Saturday, January 19, 2019

Saturday, January 19, 2019

Tonight's photo was taken in January of 2009. I know exactly where we were and why! That day, Mattie endured a VERY long bone scan. A scan that he had to do awake, and not sedated. The deal we made with Mattie was if he complied with the scan tech and sat still for the two hour long procedure, then we would all go out to lunch on the hospital's campus. There was a restaurant on campus that prepared Japanese food on a grill right in front of you. That whole process intrigued Mattie and believe it or not he loved cooked shrimp. This photo was taken at his special lunch, which included his art therapists and child life specialist. 

Quote of the day: One need not be a chamber to be haunted. ~ Emily Dickinson

I think Emily Dickinson's quote seems quite appropriate for Washington, DC. Why? Because the city is infested with rats. It's like a horror movie. It's rather ghoulish really. For us, seeing rats is a daily occurrence. There isn't a rat free day for us, and there hasn't been one for at least two years. Each time we walk Sunny, regardless of the season or time of day.... you see rats. Naturally I try to avoid them at all costs, but I am quite sure it's either Sunny's disposition or training that leads him directly to them. He has a strong prey drive for anything that scurries, with a heavy focus on rats and squirrels. So much so, that I really do not like walking Sunny after sun down. 

I love to go out for walks as does Sunny. But we get different things from our walks! Sunny is all about the sniffing, hunting, and chasing. See this trash can.... it is a typical DC occurrence where rats chew big holes right through the plastic. 

Also do you see this big hole? Another DC occurrence. This hole wasn't created by happenstance. It was created by a rat. There are holes like this ALL over the city. In parks, near homes, restaurants, you name it. 

Yesterday I went out for a walk with Sunny. It was day time. We were walking along just fine and then all of a sudden Sunny jumped into a bush, but his snout down a rat hole and pulled out a rat! I was disgusted for the rest of the walk and shared my displeasure with Sunny. 

Mind you it is damp, rainy, and cold out. But that doesn't stop the rats. When I first got Sunny, we were out walking and I happened to meet a man by the Potomac River who shared the story about his dog's death. I think he was so traumatized by it and felt guilty that he had to share the story with me. To prevent this from happening to someone else. His dog contracted Leptospirosis. Which is a bacterial infection that dogs can pick up from the urine of rats. He scared me so much that I talked to my vet about this and encouraged her to give Sunny a vaccination for this disease. Leptospirosis, if not caught early, kills dogs. Unfortunately this vaccine is not a standard of care, so unless someone told me about it, I wouldn't have known the risk. Well not as a new dog owner. I am thrilled Sunny gets vaccinated each year because with his proclivity for rats, he would be a sure target to get ill. 

Check out this video....Rat Problem out of Control in Dupont Circle:

http://www.fox5dc.com/news/208277201-video

Friday, January 18, 2019

Friday, January 18, 2019

Tonight's photo was taken in January of 2009.  The music volunteers at Georgetown University Hospital grew so fond of Mattie, that for Christmas of 2008, they gave him this incredible keyboard. Before Mattie was diagnosed, I had arranged for him to start piano lessons. That never happened unfortunately, but nonetheless, Mattie was trying to learn to play on his own. After Mattie died, we donated this key board to the hospital for other children to enjoy. 


Quote of the day: Either you run the day, or the day runs you. ~ Jim Rohn



Some days I look up at the clock and I wonder what happened to the day? Today was that kind of day. Not that I got any one thing accomplished. But with conference calls, emails, annual Walk preparations, and organizing the Foundation's presentation at a school next week.... and all I can say is I am done. Signing off!

Thursday, January 17, 2019

Thursday, January 17, 2019

Tonight's picture was taken in January of 2009. Mattie was home from the hospital and got a visit from our resident Jack Russell Terrier, JJ. JJ and Mattie were buddies and practically grew up together. Though it may look like Mattie was agile and could get around. He couldn't. Mattie couldn't walk, but found a way to move around if he was sitting on the floor. Of course, because Mattie couldn't really move and had tubes coming out his chest, he was anxious about being around JJ, who had a lot of energy. Mattie never felt this way before cancer. 


Quote of the day: Few childhood cancers are attributed to genetics or environmental factors. ~ Dr. Janine Vetsch

I came across an article today, entitled, What is to blame for childhood cancer? We often misunderstand the reality. The title alone caught my attention, because I know ALL TOO WELL that families of children with cancer know the reality and the non-cancer community believes the myths. Perhaps they believe the myths because it quells their fears and placates them into thinking.... this can't happen to my family. 

In any case, the study in question was conducted in South Wales. Dr. Vetsch decided to investigate the perceptions on the causes of childhood cancer with two different groups. One group was comprised of families who had a child diagnosed with cancer and the other group did not have a child diagnosed with cancer. 

