Thursday, January 2, 2014

Thursday, January 2, 2014

Tonight's picture was taken in December of 2007. That day I went into Mattie's kindergarten classroom and I read the class a book called, The Gingerbread Baby by Jan Brett. Mattie's preschool teacher introduced me to this book and we both liked it because the main character's name in the book is Matti! After reading the book, I gave each child a huge gingerbread cookie that I made from scratch. I know young learners need hands on activities, so with the cookies I also brought all sorts of frostings and candy decorations, so the children could dress up their cookie person as they saw fit. The visit was a hit and as you can see Mattie brought his cookie home with him.

Quote of the day: We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year's Day. ~ Edith Lovejoy Pierce

We visited the California ScienCenter today. I have lived in California when I was a teenager and naturally I visit my parents each year. Yet this was our first trip ever to this science museum. It is a huge complex and one of its main attractions these days is the Space Shuttle Endeavour which is now retired and resting here. This special and permanent exhibit is entitled, Endeavour: The California Story. It celebrates Endeavour’s many scientific achievements and its strong connection to California, where all the orbiters (space shuttles) were built. The California Story includes images of Endeavour under construction locally in Palmdale and Downey, as well as artifacts that flew into space aboard Endeavour. Dramatic video programs, such as one of the shuttle assembly, roll out and launch convey the emotion and power of Endeavour.

The exhibit is extensive with a gallery of information and then a walk through of the HUGE hanger where Endeavour is housed. Space Shuttle Endeavour is one of the retired orbiters of the Space Shuttle program of NASA. Endeavour was the fifth and final space worthy NASA space shuttle to be built, and first flew in May 1992 with its last mission was in May 2011. The United States Congress authorized the construction of Endeavour in 1987 to replace Challenger, which was lost in the STS-51-L launch accident in 1986. Structural spares built during the construction of Discovery and Atlantis, two of the previous shuttles, were used in its assembly. NASA chose to build Endeavour from spares rather than refitting Enterprise or accepting a Rockwell International proposal to build two shuttles for the price of one of the original shuttles, on cost grounds.

NOTE: Visitors who come to see Endeavour often notice that the flag on the starboard side of the orbiter appears to be "backwards" (see the photo above!). But tradition (and an interpretation of the U.S. Flag Code) suggests that the blue field on the flag (where the stars are) should always be pointed forward, into the wind, as if the flag were flying on a flagpole in the breeze. The flag is painted the same way on many aircraft, such as Air Force One.

This space shuttle is named after the British HMS Endeavour, the ship which took Captain James Cook on his first voyage of discovery (1768–1771). This is why the name is spelled in the British English manner, rather than the American English ("Endeavor"). This has caused confusion, most notably when NASA itself misspelled a sign on the launch pad in 2007.

When the space shuttle, officially called the Space Transportation System (STS), rocketed off the launch pad for the first time in 1981, it became the world’s first reusable spacecraft to carry humans into orbit. Over the thirty-year course of the space shuttle program, the shuttles and their crews assembled parts of the International Space Station, deployed and serviced the Hubble Space Telescope and Chandra X-Ray Observatory, repaired and re-launched satellites, sent probes to Venus and Jupiter, and more.

Five different orbiters flew into space as part of the program—Columbia, Challenger, Discovery, Atlantis, and Endeavour—for a total of 135 missions. Counted together, the space shuttles have carried 355 people, flown over 500 million miles, and spent over 1,300 days in orbit. 

The space shuttle was actually made up of several separate components. What people usually call the “shuttle” is actually the orbiter—the part of the shuttle that held the crew and the cargo, officially called the payloads. The main engines are part of the orbiter. In addition to the orbiter, each shuttle “stack” included two solid rocket boosters and an external tank. All the components were reusable except for the external tank, which by design burned up in the atmosphere over the Pacific Ocean following each launch.

The exhibit features a fabulous film showing its viewers how Endeavour was transported to the museum. After low level flyovers above NASA and civic landmarks across the country and in California, it was delivered to Los Angeles International Airport on September 21, 2012. The orbiter was slowly and carefully transported through the streets of Los Angeles and Inglewood  three weeks later, from October 11–14, to her final destination at the California Science Center in Exposition Park. Endeavour  encountered a few obstacles while transiting the streets narrowly missing telephone poles, apartment buildings and other structures. The lack of obstacles was due, in part, to the fact that over 400 old-growth shade trees had been cut down beforehand. The power had to be turned off and power carrying poles had to be removed temporarily as the orbiter crept along Manchester to Prairie Avenue then Crenshaw Boulevard. News crews lined the streets along the path with visible news personalities in the news trucks. There were several police escorts as well as considerable security helping to control the large crowds gathered. Endeavour was parked for a few hours at the Great Western Forum where it was available for viewing. 

The journey was famous for an unmodified Toyota Tundra pickup truck pulling the space shuttle across the Manchester Boulevard Bridge. The space shuttle was mainly carried by four self-propelled robotic dollies throughout the 12 mile journey. However, due to bridge weight restrictions, the space shuttle was moved onto the dolly towed by the Tundra. After it had completely crossed the bridge, the Space Shuttle was returned to the robotic dollies. The footage was later used in a commercial for the 2013 Super Bowl. Having taken longer than expected, Endeavour finally reached the Science Center on October 14.

