Saturday, October 6, 2018

Saturday, October 6, 2018

Tonight's picture was taken in October of 2006. Mattie was four years old and that weekend we took him to Walkersville, MD. There he rode on vintage 1920's passenger cars past a 100-year-old lime kiln and then out into the picturesque Maryland farm country.  Given that Mattie was enamored with trains, this was an activity to remember.


Quote of the day: When we recall the past, we usually find that it is the simplest things not the great occasions that in retrospect give off the greatest glow of happiness. ~ Bob Hope

Though we only live a couple blocks away from the Organization of American States, we have never gone into this building until tonight. This evening, the Georgetown Business School was hosting a reunion for Peter's class. The event was held in this beautiful building. 

When Peter was going to business school, I also was in graduate school. So I heard about his classmates, but for the most part never met them. In addition, though his classmates were the same age as Peter, many of them weren't married. Therefore, his classmates had a different social scene than us. Ironically, many of Peter's classmates actually married fellow classmates, and I can't tell you how many marriages I counted tonight. At least 8 that I can recall off hand. 

This is where the cocktail hour was served. It was a very lovely, almost Spanish style atrium. Filled with real trees. It was a magical setting. 

I typically don't like going to social events, especially with people I don't know. Mainly because the small talk drives me crazy..... What do you do? How many children do you have? So forth! But Peter encouraged me to come so that we could share Mattie Miracle with his classmates. That got me to think about the event in a whole new way, which actually worked out very well. 

The room was set up in different shades of purple. It was lovely and the purple roses on the table were simple but elegant. 

The roses were sitting on a velvety purple table linen. It was very inviting. 

We sat at a table of ten. Attendees were sat by class year. Initially during our first course, no one was sitting on my left. However, as we began eating our salad, a man came to sit next to me. He wasn't in Peter's graduating class, but decided to sit with us because there was no room for him at his own class table. I introduced myself to him and he assumed I was a graduate. I said no and that I was in a completely different field. So this intrigued him. When I told him about my education and background, he seemed pleased by this and wanted to share a problem he was having with someone he was working with. So this is how our conversation started out. We eventually moved into our Foundation work later in the evening. Needless to say, I got his business card and will be following up with him this week. It is my hope that from this evening, we will be able to introduce several new people to Mattie Miracle. 

After dinner was served, they had a buffet of desserts. 

A classmate of Peter's snapped a photo of us. The lighting in the room was simply awful! 

I tried to get Peter's class photo, but there were 60 of them in attendance at the event. This is the best I could do, while standing on a chair. Unfortunately Peter is on the far left and apparently I did not capture him in this photo. 

Yet getting these people on stage for this photo was like herding cats. It was Peter who organized this group photo because without leadership, this group was scattered all over the stage. 

Friday, October 5, 2018

Friday, October 5, 2018

Tonight's picture was taken in October of 2005. In my opinion this was classic Mattie. Don't ask me why, but Mattie loved to paint with his feet and hands. So I would transform our living room floor into an art's center. I taped down paper to the floor and Mattie went to town creating. We actually made the cover of several greeting cards this way. Now you would think after Mattie finished creating, that he would then be running all over our home with his painted feet! However, Mattie had an innate sense about him to keep things clean. Literally he would wait for me to carry him to the kitchen sink to wash his feet and wouldn't step off the paper until I was ready. 


Quote of the day: Mothers and their children are in a category all their own. There’s no bond so strong in the entire world. No love so instantaneous and forgiving. ~ Gail Tsukiyama


I was in the grocery store today, minding my own business. While at the check out counter, I could hear a dialogue between a woman and a store clerk at the cash register behind me. I wasn't purposefully listening, they were just talking loudly. So I couldn't help but overhear. The customer was buying wine. So the sales clerk asked to see this woman's ID. That sent the customer into a fit of chatter. She told the store clerk that she was flattered because she was 35 years old. The banter did not stop there, as the female clerk proceeded to tell the customer how young she looked. Which of course caused MORE gushing from her. This dialogue was noteworthy for this alone, but then it got better. 

