Saturday, July 11, 2015

Saturday, July 11, 2015

Tonight's picture was taken in June of 2009. Mattie was in the clinic of the Hospital. He was playing at the art therapy table with his buddy, Maya. Maya was the only friend he had at the hospital who was his age. All his other friends were at least a decade older. Maya and Mattie were engaged in a very creative play that day, involving aliens from outer space. They designed the set, the creatures, and as you can see were giving us all a performance!


Quote of the day: Trees and plants always look like the people they live with, somehow. ~ Zora Neale Hurston


I found this quote today and I happen to love it! To me it is spot on. You can tell a lot about a person based on his/her garden or lack there of. How is the garden planted, what is in the garden, is it organized or free flowing, colorful or not, how is it maintained, are things dead or alive........ and the list goes on! Gardens do reflect the personalities of the people who cultivate them in one way or another. 

Peter and I really wanted to see the lotuses at the Aquatic Gardens today. They bloom around July 4th every year. However, we did not realize it was the annual lotus festival at the gardens today and HUNDREDS of people were there to see the flowers in bloom. We thought it was last Sunday and we missed the crowds. But we were wrong! So literally we drove to the Gardens, just to drive right out of the park. Neither one of us like crowds and there is no way we are going to see this beautiful sight surrounded elbow to elbow with so many people. So instead we turned the car around and headed to the US National Arboretum. That was the right thing to do, because we saw some beautiful sights today. 

Typically we have gone to the Arboretum in April, for the blooming of the azaleas. The Arboretum has hundreds of them and they are incredible. My joke with Mattie was that the azaleas always bloomed in celebration of his birthday. He used to love when I said that as well as coming to visit the Arboretum and the azaleas. The Arboretum is a wide open space with 446 acres with 9.5 miles of winding roadways. So it gives you the feeling of being any where but in a large city like DC.   

Peter drove to a part of the Arboretum that we haven't visited in at least a decade. I am so happy we journeyed to the Asian Collections today. It was a very serene part of the property and filled with all sorts of amazing flowers. 

As we were walking along one of the pathways today, we came across this wonderful purple bush. This bush was a butterfly magnet! At least two large butterflies were flying around it! I captured this beautiful Eastern Tiger Swallowtail in her glory! 

What I can't capture for you on this blog posting is the intoxicating fragrances throughout this garden. They were just wonderful. Each area within the garden seemed to produce its own unique fragrance and the bees and butterflies were just fluttering away. 

One of the walking pathways in the gardens led us right to the base of the Anacostia River. So there literally was just about something for everyone to see at the Arboretum.

Friday, July 10, 2015

Friday, July 10, 2015

Tonight's picture was taken in June of 2009. Mattie was in the clinic of the Hospital and playing at the art therapy table. With him was Katie, one of his HEM/ONC nurses and Jocelyn, his good buddy who was also battling osteosarcoma. If you look closely you will see that Mattie designed an alligator that day out of a large wooden clip and decided to catch my finger in the alligator's mouth! We still have this alligator on display in our kitchen! He is attached to my copper pot rack and stares at me with his beady eyes. 


Quote of the day: None of these parents believed that their child’s death was a good thing. They would have given up all their new found activism, insights and altruism, their re-ordered sense of what really matters in life, to have their child back. ~ Richard Tedeschi (psychologist who coined the term post-traumatic growth)

My friend in cancer sent me an article entitled, The Science of Post-Traumatic Growth (PTG). This is a field that came about in 1995. The term itself is not to be confused with post-traumatic stress disorder [Post-traumatic stress disorder (PTSD) is a mental health condition that's triggered by a terrifying event — either experiencing it or witnessing it. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event.] According to the University of North Carolina-Charlotte's Post-Traumatic Growth Research Group, where Richard Tedeschi practices, post-traumatic growth is defined in the following manner:

What is post-traumatic growth? It is positive change experienced as a result of the struggle with a major life crisis or a traumatic event. The idea that human beings can be changed by their encounters with life challenges, sometimes in radically positive ways, is not new. The theme is present in ancient spiritual and religious traditions, literature, and philosophy. What is reasonably new is the systematic study of this phenomenon by psychologists, social workers, counselors, and scholars in other traditions of clinical practice and scientific investigation.

