Saturday, August 4, 2012

Saturday, August 4, 2012

Tonight's picture was taken in June of 2008. We went to Roosevelt Island, with Mattie's remote controlled boat in hand. Peter and Mattie waded out into the Potomac River to sail the boat. What I find particularly ominous about this picture, was in the distance was Georgetown. This picture was taken a month before Mattie was diagnosed with cancer, and after his diagnosis, we practically lived at Georgetown University Hospital. To me, this picture is almost like a premonition of what was to come.



Quote of the day: In life, it is never the big battle, the big moment, the big speech, the big election. That does not change things. What changes things is every day, getting up and rendering small acts of service and love beyond that what's expected of you or required of you. ~ Cory Booker


My friend Charlie sent me today's quote and it absolutely resonated with me. In reality it is the small acts, the unexpected kindness, that truly changes things. But when I say things, I specifically mean how we feel about ourselves, the world, and at times our future. The one simple act of kindness has a way of impacting a day, which can impact a week, and so on. The impact can affect the giver as well as the receiver. I will give you an example. This week after visiting my doctor's office, I was walking down the hallway to get on the elevator. There were others around me, but amongst us was also a woman who was blind. I could see, from all the way down the hallway, that this woman was having trouble finding the elevator bank and was bumping into the walls. NO ONE helped her. I realize there maybe many explanations for this.

I remember when I was an educator, I always had a colleague of mine who is blind, come to talk with my students about working with clients who are visually impaired or blind. It was ALWAYS a very powerful lecture. What I learned from my friend Bob is not all people who are blind want help, and most certainly one should never lay a hand on a blind person to lead them somewhere without first asking. As I was watching this woman, I assessed that I couldn't just let her fumble in the hallway, so I went up to her and asked her if I could assist her. She was very eager to receive my help and then I asked her how she wanted me to direct her to the elevator. I gave her the control to decide whether she held onto me or I held onto her. I certainly did not start my day with the notion that I was going to have a "big moment." This moment and interchanged just happened and presented itself, but assisting this woman in many ways helped both of us.

This evening Peter and I went over to Ann's house to visit her cousins who are in town from Massachusetts. One of Ann's cousins, I am very fond of and we exchange emails daily. She recently lost her husband to a cancer battle, and though she is grieving a husband, and I a son, there are many aspects that overlap.

I would like to share a photo that Ann sent to me. Her friend is participating in the Pan Mass Challenge. The Pan Mass Challenge has been around for 33 years. During that time it has raised more than $338 million for the Dana Farber Jimmy Fund, an organization that helps battle cancer through research and treatment. In 2011, the PMC donated 100 percent of every rider-raised dollar directly to the cause. The PMC generates half of the Jimmy Fund's annual revenue and it is Dana Farber's single largest contributor. This is a picture of the t-shirt Ann's friend wore. I was surprised and honored to see Mattie's name on it.  Mattie was thought about and remembered in Boston this weekend!!!

Friday, August 3, 2012

Friday, August 3, 2012

Tonight's picture was taken in May of 2008. This was Mattie's kindergarten class' end of the school year party held at a local park. In this picture, Larry, one of Mattie's teachers was opening up his class gift, and Mattie and the other kids were chatting, capturing the attention of the camera, and having fun together. Mattie's classmates are moving into fifth grade this year, and it is hard to accept that Mattie never made it past kindergarten.

Quote of the day: One word frees us of all the weight and pain of life; that word is love. ~ Sophocles


In my mind, I am permanently stuck as a parent of a seven year old. As Mattie's classmates grow older and move up a grade, I get disoriented, because in my mind I am still back in kindergarten, and expect them to be there too. Peter and I missed First through Fourth grades with Mattie, and therefore we will never know what his favorite subjects were, what he liked best in school, and overall how he would develop as a person over time. To me Mattie will always be seven! As August approaches, parents begin focusing on school resuming in September, another aspect of life I am no longer a part of. But it isn't as if I never experienced the first day of school with Mattie, I had, and that is what makes this aspect of loss part of my overall grieving process.

