Saturday, January 31, 2015

Saturday, January 31, 2015

Tonight's picture was taken in February of 2003. Mattie was ten months old. He clearly could stand at that point but he wasn't walking, nor was he tottering. We tried to look for toys or things to engage him that would cause him to be on his feet and have to move his body to take steps. Mattie loved this musical table because of all its gadgets and sounds. It did get him to move around the periphery of the table but Mattie was a cautious fellow and therefore would never let go! Mattie was considered a late walker, but once he started walking, he basically moved right into running. Mattie did things on his terms, not based on when a guide book said it was time.  


Quote of the day: Hope is a tease designed to prevent us from accepting reality. ~ Dowager Countess of Grantham (Downtown Abbey)


If you are a Downton Abbey Fan, and watch this series on PBS, then tonight's quote may sound familiar. That is because it was delivered in last week's episode. I know when I heard it, I absolutely LOVED it! I loved it because unfortunately it is VERY TRUE. It isn't politically correct and it isn't optimistic. But that is just it, it is the reality of the situation. When we are in times of great stress and crisis, this is when people want to turn on the hope and throw platitudes at us. Certainly sometimes this is helpful and needed. But sometimes it really isn't! Sometimes we really need to wallow in sadness, grief, and in our situation. We need to be upset, angry, sad, and down right disgusted. Sometimes hope side steps these feelings and shuts them off from being expressed because the people around us can't handle them. 

Peter is in Boston visiting his parents and I am headed to Los Angeles bright and early tomorrow morning to visit my parents. We do these separate trips but in all reality we tend not to like being apart from each other since Mattie died. I suppose that is a consequence of losing a child. While Peter was gone today, I was busy working on Foundation things and packing, but life here seemed very fragmented and just not right. The highlight of my morning happened while I was working on the computer. I noticed out of the corner of my eye movement. So I looked out the window. There was a man by my bird feeders. I noticed this same man examining my bird feeders last weekend too. This weekend he was back but he wasn't empty handed. This weekend he brought bird seed with him and actually filled the feeders. When he turned around, I waved to him through the window to thank him and he waved back. Well he made me day!!!! I feel like the feeders are building community in the complex, because basically living in the city there is NO community! People pretty much keep to themselves. This was very different from my Boston experience. I knew my neighbors in Boston and we did things together. Not in DC! It is more like NYC. In any case, I was so happy to see a fellow bird lover and one who wanted to help feed the birds with me! 

Another highlight of my day was receiving this! My friend in cancer took my list of Mattie descriptor words that I generated the other day and put them in the shape of a heart and sent them to me. It is a Valentine's day gift! 

Friday, January 30. 2015

Friday, January 30, 2015

Tonight's picture was taken in March of 2009. It was the grand opening of the Children's Art Gallery at Georgetown University Hospital. Mattie and I had worked on pieces of art to display together for this exhibit. The theme for the exhibit was..... what should an ideal hospital room or unit look like? Of course Mattie's media choice was what else???? Legos!!!! Mattie created a model of an ideal hospital room made out of Legos and then wrote a creative story about it that was framed and on display. The grand opening was a festive occasion and pictured with us were:

Back row (left to right): Peter, Vicki, Meg (child life intern), Jenny (art therapist), and Linda (child life specialist)

Front row (left to right): Kathleen (Hem/Onc nurse), Mattie, and Brandon (Mattie's big buddy)


Quote of the day: I have been impressed with the urgency of doing. Knowing is not enough; we must apply. Being willing is not enough; we must do. ~ Leonardo da Vinci


Today I went back to Georgetown University Hospital to visit our friend Bridget and her mom, Cathy. We have known Bridget since Mattie was diagnosed with cancer. Bridget and Mattie were diagnosed with cancer around the same time. So in essence I feel as if I am on this journey with Bridget and her family in a small way. I do think starting the process together makes a huge difference and I will never forget when Mattie was battling cancer how wonderful, kind, and supportive Bridget's family was to us. Some things you just don't forget. 



On my way up to visit the cancer unit, I walked through the Children's Art Gallery. The same gallery I just mentioned above. Guess what? Mattie's framed story is still on display, as is my canvas describing the ideal childhood cancer hospital/room! I know a great deal of this is due in part to Linda, Mattie's child life specialist. I do not know how Linda enables these two pieces to be part of the permanent collection, but all I know is I LOVE seeing them in the gallery whenever I walk through it! I feel as if it is part of Mattie's legacy in the hallways of Georgetown. After all, Mattie was part of the opening ceremony for the Gallery!

