Saturday, February 8, 2020

Saturday, February 8, 2020

Tonight's picture was sent to me by our Facebook friend, Tim. Tim lives in Arizona and we have never met him. Yet he creates beautiful photo creations and collages for hundreds of bereaved parents of children with cancer. He doesn't get paid, instead he does this on his own time and with his own resources. Over the years, I have learned that Tim is a volunteer at his local children's hospital and he has an only child of his own. A son, that reminds him of Mattie. 

I love this collage of Mattie! It is Mattie pre-cancer and Mattie after diagnosis. Despite the disease and its ramifications on him, the beauty of Mattie's face and smile didn't change. 




Quote of the day: Tell me and I forget. Teach me and I remember. Involve me and I learn. ~ Benjamin Franklin


I absolutely relate to Benjamin Franklin's quote. I happen to love to learn about subject areas that interest me and of course I am always intrigued by people. However, the ultimate way I learn is to 'involve me.' I appreciate hands on learning, because when I can apply concepts and theories, they come alive to me and I remember them. Back when I was in graduate school to become a professional mental health counselor, my faculty members did not educate me on the licensure process or its importance for that matter. This was something I had to figure out on my own. To become a licensed professional, besides applying and qualifying, you have to familiarize yourself with your state's laws and regulations. Again, it is one thing to read them, and quite another to have the ability to apply them on a monthly basis. Which is why I believe every professional should have the opportunity to serve on a licensure board at some point in their career. 

Which brings me to what I did today. I was appointed a while back to a DC licensing board. Today board members (from 166 boards) were asked to come in for an ethics training. It's a Saturday and as such, you would think people wouldn't want to be there and that they would not be engaged in a weekend training. I didn't observe any of that. People were genuinely happy to be there and to serve in their position. That caught my attention. It also helped that the staff were lovely and they were respectful of our time. 

When I was appointed to the board, the Mayor's Office of Talent and Appointments (MOTA) did not exist. It was created under Muriel Bowser and it was helpful today to learn more about the office, what it does, and how board members can turn to this office for assistance.

Why does DC or any state for that matter need boards? Because boards provide guidance to the city/state. Licensing and regulatory boards have members with professional and personal expertise in a particular subject matter, and help to develop standards for licensed professions. Boards may also establish regulatory standards for professions and agencies.

I am not a big Valentine's Day person, but check out this postcard Peter and I got in the mail. It is from Union College, where we met! In all the years we have been married, we never received a Valentine's postcard!

How sweet it is to be loved by U. A great play on words, because it truly implies that the love goes both ways.... meaning that Union College loves us and we love Union College. Either case, after all these years, it is nice that they are aware of the fact that two of their graduates met on campus, fell in love, and remain married. 

Friday, February 7, 2020

Friday, February 7, 2020

Tonight's picture was taken on February 6, 2009. You maybe asking yourself, what was going on here?! This was a physical therapy (PT) session! Yes indeed, PT with Mattie was never boring. Thankfully Anna (Mattie's PT) learned quickly that she had to think outside the box with Mattie. In this line up, was Mattie, Jenny (one of Mattie's art therapists), Denise (Mattie's social worker), Jessie (one of Mattie's art therapists) and a PT intern. All of them were participating in Mattie's session. Getting Mattie out of his wheelchair and taking a few steps took a herculean effort. Having an entourage to cheer on Mattie made a huge difference in his level of participation. 


Quote of the day: I cannot give you the formula for success, but I can give you the formula for failure, which is: Try to please everybody. ~ Herbert B. Swope


Today I had the opportunity to chat with a woman who entered a doctoral program but never completed it. She didn't because she had issues with her advisor. Issues that apparently others also had with this person. Apparently the issues were so stressful that she reported her advisor to the department chair and the dean. Mind you this is a bright, tenacious, and creative woman we are talking about, so her walking away from her degree wasn't a personality flaw. 

Unfortunately there are many, many other students like this woman who never get a Ph.D. Completing a Ph.D. program is not easy. My joke at the time was if I ever finished and obtained my doctorate, I was going to go on Oprah to share the hazing, belittling, and total lack of control a doctoral student has over his/her life! Certainly to obtain a Ph.D., you have to be bright, curious, and have the passion to pursue knowledge and contribute to research. However, these qualities are NOT what will get you through a program. On the contrary, for me personally, I found what got me through was being humble, the ability to work with difficult people, and to assess what I needed to do to please my advisor and dissertation committee. Unlike tonight's quote, the formula for success to obtain a doctoral degree is to please everyone! In fact, if you don't please your research committee, you could get stymied for years or even fail your dissertation defense! I saw that happen three times when I was in graduate school. 

