Sunday, February 2, 2014

Sunday, February 2, 2014

Tonight's picture was taken in September of 2008. This was a day I will never forget. I am sure if I flashed this photo in front of Peter, he would immediately remember where we were too. We were sitting in an office waiting to see an orthopedic surgeon at Memorial Sloan Kettering Hospital in NYC. Mattie had already started treatment at Georgetown Hospital by that point, but we went to Sloan Kettering to try to enroll Mattie in an experimental treatment for osteosarcoma. In order to get enrolled we had to meet with the primary investigator in person and if Mattie qualified for the study, the first infusion would need to occur at Sloan. Subsequent infusions were administered at Georgetown. I should specify that this experimental immunotherapy that Mattie endured occurred twice a week for seven months straight. It too had a host of side effects in addition to the ones Mattie endured with chemotherapy and surgeries. In any case, while we were at Sloan we made an appointment to talk with an orthopedic surgeon to get a second opinion about Mattie's pending limb salvaging surgeries. These surgeries sounded so daunting that we wanted to make sure we were making the right decision. Well this prima donna (the best description for this surgeon!), kept us waiting for two hours with a six year old in tow. When he did grace us with his presence, he only had FIVE minutes to spare with us since he had to run off to a SOCIAL engagement!!! Five minutes given the nature of Mattie's illness was hysterical and insulting. Any case, when he walked into the office to talk with us, he was talking about the surgery in quite a graphic manner, with Mattie present. I literally stopped him from talking and brought Mattie to the waiting room to sit with my parents and Karen. When I returned, the surgeon literally sat in his chair for two (of the five) minutes SILENT! We paid for this silence. In any case, after the silence (in which he looked thoroughly perplexed with his head in his hands), he proceeded to tell us that Mattie's situation was grave and if he were us, he wouldn't do ANYTHING. NO surgery and no treatment, but move to end of life care. You can imagine how this went over with both Peter and I. So when I see this simple photo, all I remember are the memories of sitting in that horrid office, and yet despite all of that we worked very hard to keep Mattie smiling that day. 


Quote of the day: Pain is not pathology. ~ Robert D. Stolorow


I woke up with a massive headache today and it has remained with me all day. I am used to daily headaches but several times during the month I have headaches which are so excruciating it is hard to keep my eyes open. Today was such a day. Nonetheless, I try to move through the pain and function. I have had this issue since Mattie was born, so I have had a long time to develop coping skills for it. I am left with no choice considering modern medicine is unable to assist headache sufferers like myself.  

My friend in cancer sent me an article yesterday from Psychology Today. I attached the link below in case you want to read it. The article is only a couple of paragraphs long but it makes an interesting point about the history of grief. Or should I say the history of pathologizing grief, which has been occurring for centuries. No wonder we live in the 21st century and have yet to make much progress in understanding loss and bereavement. How can we, when from generation to generation grief has been conditioned to be a taboo subject. 

But even worse than taboo, in the 12th century, if you experienced grief over the death of a loved one, you were considered SELFISH. That's right selfish!!! Selfish because instead of feeling happy and rejoicing that your loved one was in heaven and obtaining eternal life, you were instead grieving which really is the effect the LOSS has on YOU. Such an inward display of feelings was considered selfish. 

Moving passed the selfish mindset, we then transitioned into the stoic one. During the age of enlightenment, which signified the dawning of our modern world, the thinking was that sadness and grief could cause serious physical illnesses, and therefore to ward such an illness off, one needed a form of mental discipline to survive... in other words to be stoic. Not to reflect on feelings and to talk about the loss. It is NO wonder given the history of grief we are still screwed up today. 

Moving ahead to today's day and age, we continue to pathologize grief. It may not be labelled as selfish, or stoic, but it is nonetheless pathologized. Apparently one can't just grieve to grieve. Instead, the pain associated with grief is given clinical labels now such as depression and anxiety. Both are clinical issues which unfortunately are typically diagnosed by one's primary care provider and then quickly managed with a prescription. I say unfortunately because the mental health training of primary care providers is not adequate or sufficient. Certainly some forms of grief are in need of a diagnosis and clinical care. Yet, many are not. But feeling pain, feeling emotions, and expressing our thoughts and feelings to others over our loss of a loved one is considered odd and unnatural in our society. Meaning the griever is the one with the problem! I fear that with the change in the DSM-V coding (which is basically the diagnostic and clinical guidebook in our country to defining, labeling and treating mental illness), it will be much easier for a professional to label someone who is grieving with a clinical diagnosis (in other words pathologizing the issue). Thereby instead of addressing the grief at hand through talking, reflecting, and learning to cope with this journey, grievers will be introduced to another host of issues...... a diagnostic label and potentially psychotropic medications. Neither of which will ultimately help the typical griever. Grieving the loss of a child is a life long process and no amount of labels or drugs can take away the inevitable. 