Space shuttle main engines (SSMEs) for the orbiters were originally built by Rocketdyne in Canoga Park, California. Clustered in a set of three at the back of each orbiter, the SSMEs burned propellants from the large, orange external tank mounted on the orbiter's underside. The SSMEs helped to push the shuttle up to orbit. Engineers at the Rocketdyne Operations Support Center (ROSC) in Canoga Park remotely monitored the SSMEs during launch and for the first eight and a half minutes of every shuttle flight, checking pressures, temperatures, and other readouts until the shuttle reached orbit. If something went wrong, Rocketdyne staff could provide recommendations to launch control in Florida or Mission Control in Houston.

The exhibit went into detail about living conditions aboard Endeavour. Naturally that includes bathroom use and food!!! In the microgravity environment on orbit, where everything floats, waste doesn't plop right into the toilet like it does on Earth. Without the familiar tug of gravity, poop doesn't fall off and urine clings to any surface it touches. Water can't be used for flushing because it wouldn't stay in the toilet! To solve the delicate problem of separating waste from astronauts in space, engineers and scientists developed the Waste Collection System, or WCS, which pulled urine and poop away from the body using airflow--kind of like a vacuum cleaner works.To use the WCS, astronauts would urinate into a funnel attached to a hose that sucked it away. They would poop in a hole in the potty seat, but the hole was much smaller than the holes in toilet seats on Earth. Airflow would pull the poop into the right spot to be stored. 

Astronauts on Endeavour  used a special kitchen, called a galley, to prepare meals in space. The galley’s oven heats food, and a rehydration station (the machine you see here) adds hot or cold water to food and drinks. Water for the rehydration station comes from the orbiter’s fuel cells. The galley on display at the California Science Center is the Shuttle Orbiter Repackaged Galley (SORG), and Endeavour was the first orbiter to use it. Later, all the orbiters were updated to include the SORG.

The science museum also features several imax films. We chose to see Flight of the Butterflies today. This film takes viewers on a journey that spans thousands of miles, three countries and several generations — tracking real monarch butterflies that leave Canada for their mysterious Mexican winter haven. Based on true events, Flight of the Butterflies 3D follows the extraordinary migration of the iconic monarch butterfly and the determined scientist, Dr. Fred Urquhart of Toronto, who spent 40 years to unearth where they went each fall. It is an incredible and haunting sight to see hundreds of millions of butterflies in the hidden butterfly sanctuaries set 10,000 feet high in the mountains of Mexico.

Seeing the Space Shuttle Endeavour and the film about butterflies today was very special and yet of course it all reminded me of Mattie. The museum was swarming with children and families, almost to the point that it was overwhelming and a persistent reminder. The museum store was also another wake up call. It could have been designed with Mattie in mind from the special machines that stamp one's location onto a penny (which Mattie LOVED and collected), to Lego type space shuttle products everywhere. I sent Peter a photo of one of these Lego things and he got it immediately. It only takes a photo to identify something Mattie would have loved! Needless to say being inundated this way makes me edgy and internally unhappy and yet for a mom who lost a child to cancer, this is one's everyday existence. Which is why so many of us want to live under a rock on certain days! 

Wednesday, January 1, 2014

Wednesday, January 1, 2014

Tonight's picture was taken in December of 2007. That evening we walked with Mattie to the National Mall, right outside the White House gates. We photographed Mattie in front of the National Christmas tree and then walked around the display to look at the toy trains and the trees from the 50 states. We thoroughly enjoyed our surroundings that evening and it was our first time also seeing a real yule log. It was freezing outside so standing by the fire given off by the log was a real welcomed treat.






Quote of the day: Be always at war with your vices, at peace with your neighbors, and let each new year find you a better man. ~ Benjamin Franklin


Being officially 2014, I want to reflect on the fact that I am moving into my sixth year of writing Mattie's blog. When Peter created this social media site for our care team in July of 2008, I actually wasn't planning on doing any of the writing. I viewed this as Peter's project. That notion lasted only maybe two weeks before I felt the need to express what was going on. Something I suspect Peter knew I would gravitate to!!! Certainly I would have never envisioned that the blog would grow and evolve into what it is today. 

Originally the notion of the blog was to let friends and family know how Mattie was doing from day to day. It became necessary to establish such a site because it was impossible to verbally share accurate information to our entire community on a daily basis. While Mattie was battling cancer, the blog was visited by hundreds of people and on surgery days, I would say the blog was hit thousands of times. If you are interested in going back through the history of the blog, you can even see that people posted comments to my daily postings. The blog in and of itself chronicles a special little boy's journey of courage to battle osteosarcoma. A cancer which in my opinion is not for the meek or weak of heart and spirit. However, once Mattie died, the blog could have easily died with him. After all this is MATTIE'S blog, a blog about his battle and what we thought would be his recovery!!!

However, I view the blog as one of Peter's gifts to me. I certainly did not have the where with all or even knowledge back then to create a blog. But fortunately Peter did and saw the need for technology to bring our communities together. I believe one of the reasons we had such a strong care community (Team Mattie), was not only because it was comprised of amazing people, but because we shared our thoughts, feelings, and needs with these wonderful people daily. Not just then, but also now. It was through Mattie's blog that I observed first hand the power of being vulnerable. The ability to share honestly isn't easy and yet I saw how it opened up conversation and hearts in those around us. I can assure you there were days that I did not want to write and in fact there were times I had to censor what I truly wanted to say. I still have days like this when I could easily call things as I see them, but I realize my truths could cause hurt to specific people. 

