Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 Success!!!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

August 23, 2014

Saturday, August 23, 2014

Saturday, August 23, 2014

Tonight's picture was taken in March of 2003. Mattie was 11 months old visiting the beautiful gardens of the Huntington Museum in Los Angeles. The backdrop of this photo always reminds me of some sort of Monet painting, even though we were actually standing in the Japanese gardens at the Museum. 




Quote of the day: Life isn't about getting and having, it’s about giving and being.Kevin Kruse


Tonight's quote seems very poignant given the museum I went to visit today! I lived in Los Angeles as a teenager and of course have visited my parents throughout the course of my entire life and yet this is the first time I have visited the Nethercutt Museum. This is a very special and unique museum. What captures your immediate attention is admission is absolutely free! Now in DC that is NOT unusual, but anywhere outside of DC, this is RARE! Nonetheless, given the caliber of this exhibit and the rare sights inside, this Museum is a gem! Actually worth an admission price if one was charged! But as Kruse's quote points out, life is about giving and being and the Nethercutt family understand this philosophy and share the beauty of things they have collected and restored over the years with the public for free. The Nethercutts made their money originally through cosmetics, The Merle Norman Cosmetic Industry to be exact. The history of the family, in my opinion is worth reading about and I included the story below to give you context to what I was seeing. Understand that the family made their money through cosmetics, but that is not what Merle Norman's nephew and grand-nephew collected!!! Try antique cars and musical devices instead!  

J.B. Nethercutt was born in South Bend, IN, on October 11, 1913, and moved to Santa Monica, CA, in 1923, to live with his aunt and founder of Merle Norman Cosmetics, Merle Nethercutt Norman. He later left his studies at the California Institute of Technology to go into business with his aunt.

On September 3, 1933, J.B. married his high school sweetheart, Dorothy Sykes. The marriage lasted more than 70 years until Dorothy’s death on October 8, 2004. It was during their early years together that J.B. and Dorothy began their love affair with old cars.

In 1956, J.B. purchased two cars: a 1936 Duesenberg Convertible Roadster for $5,000 and a 1930 DuPont Town Car for $500, both needing total refurbishing. The DuPont restoration, which J.B. estimated would take a few weeks, instead took 18 months and over $65,000. By 1958, his meticulously rebuilt project claimed its first prize — the coveted “Best of Show” award at the prestigious Pebble Beach Concours d’Elegance. By the summer of 1992, his cars had won the Pebble Beach Concours d’Elegance six times, more than any other individual. The Duesenberg and the DuPont are still part of The Nethercutt Collection.
As J.B.’s collection grew, he was determined to share his masterpieces with the public. In 1971, he and Dorothy opened a museum in the foothills of the San Gabriel Mountains, which has been free to the public since its opening.

J.B., who passed away on December 6, 2004 at the age of 91, memorably stated: “The recognition and preservation of beauty has been a major focus of my life. It would suit me well if what people remembered about me was, ‘Where he went, he left beauty behind.’”

Jack Nethercutt (JB’s son) and his wife Helen now proudly carry on the work that J.B. and Dorothy began. Early on, Jack exhibited a fondness for cars and discovered his natural abilities on the track. His sports car racing career from the 1950s and ’60s is showcased in The Nethercutt Collection’s Lower Gallery. Jack hung up his helmet to help with the family business. A University of Southern California graduate, he served as Vice President of Marketing of Merle Norman Cosmetics and later as President in 1973. He held this post for a number of years before leaving to explore other interests, including ownership of a Las Vegas, NV, restaurant.

In March 2002, Jack returned as President of Merle Norman Cosmetics. He and Helen now serve as Chairman of the Board and Vice Chairman, respectively. They also serve as Chairman of the Board and Director for The Nethercutt Collection. They continue to restore museum-quality cars, entering and winning at virtually every Concours in which their stunning cars appear.



