Friday, August 10, 2012

Friday, August 10, 2012

Tonight's picture was taken in August of 2007. It was a summer of innocence because the following summer Mattie was diagnosed with cancer. In typical Mattie fashion, he was playing with something that had parts and he had to build on his own. Mattie could easily follow toy building instructions, but he also did not need a guide or map to create. He just understood at an early age how things went together.


Fact of the day: The average number of passengers arriving and departing at London Heathrow Airport per day is 190,100.


My morning began early because my doctor was doing me a favorite by squeezing me in to see her colleague today. When I got to the office, the office staff was not expecting me and therefore we got into a debate about procedures. Mind you I knew exactly what my doctor wanted me to do, since I spoke with her last night. But I could see I wasn't making any headway with her staff. So I decided to comply with them and while complying, I emailed my physician while she was in surgery. Within minutes she responded and said she was leaving the operating room and would see me in five minutes. Within seconds after emailing her, her office staff seemed to miraculous understand what I was saying, and no longer questioned the directions I came into the office with. Amazing on so many levels. What I have learned from Mattie's illness is that you can't be shy or timid with the health care profession. Unfortunately the loudest and at times the most demanding one gets attention.

After I left my doctor's office, I got on the elevator to return to the hospital's lobby. As the elevator stopped on one of the lower floors, a woman got on with myself and another woman. This woman was beaming with excitement and shared her good news with us. She wanted us to know that the testing she did confirmed that she doesn't have cancer. I did not know this woman from Adam, but for that moment in time that did not matter. Because in that moment, all three of us in the elevator were human and we were clapping and sharing in her good news. I found myself smiling and tearing at the same time. In fact, I was profoundly struck by our interaction, and I told her she was given a great gift today and a second chance on life. She agreed with me, but she was visually shaken up from the emotions of waiting for these life altering results. A feeling I know all too well! When the elevator stopped at the lobby level, I could see she was absolutely disoriented from being on over load. She even had trouble getting off the elevator. So I helped her off and assisted her as she navigated back to the cancer institute at the hospital.

As I got into my car, did chores, and finished packing, I found myself reflecting on this woman I met today. Cancer has a way of uniting people, and I have found time and time again that it doesn't matter what your age, gender, race, ethnicity, social economic status, political preferences, and level of education are, when you talk about cancer or the potential diagnosis, a universal human reaction and emotion takes over. 

Peter and I are flying today to London's Heathrow airport. The last time we were in London was for our honeymoon in 1995. In 1995, we went on a land tour of England, Scotland, and Wales. We had a wonderful time visiting each of these beautiful countries. We met many lovely families on our tour and several we still keep in touch with today by letters and emails. So it is my hope that this adventure will be good for Peter and I, since this summer has been very challenging for me so far. The daunting part for me is the flight, and at this point I am not sure who I feel worse for.... me, or Peter who will be sitting next to me! On Saturday, I will be writing to you from Southampton, England. The port home of the Titanic.  

Thursday, August 9, 2012

Thursday, August 9, 2012

Tonight's picture was taken in July of 2006. We went for a walk on Roosevelt Island after a storm, and as you can see a tree fell in the middle of the pathway. Mattie was eager to explore that tree and Peter picked him up and had him sit on it like a horse. Mattie's facial expression was one of caution and hesitation, and yet he did try to smile for the camera. But as his mom, I knew exactly what this particular look meant! 


Quote of the day: The measure of mental health is the disposition to find good everywhere. ~ Ralph Waldo Emerson


I started the day at zumba class, which is always a good start to the day. It gets me up, out, moving around, and talking with people. I am so happy I took a chance and contacted Jenny about her class last summer. My mom introduced me to zumba while we were on vacation, and when I returned to Washington, DC, I was determined to find an instructor. I love to dance, and Jenny being a trained dancer, infuses wonderful dance steps into her choreography. It is great exercise and good for the brain as well.