The blog has evolved in the last six years. In the first year after Mattie died, the blog became a vehicle to allow our care community into our world to know how we were doing physically and emotionally. The first year is deemed a crucial year in our society in which intense mourning and support is thought to be needed. However after that first year, I wonder what people thought would happen...... that we would bounce magically back and therefore did not need the same support, kindness, and friendship? I imagine society feels if the first year is survived then the subsequent years can't possibly be as painful. Which of course isn't true at all. All years after the first year are challenging and I would say different challenges surface with each passing year. The further you get from the loss, issues arise. You can feel guilty for not being able to remember certain details, for having a life while your child is gone, understanding that people forget and your loss is no longer in the forefront of their minds, and the list goes on. 

Yet what I did not expect is that the blog serves a purpose to people I do not even know. People around the Country and the world. We have readers as far away as Australia and India. People who are facing or faced a loss. When people reach out to me and share that my words resonate with them and that they do not feel alone after reading the blog, this inspires me. It also helps me to see that my grief and my reactions are not solely Vicki problems, they are problems so many parents who lost a child to cancer endure. Yet for some reason are just not commonly talked about!!!

Connecting through words and feelings.... this is the gift that Peter gave me in 2008, when he developed the blog. It also happens to be a gift that keeps on giving. Though if you ask Peter, he would say the blog is ALL ME!!! That I make the blog come alive and that goes beyond technology! Even days when I am in the worst funk ever, I find my way to the blog. At the very least I post a photo of Mattie and a quote. Writing is my therapy, keeping Mattie's spirit alive is my mission, and as I migrate into 2014, those two things haven't changed. These are my givens in life, or in essence how I end and start each year. 

All my best to my readers for a healthy and happy 2014! Some of you have been with me on this daily journey since the beginning, July of 2008! You are loved.  

Tuesday, December 31, 2013

Tuesday, December 31, 2013 -- Mattie died 224 weeks ago today.

Tonight's picture was taken in December of 2007. We have very few photos with all three of us in them. This was perhaps one of the few Christmas photos we have as a threesome. Which is why I suppose it is so special to me.




Quote of the day: Everything has beauty, but not everyone sees it. ~ Confucius

On behalf of Peter and I, we want to thank you for your wonderful contributions in support of Mattie Miracle over the course of this month (during our annual drive)! We can't think of a better holiday gift you could have given us. All that we accomplish would not be possible without you! A sincere thank you and we wish you all the best of health and happiness in 2014! 


I began my day with an email from a person I do not know. The message read:

========================================
I recently learned about a very safe and effective treatment for cancer, especially childhood cancer, that might have saved Mattie's life if only you had known about it. I want to do whatever I can to make it known and available to cancer patients throughout America, and I am looking for groups like yours to help in that fight. I am willing to have a set of 2 DVD's all about this treatment sent to someone who is sincerely interested in it, if you will just tell me who to send it to.

This treatment was discovered several years ago, has none of the side effects of chemo and radiation, and has been proven effective in stage 3 clinical trials. It would completely revolutionize cancer treatment as we know it today, and therein lies the problem. The big drug companies could not make a profit on it, and the entire system based on chemotherapy and radiation would collapse. The drug companies have convinced the FDA not to make it available in this country. I believe that keeping this treatment from those who so desperately need it is criminal, and I am looking for people who are willing to take on what will be a major battle against big PhRMA and the FDA. Will you help?
=========================================

I am sure while reading the message above, you may have different feelings about it from FANTASTIC send me the DVDs to ARE YOU KIDDING ME?!!! Unfortunately my response was the latter. She particularly LOST me when she made it personal and said that I might have been able to save Mattie if I knew about this treatment!!!! What a lovely New Year's Eve gift to receive. A message from a stranger letting me know that I possibly did not do all that I could to save my child. I really question the integrity of this message. 

In any case, Mattie Miracle gets many solicitations and inquiries from professionals, individuals, and hospitals throughout the year. The key is to know which ones are sincere and legitimate. Naturally ALL of us want a cure for childhood cancer but the message above is NOT such hope. Instead it is falsehood that could possibly cause parents to decide not to use standard treatments to fight a horrific disease. 

Needless to say the medical treatment of cancer interests me and in all reality it must interest any one whose life has been touched by cancer. Yet at the end of the day, this is not where my passion lies. Instead it lies with direct emotional and psychological support of children and their families with cancer. The day to day management and life time management of the disease. I wish there were magic beans out there that would cure our children so that no family has to experience the death of a child to cancer, but no such thing exists and I resent those who prey on the desperation of others.  

This evening, I asked Peter if he remembered our first New Year's Eve with Mattie. That would be December 31, 2002. Mattie was eight months old. We had put Mattie down for bed earlier in the evening with the hopes that he would sleep through part of the night. However, about ten minutes to midnight, Mattie started crying and wanted out of his crib. None of this surprised us since Mattie did not sleep through the night until he was 15 months old. That was only because we read about the Ferber method and trained him to sleep! Any case, that New Year's Eve I brought Mattie downstairs and he sat with us while watching the ball drop in Times Square. We took that as a direct sign that Mattie wanted to ring in the New Year as a family. 

Since Mattie died, Peter nor I have the desire to watch the ball drop or anything associated with Times Square. In so many ways time marches on, but for us transitioning from one year to another truly has no meaning to us. Because each day is a day without Mattie, I no longer track it by years. I remember New Year's Eve of 2009. I was actually scared to move into 2010, a new year without Mattie's presence in it. As I watch my friend in cancer go through this now, it is ironic that she feels the same way I did in 2009. Even without us talking about it. I remember that fear that first year, but now the fears are different. 

