Saturday, June 27, 2015

Saturday, June 27, 2015

Tonight's picture was taken in June of 2009. We were visiting our friends Tanja and Katharina and in their backyard was this wonderful tree swing. Mattie wanted to go on the swing. However he did not have the strength to hold on or certainly swing himself. So I put him on my lap and off we went. 


Quote of the day: What comes from the heart, goes to the heart. ~ Samuel Taylor Coleridge


Peter told me yesterday that it was going to be raining ALL day today! I was happy that he warned me of this, because it gave me time to prepare for how we should spend our day! Weekends for us without a plan are NO good. Especially when that means we will be trapped indoors. Since I have been feeling particularly horrible and struggling with pain, I wasn't sure what I was going to be up to, so I planned for us to see a community play. Since both Peter and I enjoy the arts and like to support live theatre, this seemed like a great way to spend the day. So we went to Bethesda to the Roundhouse Theatre and saw their production of Impossible, A Happenstance Circus. 

I am intrigued by the circus. Not the circus of today, but the traveling circuses that we only hear about now, in which people who we would consider unique were put on display and exploited. Such things would never happen today, or perhaps they still happen in more subtle ways, but they certainly do not happen in this very visual and profoundly inappropriate manner as they did back then. In many ways it is hard to believe in my mind that people bought tickets to see conjoined twins, the "dog faced boy," and the list goes on. 

"The Impossible, A Happenstance Circus" was a simple show. In fact, I think before seeing the show, it would help the audience member to know more about the ensemble company and their philosophical performing style before setting foot in the theatre. Because once you do, I think it greatly helps the theatre going experience.   

The Happenstance Theater Ensemble believes in the simplest means - humor, music, silence, text and beauty - they seek to elevate the moment when the performers and audience meet, to lift the encounter beyond the daily and pedestrian into the realms of dreams, poetry, and art. Meaning is often found by happenstance. http://www.happenstancetheater.com/#!about/c10fk

IMPOSSIBLE! A Happenstance Circus is a theatrical collage on the theme of circus set against a backdrop of hard times. In a kaleidoscopic homage to classic circus characters and images of the 1930s and 1940s.

The ensemble addressed how the circus performers ate a very limited diet of just potatoes, because they couldn't afford anything else, and that they basically had no social life because they were always working and traveling. Not to mention were considered social outcasts. However, unlike the Broadway musical, Sideshow --- which I TRULY LOVED, there was no plot development in this show nor any sort of relationship between characters which I would have loved to have seen in order to get to understand life behind the scenes of the circus. Yet I understand the premise of this show was to appreciate the "show" itself and the performance of the acts. The actors accomplished this without sound effects, special effects, and other tricks and gadgets. They went back to pantomime and using one's imagination. Which for those of us in the audience over a certain age.... we could do this. But for the preteen and teenage population, I could hear a lot of groaning and mumbling in the audience because they are used to SPECIAL EFFECTS and reality spoon fed to them, rather than having to create it for themselves. 

To see Scenes from Impossible go to: http://www.happenstancetheater.com/#!impossible-a-happenstance-circus/c24zh

Friday, June 26, 2015

Friday, June 26, 2015

Tonight's picture was taken in June of 2009. Mattie was visiting our friend Tanja. In her backyard she had a bubble machine going and to Mattie's delight he took a huge flyer swatter and was batting at the bubbles. Mattie was truly enjoying that moment. Mattie may have looked like he could have jumped up from the chair and run around, but in all reality he couldn't move a step without great assistance. After Mattie's limb salvaging surgeries, he never walked again independently, and for the most part was wheelchair bound. This was very hard on Mattie physically and psychologically. 



Quote of the day: Many times when we help we do not really serve. . . . Serving is also different from fixing. One of the pioneers of the Human Potential Movement, Abraham Maslow, said, "If all you have is a hammer, everything looks like a nail.' Seeing yourself as a fixer may cause you to see brokenness everywhere, to sit in judgment of life itself. When we fix others, we may not see their hidden wholeness or trust the integrity of the life in them. Fixers trust their own expertise. When we serve, we see the unborn wholeness in others; we collaborate with it and strengthen it. Others may then be able to see their wholeness for themselves for the first time. ~ Rachel Naomi Remen



The day started off fine and I thought I was feeling better, and then by this afternoon, pain returned and I was calling my doctor again. I just love having to contend with these issues and having to advocate for my needs with this doctor. So needless to say I have to see her again on Monday. But everything I was trying to avoid on Wednesday, I am facing now. I wanted to cut these symptoms off at the pass on Wednesday to avoid challenges and pain this weekend. But it doesn't look like I was very successful! I am signing off for today in hopes of looking for less stress and more rest over the next few days.  

