Saturday, May 25, 2013

Saturday, May 25, 2013

Tonight's picture was taken in May of 2009. Like so many holidays, Mattie also spent Memorial Day in the Hospital. Friends brought Mattie patriotic items for him to decorate his room with. However, since Mattie grew up in the city, he was very aware of Rolling Thunder and their presence over the Memorial Day weekend. Rolling Thunder’s mission "is to educate, facilitate, and never forget by means of a demonstration by service members who were abandoned after the Vietnam War." Rolling Thunder has also evolved into a display of patriotism and respect for all who defend our country. Literally this demonstration involves thousands of motorcycles that flood the streets of DC. You can't miss seeing it or hearing it for that matter! Mattie took all the flags, streamers, and pin wheels and decided to decorate his wheelchair. He created his own rolling thunder within the PICU.


Quote of the day: There is a saying in Tibetan, 'Tragedy should be utilized as a source of strength.' No matter what sort of difficulties, how painful experience is, if we lose our hope, that's our real disaster. ~ Dalai Lama XIV

Peter and I started our day off by walking on Roosevelt Island. I had done this with my mom on Thursday afternoon and the Island was simply glorious in color. So I suggested to Peter that we get out and walk. As we were walking over the bridge to enter the Island, this was our first sighting..... a Mama Duck with her eight ducklings. A priceless sighting that Mattie would have appreciated!

The Island is simply intoxicating now! It is filled with wild jasmine and the fragrance is wafting everywhere!

Greeting us on our walk was this wonderful Baltimore Oriole, or otherwise known as the Red Winged Blackbird. I love the call of this bird, because it is SO unique and reminds me of a creaking door.

Also on the Island today were beautiful yellow Irises in bloom! It was lovely to see this sea of yellow all around us.

As you most likely saw, at the top of the blog is now posted a timed photo album from this year's Foundation Walk. However, over the course of this next week, I will also be featuring photos in each nightly posting! One of the returning activities we had this year was a Zumba
session. The lady in grey and black is Jenny, my zumba teacher. This is her second year hosting a session at the Walk and this year the participation grew in size! People of ALL ages joined us and I think others simply enjoyed listening to the music and watching us dance. The funny part about this activity is people always come up to me after it is over to tell me that they thought they were in good shape, until they tried zumba. Zumba does require not only some coordination but most definitely stamina.

Coach Joseph (with the red shirt) is the current head Football Coach at Mattie's school. He is a great sport and participated in Zumba again this year with some of his athletes!

Brandon, Mattie's big buddy, was also a good sport and came out and joined his mom, my mom, and the rest of us jumping around!!!

To me this photo is charming! I did not realize that two of Mattie's kindergarten buddies were doing Zumba with us until Jenny told me this in class on Thursday. I was jumping around myself at the Walk so I did not see this for myself. Fortunately Daniel, our photographer, caught this priceless sight. In the front row are Liliana and Tim, both classmates of Mattie's!

On an aside, one of the Foundation's new taglines was featured on the back of our t-shirts this year. If you look closely you may see it! The tag line is, "It's not just about the medicine!" Since our mission is to address the psychosocial issues and needs associated with childhood cancer, I feel that this tagline is short, sweet, and says it all!!!

Peter and I are driving to the beaches of North Carolina tomorrow morning. We will be there for a week. So tomorrow I will be writing from a more peaceful setting. On reflection, I can't help but acknowledge that the last time I was in North Carolina, Mattie was alive and a toddler!
 

Friday, May 24, 2013

Friday, May 24, 2013

Tonight's picture was taken in July of 2002. At three months old, Mattie was baptized at a private ceremony held by Father Jim. I met Jim when I was a graduate student at The George Washington University. In fact, Jim gave me my first client to work with and supervised me. Jim baptized Mattie, but he also presided over Mattie's funeral. Something none of us would have ever expected to happen six years later. Mattie handled his baptism SO well. He had absolutely no problem with water being poured over his head, in fact, Mattie seemed to like it and actually smiled through the process! He was always full of surprises!