The Nethercutt Museum showcases more than 130 of the world’s greatest antique, vintage, classic and special interest automobiles including many top winners of the Pebble Beach Concours d’Elegance (which I learned today is one of the biggest car shows in the world).

When you walk into this room, it is enormous! I am not a car person, but even I knew I was surrounded by special vehicles. Of course even if I did not, based on the reactions of the car buffs around me, I got a quick sense right away! 


Each vehicle is pristine and beautifully sign posted and detailed! Also this is a museum of FUNCTIONAL ART as our tour guide explained to us today! EVERY vehicle here WORKS and is tested yearly!!!










Mattie would have LOVED this car! This is a 1952 Hudson Hornet!!! Mattie loved the movie, Cars! In this Disney movie, there was a key character played by Paul Newman called, Hudson Hornet. I know Mattie would have absolutely enjoyed seeing a real Hudson Hornet car.






This is the 1936 Duesenberg featured in the movie, the Great Gatsby. It was a hard car to photograph because of the sunlight, but it shimmered in the window and was absolutely impressive! A real silver lady!








I naturally was captivated by this car since it shared my name! However it was owned by Rudolph Valentino (a silent movie star)! It was the 1923 "Sporting Victoria!" If you look closely, the hood ornament is a coiled cobra.


This cutie just caught my attention! It was a 1958 Vespa! I have a feeling if Mattie were with me I would have had a very difficult time keeping him out of this car!
Which maybe why there were NO children at all on the tour!





As this poster indicates this was an advertisement of the first delivery car for Merle Norman cosmetics! The 1927 "Star" was used for deliveries and it was also known as the "sweetheart car" because it was driven by JB Nethercutt and Dorothy when they were dating.

















Here is an actual photo of the "Star."















Within the Nethercutt Collections is this incredible showroom!!! Marble columns, crystal chandeliers, painted ceilings all make up this beautiful Grand Salon Showroom. A showroom which depicts a bygone era of the 1910's, 1920's and 1930's. On display are approximately 30 of the finest automobiles of that era. Duesenbergs, Cadillacs, Isotta-Fraschini, Delahaye, Minvera, Renault, Maybach, many other European and American built automobiles. You may notice SOME BOLD colored cars! Cars back then were NOT ALL BLACK! That is because there were around 4000 different manufactures and therefore the main distinguishing difference between cars was COLOR!!!

While we were in this incredible showroom we were treated to the sounds of Gershwin! Literally!!! This piano was playing in the background but it was NO ordinary piano, it was not a player piano! It is a Reproducing Piano! There is a difference. Gershwin actually recorded Rhapsody in Blues for these Reproducing Piano scrolls and the beauty of such an instrument is that it creates the impression that Gershwin is indeed present in the room with us, playing the piano himself. It was like taking a step back in time today. Surrounded by antique cars, in a 1920's show room, and with Gershwin entertaining us! Almost surreal!

In the showroom we were introduced to The 1930 Cadillac which was owned by the legendary film director Cecile B. Demille. This car cost $8750 back then. 










Also featured in the showroom is the 1930 Model G Town Car. This car is also known as Daddy Warbuck's car from the 1982 movie, Annie. In 1930, this car cost $6000. 









In addition to incredible antique cars, the Nethercutts also collected amazing musical devices. This Edison phonograph is one such device. I learned today that this phonograph is older than a Victrola, which is something I am very familiar with that plays records. But I never saw an Edison that plays cylinders. 













It only got better! We walked upstairs to their music room! All I can say is WOW! This room is filled with things I have never seen or heard of in my life. A wall of Nickelodeons! Which maybe I had heard of, perhaps, but never heard actually played! They sound a bit like a calliope. They play on their own, kind of like a piano and marching band combination all in one!



Now this term was a new one for me. I introduce you to an "Orchestrion." Have you ever heard of it? If you haven't, don't worry about it! They are usually NOT found in the USA! An orchestrion is a generic name for a machine that plays music and is designed to sound like an orchestra or band. Orchestrions may be operated by means of a large pinned cylinder or by a music roll and less commonly book music. The sound is usually produced by pipes, though they will be voiced differently from those found in a pipe organ, as well as percussion instruments. Many orchestrions contain a piano as well. Any case they are HUGE! They can take up an ENTIRE WALL!