This article is not just a history lesson for me, it is my reality. I have constantly been labeled by friends as having a PROBLEM. I mean even early on within the first year of losing Mattie. I had people who wanted me to seek treatment, see a doctor, you name it! It is a sad commentary that we live in a world in which those around us feel the need to isolate us because we make them uncomfortable. It seems to me that our society rewards those who bottle their grief up inside! Yet bottled up grief has long term negative consequences for the individual and for those around the individual. 

There is no easy fix to this complex societal issue, but I do think the more people we interact with who have suffered a profound loss, the more likely it is that we will see that pathologizing away the problem won't work. The number one way to manage and process grief is by LISTENING to it and helping the griever keep the memory of the person who died ALIVE. 

http://www.psychologytoday.com/blog/feeling-relating-existing/201402/the-war-grief

Saturday, February 1, 2014

Saturday, February 1, 2014

Tonight's picture was taken at the hospital when Mattie was in the midst of battling cancer. Linda, Mattie's child life specialist, made a deal with Mattie. The deal had to do with sitting through a scan. Actually scanning had to be one of the worst things for us to endure throughout Mattie's treatment. So much so that for many scans such as MRIs or CT scans, Mattie had to be sedated. Totally knocked out, otherwise Mattie's fear and anxiety made it impossible to complete the process. But x-rays Mattie tolerated. Nonetheless after Mattie went through limb salvaging surgeries, it was harder for him to sit on an x-ray table for long periods of time. If we did not get the right x-ray tech who understood Mattie, then x-rays were also a disaster. In fact, I came to learn that there were several techs who did not like Mattie. You can imagine how I felt about them!!! In any case, Mattie admired Linda's hospital badge and Linda not only made a mental note about that but worked her magic in the hospital to get Mattie his own badge. Needless to say Mattie complied that day with scanning and here was a photo of the prize he earned. 


Quote of the day: Nature makes nothing incomplete, and nothing in vain. ~ Aristotle

Peter and I worked today to get our folders of material together for the February 13, think tank in Tampa, FL. The folders alone are a logistical challenge because the attendees are working in groups this year, and each group is focusing on a different component of the draft of standards. Needless to say, I am glad we tackled this today rather than next weekend. Which will be our last weekend before the think tank. This week I will be mailing our exhibit hall materials to Tampa. Just prepping that and getting things organized and ready to be mailed has taken time. But given that we experienced our first exhibit hall table last February, I feel much better prepared this year. I have a better feeling of what to expect.  

The highlight of our day was watching our packs of sparrows visiting our feeders. Peter captured this photo of sparrows in motion on our deck. You can see them flapping away at the 9 o'clock position in this photo!

Unfortunately when it is cold outside, our packs of sparrows also attract predator birds. Peter saw a big bird hanging out in our commons area, so he grabbed his camera, thinking it was a red tailed hawk. However, when I blew up today's photo, I knew immediately this was NO hawk. It was a falcon. A first for us! 

When Mattie was a baby, we also fed the birds. I think we were inspired to do this because it gave us something to watch and explore in the cold and gray winter months. Mattie loved observing and taking it all in. I will never forget the day however when we were in the living room and this huge bird came to sit on our balcony. We were both stunned! At the time I did not know what kind of bird it was or its purpose for visiting. I caught on quick though! Needless to say this huge fellow was a hawk and he came to attack our sparrows. Mattie and I got an up close and gruesome view on the hierarchy of nature. It wasn't a pleasant sight and whenever I see such a predator around now, I immediately know we need to go outside and protect the sparrows. Seeing the falcon today took me right back in time. To the time when Mattie was a baby and we had our first hawk sighting right in the middle of our busy city!