I spent most of the day doing chores. Though I haven't mentioned this before on the blog, Peter and I are flying to London tomorrow night. We are meeting my parents and going on a cruise of the British Isles which starts on Monday. So stay tuned for a detailed account of our adventures. I haven't been to Europe since 1998, and my enthusiasm for flying and especially flying over an ocean are minimal at best. Since Mattie got sick and then died my fear of flying has intensified. I despise the motion, turbulence, and being confined in a small space with hundreds of people.

Since we will be away for two weeks, I had a great deal of work to do this week to prep the blog for our journey. However, as the evening set in, I realized I better check in with my urologist. She is just one of many specialists in my life. In so many ways, this has been the summer of illness and seeing one physician after another. So tomorrow morning, I will be seeing my doctor before we leave. Not exactly the morning I thought I would be having, but I know it is better to travel with medication than not have it with me.   

Wednesday, August 8, 2012

Wednesday, August 8, 2012

Tonight's picture was taken in August of 2006. If Mattie wasn't playing with Legos or trains, then his other favorite options were tinker toys and remote controlled cars, boats, and helicopters! As you can see in this photo, Mattie made a garage for his remote controlled car out of tinker toys. Mattie was very partial to his creations, and therefore, he wouldn't build them just to take them apart minutes later. No, in fact, many of Mattie's creations stayed assembled for days, until his next big project was underway and he needed our living space for creativity!


Quote of the day: Life is a classroom -- only those who are willing to be lifelong learners will move to the head of the class. ~ Zig Ziglar


I remember when I was living in Boston and going to graduate school, Peter introduced me to victory gardens. I have to admit I had no idea what a victory garden was back then, since I had never seen one growing up in New York and in California. Victory gardens, also called war gardens or food gardens for defense, were vegetable, fruit and herb gardens planted at private residences and public parks in the United States, United Kingdom, Canada and Germany during World War I and World War II to reduce the pressure on the public food supply brought on by the war effort. In addition to indirectly aiding the war effort these gardens were also considered a civil "morale booster" — in that gardeners could feel empowered by their contribution of labor and rewarded by the produce grown.

Why am I telling you about victory gardens? Because today my friend Joy invited me to the garden she planted at her temple. The garden reminded me of the victory gardens I saw in Boston. Joy planted, cultivated, and nurtures this garden, which in this summer heat is a feat! All the vegetables she generates (which are a substantial amount!!!) are donated to a local food bank. So today, I felt like a lifelong learner in action!

I met Joy when our sons were in preschool together. It is fascinating what two years at Mattie's preschool accomplished for us.... it was a school where Mattie blossomed and had his happiest years, but it was also a school in which we created a lifelong community. A community who was instrumental to us when Mattie was healthy as well as when he had cancer. In fact, many of my wonderful friends were moms at this preschool, and are now strong supporters of Mattie Miracle. Joy, myself, and our boys spent two preschool summers together, the boys swam, ate, played, and shared ice creams together. While the boys got to know each other, so did Joy and I. I will always look upon those summers fondly, and we both laughed today over the mention of Dairy Queen. An ice cream store that both Mattie and I loved!

I am so happy that Joy reached out to me to reconnect, because I enjoyed our breakfast together, and I most certainly loved her garden. Gardening is therapeutic for Joy as well, and I absolutely loved the peace and serenity of her space. Her garden has a beautiful pond near it with geese, birds chirping away, and even a resident grasshopper! Despite the heat, we chatted, picked vegetables, and tended to the garden. Taking me to her garden was a special, meaningful, and very personal gift. But the gift did not end there. After we collected vegetables, we then took full bags to the Manna Food Center. Manna is the main food bank in Montgomery County, Maryland, and nearly every county nonprofit organization relies on Manna to provide essential food to their clients. Not unlike the victory gardens during the wars, today's pickings were also a "morale booster" because it made you feel productive and satisfied to know what we gathered will help those in Maryland who need food.

