A Remembrance Video of Mattie

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to me that you take the time to write and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful and help support me through very challenging times. I am 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 have stopped writing on September 9, 2010. However, like my journey with grief there is so much that 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 me, and most importantly thank you for keeping Mattie's memory alive.


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



January 10, 2014

Friday, January 10, 2014

Friday, January 10, 2014

Tonight's picture was taken in January of 2003. This has to be one of my favorite photos we captured of Mattie. You can see Mattie was staring at something or someone! The person in question would be me. Mattie always seemed to find me no matter where I was in our home. It was like he was part homing pigeon! Peter joked with me often about photographs of Mattie. According to Peter, Mattie had a different look and smile on his face if I was in Mattie's eye shot. I am not sure that is exactly true, but I do know hearing this always made me smile. 


Quote of the day: In the end there doesn't have to be anyone who understands you. There just has to be someone who wants to. ~ Robert Brault

When I was in Los Angeles recently, I received an email that a reminder date was placed on my Blackberry calendar. Naturally not having sent myself the email, I clicked on it to read what the issue was. Low and behold, what did the message say?????????????? Upgrade to an i-phone and then have lunch! No this wasn't some sort of come on from the Apple store. The message was sent by Peter. It was a subtle reminder that I need to get with the 21st century. Needless to say while in California, Peter would do a countdown for me of days until getting an i-phone. 

I am sure to the average person my hesitation about getting an i-phone seems ridiculous. After all, I am sure those of you with one already know that you can do SO much more than I can with a Blackberry. But the Blackberry for me has symbolized more than just a technological gadget. It was my life line when Mattie was battling cancer and then became my virtual support group the first year after Mattie's death. My Blackberry has been with me through all the highs and lows of Mattie's battle and honestly it was in the hospital that I learned to carry the phone with me EVERYWHERE! It even was right next to me while sleeping. Mattie's journey with cancer was surreal and those around me shared in this surreal experience. Some people in our care team would email me at ALL hours of the day and night. In many ways when dealing with life and death circumstances, normality disappears and I know I wasn't oriented to time, days, and most happenings around me back then. I became totally engrossed in beeps, buzzes, the rhythm of an intensive care unit, and of course every sound, moan, and action of Mattie's. When Mattie was alive people wanted to connect with me, they wanted updates on how he was doing, and basically some lived the frenetic pace with me. 

This summer, I confided in one of our crucial members of team Mattie that it was a very hard adjustment after Mattie died to go from being on the forefront of everyone's mind (with many many text messages and emails), to slowly becoming a faded memory. The fading definitely happened during our second year of grieving. It wasn't subtle either, it was a profound disconnect. Loss is a funny thing, others may witness it and may even experience it through you, but only you have the actual wounds and scars. As such, time plays different roles for the observer versus the one who was actually in the train wreck (ie, losing a child to cancer). I suppose as I transition to an i-phone it symbolizes many things to me. It isn't just simply migrating from one phone to another! Instead, it signifies the actual big change in our lives, in which I no longer live in a hospital and in crisis, caring for a seven year old boy. It also is a tangible reminder that our care team is not the same as it once was and the nature of how I use a phone now is strikingly different. 

The day Mattie was diagnosed with cancer, July 23, 2008, was the day that our world became one domino effect of loss. One loss leads to another and another. Some may think that our loss began on the day Mattie died, because that isn't true. It began on diagnosis day when we had to grieve the loss of a healthy child, then the loss of a child with functioning limbs, the loss of not living a normal life, the loss of freedom that comes from living in a hospital, the loss of friends, the loss of an identity, and the list of losses just continues to grow. Saying goodbye to my Blackberry is in essence another loss for me, because this phone has served as a reminder of our hospital battle and a time in which we were a family of three not two. 