Friday, January 31, 2014

Friday, January 31, 2014

Tonight's picture was taken in May of 2008. It was grandparents day at Mattie's school and as you can see this was a big deal at the school. The school hosted a brunch, held a concert, and the children get to walk their grandparents around to meet their teachers. Featured with Mattie was Debbie. As my faithful readers know, Debbie was Mattie's art teacher. She is the teacher who worked with Mattie to create the huge painting of "Mr. Sun." A very memorable and thoughtful gift Debbie gave us, because it hangs in our dining room and reminds us always of Mattie. But Mr. Sun also became the symbol for the Mattie Miracle Cancer Foundation. Mattie and Debbie got along like peaches and cream. They understood each other and I have no doubt with Mattie's creativity, he was in good company with Debbie. I will never forget Mattie's first report card, because on it, Debbie wrote that "Mattie is an old soul." To this day, Debbie has a memorial tree in her own garden for Mattie. 


Quote of the day: Music is what feelings sound like. ~ Author Unknown

Have you ever noticed that once you learn about something, you then begin to see it everywhere in your environment? Pick a topic, it really applies to just about anything. I will give you a non-cancer example. During my first visit to the Outer Banks of North Carolina (before Mattie was born), I noticed the abbreviation of OBX all over town. It was on bumper stickers, flags, and so forth. I quickly learned that OBX is the Outer Banks. When I got home from our vacation that year, I began to observe OBX stickers on cars around DC. Before my trip I wouldn't have paid a bit of attention to these letters, but having gone to the Outer Banks and learned what OBX stood for, I found that I was clued into it from that point on. 

In a way, Mattie's diagnosis and his death have both had a similar effect on me. I am now very tuned into illness and grief and loss issues. Over this past weekend, Peter was working downstairs and I was working upstairs. He was downstairs singing something. As an aside, Peter has a beautiful voice, and therefore his singing is a pleasure to listen too. Any case, while he was singing, I asked him if he remembered the Christopher Cross song entitled, Think of Laura. I had heard it while out and about one day, and it stuck with me all week. Not necessarily because of the lyrics at first. Something about the song caught my attention. So Peter went on line to listen to it. Peter immediately said to me, that I most likely related to it because it is about LOSS. I have to tell you I have heard this song for years, and only now put two and two together. Death of a child wasn't on my mind before 2009! 

So when Peter told me the song was about a death, I googled the title. Indeed he is right. The death of a young adult named, Laura. I had no idea that the song 
became popularized when the American television network ABC began playing "Think of Laura" in reference to characters on the soap opera General Hospital. One of the program's supercouples, Luke and Laura, who were quite popular at the time, and the song came to be associated with these TV characters. 

Cross allowed ABC to use his song in that context, however, he stated that he wrote "Think of Laura" not in reference to the television characters, but to mourn the death of Denison University college student Laura Carter who was killed when she was struck by a stray bullet fired over a block away, during an altercation between four men. Carter, was a lacrosse player from Wayne, Pennsylvania, and was sitting in the back seat of a car, being driven by her father, who with his wife, was visiting their daughter for the college's annual homecoming weekend. They planned to take her and two friends to dinner in Columbus, Ohio, having just watched them compete in a lacrosse match.

Cross had come to meet Laura through her college roommate Paige, whom Cross was dating at the time. Cross wrote the song as a way of offering comfort to Paige, and honoring Carter's memory.

I copied the lyrics to the song below, and also attached a link to the actual song. What a way to memorialize Laura.... through music. Now every time I hear this song, I think about a life taken too soon, the impact Laura's tragic death must have had on her parents and family (which I now totally understand!), and of course, when I hear "Think of Laura," I somehow THINK OF MATTIE. Though Christopher Cross is saying Laura would want us to LAUGH rather than cry, it is quite hard to do such a thing especially when the life taken too soon is your own child's.

-------------------------------------------------------

Hey Laura, Laura
Hey Laura, Laura

Every once in a while I'd see her smile
And she'd turn my day around
A girl with those eyes stared through the lies
See what your heart was saying

Think of Laura but laugh, don't cry
I know she'd want it that way
And when you think of Laura, well, laugh don't cry
I know she'd want it that way

A friend of a friend, a friend to the end
That's the kind of girl she was
Taken away so young
Taken away without a warning

Think of Laura but laugh, don't cry
I know she'd want it that way
And when you think of Laura, well, laugh don't cry
I know she'd want it that way

I know you and you're here
In every day we live
I know her and she's here
I could feel her when I sing

Hey Laura, where are you now?
Are you far away from here?
I don't think so, I think you're here
Taking our tears away

Think of Laura but laugh, don't cry
I know she'd want it that way
And when you think of Laura, well, laugh don't cry
I know she'd want it that way
Well, I know she'd want it that way

