Wednesday, October 23, 2013

Wednesday, October 23, 2013

Tonight's picture was taken in October of 2008. Mattie was in the child life playroom with his big buddy Brandon. Though there was a significant age difference between the two of them, they understood each other and Mattie really valued the connection he had with Brandon. As you can see here, the boys were building a storage unit out of popsicle sticks for many of Mattie's hot wheel cars. Art projects like this were very therapeutic for Mattie. They got Mattie out of his room and interacting with people. Something he refused to do quite often as his treatment progressed.


Quote of the day: So often survivors have had their experiences denied, trivialized, or distorted. Writing is an important avenue for healing because it gives you the opportunity to define your own reality. You can say: This did happen to me. It was that bad. ~ Ellen Bass

Today we visited the Arboretum. I have been to it before as a teenager and then once with Mattie. The Arboretum is located in historic Rancho Santa Anita. The Los Angeles County Arboretum and Botanic Garden is a unique 127 acre botanical garden and historical site jointly operated by the Los Angeles Arboretum Foundation and the Los Angeles County Department of Parks and Recreation and located in the city of Arcadia.  Home to plant collections from all over the world, including many rare and endangered species. The Arboretum also houses outdoor historical landmarks representative of the major phases of California history. Upon entering the Arboretum, we were all greeted by this adorable Kermit the Frog carved pumpkin. 

One of the amazing aspects of the Arboretum is its free roaming peacocks and peahens! Mattie LOVED this feature and frankly we never got that far walking wise in the gardens because Mattie was too busy following these colorful birds!

Meet the resident Guinea Hen! This hen looks like a cross between a chicken and a vulture. But very friendly and he thinks he is a peacock! He is the ONLY remaining Guinea Hen in all of the gardens. The others died off. He too is free roaming and his origin is Africa.

A simple word to describe the Arboretum is PEACEFUL. It isn't congested, you are not fighting crowds, noise, or car traffic. You can walk for miles, and my mom and I walked over 8 miles today in the park! Here is a photo of my parents by one of the amazing fountains at the Arboretum.

My photo does not do this tree justice. It is electric. This is a Pink Silk Floss tree from South America. I have never seen such a tree but it was magnificent and an eye catcher. It is hard to believe that it is the end of October and I am surrounded by such rich greenery.

One of the gardens we explored is called the African Garden filled with all sorts of palm trees. The expanse of this palm caught our attention.

Check this tree out! Look at its trunk. I think the name of the tree is SO fitting ..... The Elephant Foot Tree!

For those of you old enough to have watched the TV show Fantasy Island, this is where it was filmed. This house was featured in the TV series for years. The official name of the house is the Queen Anne Cottage and it sits in the heart of the Arboretum. Queen Anne Cottage was constructed in 1885 and it is an ornate example of Victorian extravagance.

I showed you the pink silk floss tree above. This is a close up of the flower on a white silk floss tree. The flower almost looks and smells like a lily.

We ventured into the rose garden and it was filled with butterfly friendly plants. In fact butterflies were flying all about us. I caught one in action!

Here is an overview of the rose garden. It was simply amazing. The roses were huge, the garden was so fragrant and surrounding the roses were all sorts of citrus trees. Filled with oranges! You just wanted to pick them right off the tree. In addition to the flowers the garden was filled with lizards, bunnies, squirrels, birds, and butterflies.

Here is a close up of the Queen Anne house. Though I have visited the Arboretum before, this was my first time walking close to the house and peering inside. This house was built in the 1870s and was owned by Elias Baldwin. Nicknamed "Lucky." Lucky used this house for entertainment purposes and literally the house had NO kitchen. He lived in a nearby house on this huge piece of property but had this house constructed to entertain his guests. He purchased this property as a Mexican land grant and used it to grow citrus fruit. Fruit that was shipped all over California and eventually the US, when the transcontinental railroad was constructed. From looking through the windows, the house is beautiful inside and true to Victorian era architecture and design.

This incredible tree is a trumpet flower tree! The flowers truly look trumpet like.

This beautiful tree is a dwarf pomegranate tree. It literally stands at around five feet tall.

A family asked us to take photos of them and they were kind enough to snap a photo of us by the waterfall. Behind the waterfall are about hundred steps up. My mom and climbed up the steps to see the mountain top view. Because it was somewhat cloudy today when we got to the top, we couldn't see the mountains. But we were treated to a close encounter with a hummingbird.

I entitled this photo "The Happy Duck!" This duck was literally flapping around in the water, washing himself, and having a great old time.

Peacocks are beautiful but this particular one got the name of "The Pesky Peacock" today. He literally wouldn't leave me alone! After our long walk, we sat outside to have iced tea and something to eat. Throughout my entire meal he sat watching me, he put his head on the table, stared at me and was also making noises. Needless to say I gave him crackers because he wasn't taking NO for an answer. He occasionally would visit other tables, but for the most part he was by my side. I'm not sure what that says!!! The funny part about this is I felt like I was in the movie, Jurassic Park. You know when the dinosaurs are watching, following, and potentially attacking the park's guests. I found this peacock intimidating, especially when he was making noises at me. However after I fed him a ton of crackers he moved away from the patio and went to relax by a tree. This is an encounter I won't forget anytime soon.

Tuesday, October 22, 2013

Tuesday, October 22, 2013 -- Mattie died 214 weeks ago today.

Tonight's picture was taken in October of 2008. Given Mattie's face and that he was sitting on a stretcher, I know without a doubt that he was waiting for his sedation team to take him for a scan. When Mattie first entered Georgetown to be officially diagnosed in July of 2008, his oncologist believed that Mattie could sit through grueling scans without sedation. Keep in mind that some of Mattie's MRIs were two hours long. An MRI is daunting for an adult but it is harrowing for a child who is already anxious about all the changes in his life. In the beginning Mattie was also experiencing horrific bone pain from the cancer. So in all reality, sitting for scans, which are scary and confining, was torture for him. Which was why after the first set of scans, Mattie was introduced to Debbi, his sedation nurse angel. After that point, Mattie was sedated for every scan he was required to take. Naturally that comes with certain risks, but the mental health alternative was just as costly.