January 9, 2014

Thursday, January 9, 2014

Thursday, January 9, 2014

Tonight's picture was taken in January of 2003. Mattie was sitting in "tot wheels!" Which had to be his all time favorite toy when he was a toddler. Years ago such a device was referred to as a walker. When Mattie was born (and there probably still is) there was great controversy about the use of walkers. From dangers about falling to the delay of independent walking. All I know was tot wheels was our saving grace. Mattie zoomed around our first floor and outside in our commons area on this thing. He loved the independence, the freedom, and the control that moving on his own gave him. Typically when in tot wheels, there were big smiles like you see here!


Quote of the day: Let me tell you this: if you meet a loner, no matter what they tell you, it's not because they enjoy solitude. It's because they have tried to blend into the world before, and people continue to disappoint them. ~ Jodi Picoult



Today I had the opportunity to meet a friend for lunch. We chatted about a bunch of different things and her creative idea to present at the Foundation Walk in May. Over lunch she asked how I was doing. That of course is a loaded question and depending upon who I am with, the answer may differ. I am always candid, but I just may not elaborate on my feelings or our situation in great detail. The irony is my lunch mate and I share a couple of mutual friends, yet she wasn't aware of how I knew her friends. That to me was surprising, I guess because most of the people I interact with socially know quite a bit about Team Mattie, who coordinated it, and many of the players of our Team. So in a way it always catches me off guard when I meet someone who is a bit more removed from our journey. Yet being removed enables me to talk about the journey because if I don't talk about it, the person I am with will not understand the situation or grasp the beauty of Mattie's life. Which is not an option in my book. 

For me, surrounding myself with people who shared Mattie's battle was and still is key. Or at least it is key in how I manage and cope with grief. This has been a vital factor right from day one when Mattie died. I would have to say the first year after Mattie died, NO ONE NEW came into my life AT ALL. I was insulated from the outside world and I guess this desire was what made it impossible for me to go to a support group. My support group had to be people who lived Mattie's cancer battle with me. I did not want to share my story with strangers even strangers who may have had more commonalities with me than my actual friends. Mattie's battle with osteosarcoma was so egregious that unless you saw his battle wounds and felt his anxiety and depression with me, you couldn't be part of my inner circle. An inner circle which was needed to help me re-engage in the living world in a safe manner. 

Everyone's grief journey is different, people need different things, and what works for me, may not work for the next parent. But I can safely say that insulating myself had its mixed blessings. Because once a year of grieving was over, things in my world changed. Change is hard for any one of us under the best of circumstances, but under the worst of circumstances change is viewed with fear, anxiety, confusion, and even abandonment. We all want to help others in pain and grieving, but I think we have to seriously consider what happens when we stop providing the same type of support for years to come. For many of us, we think providing help the first year is enough and the grieving parent will then be able to manage moving forward. VERY INCORRECT! If one gets nothing else from the blog, please remember that grieving for a child lasts a lifetime! I know that it may feel that the intensive grieving stage is over after a year, but in my perspective this is just when real grief work begins. Therefore, my one piece of sage advice when helping a loved one grieve is to talk about what that person needs moving forward, making assumptions or putting one's own value judgment on the situation ultimately does more harm than good. 

Any case, in response to my friend's question at lunch, I said that I am living, and yet there are days in which I don't feel a part of the living world. Now she could have acted surprised or perplexed, but instead she went on to explain how she feels that many people around me share this feeling. Certainly not for the same reasons, but nonetheless the outcome is the same. This dialogue took me right back to a lecture I once heard in graduate school. Within the lecture was a story about Mother Theresa's visit to a crowd in Baltimore. Her pronouncement had to do with loneliness and the fact that she was visiting a very large urban city where people are surrounded by others, and yet what she observed was very sad, isolated, and abandoned people. That story always remained with me because I think the crux of many mental health issues involve loneliness. 