You should know that Joy's garden is filled with the following (ALL PLANTED BY JOY!!!):
tomatoes
zucchini
yellow summer squash
string beans
eggplants
green peppers
cucumbers

Some of you maybe curious to know that in total we picked 28 pounds worth of vegetables from this garden today!!! I know this for certain because Manna weighted all the items! Below are some of the photos I snapped, and as Joy knows, I travel no where without my camera!!!

This is a photo of the vegetable garden from outside the fencing. The fencing does a great job at keeping out deer and other critters.

This is one of the banks of tomato plants. The fragrance from these plants were intoxicating!!!

Here was a zucchini just ready to be picked!

An eggplant cutie in the making!

We picked a whole bag full of tomatoes. This bag alone weighed 18 pounds!

The green bean plants in this garden were prolific producers. But you had to look carefully and thoroughly otherwise the beans were easy to miss on the vine!

We picked green peppers, zucchinis, cucumbers, and summer squash today!

When I returned home, fluttering around one of my petunia plants was our resident Pipevine Swallowtail. This butterfly visits us often and when he does I think of Mattie.

Tuesday, August 7, 2012

Tuesday, August 7, 2012 -- Mattie died 152 weeks ago today.

Tonight's picture was taken in August of 2006. Creating and building with Legos was a daily occurrence in our household. Mattie had Lego bricks of all sizes, shapes, and colors, and typically he would build a structure, just so he would have a backdrop to play in, around, or with. He would create cities, train stations, boats, or houses for example, which after he created them he would then devise all sorts of imaginative play scenarios.


Quote of the day: Kindness in words creates confidence. Kindness in thinking creates profoundness. Kindness in giving creates love. ~ Lao Tzu

I began my day with a light bulb miraculously exploding out of its ceiling socket, hitting me on the shoulder, and then crashing to the floor in a million pieces. I have to admit, that has never happened to me before, nor did I know what hit me initially, since it happened so fast. A bulb hitting me and shattering into pieces seemed symbolic of something, and therefore, I wasn't sure what the rest of the day had in store for me.

I headed to my zumba class today, and as usual had a good time. Jenny gets us moving, energized, and also creates a positive atmosphere in which members of the class chat with each other and get to know one another. After class, Jenny and I chatted for a while, and I enjoyed this opportunity to connect. I met Jenny in 2008, when Mattie entered kindergarten. Jenny's daughter and Mattie were in the same class together. I would have to admit that if Mattie were still alive, I most likely would not be attending an exercise class. Mostly because when Mattie was occupied in school that was prime time for me to get things accomplished work wise. Also, Mattie's school and my work community gave me many opportunities for social interactions. Since Mattie's death, my time and connections with others have changed. Therefore, in many ways, going to zumba provides much more than exercise for me, it provides structure to my day and it has given me the opportunity to meet people.

After class, I went to visit my friend Mary, who lives in an assisted living facility. We spent several hours together and I feel that tonight's quote captures the interaction we had with each other. Mary, her caregiver Shayla, and I chatted about all sorts of things, and I truly enjoy seeing Mary engaged and participating at times. Mary and I met each other while Mattie was battling cancer. We then spent a great deal of time together after Mattie died, and while her husband was dying. Our time together and our conversations with each other were filled with kindness and mutual respect. Through that kindness, I do believe as Tzu points out confidence, profoundness, and love were created. I feel certain of this based on the fact that Mary entrusted me today with her reflections on her life and her condition. Sometimes such reflections are hard to share with those we are related to, which is why I feel honored that Mary felt she could share this with me. Mary's simple statements made me pause, not brush them aside or placate her feelings, but instead listen to them and reflect on what she was saying. At the end of the day, what it comes down to is I told Mary that I admire her strength and courage because aging with a neurological disease is not easy especially when one has lucid moments and is aware of the profound changes and limitations on one's life.

Monday, August 6, 2012

Monday, August 6, 2012

Tonight's picture was taken in August of 2006. Mattie was four years old and he loved his orange tunnel. So much so that he was wearing it around our home. Even up the staircase. What I also noticed from this picture were Mattie's shoes. Mattie liked to have his shoes lined up on the staircase. It looked a bit like a shoe store at times, with each step featuring a different pair. Our staircase now looks quite barren in comparison, but I recall it took me over a year to remove any of Mattie's shoes off the staircase after he died.