The customer proceeded to tell the store clerk that she was a mother of three small children. She went on to say that she is strung out and is surprised to get a comment about how good she looks, considering how she felt. She then specifically said... 'I love my children but they drive me crazy!' Honestly this woman was lucky I was in my happy place at the moment, because on a bad day, it is plausible that I would have turned around and given her a reality check. While she is moaning about being tired raising three healthy children, there are countless women in a hospital around the country caring for a seriously ill child. A child who may not make it like Mattie. I am not sure she even gave thought to how her gushing comments could be perceived by others. Others who may not have children anymore. 

I do remember the days of raising a healthy child. Yes they may have been a long time ago, but I do recall the stresses associated with 24/7 child rearing. Motherhood is not for the meek by any stretch of the imagination. When I was raising Mattie (pre-cancer), I am sure there were times, I could have sounded like this mom (though I would never of had this conversation with a stranger!!). Now unfortunately I have lived on the other side of this equation and admit to being overly sensitive as it relates to moms and children. 

In a way, today's conversation brought me right back to the first few months after Mattie died. Going to the grocery store was painful, as I couldn't look at some aisles or the toy machines without thinking of Mattie. I even recall sales clerks asking me about my 'children,' while they were ringing up my items. I imagine they did this since I had a visible photo of Mattie in my wallet. Back then I honestly did not know how to answer their probing questions. Some days I said nothing and other days I let people have it. Yet now 9 years later, I would say I have better control over my anger, BUT........ there are times it does come flying out and when it does people definitely do not know how to handle me.  

Thursday, October 4, 2018

Thursday, October 4, 2018

Tonight's picture was taken in October of 2002. Mattie was six months old and the bedtime routine was a nightmare. Mattie did not like to sleep! We tried warm baths, music, rocking, no lights, lights, and the list went on. Mattie hated being on his back and I am not sure if you can see it, but he made fists and truly was fighting and wiggling to change positions. We learned early on to put the car seat in the crib with Mattie in it. As this propped Mattie up safely and he would sleep for small intervals that way. 


Quote of the day: To live is so startling it leaves little time for anything else. ~ Emily Dickinson

Peter retrieved Indie from the vet this morning. Indie was so excited to be home. She was checking out every corner of our home and demanding lots of attention. I am glad we could bring her home first, so she could get plenty of love, food, and peace. 

This afternoon, I went to pick up Sunny. No surprise, that I learned Sunny went on a starvation diet while we were away and even refused his treats. They tell me a small percentage of dogs are this way. Needless to say, as soon as Sunny got home, he devoured whatever I put in front of him. Before bringing him home, I took him for a long walk. As soon as I let him out of the car, he was practically racing through the first half of our walk. Thankfully by the time I got him back to the car, all his untapped energy was released and he was calmer. I got Sunny's routine and needs down to a science. As they told me at Dogtopia..... 'he misses you and will only take food from mom!' Unlike Dogtopia, I have the other problem. With me Sunny wants to eat ALL the time! Which is why I do not worry if he doesn't eat while we are away. 

I would say that Sunny is an emotional beast. As you can see in the photo above, he is sitting right behind me tonight as I write the blog. My velcro dog is back, and Peter's velcro cat is reporting for duty. 

Wednesday, October 3, 2018

Wednesday, October 3, 2018

Tonight's picture was taken in October of 2004. Peter snapped a photo of Mattie and me walking into a fall festival. Literally every weekend in the fall, we took Mattie to a different festival. The first year we did this, Mattie was cautious. He did not want to go on the slides or participate in many of the activities. Other than pumpkin picking. But with each year and more development behind him, he gained confidence and found these activities great fun, exciting, and of course this made us happy to see Mattie so engaged. 