Loneliness in my opinion impacts how we feel about ourselves, the world around us, and can be such a negative spiral because loneliness breeds more loneliness and issues. I am always saddened to hear when people feel misunderstood, not appreciated, and disconnected from friends and family. In many cases the reasons for these things vary, but at the core of what I was talking about today was loneliness that transpires because of a tragedy and unexpected occurrence like the death of Mattie. Certainly we all know what loneliness feels like, but I do think the cause of the loneliness and the feelings associated with that cause must always be assessed and understood. 

January 8, 2014

Wednesday, January 8, 2014

Wednesday, January 8, 2014

Tonight's picture was taken in January of 2003. Mattie was eight months old and as you can see he was sitting in his entertainment saucer. I remember when Mattie was three months old, one of my college roommates mailed me this huge saucer as a baby gift. At first I thought......... WOW where is this going to fit??!!! But as any parent with a small child knows, you embrace anything that helps engage your child and captures his/her attention. Ironic isn't it that babies and toddlers are small and yet all their equipment is enormous and takes up so much space?! Any case at four months old we tried to put Mattie in this saucer seat. Mattie HATED it and began kicking, screaming, and crying! However, over time, and after many attempts, Mattie came to love this seat. It gave him freedom to move his legs, twirl around, and be in control. Which was key..... Mattie liked independence and control right from the beginning. 


Quote of the day: The first duty of love is to listen. ~ Paul Tillich


My friend sent me this quote this morning and as soon as I read it, it resonated with me. So many issues between friends and loved ones arise because NO ONE is LISTENING. After all listening is hard work. Of course listening may not happen for multiple reasons. One, we think we know better and therefore we stop listening. Two, we don't have the time to listen, and third, there is NOTHING to listen to because the person in question has shut down and is not talking. Several problems were presented to me today from various people I interacted with, and in every situation things got out of hand because listening and honest communication did not happen. As I expressed to one individual today, covering up information helps no one in the end, and especially when visiting a mental health provider, not providing the facts is not only harmful but it isn't therapeutic. It is true that I do not perform one-on-one therapy anymore and how I use my degree and training differs now, but at the heart of all human interactions is a bond and connection. Such connections are the cornerstone of any effective therapeutic relationship. I believe having therapeutic skills enables me to interact with just about anyone and this also gives me insights into their behavior and actions. Which may be why simple interactions for me, tend not to be so simple. 

This morning Peter text messaged and shared with me some unsettling news. Peter is usually the first person to enter his office suite in the morning. Today, when Peter got into the office, he wasn't alone. He startled an intruder who was trying to steal computers. The thief saw Peter and started running! They saw each other and Peter's presence stopped the thief before he walked away with more than just an old laptop. The scary part of all of this is this man could have been armed. Fortunately he wasn't since this could have been a very different scenario. Peter worked with the police and went through video surveillance footage to identify the criminal. Clearly there is never a dull moment and you just never know what the day is going to bring. Any one ever diagnosed with cancer, knows the profound effect that one minute can make. It is the difference between life without cancer and life with cancer. 

I finally ventured outside today and walked maybe three miles in this horribly frigid weather. It certainly would be easier to be sedentary, but I find that doesn't do wonders for my mood. In the midst of everything else today, the Foundation has received an invitation to speak at both a university and a national conference. In fact the national conference has asked us to be the keynote speaker. Now there is a daunting task. I have to find out more about this, but what this is telling me is that our Foundation's mission and platform is causing some attention, and a national psychosocial standard of care is not only our dream, but it is a necessary reality. 

January 7, 2014

Tuesday, January 7, 2013

Tuesday, January 7, 2013 -- Mattie died 225 weeks ago today.

Tonight's picture was taken in January of 2003. Mattie was nine months old and full of energy and life. Mattie was an incredible force, but that was apparent from the minute he was born. He kept all of us on our toes! Tuesdays will always remind me of the day Mattie died. Today marks week 225, which seems like forever and a day. Yet for me this is only a number, a number which really has no bearing on how significant a loss this is for Peter and me. 