After experiencing a traumatic event, people often report three ways in which their psychological functioning increases:

1.      Relationships are enhanced in some way. For example, people describe that they come to value their friends and family more, feel an increased sense of compassion for others and a longing for more intimate relationships.

2.      People change their views of themselves in some way. For example, developing in wisdom, personal strength and gratitude, perhaps coupled with a greater acceptance of their vulnerabilities and limitations.

3.      People describe changes in their life philosophy. For example, finding a fresh appreciation for each new day and re-evaluating their understanding of what really matters in life, becoming less materialistic and more able to live in the present.

The article opens up discussing Candice Lightner. Her name may not ring a bell with you, but I bet MADD does. Candice lost her daughter to a hit a run drunk driver in 1980, and this horrible tragedy inspired her to advocate and create MADD, an organization which has saved more than 300,000 lives so far. The point of this very meaningful opening paragraph was to show the reader that out of trauma and tragedy can come growth and great change. Though I do not think this article highlights this well, other Post-Traumatic Growth articles do mention that none of us who survive a trauma sit down and think.... 'gee I am happy I experienced this great loss so that it will raise my awareness and I can now achieve some sort of higher level of growth!' As the research does point out, NOT EVERYONE who experiences a trauma also experiences post-traumatic growth. Therefore expecting such growth to happen also puts ridiculous pressure on a person who is already managing a great deal. 

Do I suspect that growth happens for other reasons? Yes. It happens in my opinion for protective purposes. If we do not find a mechanism to invest in the world that is positive, then what is there? For Candice it became creating MADD and helping educate communities about drunk drivers, in order to help save lives and try to prevent other tragedies like her daughter's from occurring. For Peter and I, we have Mattie Miracle. If you don't direct your issues into something positive, the issues have a way of taking over. It is that simple. If you want to put a name on it, as post-traumatic growth, well okay. However, for some of us the growth is linked to post-traumatic stress, and it is hard to separate the two. They are constantly at odds with each other.  

Nonetheless, I wholeheartedly agree that after Mattie's cancer and death, I am no longer am the person I was before and the three factors listed above are spot on. How I view relationships have changed, my views of myself and life's vulnerabilities are clearer, and most definitely my philosophy on life is completely different. 

All of these things combined made it very easy to walk away from the life I led before. I could no longer teach, work with students and at times deal with a "healthy" population, and for the most part I do not like thinking, talking, or planning for the future. I don't even like thinking months in advance. With Mattie's cancer I had to live in the moment, and with the loss of Mattie that seems to be the mode that works best for me.

The Science of Post-Traumatic Growth:
http://www.livehappy.com/science/positive-psychology/science-post-traumatic-growth

Thursday, July 9, 2015

Thursday, July 9, 2015

Tonight's picture was taken in June of 2009. We were at my friend Christine's house and celebrating Mattie's seventh birthday. This was Mattie's second birthday party that year, because his actual birthday was celebrated in the hospital. Mattie was a huge fan of roaches. Most likely because he knew how much I despised them! So as you can see Mattie had a cake in the shape of a roach and Christine's husband, James, even purchased a roach costume for the event and brought Mattie's cake out dressed as a giant roach. Mattie was STUNNED and had a HUGE smile on his face. In honor of Mattie, James wore this costume once again at our Foundation Walk in 2014!