As you walk down the hallway above, you see a painted dinosaur at the end of the corridor! Well right next to him on the wall is displayed "Mattie's Story!" How did this story evolve? Well Mattie designed the Lego model below and he loved it so much, that he played with it! As he and I kept playing with it, we started making up stories about characters escaping from the hospital to get pancakes (since the food inside the hospital was SO BAD!) and getting into all sorts of trouble! The only one who could save these troublesome boys was Engineer Mattie! 

This is what Mattie's Lego Hospital looked like. Again this was what Mattie conceptualized a child's hospital room and unit should look like! In Mattie's mind a hospital unit needed to have an OUTDOOR play area with trees and natural space to play. In addition, he wanted rooms with closets and private bathrooms to accommodate my needs and address my complaints. His hospital thought of it all!

Next to Mattie's framed Lego story is my art work! It is still on display today! I created a collage that made various statements! A great deal of the statements had to do with holistic care.... about the importance of child life, art therapy, and the need to provide a safe, serene, and enriching environment that not only meets the physical needs but the emotional needs of children/families throughout treatment.  

When I stepped off the elevator today and onto the pediatric units, I was greeted by an electronic sign that read what you see here! 


I spent several hours at the hospital today and throughout my stay I saw a countless number of people who helped us during Mattie's journey. It really does not matter how many years go by, for Peter and I, Mattie's memory and what he experienced live within the hallways of Georgetown University Hospital. 

Thursday, January 29, 2015

Thursday, January 29, 2015

Tonight's picture was taken in January of 2009. Mattie was attending his friend Charlotte's birthday party. I remember this weekend very well because Mattie attended two parties back to back. But that wasn't what was noteworthy, but caught my attention was I saw first hand how different Mattie was physically from his peers and how some of them pointed this out and even made fun of him. I wasn't prepared for this to happen especially since the majority of them knew Mattie was battling cancer. Nonetheless, I couldn't react negatively to the comments because that would have made matters worse and also would have signaled to Mattie that something was very wrong and that perhaps he wouldn't return to living the life that he once knew. Which would have been too scary to face at that point in time. 


Quote of the day: We do not remember days; we remember moments. ~ Cesare Pavese


This morning I received an email from my friend Lisa. She sent me an email because she wanted me to know that she had a dream last night. Her dream was about Mattie. In particular about Mattie's art work which was being displayed on a website devoted to Mattie's works. Apparently Lisa's dream was so vivid that she could recall that at least two of the art pieces were of a race car and of a turtle. Rather ironic I think since Mattie LOVED cars and sea turtles!!! Lisa woke up feeling that she just saw some of the most beautiful things she ever had seen and felt the need to contact me and let me know. I really feel somehow that Mattie had a message he was trying to communicate to me through Lisa. Nonetheless, I loved hearing about Lisa's dream, especially since I told Lisa that my own dream was truly disturbing..... a dream in which was being attacked by cicadas. Something Mattie would have thought was hysterical. 

I spent a good portion of my day today at Georgetown University Hospital. I had a meeting with the philanthropy department and then later in the day I went back and visited some friends in the hospital who needed a friendly face and some support. One of the units I visited was the post surgical recovery unit and I have to say I was so impressed with the nursing staff there. The nurses were so efficient, friendly, and kind. This kind of attention and concern in my opinion can help with recovery.  

I am always in amazement when I talk with people sometimes who do not understand the importance of psychosocial care and support in medical care! My one conclusion is that these individuals have never been sick and in a hospital themselves, because anyone who has spent even one night in a hospital understands immediately when I say that quality care must include psychosocial care. It can't be mutually exclusive from medical care. How someone talks to you, listens to you, includes you in the management of your care, tries to make sure you are comfortable, and understands your pain, concerns, and feelings as it relates to your health concerns can influence how you feel about the direction of your health care and the confidence you have in who is overseeing it. I would say that these factors also influence.... how compliant you are with the medical care!!!!

While at Georgetown tonight, I of course couldn't help but visit what I call "Mattie's sign." This sign greets all visitors to the pediatric unit of the hospital. I can remember the "moment" it was created. Jenny and Jessie, Mattie's art therapists, created it with him in clinic. Jenny and Jessie designed this fun sign for the floor to let people know this was a pediatrics unit. But they also wanted children to participate in its design. So they asked Mattie to add to it and his version of adding to it was to put his footprint on it. So that red footprint in the upper right hand corner is Mattie's foot! I know most people do not know this, but I certainly know it when I pass this sign! Which is why this SIGN MEANS SO MUCH TO ME!