Quote of the day: I am grateful for the magic, mystery and majesty of nature – my loyal friend and companion – always there, welcoming and waiting for me to come; to be healed. ~  Tom North


Have you ever heard of Joel Osteen? I know I never had until a quote by him was spotted on Facebook today. Apparently Mr. Osteen is a preacher and televangelist. So put that into perspective. I believe this fellow was quoted on Facebook today because people were looking for some inspiration and wanted to post something that would get us to think about our own decisions, actions, and interpersonal connections.

However given that the author of this quote is a preacher, I have to say that I am THOROUGHLY troubled by what he said and even more perplexed that he thought his message would be uplifting and inspiring to any of us. Here is the quote I am referring to...........

We are responsible for helping and encouraging others, for guiding them further along, but we are not responsible for their choices. If they want to live unhappy, that’s their choice. Don’t allow them to bring you down with them.

As a person in the helping profession, it would be my hope that a preacher is NOT teaching us to WALK AWAY when the going gets tough. That people are dispensable if they do not follow our advice and heed our words. Naturally I am not naïve, I realize there are situations in life in which we sometimes get involved with toxic people. Meaning people who may not be good for us, do not have our best interest at heart, and in fact do hurtful things to us. I am NOT talking about such circumstances here. Unfortunately when such toxicity enters our lives, I do believe that the only way to seek emotional stability is to cut out the relationship. Not unlike a surgeon who cuts away cancer from the body. But this is not the dire type of circumstances I believe this quote is referring to. Instead, when I read this quote my immediate reaction is to reflect upon those of us who lost a child to cancer. Since this is the scope of this blog and this is the lens in which I view my world, it makes sense that I would apply such a quote to my own life. When I do apply the quote to my own situation and my own context, I actually despise it!

What do I mean? Well I would have to say that within the first year after Mattie died, those around me wanted to help and wanted to encourage my daily existence. The motivation for this behavior could range from people feeling gravely sorry for my loss, to those who just couldn't handle the notion of a child dying and therefore wanted to give me diversions, things to live for, and in essence make me happy and have hope. However the loss of a child is not an easy fix and therefore I did not bounce back to who I was even a year after Mattie died. Despite how hard some may have tried! For all arguments sake, I am four years into Mattie's loss, and I am well aware of the fact that the precancerous Vicki isn't coming back. This reality scared several of my close friends and believe it or not I lost them. That is a book chapter in and of itself, so I am not elaborating on this here. But in essence Osteen's quote played out in my life. When friends couldn't make me happy and instead saw that I continued to feel guilty about the notion of ever being happy again and for continuing to live without Mattie, they walked away. It was deemed by them to be my choice to remain this way and therefore they did not want my state to further bring them down. It seems to me that Osteen is saying that it is okay for us to do this to each other. That it is okay to abandon those around us for our own happiness. I was stunned when friends of almost 15 years severed our friendship after Mattie died, and I am equally stunned to hear that a preacher of all people is spouting such a doctrine.

When I talk to people now who are trying to help parents grieve the loss of a child, my number one message is to NEVER walk away. Never give up the connection you have with your friend. Keep the dialogue open, make sure your friend knows you still care, that you know the loss of a child is a life long process, and that you are there for them now and into the future. It is only by having steadfast people by a parent's side through the grieve journey that some sort of healing, coping, and the inventing of a new self emerges.

Today my parents and I drove to the town of Calabasas. The beauty of Southern California is that it truly captures the outdoors, regardless of whether we are talking about the settings for a restaurant, shopping complex, museum, or library. We had a lovely lunch outside by a fountain and were greeted by all sorts of birds. Like I used to do with Mattie, if a bird comes near me, I usually give it bread. So I had several feathered friends with me at lunch. After lunch we strolled around at this outdoor shopping complex. The complex almost looks park like with glorious flowers, plantings and park benches. There are fountains everywhere and the complex's main fountain is filled with turtles, ducks, koi, and birds. Check out these wonderful turtles stretching their necks to the sun! There were tons of turtles to watch!

Meet the fountain's lone duck!

My mom snapped a photo of me in front of a part of the fountain. In the middle of the fountain is a statue of a little boy on a row boat. It literally reminded me of Mattie going fishing with Peter. Mattie would have LOVED this fountain and all the creatures who hung out in and around it.

Mattie would have loved this frog spouting out water into the fountain. I have a feeling if Mattie were with me, I would have experienced this fountain TOTALLY differently! He would have sat on the frog and also would have gotten soaked playing in the water.

Monday, October 21, 2013

Monday, October 21, 2013

Tonight's picture was taken in October of 2008. Mattie was in the child life playroom of the hospital creating with model magic. That stuff was the ideal clay, it wasn't messy or toxic. You could mold it into any shape, color it, and then it would dry into a hard structure. That day Mattie created an under water scene and designed all sorts of creatures to go into the sea. However, Mattie's under water vision also included a bridge going over the water and if you look closely the bridge was filled with many hot wheel cars! After Legos, hot wheel cars had to be one of his favorites!


Quote of the day: Healing takes place when grievances are given ample and patient space to be acknowledged, when there is transparency and honesty, when everybody is given the chance to be heard, when nobody is excluded, when people can accept the energy of the conflict and use it as a major opportunity for growth. ~ Franco Santoro


This afternoon I ventured with my mom to her line dancing class. I think people have a misconception about line dancing. Most people associate it with country music and pop culture, i.e. the electric slide, Elvira, boot scooting boogie, and so forth. However, line dancing is actually much more complicated!!! Since I was a little girl, I have always done some form of dancing from ballet, tap dancing, and even modern dance. Though I didn't do any dancing while in graduate school (which was too many years to count), I would like to think that my years of training kick in when I am on a dance floor. Not unlike riding a bicycle. 