The whole conversation I had today, reminded me that when I did complete my doctorate degree in 2003, I started offering how-to sessions at professional conferences. Tricks that I learned to help other struggling Ph.D. students! These sessions were always VERY popular. So much so, that students asked me and my mentors to write a book. Which we did (see the link below, the editors dedicated the book to me and Mattie). Unfortunately while we were writing, Mattie got diagnosed with cancer. Therefore I did not have the time to be an editor, only an author. I may have left this part of my life behind, as I now focus on childhood cancer, but the ordeal, hoops, and hurdles I had to jump through to get a Ph.D. will never be forgotten. 

http://www.universityreaders.com/pdf/Selecting-and-Surviving-a-Doctoral-Program-in-Counseling_sneak_preview.pdf

Thursday, February 6, 2020

Thursday, February 6, 2020

Tonight's picture was taken on February 10, 2009. Mattie was home between treatments and trying hard to take a few steps with his posterior walker. Truly Mattie was very brave, courageous, and a fighter. Given the intense pain he was in, it truly was remarkable that he even complied with our request to use his legs and try to walk. Of course back then, our goal was for a cure and to get Mattie back to his pre-cancer life. However, now I know more, because even if he had survived, he would have faced a lifetime of physical and mental health consequences. 





Quote of the day: We’re no longer on a cruise. Those days are gone. ~  David Abel (passenger on the Diamond Princess)


No matter what country you are living in, the coronavirus means something to you. This week, thousands of passengers abroad a Princess Cruise in Japan were quarantined. Quarantined for two weeks mind you! That may not sound so bad, as we all have visions of cruising as having access to non-stop food, entertainment, and excitement. True, under normal circumstances. But this is far from normal. 

The cruise ship, the Diamond Princess, with a total of about 3,700 people on board, arrived in Yokohama on Monday night after a 14-day trip to Southeast Asia. Passengers and crew have been forced to stay on the vessel since an 80-year-old Hong Kong man who disembarked last month tested positive for the virus.

Are you getting this? This 80 year old passenger was NOT on this current cruise. He was on a previous cruise and yet the virus lingered on the ship and the next set of passengers voyaging on the ship contracted the disease. Imagine going on vacation, being away for two weeks and then on your last vacation day you learn that you aren't returning home! Instead, you have to remain on board the ship (confined to your room) for another two weeks. Which equates to a non-planned month away from home. 

Having just gotten back from a Christmas cruise and being very familiar with Princess Ships, I can't imagine being isolated to a cabin room for two weeks. I feel for all the passengers with inside cabins, those traveling with small children, and those who need medications for daily living. Fortunately I read that Princess Cruises has risen to the occasion and is filling all prescriptions for free for passengers. Passengers are getting free phone and wifi services and now meals are steadily being delivered to passenger cabins. But it sounds like the first day or so, meal service wasn't consistent. Makes me think that I may need to travel with back up food when going on a cruise. A thought that would have never crossed my mind before this incident!

Here is a Time Magazine video interview with an American Couple aboard the Diamond Princess (click on the photo below).

Interview with David Abel (British Citizen). Take note that they are in a mini-suite. Regular cabin rooms are much smaller! Click on the photo below to see the video. 

Princess Cruises Notices:
https://www.princess.com/news/notices_and_advisories/notices/diamond-princess-update.html

Wednesday, February 5, 2020

Wednesday, February 5, 2020

Tonight's picture was taken in February of 2009. Mattie was home between hospital visits and as you can see he had built a volcano and watched it erupt. Mattie loved hands on learning and one of his favorite places to play was on the floor between our dining and living rooms. So many things were created there, both pre-cancer and after Mattie was diagnosed. Given how Mattie was feeling, it was remarkable that he could play and was interested in building and creating. I am not sure an adult experiencing the same physical and emotional issues as Mattie would have been as determined and brave. 