Quote of the day: Take the first step in faith. You don't have to see the whole staircase, just take the first step. ~ Martin Luther King, Jr.


I was told by several friends and Peter that it was FRIGID in DC today! I have no idea, since I never left our home. Whether I got out or not isn't noteworthy, but I think the fact that many local school districts closed school today is! Maybe because I grew up in NY and also went to college in upstate NY, the notion of closing school for cold temperatures is an absolute riot! Have our bodies evolved differently in the last several decades? So much so that we can't tolerate the cold??!!! Or better yet, are our north east counterparts just hardier than us mid-Atlantic folks? After all New York and New England states do not close school for cold weather! I continue to be perplexed by the DC area and how it handles storms (storms mind you that produce an inch of snow) and now cold weather of all things. 

Last night when I got off the plane, I could feel the cold air immediately and it was like being attacked by a knife. Therefore, thankfully with my position with the Foundation, I can work where ever I am, so today I elected to stay home and was glued to the computer. I worked for nine hours straight processing all our annual fund donations. Though that was a great deal of time, it is a wonderful problem to have, it means that our supporters have once again enabled us to have a successful campaign. We are deeply grateful.  


Before I left for Los Angeles, I picked out paint colors for one of our bathrooms and our bedroom. Our faithful readers know that I spent the Fall transforming Mattie's room. It was intense work, with over 60 garbage bags full of donations to Goodwill. I think addressing Mattie's room, inspired us to continue working. But painting is hard work! I learned this from painting our first floor and Mattie's room with Peter. While I was away, Peter took on the painting without me and it was a great gift to come back and see two rooms transformed by color. Pictured here is the bathroom I used to share with Mattie. Now it is a very pleasant sunshine lemon color and the butterfly theme is being carried over here from Mattie's room. 

The second room Peter transformed is our bedroom. Like Mattie's room, this room had never been painted since we moved in years and years ago. Painting was long overdue, but Mattie kept us busy and I did not want paint fumes in our home with his young lungs. Our bedroom gets a great deal of sunlight and therefore a deep color works quite well. Keep in mind that prior to our painting, all our walls were ivory colored. But with Mattie gone, Peter and I need more color to help change our mood. I love all things Victorian, so I am in the process of giving our bedroom such a look. I love this dusty rose color and I am thrilled to see clean walls and watch the color change with different times of the day. 

January 6, 2014

Monday, January 6, 2014

Monday, January 6, 2014

Tonight's picture was taken in December of 2006. As you can see Mattie was wearing one of his favorite movie character's on his shirt. Lightning McQueen was the rage that year in our home!!! We had Lightning McQueen cars, clothes, slippers, an umbrella, and flashlight. You name it, we most likely had it! Now exactly what Mattie was doing here was besides me. He got it in his head that he wanted to put on Peter's pants. So the photo captured how well that worked out!!!






Quote of the day: How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and strong. Because someday in your life you will have been all of these. ~ George Washington Carver


As I write tonight's blog, I am happy to report that I am safely back in Washington, DC. The weather in Los Angeles today was 80 degrees, quite different from the shocking 12 degrees which greeted me upon landing at Dulles Airport. As my faithful readers know, I dislike flying!! That is actually putting it mildly, I do it because otherwise my life would be limited geographically, but I have to psych myself out to go on a plane. With winter storms all last week, flights today were over booked, crowded, and all of this makes people TENSE! By the time I got on the plane, I found an older man in my seat. When I told him it was my seat, he proceeded to tell me that he wanted my seat so he could sit next to his wife. The only drawback was his seat was in another row, and was a middle seat. I tried to tell him that I booked an aisle seat for a reason, but I wasn't getting too far with him. He walked with a cane and I had observed him in the airport. He was antsy and couldn't sit still when off the plane, so I imagined on the plane wasn't going to be any better. So given his age, I wasn't going to argue with him and did him a favor. So I sat in the middle. I place I really do not care to be. The middle makes me feel trapped and confined. My luck though was that I was sitting between two men who kept to themselves and were pleasant seatmates. Thankfully despite winds in DC, we had a smooth and safe flight.