Thursday, June 25, 2015

Thursday, June 25, 2015

Tonight's picture was taken in June of 2009. Mattie was in the HEM/ONC clinic and sitting between Brandon and Jocelyn, his two cancer buddies. Brandon and Jocelyn were really the only two people Mattie related to who were patients, which was ironic considering their age differences. But it did not matter, their friendship transcended any differences. What was going on at the art table was a whole Sponge Bob theme, as Brandon and Jocelyn knew how much Mattie loved Sponge Bob. Now I am not sure Mattie actually loved Sponge Bob, or he simply knew I disliked him and therefore enjoyed watching my reaction to hearing about the conversation!


Quote of the day: Do you not see how necessary a world of pains and troubles is to school an intelligence and make it a soul? ~ John Keats


I started the day feeling good. I went to my zumba class and went about my day. But by 5pm, the bladder pain started all over again, and I am now feeling as awful as I was yesterday morning when I woke up. So fortunately I saw my doctor yesterday and have started the medication she prescribed me. While I was commuting to her office yesterday, I was listening to this horrible story on the news about a man who went for a colonoscopy procedure in Northern Virginia. While sedated, he happened to leave his cell phone on the record mode and was recording everything that was being said about him during the procedure. Unfortunately the commentary was very defamatory, in which the doctors joked that the patient could have ebola or syphilis. None of which was true, and worse because they were annoyed with the patient, they added a false diagnosis to his medical record. I included a Washington Post article about this terrible court case below, in which the jury apparently awarded the patient, $500,000.  

I am not sure what is more upsetting about this story! But I have to say the dialogue, which you can hear for yourself, that I find most upsetting is in which one doctor says..."They (patients) need to have medical problems" and the other who says, "I call it the Northern Virginia syndrome" is disturbing on many levels! What they are implying is that patients come to them looking to be ill. I am sure there is a segment of the population for whom this is true, and there is a mental health condition to identify this! But to label all of us as either hypochondriacal or a malinger is unacceptable and highly insulting. Especially when we are coming to doctors in many cases in need of answers to symptoms we are having! I will let you read it for yourself and come to your own conclusions.

Anesthesiologist trashes sedated patient — and it ends up costing her:

http://www.washingtonpost.com/local/anesthesiologist-trashes-sedated-patient-jury-orders-her-to-pay-500000/2015/06/23/cae05c00-18f3-11e5-ab92-c75ae6ab94b5_story.html?tid=hybrid_collaborative_2_na

Wednesday, June 24, 2015

Wednesday, June 24, 2015

Tonight's picture was taken in June of 2009. Mattie was home between treatments and as you can see was experimenting with his googles that he just received. The googles had a straw attached to them and they were a clever gadget that enabled him to exercise his lungs post surgery. The googles were filled with so much milk that you could hardly see Mattie's eyes! Despite being in pain, feeling isolated, sad, and in many cases needing a lot of help holding, playing or using a gift..... Mattie was always a good sport and eagerly opened each of the gifts people from his care community sent him and was always gracious about each gift received! 


Quote of the day: Things which matter most must never be at the mercy of things which matter least. ~ Goethe

I woke up at 5am this morning not feeling well! It was the kind of pain, a pain I know well, that wakes me up out of a deep sleep. It is bladder pain. This type of pain makes it impossible to rest, sit still, or frankly think about anything else other than seeking immediate help! So I called my doctor's nurse and left her a message, because I wanted my doctor to prescribe me antibiotics. However, when you have a chronic issue you also learn to triage yourself. So I started popping things in order to function otherwise I know that this pain will make me absolutely crazy. As the morning rolled along, I also emailed my doctor who insisted I come into the office to be seen. Mind you I just saw her two weeks ago, since she is the one who ordered me that upsetting scan. But in order to get what I wanted, I know I also have to comply with her demands at times. So it works both ways. I am quite sure that if I did not self medicate on antibiotics and other things I had at home, I would not have been physically able to drive 40 minutes in traffic to her office. I wonder if doctors even think of these things?! A patient in terrible pain.... why not then have the patient drive in morning rush hour, to come to the office to give a specimen and be seen? NO PROBLEM..... sounds reasonable, no?! I don't know what part of the brain functioning is missing sometimes from the medical profession. 