Quote of the day: Your self-esteem won’t come from body parts. You need to step away from the mirror every once in a while, and look for another reflection, like the one in the eyes of the people who love you and admire you. ~ Stacy London


I can say that I endured a Super Bowl party. I put it that way because football and all sports for that matter are not high on my interests list. Certainly if the NFL were counting on me, then they'd have a big problem. As I wouldn't condone the extraordinarily large salaries, high ticket prices, or let's talk about the price of airing a commercial during the Super Bowl. I just don't get it! 

With that said, the only part of the Super Bowl that I watch is the half time show. But even that I could do without! I caveat what I am saying, by sharing that I do not care for floor shows, which is what the half time show is, that 
involve lewd and crude body movements, not to mention women who are scantily clad. Those who saw the half time show know that it was performed by  
Jennifer Lopez and Shakira. Well that is if you focused on them at all, since there was a light show, thousands of people performing and standing all around them, fireworks, and many other distractions going on at the same time on stage. 

I know there is all sorts of commentary on social media about this show. For the most part people LOVED it, and then there were the rest of us. Who find the whole thing offensive and wonder why an American event, that should be family oriented, agrees to host such a show. In fact at the party I attended, there was a little girl who was 8 years old. Her parents allowed her to watch the half time show and as she was watching, she was emulating what the performers were doing.... which was she raised her shirt way up so that we could see her stomach and rib cage. I made a mental note of that. 

But what caught my attention was that the women around me had plenty to say while watching these women performers. They commented about how fat and unattractive they felt in comparison to Jessica Lopez and Shakira. You wonder why our society has body image issues and eating disorders? Look no further than our media who sexualizes and portrays women in unnatural ways. Honestly I heard so much negative commentary during the show, that I had to say something. What I said was they can't compare themselves to these women, as we don't know what the performers have done or continue to do to themselves to look this way. Which means surgeries, medications, personal trainers, make up and hair artists and the list goes on. It is a ridiculous and unequal comparison..... which left me questioning the nature of the whole half time show. 

Why create a show that is inappropriate for young children and elicits negative body images for those watching the show? I know the answer of course, sex sells. In the future, I am better off NOT watching the show as it provides me no pleasure, but only irritation.  

Tuesday, February 4, 2020

Tuesday, February 4, 2020 -- Mattie died 540 weeks ago today. 

Tonight's picture was taken on February 6, 2009. You will notice a cup and straw near Mattie. What was in it? Try a vanilla shake. Mattie had cravings for different things while on chemo, and the vanilla shake was a favorite. Since cancer left Mattie emaciated, I was thrilled for him to have the calories. But how about that colorful thing in front of Mattie. Well that was a volcano he made that day in the child life playroom. It wasn't only colorful, but we actually got to see a small eruption come from the mouth of the volcano. 

Quote of the day: The Centers for Disease Control says that there are 76 million cases of food poisoning in the United States every year, 350,000 hospitalizations, and 5,000 deaths. Is that a lot or a little? Well, it depends on how you look at it. ~ Marion Nestle

Peter has been sick since Sunday night with food poisoning. Being ill like that is debilitating and he was also running a fever for two days. Slowly he is regaining his strength. 

Since it was 60 degrees in Washington, DC today, we took Sunny for a walk at Scott Run in McLean, VA. A park that Mattie used to love to explore!  

Sunny also went to get groomed today! So he looks VERY handsome. He wasn't particularly interested in getting his photo taken, but he complied. He was more focused on exploring the woods. 

This is a sight we passed many times with Mattie. Mattie loved it mainly because there were stepping stones to get from one side to the other. 

See the stepping stones with Peter and Sunny on the other side? Sunny refuses to walk on the stones, but instead goes right through the water! Needless to say, Sunny loved it and Peter was able to get out and get fresh air. 

Monday, February 3, 2020

Monday, February 3, 2020

Tonight's picture was taken on February 4, 2009. You maybe asking yourself, what in the world was happening here? What was happening was a physical therapy session for Mattie. Ironically, Mattie wasn't the one doing the physical therapy! Instead, he had me and Anna (his physical therapist) down on the floor. Mattie wanted us first to do the activity (Twister) before he'd try it! This wasn't an unusual request from Mattie, as I was used to being the guinea pig! But Anna was a good sport that day, as we both took direction from Mattie and played along. To me it was very important to be part of the process and for Mattie to know that I wasn't going to ask him to do anything I wouldn't do myself. 


