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

October 18, 2013

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!  

October 17, 2013

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.

October 16, 2013

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 12th-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.  
 

October 14, 2013

Monday, October 14, 2013

Monday, October 14, 2013

Tonight's picture was taken in October of 2008. Mattie was three months into treatment at that point and he went to visit his good buddy, Campbell. As you can see they were enjoying Halloween cookies together. Though Mattie wasn't a sweets fan per se, he did like frosted vanilla based cookies, so I know this ghost cookie had to be a hit with him. It was moments like this when Mattie could get together with friends (certainly prior to his surgeries) and feel like he was living a normal life. But this feeling was always very short lived given the nature of his battle.


Quote of the day: I only share when I have no unmet needs that I'm trying to fill. I firmly believe that being vulnerable with a larger audience is only a good idea if the healing is tied to the sharing, not to the expectations I might have for the response I get. ~ Brene Brown


I had a full day of travel today. Thankfully with Dramamine on board, I was able to manage the five and a half hour flight to Los Angeles. The trip was bumpy but somehow I was so exhausted that I rested periodically throughout the journey. A rarity for me, because I never sleep on a plane.

When I boarded the plane, and took my seat it became apparent that I was assigned to sit in the same row with a mom and her two small children. Both under the age of 5. The mom was commenting to the people behind her that she was ON FULL DUTY with her children throughout the flight and therefore wouldn't be able to enjoy it the same way as those behind her. I overheard that comment and it stuck with me. Given her complaining, I figured I was in store for quite a flight with two active preschoolers next to me. However, I have to tell you, her two combined did not even come close to the level of Mattie's energy on a plane. Each of these children had their own iPad and I am serious, for five + hours they were plugged in. They did not make a peep, except once to go to the bathroom. Mind that was her son, her daughter never moved from her seat!  

Throughout the flight, the mom was also plugged into her iPad. So that was three iPads all in a row. The mom watched movies, ate, and read. In all reality I was in absolute amazement! This was NOT what traveling with Mattie looked like at all. First of all, Mattie could never be plugged into anything for more than an hour. Mattie wanted to do things, build things, and he most definitely wanted human interaction. I could never go on a plane without a bag of tricks, filled with puzzles, legos, hot wheels, coloring books, books, and the list went on! Needless to say by the time a flight to LA was completed with Mattie, so were my entire bag of tricks. I NEVER watched a movie on the plane, read a book or magazine, or had a meal in peace and neither did Peter! After I saw how this mom's flight was, I laughed inside because it made me reflect on our flying experiences with Mattie.

In many ways, Mattie was a better traveler than me. He loved adventure, the feelings of motion related to turbulence, and he just loved new experiences. While staring at this little boy next to me today, I couldn't help but reflect on Mattie. After all, back then at that age, Mattie also was the picture of health. It seems downright impossible to believe and accept that Mattie is no longer alive and part of our world. How do you nurture and help an infant grow to age seven, and then find he is taken away from you by a disease out of your control? It is a loss that always plays mind games with your mind, heart, and soul.

I brought several books with me on this trip. One book I started reading a while ago and then never finished it. It was a book given to me by my niece. In any case, in the book's plot the main character's cat dies. This young girl is very attached to her cat, in fact she feels the cat embodies the soul and spirit of her deceased grandfather. In any case, the book highlights grief and how this girl handles her dear furry friend's death. She is devastated and many around her tell her they are sorry, but it was just a cat. That she will get over it and get another pet! Needless to say, I completely related to what was happening to this girl, especially since we recently lost Patches, our dear calico cat of 17 years. Cats and people are NOT replaceable. I wish our society simply accepted this fact, but I realize it is much easier of course to not address the emotions and to move on and substitute one thing for another. 

I am safely in Los Angeles and have reconnected with my parents. It is mind boggling that one coast can be rainy, gloomy, and cold and the other sunny and glorious. It was 85 degrees today in LA and the sun was shining. I frankly wanted to take a photo of the sun, since we haven't seen in DC for a week! Things are green here, birds are singing, and it really is a different world here in the Fall.

October 13, 2013

Sunday, October 13, 2013

Sunday, October 13, 2013


Tonight's picture was taken in October of 2007. We took Mattie to Cox Farms that weekend for a Fall Festival. To me Mattie made the cutest pumpkin. Orange was just a great color for him. Recently I went out to dinner at two different restaurants in our local area. What caught me by surprise was the pumpkins. Naturally I know we are in October and the Foundation is even hosting its third annual post-Halloween candy drive. Yet there is one thing to rationally know it is October and a whole other thing to see pumpkins, decorations, and accept the feelings these items evoke. Mattie loved pumpkins. One was never enough for him. He loved to collect all types in the Fall, big and small. The last pumpkin we bought was in 2007, when Mattie was well. We haven't bought a pumpkin since. Somehow seeing pumpkins out on display caught my attention this week. I think they are beautiful, but they are no longer a part of our home.


Quote of the day: Despair is the price one pays for self-awareness. Look deeply into life, and you'll always find despair. ~ Irvin D. Yalom


It is hard to believe that Washington, DC has been covered in clouds, rain (at times torrential), and greyness for a week now. Today was NO different. It doesn't inspire me at all to want to do anything outside. I worked around our home today, packed for my trip to Los Angeles tomorrow, and I have made sure that things are in place Foundation wise so that I could leave town. I have been working on closing out projects and other administrative tasks for about two weeks now in preparation for my trip. I am signing off for today and hopefully the next posting you read will be from the West Coast.