Despite being a bereaved mother, at the core of who I am, is a person who has always listened to people and I have been able to draw people out of their shells to reveal their inner most feelings. For as long as I can remember, people came to me with their problems. I have been likened to Lucy in the Peanuts comic series, I just did not have a booth or a tin can accepting coinage! In fact, in seventh grade, my neighbor who sometimes picked me up from school would get frustrated with me because I never came out of school on time. Why? Because typically kids wanted to talk to me. Not that I had solutions to their problems, but I imagine they liked talking to me because I always listened and did not judge them for what they told me. In a way, I had an interaction today which reminded me of the skills that define me as a person. Since the story is not mine, nor do I wish to reveal who I was speaking with, I will just say that over time I have had the opportunity to get to know this particular woman who is close to my age (also keep in mind this is not a therapy relationship). Each time circumstances bring us together we talk, I have gotten to know her family, and she most certainly knows about Mattie and my experiences with his hospitalization and death.

Recently this woman confided in me, and we find that we have a lot in common, which in and of itself is a blessing. It is always wonderful when you feel someone else understands you and how you are feeling. Today this woman told me that what she confided to me, she hasn't shared with anyone outside of her family. In fact, when her sister heard she told me, she was shocked. I have to imagine two reasons explain why this woman confided in me. The first is we have developed a friendship over time and second my own experiences with Mattie and my ability to express that vulnerability enables others to let their guard down. Needless to say, our connection with each other is very meaningful and appreciated both ways.

Tonight Peter and I went out to dinner in our neighborhood. After dinner we took a walk around and came across a wonderful Outdoor Sculpture Exhibit literally in our backyard. I have highlighted three pieces which caught our attention!

This outdoor sculpture is entitled, "Curve" by Foon Sham. It is shaped as a large vessel made out of cedar, and it is meant for the spectator to walk inside. When I saw it, my immediate reaction was if Mattie were with us, he would have run right inside. So Peter went in instead.

This work is entitled "Cone Tower #3" by Pat McGowan. She basically repurposed plastic traffic cones into a massive arc spanning someone's front yard.


















This piece is fascinating and makes you literally want to stop and climb on and up!!! It is entitled, Alfalfa Root at 4.5 months old by Dalya Luttwak. The idea to sculpt roots came to her after a tree fell on her car. Tak­ing pho­tos of the acci­dent for insur­ance pur­poses, the image of the unearthed roots stayed on her mind and became a favorite topic of artis­tic exploration.

Thursday, August 2, 2012

Thursday, August 2, 2012

Tonight's picture was taken in August of 2008. Mattie was outside, on the hospital grounds getting some fresh air with his cousins, who were visiting him from Boston. Mattie was showing them the rocks that surrounded the medical library. Mattie LOVED these rocks. So much so, that he actually pocketed a few of them. Typically I wouldn't allow Mattie to take things that did not belong to him, but somehow these rocks made him happy and he liked collecting them. Which in essence would motivate him to get out of his room and interact with the world, which at times was a feat especially when he was deeply depressed and sick from treatment. We have about three hospital rocks at home, and in fact, one of them is so BIG, we continue to use it as a door stop to prop our front door open in the spring time.