Quote of the day: Have you ever found yourself, in the midst of unimaginable grief, pain, heartache, or despair, wondering how you are going to make it through another day? Wondering where your next breath is going to come from? Your world has crumbled beneath you and has left you feeling shattered, empty, and hopeless. And then a well meaning friend or family member comes along and drops the infamous “Everything happens for a reason” bomb. You smile kindly and nod. That’s all you can do to keep yourself from punching them in the face. ~ Christine Suhan


Last night Peter and I went to a Super Bowl party. It was an interesting experience because I would say only about a third of us did not want to see the game. This third landed up chatting and eating, while others watched the game in a different room. While talking with some of the women, one woman told us that "everything happens for a reason." I listened to the context she was using this trite saying and I certainly appreciated what she was saying/sharing. But to me this is a platitude that needs to be shot down and shot down quickly. Because in all reality there are horrible things that people experience, have to live with, and also have to find ways to move forward while carrying such emotional baggage. Frankly there is NO GOOD POSSIBLE REASON to explain away the horrors that happen to us. 

People use this expression when bad things happen to us. I am not sure who they think this saying helps, but chances are it isn't the recipient. I told this woman, as it related to me, that I did not need to lose Mattie to cancer in order to know the importance of helping other people. Long before Mattie got cancer, I chose a profession that helps people and I even got a license to do just that. So I did not need to see my six year old struggling through cancer treatment and then die in a horrific manner to become a compassionate and charitable person. Unfortunately there is NO OTHER way to interpret..... things happen for a reason! There are no good reasons and instead, we need to eliminate this nonsense from our lexicon. 

The following article caught my attention, Let Go Of The Myth That Everything Happens For A Reason: Try This Instead.... Failure and loss are inevitable, but trying to rationalize them can be the last thing you need to do. In particular these two excerpts from the article I found most poignant....................

But, I've always found it profoundly unsettling and extraordinarily selfish to believe that the sole purpose of life's heartaches, failures, losses, illnesses, and assorted derailments is to teach us some fateful lesson that we have been preordained to learn. A failed business, a severe illness, divorce, the loss of a loved one, dashed dreams, natural disasters, each is excruciating in its own unique way. But, the idea that life's unfairness is somehow supposed to be justified by a scripted reason is to me the ultimate abdication of accountability; hell, why mince words, it's outright lazy. 

Its' About Creating Meaning, Not Finding Reason................When my mother struggled for nearly a decade with a horrid disease that robbed her of mobility and cognition one synapse at a time I repeatedly tried to tell myself that there was a reason. Otherwise all of that pain and suffering was for nothing. Each time I'd have that thought I'd then look at her and think, "Whatever I may be learning about the fragility and value of life, how could I possibly justify a reason for her pain?" Was the world created with reasons to teach me lessons at the expense of someone else's suffering? What I realized was that it didn't happen for some predetermined prescriptive reason. Instead it was my responsibility to create something much more important than a reason--I had to create meaning. 

The author of this article and I are on the same wavelength. In fact, I pushed  back on this woman last night who used this trite saying with me and instead I told her that there are no good reasons for why bad things happen. The best we can do, as we try to move forward and live with them, is to find meaning from these bad experiences. Which I believe is what Mattie Miracle is all about. Peter and I have no reasons to explain why Mattie was diagnosed with cancer. But from Mattie's battle we learned that childhood cancer is not just about the medicine. We take that lesson with us each day as we try to create meaning from Mattie's suffering by helping other children and families. 

It's not about reason, it's about meaning! I love it!!!

Let Go Of The Myth That Everything Happens For A Reason: Try This Instead.....Failure and loss are inevitable, but trying to rationalize them can be the last thing you need to do:

https://www.inc.com/thomas-koulopoulos/its-time-to-say-it-everything-does-not-happen-for-a-reason.html

Sunday, February 2, 2020

Sunday, February 2, 2020

Tonight's picture was taken on February 2, 2009. Hard to believe 11 years ago today. Mattie was in the child life playroom, and given that he was wearing clothes, this signals to me that he was admitted that day to the hospital for treatment. I know this because when living in the hospital Mattie only wanted to wear pajamas. On that day, my student, Pam, came to visit us. However, if you look at Mattie's face, you will see his intense level of unhappiness. Not directed to Pam per se, but just in general. Mattie preferred no talking and no visitors. Something that I did not express on the blog, but it was a reality that I was managing for months. Because Mattie was a child, I felt it was important to keep his community engaged and involved in his life. So I never turned away visitors. But it was super challenging managing visitors and Mattie's mood at the same time. Back then, I was under some delusion that Mattie would eventually go back to school, and therefore, these connections and bonds with the community would be needed. Unfortunately I was wrong.   