Quote of the day: I am of the opinion that my life belongs to the community, and as long as I live, it is my privilege to do for it whatever I can. ~ George Bernard Shaw



Peter and I are now back in DC. I would say we had a very stressful and frustrating experience! We were invited to attend a problem solving skills training. This training is designed to teach mental health professionals an evidence based model that will assist parents of children with cancer. I want to make it clear that this training has nothing to do with our standards or Mattie Miracle's work. 

Basically a research team designed a model with the intention of mental health providers using it with parents whose children have cancer. The model is to provide problem solving skills to parents. The reasoning being that providing such skills will reduce anxiety, depression, and traumatic stress. The training has been open for the last three years to social workers, psychologists, nurses and doctors. This is the first time, two non-profits were invited to attend. Prior to attending, I made it clear to the researchers that I had issues with their model and that I couldn't see it working in a clinical setting. 

Here’s the problem. The model is quite linear and in opinion rigid. It is deemed to be supportive and not therapy! Yet keep in mind the training is given to therapists. Which doesn’t make sense for multiple reasons. First and foremost is that in a hospital setting parents aren’t the patients. So there is no reimbursement pathway for these professionals to provide care beyond the child. Second there is no time in a crisis for parents to focus on writing down their problems and solutions, which is encouraged in the model! It isn’t the right setting for this, and I speak confidently on this having lived in a hospital for 14 months. Third, the researchers want clinicians to simply provide the model without incorporating their supportive care skills. It is unnatural to ask this of a trained mental health professional. 

Peter and I were honest with the researchers before attending this training given our hesitation to support their model. They thought seeing the training in person would alter our views. Unfortunately that is not what happened. Despite our best efforts to confront the researchers we got no where during the training sessions. This is the issue with designing a model in a research vacuum. It may work in a lab but it doesn’t take into account the stresses professionals are already balancing or the lack of time, energy and intense stress parents are living with inpatient and outpatient. 


So I left frustrated particularly knowing they trained 250 clinicians already and yet none of these people have been able to implement the model at their hospitals. Naturally all the way home, I kept analyzing what I said, mainly because I know what I said was discounted. I could have easily said nothing, but that did not seem genuine. 

This is a photo of the Margaret Hunt Hill suspension bridge in Dallas. It is a beauty and lit up at night. 

This is an aerial view of Dallas. It isn't anything like I imagined it to be. It is very urban and sky scrappers everywhere. Coming from a city without tall buildings, Dallas seemed like a wall of glass to me. 

 This is what Terminal D looks like at the Dallas/Fort Worth International Airport. It is artistically and aesthetically pleasing! 

Creative art everywhere!

The airport has a LiveWell Walking Path, measuring seven-tenths of a mile! It is like an airport terminal like no other..... featuring a yoga center, a walking path, and healthy food options. Not to mention tons of great shopping. Other airports could learn a lesson or two here.

The placard above pertains to this floor tile. Featured on the walking path. 

Next placard on the path. Mind you we did the whole path and also walked into the C terminal and walked all of that too. Given we sat for two days, we needed to walk. 

This is titled, Dance don't walk!

Next placard. See it tells you how many steps to the next tile!

 Entitled, Celebration!

I loved seeing these colorful plaques, the mosaic tiles, and NO crowds around us. The airport is large, so you don't feel like people are on top of you. 

 This is untitled! 

 Next placard. 

This is "early flight." Featuring a mockingbird. 

Placard





















It's untitled!

Placard

Entitled, Floating in space, a waltz. 

I couldn't capture the placard, but this is entitled, trees! It is a beautiful tile. 

Coming into DC! 

The beauty or grayness of DC. 

Tuesday, October 2, 2018

Tuesday, October 2, 2018 --
Mattie died 472 weeks ago today.

Tonight's picture was taken in October of 2004. That day, I joined Mattie and his preschool on a fall hayride at Butler's Orchard in Maryland. Mattie lasted at this particular preschool for only two months. The director was a nightmare and the school, despite its reputation, was not a good match for Mattie. With that in mind, there was NO way I would let Mattie go on a bus trip with these people, without supervising the process. The highlight of the trip was snapping this photo of Mattie in the pumpkin patch. Mattie absolutely loved being in the field, seeing pumpkins growing on the vine, and selecting his own to take home. 