This orchestrion was constructed in Germany and built for a hotel dining room in the Netherlands. Its purpose was for entertainment value. As our tour guide explained the orchestrions were designed to lift the spirits of people! Since they were developed during the first and second World Wars!



This is a very unique and extremely heavy piano! It weighs two tons and has 97 keys! Most pianos have 88 keys. The floor of this room had to be reinforced for this piano and understand that there is literally a computer that can operate this piano along with the Wulitzer organ in the room.





This is a Wurlitzer! There are only two instruments that originated in America. One is the banjo and the other is the Wurlitzer. This is not your typical organ that you would hear at a church per se. This is almost something you would expect to see on a movie set. In fact, in the early days before movies had sound, movie theaters had Wurlitzers. Every theater had a musician who would accompany the silent picture and add sound affects. The sound affects were added using the Wurlitzer. The Wurlitzer can do just about anything, given that it was developed in 1918! Naturally it won't make computer noises or any 21st century sound! Today's tour provided us with an incredible concert! This Wurlitzer is very unusual because it too is computerized and honestly there is no telling what it can do! 

The sound from the Wurlitzer comes out of these 5000 pipes! The room practically shook from the sound! It is an absolutely unusual museum visit of cars, instruments, concerts, and a walk through time!









Also on the campus is a shop that still sells Merle Norman Cosmetics! I snapped a photo of my parents outside the store! 
But it did not end there! There was more. There was also a vintage train to explore!!!














Pullman Palace Car Company in Chicago was founded in 1867 to build luxury sleeping cars for the railroads. Pullman's success in this venture dramatically changed rail travel worldwide. The luxuries of a private Pullman Palace Car included chandeliers, electric lighting, advanced heating and air-conditioning systems, complete bath facilities, silk draperies, luxury bedding and elegant furniture. 

In December of 1912, Clara Baldwin Stocker, eldest daughter of California pioneer, E.J. "Lucky" Baldwin, took delivery of a Pullman rail car appropriately named the California. Lucky Baldwin's fortune came from mining shares, real estate, race horses, hotels and the world renowned Santa Anita Race Track. Clara inherited his fortune and commissioned this private rail car. Clara's car was beautifully decorated in modern style with cream and gold painted staterooms, rather than the usual dark wood grained walls and ceilings. The California was a luxurious suite and can be linked to owning a private jet today.

Basically this private rail car could be attached to other passenger trains and this was how Clara comfortably got around the Country in style. This was Clara's dining room with silver ware and china!


Her Bedroom!
















Her private bath, separate from where her staff slept and worked.




















I end tonight with the 1923 "Moon!" This car cost $1785. Given that it was produced by the Moon Motor Car company, this seems like a lovely tribute to my Mattie Moon! 









Check out the hood ornament
on this car! A real Mattie Moon! Something Mattie would have approved of! I know children were not roaming around in this exhibit for good reason, but I think Mattie would have really enjoyed aspects of this adventure today! 



August 22, 2014

Friday, August 22, 2014

Friday, August 22, 2014

Tonight's picture was taken in March of 2003. Mattie was 11 months old. We took him to the Huntington Museum and Gardens in Los Angeles. This was one of my favorite photos because it appeared that neither Mattie nor Peter knew I was capturing them in action. Check out Mattie examining the bamboo, and Peter just content to have Mattie on his back! To me it was priceless. 