Hey Laura, hey Laura
I know, she wants it that way
Hey Laura, hey Laura
I know you want it that way
Hey Laura

Think of Laura: http://www.youtube.com/watch?v=kfb12_6JnKw

Thursday, January 30, 2014

Thursday, January 30, 2014

Tonight's picture was taken in February of 2008, basically five months before Mattie was diagnosed with cancer. That afternoon, after school, Charlotte came home with us. This was Charlotte's first visit to our home and as you can see she and Mattie had a great time jumping up and down. I want to point out the kind of character Mattie was. If you look closely at his bed, you will see his mattress covered in a yellow dinosaur fitted sheet. But notice there was something blue on top of it. Mattie insisted one day that we inflate an aerobed mattress. So literally Mattie went through a phase of sleeping on top of two mattresses at night. As my faithful readers know, Mattie and Charlotte met in kindergarten and became instantaneous friends. In fact, Mattie called Charlotte "his girlfriend" and said he was going to marry her. He was so convinced of this that he gave her a plastic ring from a dentist check up. The ring was his version of an "engagement ring." I have to admit this was all very intense for me with a five year old, but I did not fight it. On some level Mattie knew he had to express his true feelings early on in life, because time was not on his side.  

Quote of the day: In the sweetness of friendship let there be laughter, and sharing of pleasures. For in the dew of little things the heart finds its morning and is refreshed. ~ Khalil Gibran 

I spent most of the day working by the computer. As my faithful readers know, my desk and office space is now in Mattie's room. I have set up shop right by the window. In the winter, I can watch the birds at our feeders and in the spring and summer, I will be able to see our garden and listen to Mattie's fountains. Fountains which Mattie and Peter made by hand for my birthday in 2008 (days before Mattie's diagnosis!). While working today, two friends passed by and waved hi to me. With that, I opened the window and got to chat for a few minutes before we all froze and had to go back inside. I enjoy my window views and I know friends are getting used to seeing me sitting there.  

In the midst of working, I took a break and made chocolate pudding for my friend Mary who lives in an assisted living facility. While doing this, my friend Karen who lives in New York City was text messaging me back and forth. She wanted to know what I was up to at that moment, and well I told her about the pudding in process. On a cold, long and busy day, I must admit chocolate pudding sounds quite good too. Any case, by the time we finished typing, I think I left Karen with pudding on the brain. After work she went shopping in the city and snapped a photo of pudding in her store. What fascinated the both of us was the PRICE! Check out how much a small container of chocolate pudding is in NYC!!! I told her I am ready to move to NYC, make pudding and sell it for a profit. Money going to the foundation!!! 

Like tonight's quote pointed out sharing of laughter and life's simpler pleasures have great merit. This photo of pudding had me laughing and somehow the laughing helped make the day a bit lighter. The irony about all of this is as a grieving parent, I have had to learn (and it has taken me a while) that in the midst of remembering Mattie and living with his loss, that I am also permitted to laugh and experience other things. This is a very hard rude awakening and at times still hard to accept. Because sometimes in laughter or moments of happiness, I feel intense guilt, conflict, and confusion. 

Wednesday, January 29, 2014

Wednesday, January 29, 2014

Tonight's picture was taken in January of 2008. This was only six months prior to Mattie's cancer diagnosis. Rather hard to grasp really, especially when you see him in this photo. Mattie looked healthy and happy. Like a typical five year old. On the weekends we always went for a walk and we practically knew every nature trail and preserve in our local area. As you can see, Mattie found a stick along his journey that day. Not an unusual occurrence, since Mattie always came home with a prize. We had quite the stick collection in our commons area at one time! 



Quote of the day: The most important story we'll ever write in life is our own-not with ink, but with our daily choices. ~  Richard Paul Evans


Last night I returned to the university that I used to teach at and gave a guest lecture about children and loss. The class was comprised of master's and doctoral level counseling students. Though the building I was in had been completely remodeled, that was about the only thing that was different. I suppose I could enter a classroom and just start talking, but to me it is always important to know who sits before me. So before discussing childhood cancer, Mattie Miracle, and the impact of a cancer diagnosis on a child and family, I wanted to know why each of the students enrolled in such a class. After all, this class is an elective, not part of the core curriculum. Loss is a very challenging topic for our society and frankly mental health professionals are NO different. It is equally difficult for many of them to discuss and process. 