Last year when I visited my parents, my mom took me to her line dancing class. I was expecting to like it, after all, I was familiar with pop culture line dancing. However to my dismay I HATED her class. I mean HATED it!!! So much so that I did not want to go back today. Line dancing involves dancing to all four quadrants of the room. Why this should be so disorienting, I don't know, but for me it is! I can learn any dance step you give me in one direction, but when you face me in another direction, it is like I have amnesia. 

I did go with my mom today (who dances VERY well!) which in all reality was the result of developing some courage and realizing Rome was not built in a day. No one likes to look helpless and stupid in front of others!!! Fortunately my mom has a new teacher, who I liked a lot better than the previous teacher. Though I still had great challenges, it was slightly easier this time. I have a feeling the more one does this, the more one gets used to dancing in quadrants. Since all the people in the class know each other, they clearly could tell I was the outsider. Several asked if I took line dancing classes in DC! I thought that was a hoot, since I did not have the foggiest notion what I was doing. But I can be light on my feet which helps to conceal many mistakes! Any case, one of the participants in the class was a former college dance teacher. She told me she has been dancing for over 40 years and when she first entered this line dancing class she was totally confused and disoriented. I told her I appreciated her candor because I was perplexed as to why this is so difficult for me. This teacher also told me that line dancing is excellent stimulation for the brain, and I totally believe her. I spent two hours truly concentrating tonight.

I do think the key to doing this, like everything else in life, is not to take it too seriously. I found when I wasn't wrapped up with making mistakes that my body seemed to flow better with the music. Isn't that the truth about life too!? To give you an idea of what we did tonight, I found a you tube video of the dance "Silver Lining," which was one of several dance routines we learned tonight. It will give you a feeling for the turns and quadrants that I am talking about!   

Silver Lining Dance Routine
http://www.youtube.com/watch?v=u4bzSEmb2HE

It was another glorious weather day in Los Angeles. Sun and in the 80s! Close to 90 actually. I just can't get over how one coast can be moving into the Fall and cooler temperatures and out here things are green and lush. But people here take it for granted. On the East Coast on a day like today people would be out and about. They would want to eat lunch outside and just soak up the sunshine. It is quite different in LA. I suppose one just gets accustomed to what one has and takes it for granted. But I know that 80 degree weather in October is to be cherished and I only have a few more days of it. Whether I am on the East coast or the West coast, Mattie is gone from my life and that is a daily reality I face. But this reality combined with cold weather and greyness somehow magnifies the sadness and depression that comes from the absence of such a beautiful seven year old life force.
 

Sunday, October 20, 2013

Sunday, October 20, 2013

Tonight's picture was taken in October of 2008 after Mattie's first limb salvaging surgery. That week someone gave Mattie a book entitled, "Stinky Cheese Man." Mattie thought that was down right hysterical! So much so, that it inspired him to create his own stinky cheese man made out of blue foam! It is ironic that last week as I was cleaning out Mattie's book shelves, to donate hundreds of books, I came across "Stinky Cheese Man." It brought me right back to this moment in time.


Quote of the day: The healing power of even the most microscopic exchange with someone who knows in a flash precisely what you're talking about because she experienced that thing too cannot be overestimated. ~ Cheryl Strayed


This afternoon my parents and I went to see the play Dr. Jekyll and Mr. Hyde. I have to admit I never read the novella or even saw the movie with Spencer Tracy. Naturally whether one is familiar with the story or not, in some shape or form, we have all used the term...... Dr. Jekyll and Mr. Hyde in our daily lexicon. Especially when we are dealing with people who appear to have two sides to them. This play is all about good versus evil and the conflict this causes inside of us. Yet from my clinical perspective this play is far more complex than this, mainly because the alter ego of our main character, Dr. Jekyll, is drug induced. As if this drug unleashed what could be potentially inside of all of us. A frightening notion really when you consider the main character brutally attacked and killed multiple people in gruesome ways. Are we all really capable of this? If that isn't frightening enough to think about, what is even more perplexing is once Dr. Jekyll stopped using drugs why didn't the evil die away? Needless to say the premise of this play bothered me intensely because what it was trying to imply is that evil is stronger than goodness and will win out every time.

Certainly in our daily lives we see aspects of evil all around us, and yet despite the evil, there are also moments of greatness, kindness, and compassion to help combat this negativity. I believe this is a philosophical difference in how each of us sees the world which is most likely why I gravitate to Disney and Hallmark movies. Goodness must always trump evil! Naturally I know this isn't true in reality, but if we do not have this hope then I frankly think day to day existence becomes impossible.

Here is a synopsis of today's play: Dr. Jekyll and Mr. Hyde was adapted by Jeffrey Hatcher, from the novella Strange Case of Dr. Jekyll and Mr. Hyde by Robert Louis Stevenson. A new and shocking version of Robert Louis Stevenson's classic tale of depravity, lust, love and horror. On the fog-bound streets of Victorian-era London, Henry Jekyll's experiments with exotic "powders and tinctures" have brought forth his other self—Edward Hyde, a sensualist and villain free to commit the sins Jekyll is too civilized to comprehend. When Hyde meets a woman who stirs his interest, Jekyll fears for her life and decides to end his experiments. But Hyde has other ideas, and so the two sides battle each other in a deadly game of cat-and-mouse to determine who shall be the master and who his slave. With multiple Hydes portrayed by members of the cast.

This play was well acted but I have to say it was confusing at first. Mainly because the character of Mr. Hyde was acted out by every member of the cast. So you would see Dr. Jekyll transform, but instead of that character resuming as Mr. Hyde, another member of the cast would take over. So literally every cast member played two or three different roles in the play. With NO costume or set changes and no intermissions. So you have to really pay attention because the actors are constantly switching parts!

