Saturday, August 13, 2016

Saturday, August 13, 2016

Tonight's picture was taken on August 22, 2009. Almost two weeks before Mattie died. Mattie was dealing with a great deal of pain and yet look at his excitement as he just lost another tooth. He put his tooth in his tooth fairy box and eagerly awaited what he would find in the morning. I bought that tooth fairy box with Mattie in Florida when he was well. By that point, he had lost one tooth already, and I figured he would love the box as more teeth would be popping out. Most kids want money from the tooth fairy. Not Mattie. With each tooth that came out, Mattie requested something different. So different that we had to write a note and leave it for the fairy with his tooth. Requests ranged from hot wheel cars to even a necklace made out of dry pasta! 


Quote of the day: Yes, I have doubted. I have wandered off the path, but I always return. It is intuitive, an intrinsic, built-in sense of direction. I seem always to find my way home. ~ Helen Hayes


Though we haven't received our rescue dog, Sunny, yet, I feel the need to get things in place for his arrival. Which means having a vet and place to board him when we go away. I thought we were all set vet wise, but last week our vet contacted us to let us know she is leaving the practice she is a part of in DC. We were saddened to hear this since she cared for Patches for many years, and was even with us when we put her to sleep. A very sad day indeed. I have asked her for referrals to other vets and also for boarding ideas. 


In any case, today, Peter and I visited the first boarding facility on my list. This facility isn't new to me, since prior to having our DC vet, we used to go to this facility in Virginia to board Patches. However, we never saw the dog end of this boarding equation until today. We received a tour today and frankly the woman who toured us around SHOULDN'T be touring anyone. She was a very bad representative of the facility. A facility which was been around for decades. Nonetheless, I wouldn't board a pigeon there much less a dog. The first set of kennels at the facility looked a lot like this photo. Though I admit to downloading this photo from google images and it isn't of the actual facility we saw today. To me the kennel looked like a jail and if that wasn't bad enough, then we found they were sand blasting something in that same room. Literally there was drilling noise and dust everywhere. So much so that the woman giving us the tour started coughing and did not want to be in the room. I really wanted to ask her how she thought the dogs who were caged there must have felt. But I didn't go there with her, I just knew NO WAY would I put a dog there. 

She then toured us through their penthouse kennel for dogs. This was clearly much better, it looked cleaner, happier, and full of sunlight, but boarding in this area is close to $100 a night. Truly amazing to me, but the more researching I am doing the more I notice this isn't that off base. It is getting closer to the going rate. 

Later today while home, we had a visit from a female ruby throated hummingbird. Again I downloaded this photo from the internet to give you an idea of how small a bird this is! We refilled our hummingbird feeder and hope to get more visits now! 

Friday, August 12, 2016

Friday, August 12, 2016

Tonight's picture was taken on August 9, 2009. You maybe asking yourself.... where was this photo taken? It was taken inside the Lego store within our local mall. Mattie's child life specialist, Linda, knew how much Mattie LOVED Legos. She also knew that Mattie was too sick to apply for a Make a Wish gift. So instead, she tried to plan a very special outing for him and a close friend. That evening, after the store closed, Mattie and his friend were invited in to work with two master Lego builders. Mattie had the opportunity to select whatever kit was in the store and build it. However, by that point in time, Mattie had built about every kit in the store, since Legos were positive diversions for Mattie within the hospital. Therefore instead of building a pre-formed kit, Mattie and the Master builders allowed Mattie's imagination to take over. Mattie decided he wanted to build a NYC taxi. So that was indeed what they did. They built it from scratch without following a plan, and that taxi sits in our living room even today. I am quite certain that Mattie wanted to build a taxi because of his several trips to NYC to visit Memorial Sloan Kettering for experimental treatment. 


Quote of the day: It's not necessarily the size of the dog in the fight - it's the size of the fight in the dog.  ~ Dwight D. Eisenhower

On June 1, Peter and I participated in a 90 minute webinar hosted by the National Child Traumatic Stress Network. I have to admit that webinars are NOT my favorite thing to do. Mainly because you are engaging with a computer, you can't see who you are talking to and for the most part there isn't time to hear and address participant questions. So it is a very passive way of sharing information from my perspective, despite the fact that this is definitely a popular venue now. I spent a great deal of time on creating our slides because I wanted to try to bring the topic of medical traumatic stress alive from a parent's perspective. This is a topic we are very familiar with given that Mattie developed medical traumatic stress about four months into his cancer treatment. Though our society likes to focus SOLELY on the medicine, psychological issues do arise after a cancer diagnosis and unless managed, they greatly impact medical treatment, adherence to treatment, and the overall outcome. 