Quote of the day: The true meaning of life is to plant trees under whose shade you do not expect to sit. ~ Nelson Henderson

Peter and I had a meeting today with one of the owners of Molecule Salon. As many of my faithful readers know, Molecule held a fundraiser for the Mattie Miracle Cancer Foundation in March of 2012. The fundraiser was successful and we truly appreciated the owners of the Salon taking on the entire burden of planning and hosting the event. Event planning and coordination are challenging jobs, and it is very hard for me to do this for the Foundation when I am juggling multiple events, interfacing with supporters, and managing the daily operations of the Foundation. Which is why Peter and I were thrilled to have Molecule approach us with their ideas, and we were even more amazed that they wanted to run with the idea themselves. So to me tonight's quote reflects upon the owners of this Salon, they are very giving and concerned for children who are sick and they want to help. In fact, they want to help on the condition that we do not acknowledge them in promotional material or verbally in any way. Naturally, you can see how well I abide by this request. Certainly even if their kindness was a one time event, is would be greatly appreciated. But today, we learned that the Salon wants to help us coordinate another fundraiser. This one being VERY different from the last one in March. This fundraiser is a bit more complex to plan, yet if we can pull this off, it would be very meaningful and would highlight the psychosocial issues and support that children and families need to cope with cancer. I have already contacted Linda, Mattie's Child Life Specialist, about this event, because I will need her support to coordinate what we have in mind. As the plans unfold, I will be sharing more.

Wednesday, August 1, 2012

Wednesday, August 1, 2012

Tonight's picture was taken in August of 2008. Mattie was adjusting to life in the hospital that first week, and with that, we discovered he liked painting on large sheets of paper. This was Linda's (Mattie's Child Life Specialist) idea, and she set up a painting station right in the hallway of the PICU for Mattie. Anything to get out of the room was a blessing, because when we first entered the hospital there was NO child life playroom. That room was a very needed addition to the pediatric floor, and it did help to motivate Mattie to get out of his hospital room, even on very bad days. In the midst of Mattie's fear about being in the hospital and getting poked and prodded, I find it fascinating that he would choose to paint a sun and the earth. The sun was bold and happy looking. Which even with cancer, these were Mattie characteristics that always shone through. The stress we all lived with was beyond overwhelming and intense, which is why Linda will never be forgotten. I could tell she appreciated Mattie early on, was able to engage, understand, and advocate beautifully for him. So from my perspective if Mattie had moments of happiness in the hospital it was because he had friends like Linda there who made a difference in our whole family's life.


Quote of the day: Recall as often as you wish; a happy memory never
wears out. ~ Libbie Fudim

Today I had two appointments with doctors and landed up visiting Virginia Hospital Center and Georgetown University Hospital. At the cardiologist's office, I had a stress test and two echocardiograms. The echocardiogram uses sound waves to take pictures of the heart before and after exercise. I have never done a stress test before, but the test does live up to its name. I am not sure the exercise portion of the test bothered me as much as the people performing the test. Apparently I was the lucky one today because in the stress test room, I had four people with me. Two were techs and two were nurses. Typically there would only be one tech and one nurse performing such a test, but there was training going on, and I was the guinea pig. Needless to say their banter with each other was driving me CRAZY! Mind you to have this test performed, you basically have to take everything off from the waist up and wear a skimpy covering. As they were figuring out how to put the electrodes on my chest, I literally wanted to throttle the two males in the room. Finally, as they were figuring this all out, I literally decided to ask them a group question. I asked each of them to raise their hand if they personally experienced a stress test. Guess what?! Not one of them in the room ever had a stress test, a test in which they unfortunately put hundreds of people through a week! I told them I was shocked and that in my profession, no mental health practitioner could ethically administer a test/assessment without first taking it themselves. They looked shocked and embarrassed, because here they are, talking a mile a minute, being insensitive and they have NO idea what level of patient anxiety is sitting before them on the table. Having to take this test is indeed anxiety provoking because you just aren't sure what they are going to find, and in addition, the test itself taxes your heart for 10 to 12 minutes quite intensely.