Wednesday, January 28, 2015

Wednesday, January 28, 2015

Tonight's picture was taken in February of 2009, on Valentine's Day. It was our last Valentine's Day with Mattie. Of course I did not know that at the time, and fortunately ignorance is bliss. Nonetheless despite my lack of knowledge about when he was going to die, I was bright enough to know that every minute with Mattie should be appreciated. I shared that philosophy even before Mattie developed cancer! I did have professional interests and obligations, but Mattie always came first and thankfully he did because we only got seven years together. On Valentine's Day, Mattie worked very hard with the help of his art therapists to surprise me with all sorts of hand made gifts. I still have all of these gifts and will remember this day as if it were yesterday. Mattie and I always made hand crafted Valentine's for his friends and teachers and I wanted to post a photo of that tonight on the blog but I can't seem to find any of these photos! Which of course is very upsetting to me. I know we did all these crafts, I just can't find the visuals to illustrate my memories. What triggers Valentine's day? The email from my friend in cancer today!


Quote of the day: I remembered every moment between us, and every moment felt more precious as time passed. ~ Shannon A. Thompson

I received an email this morning from my friend in cancer. She is involved in promoting a rally for Childhood Cancer at the National Institutes of Health (NIH) and she sent me a link about creating a Valentine's Hang Tag. 

This Childhood Cancer Awareness rally will be held at NIH on February 14, 2015. I was told that a Valentine's theme will include a red rose display and 50 red roses handed out to people. There will be an opportunity to honor Mattie on a custom made festive hang tag attached to the 50 roses to be handed out. The design will include 4 panels (two folded hearts). On the front cover side will be a photo of Mattie and the text "Forever in our hearts." Inside will be some childhood cancer facts. The back panel will include a word cloud design with 15-25 words describing Mattie, as well as his first and last name, age, home state and diagnosis.

When I went on line today to fill out the application for the hang tag, I did not think it would be too difficult. But trying to list 25 adjectives to describe Mattie on the spot wasn't as easy as it sounds. Mainly because in my mind it is hard to describe Mattie with one word or 25 words for that matter in a list. I started my list and then what I quickly did is I went to the internet and looked up "adjectives to describe someone." Hundreds of lists came up. This helped me tremendously because I wanted to find the right words to capture Mattie's spirit. 

I then came up with a list and submitted it, but then realized I hadn't waited for Peter's list. Later in the morning Peter text messaged me his list. Though our lists had a lot of overlaps Peter had several words that described Mattie to a T and HAD TO BE added to the application. So I emailed my friend and I asked her...... "how do I edit my application once it has been submitted?" Fortunately she is technologically savvy and she fixed it for me!

So here is our list of 25 words to describe Mattie (some of the words may describe things Mattie actually liked -- such as nature and building with Legos):

brave

son

curious

precocious

builder

persevering

gentle

helpful

spirited

creative

thoughtful

nature

loyal

lovable

playful

humorous

logical

energetic

mature

musical

friend

charming

passionate

resourceful

adorable

Tuesday, January 27, 2015

Tuesday, January 27, 2015 -- Mattie died 281 weeks ago today.

Tonight's picture was taken in November of 2004. In a way it is hard to believe that our living room looked like this back then..... full of toys and ALL thing Mattie! I remember we did so many things on this little table from coloring books, writing, playing, creating, and having snacks. Of course Mattie also used the table for his trains! Trains were everywhere in our home..... on every floor and in every room! Trains of every kind and brand!


Quote of the day: People do not seem to realize that their opinion of the world is also a confession of character. ~  Ralph Waldo Emerson


Tonight I did not feel like writing. I have been spending a great deal of time writing and glued to a computer, for what seems like months. Peter was just watching me tonight and wondering.... how was I going to write tonight's blog especially since I was staring at the computer screen? Yet in moments like this when I draw a blank and really do not feel like sharing aspects of my day or feelings, I turn to Mattie. 

Around our home are constant reminders of Mattie. One of which sits right next to me on the couch.... a Lego model of the Taj Mahal. Peter picked this Lego kit up for Mattie at the store and when he brought it back home for Mattie, I think we were both shocked. Mainly because this structure is comprised of over 5500 Lego bricks. It is huge and a major production to put together. This would be hard for a seven year old who was healthy, but most definitely it was for one who was battling cancer. Yet Legos was our whole family's form of therapy. It kept us focused, engaged, and after we built something together we felt like we accomplished something positive and had a lovely creation to admire that brightened up our depressing space. Legos came with us everywhere, even to the Hospital! During Mattie's 14 month battle we assembled every Lego kit possible! He was prolific and in a way Legos enabled him to engage with the world around him. It was hard for Mattie to talk with others in his life as he got sicker and sicker. Yet Legos was a safe thing to unite over and as people entered into his hospital room, if they wanted to have a rapport with him, they knew they needed to take an interest in his Lego creations!

Despite the fact that Mattie has been gone from our lives for five years, several of his Lego creations are still assembled in our home and are on display. They still exist because Legos were that important in his life. They all have a story associated with them and when we see them, they remind us that indeed there once was a special child who lived within our home and whose spirit is still here and with us. 