This evening I went out to dinner with my parents. While at dinner, I observed a couple with an only child. The little boy had to be about four years old. As I stared at this family, it reminded me of me. Well except Mattie never sat down quietly at dinner. This little boy tonight was glued to an i-pad the whole dinner. That NEVER would have worked with Mattie! Mattie was all about stimulation and interpersonal connection. 


This is a photo of one the star lined streets in my parent's neighborhood. There is something quite magical about seeing stars in every front yard!

This is a view of the valley at night from my parent's neighborhood. Another magical sight!  

Monday, December 30, 2013

Monday, December 30, 2013

Tonight's picture was taken on Christmas Eve of 2008. That day Mattie was visited by his close preschool buddy Zachary. While Zachary was visiting, we also had the honor to be introduced to two marines. They were visiting children in the hospital for the holidays and giving every child a toy or two. Mattie loved seeing these men in their uniforms and their presence really caught his attention. Zachary also enjoyed the visit. It was a major change in our daily routine and it did bring us some holiday cheer.

Quote of the day: Tension is who you think you should be. Relaxation is who you are.  ~ Chinese Proverb


As my faithful readers know, I rarely go to the movies. In fact, I tend to only go when I am in Los Angeles visiting my parents. They know that I will only go to see certain movies, so typically if they recommend I go, it is for something worthwhile. Today's movie, Saving Mr. Banks did not disappoint. Basically this is a true story about the author (PL Travers) of Mary Poppins and how Pamela Travers comes to sell the rights to her book to Walt Disney in the 1960's. Naturally most of us are very familiar with the movie Mary Poppins and even if you haven't seen the movie, my guess is most of us know the music. So much so that I bet you know the best way to swallow medicine....... with a SPOON FULL OF SUGAR MAKES THE MEDICINE GO DOWN. Honestly it would never have dawned on me that the author of such a tale could have such a dark, dysfunctional, and tumultuous upbringing. I think this movie is a three to four tissue event, so if you go see it, go prepared. I never thought I would leave a movie about Mary Poppins crying, with swollen eyes, and a massive headache. But it happened!

Inspired by the extraordinary, untold back story of how Disney’s classic “Mary Poppins” made it to the screen. When Walt Disney’s daughters begged him to make a movie of their favorite book, P.L. Travers’ “Mary Poppins,” he made them a promise—one that he didn’t realize would take 20 years to keep. In his quest to obtain the rights, Walt comes up against a curmudgeonly, uncompromising writer who has absolutely no intention of letting her beloved magical nanny get mauled by the Hollywood machine. But, as the books (yes she wrote multiple books about Mary Poppins) stop selling and money grows short, Travers reluctantly agrees to go to Los Angeles to hear Disney’s plans for the adaptation. For those two short weeks in 1961, Walt Disney pulls out all the stops. Armed with imaginative storyboards and chirpy songs from the talented Sherman brothers, Walt launches an all-out onslaught on P.L. Travers, but the prickly author doesn’t budge. He soon begins to watch helplessly as Travers becomes increasingly immovable and the rights begin to move further away from his grasp. It is only when he reaches into his own childhood that Walt discovers the truth about the ghosts that haunt her, and together they set Mary Poppins free to ultimately make one of the most endearing films in cinematic history. 

I naturally thought the movie was fantastic, well acted, and meaningful. But if you want other opinions, I attached two links below. The Vulture article lives up to its name. It attacked the movie viciously and felt that Disney produced this movie just to beef up its own name and reputation. The Vulture felt the movie was pro-Disney and did not capture the true essence of Travers. However, the LA Times interviewed several people for its article and from what I can tell Emma Thompson quite legitimately portrayed Travers. I suppose you can be the judge of that. However, what intrigued me about the movie besides the artistic genius of the Sherman brothers who transformed a story into a musical, was the power once again of the human connection. I have no doubt that Travers would never have sold her story to Walt Disney if he did not invest the time and understanding to get to know the real Travers. 

Travers characters within her book represented her own family members. Particularly her father and herself! Therefore something so personal, makes it difficult to alter or to see one's story through the eyes of others. In essence altering characters can be like a betrayal of the memory of a loved one. Yet it was through Travers' relationship with Disney that I think she was able to rewrite her own life script. He gave her the encouragement she needed to permit herself to let go of the past and to help her reshape her future. The movie enabled me to see that she had the power to take all past hurts and losses, not forget them, but accept them, and understand that she is more than the sum of these issues. The issues should not hold her prisoner, they are a part of her, but she needed to learn to forgive herself and not feel she had to be punished for the wrong doings of her family. Taking the courageous step to develop Mary Poppins into a musical and to sell the rights to her story, was an exercise in hope, awareness, and forgiveness. 

Clearly the story of PL Travers and my own are very different. The issues are night and day and yet at the core they are the same. We both feel trapped in our past, a past that influences our interactions, and our future. Finding a way through the hurt is no easy journey but I wish upon myself and anyone else struggling with loss and/or past issues to be able to develop a meaningful connection with someone who enables us to see a future and have a new script, different than the one playing inside our own heads.  

http://www.latimes.com/entertainment/movies/moviesnow/la-et-mn-disney-mary-poppins-saving-mr-banks-travers-20131228,0,5785246.story#axzz2p1LKCyZn

http://www.vulture.com/2013/12/saving-mr-banks-pl-travers-fact-check-mary-poppins.html

Sunday, December 29, 2013

Sunday, December 29, 2013

Tonight's picture was taken in December of 2008. Mattie was in the hospital and getting used to life in a wheelchair. After Mattie's second limb salvaging surgery in November he never walked again. This was a huge adjustment in and of itself, much less having to battle cancer. That day a friend came to visit and she gave Mattie Christmas stockings and a cute magnetic Santa. Mattie attached Santa to his wheelchair and decided to wear the Christmas stockings rather than hang them up!