She investigated the beliefs of more than 600 participants – parents and childhood cancer survivors – about the causes of childhood cancer, and compared them with beliefs of 510 members of the general population.
She found that more than seven out of 10 childhood cancer survivors and survivors' parents believed that chance or bad luck caused the child's cancer, so most parents and survivors seem to understand that there is nothing they could have done to prevent the cancer.

Members of the general community, that is, without a child with cancer, more frequently endorsed that genetics (75.3%) and environmental factors (65.3%) played a major role in childhood cancer, and less often attributed bad luck/chance to the diagnosis. These sorts of views can lead to stigma, and I can attest to hurtful comments that were directed to Peter and me. I absolutely agree with this researcher, that it is really important to increase community knowledge of childhood cancer causes in general, because perpetuating this myth serves no purpose, other than it being a misguided attempt at self protection for the well community.  

What is to blame for childhood cancer? We often misunderstand the reality:

https://medicalxpress.com/news/2019-01-blame-childhood-cancer-reality.html

Wednesday, January 16, 2019

Wednesday, January 16, 2019

Tonight's picture was taken in January of 2009. Hard to believe this was 10 years ago, as it seems just like yesterday. Mattie was home from the hospital and doing what he always loved... playing with boxes. In fact, he took a box we received and transformed it into a bicycle helmet. A sad commentary though, as after Mattie had his limb salvaging surgeries he was never able to walk to bicycle ride again. Yet this speaks to Mattie's spirit, because his physical limitations did not limit his creativity.   






Quote of the day: The secret of genius is to carry the spirit of the child into old age, which means never losing your enthusiasm. ~ Aldous Huxley


I am not sure if it is coincidental or what, but I happen to be reading a fiction book by Jodi Picoult called Leaving Time. What is described in the book, I feel like I experienced today. The book focuses on a story of a young girl who is desperately searching for her missing mom, who vanished under suspicious circumstances. In any case, the young girl goes to see a psychic in hopes she can help her. The psychic says the following..........

You ever hear the phone ring, and pick it up, and just get dead air? That could be a spirit, trying to tell you something. They're energy, so the easiest way for them to try to get your attention is by manipulating energy. Phone lines, computer glitches, turning lights on and off. 

I got into my car today, and the center console which houses the radio and GPS, wasn't working. It instead glowed blue. It did this for about thirty minutes and then it returned back to normal. Similarly I went to do laundry today and put my clothes in the machine. It was working just fine while loading the clothes, but then all of a sudden the console that lights up went completely dark. As if someone had plugging the electric chord in the back of the machine. The machine never turned back on again for the rest of the day. I have been doing laundry for decades in our complex and this has never happened to me before. How do I explain two very different, yet very unique electrical disturbances today? Well I suppose if I wanted to be scientific about it, I would look for the most logical and rational explanations for these anomalies. However, because Jodi Picoult's novel is floating around in my mind, and because I will always be a grieving mom, to me the connection is clear. Or at least how I wish to interpret it is clear and that is Mattie was communicating with me. 

In fact, I am quite certain shortly after he died, Mattie communicated with me through our front car seat. One evening, I got into the car and found the front passenger seat pushed all the way back, like I used to have it when Mattie was recovering from limb salvaging surgery. He had a huge cast on his leg and his leg needed to be propped up straight in the seat in front of him. Mind you I had not moved the seat like this before leaving the car. Peter was no where near the car and no one accessed the car until I returned to it. There was NO explanation AT ALL for this occurrence. I can't even see science explaining that. Second incident after Mattie died.... I was driving in the car with the radio off (it's interesting that the occurrences always happen in the car!!!). However, all of a sudden the radio magically went on by itself and was playing ABBA's Dancing Queen. The song Mattie identified with when participating in physical therapy. Again, how do you explain the radio turning on? Not only turning on but playing Mattie's song!? Like today, I interpreted those incidents as Mattie trying to tell me something. 

I am not sure what Mattie is telling me today. Perhaps he knows we are presenting at his school next week and with that he wants us to know that he is behind us in spirit. I must admit prior to losing Mattie, this spirit conversation would have been lost on me and I would have thought the young character in Picoult's book was absolutely desperate and not thinking clearly because of her grief. All plausible, because grief isn't logical! However, grief does make us more vulnerable and at the same time open to hearing and accepting alternative thinking. In any case, it leaves me with a positive feeling to think that Mattie was trying to reach out to me today. 

Tuesday, January 15, 2019

Tuesday, January 15, 2019 -- Mattie died 487 weeks ago today.

Tonight's picture was taken in January of 2008. it is hard to believe that six months after this photo was taken, Mattie was diagnosed with cancer. Doesn't he look like the picture of health? Like nothing was wrong with him. This was a typical weekend for us, regardless of the weather. We always took Mattie outside to interact with nature. Mind you this was not something I did much of prior to having Mattie. Mattie just responded positively to being outside, so it became something I grew accustomed doing, and still do today. 