We all left the play feeling DOWN about life and human nature. I am not saying this is not a fact of life depicted in the play, but sometimes seeing it acted out in front of me isn't helpful. After Mattie died I prefer more uplifting stories and stories which inspire you to life not question why you are living. This evening we are meeting a friend and colleague of my dad's who lives in London. We saw John recently in August when we flew to Heathrow. So it is very unusual for me to be seeing him again so soon. Needless to say it is my hope that dinner is a change of pace from the macabre and gruesome of today's play.
 

Saturday, October 19, 2013

Saturday, October 19, 2013

Tonight's picture was taken in October of 2008. Mattie was in the clinic and had been working on the cardboard box structure you see in front of him. Mattie, with the help of his art therapists (Jenny and Jessie), transformed a simple brown box to an amazing haunted house. That house was an incredible work of art and it even had a flying witch inside the house! Mattie was holding the witch for this photo. We got a lot of play time out of this box, as we did with all of Mattie's boxed creations. Mattie loved imaginative play and he also loved to create his play environments. I wish back then I kept every box and took a photo of all his creations side by side. They were an impressive collection! 


Quote of the day: Listening to one's self as well as to others is a sacred act of healing. There is a higher octave of listening that hears the wisdom within the words. ~ Cheryl Hamada


My parents had a neighborhood committee meeting at their home this morning. I met a fellow who lives in their community and my parents told me before he arrived that he is a commercial airline pilot. A made a mental note of that, but while the meeting was going on I remained in another room working on the computer. After the meeting was over, I happened to ask my mom what the pilot's last name was, I am not sure why, but I asked. I learned his last name is Cooper. Well I immediately stopped in my tracks because guess what the name of the pilot was who flew me from DC to Los Angeles? It too was Cooper and I flew on the same airline in which he is a pilot. I distinctly remember his last name because after hearing it announced, I thought of Mattie's friend Campbell Cooper! What are the chances that I would meet the pilot that flew my plane?! I am not sure why that intrigues me. Maybe because I HATE flying! Flying across the country on Monday was very turbulent. In fact, the turbulence did not show up on the radar and the pilot took to the loud speaker several times letting us know he was trying to adjust our altitude to give us a smoother ride. At one point we were at 36,000 feet and the plane felt like it was free falling to 30,000 feet to get us out of the choppiness. That is why I said..... THANK goodness for Dramamine on Monday's blog. But the pilot's voice caught my attention today. Mainly because his speech is notable. His demeanor is very calm, patient, and seems to be able to defuse tension. This is the same feeling I had while listening to the pilot over the loud speaker on Monday's flight.

This evening we went to see a community play entitled, Awake and Sing. The play premiered on Broadway on February 19, 1935. Basically in a nutshell the play is set in the Bronx (New York), and it gives us an up close and personal view of the Berger family and the first generation ideals of their matriarch Bessie. Her pursuit of the American dream, one that is reflected in community standing and keeping up appearances, could dominate her family's idealization of love with possible tragic consequences. This play may have premiered in the 1930s, but it is more than relevant today in its revolutionary portrayal of the rifts that develop between parents and children and the younger generation's struggle for independence and the freedom to choose.

Bessie's character is beyond dysfunctional as she tries to control the lives and movements of each of her family members living in her apartment. The list of family members was extensive: her husband, two children, her father, and a boarder all living under one roof. How all these people fit in such a tiny space is amazing but what the play clearly illustrated was using manipulation, control, and at times deception when raising a family not only doesn't work but it can come back and haunt you.

It was an interesting psychological profile of a family that reminds us that one dysfunctional and unstable individual can indeed pollute an entire family system. What I found particularly awful is how the play ended. In the end Bessie's daughter (Hennie, who was controlled by her mom and forced to marry a man she did not love) decides to run away with another man, leaving behind a husband who was devoted to her. The catch was to leave with this other man Hennie had to leave her baby behind. Behind to be cared for by her mother, a woman we already know reeked havoc on one generation of children. The man Hennie decided to run away with was an amputee, he lost his leg in the war. He tells Hennie that when he had to get his leg amputated his doctor said, "you just cut it off and live your life." In essence he said she had to do the same thing regarding her child (cut it out), in order to lead a happier life. Needless to say this decision and the cavalier and expendable nature of a child's life were disturbing to me.

Awake and Sing is quite telling because when you hear the play's dialogue and disagreements about politics, what families argue about, and the stresses upon individuals, couples, and families it is quite apparent that some things haven't change much since the 1930s. That alone is a scary and revealing notion!
 

Friday, October 18, 2013

Friday, October 18, 2013

Tonight's picture was taken in October of 2008. Mattie went to visit his "girlfriend" Charlotte at her house. Mattie and Charlotte met each other in kindergarten and took an instant liking to one another. Mattie had a way of making Charlotte laugh, and Charlotte's laugh was contagious. I can clearly remember the fun they had together and as you can see this was just one of their many antics together (look closely, Charlotte was behind Mattie). Mattie did not understand what a girlfriend actually was, but he referred to Charlotte as his girlfriend and he even gave her an engagement ring (a ring he got at the dentist office for a good cleaning)! It is ironic to me that in Mattie's short seven years that he would grow so attached to someone, as if on some level he knew he had to pack a lot in while living on this earth.  


Quote of the day: Some of you say, "Joy is greater than sorrow," and others say, "Nay, sorrow is the greater." But I say unto you, they are inseparable. Together they come, and when one sits, alone with you at your board, remember that the other is asleep upon your bed. ~ Kahlil Gibran

My mom and I went for a walk today and on our return back home this was our sighting! Two LA Cappuccinos! These deer blend in so beautifully into the terrain it is almost hard to see them. But there are two in this photo and the one closest to the sidewalk kept a close eye on us! These black tail deer are SO different from the white tail deer we occasionally see when walking nature trails in Virginia or Maryland. Needless to say, what I love about these LA deer is the simple fact that they are comfortable with their human residents and the deer and residents seem to respect each other.