Quote of the day: You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do. ~ Eleanor Roosevelt

My mom and I went for a walk this morning around her neighborhood's track. While walking, my mom told me she noticed something moving out of the corner of her eye, like a big dog. Though I love dogs, I tend not to like encounters with stray dogs. However as we got closer to the moving target, we noticed they were deer. A mom and her baby in tow. I did not have my camera with me so I got out my blackberry (I can hear Peter screaming as I write this!) and snapped a photo of this scene. I realize this isn't very clear, but if you look closely you can see mama deer looking at me and baby deer was eating.


While walking around the track we bumped into one of my parents friends who lives in the neighborhood. I have met this neighbor before on previous trips. Any case he greeted us and as a caveat I should say that he has a very upbeat, high energy, and positive personality. As he was talking about his mom who is ill he mentioned that "God answers all prayers." Hearing this saying or platitude almost elicits an automatic response. It is almost Pavlovian in a way for me. Maybe because I have heard it SO often when Mattie was battling cancer. Nonetheless, my response to this is, "No God doesn't answer all prayers. He may hear all prayers but they aren't always answered." He began to counter my statement and said that we are all God's creatures and therefore not all of us are guaranteed a long time on this earth, some of us get called back sooner like Mattie. I am not sure if this was supposed to make me feel any better, but on the contrary what it produced was more agitation. I accept that all of us deal with grief and loss differently, but when I feel people are pontificating to me or suggesting that I need to deal with my grief in the same way as they do/did, that is when I get very defensive. 

I think religion and spirituality are personal issues for people on a good day and can be difficult topics to talk about. Now add into the mix a tragedy, loss, or misfortune, and a person can be all over the map about God. Because I have issues with God's decision to take Mattie, doesn't mean that I do not believe in God and that I am no longer Catholic. I have many people thinking this about me, which just isn't true. I think God is certainly powerful enough to understand my anger and my disbelief in Mattie's death and yet also know that coming to terms with all of this has to be on my time schedule. Not society's!

In addition to deer sightings, we also had a bunny encounter. There is a patch of grass near my parent's street which attracts bunnies. By dusk, they all come on out to eat. As you can see this fellow caught me spying on him. He had his eye and ears on me. 

This afternoon, we all went to see a play called Mom's Gift. This is a world premiere comedy with a heart. The plot entails a mom who has been dead for 11 months and shows up at her husband’s birthday party as a ghost with a mission. Like Clarence in “It’s A Wonderful Life,” she has to accomplish a task to earn her wings. Only what the task actually is, is a mystery.

I have seen this small theater group perform many shows in the past, but I would have to say this one may have been one of their best. The six actor cast was fantastic and the story line was much more complex and deeper than your average Christmas story. It was a real tearjerker. In many ways the mom was sent back to earth as a ghost to help her family members resolve many of the interpersonal conflicts between them. At the core all the dysfunction is a result of miscommunication or perhaps LACK of communication as well as the issues associated with grief and loss. Each of the characters in the play were dealing with the death of the "mom" in different ways and it was interesting to hear this dialogue unfold. I think discussing grief is no easy feat and yet this story did it in a very meaningful and heartwarming manner. Needless to say, just like in "A Wonderful Life" a bell was wrung at the end of the play and we we are left happy knowing that this mom's mission on earth was accomplished and she was granted her wings. 

Saturday, December 28, 2013

Saturday, December 28, 2013

Tonight's picture was taken in December of 2008. Around Mattie's neck was a beautiful wreath his art teacher and classmates made for him. The leaves of the wreath were constructed from paper and on each leaf was a message from Mattie's classmates to him. This wreath hung on the back of our front door until this fall. The wreath carried special and yet painful memories for us. When Mattie was sick he received many cards, messages, and at times visits from friends. In the beginning Mattie enjoyed all of these things, but as his disease progressed Mattie retreated within himself and no longer appreciated noise, visits, or at times being in and amongst the "well world." This was a hard reality to accept, and therefore Peter and I also became absorbed in the world of cancer, sickness, and eventually death and dying. It is very hard to move from that world back into the "normal" world. Mainly because we know what the alternative looks like.  

Quote of the day: Change your thoughts and you change your world.  ~ Norman Vincent Peale

I began my morning with this sighting! A huge hawk
right outside my parent's home in a tree. He looked so regal and beautiful, yet I have seen up close and personal the kind of damage a hawk can do to a small bird. Several hawks have come to our bird feeders in DC, and plucked sparrows right from the feeders and killed them. To me these are noteworthy birds and this one definitely caught my attention this morning. 


My mom and I ventured for the day to the Los Angeles County Museum of Art (LACMA). I was introduced to LACMA when I was a high school student. I remember taking an art history class in high school, and though I had been exposed to art all my life, this class really made me turn a corner. I learned back then in my teens that art spoke to me and evoked certain feelings. Needless to say, I have been intrigued by art all my life and I think those who tell me they don't appreciate art or like going to museums, just haven't experienced the right art for them yet. I will never forget my art history teacher and she certainly took our class to some great museums in LA. Funny how such memories can come back just by visiting a place. 

