Saturday, October 18, 2014

Saturday, 18, 2014

Tonight's picture was taken in October of 2006. Mattie was at a fall festival and as you can see in a moon bounce and jumping around. This was another thing that Mattie did not naturally gravitate to. Moon bounces can be intimidating places for some children because they are loud, chaotic, and once inside kids are falling all over each other. These were things Mattie did not care for. But over time we found a way around all of them so Mattie could enjoy the experience! 


Quote of the day: Don't judge each day by the harvest you reap but by the seeds that you plant. ~ Robert Louis Stevenson

Peter and I spent the day working on a presentation for next week's conference in Toronto. Many of the presentations at the conference are SHORT! I have found the shorter a presentation is the HARDER it is to deliver. Mainly because it is very challenging to deliver anything of substance, and I feel our story is of great substance. So the pressure is on. One of the highlights of my day was receiving this lovely lake photo from my friend Mary Ann. She went for a walk, and while on her journey she sent me photos and some video clips. She wanted me to know she was thinking of me. Also that there were scenes along her trip today that Mattie would have also appreciated.... such as a woolly bear caterpillar and a house fully decorated for Halloween. Mattie would have most definitely enjoyed these sightings!

As promised, I uploaded some of the power point slides below that we have been working on for one of our presentations next week. The presentation is to address the Quality of Life for Mattie and us from treatment to now and how it influenced our decision to advocate for a national psychosocial standard of care for childhood cancer. 

Of course it would be important to understand what Quality of Life even means. That isn't so easy to define per se or even measure. But in a nut shell quality of life is a concept made up of several dimensions, including an individual's physical functioning, psychological state, social functioning, and physical discomfort. 

We decided to have a simple slide depicting Mattie as a healthy child. We wanted the audience to know that he was born healthy and lived an active life up until the age of 6. This included going to school, having friends, and doing all the things typically developing children get to do. Which means that we as parents also experienced those things right along side him! Therefore our quality of life (both physically and psychologically) were high. For the purpose of this presentation, I am NOT going to talk about Mattie's previous issues with sensory integration, speech delays, or other issues. We do not have time to address these and in comparison to cancer they pale. However, if someone were to do a complete perspective of our quality of life though, I do feel this would be an important factor to take into account because we had already gone through quite a process with Mattie already even before entering the world of cancer. 

This slide captures Mattie's quality of life. To me the photos say it all! Exhaustion (top left), depression (top middle), pain (top right), sadness (bottom left), and isolation (bottom right). 

This slide captures what life looked like for Peter and I while in the hospital and now. The top left photo was around August 5th, when we learned Mattie's cancer metastasized. A day neither one of us will forget. The staff were entertaining Mattie in the clinic while we talked to his doctor. We had just come back from that discussion and you can see Mattie was staring at us to figure out what was going on. Meanwhile I felt like someone had just run me over with a car. The photo in the middle was taken on October 20, 2008, the day of Mattie's first limb salvaging surgery. It was some ungodly hour of the morning and Peter and I were very scared as we were trying to keep it together to support Mattie. The top right photo was taken on November 12, after Mattie's second limb salvaging surgery. This was a horror show to see and manage. The pain management went very poorly post surgery and Peter and I did a great deal of screaming for days until Mattie was out of agony. The other three photos capture our life without Mattie. The balloon release occurred at Mattie's funeral, the memorial tree is at Mattie's school, and the memorial stone is at Georgetown University Hospital. Needless to say, the point of this slide is to alert our audience that Mattie may have died but our quality of life has NOT returned to normal. The cancer maybe over, but the battle continues. 

This slide highlights the essential nature of psychosocial support!!! When Mattie had access to this support, he was happier. In our case, the majority of this direct support was provided by his child life specialist and art therapists. I have no idea where we would have been without these women. They enhanced our quality of life dramatically and to them we will be forever grateful. Which is why we are committed to supporting the Mattie Miracle Child Life Program Fund at Georgetown University Hospital in Mattie's memory.  