This afternoon we met a long time friend and colleague of my dad's. In fact, I have known this individual since I was in high school. They have been through highs and lows together and as such when they can, they meet altogether for a weekly lunch. Each time I visit Los Angeles, I have the opportunity to join in on these lunches. The ironic part about this is the lunches occur at Mattie's favorite restaurant. What Mattie liked about this restaurant, wasn't necessarily the food (Mattie wasn't motivated by food like I am!), instead he was drawn to the lion head shaped fountain on the patio. Mattie loved sitting right next to the fountain. The fountain was the necessary distraction I needed to keep Mattie motivated to eat! Mattie was intrigued by water and simply loved playing right beside it! Of course Mattie wasn't with us today, but somehow his spirit seems to exist for me right by the fountain.

After lunch we visited our local mall and walked around and went into some of the stores. In one of the stores they were featuring lovely velvet dresses. The salesperson mentioned to us that she just tried on this dress and it would be a lovely item to have for the holidays. There was that KEYWORD that I don't care for...... holidays. Hearing the word was an immediate turn off to me, because instinctively my reaction is that.............. holidays are not to be celebrated!!!!

I was talking to my friend in cancer last week and she mentioned to me that a friend suggested she develop a plan for how she wants to acknowledge and celebrate this upcoming Christmas season. This will be her first Christmas without her son!!! Honestly the feedback she received struck a chord with me as soon as I heard it and now over a week later, hearing the word HOLIDAY retriggered the same conversation I recently had with her. I am not sure what the answer is for those of us who lost an only child to cancer. How do we celebrate the holidays? Is there a better strategy to manage the holidays? Does one thing work over the other?! Frankly this December will be our fifth Christmas without Mattie and I have yet to find the answer for what works. But I know what doesn't work.... feeling pressure from others, being judged one way or another, and certainly over time I have found that the internal conflict of spending time with others during this season becomes more complex. Complex because part of me hates the holidays and doesn't want to see others celebrating it with their families, and the other part of me wants to feel like I am part of the world and wants to be included in holiday parties and gatherings. I know over time my friends are equally confused about how to deal with me as well, mainly because sometimes certain venues work for me and at other times they make me more depressed. Any case, I realize we are in October and I had no intention of even talking about holidays on tonight's blog, but I have found after Mattie's death certain words are real triggers for me, and this innocent commentary for today's store clerk was anything but ordinary to me!  

Thursday, October 17, 2013

Thursday, October 17, 2013

Tonight's picture was taken in October of 2008. I will never forget that particular weekend. We took Mattie to the Inner Harbor of Baltimore. It was the weekend before his first limb salvaging surgery and we were all on the edge, stressed out, and uncertain of what the future held. Notice in Mattie's right hand that he was holding a Lego structure he constructed over lunch. We sat by the water that day eating, or I should say Peter and I ate, and Mattie was legoing!


Quote of the day: If there is one thing I'd learned about hospitals, it's that they aren't interested in healing you. They are interested in stabilizing you, and then everyone is supposed to move on. They go to stabilize some more people, and you go off to do whatever you do. Healing, if it happens at all, is done on your own, long after the hospital has submitted your final insurance paperwork. ~  Eric Nuzum


This morning our October newsletter for the Mattie Miracle Cancer Foundation was distributed to all of our donors on-line! It is truly remarkable how far reaching this newsletter has become with a growing supporter base of close to 1500 people. I personally love when I see people sharing our newsletters with others on-line and of course promoting our articles through their own electronic networks and communities. I was thrilled to see our chocolatier, Robbin Warner, post our newsletter article on her blog:
http://www.writingwithchocolate.com/2013/10/chocolate-therapy-workshop-at-the-pediatric-lombardi-clinic-of-georgetown-university-hospital/

This afternoon, we drove to San Marino and my parents introduced me to a new restaurant I have never been to before. The restaurant was situated on this beautiful tree lined street. Honestly when I looked at these trees (in this photo) they reminded me of broccoli. Peter says I see the world in terms of food! Perhaps I do!!!

It was another absolutely beautiful weather day in Los Angeles. In the 80s, with sun, and not a cloud in the sky. We sat outside for lunch and to me there is nothing like fresh air. It makes food and everything seem better. This is one of the things I really dislike about winter on the East coast, being trapped inside.

After lunch we went to see the movie Gravity. For my faithful readers, you know I am NOT a movie goer at all. I don't like the loud noises, the darkness, and being enclosed in a space with a lot of people. All side effects or anxieties, however you want to couch it, that developed after Mattie battled cancer and then died. In addition to having issues with the physical environment, I typically do not like the plots or lack there of within modern day movies.

Gravity is a 3D movie. I am sure this is a wonderful feature for most people, however, as a person who struggles with motion sickness, such a movie is not a good match. Especially this particular movie which involves things flying at you while they are twirling around in space. In addition to objects twirling, there are also astronauts tumbling ALL over the place. It takes your stomach on a wild ride and the sound effects at times are deafening.

I imagine critics are in love with Gravity because of the amazing special effects and the incredible simulation of being in space and the complexities associated with living with NO gravity. Yet for me, the special effects are NOT what caught my attention about the movie. Instead it was the plot, and in all reality there were really two plot lines going on simultaneously. The obvious one in which astronauts are sent up into space to repair the Hubble telescope but in the process are attacked by satellite debris disabling their shuttle and killing all crew members except for two, these two main characters are played by Sandra Bullock and George Clooney. Watching the death defying feat of these main characters was almost hard to believe much less watch but then of course reality sets in...... they may never make it back to earth. The fight for survival, safety, and getting home then ensues. Of course this isn't an easy journey and each twist and turn is met with more agonizing realities, it is like watching a train wreck happening except in their case no one is there to witness it with them and share in the horror for emotional support.