Quote of the day: Why should society feel responsible only for the education of children, and not for the education of all adults of every age? ~ Erich Fromm


Prior to Mattie developing cancer, I had the opportunity to educate young minds. Of course when we think of young minds, we tend to think of children in elementary or secondary school. Naturally teaching these age groups is crucial, but I think learning at any age is important and teaching adult learners is also a skill. It is a skill because adult learners typically are independent thinkers, they are motivated by different things, they have the ability to analyze a problem in-depth and from different perspectives, but it is not unusual for the adult learner to challenge the instructor on differences of opinions. It takes a certain level of confidence, preparation, and command of a classroom to manage these dynamics. For the most part, after Mattie died I have never looked back about not teaching. The only true aspect that I miss about education is my students. I heard from two of my students today, which is why I am bringing this issues up. I just learned that one of my students became the head of guidance of a large public high school in Maryland. I am very proud of her. This particular student stays in touch with me and even comes to our Foundation Walk each year with her family. 

The second former student of mine, got her Ph.D. over a year ago and is a professional herself now! She wrote to me to congratulate me on "my book." A book she had just received a copy of at the university she is teaching at! At first I had NO IDEA what she was talking about, but then as she continued telling me about the subject matter, I knew exactly what she was talking about. When I was getting my doctoral degree, the experience was so challenging that I began advocating to help others through this horrific hazing process. I submitted many professional conference proposals on this subject matter, and they were accepted throughout the country. I presented this topic on how to survive the dissertation process with two of my mentors from the university. When I tell you these sessions at national conferences were standing room only, I am not kidding. Students in attendance would beg us to write a book! So one day my mentors said to me..... you are writing conference proposals, we need to turn this into a book! So I agreed with them. However, around the time this brainstorming was happening Mattie got cancer. 

My mentors ran with the idea and as you can see they did a beautiful job with what I consider my brainchild. They dedicated the book to Mattie and even incorporated my writings that I did with them when Mattie was well into their book chapters. I was no help to them in the publishing of this book during Mattie's battle, but it was a true gift to see this book in its final format in 2010. I almost forgot about this book until Sara wrote to me today. You can see a preview of the book below.

Selecting and Surviving a Doctoral Program in Counseling

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

Wednesday, July 8, 2015

Wednesday, July 8, 2015

Tonight's picture was taken in the Spring of 2006. Mattie was in Margaret's preschool class and I remember she sent me this photo of him in her classroom. Apparently he and his buddy Zachary were wrapping each other in paper. I of course was not surprised, Mattie loved paper, tape, and all sorts of things like that. The running joke in that classroom that year was that Mattie went through the classroom's colored tape supply I believe within the first month (or three months) of the school year! He literally taped the entire wooden loft in the class. They then has to talk to Mattie about the art of using tape. The art of Mattie, there was just no telling what Mattie was going to get into and create. 



Quote of the day: Two people that have the same wants are two people that should be friends. ~ Shannon L. Alder



Tonight's quote reflects how I feel about childhood cancer... it has a way of uniting people. People who have never met one another, people who have absolutely nothing else in common in some cases, and people who do not share a Country of origin. The other day, Peter uploaded a video of the parent perspective speech that I delivered at the Institute of Medicine workshop in March in Washington, DC to his Facebook page. One of our friends on Facebook, who also lost his son to cancer, happened to like the video and he told me he was going to share it with his international community. I was very touched by his gesture. 

Today, to my surprise we received an email from a professor of linguistics from Italy. She lost her nephew, who was only a year old to leukemia. Of course the fact that she lost her nephew to this horrible disease was terrible enough, but the way in which he died and what this family experienced was another psychosocial nightmare of GRAND proportion. This child was preverbal (being 12 months old) and therefore he was not yet talking. He did not have words to describe his pain, what he was feeling and he could not give words to his symptoms and the side effects of the medications. In addition, because he was such a young child, his doctors felt he did not understand what was going on and therefore did not need to have a voice or need to be comforted, have things explained to him, and worse they refused to allow the family to help this child express how he was feeling through non-verbals. In all reality from my perspective every aspect of this case sounded inhumane and unethical. Worse this family now is left knowing that this 12 month old was forced to die in his PICU room ALONE, without family by his side, as this was the hospital's policy. Do I have to tell you how saddened, frustrated, angered, and upset this family is over this child's death? 