We saw a special exhibit today entitled, Calder and Abstraction: From Avant-Garde to Iconic. One of the most important artists of the twentieth century, Alexander Calder revolutionized modern sculpture. Calder's most iconic works, coined mobiles by Marcel Duchamp, are kinetic sculptures in which flat pieces of painted metal connected by wire move delicately in the air, propelled by motors or air currents. His later stabiles are monumental structures, whose arching forms and massive steel planes continue his engagement with dynamism and daring innovation.

Installing a sculpture exhibition—particularly one in which works are bound to walls, sit on pedestals, hang in the air, hover close to the ground, and vary significantly in scale—can be tricky. In developing this exhibition, the senior curator reviewed historical photos of Calder’s studio and presentations he designed and compared them with exhibition design from the past 40 years. During Calder’s lifetime, displays seemed to mimic those found in his studio: crowded together, overlapping, presenting a riotous cacophony of competing forms far removed from contemporary concerns of conservation and visitor-circulation paths. In the past few decades, museum exhibitions have had to grapple with these real concerns, which are exacerbated by increasingly large museum crowds. Extensive plinths, protective barriers, and pedestals mitigate intentional or inadvertent touching, but can hinder the viewer’s ability to relate intimately with the works. Clearly, from the curator's perspective, decisions about density, space, light, and color would need to be weighed against concerns for the safety and protection of the art.

This mobile of Calder's is entitled, Laocoon (1947). Here is an interesting fact, in 1995, at Christie's in NY it sold for $992.500!!! I have seen Calder's works before, but never 50 at one time and in one huge space! I can't say you finish this exhibit and say..... how beautiful, or how exquisite! Calder was an engineer by training and therefore, I am not sure I see artistic beauty as much as creativity and fascination with structure, form, and the dynamics of movement. But for those who have never seen one of Calder's mobiles, they are huge. Much bigger than a person! Their size alone makes them impressive along with the fact that they move or dance gently with any breeze. 

Another aspect of planning the show that was critical to the curator was the desire to slow down people’s pace while looking at the works of art. She purposely limited the exhibit to feature 50 objects—giving the art ample space to breathe. The curator also wanted to encourage people to spend more time with individual objects so that the gentle movement could be observed in the mobiles. If you take the time in the show, you can easily understand the observation that Jean-Paul Sartre made in the 1940's after visiting Calder’s studio: “But suddenly, when the agitation had left [the mobile] and it seemed lifeless again, its long majestic tail, which until then had not moved, came to life indolently and almost regretfully, spun in the air, and swept past my nose.”

To see the entire exhibit, go to this slideshow:
http://www.flickr.com//photos/lacma/sets/72157638119901055/show/with/11088061416/

After the Calder exhibit, my mom and I went to see a new exhibit by David Hockney. Hockney is considered one of the most innovative artists of the postwar era. British-born David Hockney has, throughout his career in Los Angeles and England, adopted various new media in order to investigate perception. Embracing cutting-edge technology including Polaroids, iPad and iPhone drawings, and most recently film, Hockney explores new ways to depict movement through multiple perspectives of a singular event. This exhibition introduces Seven Yorkshire Landscape Videos (2011), in which eighteen cameras, fixed to Hockney’s car, record drives through Yorkshire’s landscape. The film is displayed in a multi-screen grid that generates a larger, intensified image. For Hockney, these multiple perspectives “force the eye to scan, and it is impossible to see everything at once… [It] gives back the choice to the viewer, and hence…brings about possibilities for new narratives.”

I am not sure I have ever seen a Hockney work of art. So after seeing this landscape video above, we went in search of Hockney's painting entitled, Mulholland Drive: The Road to the Studio. This painting is part of LACMA's permanent collection and this photo doesn't do it justice. Mainly because it is enormous. At least 10 to 15 feet long!!! It takes up an entire wall and the colors jump out at you. Basically he painted this to capture his drive from him home in the Hollywood Hills to his art studio on Santa Monica Boulevard. The sheer size and colors are remarkable.

Also part of the permanent collection of LACMA is another Calder mobile entitled, Hello Ladies. These three mobiles behind me are the "ladies." The wonderful part about the ladies is they are within a fountain and there are water jets that occasionally hit the mobiles. When the water hits the mobiles it makes a lovely sound and also turns the mobiles. This is a very clever and peaceful outdoor exhibit. 

I have visited LACMA before for many years but frankly I never knew that one could walk from the museum to the La Brea Tar Pits and Museum. They have now opened the gates between the two museums and therefore we migrated over the Tar Pits Museum. That may not sound like a big deal, but this museum was Mattie's favorite place to visit in LA. The museum is SO kid friendly and does a great job at capturing the mind and imagination regarding prehistoric animal life. Basically natural asphalt has seeped up from the ground in the area around the museum for tens of thousands of years. The tar is often covered with dust, leaves, or water. Over many centuries, the bones of animals that were trapped in the tar were preserved. The George C. Page Museum is dedicated to researching the tar pits and displaying specimens from the animals that died there. Outside the museum is this model of a prehistoric elephant captured in the tar. I have many photos of Mattie in front of this model. It seems simply impossible to accept that the model remains, but not Mattie. I emailed Peter this photo today and asked him to guess where I was! Naturally he knew and responded within seconds! One can never forget what one's child loved and became animated over!

At the Tar Pit museum is Pit 91. This is an overhead view of the pit. Basically this is where scientists excavate prehistoric animal bones from the tar. They comb through a 6 inch layer of tar each year. This has been going on for decades. 

These are fun facts about Pit 91. Mattie just loved all of this kind of stuff and it continues to be a very odd feeling to walk the paths Mattie once did and know that he isn't physically with me. Other people around me have their children growing up along side them. Mine, not unlike these animal fossils, is long buried and it takes purpose and determination to keep Mattie's memory alive. 

