also presented in the article's responses. I would like to think that anyone open minded and willing to explore the complex emotional issues of child loss can be helpful, but I also know from experience that fellow parents with healthy children do not like walking this road with me. So perhaps given the context of certain conversations, one needs to turn to another parent who has also lost a child. Those of us who lost children can't DUCK the grief (we may try, but it always comes back to haunt us) and are more likely to talk about the grief more realistically and openly with each other.

NY Times Article: Ducking Grief
http://www.nytimes.com/2013/10/22/booming/ducking-grief.html?emc=eta1&_r=0