I want to send out a HUGE THANK YOU to the anonymous person who sent me the clip of Mattie below with his wonderful nurse, Katie. Here is the video clip I wrote about last night...... Katie and Mattie performing an impromptu version of the Three Little Pigs. To me this video is priceless and precious and I have now saved it in my files. I so appreciate you reading the blog and sending this electronic gift my way. You made my day!!!!

THE THREE LITTLE PIGS!!!! http://www.youtube.com/watch?v=BUYwM972jD8

January 5, 2014

Sunday, January 5, 2014

Sunday, January 5, 2014

Tonight's picture was taken in December of 2006. To me there was something very sweet and cute about Mattie's expression. It could be that the hats give this photo a fun dimension, but most likely what captures me was Mattie's face. He was really giving Peter a tight hug around his neck, which you may not be able assess, but as I look at Mattie's left arm and how he was bracing his face, it all becomes clearer to me. There was a lot of Daddy love that I captured in front of the tree that year.


Quote of the day: Courage is like a muscle. We strengthen it with use. ~ Ruth Gordon


This morning I was showing my dad several things on YouTube. Because I know we have a couple of videos of Mattie on-line, I tried to search for one in particular. Back in April of 2009, Peter captured an adorable video of Mattie with his nurse, Katie. Mattie and Katie were acting out the Three Little Pigs right on Mattie's PICU bed. It was an impromptu performance, but absolutely priceless. I LOVED that video! 

While searching for the Three Little Pigs, I found a Channel 9 story that was covered of Mattie from Mother's Day of 2009. I watched it with my dad and there was something very unsettling about seeing Mattie live on screen. Some how video is far more tangible than photos. Photos which I see everyday. For those of you who wish to see the Mother's Day video, you can click on the link below. You can see Mattie interacting with the TV interviewer and showing her his latest creation he built, you can also see some of the chaos and piles we were dealing with all around us. The YouTube Video:
http://www.youtube.com/watch?v=650k115rFo4

However what truly bothered me is that I couldn't locate the Three Little Pigs video on YouTube. I searched every where and then did a Google search. It is as if the video never existed. Needless to say that upset me because from my perspective it was the cutest video! This missing video also reminded me of a precious audio clip that was captured on a computer Mattie's school lent him while he had cancer. One evening while we were home from the hospital (which was rare), Mattie was sitting on his bed, waiting for me to get washed up for bed and come into his room. When Mattie developed cancer, Peter and I took turns (when home) sleeping in Mattie's room. Since Peter had to work full time, I covered many of the nights. Mattie was hooked up to all sorts of IVs, and therefore he could not be left unattended at night. Also because of all the IVs, Mattie had to frequently go to the bathroom at night. Due to his surgeries, he was unable to accomplish this task alone. He needed someone to lift him out of bed, help him with his clothes, and stand him upright. Any case, back to my story. While Mattie was waiting for me, he was creating some sort of visual electronic piece of art for me on his School's computer. However, while drawing, he was singing a song about me. A song he created entitled, Una Moon. Which was Mattie's nickname for me. Any case, I can still picture Mattie singing Una Moon to me, yet to this day, I do not have the audio clip of it. After Mattie died, I gave the computer back to his School, and never thought to download the song. 

Seeing the video of Mattie today evoked several feelings for me, and no matter how deeply I try to remember, at times I forget what Mattie's actual voice sounded like. Which is why today's video was so special to me. If I could only track down the Three Little Pigs and Una Moon!  

This afternoon, my parents and I went out to lunch. It was close to 80 degrees and we had lunch outside. On Monday, I fly back to DC, and I am preparing myself for the grayness and freezing weather awaiting me. All I can say is sun and warm weather in December and January is the way to go. Life is hard enough, you might as well have sun and warmth while living it. 