Friday, October 17, 2014

Friday, October 17, 2014

Tonight's picture was taken in October of 2006. We took Mattie to the Walkersville Railroad in Maryland. We had a lovely train trip along the countryside and saw cows and wonderful vegetation. Mattie and Peter enjoyed the adventure of being on the outdoor train car for a while until it got too chilly and then they came inside and joined me. One of the train cars had a potbelly stove, which was the train car I parked myself in because to me it was a cold and damp day! As you can see NO other passengers were outside with Peter and Mattie!!! 


Quote of the day: I am hopelessly in love with a memory. An echo from another time, another place. ~ Michel Foucault


As I tried to write tonight's blog, it was a true comedy show. I am just tired and words are not coming to me. Peter got a kick out of watching me get distracted, laughing about something that I was attempting to write, and then finally tried to redirect me by taking me outside on the deck. As we went outside here was the sight Peter showed me. 

A lovely spider who spun a web in our outdoor light. That doesn't do much for me, but Mattie would have LOVED this big time. Which is why we photographed it. I will never forget how Mattie had a toy tarantula that was battery powered that he would send down the hallway of the hospital, especially at nighttime. This thing made noise, its eyes would light up and it was just creepy. Nurses knew it was Mattie and many of them appreciated his sense of humor, his desire to get their attention, and sometimes he even attached notes to them on the spider. Funny how this spider web can take me right back in time. 

Thursday, October 16, 2014

Thursday, October 16, 2014

Tonight's picture was taken in October of 2006. To me this captured Mattie's eclectic look! I most likely had asked Mattie to get dressed for the day and he did not want to, so instead, he started putting clothes on top of his pajamas. Not what I had intended, but he was taking my request literally. Of course I can also see Lego tracks on the right hand side of this photo that Mattie had put together. Legos were always a part of our lives, whether Mattie was healthy or battling cancer. They just colored our world and our living room. After Mattie died, we donated over 14,000 Lego blocks. Which should give you some idea for how many Legos we were living with. 


Quote of the day: All you need is love. But a little chocolate now and then doesn't hurt.  ~ Charles M. Schulz



This afternoon I went to Georgetown University Hospital to visit my newest friend who I just met this spring. Michelle is a graduate of Georgetown and I met her while giving a Mattie Miracle presentation on campus. When delivering the presentation, I could tell that Michelle understood cancer on a very personal level. I learned later that she lost a close friend to cancer while in college. In any case, we have been connected ever since. Unfortunately today I visited her at the hospital because she had an accident which impacted both of her legs. Being an active person, losing the ability to use your legs for several months is a very large adjustment. Of course having an emergency surgery and living in a hospital is also overwhelming. Not that I had any words of wisdom, I do know that having company and support can make a difference. 

The irony is I can go to Georgetown University Hospital and walk around, but don't ask me to park in the garage. There is something about that whole experience that brings back bad memories. Instead I literally park three blocks away, regardless of the weather, and walk onto the campus. I just can't deal with the parking nightmare, the tight garage, and the memories of wheeling Mattie through the floors of the garage to get him admitted. The stress of that garage will remain with me always. Sure the garage had an elevator, but it did not always work! So literally most of the time if I was lucky enough to even find a parking space, it was located at the bottom floor of the garage, then I had to wheel Mattie with ALL of our bags UP the ramps of the garage to get into the hospital. 


Before visiting Michelle, I visited the hospital gift shop because I wanted to bring her something to cheer her up. I know going into a hospital room empty handed isn't a good plan! So I tried to think about what I would want to see if stuck in a bed. The last time I was in this hospital's gift shop was with Mattie! I remember buying a cute stuffed kitty with Mattie in the gift shop! I still have this kitty. When I went into the shop today, I did not have Mattie with me and naturally it was a strange feeling. The first thing that caught my attention was this butterfly balloon. So I felt that was symbolic and got that, but then all around me was chocolate! That was NO surprise to me. Chocolate is my medicine of choice, but clearly I am not the only one. Mattie would have been most disappointed with the gift shop's decision...... I could just hear him squawking if he were with me!!! 