I realize the link below takes you to a 90 minute presentation, but if you fast forward to minute 53, you will be able to hear Peter and me. I am very glad this was captured on-line and we can share our perspective with others electronically. 

Helping a Family with Traumatic Stress when a Child has Cancer......

Watch on YouTube HERE

Thursday, August 11, 2016

Thursday, August 11, 2016

This photo was literally taken seven years ago on August 11, 2009. By this point we all knew that Mattie's cancer was terminal. I did not share this information with Mattie, but ironically I don't think I had to! He seemed to understand this intuitively. Even before the scans were done which showed that the cancer metastasized. What strikes me about this photo was Mattie's smile. Despite being in intense pain, NOT EATING for days, and not consuming fluids (only through IV), Mattie could still smile. Mattie could still play and wanted to engage with Peter and me. To me this is the sign of a very special person. 


Quote of the day: Patience is the companion of wisdom. ~ St. Augustine

Each morning when I wake up, I have an instant companion. Indie can't wait to see me and doesn't really want food or to play. Her main objective is for affection. I have never had such an affectionate cat who wants to be petted and loved. To me this is more dog like, than cat like. I was by our home phone this morning, and guess who jumped up on the piano to be right near more. Of course while there, she had to explore. Like our former cat Patches, Indie is also graceful and gingerly walks around things without damaging anything. 

This was Indie at lunch time. At lunch, I take a break and sit on the couch, and of course wherever I am, so is Indie! 



















When Mattie came into my life, I migrated away from talking to people on the phone. Mostly because Mattie really wanted my undivided attention and he found it disrupting to our daily routine when I would have lengthy conversations. This was a major adjustment for me at first, because I used to have many phone calls a week. Of course when Mattie developed cancer, the phone really became off limits to me. Mattie hated hearing it ring, he found the sound of chatter overwhelming, and this became so severe that Mattie did not like Peter and I to talk to each other in the same room. Which is why toward the end of Mattie's life, Peter and I ONLY communicated through text messaging. This had devastating impacts on us individually but also on our marriage, as we had to relearn to communicate with one another. 

I really feel for seven years that I have been conditioned to hate the telephone. It is a learned behavior that I still have today. I find being on the phone longer than 30 minutes overwhelming. I almost feel trapped in a way and truly do not enjoy this level of conversing anymore. Yet of course for the Foundation, I do have to make phone calls and some are lengthy. I have no choice. 

However, today I received a call out of the blue from a former student of mine. She and I haven't spoken to one another for ten years. I always gave as much attention as I could to my students when I was a professor, which maybe why so many of them related to me and would always tell me what a difference I made in their lives. Today's phone conversation however was over 90 minutes, and by the time it ended I was wiped out. As Peter tells me often...... I need to take care of myself. Rather than meeting everyone else's needs, desires, and time schedule. It is very true, which is why I really wanted pets in my life. I feel that Indie and hopefully Sunny will be a good balance to my days, where I can get away from working, listening to other people, and connect with something on my own terms. 

Wednesday, August 10, 2016

Wednesday, August 10, 2016

Tonight's picture was taken in August of 2008. Mattie had just begun chemotherapy and one of the diversions his art therapists got us engaged in was painting a clinic ceiling tile! Though his therapists had just gotten to know us, they quickly deduced that Mattie LOVED Scooby Doo. So they literally sketched a Scooby Doo scene on a tile and then over the course of a couple of weeks we painted it in. As you can see this was a photo of us with the tile. This tile still remains on the ceiling of Georgetown's outpatient clinic today. 


Quote of the day: The stupid neither forgive nor forget; the naive forgive and forget; the wise forgive, but do not forget. ~ Thomas Szasz

I would like to create a memorial brick for Mattie that will be placed by this Angel of Hope statue in Woburn, Massachusetts. Thanks to our cancer network, a friend gave us the contact person for the lady in charge of coordinating this beautiful statue. Her name is Maureen Webster. 

So before I left Boston, I emailed Maureen. Maureen immediately responded and took it upon herself to look at the Mattie Miracle website and the work that we do. Given how she responded I felt that she was speaking from the personal experience of losing a child. Not just a person working for the town of Woburn helping to process a request. 