Friday, December 27, 2013

Friday, December 27, 2013

Tonight's picture was taken on Christmas of 2008. That was a hard day for all of us. We were home from the hospital and were alone. Which was a night and day difference from living in the hospital. In the hospital there was constant noise and people around us 24/7. When we were home we had more privacy but then again we also had NO physical or emotional support. Mattie was in a very depressed and anxious state that day. One of Mattie's friends sent us these Christmas hats and noses and Peter decided to put some on which inspired Mattie. They posed for a photo on Mattie's hospital bed, which was in our living room. However, what you see here was probably our most happy moment that day.

Quote of the day: Let us be grateful to people who make us happy; they are the charming gardeners who make our souls blossom. ~ Marcel Proust


This morning I felt like I was Mrs. Danvers in Daphne Du Maurier's book, Rebecca (also a Hitchcock movie). For those of you unfamiliar with Mrs. Danvers, she was the ultimate snoop. She knew exactly what was going on inside and outside of a home. I wasn't purposefully snooping this morning, rather I was a sun seeker. I went outside of my parent's house and stood on the front lawn in the sun for the few minutes. To me being in the sun for short periods of time just makes me feel good. While standing around looking at the vegetation and mountains, an old car drove by, down the street, turned around and parked across the street at a neighbor's house. The person in the car was an older gentleman, who opened up the driver side door and began to stare at me. We had a staring contest for five minutes. I wasn't moving and he wasn't getting out of his car! When he did emerge from his car, we was dressed oddly for a warm day. He was wearing a wool hat, covering plenty of his hair! He opened his trunk and took out a large burlap sack. If he was portly and had a red suit on, I swear he could have been Santa Claus! But this Santa looked dazed and confused and I did not understand why he was carrying a big sack. Any case, he proceeded up the neighbor's front walk way. He mulled around a bit, dropped the sack and then crossed over the driveway and was looking over a gate into the backyard. He popped the latch on the backyard gate and walked in. I found his behavior beyond odd especially since he kept walking back and forth. Not getting into the house but walking in circles. 

I told my parents about this character and we wrote down his license plate number, tried calling the neighbor's cell phone, and then proceeded to call the security company for the neighborhood. Literally within seconds a patrol car was in front of the house and I came out to talk with the officer. I told him what I observed and that he could find "skinny Santa" (if you know me well, I have a nick name for practically everyone in my life) in the backyard. The officer did find the burlap sack by the front door and told me clothing was inside! It all checked out in the end, because he was our neighbor's father, but he was disoriented and did not know how to get into the house. He did not know where the key was and I guess he was watching the house while his son was away. Any case, the officer thanked me for taking this seriously, calling him, and agreed with me that the man seemed questionable and appeared disoriented. Now I could have just let this all go, but what if something was wrong in the end? I would have felt terrible for keeping it quiet!

This afternoon we all went out to lunch. My dad had some medical tests today, so we discussed them, and we got a better understanding for some of the issues he has been dealing with. Dialoguing is important and I think it is vital for family members to all be on the same page about medical issues so that we can ultimately advocate for what is in the best interest of the patient. 

Peter and I are both dealing with our own lows. It is rather ironic that we are on separate coasts now but we are both feeling the lows. We hadn't discussed them until today, but as soon as we did we both got it right away. Both of us went on Facebook recently. I must confess, I rarely visit Facebook. I only do on occasion to post about the Foundation or to check on my friend in cancer. Otherwise, I have learned for survival purposes, I try to limit my exposure. But today I went on to look at a few friends' pages. After five minutes I had to STOP!!! I was getting super depressed, then angry, which then moved to intense bitterness. I just can't process these cutesy photos of friends, family, happy moments, and other holiday gatherings. It turns out that Peter had a similar experience yesterday which sent him into a funk. So we both agreed, no Facebook during the holidays. I think it is rather a sad commentary. Facebook is designed to keep people connected and to share things between friends and family. Whereas to me Facebook is a social media tool that highlights exactly what we are missing and flaunts it in our faces minute by minute, hourly, and daily. 

Thursday, December 26, 2013

Thursday, December 26, 2013

Tonight's picture was taken in December of 2008. That day Mattie was in the clinic and as you can see he wasn't feeling well. He was depleted of energy and running a high fever. There was a pillow on Mattie's lap because that was where he was laying his head. When Santa and Mrs. Claus came in to visit Mattie, he literally picked his head up from the pillow long enough to say hi, take a photo, and check out the toys he was given. With the help of Santa's elves (Linda - Mattie's Child Life Specialist and Jenny - Mattie's Art Therapist), Mattie received many of the toys he loved playing with. As soon as Santa left the room, Mattie's head collapsed right back onto the pillow.

Quote of the day: Since you get more joy out of giving joy to others, you should put a good deal of thought into the happiness that you are able to give. ~ Eleanor Roosevelt


Today is the day after Christmas and I suppose because it is a weekday and a working day for most people, things seemed to return to business as usual. However, I am very aware of the fact that those who are grieving the day or days after Christmas are anything but usual. In fact these days are far more difficult than Christmas itself. I have a feeling the main reason for this has to do with the psychological preparation and bracing we go through in order to survive the holiday. However, once Christmas is over we lift up these barriers (because to sustain them long term is impossible) and our reality becomes even more unimaginable. I think most people who try to support a family member or friend in grief are unaware of the impact of post-holiday blues. We all can get post-holiday blues, but it seems far more extreme for those who lost a child, and I would go a step further, for those who lost an only child. I guess my one piece of advice which I feel I can share because I have learned it the hard way is the importance of continuing to reach out to those who are grieving a child. Because Christmas has come and gone, doesn't mean that things have returned to normal or have stabilized. In fact, the exact opposite may occur and therefore your presence in a friend or family member's life is actually quite crucial now. 