I am happy I visited Michelle and I got to meet her mom as well. One thing about myself that hasn't changed is I still love meeting people, learning about their lives, and hearing about their thoughts and feelings. Michelle's mom told me a special butterfly story about how they raised butterflies right before Michelle went to kindergarten. Then on the first day of kindergarten they went to school and had a butterfly release with the entire class. She was telling me this story because she thought the butterfly balloon was special and symbolic of her earlier beginnings. There is something special about butterflies for all of us and I am so happy that this balloon caught my eye today. 

Wednesday, October 15, 2014

Wednesday, October 15, 2014

Tonight's picture was taken in October of 2006. Mattie got this little pumpkin at his preschool and carved it himself. He was very proud of his accomplishment and we put a candle inside of it to display this cute jack o'lantern. With Mattie all these moments had a great deal of excitement attached to them. You can almost feel the excitement in his smile. 


Quote of the day: What I like about photographs is that they capture a moment that’s gone forever, impossible to reproduce. ~ Karl Lagerfeld



As I was preparing power point slides for the conference we are attending next week, I was going through months of photos. Photos from the time Mattie was diagnosed to when he died. Why? Because the nature of our presentation is to discuss the quality of Mattie's life and our life, pre-cancer to his death. It is through understanding our quality of life or lack there of, that one will see what inspired us to advocate and have a vision to develop a national standard for psychosocial care. Certainly Peter and I will talk about Mattie's quality of life as well as discuss our own, but to me photos have a way of capturing the essence of what is being conveyed and doing it justice in a way that remains very memorable! I can verbally state that Mattie was sad, depressed, or exhausted to an audience! But a photo that illustrates this leaves quite an impression. In fact, once I finish the slides, I may upload them to the blog so you can understand what I am talking about! 


In any case, one of the slides in our presentation discusses the quality of life Peter and I had in the hospital. I created a photo collage on this slide and one of the photos presented is this one! You maybe asking yourself, what is this? A field with Canadian Geese! So what does this have to do with cancer and Mattie's care, much less our quality of life??? Well actually it has a lot to do with it. On occasion, Mattie would get a room like this that had a window that overlooked the field. This was the GOOD view. Some of the other rooms had windows that literally looked out onto a brick wall! Totally depressing. However, in many ways this field view was equally depressing to me. It was depressing because while we were trapped inside watching Mattie undergoing painful treatments and other horrors, I could see college students outside on the field practicing and playing sports. They were living and healthy!!! It was very frustrating to know I couldn't control Mattie's disease or our life. It showed me how different my world was, and I did not like it. This view brought me great sadness and showed me what I was missing and it was a constant reminder of our differences. All of this impacted my quality of life in a subtle way but it was pervasive as it clouded my mood and outlook. I needed the window open to get natural sunlight/daylight into the room, but Mattie really did not want the curtain open. He tolerated my needs, but you can see why he wanted to shut out the world. When you feel different and are different, sometimes you need to protect yourself from further hurt. 

Tuesday, October 14, 2014

Tuesday, October 14, 2014 -- Mattie died 266 weeks ago today.

Tonight's picture was taken in October of 2006. Mattie was standing in front of a corn maze at one of the fall festivals we took him to. What I love about this photo was Mattie's expression. His facial expression reminds me of a sunflower turning toward the sun! He was beaming with a smile, just enjoying the moment and in turn so did we. 


Quote of the day: However many years she lived, Mary always felt that 'she should never forget that first morning when her garden began to grow.' ~ Frances Hodgson Burnett


Burnett's book, The Secret Garden, has always been magical to me. I think depending upon what age you read this book, you probably take different joys and meanings from it! As a child, you most certainly take sheer delight in the imagery of the restoration of the garden and the fact that there is a secret that the children are keeping from the adults. As an adult reader however, the beauty of the garden is probably a bit more complex. What the garden may symbolize is a chance at life, at a renewal of spirit, at a re-connection with another human being and the development of a friendship, and the chance to find new meaning perhaps in your life when everything else around you may seem confusing or dead. 