I asked Maureen if she lost a child too, and she shared her nightmare with me. A nightmare that inspired her to get an Angel of Hope statue in her town. I totally appreciate her sentiments, but am truly in awe of her courage. Her story is VERY different from mine and I encourage you to visit her website about Nolan, her 22 year old son who died on a vacation trip to Mexico. The issues that Maureen highlights are so startling and impact hundreds of US tourists a year, that she took the tragedy of her son's death (or in a way murder) to start a non-profit called Mexico Vacation Awareness. 

In essence Nolan went to Mexico as a graduation present from college. While at a top resort in Cancun, he went swimming. However, he hit his head in the pool and lost consciousness. There wasn't a life guard on duty, so fellow guests rescued him and one was a trauma room nurse from Canada who tried to perform life saving measures on him. However, this nurse was physically restrained by the hotel's doctor and was prevented from intervening. After Nolan's death the nurse contacted Maureen and recounted what happened, as did many other guests who reported wrong doing on behalf of the hotel. When the paramedics showed up, they did not try to resuscitate Nolan. Instead they threw a blanket over his head and pronounced him dead. No one from the hotel ever contacted the family! If that is not bad enough, they left Nolan's dead body by the side of the pool for four hours. The story is actually gruesome and I can only imagine the pain of hearing this news from witnesses. Knowing that from their perspective Nolan would be alive today, if the proper interventions were performed. 

Nolan's story is horrific enough, but there are countless others of loved ones being killed because of corrupt police or negligence on the part of hotels with poor safety and security measures. I found Maureen's website so upsetting because unlike cancer, it seems to me that such accidents could be prevented. She is advocating that the US government provide better warnings to tourists going to Mexico. 

http://mexicovacationawareness.com/

Before we left Massachusetts, we visited the Angel of Hope statue and placed this hand made stone right by the angel. The stone says, "Mattie, love you to the Moon & Back." 

Tuesday, August 9, 2016

Tuesday, August 9, 2016 -- Mattie died 360 weeks ago today. 

Tonight's picture was taken in June of 2004. In Peter's parents living room, you can see the stack of vehicles in front of Mattie. The more the better! With Mattie, I learned that children do gravitate to the things that interest them. You can expose them to a lot of different things, but to some extent what they want to play with is hard wired within them. So despite not know much about vehicles, I quickly got up to speed because this greatly interested Mattie.  


Quote of the day: Some of the finest moral intuitions come to quite humble people. The visiting of lofty ideas doesn't depend on formal schooling. ~ Alfred North Whitehead

We flew back from Boston today. The weather in Boston has been beautiful. Clear blue skies and very little humidity! A real change from DC. While in the air, we saw SO MUCH air traffic around us. It was actually daunting. One jet literally flew right under us and we could see it distinctly! 

It took us about 40 minutes to land. Which is unusual! Especially since the flight from Boston to DC is around 65 minutes altogether. So this flight was much longer than normal, and of course that concerned me. However, look what we were flying into...... it looked like pea soup. You can hardly see National Cathedral. 

We flew passed the Washington Monument and you can see how hazy and gray it was today. 

Since I found out that our vet extended her hours until 8pm today, we dashed in the car and picked up Indie a day ahead of schedule. They said she wasn't vocal and ate very little while we were gone. When she got home, she headed right underneath the bed. But she did not last long there as she clearly recognizes us and knows that she is home. 

Monday, August 8, 2016

Monday, August 8, 2016

Tonight's picture was taken in June of 2004. Mattie was outside playing on Peter's parents deck. With Mattie there were always cars and trucks around. He literally gravitated to anything that moved or had wheels. Some of the cars he played with belonged to Peter, which made them very intriguing! 



Quote of the day: What I spent, is gone; what I kept, I lost; but what I gave away will be mine forever. ~ Ethel Percy Andrus

Today we went to visit the Ipswich River Wildlife Sanctuary. The Sanctuary offers more than 12 miles of trails that invite you to explore the forests, meadows, and wetlands. A drumlin and esker, key landscape features, were formed by a glacier 15,000 years ago. Boulders stacked to create arches and a grotto setting, constructed in 1905, provide an adventurous walk along the Rockery Trail.

The beauty of our surroundings!

Turtles were everywhere, enjoying the summer sun. Mattie would have loved this sight!

Check out this cute frog!