Quote of the day: To be human is to be aware of the passage of time; no concept lies closer to the core of our consciousness. ~ Dan Falk


When my friend Charlie sent me today's quote, my immediate reaction to it was NO! I am certainly very human but since Mattie's death I no longer am aware or care about the passage of time. Before Mattie's death, I would have to admit that we lived in a very time sensitive household. If you doubt this statement, you just need to look at our first floor. We have quite a clock collection....  ALL sorts of clocks: cuckoo, mantle, banjo, and digital! At one time, all these clocks used to be running, and would make noises on the half hour and hour! Now all our clocks are stopped, except for the cuckoo clock. I received the cuckoo clock from one of my mentors in graduate school. Unfortunately months after he retired, he died of a sudden heart attack. But I keep the clock running in his memory. Certainly I am sensitive to Foundation deadlines, and Peter goes to work each day, but the passing of time doesn't have the same connotation, and I imagine that is because without Mattie's presence each day is one and the same.

If July is marked and clouded by the day Mattie was diagnosed (July 23), August has its own problems as well. On August 5, 2009, only SIX WEEKS off of chemotherapy, we learned that Mattie's cancer had spread throughout his body. In fact, I do not think doctors thought this was at all possible, but I knew something wasn't right because Mattie wasn't eating and had NO interest in food or water. Mattie was bright and strong willed, but never manipulative, and I knew if he couldn't and didn't want to eat, there was a reason. I will never forget how I learned about Mattie's terminal status. I took Mattie to the hospital that day for a sonogram to rule out what his issue could be. I knew immediately that the tech performing the sonogram saw something. I knew because he turned to me and Linda (Mattie's child life specialist) and asked us what Mattie originally came to the hospital for in 2008. I soon learned that day that Mattie needed a CT scan and within about two hours, one of Mattie's doctors called me to let me know the news. The news I already sensed from watching the sonogram tech. After I learned Mattie's case was terminal, within minutes I had to pull it together to take him to a physical therapy appointment with Anna. I managed to be composed to get him to the appointment, but then I told Anna that I needed air. She got it immediately. We worked together long enough for her to sense when something wasn't right, because under no circumstances did I ever leave a physical therapy session. I was always right in the mix doing the activities with Mattie and Anna.

I also recall between the sonogram and the CT scan, Mattie and I sat outside in the hospital rose garden. That garden was a haven for me, away from the smells and chaos of living in a PICU. That day, I believe Mattie and I braced for the worst, and he sensed that was coming. Which was why he wanted to get out of his wheelchair, sit on my lap, and hear the story about the day he was born. He sat in my lap, almost like a baby would sit in its mother's arms. Also keep in mind by that point Mattie was very fragile and basically skin and bones. Mattie loved hearing the story about his birth date, and particularly loved the way I recounted it. As August 5th, has come and gone, it maybe another day on the calendar for others, but for us, it was the day our world fell apart yet again.

Sunday, August 5, 2012

Sunday, August 5, 2012

Tonight's picture was taken in June of 2008. Peter took Mattie to Nationals Park to see a baseball game. I wasn't at this game, but one of Peter's colleagues from work snapped this wonderful picture! I related to how Mattie watched a baseball game, because he wasn't interested in the game itself. He was instead fascinated by watching the people in attendance, seeing all the signage, and walking around the park. Which is quite different from Peter! Yet despite being a baseball lover, Peter accepted Mattie's interest or lack thereof during all the games they attended together. What this said to me was Mattie always came first in Peter's eyes and I appreciated Peter's well balanced view of life and sports.