This child died five years ago, and the pain remains very fresh. I understand this very well. This professor has devoted her life to her nephew's memory and she wrote to me today because my recorded speech at the Institute of Medicine resonated with her. She liked my psychosocial message and she wanted me to look at her conference poster she was presenting today in Italy. Her research focuses on giving children in pain a voice, particularly children who are non-verbal like her nephew. Clearly this is accomplished through touch and non-verbals in order to assist children in understanding their medical environment. Isolation and abandonment are never acceptable or ethical and thankfully she has made it her mission to educate others about giving voice to pain.

After you lose a child to cancer, many of us could have easily just turned inward, or have given up, remained angry, and walked away. There are days we may feel like doing this, but then we remember our child and this re-ignites our passion and it drives us forward to make a difference and to help others. 

What is for certain however, is that the our sharing of minds today had a way of uniting us, despite the fact that we really did not know each other. We survived childhood cancer and that trauma enabled us to speak the same language despite that fact that Italian is her primary language and mine is English. It did not matter. We got each other immediately and the fact that I understood what she was expressing, she felt that I gave her a huge gift. TO BE HEARD AND UNDERSTOOD! I could feel it all the way across the Atlantic! 

Tuesday, July 7, 2015

Tuesday, July 7, 2015 -- Mattie died 304 weeks ago today.


Tonight's picture was taken in August of 2007 in San Diego, CA. Mattie was visiting one of his favorite places..... Legoland. As you can see the character on the bench with us was made totally of Legos. Mattie enjoyed every aspect of the park, from the Legos to the rides. In fact, Mattie rode on every roller coaster ride they had there and also got his Lego driver's license there which still hangs in his room. Mattie was very proud of that license, which featured his photo on it...... so it looked like a real license.


Quote of the day: A garden requires patient labor and attention. Plants do not grow merely to satisfy ambitions or to fulfill good intentions. They thrive because someone expended effort on them. ~ Liberty Hyde Bailey

I have been glued to the computer for so many days at our home, that the fact that I ran around town today to run chores was such a welcomed change. It felt wonderful not to be at my deck, in front of a computer but to be out and about, and getting fresh air. It was delightful and the weather was very hot and the sun was out. So it was a great weather day for me. 

Going to Home Depot may not seem like a highlight to most people, but I love going to their garden section. I had a wonderful conversation with one of their horticulturalists today and learned about hibiscus. She studied in Hawaii on a hibiscus farm and I learned about how to care for them and the special nature of this purple variety that I bought. I actually went to Home Depot to purchase a hydrangea. But after a long talk with this consultant, I opted for this beautiful hibiscus which will be coming inside in the winter. What I love is hibiscus attracts butterflies, bees, and hummingbirds! Purple hibiscus are more rare than red and yellow ones and take 15 or more years to breed. So we shall see. I have a special place that we want to plant this on our deck. Each time we plant something by our front door it dies, so it has to be the "right" plant! We have TRIED practically every type of plant. She thinks the hibiscus will work. 

Monday, July 6, 2015

Monday, July 6, 2015

Tonight's picture was taken around July 4th in 2009. That holiday weekend we took Mattie with our friend's family to a local resort. The thinking was to try to give Mattie a more normal experience away from the hospital and usual medical routine. Of course for us, we were still pushing meds, flushing his lines, and maintaining his daily routine but in a different location. However, the reality of childhood cancer is you may move locations but the problems follow you where ever you go. Mattie's issues were very pervasive and deeply emotional as this photo may indicate to you. Peter and I tried our best to cover the issues from those we were with, but it wasn't easy as Mattie was not happy being around the other children and was deeply depressed that weekend. The more time he spent with others who were not like him the deeper he fell into depression. After this scene here, Mattie grabbed a hold of me and basically told me he wanted to leave immediately. Not just to return to our hotel room, but to leave altogether and go home. Which is what we did. Of course I did not report this on the blog that night. Which I will write more about below. 