Quote of the day: One of the saddest things in life, is the things one remembers. ~  Agatha Christie



Seems a very apropos quote tonight. I am not sure why I am working so hard on putting together the presentation we are giving at Mattie's school next week. Perhaps it is because this isn't a typical age group we talk to? Or the simple fact that many of the kids we will be interacting with are Mattie's classmates. Not sure which one! In any case, today I sat still for two hours and worked on a script for a role play. 

I figured a great way to engage the students in this 45 minute session will be to highlight some of the psychosocial issues associated with childhood cancer. Not just through slides, which can be boring, but by creating a scene for them, that hopefully will catch their attention. Overall, we will be doing role plays, showing some power point slides, will play a 4 minute Mattie Miracle video, will divide the classroom into two groups, so the groups can compete in a matching game as well as a group challenge. The matching game will be a fun way to learn about basic childhood cancer facts. With each answer a group gets correct, they will earn a bean bag. 

Finally, the group challenge will ask each team to present us a way for them to get involved in Mattie Miracle's work..... through hosting awareness and fundraising activities. The team which presents the best and most doable idea, will be able to stand closer to our corn hole board during the competition. Every May, Mattie Miracle's walk features a corn hole tournament. We are bringing a corn hole board into the classroom so at the end of the session, the two teams will compete, using the bean bags they earned. The team who wins the competition will get what else? CANDY!  

However, as it relates to tonight's quote, I would say it is hard to try to think about role plays. We have lived the feelings and thoughts expressed in them but for the most part..... to the kids we will be presenting to, they have no real appreciation for the devastation this disease causes to a child and a family. I will be curious to see what they can and are willing to absorb. Mind you have presented to two high school classes at Mattie's school previously and it wasn't a good experience. Actually I would say it was a frustrating experience. So I am going into this colloquium with level set expectations. 

Monday, January 14, 2019

Monday, January 14, 2019

Tonight's picture was taken in January of 2006. Mattie was sitting on a rocking duck. A duck that belonged to Peter when he was a child. I am not sure what Mattie loved more about the duck.... the fact that it rocked or that he knew this was a toy Peter had loved. 



Quote of the day: I’d rather be a failure at something I love than a success at something I hate. ~ George Burns


In typical DC fashion, the government and schools were closed today. Frankly any threat of snow causes panic in our region. I had the pleasure of walking Sunny and I can attest to the fact that the side walks were like ice skating rinks. Because of the ice, I landed up walking in the snow banks. So I felt like I got a work out as it isn't easy trudging through 7 inches of snow for close to 3 miles.

I would like to share the Mattie Miracle 10th Anniversary video with you. I have been working on it for two weeks. I can't tell you the journey I have been on to find the right song that plays in the background of the video. I wanted something that did not sound solemn (as we are celebrating the Foundation and its achievements), but I also felt a happy song wouldn't do either. Especially given the content we are highlighting and of course why the Foundation was created to begin with. 

Initially I created this video to show to teenagers, as we are presenting at Mattie's school on January 22. However, as I was developing this video, it dawned on me..... this video should have multiple purposes. It isn't just for this presentation, which is why the video evolved into our 10th anniversary video. The goal of this video was to explain our mission and highlight how we go about achieving it. I would say it does this well, and one thing I learned from our November 2018 - Bourbon & Bites Bash, and that is, not all of our supporters know what we do. Therefore, I think having access to this four minute video will help with our current supporters as well as making new Foundation friends. 
https://www.youtube.com/watch?v=l13RgECGmls

Sunday, January 13, 2019

Sunday, January 13, 2019

Tonight's picture was taken in January of 2005. I had wanted to do a holiday themed activity for Mattie's preschool class. When I mentioned this to Margaret, Mattie's teacher, she suggested I wait until January and then do gingerbread houses with the kids. Sounded good in theory, but I never made a gingerbread house before from scratch. So I had a steep learning curve, along with making royal icing, purchasing candy and so forth. I landed up making two houses for the classroom and the kids had a ball. In fact, all the classrooms at the school got to come in and participate. Mattie got to take the houses home with him, and you can see that made him happy. 


Quote of the day: Snowflakes are one of nature's most fragile things, but just look what they can do when they stick together. ~ Vista M. Kelly

It has been snowing in Washington, DC since yesterday. It is still coming down this evening. I am grateful that Peter took Sunny out yesterday and today. Sunny doesn't seem to mind the cold or the snow. Unlike me! 

Notice what Sunny was up to.... looking for squirrels! As if it was any routine day. 

The streets and sidewalks appear to be a mess around us, which will make for an interesting start to the work week. 

Peter tells me people were walking in the streets, because the sidewalks were a mess. 

Sunny was walking on a sidewalk. Or what used to be a sidewalk. 

I spent the entire weekend working on Mattie Miracle's 10th anniversary video. In addition, I am trying to brainstorm how to do our Foundation presentation at Mattie's school on January 22. Given this is not an age group I am comfortable working with, it makes the planning of this presentation difficult.