The male nurse and I were not on the same wavelength. He was the trainer of the other nurse and when I asked if anyone ever had a stress test, his actual response was..... "I go on the treadmill all the time at the gym!" As if these two things are equivalent!!! Are you kidding me?! That truly was his response, which in my book was an even more insensitive response than........... NO I have never taken a stress test before! I continue to be perplexed by the medical profession, and what today tells me is so many of them are checked out, going through the motions, and are insensitive to patients because they have not experienced some of the things they are performing on their patients. If they did, the behavior would be VERY different! Case in point, I recall last week when taking a CT scan, the tech was incredibly empathetic. She was because years ago she too had a chest CT with contrast, and the contrast scared her so much, that she remembers it vividly today (CT contrast can make you feel like you are on fire, with the sensation that you are going to the bathroom on yourself, and in the chest region you feel paralyzed almost for a minute!). Which is why her personal insights help guide how she interacts with and treats her patients.

The actual stress test involves a treadmill. While on the treadmill you are hooked up to about 20 electrodes. Throughout the test, they are constantly raising the inclination of the treadmill and the speed at which you are walking. By the time they are finished with you, you feel like you are briskly walking up a very sharp incline. So much so, that if I let go of the handle bars, I would have gone flying! I did not like the inclination at all, and when I complained about it, the male nurse let me know that an 80+ year old woman completed the test this morning without complaining. Again, really?! If he thinks I am stupid enough to think that he put this 80+ year old through the same paces he did with me, than I don't know what to say. Nonetheless, his comment was nasty, and I let his supervisor know it. This is not the time to be snappy and nasty to patients when they are trying their best to complete a test.

The highlight of my day however, was going to Georgetown University Hospital and meeting with the VP of Patient Advocacy. Julie is an amazing professional who helped Peter and I on numerous occasions at the Hospital. Today's meeting was to get Julie's help with an initiative I am working on with the parent advisory board at the Hospital. Mattie is no longer in treatment and I could easily walk away from the whole cancer thing, but I try to use the experiences we had at the Hospital to help shape the experience for future families, so that perhaps 1/10th of what they are going through will be a bit smoother or less stressful. 

Tuesday, July 31, 2012

Tuesday, July 31, 2012 -- Mattie died 151 weeks ago today.

Nothing is wrong with your eye sight, tonight's picture is blurry. Despite its lack of clarity, this picture is very meaningful to me. I took it in August of 2008, and it was blurry because I was trying to walk and take a picture at the same time. Mattie had just begun treatment, which was why he had a full head of hair in the photo. However, a lot was going on in this picture. Mattie was headed to have a scan and fortunately we were accompanied by Linda (Mattie's child life specialist) and Debbi (Mattie's sedation nurse angel). Sometimes I wonder what was worse battling the cancer, or dealing with all the scans, which were done on a periodic basis to determine the effectiveness of treatment. Mattie's scan results typically revealed bad news, which maybe why the whole process of scanning brings about an emotional tidal wave for me.


Quote of the day: The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen. ~ Elisabeth Kubler Ross


Our friend Tim sent us today's quote. Tim saw this quote posted near a nurse's desk at Georgetown University Hospital, but when he read it, Peter and I came to his mind. It was a lovely way to start a Tuesday, knowing that someone in our Georgetown family was thinking of us. What Tim was telling us is that he considers us beautiful people. As Kubler Ross pointed out, beautiful people do not just happen. I agree with her wholeheartedly, but of course she wasn't talking about superficial beauty, which is fleeting anyway, she was talking about the more permanent beauty that lies within. Which from my perspective is the beauty that defines a person and when it radiates out, it impacts others. Can one achieve this inner beauty without having experienced suffering, loss, and struggle? Kubler Ross would say, NO!

Naturally there are many ways we each achieve our own inner beauty. Perhaps my ultimate way was by having Mattie for 7 years in my life and then losing him to cancer. But I am not sure. Nonetheless, it is hard to think of one's inner beauty, when emotionally being ravaged by the aftermath of cancer. Mattie's battle has left me hollow, angry, depressed, and anxious. Not a great way to live life, and yet how I go on living with these feelings, and with the visions we experienced of Mattie sick and then dying is an interesting dilemma. In all reality, it is a shattered life that forces one to be introspective, to understand the pain and feelings of those around me, and to some extent by helping others, I define myself and my place in my new world. So it appears that being vulnerable maybe a crucial part in the quest to finding inner beauty.