I have lectured about childhood cancer in MANY different settings now. Whether in a university, hospital, or at a conference. After I tell our story about Mattie (and of course I talk about other things as it relates to childhood cancer, but the reason behind my knowledge is always discussed first), take a guess at how many people usually say to us...... we are sorry for your loss???! Really, guess! Maybe you are thinking half of the audience or perhaps a third? Keep in mind I am talking to people either trained to deal with life threatening medical issues or those with counseling skills. Well the answer to my question is there is usually one or TWO people at the most who tell me they are sorry for my loss. ONE or TWO!

In fact after class last night, one young lady came up to chat with me. She was intrigued by my statement that grief books were not helpful to me as a parent who lost a child to cancer. So she wanted to know what kind of things would have been helpful to me early on. We discussed this for a while and then she told me she was sorry for my loss. So the question is why is this? Is it because this is an academic talk, or a talk in a more formal setting? Is it because people are taking in the information without truly grasping the profound emotions that underlie the content? Or better yet, do we put up defenses or protectors in situations like this so as to not break down and feel the pain? I don't know the answer to any of my questions, but this is a consistent observation I make at each of my talks. I know I am getting the content out and I am also hitting on emotions and feelings, because at times I can see tears and heightened levels of discomfort in those around me. I really think it is hard for others (even professionals who want to work in this field) to step outside their comfort zone and be human. As I told the class last night, doing grief work requires one to be uncomfortable at times (after all you are going to see and hear people in pain), to be open to listening, and to not have quick fix answers. Which is all quite problematic in our high tech/fast paced 24/7 world. 

As I end the day today, I received a lovely message from my friend and colleague which brightened my evening. In her message she said, "What I admire the most is how you take your sadness and create joy for others just knowing that you are out there." When my friend signs her emails to me she typically says..... "Your friend in all ways and always." Which I absolutely love! May we all have a friend who cares for us in all ways and always. It certainly makes my grief journey a bit more manageable. 

Tuesday, January 28, 2014

Tuesday, January 28, 2014 -- Mattie died 229 weeks ago today.

Tonight's picture was taken in March of 2007. Hard to believe it snowed in March, but it did! Mattie loved the snow, particularly creating in the snow. As you can see he collected as much snow as possible and built snow castles around his green frog sandbox. Not unlike at the beach, whenever Mattie created a castle, he always decorated it with found objects. At the beach that was usually shells, sea glass, sea weed, and wood. However, on our deck the things he had access to were his ever growing rock collection. Rocks which Mattie collected from just about anywhere. Any time we went for a walk, Mattie always came home with a natural prize.


Quote of the day: When a depressed person shrinks away from your touch it does not mean he is rejecting you. Rather he is protecting you from the foul, destructive evil which he believes is the essence of his being and which he believes can injure you. ~ Dorothy Rowe


Tonight's quote gives us some raw insight into depression. Though Mattie's blog doesn't focus on this topic, I think this issue was pervasive when Mattie was diagnosed with cancer and most certainly after his death. In fact, depression is much worse for me after Mattie's death than while he was battling cancer. When Mattie was in the throws of his cancer journey, Peter and I were just trying to stay afloat and manage Mattie's care needs and medical decisions. There was no time to process things on a more emotional level and therefore, it was hard for depression to grab a hold of us. Anxiety, stress, anger, and general sadness......... YES, but the hopelessness and despair of depression was not on my radar scope. It couldn't be. I had to be strong, positive, assertive, and manage Mattie's care. Since Mattie absorbed my every move, I did not want to startle or alert him anymore than was truly necessary. 

When I read tonight's quote, I literally replaced the word "depression" with "grieving." By doing this, it captures the essence of what I think bereaved parents struggle with. We struggle to fit in, and the struggle isn't unfounded. We struggle because we literally don't fit in anymore. Sometimes these feelings are so intense that to protect ourselves from further hurt we will reject the attention of others in our life. Part of it is to protect ourselves and the other part is to shield those around us from the reality that we see, know, have felt, and observed. After all if you see what is truly inside our heads, it may scare you and it also may injure you. It injures us emotionally, so why shouldn't it also injure you? 