Quote of the day: We do not remember days; we remember moments. ~ Cesare Pavese


Last week when we met with a Washington Post reporter, we were asked to provide her with key dates from the blog that she should refer back to and read. Mostly likely dates that we felt were significant to our story and that would help give context to our story as to why the Foundation developed a mission focused on psychosocial care. 

I spent some time last week delving through the blog, going through the course of a year's cancer journey. Which I have to admit was very emotional. I remember aspects of the pain, but reading the day to day journey brought me right back to 2008. Peter and I know many of Mattie's key dates in our heads as they will forever be ingrained in us, however, reading through my descriptions of some of these dates and the occurrences of what happened on each of these days really caught my attention..... almost six years later. Why? Not because I couldn't believe we survived this! Not because I couldn't believe that I forgot what transpired! ON THE CONTRARY!!! What disturbed me was HOW I REPORTED THEM!!!! 

In some cases, as I read through the blog, I noticed that I did not report things as ACCURATELY as they happened. Now you could say that maybe my memory has failed me and what I wrote in the blog is really what transpired! Sure that could happen.... but that isn't what is the case here. I know darn well what happened in each instance.. as Pavese's quote so aptly points out tonight. I remember moments and episodes in time as if they are trapped in my mind! I can play them back over and over. Therefore when I read how they were reported on the blog, I knew I wasn't reporting them accurately. But I guess because so many years have GONE by I forgot WHY I chose to report these episodes this way or even why I had to do this!!!

I surfaced this issue with Peter because it truly bothered me. I view the blog as an excellent resource for psychosocial stories and yet some of my best stories and examples are NOT captured on the blog. They aren't captured because at the time I had to protect us, our community who was supporting us, and I also knew that our medical team who was treating us was reading the blog. So I had to be careful how and what I was writing in some instants. When you think about the intense stress we were under, the fact that I had the where with all to even give this thought was amazing in and of itself. I knew that what I wrote could have ramifications on us and how Mattie would be treated. 

I will give you an example, if you are confused by what I am talking about. In the first week Mattie was treated, his psychosocial staff did not like my emotional response, or LACK thereof to Mattie's diagnosis. They wanted to see me crying and hysterical. I was too composed and focused for them. They also did not like the fact that I wouldn't leave his side and was always in his room. They took it upon themselves to deem that I needed a break. So one day, one of the social workers (not the social worker assigned to work with our family) met with me and walked me over to the campus hotel and checked me into a room, despite me refusal. She told me I needed space from Mattie and I had to take care of myself! It was almost hysterical..... I had to care for myself while my son is getting his first round of chemotherapy! Are you finding this as funny as me???? She wasn't listening to my needs, nor did she make the effort to understand the closeness Mattie and I shared prior to his cancer. If she had, she would have realized there would be no way I would leave him alone in a hospital, to manage chemotherapy! In any case, after she checked me into the hotel, I thought about it for two minutes, got very angry, and then returned the key to the hotel and never returned there. I then reported the social worker to the head of oncology and demanded an apology. I was livid. I felt as if no one should be judging me, my family, or worse my emotional reactions. If they wanted to see an unstable parent...... she saw one in full force. I remember this episode as if it were yesterday and yet I did not report any of it on the blog. All I wrote in that night's posting was that...... we had a lovely visit from a social worker today, who was concerned about us and offered us a hotel stay on campus. 

I now recall that I used to joke with people that the blog doesn't always tell the whole story. It does give a good picture of the hell we lived through, but I did have to spare many of the truths because they were too harsh for people to hear. All I know is Mattie's cancer was traumatic for us, and the blog can remind me of the memories of certain events, occasions, and experiences. The blog can instantly take me back in time, as can a photograph, and the details do not need to be presented to me, they are just ever present in my mind. 