Today I returned to my zumba class. My teacher has been on vacation with her family, but when she sent out an email that class was resuming this week, I knew I was going. Zumba gets me moving, out of our home, and talking to people. Which in turn, gives my day some normal structure, which motivates me to do other things. Later in the day, I went to the mall, and while there I bumped into a former student of mine. She introduced me to her three year old daughter and we chatted for a while. This student is part of Team Mattie, so she is very familiar with the battle I endured, and yet teaching seems like a completely different part of my life now. It still is a part of me, but I am no longer the person I was when I was teaching. Despite these changes, the one thing I loved about teaching were my students. They were bright, sensitive, inquisitive individuals, who wanted to learn and ultimately wanted to help people. I would like to think that my days teaching, and helping nurture and cultivate students contributed to this inner beauty that Kubler Ross was talking about.

Monday, July 30, 2012

Monday, July 30, 2012

Tonight's picture was taken in August of 2008. That was the month Mattie began chemotherapy, and with the diagnosis of cancer Mattie's world was transformed. Suddenly whether he learned to read, understand math, or play sports all seemed irrelevant and TOTALLY unimportant. I have to say, at least for us, art became our saving grace. We united on it as a family, and it really engaged Mattie's mind, body, and heart. During Mattie's treatment, he created many boxed structures. So much so, that Mattie's hospital family saved all sorts of boxes for him so that he could build, design, and basically stay active. If it weren't for these projects, Mattie would have totally checked out of living emotionally. Ironically, I can no longer look at a box the same way anymore. To me a box is so much more than a receptacle for storage or shipping things. Because of Mattie, I now look at boxes as having all sorts of possibilities.


Quote of the day: You know a heart can be broken, but it keeps on beating just the same. ~ Fannie Flagg

There is a great deal of truth in this quote. In fact, recently I was emailing with a mom who lost her child ten years ago, and in her email she stated that she thinks it is quite possible to die of a broken heart. That may sound physically impossible or even ridiculous. But I know better now. One's emotional state can wreck havoc on one's biological state, and the death of a child, can and does set off a chain of all sorts of negativity, which I believe does impact one's physical health.  

Despite the heat, I walked about four miles today. I walk for my mental health, not necessarily my physical health. I find getting outside, in fresh air, and being around people very important. While walking, I had the opportunity to watch two summer camps, a baseball and a soccer camp practicing outside. The boys were all around Mattie's age or perhaps a year or two older. Needless to say, it is hard to accept that all these children are outside playing and developing, and Mattie is no longer. Observing this made me reflect on a passage from The Guernsey Literary and Potato Peel Pie Society, when Amelia reflected upon the loss of her son in war: "Life goes on. What nonsense, I thought, of course it doesn't. It's death that goes on; Ian is dead now and will be dead tomorrow and next year and forever. There's no end to that." While most parents are working with their children in the present, in the here and now, Peter and I are working in the past. It isn't good to live in the past, but what happens if we do not live in the past? Then it means we to some extent do not carry Mattie's memory into our present and future.

As my readers know, on Saturday we went to an exhibit of the Titanic. Since posting about this museum exhibit on the blog, I have learned that my friend Helen's high school teacher was a survivor of the Titanic, and my friend Carolyn met and got to know Dr. Ballard, the oceanographer who discovered the Titanic's remains in 1985. Talk about a small world! I told Helen I want to hear more about her teacher, and Carolyn told me today that Dr. Ballard and I share something in common..... the death of our sons. Dr. Ballard apparently lost his son 20 years ago, yet Carolyn mentioned that this loss is still a very significant part of his life. Which of course validates my feelings and thinking! What this also tells me is we truly have no idea what others are living with unless we truly scratch the surface and spend time understanding and hearing about their experiences.  