In between working today, I had the opportunity to see two friends. Both of whom have neurological diseases. Diseases which have left them wheelchair bound, unable to move (not even a hand), and with the inability to speak and communicate. It is very devastating to be around a person like this, especially if this is a person you know and care about. Some days I can put these visits in better context than others. However, today wasn't one of those days. The cornerstone of most relationships is being able to share thoughts and feelings, but what happens when this only goes one way now? Does the friendship still exist!? Well of course the answer is yes, but it just takes much more introspection and reflection of memories to guide the new dynamics. If I said the gut instinct to walk or maybe run away from the situation did not cross my mind, I would be lying. I don't want to see or remember my friends as they are now. Just like I do not want to remember Mattie as fighting and dying from cancer. But the reality is, we do not always get what we want in life. We can either bury our heads in the sand and do what is easier, or somehow rise to the occasion and in the process learn more about ourselves and our ability to connect with someone on a non-communicative level.

This evening I head to the George Washington University to give a guest lecture on children and loss. I did this session last year at this time of year. However, it is hard to believe that in 2008, I had my own classes. It seems like a lifetime ago, as if it I were a different person altogether. I am in the same body, but everything on the inside has changed. I have been invaded and my body has been snatched up by grief. 

Monday, January 27, 2014

Monday, January 27, 2014

Tonight's picture was taken in October of 2007. If I had to entitle this photo something it would be, "ENOUGH IS ENOUGH already!!!" As you can see Mattie was on the floor laughing and yet using his arm to hide his face from my camera. There were moments when Mattie couldn't take my need to capture a photo. That was just such a moment. 


Quote of the day: There is no point treating a depressed person as though she were just feeling sad, saying, 'There now, hang on, you'll get over it.' Sadness is more or less like a head cold- with patience, it passes. Depression is like cancer. ~ Barbara Kingsolver


The other day I received an email from a friend and colleague. She wanted me to know that she had a vivid dream and Mattie was in it. The dream wasn't your typical dream with a child in it! Instead my friend's dream involved Mattie conducting a research presentation with her. In fact, in the dream he was rehearsing his presentation with my friend and was determined to get his delivery just right. I asked my friend how old Mattie was in her dream? After all, most researchers are typically adults, especially if Mattie was co-presenting with my friend. Turns out Mattie was ONLY seven in her dream and yet she said he was "a pistol." He had spunk, determination, and could hold his own with the adults around him. I find all of this absolutely fascinating because my friend knows Mattie solely through the blog. She never met him in person. Yet despite not having direct knowledge of Mattie, she was able to capture his personality beautifully and in a way as I told her I don't believe in coincidence. To me, Mattie was sending me a message, through my friend. There would be no other reason for my friend to dream about Mattie, much less dream about him presenting research to an audience. I must admit that this dream leaves me in great reflection. 

My friend's interpretation is that Mattie wants Peter and I to know he is proud of us. He is proud of the psychosocial research we are involved with on behalf of children with cancer. Maybe this is correct. As Mattie's art teacher at school always used to say, "Mattie is an old soul." Also true! This old soul was communicating to my friend and I am so grateful that she took the time to tell me. She could have easily kept the dream to herself, but I would have missed out on this wonderful Mattie sign. Post-Mattie's death, I look for signs in everything around me. Not that I sit and wait for them, but I am open to them in whatever form they come to me in. Even an email!!!

In the midst of working today on various Foundation items, I had the opportunity to have lunch with my college roommate. Leslie's daughter has done many wonderful projects with Mattie Miracle and her latest endeavor is to make these stretchy band sunshine key chain pulls. These stretch bands are very popular with the pre-teen and teen crowd! Faye's bands will be featured and sold at this year's 5th anniversary Foundation Walk. Needless to say I got a preview of Faye's lovely work and now I am happy to be able to have a sunshine (a Mattie symbol) on my purse. A real highlight of my day! I always feel it is a GREAT gift when I hear our Foundation message is getting into the hearts and minds of the next generation. 

Sunday, January 26, 2014

Sunday, January 26, 2014

Tonight's picture was taken in December of 2007. Mattie was dressed up for a holiday concert at his school. Before heading off to school, I snapped a photo of Mattie in front of our tree. As you can see, Mattie decided to give me a funny pose. Getting dressed up in a tie and jacket was a big deal for us. This was a first for Mattie and frankly I wasn't sure either one of us could manage the process in the morning. Mattie typically did not like uncomfortable clothes, but that day he rose to the occasion and kept his jacket and tie on for the whole day. I remember watching Mattie and his class performing in the concert that day and I really thought I would have many more school holiday concerts to experience with Mattie. Little did I know that it was going to be our first and last.  