Putting that plot aside, comes the deeper more existential plot. We learn that Sandra Bullock, who plays a medical engineer on the mission, is really struggling with her own life and death quandary. When she was asked by Clooney who she wants to get back to earth for, who will miss her if she is gone, she pauses. She goes on to tell us a story about how she had a four year old daughter, Sarah. She was driving to work one day when Sarah's school called her to tell her that her daughter had a freak playground accident and died. The key words here are driving and dying. Sandra Bullock goes on to say that her life now, NOW THAT HER ONLY CHILD DIED, consists of waking up, going to work, and driving (which she uses as her diversion and is therapeutic)!!!! This may have been my favorite line in the whole movie. It portrays the loss of an only child so beautifully, accurately, and cuts to the heart of the matter. The matter being that there is nothing to ground one to this world anymore, there is no purpose, meaning, or direction when you lose a child. Therefore when Sandra Bullock's character is up in space, in my perspective, space is her biggest diversion! Throughout Sandra Bullock's battle to return to earth, the question really is, does she want to??! Or does this accident give her the opportunity she has been looking for to become reunited with Sarah and one with space? I wont say anymore about the plot assuming some of you may want to see this movie.

But like my lifetime friend Karen said to me tonight, there is just NO escaping the death of Mattie for me. Not even in a movie. I relate to what Karen is saying to me and yet, I appreciated the quest that Sandra Bullock was facing, dialoguing about, and sharing with our society of movie goers. These are real life issues that those of us who face the death of a child contend with on a daily basis and as Sandra Bullock reveals in her actions, we have two choices...... to give up or to find a way through the pain and keep living.
 

Wednesday, October 16, 2013

Wednesday, October 16, 2013

Tonight's picture was taken in October of 2008. As you can see Mattie was playing a keyboard. This keyboard was given to him by Jerry and Nancy! Jerry and Nancy work together as music volunteers at the Hospital. In fact, we met them during Mattie's very first week of treatment. Their music, entertainment, and conversation really made a difference to us that evening, the evening when Mattie was to start his very first chemotherapy. For just a short moment in time we all felt normal, we forgot we were in a PICU, and there was laughter in the room. The power of music! Over time, Jerry and Nancy became friends of ours and would do a "Name that Tune" game with Mattie. Mattie loved the game because Jerry always played songs Mattie knew! Jerry and I worked that out ahead of time through emails, so that Mattie would feel happy and good about his guessing! This was a very generous and thoughtful gift from Jerry and Nancy. A gift we held onto for a very long time. However, on Friday, October 4, when Peter and I visited Georgetown, we donated the keyboard back to the Hospital for other kids to enjoy. Jerry and Nancy loved this decision and hopefully music will continue to live on in the pediatric units.


Quote of the day: We don't heal in isolation, but in community. ~ S. Kelley Harrell

Today my mom and I ventured to the Huntington Library and Gardens in San Marino, California. Close to Pasadena! This is another gorgeous museum. In so many ways because of California's climate, museums can really provide incredible outdoor spaces in which one can appreciate nature and the intricate beauty that it provides. A visit to a museum in Southern California is a treat that goes beyond the confines of four walls. I absolutely love the greenery and gardens as well as the mountainous terrain. We haven't visited this museum since Mattie died! Mattie loved the outdoor component and the gardens, but since we haven't been to this museum in five years, a lot has changed. It is under construction and honestly none of the buildings look the same. Fortunately the outdoors gardens are intact and still beautiful.

We saw two exhibits today at the Huntington. The first was entitled, Face to Face: Flanders, Florence, and Renaissance Painting. It was a small and intimate exhibit but powerful. While many exhibitions have shed light on the beauty of Flemish 15th-century painting, and even more have celebrated the glory of Italian Renaissance art, “Face to Face: Flanders, Florence, and Renaissance Painting” is the first in the United States to explore how Flemish artists helped make the innovative, sophisticated, and beautiful works of the Italian Renaissance possible. With 29 paintings and about six illuminated manuscripts by artists such as Jan van Eyck, Hans Memling, Pietro Perugino, and Domenico Ghirlandaio drawn from The Huntington’s collections and those of several other institutions in the United States and Europe. Bringing together works from Galleria degli Uffizi, Florence; the National Gallery of Ireland, Dublin; and the Museum of Fine Arts, Boston, among others, “Face to Face” juxtaposes Flemish and Italian works in thematic groupings, exploring the form of the diptych (is any object with two flat plates attached at a hinge), the depiction of the face of Christ, the evolution of portraiture, elements of landscape painting, and the virtuosic rendering of forms and textures.

My mom and I learned a lot from this exhibit. I had no idea the incredible influence the Flemish had on the world of art in Italy. The Flemish introduced the Italians to oil paints, the beauty of including landscapes within portraits, as well as painting people straight on versus in profile.

The next exhibit we saw was entitled, Junipero Serra and the legacies of the California missions. I have to admit I must have missed something in my educational career. I even went to high school in California, but I assure you I had no idea who Junipero Serra was until today. This exhibit is highly thought provoking, it brings up many politically challenging topics, and frankly leaves you feeling disillusioned. Whenever I learn about people persecuting others, taking away their freedoms to be, live, and have their own values and beliefs, I become disgusted and disheartened about the human race.

I will give you a brief description of the exhibit so you can put this into context, but then I will share with you the highlight of our  visit...... a chance encounter with a full blooded Apache Native American! A FIRST for me!!!

The exhibit description:
Learning about California's missions is a rite of passage for California's fourth graders and their parents. Yet few might realize that Junipero Serra, the Franciscan priest who founded many of the missions, was already 55 years old by the time he came to California in 1769, a milestone preceded by decades of service in Spain and Mexico.

The exhibition also provides the backdrop against which the missions emerged: early California was home to numerous and diverse groups of Indians for millennia before the Spanish arrived. Culture and customs varied from village to village, Indians in California spoke more than 100 languages and Indians in the parts of California colonized by Spain numbered nearly 70,000.