Quote of the day: Consider a tree for a moment. As beautiful as trees are to look at, we don't see what goes on underground - as they grow roots. Trees must develop deep roots in order to grow strong and produce their beauty. But we don't see the roots. We just see and enjoy the beauty. In much the same way, what goes on inside of us is like the roots of a tree. ~ Joyce Meyer

The other night my parents and I watched the 1945 movie, Love Letters. I happen to love old movies, and though I tend not to go to the movies and see modern days films, I would say I am a big movie buff. I am a great admirer of old films. Mostly because of their substance, plot, great actors, and diverse talents. I have heard my mom talk about Love Letters for YEARS!!! Why? Because all my life I have heard that I was named, Victoria, because my mom LOVED this movie. The irony is this is the FIRST time in my life that I ever saw this movie. I am so happy I did! 

I love Jennifer Jones (the lead actress in this movie) as an actress. I thought she was very talented and I remember seeing her in a different movie when I was a teenager. She starred in a movie about St. Bernadette. I happened to love the story of St. Bernadette, and chose this saint as my confirmation name. When I saw Jennifer Jones in the movie, The Song of Bernadette, I would say that she confirmed my saint choice for me. It very much influenced my decision as a teenager back then. Now many years later, seeing Jennifer Jones again, playing in this VERY different role, with a character who has my name was just as moving. 

I remember when Mattie was in kindergarten, his teacher gave him the assignment of finding out how he got his name. It was a big project and he had to talk with me about and write about it! We did a story about his name together! I remember the story was posted on the wall at his school, along with the other children's stories within his class. Seeing this movie reminded me of this assignment Mattie and I did together, and just like I told Mattie, understanding one's name is VERY important! A name is not just a name! It defines you, it is the first thing that people get to understand about you, it is what people remember, and in many cases, it also describes your character and personality! I know Mattie's name, Matthew, truly described him. Matthew means, "a gift from God" and Victoria means "victory." Both get at our character and strength in many ways. For those of you who are interested in old movies, I included a Love Letters plot for you below. 

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The plot of the 1945 Movie, Love Letters:


Alan Quinton (Joseph Cotten), an American soldier in Italy during World War II, has been writing letters for his friend, Roger Morland (Robert Sully), a man who admits he "never had any standards, manners or taste." Alan has never met Victoria Remington, but regards her as a "pin-up girl of the spirit," to whom he can express feelings he has never expressed in person. He realizes that Victoria has fallen in love with the letters and is concerned that she will be disappointed by the real Roger. However, Roger abruptly leaves for paratrooper training in England.

Alan is subsequently injured on the Italian front and finds out that both Roger and Victoria are dead. He is having trouble readjusting to civilian life and spending time with his fiance, Helen Wentworth (Anita Louise). He decides to live for a while at his aunt's farm in Essex. In London, his brother takes him to a party at which he meets Dilly Carson (Ann Richards) and Singleton (Jennifer Jones). He drunkenly tells them the story about falling in love with a woman he's never met, and Dilly realizes he is referring to Roger and Victoria. She tells Alan that a murder was committed and the letters were somehow involved.

While in Essex, Alan visits Longreach—the road to which he addressed all the letters—and finds out that Victoria died over a year ago. He also finds out that Roger was murdered by his wife, and Alan feels somewhat guilty. Back in London, Dilly informs him that Singleton is suffering from amnesia and is actually the real Victoria. She begs him not to tell Singleton that he was the one who wrote the letters because Victoria fell in love with Roger through the letters and married him solely based on them.

Dilly recounts that one day, she found Roger stabbed to death in the country house on Longreach, but Victoria was completely unable to remember what happened, even though she was holding the murder weapon right beside him. After a trial during which she cannot remember anything, she is sent to a prison psychiatric hospital for a year and then released into the care of Dilly. Victoria never regained her memory, and continues to now live as Singleton. Singleton realizes that Alan is in love with Victoria, but does not realize Victoria is actually herself. Regardless, Alan and Singleton marry after he gets permission from her adopted mother, Beatrice Remington (Gladys Cooper). However, their marriage is constantly scarred by Alan's love of the "other woman."