Quote of the day: On particular tough days when I feel that I can't possibly endure, I remind myself that my track record for getting through bad days is 100% so far. ~ Open to Hope Foundation


My friend in cancer sent me tonight's quote. When I read it, it immediately resonated with me. Right now I feel like I am on Foundation OVERLOAD. I am balancing a ton of projects and planning for several events. Needless to say, I feel like I have been captured by my computer all week. In moments like this, I experience a lot of self doubt and feel as if I can't possibly get anything done, that things won't work out, and I will miss deadlines. Yet then I pause and reflect on the nature of tonight's quote and realize that my middle name must be endurance. Well technically my middle name is Anne (after my grandmother) but in all reality, surviving the death of a child to cancer builds up qualities I never knew I had before. Or course I would have been just fine being ignorant of these skills and therefore never knowing what osteosarcoma was, is, or can do to a child. 

I love this portion of the quote...... "my track record for getting through bad days is 100% so far." What is a bad day?! That could be up to interpretation because the BAD days could have been the days when Mattie was battling cancer or the even WORSE the days we now face without Mattie's physical presence in our lives. In summary though what this quote implies is I am a SURVIVOR. 

Even before Mattie got sick with cancer, people always made fun of me in graduate school and when I was working. The joke was.............. Vicki must never sleep! Mainly because I can work non-stop for days and can get a project done. A Clydesdale of the human world I suppose. So I had that propensity anyway, but I would say it has magnified by 10 since Mattie died. During Foundation busy seasons, I constantly work. Weekdays, weekends, morning, night, it doesn't matter. Partly I work this hard because this is what it takes to run a business of any kind, but the other reason I work is it is better than the alternative. The alternative is dwelling in grief. Naturally I have my down moments, but when I am very focused and working hard, it is hard to have a minute to be down, depressed, and sad. Which are natural tendencies for me since Mattie died. In fact, it is usually post-Foundation events and activities when I become even more depressed. Which is why receiving a quote like tonight's makes me stop, pause, reflect, and realize that my road to survivorship has been paved with many ups and downs so far. Surviving each day without Mattie takes super human strength and courage and bereaved parents need to constantly remind ourselves that we are being tested not just on our child's diagnosis day, but every subsequent day thereafter.  

Saturday, January 25, 2014

Saturday, January 25, 2014

Tonight's picture was taken in December of 2007. I call this photo..... Mattie's eclectic look! You will notice he was wearing two shoes. One of which was his own and the other was Peter's, not to mention the two hats, sunglasses (in December), and his duck whistle. Mattie walked all around our home like this on that particular day, and it seemed noteworthy to me. Or noteworthy enough to take a photo. I really do not know what I would have done if Mattie had been alive before the age of digital photography. I would have a lot less photos and it would have been impossible to organize them and share them like I do. 


Quote of the day: Deprived of meaningful work, men and women lose their reason for existence; they go stark, raving mad. ~ Fyodor Dostoevsky

I have been working intensely this week and basically had trouble getting it together today. Even after sleeping the entire night, after breakfast I fell asleep on the couch. Not being a napper at all, this was unusual for me. But Peter encouraged us to get moving and out today. It is frigid here, so the notion of going anywhere isn't truly appealing. The highlight of my week at home has been watching the birds. Our packs of sparrows have returned! I learned today that sparrows can live up to 20 years or so, so I really have no doubt that we have many return customers to our feeders year after year. It always amazes me how they know to come back to our deck! I am not sure what I love more, seeing the birds or hearing them. I absolutely love hearing them chirp and communicate with one another, not to mention observing their pecking order on the feeders is hilarious. All I know is it is great entertainment during the winter and in a way it makes me feel connected to nature and the outside world. Check out the sparrow who literally is clinging to the brick wall above the feeder. That to me this looks like a feat. 

Peter and I went out today to run chores and somehow while out, I saw several children walking with their parents. Many days I can put this into context, and not apply that context to my own life. However, on days when I am tired or stressed out, I become more vulnerable. Meaning that I can look at other parents with their children and really feel CONFUSED. I am confused because I do not understand why we do not have Mattie by our side. This mind game can actually throw you for a loop. Rationally I know Mattie has died and isn't with us, but there is a level of simple chaos inside my head. Why did Mattie die? Was I ever a mom? Why can't I remember those days as clearly? All I feel and live with now is days without Mattie..... the grieving days. It is quite hard to have a child and then not have a child, and no amount of logic and reasoning seems to straighten this out for me. 