Quote of the day: When you are content to be simply yourself and don't compare or compete everybody will respect you. ~ Lao Tzu


My dad sent me this quote, and as soon as I read it, I related it to grief. That probably comes as no surprise to my readers since grief has become one of the topics I now focus upon in Mattie's blog. I know I have expressed this before on the blog, but because it is such a significant issue, I think it is worth mentioning again. Grief somehow prevents you from being yourself at times, and therefore even the best of us find that we compare and compete with others around us who are also grieving. This may sound absolutely odd, inaccurate, or unhealthy, but unfortunately it is definitely the case. Sometimes the comparisons and competitions between grievers are outright and at other times they are much more subtle. At the root, I imagine the instinct to compete is purely human, but putting that aside, I do think some losses are so painful and difficult that we feel the need to emote and speak with conviction because it is vital that others around us know how important the loss is and how significant an impact it is having on our lives.  

I do see growth in myself with regard to Tzu's quote. Because in the recent past if confronted with what I deemed an insensitive or out of touch comment from a fellow griever, I would get upset, verbalize my feelings, and in essence highlight the comparisons. Now instead, I try to put these hurtful comments into context and not lash out at the person delivering them. Realizing that they are hurting too! With that said, I still do feel their hurt and I am quite aware of the insensitivities! I am talking theoretically and vaguely, so I will attempt to give you an example of what I am trying to convey.

It is not unusual after a significant loss occurs that loved ones feel lost, certainly everyday, but even more so on holidays, special events, and mile markers in one's life. The myth however is that the FIRST holiday or event is the HARDEST and that is gets easier subsequently. VERY, VERY WRONG!!! In fact, I suspect why each holiday and event gets harder for a griever is that over time people expect your life and YOU to return to normal. They expect you to snap out of it, and that joy and happiness will just set in and take over. As Peter jokes with me, he feels people want us to return to Disneyland. If it were only that simple. I am not sure reaching an emotional Disneyland will ever be possible, but finding some sort of equilibrium takes work and time. So onto the example......

Recently someone we are close to was reflecting with us about Christmas and how hard it will be for her and her family this year now that a significant relative in her family died. This person was instrumental to the family's holiday dynamics, and in essence he helped to create and bring to life a family tradition. A tradition that to some extent also dies with the person who created it. Loss has so many tangles and webs, it isn't just the loss itself that sends us spiraling down hill, but it is every aspect of life that is changed, altered, and missing. It leaves us fragile, numb, and directionless. The reflections, what she was saying, and her feelings were very understood by Peter and I. However, what impacted me was I felt as if she was talking to us as if we had no idea of what she was talking about. As if, every Christmas, holiday, and event are fine for us, and therefore we couldn't relate to the challenge that lies ahead for her. Instead of this being something that bonded us together, it further separated us apart. This whole scenario brought Tzu's quote to my mind, and in the past I would have verbalized my feelings, but now I keep them at bay. Because during certain times expressing how you are truly feeling serves no purpose especially in grief. I know how I feel, I accept that I am entitled to my feelings, and I have just about had it when I have to explain to people I perceive are close to me how I am feeling and doing. Or better yet why I am entitled to feel this way. After this interaction took place, I had no commentary on it, in fact I did not even bring it up. It was Peter who brought it to my attention and when he was telling me how he felt, it got me to see that my feelings were justified. He and I were feeling the same way. I am fortunate Peter was able to express how he felt, otherwise I may have thought I was alone in these feelings.

The sad part about grief is that the feelings are intense, emotions can be volatile and raw, and even those you once were close to, can seem miles apart from you emotionally. I assure you this is a great loss in and of itself. As Tzu implied, simply being yourself enables others to respect you. However, I find when I have to stifle how I am feeling or what I need to express to others, then I find ultimately I do not respect myself or am being authentic. Therefore, if I don't respect my own decisions, in the end no one will respect me either. So what is the lesson learned???? The lesson is grief is a journey and to survive the journey you need people who will allow you to be yourself, to express your feelings and needs, in a way that are honest and open, and doesn't set up the dynamic for comparisons and competition. When that is achieved, I find that I feel better about myself, I can be open to hearing and empathetizing with others about their losses, and as a result can unite with them as we manage through this unbearable journey.

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.