Beatrice returns to the farm and while conversing with Singleton, Singleton begins to remember the events of that fateful night: As Roger begins to drink, Victoria rereads the letters to remind herself of the man she loves and not the bitter man she sees in front of her. Roget confesses that he is not the one who wrote the letters, and he becomes abusive. Beatrice takes a knife and is the one to stab him to death as Victoria attempts to save the letters he had thrown into the fireplace.


As Alan arrives at the house, Victoria recalls her true identity and they fall into each other's arms.
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I included some photos of Los Angeles for you! These are the sights I see around my parent's home! This is their "Mountain." A very different sight for me that what I see when I look out the window in Washington, DC!















Near this location is usually where I can always spot bunnies. It is just a stone's throw from my parent's front door!


















This is my parent's persimmons tree! It is filled with fruit and during the fall, these loves will turn a beautiful orange color and will be ready to eat. 

















I end tonight with a view from my parent's backyard! You can see why the deer are happy up here in this calm and tranquil community. It is no surprise that so much wildlife can be seen here. Of course coyotes and mountain lions also exist here, and I could do without either of them!



August 21, 2014

Thursday, August 21, 2014

Thursday, August 21, 2014

Tonight's picture was taken in March of 2003. Mattie was 11 months old and in my parent's living room. Mattie saw me approaching with a camera and this caught his attention. He opened his arms out wide. I am not sure whether it was to give me a hug or to reach for the camera, but either case, I captured him in action! 


Quote of the day: The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of those depths. ~ Elisabeth Kubler-Ross



We went to see an exhibit today at the Los Angeles County Museum of Art (LACMA) entitled, Expressionism in Germany and France: From Van Gogh to Kandinsky. This is a fascinating title isn't it?! I know the Van Gogh part just jumps off the page at you! I am a Van Gogh fan as so many of us are! Which is why I am sure, people ran to LACMA to see this exhibit over the course of this year. However, I love how the LA Times described this exhibit! They say, "visitors who come to LACMA attracted by the title's celebrity names might be in for disappointment." I can appreciate that, because in all reality you are really not seeing Van Gogh. You are instead getting a cultural lesson on France and Germany and how Van Gogh's art may have touched France and thereby influenced Germany! LITERALLY! This is my synopsis in a nutshell. Putting that aside, and my suggestion for a name and title change to the exhibit, the exhibit has some fascinating lessons to be captured! Unfortunately because the rooms in which this 14 year display (with 90 paintings and 45 works on paper) is so cavernous, if you do not catch the 11:30am docent tour, you will totally miss the true nature of the exhibit. Thankfully we were able to take the tour because I honestly would not have had the foggiest notion of the connection among any of the pieces I was seeing. Things are NOT well sign posted and there is NO audio tour!

To give you some background on what the whole exhibit was about............................

Impressionism, Post-Impressionism, Neo-Impressionism, Symbolism, Fauvism — wave after wave of artistic ideas from Paris broke on Berlin's shores. The show opens with Modern French paintings acquired by collectors and museums in Germany. German artists, understandably tired of not being given the time of day, finally had enough. It's a story familiar to locales outside any powerful center for the production and distribution of important new art.

In 1905, Fritz Bleyl (1880-1966), Erich Heckel (1883-1970), Ernst Ludwig Kirchner (1880-1938) and Karl Schmidt-Rottluff (1884-1976) formed Die Brucke, which means the Bridge, as a Dresden avant-garde painters group with a mission. Emil Nolde (1867–1956) and Max Pechstein (1881–1955) joined soon after.

Except for Nolde they were all kids, the oldest barely 25. To oversimplify a bit, these young German painters kept the French feeling for color and threw away the rest. Color's irrational, unruly powers, which they felt were being restrained by stuffy, bourgeois proprieties, were unleashed.
The "bridge" they meant their art to build stretched from past to present — from the anguished bodily distortions of medieval Gothic sculpture to the stylish, pleasure-seeking denizens of urban boulevards; from the great German tradition of carved woodcut prints to the emotional tensions of convulsive modern experience.