Quote of the day: It's not the SIZE of the dog in the fight, but the size of the FIGHT in the dog. ~ Archie Griffin

Did you hear that  Punxsutawney Phil did not see his shadow today.... meaning spring is coming early! It sure feels that way in Washington, DC! Which is lovely! I remember milder winters like these when we first moved to DC over 20 years ago. 

Sunny got another walk today on Roosevelt Island, and with that we saw a bunch ('a herd') of 6 deer together. It was a lovely pre-spring sighting. 

As I mentioned yesterday, we are invited to a Super Bowl party this evening. This is a first for me! Not being a sports fan, this should be no surprise that I typically neither watch the game or gather with people to share in this moment! Nonetheless, we are going, so I figured I would look up some Super Bowl facts. You can check them out below! 

Super Bowl Facts
https://www.mentalfloss.com/article/91643/8-facts-about-super-bowl-i


In 1966, two football leagues were vying for gridiron dominance: the venerable NFL and the sport's newcomer, the AFL. On June 8, 1966, the two leagues announced their plans to merge, rather than compete over players and a split fan base. This meant a new championship game had to be conceived that would show which was the dominant league every year. Today we know it as the Super Bowl—one of the most polished, extravagant events of the entire year. But on January 15, 1967, when the first AFL-NFL World Championship Game took place, it was something bordering on a disaster, with television mishaps, a dispute over the name, and thousands of empty seats marring the very first Super Bowl Sunday. To see how the big game nearly fell apart, here are three facts about the first Super Bowl.

1. AT FIRST THE GAME WAS ONLY CASUALLY KNOWN AS THE SUPER BOWL.

In 1966, meetings were going on about the first-ever championship game between the NFL and the upstart AFL set to be played in January of that next year. In addition to talking about location and logistics, the big question on everyone’s mind was what to call it. Though Pete Rozelle, the NFL’s commissioner at the time, suggested names like The Big One and The Pro Bowl (which was the same name as the NFL’s own all-star game), it was eventually decided that the game would be called … the AFL-NFL World Championship Game.

A name like that just doesn’t create much buzz, though, and the newly merged league needed something punchier. Then Lamar Hunt, owner of the Kansas City Chiefs, recalled a toy his children played with, a Super Ball, which led to his idea: the Super Bowl.

The name picked up support from fans and the media, but Rozelle hated it, viewing the word “Super” as too informal. By the time the game began, the tickets read “AFL-NFL World Championship Game,” but people were still offhandedly referring to it as the Super Bowl. By the fourth year, the league caved and finally printed Super Bowl on the game's tickets. For Super Bowl V, the Roman numerals made their debut and stayed there every year except Super Bowl 50 in 2016. (The first three championship games have also been officially renamed Super Bowls retroactively.)

2. THE FIRST SUPER BOWL AIRED ON TWO NETWORKS.

Since the first Super Bowl involved two completely different organizations, there was a bit of an issue televising the game. NBC had the rights to air AFL games, while CBS was the longtime rights holder for the NFL product. Neither station was going to miss out on its respective league’s championship game, so the first Super Bowl was the only one to be simulcast on two different networks. It turns out the competition between the two networks for ratings superiority was just as intense as the helmet-rattling game played on the field. Tensions were so high leading up to game day that a fence had to be built in between the CBS and NBC production trucks to keep everyone separate. 

3. SUPER BOWL I DIDN'T EVEN COME CLOSE TO SELLING OUT.

The cheapest price for a Super Bowl LIII ticket—which will take place on February 2, 2019—is currently hovering between $2500 and $3000, but frankly, you could probably charge people double that and the game would still be a guaranteed sellout. The first Super Bowl, however, didn’t quite have that same cachet behind it. With tickets averaging around $12 (compared to $4,000 to $5,000 in 2020), the AFL-NFL World Championship Game couldn’t manage to sell out the Los Angeles Memorial Coliseum in 1967. It’s still the only Super Bowl not to fill up its venue.


Despite blacking the game out on TV stations within 75 miles of the Coliseum to get fans to the stadium rather than watching at home, about a third of the stadium’s seats were empty. Some fans balked at the steep $12 ticket prices, while others were so incensed at the blackout that they stayed away out of protest.