My parents continue to feel under the weather, so therefore doing non-taxing things and staying close to home are important. We went out to lunch today and sat outside. It was a glorious weather day, it had to be in the 80's, and I truly believe that fresh air and sunshine can cure many ailments. As I look around me I am not sure others truly appreciate the weather they have in December. To me it felt like a spring day. By the time we got back home, it just seemed too lovely to be inside. So my mom and I went for a walk. While out walking we ran into a neighbor of hers, I got to meet his adorable dog, and we also got to see the sun setting. I have found through Mattie's battle and then death to appreciate the simple day to day things, because they are really quite special and memorable. In fact if you talk with anyone who has a grave and terminal illness, the one common thread no matter the illness is the loss of one's daily routine. The longing for the mundane and the ordinary. Things we find annoying or take for granted when healthy. Yet having the freedom to drive one's car, to have lunch out, to watch a sunset, and to take a walk all are things I very much wanted when Mattie was sick. As opposed to being trapped in a hospital for over a year and being unable to provide solutions to Mattie's disease. Therefore when I have these wonderful freedoms now, they do not go unrecognized by me.    

Wednesday, December 25, 2013

Wednesday, December 25, 2013

Tonight's picture was taken in December of 2008. This was our last Christmas with Mattie and it was really a brutal holiday. Mattie was recovering from his limb salvaging surgeries and was also in the process of developing a full blown case of medical post traumatic stress. Peter and I were at our wits end caring for Mattie at home and when I look back at this now, I just don't know how we met his physical and psychological needs. Especially when we practically had NO sleep. Mattie's disease left him unable to sleep and therefore that meant we also got NO sleep. While Mattie was home, he was visited by my friend's uncle who dressed up as Santa. Mattie loved Ed's visit and it is sad to think that both Mattie and Ed are no longer with us.


Quote of the day: And the Grinch, with his Grinch-feet ice cold in the snow, stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled 'till his puzzler was sore. Then the Grinch thought of something he hadn't before. What if Christmas, he thought, doesn't come from a store? What if Christmas, perhaps, means a little bit more? ~ Dr. Seuss


Christmas of 2008 will always remain firmly in my mind. It was the last Christmas we had with Mattie. I have learned that everything in life is relative. Meaning that I thought in 2008 we had it hard. Little did I know that Mattie with cancer was better than no Mattie at all (never really planned for that option). Looking back, I thought our life in Christmas 2008, was absolutely impossible. Mattie was home from the Hospital (since hospitals work hard to discharge you before a major holiday if they can) and trying to recover from two limb salvaging surgeries. Mattie was also dealing with pain, immobility, and the beginning of medical post traumatic stress disorder. We were on overload balancing Mattie's medical care at home which was enormous and his psychological needs. Needs which his doctors couldn't appreciate until they saw him a week later in clinic. I remember vividly the sadness that surrounded us that Christmas and just how depressed Mattie was. We hear of people struggling with depression, which is an all encompassing issue, but observing this nightmare happening to a six year old is hard to stomach. Especially when it is your six year old and he is also struggling with cancer. Cancer that physically ravaged his body. Mattie's cancer, unlike some other cancers, was a very visible cancer. A cancer that removes limbs! So unfortunately if you ask Peter or I about Christmas and how we feel about it, at the core you most likely will hear our sadness and our final memories of Christmas as a family. 

This evening, we had a big dinner party with several of my parents friends. I have been planning this dinner for days but wasn't sure we could pull it off since my parents have both been so sick for almost a week now. I tried to do most of the work so that this day would be possible. While cooking in the kitchen today, don't you know my HUGE grasshopper friend came back to hang out on the window screen. He later jumped away, but he was with me for most of the morning. As I mentioned last night, I take Mr. Grasshopper as a sign from Mattie to me! It had to be close to 80 degrees in Los Angeles and I had all the windows open to get fresh breezes throughout the house. People here take this for granted, but since Washington, DC was 25 degrees today, I know this sunshine is to be cherished. 

I started off my morning however with text messages back and forth with my two nephews and my niece. That was a special highlight and my nephew closest to Mattie's age shared with me his favorite gift he received under the tree. I could hear his excitement even through his words. 

When Mattie was battling cancer, we became friends with a young lady named Bridget and her family. Bridget is courageously battling cancer and Peter and I have always been fond of her and her entire family. Bridget's mom, Cathy, writes to me every holiday, and today was no exception. Some of my faithful readers may recall that I had a chance to reconnect with Bridget during Mattie Miracle's Chocolate Therapy workshop at the hospital in October. Cathy wanted me to know that our littlest and brightest star was being remembered today and also how much Bridget enjoyed my visit with her in the hospital. I still recall that visit because Bridget introduced me to her doctors as Mom #2! That made me feel very good and I only wish Bridget and her family never saw and experienced the insides of a pediatric oncology unit and clinic!

I want to thank so many of our near and dear friends who contributed to Mattie Miracle this holiday season. I can't think of a better gift you could have given us! It is deeply appreciated and we value your support. Along the way today, my lifetime friend Karen wrote to me and said she wished for Christmas she could clone me. I took that as a high compliment and it is feedback and caring messages like this that truly help grievers become reinvested in the world.