Expressionism, an artistic movement in which pictorial imagery is depicted through dramatically expressive colors and brushwork, digresses from traditional representation in which artists attempted to recreate a likeness of reality; instead, the movement gives form to artists’ individual perceptions, feelings, and psychologies. While Expressionism has come to be recognized as a predominately German movement, this association evolved gradually long after the movement had begun and is partially attributed to the first book on 
Expressionism, authored by the German art critic Paul Fechter in 1914 and on view in the exhibition. The publication imbued the movement with a national identity, commensurate with the patriotic tone in Germany during World War I. 

In reality, Expressionism was born from a shared advance toward modernism among French and German artists as the latest French trends reached Germany through a network of collectors, critics, and art lovers, creating a mutually rich cosmopolitan milieu. Expressionists discovered new artistic possibilities through the first modern masters. They recognized expressive gesture and color in Van Gogh, nascent abstraction in C├ęzanne, and a new 
approach to the decorative in Gauguin and Matisse. Expressionism in Germany and France brings together significant works that Expressionists would have seen and carefully studied in exhibitions and collections of the time throughout Germany as well as Paris. Through a process of give and take, the Expressionists moved toward an international art while also seeking to maintain their national cultural heritage, combining tradition with aesthetic evolution.


Curators Timothy Benson and Frauke Josenhans talk about the exhibition, their research, and the impact of avant garde art being shown in France and Germany in the early 20th century: http://www.lacma.org/expressionism#video


Upon entering the exhibit you see this wonderful Quote: I once heard it said that in order to see good French (art) one has to go to Germany. ~ Max Pechstein









Van Gogh - Restaurant de la Sirene
Van Gogh painted this piece while living in Paris. This painting was quite unique and shows a very different style than we are accustomed to seeing, with Van Gogh's other works...... which usually feature heavy brush strokes, vibrant colors, and swirling patterns! 




Erich Heckel: Fear, The Prisoner, and the Prison Guard
These are woodcuts that depict the Expressionist period, evoking the pure emotion of inner turmoil and fear! The expressionist movement was designed to be a sharp contrast to impressionism! Who painted from perspective of what they saw in their environment, rather than what they felt from inside! 


Matisse: Open Window
This exhibit was enormous in size and displayed various works, which is what I am trying to show you through my photographs. I wasn't allowed to photograph many of the works on display. But hopefully the ones that I did capture, you can get the feeling for the vast array of genres here! The exhibit covered 14 years of art! This painting I share, through a power point slide show, with my kindergartner class every spring, so it was delightful to see it in person! That was a first for me. I know quite well that Matisse is the father of the Fauvism movement. Meaning that he believed in using vibrant and rich colors, but in imaginative ways. The colors did not have to be realistic. A banana did not have to be yellow for example, it could be however one imagined or wanted it to be. Which is why in this "open window" Matisse saw the ocean as pink and the sky as purple. Why not? On some days, given our mood, it may look and feel that way to us. 



Kandinsky: Murnau
Starting in 1908, Kandinsky began spending his summers in the Alpine village of Murnau. In this mountain village with its intense sunlight and deep shadows his painting style underwent a revolution. During a recent trip to Paris he discovered the style of fauvism, and it was at Murnau, that he began to perfect his own use of that style with flattened forms and vibrant colors.  



Franz Marc: Stables
Another painting group formed in Germany besides the Brucke (the bridge). They were called Blaue Reiter (or Blue Rider). They formed because people like Kandinsky were being ostracized and his paintings were being rejected from exhibition. Blue rider believed art had a spiritual dimension and the spiritual dimension many times was connected to animals. In fact, horses and riders were very much an important motif. As Marc's painting depicts. Marc was one of the founders of the Rider movement along with Kandinsky.


On our ride back to my parent's house I had my first Black Tail Deer sighting, or as I call them the LA Cappuccinos! These deer are bold and brazen, walking right in the middle of the street and eating the roses on the front lawn of a neighbor's house. 







