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.