Serra, under the auspices of the Catholic Church and the Spanish flag and in keeping with a centuries-old tradition of Spanish missionaries coming to the Americas, believed his life's work was to convert Indians to Christianity. The missions were vibrant outposts of European culture and an expression of a Catholic spiritual ideal. But they also were shaped by the Indians who lived in them. Further still, missions had a darker side. In many ways they were coercive, and Serra's work encouraging California Indians to relocate to the missions ultimately led thousands to early graves, as diseases killed many who came to live there as well as many more born in the Franciscan establishments.


This exhibit was quite big and was housed in over 5 rooms. When my mom and I comb through an exhibit, we can be there for hours. We read all the signs, documentation, and view the art. We usually land up chatting about it along the way as well. I suppose we are a curator's dream! Not everyone shares our love for spending time learning about the art. Needless to say, this exhibit was emotionally charged, but needless to say, without personal context, sometimes it is hard to get the true magnitude of what you are reading.

That instantly changed for me when a man walked up to us and started talking to us. This man's name was David and he is a full blooded Apache Native American, born on a reservation in Texas. We learned that ONLY 11 people remain from his group because the rest were killed. David shared with us aspects of his life, how alcoholism impacted the lives of his grandparents and how at a young age he was separated from his parents and family and forced to attend a school in which he had to learn Catholicism. His stories of coercion and abuse were almost too hard to listen to and frankly it made you pause and ask yourself WHAT COUNTRY AM I LIVING IN?!!! But here is the next best kept secret, or at least it was to me. Native Americans are considered US citizens, however, if one is born on a Native American reservation, then you are NOT allowed to vote!!! I repeat, David has NO voting rights despite working and paying taxes and being a citizen. I was speechless and came home tonight to verify what he reported. Unfortunately what he reported is correct.

I suppose why history was never one of my favorite subjects in school, was because of how it is taught. It was taught to me in a matter of fact kind of way with dates, wars, and so forth. But history comes alive when you hear a personal story and in so many ways meeting David brought history alive for me. Though I wanted to refute what I was reading in the exhibit, I found after talking with David for 45 minutes, that this was impossible. David was working the security detail at the exhibit and while we were there, I did hear him talking to other people throughout the day. I could hear people thanking him for sharing his story with them. Nonetheless, David related to my mom and I, and he felt comfortable sharing his history with us.

Toward the end of our encounter, he told me I had a glow! I asked him what that actually meant and he said that meant I am a happy person, happy about my life and so forth. Of which point I laughed and told him this couldn't be the furthest from the truth. I then told him about Mattie and our loss. David then held my hands and in the middle of the exhibit literally gave a blessing to me and Mattie in his native tongue. The premise of the blessing was for Mattie to know he is loved and that I should know that he always walks beside me. It was a very touching and meaningful prayer and it left my mom and I both crying. Needless to say this was a visit to the Huntington Library which I would never have expected, but one I won't be forgetting anytime soon.

The amazing part about David is he could be bitter, hostile, and angry at the world. Certainly given how he has been treated and is still treated today, this would be justified. But he doesn't seem to exude any of these traits, instead, he is calm and uses his experiences to educate others. As he said to us today, we are the change agents. One person at a time. Very meaningful and I believe even though I have no idea what it is like to be Native American, we related to each other. We both experienced loss on some level and a loss to our identity. Certainly in drastically different manners, but once again, I experienced first hand how loss bonds people together.

After our heavy visit to the Museum, this was one of the glorious California Mountain sighting we had while driving home. These crystal clear skies are not necessarily typical for Southern California because of smog. But the past three days have been glorious, so much so that you want to bottle it up so that every day could be just this beautiful.

Tuesday, October 15, 2013

Tuesday, October 15, 2013 -- Mattie died 213 weeks ago today.

Tonight's picture was taken in October of 2008. This has to be one of my favorite hospital photos of Mattie. It was taken by his preschool teacher and our friend, Margaret. Margaret came to visit us on a Friday. I know it was a Friday because Mattie was participating in the chemistry club's experiment. Chemistry Club always visited on Fridays! Mattie looked forward to it and he really liked Chris, the President of the Club! That day Chris brought in roses, and as you can see Mattie was holding a rose and smelling it! He did not realize Margaret was watching him when she captured this photo. The experiment that day was to drop a rose into dry ice and then throw it on the floor. Chris demonstrated and showed the kids that dry ice instantly freezes objects and when thrown on the floor, the rose broke into thousands of pieces. Mattie was fascinated by what he saw but he did not want to try the experiment and part with the rose he received. That rose came into our room that day, despite the NO flower policy in the PICU.


Quote of the day: Often it isn’t the initiating trauma that creates seemingly insurmountable pain, but the lack of support after. ~ S. Kelley Harrell

My morning began with a deer sighting. However this time I did not need to venture far to see one. I literally walked down the stairs in my pajamas and looked out the window. I was stunned to see a deer eating my parent's rose bush. This LA Cappuccino (which is the nickname I have given to the black tailed deer that live in the hills that surround my parent's house) wasn't startled to see me, in fact he just kept walking around the yard. So I ran back upstairs for my camera. When I came down, he was clearly on the move and therefore this resulted in a blurry photo. Yet I think you get the gist of what I saw. A deer sighting in a residential neighborhood seems SO odd to me and unnatural. After all, I live in the heart of DC, where this never happens! When I saw this deer, all I could think of was what in this picture doesn't belong!!!!!!!!!!!!!!!?

My mom and I had an adventure today to an extraordinary museum called the Getty Center. Living in DC, I have access to some of our Country's best museums. Yet, I would have to say the Getty Center may be my all time favorite museum I have ever been to. Why? The museum is tucked away high above the hills. This makes it special, scenic, private, and serene. Honestly the beauty inside the museum is well matched to the beauty that surrounds the museum. The museum has breathtaking gardens, panoramic views, fountains everywhere, and space to sit and take all of this in.