When we returned home, awaiting us by the front door was this Lizard. Mattie would have LOVED this! In fact on the dash board of my car I have two plastic lizards of Mattie's. He loved lizards and he would have gotten a kick out of seeing the real thing just hanging out basking in the sunshine. Of which Los Angeles has plenty of.... a given and consistent truth. 



August 20, 2014

Wednesday, August 20, 2014

Wednesday, August 20, 2014

Tonight's picture was taken in March of 2003. Mattie was 11 months old. We took him to Los Angeles for the first time. Since LA is three hours behind Washington, DC time, this subtle change confused Mattie's sleeping schedule. He was literally up at 4am. Not only up, but raring to go! I was less than thrilled and Peter was a good sport about it. As you can see Peter had a smile on his face! These 4am wake ups happened for a few days until Mattie got used to LA time, and back then I thought this was challenging. But these normal parenting issues paled in comparison to what we later faced when Mattie was diagnosed with cancer. It is unfortunate that we have such comparisons to pull from now. 


Quote of the day: Remember that the most beautiful things in the world are the most useless; peacocks and lilies for instance. ~ John Ruskin


It is ironic that I am posting this photo tonight! Mainly because at 4am this morning I too woke up and in my mind I was ready to start the day. It seemed like it was time to get up to me, except of course it was pitch dark out. So I very much related to exactly how Mattie must have felt in the photo above (totally disoriented to LA time), however, unlike Mattie I was able to go back to sleep! 


My parents and I went out to lunch today and we sat outside in the garden area of a restaurant called, Stanley's. Stanley's has been serving people in the valley since I have been in high school. Needless to say, that is a long time! I remember going to this restaurant with friends of mine, however, at that time, the restaurant had NO garden patio! Check out the beautiful symbols hanging on the wall of the patio?!! Wonderful Mattie suns. They caught my attention today most likely because I was sitting facing them directly! The patio also has a fountain. If Mattie were with us, he would be sticking close to the fountain, playing in the water. Mattie wasn't into eating, as he was into checking out his environment and playing in it. Of course Mattie would be 12 years old now, so I can't even imagine what it would be like going to a restaurant with him as a pre-teen! In my mind Mattie will always be seven years old and a little boy playing with Legos. 

I am signing off for tonight! More tomorrow. I find that I am very tired from writing and from time spent at a computer this summer. I am headed to a museum exhibit tomorrow, so I am sure I will have commentary to report!

August 19, 2014

Tuesday, August 19, 2014

Tuesday, August 19, 2014 -- Mattie died 258 weeks ago today.

Tonight's picture was taken in March of 2003. Mattie was 11 months old and we took him to Los Angeles. I had a conference to attend in Anaheim and we decided to turn it into a family trip to visit my parents. That was Mattie's first airplane trip! I was worried about how he would handle such a long journey. Mattie did not sleep throughout the entire flight. He was FULLY on and playing the whole time. Fortunately I had my bag of tricks with me. With Mattie you could never travel empty handed. I always had to have books, puzzles, games, legos, and lots of things to keep his mind busy! Without that there was going to be trouble for us and everyone else around us. Unlike me, Mattie did not mind motion at all, but seemed to like adventure and the stimulation of new surroundings and places.... just like Peter. 


Quote of the day: Every person needs to take one day away.  A day in which one consciously separates the past from the future.  Jobs, family, employers, and friends can exist one day without any one of us, and if our egos permit us to confess, they could exist eternally in our absence.  Each person deserves a day away in which no problems are confronted, no solutions searched for.  Each of us needs to withdraw from the cares which will not withdraw from us. ~ Maya Angelou



I woke up this morning before the sun came up in order to get ready and pack up for my flight to Los Angeles. Before I left our home, Peter told me to come outside to our deck. To my surprise the White Ginger Butterfly Lily had opened up even more than yesterday and with its unfurling also came that intoxicating fragrance that was promised us!!!! When we bought this plant at the Elizabethan Gardens in the Outer Banks, I remember the ground's keeper telling me that the fragrance of this plant was unforgettable. He wasn't kidding. It is a mixture of jasmine and honeysuckle. It is intoxicating and you wish you could just bottle it up! I can imagine a whole field full of these flowers! No wonder he was encouraging me to buy one. This is the same man that lost his grandmother, and then turned to flowers to cope and manage this great loss. A man I can relate to! I am so happy I did not miss out on this special moment this morning. Of course when I saw this flower it was in the dark! Later in the day, Peter sent me this photo so I could actual see what the flower really looked like when the sun came up!!!