Quote of the day: We’re here for a reason. I believe a bit of the reason is to throw little torches out to lead people through the dark. ~ Whoopi Goldberg


Peter and I completed two days of training. Training that is geared toward mental health providers at hospitals. As is typical, we had a difference of opinion about the nature of the training and most importantly its ability to be implemented with patients and families. 

First of all, in a hospital setting the patient is the child, NOT the family. Therefore clinical services are directed solely to the patient. Health care providers talk about family centered care and the importance of including the family and managing their needs, but the problem is there is NO time or reimbursement pathway for to provide this care. So of course our question was..... how is the intervention in front of us today going to be offered to families at treatment sites? A simple question, but has complex answers.

In addition, before coming to this training, I had issues with the rigid nature of this model. A model that teaches problem solving skills in linear steps. The problem is many of us, especially those who are educated, don't just think linearly. We can co-process many steps in the model at the same time. Despite my best attempt at experiencing my feelings about this, I felt I wasn't heard. Which unfortunately only breeds frustration in me. We have been at this for 8 hours today, so I am frazzled and agitated. Poor Peter!!! He is such a trooper and truly knows how to manage my intense feelings. I do want to mention that Peter was equally frustrated today, so this isn't just a Vicki thing. 




After the day long session, we journied through the Cancer Survivors Walk. I wanted to go back there because I read there were plaques and I wanted to read them.

As soon as Peter saw the first plaque, he warned me.... "you aren't going to like this."

Not only is the wording here awkward, but the notion of a CURE is so misleading. Especially for children. Mainly because, there are significant long term ramifications from treatment. Significant issues such as secondary cancers to mental health issues. In fact, I would say that when this reflection garden was created, children with cancer weren't even factored into the equation.

Honestly???? What on earth! Cancer is the number one killer of disease for children in our country.

There maybe treatments, but these treatments are toxic and in many cases inadequate. Keep in mind that four to five children die from cancer EVERY DAY! 

These plaques further irritated me after a very long and conflicting training for us 

Monday, October 1, 2018

Monday, October 1, 2018

Tonight's picture was taken in October of 2003. Just seeing this photo makes me laugh. Mattie was a true character and Patches, our cat, had an equally strong will. Can't you just see cartoon bubbles or a caption above this photo?!!! Mattie dropped his sippy cup filled with milk on the floor, because he was motivated to reach up and touch Patches. Though Patches did not care for the intrusion, she wasn't about to give up her pouch or position. It was the meeting of the minds. Patches understood from day one that she had to be patient and gentle with Mattie. We did not have to enlighten her, she simply got it!



Quote of the day: The meaning of life is whatever you ascribe it to be. Being alive is the meaning. ~ Joseph Campbell

I would say that one of the highlights of staying at our hotel, is this incredible 16th floor lounge. The lounge is comfortable, has lots of private space, and not a lot of noise. In addition to that, there is free food, tea, coffee, waters and soda. It is ideal and we have gotten to know the manager of the space. 

Our training started today at noon, so we spent several hours in the lounge this morning gearing up for the day. 

This is what every evening's buffet looked like in the lounge!

If I had known about the lounge, it is possible that I wouldn't have booked dinners outside the hotel! 

Last night we ventured to "uptown" Dallas. It is a TON better than downtown. We ate at a restaurant called Saint Ann's. It was lovely. They found out it was our first time dining with them, and then treated us to a piece of chocolate cake for dessert.

The lovely patio at Saint Ann's. 
















We managed through the first 5.5 hours of training today. Tomorrow we start at 8am! Here's the highlight of today. There are 24 people in attendance. Besides Peter and myself, there are three other advocates. The rest are mental health providers or physicians who work with children who have cancer and their families. 