Sunday, July 29, 2012

Sunday, July 29, 2012

Tonight's picture was taken in July of 2008, about a week after Mattie's diagnosis. We were all in the library room of the pediatric Lombardi Clinic discussing Mattie's treatment plan. While Peter and I were talking to Mattie's doctor, Mattie was with Jenny and Jessie (his art therapists) creating a "bone bug" out of clay. You can see this clay bone bug on the floor in this picture, and Mattie was in the process of stomping on it to kill it. This was art therapy at its best, because this exercise was designed to help Mattie visualize what chemotherapy would do to his cancer. Chemotherapy would act like his foot, in essence stomping out the bone bugs inside him. I wasn't sure how to explain Osteosarcoma to Mattie, but since I knew he related to bugs, I coined the term "bone bugs." A term that was adopted by everyone treating Mattie, and used to help explain his treatment throughout his entire battle.  



Quote of the day: The measure of success is how you deal with disappointments. ~ The Best Exotic Marigold Hotel


Today Peter and I went to see the movie, The Best Exotic Marigold Hotel. I have wanted to see this movie for a while now, because it features two women I love, Maggie Smith and Penelope Wilton. Both women star in our favorite British Miniseries, Downton Abbey. I imagine the plot may not necessarily attract people our age, but it certainly caught my attention, regardless of the movie reviews. When we entered the theatre today, Peter commented that I can certainly pick them. Which means that we were at least 20 years younger than the other movie attendees sitting around us. Again that may trouble some, but not me. In fact, when I see older adults attracted to something, that usually means it is of quality to me. Mainly because like older adults, I am attracted to movies NOT because of special effects, but for a good story. The Best Exotic Marigold Hotel did not disappoint. In fact I LOVED it!

The Best Exotic Marigold Hotel follows a group of British retirees who decide to "outsource" their retirement to less expensive and seemingly exotic India. Enticed by advertisements for the newly restored Marigold Hotel and bolstered with visions of a life of leisure, they arrive to find the palace a shell of its former self. Though the new environment is less luxurious than imagined, they are forever transformed by their shared experiences, discovering that life and love can begin again when you let go of the past.

I am not a retiree, nor can I relate to the developmental concerns that the characters in the movie express, and yet, I related to the movie on an emotional level. One of the characters, Evelyn, in the movie lost her husband to a sudden heart attack. She was then forced to live life on her own, and deal with the financial debt her husband left her. One day she calls her Internet provider to request a particular service change. The representative will not talk to her because the account is not in her name, it is in the name of her husband. When Evelyn explains that her husband died and therefore the representative will have to deal with her, the representative doesn't skip a beat and stayed on script,  never saying she was sorry to hear Evelyn's news. It was a short clip in the movie, but very powerful, because it immediately showed us how in our quick paced and technologically savvy world we have lost the art of being human and connecting on a human level. The beauty of the movie is it caused me to see how at times we are all lost figuratively and yet the test of success is how we deal with life's disappointments. Though this movie featured characters in their 70s, who are trying to figure out what their retirement means to them, to me this movie goes beyond age. Sometimes we all need a change in our surroundings and to connect with others to reveal what lies deep within us, so that we may reinvent ourselves and become re-engaged with the world. Which in all reality is what Peter and I have been forced to do since Mattie's death. We are in search of who we are, dealing with life's disappointment, a sense of emptiness, and an uncertain future. To me there is great overlap between what these retirees in the movie were forced to contend with and what we are dealing with each day. 

One of my favorite lines in the movie, which we are told is an old Indian saying, is, "Everything will be alright in the end, so if it is not, then it isn't the end." A saying that seems to capture the hope we all need to cling to during difficult times. The movie is filmed on location in India, and besides an emotional journey, it also takes you on a journey to a culture very different from our own.

Movie Trailer of The Best Exotic Marigold Hotel:
http://www.imdb.com/title/tt1412386/