My flight to Los Angeles was over five hours long. Typically I do not sleep a second on a plane, but I am so exhausted, I would say I slept more than I was awake on this flight! A true first for me! Sitting across the aisle from me was a mom and her two children. She had a boy and a girl. Both preschool aged! I hate to say it, but typical gender stereotypes were playing out there..... the girl was sitting still and the boy was a total live wire. People next to me were staring at the mom and the little boy. I of course, did not bat an eye lash, because I knew exactly what she was balancing on that end of the aisle. The only difference between that mom and I was, as soon as the plane took off, her children slept for several hours! I couldn't get over what I was seeing! Totally out!!! Blankets, stuffed animals, and napping! A foreign concept to me!!!


When I got to LA, I met up with my parents at the airport. We had a full day together and even got in close to a 3 mile walk. Given that I have had a rather sedentary summer, walking feels good. At my parent's house, I was greeted by a Lizard who was literally staring at me when I opened the window! Signing off for today.

August 18, 2014

Monday, August 18, 2014

Monday, August 18, 2014

This photo was taken on September 1 of 2009. Only seven days before Mattie died. You most likely can tell that Mattie looks like he was in a lot of pain. He was attached to his black pain pump and though absolutely miserable, Jenny (his art therapist) tried to distract him the best she could by bringing in this battery powered dinosaur. Which did engage Mattie for a little while. By this point in time Mattie had already endured the impossible and was in tremendous pain. Recently I compiled two Power Point slides together that I now display at conference presentations. The first slide shows the psychosocial consequences of childhood cancer. On this slide I show visuals with photos of Mattie that clearly illustrate pain, anxiety, depression, isolation, and fear. On the second slide, I illustrate the difference that psychosocial support services can make in a child's life. This slide shows Mattie happier, doing more child like activities, even though in the hospital and undergoing treatment. The point of the second slide is that despite undergoing treatment, with support and addressing psychosocial issues, aspects of the "real" child can emerge. These slides are quite power displays for our attendees and have a way of conveying messages quickly!


Quote of the day: Certain things catch your eye, but pursue only those that capture the heart. ~ Ancient Indian Proverb

As is typical for this time of year, I travel to Los Angeles in August to visit my parents. So tomorrow I will be writing the blog from the West Coast. 

You maybe asking yourself what have I photographed here? Well this is our White Ginger Butterfly Lily! We purchased this plant at the Elizabethan Gardens in the Outer Banks in June. When we bought the plant it was small. It has been growing all summer. It is now about five feet tall and with a flower that is really starting to bloom. There was NO flower at all when we bought it but we were promised that it would produce a flower and that when it opens up the fragrance would be glorious. I clearly am going to miss this unveiling, but I am so happy I got to see the flower unfurl. Peter promises to keep me posted on its changes, since I have helped to cultivate the plant all summer long! Now this is what the flower looked like on Sunday!


But this is what the flower looked like this morning.... on Monday!!!! Pretty incredible, no? This is ONE DAY's worth of growth!!!! To me this is one remarkable plant and the fact that it is a perennial is wonderful, we shall see if it will actually make it through the winter. If we have a winter like 2014, and it makes it, then I would say this is one hardy bulb!

It has been a pleasure not writing a chapter or having to proof it today! I have been doing this for the past three months. It has become part of my daily routine like brushing my teeth! So it has been a bit strange and foreign not to have to turn to this today but it is a break which is now long overdue.