Peter walking through the rockery! This was definitely a walk through that kids (and there are many of them..... as the sanctuary hosts a camp) enjoy! Actually kids of ALL ages, as I found it intriguing!

A scene Monet would have appreciated! Look at these wonderful water lilies. 

A water lily close up!

Clearly these chickadees are used to people and being fed. They were fluttering all around us and one even landed on Peter's hand.... looking for food. 

 A glorious and peaceful sight!

Turtles sitting on a log!

A metal whirligig, of birds! It captured the sunlight and breezes.

Meet Bok Bok the wild turkey. This turkey visits my in laws every morning and evening. I think he is getting so comfortable here, that now he comes to the deck door to check out what is going on inside. I am waiting for him to knock with his beak and request to come inside! In any case, he is a sight we have gotten used to for the last week, along with birds and hummingbird traffic! Something we will not be seeing when we return to DC tomorrow!

Sunday, August 7, 2016

Sunday, August 7, 2016

Tonight's picture was taken in June of 2004. We were in Boston and on Peter's parents deck, they set up a kiddie pool for Mattie. Peter literally put a chair into the pool and introduced Mattie to the water. I don't have many photos of the three of us together, but this was definitely one for our books.


Quote of the day: The best way to cheer yourself up is to try to cheer somebody else. ~ Mark Twain

We experienced SoWa today. SoWa which stands for South of Washington (street) and it is located in Boston. 

Previously known as a rundown warehouse district, SoWa Boston has since experienced a dramatic renaissance, blossoming into a world-renowned retail & artistic community, and drawing the interest of developers, restaurateurs, and cutting-edge businesses.

It doesn't take long to realize that SoWa Boston is not your typical big city retail destination. There are no mega-malls packed with name brands; no big corporate sponsors; and no cookie-cutter department stores. Instead it is a community of artisans, makers and entrepreneurs that believe in crafting quality, one-of-a-kind products and letting their creativity shine.

It was fun to interact with the artists who hand made their own jewelry and pottery and for the most part these individuals did not know how reasonably priced their items were!

In the afternoon we visited Revere Beach. Though I LOVE this photo, it MOST definitely doesn't look this way today. 

Revere Beach is located six miles north of downtown Boston. The beach is a natural mudflat with a wide sandy knoll along its three-mile length. From 1906 to 1975, Revere Beach contained a popular amusement park, that was considered by many to be Boston's Coney Island. During its hey-day in the 1920's, it was not unusual for 100,000 people to visit Revere Beach to swim, ride an amusement, or go to one of the famous dance halls that operated there for many years.

Each summer, the beach features the International Sand Sculpturing Festival.

The artists adhere to strict rules during the contest. Each sculptor is given 10 tons of sand and are assigned an 18’ x 18’ square exhibit area. Work by the artists is limited to 24 hours in total length, which is spread out over several days. Forms for molding components are allowed and must be removed prior to the artworks being rated by the judges. The sand sculptures are evaluated using four categories: (1) degree of difficulty, (2) originality and creativity, (3) quality of sculpting, and (4) overall visual impact. Thousands of dollars in prize money are offered each year, which garners some of the best artists in the nation to the festival.

Though I remember some of the titles of each piece, there are a few that I just can't recall. But this wonderful elephant and giraffe caught my attention! 

This piece was entitled, "Color's in my mind." It was one of my favorites because it required imagination and to understand what the artist was conveying! To indicate the colors on the palette, the sculptor carved out objects that represented the colors in his mind. So the apple symbolized red, the frog symbolized green, the police officer - blue, grapes - purple, etc.  

 This piece was entitled, "The Little Owl."

This was another favorite of mine. It is entitled, "Slice of Memory." What I love about it is the sculptor gives us actual slices through this person's brain. When you look inside these slices there are sand objects, which to me symbolize this person's memory. We all have visual pictures trapped inside our minds that provide us with memory. This sculptor was able to bring to life this complex human ability of memory and visually depict it for us in sand.

This piece is entitled, "Go with the flow." I love the woman in her bathing suit on the left leaning into the wave. It is simply a sculpture that seems to capture movement and the agility of the human body.

I do not remember what this piece was entitled, but I happen to love the bond it depicts between a girl and her horse. 

This last piece won second place and was entitled, "Together." Though you may not be able to see it, there is a caption above the astronaut on the right which reads..... we are alone. Which is how it must feel in space...... you are together with your fellow astronauts but totally alone and separated from earth.