I had the opportunity to spend a good portion of my day away from the computer, which was quite special. I took all the work I had to process through to our local cafe and sat there for hours. In fact, at lunch time, Peter came over from work and had lunch with me. Which was a highlight. That is how long I was sitting in one place. After I had lunch, I migrated back home and to my dismay, I found that in my own secret garden one of our rose bushes had blown over and it and its dirt was all over the place. At first I was quite upset. But in a way it turned out to be a blessing. I spent over an hour outside with ALL my plants. I wouldn't have done that today if the bush hadn't blown over. What I noticed was spending time outside made me feel better. Which of course is no surprise and it is why I detest the change in season that is approaching SO MUCH! Today the humidity was back and though others were most likely not happy around me, I was thrilled and so were my plants, who seem to thrive in the heat! 

I have found that being ill for the past several weeks and under intense stress has caused me to try to re-evaluate what I am pushing myself to do this week. Needless to say my green friends were the perfect calling for me today after spending several days again by the computer.

Monday, October 13, 2014

Monday, October 13, 2014

Tonight's picture was taken in October of 2006. I happen to love this photo Peter took of Mattie and me with this wonderfully whitish pumpkin. This thing was huge, but the true gift of the photo was Mattie's adorable smile and how much he was enjoying the Fall Festival. 


Quote of the day: Rapid change, accommodating it can be one of the great human capacities. But living through it can be the stuff of stress and often suffering. ~ Ron Suskind

In the midst of another grey and rainy Washington, DC day, our Butterfly Ginger Lily is blooming!!! This plant has been an incredible producer and I am so happy we brought it home from the Outer Banks of North Carolina in June. I will never forget the man who told us about it. When Peter and I visited the Elizabethan Gardens on Roanoke Island of the Outer Banks, we met one of the grounds keepers of the Gardens. I got to talking with him and he told me that working in the Gardens was special for him ever since he lost his grandmother. In a way connecting with nature helps him stay connected to her. He was talking my language! As we were talking he educated Peter and I about the Butterfly Ginger Lilies that he had planted and how special these plants are! He told me that when they blossom I was going to absolutely love their fragrance because they are intoxicating! So before we left the gardens that day we went to the gift shop and bought a small plant to take home. Needless to say since June, this small plant has grown to my size and has been producing incredible flowers that to me smell like jasmine or gardenias. Depending on the moment you capture them. Either case, they are very special and smell nothing like a lily!!!! Seeing these flowers are a wonderful gift to receive on a grey Fall day. 

For the past 48 hours I have been glued to a computer and at the same time doing a test at home for my kidney stones. So it has been quite the process. I figured since I was going to be home attached to the computer, this would be the perfect time to get this test over with for my nephrologist. All I can say is that in three days this book chapter will be turned in and this will conclude book chapters for me for a while. I have been at it for five months now, so this will be a real reprieve!

Sunday, October 12, 2014

Sunday, October 12, 2014

Tonight's picture was taken in October of 2006. Mattie was at Butler's Orchard picking his pumpkins from the pumpkin patch. He and Peter got their wheel barrow and they were on a mission to find just the right pumpkins for carving and displaying! Mattie loved the process and the whole adventure of taking a hayride out to the patch and then literally picking pumpkins from the vine. 


Quote of the day: If you smile when no one else is around, you really mean it. ~ Andy Rooney 


Peter and I were going to spend the day on preparing our conference presentations for Canada, but then I learned I literally had three days left to submit the chapter that I have been writing. Needless to say my stress level went up by 20, and Peter had to step in and help me manage this project. We spent the day going through the chapter I wrote so far and worked on finalizing the rest of it. It was a full day for both of us, but it is well on its way and hopefully in the next few days, I can put in end to chapter writing for a while! I have been doing this since June and I need a break, because it requires a level of mental and emotional discipline that I don't have right now. 

As I checked my email today, my friend Charlie sent me a wonderful email entitled, 1000 cranes, 1000 strangers! I included the link below. I love origami  cranes, because they remind me of the cranes our friend Junko and her mom created for Mattie while he was battling cancer. These cranes still hang today in Mattie's bedroom. 

I love stories in which people bring joy and happiness to others. In a world in which there is so much sadness all around us, I think we need to promote more moments like these! The 1000 crane story and video brings a smile to my face. I hope you find it uplifting too.  
1000 Cranes, 1000 Strangers:
http://www.karmatube.org/videos.php?id=4657