Monday, January 26, 2015

Monday, January 26, 2015

Tonight's picture was taken in February of 2004. Mattie was about two years old and when we had snow, rest assured we were out in it! Mattie was intrigued by the white stuff and loved to go out and play in it, build in it, and just be a part of it. I did not like the cold or being out in the snow, but I tolerated it with Mattie's insistence. Mattie was big on making snowmen and tunnels and as you can see in this photo, Mattie was outside and all business trying to assess what we were going to do that day on our deck. 





Quote of the day: Remember that the happiest people are not those getting more, but those giving more. ~  H. Jackson Brown, Jr.

Peter was scheduled to travel to Nashville today, but it never happened. Given the blizzard in the Northeast, his flight was cancelled. Fortunately so, otherwise he would have been stranded tonight unable to get home! I have had a full day working in front of a computer, so I am sharing a fun photo instead tonight. 

This evening Peter went outside on our deck and came back inside with this in his hand..... a snowball! If Mattie were here, he would have gotten a huge chuckle out of this. Actually I am quite sure if Mattie were alive he would have been right along side Peter in the snow tonight! 

Sunday, January 25, 2015

Sunday, January 25, 2015

Tonight's picture was taken on September of 2008. It is one of my favorite photos of Mattie. My friend Susan came to visit us and brought Mattie this archaeological  kit, in which Mattie had to dig through a block of clay to find model dinosaur bones. Once he found all the bones he then had to assemble them to create the 3 dimensional dinosaur you see before you. It was quite a project in which Mattie was down on the floor, sitting on a bed sheet with goggles on and clay everywhere. He had a wonderful time. But after it was over, he was tired, peaceful, yet satisfied with his accomplishment. 

Quote of the day: There is only one thing worse of speaking ill of the dead - and that is not speaking of the dead at all. ~ Anonymous

My friend Charlie sent me a link to an organization based in Pacific Palisades, California, entitled, Grief Haven. The founder of the organization lost her only child to cancer. However, when Charlie sent me the link, she wanted me to know about a grief pin they were featuring on their site (http://www.griefhaven.org/order-pin.shtml). We have all heard about awareness ribbons and pins, but what is a grief pin? Well a grief pin in a way is similar to an awareness pin.... it is bringing awareness not to a particular disease but to death and loss itself. 

Grief Haven feels that we have NO SIGNS and SYMBOLS in our culture to acknowledge that someone around us is grieving. If someone walks passed us, how do they know we are going through a hard time? In the "old days" people used to wear black for extended periods of time. But not today. I remember as a child, when I went to Italy to visit my father's relatives, I can recall MANY of my cousins wearing black. I found it odd, since people in the US did not do this, so I asked my grandmother WHY?? She explained to me that was part of the culture, people wore black for long periods of time, YEARS in some cases after a family member died!!!  

We clearly know if someone is wearing for example a pink ribbon, they are supporting breast cancer, and a red ribbon, they are supporting heart disease but there are no ribbons and no symbols for grief. Mainly because we are supposed to bottle this feeling up and keep it in check.  

When you go to Grief Haven's website, there is a disclaimer at the bottom of the site that says....."The Psychiatric Diagnostic Statistical Manual states that losing a child is a catastrophic stressor unlike any other." It is an interesting disclaimer and one I know certainly would be corroborated in the research literature. 

The website explains that this grief pin's symbols were carefully put together. Grief Haven's foundation logo is an upside-down heart, which represents a heart in grief; the diamond shape is hope; and the scrolls are ancient symbols of love. To represent grief, we wear the heart upside-down. However, Grief Haven feels that over time, when we are ready, with hope and love, we will turn the heart right-side up one day.

When Charlie initially sent me the photo of this pin and the information about it, I looked at it and then saved it for another day. My initial reaction wasn't positive. However, the notion of the pin remained in my mind several days later. So I kept re-reading about the pin and then finally decided to order two pins to see what they actually looked it. When I received the pins yesterday and I read the material that came with it, I actually liked it much more than what I saw on the website. The pin is small, delicate, and goes on a lapel, like my Mattie awareness pin. I am wearing this heart pin upside down because in my mind I will always be grieving. To me that is a life-long process. Unlike the intention of the pin. I do not think there could possibly be enough love and hope out there for me to eventually turn this heart right side up. In addition, I am not wearing the pin as a symbol to others that I am grieving (which is the intention of the pin!), but I am wearing the pin as a symbol of the fact that I lost a very important person in my life. While on one part of my coat I wear an orange awareness ribbon that symbolizes Mattie's legacy and future, and now on the other side of my coat represents the loss of a boy and our lives that died on September 8, 2009.  These are my symbols, symbols which are important and mean something to me.