Sunday, July 5, 2015

Sunday, July 5, 2015

Tonight's picture was taken in January of 2009. Mattie had already completed both of his two major limb salvaging surgeries, which meant that all three of his limbs were operated one. He was in his hospital room and though playing on the floor probably wasn't the most hygienic place to be, it was most comfortable for Mattie given his physical mobility issues. It wasn't unusual for us to put down sheets and blankets on the floor for Mattie to sit and play. Sitting next to Mattie in this was Liza. Liza was one of Mattie's favorite child life volunteers, and what was so memorable about Liza to all of us was her voice. She always reminded me of Glinda the good witch from the Wizard of Oz. Someone very sweet and kind. 



Quote of the day: Take up one idea. Make that one idea your life - think of it, dream of it, live on that idea. Let the brain, muscles, nerves, every part of your body, be full of that idea, and just leave every other idea alone. This is the way to success. ~ Swami Vivekananda


I am not sure where the holiday weekend went!? For both of us, it was spent glued to a computer. Peter in front of our desktop and me to my laptop. Each of us were working away at the design of our new Foundation webpage. The irony is that we had two different groups of people offer to help us with this design. The first person was a professional web designer. He created a shell for us, but I could see this wasn't going to be a template I could manage and therefore that was going to put me right back into the place I currently am out. Whatever platform we us, it has to be easy, so I can maintain it in order to keep the site fresh, active, and current. Otherwise, the site will look old, static, and unfortunately will not capture all the wonderful accomplishments and activities we are involved in. So that option quickly dissolved. Then the next group of people who offered to help us, actually got further than the first. They created a template for us that is easy to use and got us started thinking about layout, format, and content. Which really gave me the push I needed to get this going. 

I am not sure I really wanted to devote this weekend to this project given how I am feeling, but since Peter was motivated and wanted to take this on, I got on board. Peter has really done a stellar job with the site and unlike the first website, this site is our creation together. 

As I was working on one of the content pages for the website today that focused on our snack cart at the hospital, I got the bright idea to show photos of our candy drives over the last four years. I got a chuckle out of how the candy drive has grown from 2011 to 2014. In 2011, I could count each piece of candy, which I certainly can't do now with a collection totaling 4,000 pounds. 

This illustrates our April item drive from 2013 to 2015. This drive is run every April in honor of Mattie's birthday. All the toiletries from this drive stock the free snack and item cart that Mattie Miracle sponsors at MedStar Georgetown University Hospital. This cart revolves around the inpatient pediatric floor three times a week and helps to meet the needs of families in the hospital who are caring for a child with a long term or life threatening illness. 

Saturday, July 4, 2015

Saturday, July 4, 2015

Tonight's picture was taken in July of 2003. Mattie was one year old and this was his first trip to the Outer Banks in North Carolina. Mattie was not in love with the whole notion of the sand and surf. He did not like the feeling of the sand in his toes or the crashing waves on the shore. After the first day exploring the beach, we never were able to go back during trip because Mattie was that intimidated. However, we did not give up. We did return subsequent summers and with each visit Mattie got a little more comfortable. So much so, that in the end Mattie could spend hours building and creating in the sand! 



Quote of the day: Everything that is really great and inspiring is created by the individual who can labor in freedom. ~ Albert Einstein


Peter and I spent another day working on our Foundation's webpage. It is a very hard task redesigning the page from scratch and I can see this will take quite some time to do this project correctly. But I am happy we are making progress and it is moving in the right direction, I just did not realize this was the task that would be absorbing our weekend. With the Foundation, there is never a down moment or lack of work. Which is what it is like to run your own company. If you are not working, neither is it! 

At 9pm, we finally took a break for the day, and walked outside to see the Nation's fireworks. This is the one perk of living in the city. We can easily see the fireworks, without having to travel anywhere, or to fight crowds or traffic. 

This is one of my favorite types of fireworks.... to me it looks like a flower. 

There were many wonderful fireworks this year, including multi-colored fireworks, smiley faces, and one that said USA.

There were even planet shaped fireworks!