If the doctor doesn't get me laughing, then her nurse practitioner had me on the floor. I left my doctor's nurse practitioner a voice mail at 5am. By the time I got home, after being seen by the doctor, the nurse called me back and left me a message. But it was the content of the message that was an absolute riot. Clearly the nurse did not listen to the actual message I left her before calling me back. That would have been step one to good patient care. She missed that step! Or she could have looked at my chart and seen that I just visited this doctor two weeks ago and had a thorough evaluation. She missed that step as well. But the final icing on the cake was when she left me a message and in the message she started talking and you could tell it was just haphazard, free flowing consciousness. She wanted me to know that I needed to come to the office today since I had symptoms and because the doctor hadn't seen me for some time, then in the next breath retracted her statement since she said..... no I see in the chart you just saw the doctor. In the second breath, she then went on to say, OH NO, I see the doctor just prescribed you something today. It was true dysfunction on the phone! To me this all could have been avoided if the nurse had taken two minutes to look up my name and check her computer screen, got her facts straight and then started speaking. It just left me with a bad feeling that people who are this scattered are overseeing my healthcare and I am reminded of a statement Jey (Mattie's CT transporter and Big Brother at Georgetown) used to say to me often. Jey would say that sometimes people working in healthcare forget why they got into the profession to begin with, but it is important to always remember that every patient means something to someone and may come into a medical setting needing support. Which is the role of the health care provider, not just to provide the care! You can see why Jey and I saw eye to eye and why Mattie related to him from the get go. 

Tuesday, June 23, 2015

Tuesday, June 23, 2015 -- Mattie died 302 weeks ago today.

Tonight's picture was taken in June of 2009. Mattie was recovering from his sternotomy, which removed nine tumors from his lungs. Part of his recovery process required him to do breathing exercises (since during surgery air sacs in the lungs can flatten and exercises help to expand the lungs back to full capacity)! Something Mattie absolutely hated! Because Mattie refused to comply with his respiratory therapist, one of his PICU nurses decided to design her own creative way for Mattie to exercise his lungs using a basin, water, straws, and a cut out of Sponge Bob! Naturally it involved me being a part of the therapy! I was so used to being Mattie's therapy partner that I gladly stepped in. The goal was to see who could blow Sponge Bob threw the water and across the finish line the fastest. It really helped having a nurse who understood Mattie and could think outside the box to get things accomplished. 




Quote of the day: Friendship is the hardest thing in the world to explain. It's not something you learn in school. But if you haven't learned the meaning of friendship, you really haven't learned anything. ~ Muhammad Ali


Recently I learned about two people who we work with through the Foundation that decided after many years of working in their current jobs that they wanted to leave their positions. I am not sure why this surprises me. On some level it surprises me and yet on the other hand, given the climate of both work environments..... I always wondered how these folks made it work for so long! But my connections with these individuals was not simply the fact that they worked for a certain place or organization. It was more about them and who they were as individuals and how we connected in our visions about childhood cancer. I have performed many roles and tasks in the course of my lifetime, but being the president of Mattie Miracle, is a very different job. It is a job and yet it is a very personal quest. Every task I do is done with a lot of thought and every connection I make with someone is not just your usual business acquaintance. If you are going to do any real and meaningful work for the Foundation, there will have to be a personal relationship established. If one doesn't want to make that investment with me and with the Foundation, then guess what? You aren't working with me! It really is that simple. It is my philosophy and a philosophy I stick with, because at the core this isn't just a job, it is a task that was given to me by Mattie. Understanding this and valuing the meaning behind the work that I do each day in a way requires the building of a friendship between people. 