I snapped this photo on the museum's tram. Literally you park your car at the bottom of the mountain and then you take a tram up the side of the mountain to the top. It gives you an amazing view of the city on a clear day, like today. Keep in mind that a trip to the Getty is FREE, it is paid for by the Getty Foundation. It is a true gift that J. Paul Getty has left behind to our Country.

In this photo you can see the rails of the Tram, the 405 freeway, and as we kept on climbing by tram, we left the traffic and chaos behind for peace, quiet, and beauty.

This is the entrance to the Getty Center. Though it is a very modern structure, it is not cold or uninviting. On the contrary, the expanse of the space, along with the sound of the water provides instant relief to stress and anxiety.

Once on top of the mountain, it is hard to know what to look at first. The Getty Center is surrounded by mountains, vegetation, and it has gardens that capture your attention immediately.

Today was such a clear day we could even see the island of Catalina, the land of the flying fish, from the Museum. This is a rarity since with LA's typical smog, it is hard to see into the distance. But today was crystal clear and beautiful.

One of the Gardens!

We toured around the Museum today and saw several photography exhibits, but at 1:30pm, we took a guided tour of a special exhibit entitled, Canterbury and St. Albans. This exhibit featured stained glass windows and a prayer book. That may not sound so special, but these are items most people will never get to see in their life time (especially the prayer book which is typically not on public view). The windows and prayer book share only the following three things in common: they are from England, they were constructed in the middle ages, and both are being conserved. Photos were NOT allowed inside the exhibit, so instead, I went on line tonight and downloaded several photos for you to see from Getty's website. I hope you enjoy these incredible sights from the 12th century!

Around 900 years ago, if you were a European peasant or serf, you were almost certainly unable to read. But you were expected to be a good Christian anyway—which meant knowing the basic stories and scriptures and characters of the bible. How did you manage?  Well, it has a lot to do with the art of the European Middle Ages—in fact, that was what most of the art of that time and place was for. As one early churchman put it, “The pictures are the poor man’s bible.” The stories that were preached every Sunday were draped across your vision in the hues of stained-glass portrayals in the windows that surrounded you in church. It was said that “Each picture is a lesson to the viewer."

Commentary from the Exhibit's designer:

On the surface, Canterbury and St. Albans: Treasures from Church and Cloister seems like a simple exhibition to design. There are just two artworks in the show, stained glass from Canterbury Cathedral and a single book, the St. Albans Psalter. The reality is that this was one of the most complex exhibitions I’ve ever handled as an exhibition designer. Canterbury and St. Albans is the result of a rare coincidence. One 12^th-century stained glass window nearly fifteen feet tall, two partial windows, and two centerpieces had been removed from Canterbury Cathedral and would be loaned to the Getty. The St. Albans Psalter, on loan from the Cathedral Library in Hildesheim, Germany, had been disbound for conservation, which presented the opportunity to show nearly seventy of its pages simultaneously. For me, what was most intriguing about this pairing was that the monumental paintings of the stained glass and the intimate illuminations of the psalter share the same drawing styles and gestures. The overarching goal of the exhibition would be to allow visitors to look at the pages of the book and the stained glass at the same time and notice these remarkable similarities.

These surviving 12th-century windows from Canterbury Cathedral (6 out of 43 are displayed) representing the ancestors of Christ are among the oldest panels of stained glass in England. They are significant examples of what was at the time a relatively new art—monumental stained glass. Depicting male ancestors of Christ, the images constitute a series that was originally housed in the top section of a wall ringing the eastern end of the cathedral. Made of colored glass with details of the faces and costumes painted on the surface, the windows show imposing, life-sized seated figures that are considered to be among the most famous works of English medieval painting. Normally installed high in the walls of the cathedral, the figures are displayed at a lower level in this exhibition, allowing visitors to get a rare close-up look at the glass and a fuller appreciation for the skills of medieval glass painters.

NOTE: We learned that to get the paint to stick to this glass they achieved this goal by using either wine or urine!!! Quite a commentary no?

The St. Albans Psalter is one of the most extraordinary manuscripts produced in 12th-century England. Written in Latin, the St. Albans Psalter contains more than two hundred initials with pictures that give visual form to the accompanying prayers. Letterforms teem with human figures, animals, and demonic creatures that provide a literal illustration of particular lines from the psalms. Completed within a decade of 1130, the book is prefaced by an extended cycle of full-page pictures of Old Testament scenes and events from the life of Christ. Forty luxuriously painted, full-page illuminations serve as a preface to the written prayers in the St. Albans Psalter.

Note: It was thought that this beautiful book was created as a gift for a nun by the name of Catherine Markyate of St. Albans! Clearly a very special woman who was known by those in her town to have a special calling and later deemed a saint.

As we were driving home from the Museum, I snapped a photo of "The Valley." When I moved to LA with my parents in the 1980s, LA was famous for its valley. In fact, the term valley girl was big back then. In theory I was a valley girl because I literally lived in this valley, but naturally I never sounded or looked the part! Normally the valley is a basin of smog. But today it was crystal clear, so clear you could even see a plane flying in (left hand speck at the 9pm position!).

Over dinner tonight, we shared the highlights of our day with my dad. We talked about all sorts of things and then my dad happened to ask me about the challenges of a PhD program. He wanted to know if I still remember the stresses of the experience. Particularly he wanted to know what are obstacles students run into. There are plenty I assure you, and many of them are not even academic in nature! It takes political savvy and determination to get a doctorate, and I know why many students never complete the degree. In fact, after I graduated I spent several years researching this and also lecturing and mentoring female students through this daunting nightmare. So the answer to my dad's question is..... yes, I will always remember the blood, sweat, and tears it took to get my degree, but unfortunately I can put even that nightmare of an experience into context. My viewpoint is much different now, now that I have experienced the trauma of Mattie's diagnosis and death, all other things seem to pale in comparison.