We were asked to introduce ourselves. In a few short minutes, we and I told them about Mattie and the Foundation. We specifically mentioned the psychosocial standards of care, as being our vision. Literally after we spoke, we had MANY professionals who told us publicly that our Standards are like their bible. That they use them in structuring their programs, in justifying their jobs, and the list went on. Amazing no, that it took parents like us to lose a child, to spearhead such a vital project! A project that will change the way health care is provided to children with cancer and their families.

Sunday, September 30, 2018

Sunday, September 30, 2018

Tonight's picture was taken in October of 2004. That weekend, we took Mattie to a fall festival in Virginia. Ironically the year before, Mattie would not even entertain going down one of these hay slides. However, by 2004, he was willing to try it, if Peter went with him. So as you can see, they went together and it was a successful experience for Mattie. By the following year, Mattie was managing the slides by himself. But it was a gradual introduction to slides. Meaning, he saw them in 2003, but wanted nothing to do with them. Then in 2004, he went down them with Peter's support, and by 2005, he was free wheeling. 






Quote of the day: The man who is born with a talent which he is meant to use, finds his greatest happiness in using it. ~ Johann Wolfgang von Goethe

I began our day by checking in with the Sunny cam! Sunny has taken over the car like cot. At least he has migrated away from the door. I have to imagine that he now understands this is temporary.  I remember the first time I took Sunny to Dogtopia. For four or five days, he was guarding the door to the room. He was highly anxious and wanted out. I am glad he sees the pattern and gets the routine.

After a three and a half hour flight, this is what our approach to the Dallas/Fort Worth Airport looked like. A lovely and smooth flight, the best kind of flight.

Honestly given the clouds and grayness, I would think I was STILL in DC. Of course the skyscrapers are the tell tale sign that I am NOT home.

This is the view from our hotel room. It is a very flat and urban city.

The beige building is our hotel. The bridge over the road is a pedestrian bridge that will take us from the Marriott to the Sheraton (where the meeting will be held for the next two days). 

Dallas City Center is NOT what I imagined it to be like. We have been warned NOT to walk, especially at night. We did walk this afternoon for about a block and we both did not like the feeling around us. In fact, there is security present at the entrances of all hotels. Besides that, when you enter the hotels, they greet you and really want to know why you are there and where you are going! To me it is an uncomfortable feeling. 

There is a trolley that runs above ground. I asked the uber driver who took us to the hotel, whether he rides the trains. His answer was NO! So I am not riding them either.
 

Across the street from our hotel is the Cancer Survivors Plaza. There are many tribute parks like this all over the United States. They are funded by the Bloch Foundation.

These are the statues in the survivors park. For the life of me, I don't get the sculpture or the significance of the rectangular structures. Then I looked it up for guidance and now I get it. Not having seen the other people in this sculpture, it is hard to get the full picture of what was being represented.






So here is what I read on-line....


Richard and Annette Bloch want to build a Cancer Survivors Park in every city in the US and Canada that has over one million in population. Each park is totally unique, but three fundamental components are present in each park:

1. A sculpture as a focal point. Created by the renowned Mexican sculptor, Victor Salmones, it is eight life-size figures passing through a maze depicting cancer treatments and success. It is placed in the most visible point in the park for passers-by because it needs no explanation. People can walk among the figures, touch them, walk through the maze and generally visualize themselves being helped. It is moving.
2. A Positive Mental Attitude Walk. This is an area that a person can stroll through, meditate and read some 14 plaques; 4 are inspirational and 10 are specific suggestions on fighting cancer.
3. The Road to Recovery. This consists of 7 bronze plaques with common sense advice to use during treatment.

This sculpture is entitled, "cancer… there's hope."
It is the last work of the world renowned sculptor, Victor Salmones. He claimed it to be his finest, a labor of love. The back five figures are cancer patient and their supporters preparing to enter treatment, represented by the maze.
Notice the fear, determination and hope on
their faces.








 

This is in contrast to the joy of the front three signifying successful treatment.