So when I learned that two people we have known were leaving their jobs rather suddenly, my first thought was truly for their concern, welfare and for their health. I wanted to make sure that there wasn't something wrong that caused them this dramatic switch. Once that was established then we could discuss and strategize how these changes would impact their future and our relationship together. But the beauty of having a RELATIONSHIP with people is that once you have a strong connection and you have a meeting of the minds, it doesn't matter where they work. The minds always need to connect.... which is what will happen with our colleagues. They maybe moving professional homes, but we will remain connected and working together. So I take Muhammad Ali's quote quite seriously. Do I think you can teach people about friendship and how to be a good friend? I once thought so, now I am not so sure (that would have to be another blog posting).... but I do think that valuing a connection and nurturing it is the key to a happier and more enriching life. 

Monday, June 22, 2015

Monday, June 22, 2015

Tonight's picture was taken in June of 2009. I remember this day as if it were yesterday, and I bet if I asked Peter if he recalls this day, he would too! It wasn't so much the fact that we took Mattie to see a Nationals baseball game, but it was what happened while pushing his wheelchair through the Park that was memorable. We had a ton of people staring at us and truly looking at Mattie as if he was odd and had four heads.... rather than having compassion and understanding! The only lovely person we met that day was a man from the Army who was giving out free t-shirts. The slogan on the t-shirt was.... Army Strong. He came over to Mattie and he said that he thought Mattie deserved this shirt. It was a lovely gesture and it meant a lot to me. After Mattie's death, Peter wore that shirt for many years to come. 


Quote of the day: Nobody realizes that some people expend tremendous energy merely to be normal. ~ Albert Camus


It has been a long day today of working and running around. I feel like I can now say I have officially wrapped up the Foundation's Walk, as I have just finished writing the June newsletter which reports out the results of the Walk. It is a wonderful feeling to have that behind me. But Monday, Post-Father's Day is always challenging. Actually a Monday, post any holiday is hard. Not that holidays themselves aren't hard, they are, but we brace ourselves for them and then when they are over, the feelings from them seem compounded. So Camus' quote really hit me tonight. Because I agree with his notion, as if he thought of someone who was grieving when he wrote it. To appear normal and to fit within society, after losing a child, requires great strength and it does require a great expenditure of energy. 

Sunday, June 21, 2015

Sunday, June 21, 2015

Tonight's picture was taken on June 21, 2009, Peter's last Father's Day with Mattie. This photo was taken in the hospital's garden. We took Mattie outside for some fresh air that day and while strolling about, we passed the medical school's library. Outside the library are these huge garden stones. Mattie happened to love these stones and always wanted to take one back to his room with him each time we went out to the gardens. That day he was very insistent about taking a stone. If you knew Mattie, then you knew any time we went for a walk when he was well, he always came back from one of our adventures with either a stick or a rock. Given Mattie's battle with cancer, I figured that taking one stone would be okay, given that I knew it would make him happy. This stone remains with us today and we use it by our front door as you will see below. It is our memento of Father's Day 2009, and perhaps Mattie knew that we would need in the future this physical symbol to help us remember and capture that moment in time.


Quote of the day: A Father is neither an anchor to hold us back, nor a sail to take us there, but a guiding light whose love shows us the way. ~ Anonymous

On June 15, 2009, Mattie underwent a sternotomy to remove 9 tumors in his lungs. Four days later, Mattie decided he wanted to give Peter his Father's Day gift to Peter.... three days early! Mattie hand made this gift for Peter and he was very excited to give him the gift! I think this is noteworthy, given the fact that Mattie was recovering from a major surgery. You can see the fact that Mattie's chest was cut open in half. 

Here was a photo of the opened gift! Mattie constructed a boat for Peter out of a cardboard box! Literally there was nothing Mattie couldn't make out of a regular packing box! 

A photo of Mattie's Father's Day stone, which we still have by our front door!

Our day had a rough start, but I have come to the conclusion that Facebook has one good purpose.... it helped Peter get feedback and support today on Father's Day. Which is needed, because the worst thing about holidays for a grieving parent is to be forgotten. 

I have been so upset with Facebook, as they have shut down our Foundation's profile page, forcing our profile and fan pages to merge. But in the process of this happening, Peter established his own personal profile page in order to manage our Foundation page. But now Peter uses his personal page on Facebook to post his thoughts and feelings about Mattie. In a way, it is like his blog. Today he received many wonderful comments to the posting of the photo above, which I am very happy about, because typically people do not reach out to Peter. Mattie may not have been physically with us today...... but today, like everyday, he was remembered in our hearts and is with us in spirit and in everything we do.