Saturday, January 4, 2014

Saturday, January 4, 2014

Tonight's picture was taken in December of 2006. We took Mattie to the grounds of the US Capitol and walked around to look at all the holiday decorations. We paused in front of this tree for a photo. Not a cloud was in the sky and it was a crystal clear day. Like every parent, we thought we would have many more holidays together. We weren't as fortunate however which is why I am glad we tried to make the most  of our time together. We were active with Mattie and while being active, I made a point to try to snap photos of these moments. Thinking that Mattie would want to see them in the future, never realizing that it would be ME who would actually need them!  


Quote of the day: Being vulnerable doesn't have to be threatening. Just have the courage to be sincere, open and honest. This opens the door to deeper communication all around. It creates self-empowerment and the kind of connections with others we all want in life. Speaking from the heart frees us from the secrets that burden us. These secrets are what make us sick or fearful. Speaking truth helps you get clarity on your real heart directives. ~ Sara Paddison

Just like we paid our first visit to the California ScienCenter this week, today we made our inaugural visit to the Gene Autry Museum. I have heard about this museum for years and when we took Mattie to the Los Angeles Zoo, we would pass it on the way. Learning about the history of California, the Gold Rush, the trans-intercontinental railroad, and the diversity of all the people involved in the State's development is fascinating. The Autry Museum does a wonderful job at transporting you back in time. It isn't like any other museum I have visited, mainly because in each room, there is a theme and each item on display builds off of the next item right near it, forming a complete story and picture. I went to high school in California, yet I have to admit this is not a part of history I feel like I ever learned. Somehow the Museum brought the American West alive for me and made it much more tangible and understandable. 

When you enter the Museum, you are struck by wall sized murals, created by the Walt Disney Studios. These murals depict the various time periods in California's illustrious development. 

The Autry National Center of the American West was co-founded by legendary recording and movie star Gene Autry and his wife Jackie, along with country singer and actor Monte Hale and his wife Joanne. The opening of the Autry in 1988 realized Gene Autry’s dream to build a museum to exhibit and interpret the heritage of the West and show how it has influenced the United States and the world. Autry’s career spanned some sixty years in the entertainment industry, and he was also a broadcast executive and Major League Baseball owner. But Autry’s idea of the West was more than just about entertainment. He saw it as a melting pot of American history where many cultures met, competed, and influenced each other, helping to shape the country’s vision of itself then and now.


This maybe one of the most remarkable pieces on display. It is hard to choose a favorite, but this would be mine. This stagecoach was manufactured by Abbott and Downing Company with ironwork by James G. Chesley, in the 1850s. This stagecoach is probably the only known surviving coach from the California Stage Company, the Far West’s earliest major stage line. Founded in 1854, the California Stage Company quickly took over the majority of routes within California, eventually extending northward to Portland and eastward to Nevada’s Comstock lode. It was operated by veteran stage men James Birch and Frank Stevens. Rounded body suspended above undercarriage, or gears, by leather throughbraces. Two leather straps between body and gears check lateral movement. Basically there were NO springs and the movement was more like the gentle movement of a cradle. The gears and wheels were intended for hard service over long distances. Believe it or not there were three rows of seats inside, capable of holding up to nine people with additional seats mounted upon the roof extending passenger capacity to eighteen. This stagecoach is probably the oldest surviving Concord coach to have seen service in the West.

We took a two and a half hour guided tour today. The docent was incredible. A former chemistry teacher, who taught himself California history. He clearly loves his job and it showed as he brought each of the museum rooms to life for us. The Community Gallery interpreted the West through the lens of the racial, ethnic, and religious communities important to Western development between 1885 and 1895. Using 1890 census data, the gallery compared and contrasted family and daily life, education, religious beliefs, politics, and work among eight different communities. The gallery also included an area illustrating the saloon as the social center of many Western communities. Highlights of the Community Gallery included a nineteenth-century fire engine, an Osage wedding dress, a child’s vaquero outfit, a Chinese immigration certificate, and an ornate mail-order bar. Within the Community Gallery was a section on Law and Order in the nineteenth-century West. Highlights here include Billy the Kid's rifle and items associated with lawman Pat Garrett.