Another bright spot in our home right now is our amaryllis. Peter got me an amaryllis for Christmas of 2012. This plant blooms only around the holidays and then the flowers die off for the rest of the year. But it is a bulb and therefore like all bulbs it shoots up at a particular time of year. This is the second year our plant has bloomed for us and it is so stunning. I wish it would last forever. In the midst of the cold and grayness it is a beacon of life, color, and hope. This flower is not unlike a griever. In which a part of it dies each year, but if nurtured by the environment and exposed to the right kind of care, something ignites from within and blossoms. May all of us grieving find the right setting and environment EACH YEAR to heal, be nurtured, understood, and inspired so that we may re-engage with the world around us. 

Friday, January 24, 2014

Friday, January 24, 2014

Tonight's picture was taken in January of 2006. This has to be one of my favorite photos of Mattie. I caught him while in the tub, soap all over himself, and in his element of playing with water. When there are days I get down and am exhausted from Foundation work, I turn to my Mattie wall of memories (canvas photos of Mattie now in his room), and this pushes me forward to continue on. "On" can mean many things, but it does give me a will and purpose for living. Because I know without doing what I do, there is no Mattie Miracle Cancer Foundation.  

Quote of the day: As for accomplishments, I just did what I had to do as things came along. ~ Eleanor Roosevelt

I think Peter and I relate to Eleanor Roosevelt's quote, especially when it comes to Foundation achievements and accomplishments. We do what we have to do and address needs and issues as they come along to us. Okay, well perhaps that is an over simplification of what we do, but in a nutshell, neither of us set a Foundation goal so that we can be recognized and given kudos. Which is why when I received a phone call from Tim (our friend and Georgetown University Hospital administer), that we were nominated and selected to be the Hospital's Flame of Hope recipient this year, I was STUNNED. Part of me is still stunned. 

I must admit when Tim told me about this honor, I had no idea what he was talking about. I did not know what the Flame of Hope award was and I also thought the gala for the Hospital had already past. See where I am at! Needless to say this award is given at the Hospital's gala in March. The mission of the gala is the following:

Georgetown University and Medstar Georgetown University Hospital recognize that a key mission of an academic medical center is to provide personalized medical care of the highest quality combined with state-of-the-art medical technology. Our programs provide the most advanced treatments, but do so in the context of “cura personalis” – care for the whole person. The proceeds from the Fifteenth Annual Georgetown Pediatrics Gala will support research programs in General Pediatrics and Adolescent Medicine at MedStar Georgetown University Hospital (MGUH) and Georgetown University Medical Center. In addition, the 2014 Gala proceeds will be used for clinical, teaching and community pediatric programs that support children and families served at MGUH in the Department of Pediatrics.

What I did not know was the history of the gala and why it was created in the first place. The gala started in 2000, after Mary Hoobler lost her husband at Georgetown University Hospital. Her husband, Jim, developed a post-surgical breathing disorder in which he had to be admitted to the pediatric intensive care unit, because it was there that a specialize treatment (Extra Corporeal Membrane Oxygenation) was available. After exploring many options to honor Jim and to somehow repay the pediatricians and nurses who cared for her husband with extraordinary compassion and tremendous dignity, Mary founded the Georgetown Pediatrics Gala. In her own words, Mary “decided the best way I could repay these exceptional professionals and celebrate the excellence that lives at Georgetown, was to raise funds for Georgetown’s critically important clinical and community pediatrics programs.”

  

I had the opportunity to have an email exchange with Mary today and I told her that I am inspired with individuals like herself who experience a great loss and yet find a way to channel that grief to help countless others. Needless to say Peter and I are very honored to receive this award and I was deeply touched when Tim and Dr. Aziza Shad (the director of the pediatric oncology program at Georgetown and one of Mattie's doctors, actually the doctor who helped Mattie die) told me today that Mattie Miracle is not only a local foundation it is a national organization and is accomplishing things that are noteworthy, important, and help countless children and families.  

As I absorb all this excitement today, and naturally always pause to ask myself..... I wonder what Mattie would say about this?!!! If you would like to learn more about the Flame of Hope Award, I attached two links below. Past recipients have been people like Laura Bush and Tipper Gore. Certainly I do the work for Mattie Miracle daily, but without our countless supporters, nothing could ever be achieved. So when we accept this award in March, please know that we accept it with all of you in mind. 

http://pediatricsgala.georgetown.edu/Fact%20Sheet

http://pediatricsgala.georgetown.edu/flameaward/