This bar counter and tobacco cabinet were carved mahogany, glass and brass fittings, made by Brunswick Balke-Collender Co., in the Los Angeles style. Formerly installed in the Stockman Bar in Wibaux, Montana, late 1800s. It is an original!!! Notice all the glass bottles on display. As was explained to us, mixologists were very popular in the 1800s. These bartenders could create just about any drink combination possible. Seems to me not much has changed in several centuries. 


Right next to the bar was this Edison Multiphone. Or perhaps we would refer to it as a juke box today. These coin operated amusement devices were popular in saloons at the turn of the century. It offered a choice of 24 cylinder recordings simply by turning a crank. By having patrons pay for their entertainment, saloon keepers saved money on having to hire musicians. 




This is a painting of a Vaquero, a Spanish cowboy. Looks a bit different from how we imagine a cowboy to be, no?!!! I learned today that horses and cattle came from Spain (they are not native at all to North America) and Spanish speaking people brought herding traditions and horsemanship to what would become the home of the American cowboy. Americans entering California and Texas were intrigued with the techniques and style of the Vaqueros and from there the birth of the American cowboy evolved.

The Cowboy Gallery detailed the evolution of the cowboy from the open-range era on the Texas grasslands through the modern ranching period of the late twentieth century. As the most iconic image of the American West, the cowboy represents the fusion of Anglo and Spanish colonial traditions within the region, and the gallery presents different traditions ranging from the Southwestern vaquero to the northern cowboy. In addition, the gallery contrasts the different forums of "cowboying," including the sport of rodeo and the working ranch. 


After our tour, we went to see the special exhibit entitled, Jews in the Los Angeles Mosaic. This special collection explored how a growing Jewish community settled, prospered, and helped shape the economy, politics, and culture of a city—and how the diversity and dynamism of Los Angeles have transformed the local Jewish community for the past 160 years.

This groundbreaking exhibition protrays the story of neighborhoods like Boyle Heights and Fairfax, people like Billy Wilder, Max Factor, and Frank Gehry, and lynchpin industries like the movies and suburban land development. I learned that Jewish people helped change the region by recruiting the Brooklyn Dodgers, inventing the Barbie doll, and joining other Angelenos in electing the city’s first African American mayor. Featured were more than 150 stories, documents, objects, and images of family, community, and society.

I hope you enjoyed my tour through the Gene Autry Museum. It is definitely worth visiting and now that I saw it, I think Mattie would have appreciated aspects of this Museum. Bordering this Museum is the famous Travel Town Museum (http://www.traveltown.org/). This is a spot we took Mattie to every time he visited Los Angeles. It is an outdoor museum with trains on display, trains with a history to tell. Kids gravitate to this museum because you can board every train and run around. Funny how the sights of a place you used to visit brings back all sorts of memories. I did not even go into Travel Town today, I simply passed it. Most parents have memories of their children from when they were little, and parents may look back at these memories and reflect on the precious time that has gone by. For parents who lost a child to cancer, these memories are not the same for us. Our children are no longer alive and therefore we can't take comfort in knowing and seeing that our children are growing and evolving. For me Mattie will always be 7 years old, and in so many ways memories are needed and yet bittersweet all at the same time.   

January 3, 2014

Friday, January 3, 2014

Friday, January 3, 2014

Tonight's picture was taken in December of 2007. One night during the holiday season we took Mattie to see the outdoor lights at Brookside Gardens in Maryland. Unlike other outdoor displays, Brookside's are featured within a garden setting. In addition, you do not view them by car. You park your car and then walk through the gardens. It is a magical experience and my favorite outdoor light event in the area. After our walk through the gardens, we went inside their visitor's center where they were featuring cookies and hot chocolate. Mattie hated chocolate, but he went in to entertain me. While sitting on a bench, I snapped this photo of Mattie with a wonderful garden metal sculpture!


Quote of the day: Blessed are those who can give without remembering and take without forgetting. ~ Elizabeth Bibesco


When I arrived in Los Angeles the week of December 19, I decided to decorate my parent's house for Christmas. I did not do any decorating, not even a light, within my own home in DC. However, since my parents had friends coming over while I was here, I figured decorating would make it nice for others. My parent's neighborhood decorates inside and outside for Christmas and therefore in a way it inspired me to want to join in. I most definitely do not feel this way in DC. DC, in many ways, is so transient that no one around us seems to get in the holiday spirit. What a commentary about our big cities! Since Peter and I have lost a sense of holiday spirit within us, being surrounded by grayness and dullness during this time of year, only breeds further sadness. 

Any case, for two weeks now, I have seen lights each evening and there is something to be said to seeing lights when it is dark so early. It seems to capture my attention and maybe also my mood. This morning I realized that in a few days I will be returning to DC, and therefore would need to start taking Christmas things down and store them for my parents. As any one who decorates knows, disassembling and storing things are much harder to do than the actual decorating. 

This afternoon, we went for lunch at Mattie's favorite restaurant in Los Angeles. Mattie loved this restaurant because of its outdoor space and the fact that it had a fountain. Mattie's favorite table was of course right by the fountain. A boy who was fascinated by water and the movement of water. In fact, I can still picture him eating at this restaurant, of which he usually ordered his own individual pizza. Getting food into Mattie was an art form. Basically you had to encourage him to eat between building a structure or designing something. The ultimate multi-tasker, making meal times anything but boring.

My friends are preparing me for the cold weather shock that will be bestowed upon me when I return to DC on Monday. I can't get over the snow on the East Coast and naturally the storms in the Midwest. It is just hard to fathom California's weather. So far since I have been here I have awoken to sunshine and 70 degree temperatures. EVERYDAY!!! Something I most definitely prefer and do not take for granted. Since I find walking and sunshine very therapeutic and for me they combat grief, the winter months in DC are particularly awful. The freedom to go outside year round has it advantages and to me it is amazing to see green grass, flowers, and trees in bloom. A total night and day to DC's grayness and barren terrain. 

January 2, 2014

Thursday, January 2, 2014

Thursday, January 2, 2014

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

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


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


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

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

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

When the space shuttle, officially called the Space Transportation System (STS), rocketed off the launch pad for the first time in 1981, it became the world’s first reusable spacecraft to carry humans into orbit. Over the thirty-year course of the space shuttle program, the shuttles and their crews assembled parts of the International Space Station, deployed and serviced the Hubble Space Telescope and Chandra X-Ray Observatory, repaired and re-launched satellites, sent probes to Venus and Jupiter, and more.
Five different orbiters flew into space as part of the program—Columbia, Challenger, Discovery, Atlantis, and Endeavour—for a total of 135 missions. Counted together, the space shuttles have carried 355 people, flown over 500 million miles, and spent over 1,300 days in orbit. 
The space shuttle was actually made up of several separate components. What people usually call the “shuttle” is actually the orbiter—the part of the shuttle that held the crew and the cargo, officially called the payloads. The main engines are part of the orbiter. In addition to the orbiter, each shuttle “stack” included two solid rocket boosters and an external tank. All the components were reusable except for the external tank, which by design burned up in the atmosphere over the Pacific Ocean following each launch.

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

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

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


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

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


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


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

January 1, 2014

Wednesday, January 1, 2014

Wednesday, January 1, 2014

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






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


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

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

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

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

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

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

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