Quote of the day: It may be unfair, but what happens in a few days, sometimes even a single day, can change the course of a whole lifetime... ~ Khaled Hosseini

My parents flew back to Los Angeles today. Our day started very early, and traveling is never an easy endeavor these days. My parents are now safely back in LA and it is hard for me to grasp that the Walk is now officially over. When my parents return home, it seems to signal the end of the Foundation event for me. I live and breathe the Walk for MONTHS and when it is over, it is certainly a healthy thing, but it also is emotionally challenging for me.

I am honored to have a new friend, a sixth grader at Holton-Arms school, who faithfully follows the blog. I do not know who she is, but her messages have a way of making me smile. It is funny how happiness can be brought to me in the written word! My young friend said she understood the sentiments I expressed in last night's blog, as it related to the fact that Mattie's friends will all be graduating from fifth grade next week. I of course expressed other emotions last night as it related to graduation, especially the fact that I find no comfort in knowing that as Mattie's friends are graduating they are thinking of him. What I find very intriguing is my new friend says she can understand what I am expressing and even asked me how I was in her message. Typically I do not like the question "how are you?" But her "how are you" I felt was different! She wasn't going through the motions of asking, but instead posed a genuine question and expression of concern. Needless to say, I find this connection with this young person I don't even know, very special, and it makes me happy.

Over the next week, I have the privilege of sharing with you photos that were captured by our photography company, Photozee--- http://www.photozee.com/.  Photozee does probono work for us and we are deeply grateful to Daniel for working so hard at the walk to capture every nuisance. Pictured here is my friend and colleague Nancy and her 9 year old grandson, Ryan. Nancy traveled from New York with Ryan to attend our Walk this year. Ryan participated in one of the kid trots and as you can see he earned a medal for racing!

At the Walk, one of the activities provided is nail art. This is brought to Mattie Miracle by the Molecule Salon in Washington, DC. My friend Nancy had a butterfly pattern created on her nail in honor of Mattie! Nancy was a good sport, as I snapped a photo of her nails!

No Walk would be complete without Linda, Mattie's child life specialist. A portion of our Walk proceeds go to the Mattie Miracle Child Life Program Fund at Georgetown University Hospital. Linda oversees this fund and Peter and I are committed to supporting Linda and her work. I couldn't have survived at the Hospital without Linda. In honor of Mattie, Linda set up a beautiful butterfly glitter project with the kids in attendance. Linda told me that several of Mattie's friends created butterflies that they want us to eventually place on Mattie's memorial tree.

Through Mattie's battle with cancer, Peter and I became close to two very special families. One of these families is Tricia's. As my faithful readers know, Tricia was Mattie's favorite HEM/ONC nurse. Besides being an extremely competent nurse, Tricia is also an outstanding advocate as well as a compassionate and an insightful person. Peter and I fell in love with her and she was really there for us during all hospital crises, and I assure you we had many of them! Each year, starting in 2009 (when Mattie was still alive), Tricia and her children have attended our Walk! Tricia has been coming for five years in a row and her children follow us on Facebook. Pictured from left to right are Kelly, Kyle, Nicole, Tricia, Vicki, and Peter.

The other amazing family we became connected with at Georgetown was the Johnson Family. My faithful readers are very aware of Brandon! Like Tricia's family, Brandon and his parents have attended every Walk and no matter what activities we have going on, they are always there to volunteer, help us, and Brandon is always by my side to help us officially start the Mattie Miracle Walk around the track each year! Pictured from left to right are Vicki, Brandon, Toni, and Jim!

I end tonight's posting with a photo of Brandon's hand! Brandon went to our raffle tent and got a washable tattoo of a roach placed on his hand. There is great significance to this tattoo. Mattie LOVED roaches and anything creepy! Brandon got this symbol in remembrance of his seven year old buddy. A sight I won't forget anytime soon!!!

Thursday, May 23, 2013

Thursday, May 23, 2013

Tonight's picture was taken in May of 2009, at the Mattie March. In the photo with Mattie are Ariel and Tess. Both of these women were students of mine. In fact, Ariel went on to become a pediatric nurse and now works in a well known hospital in NYC. I am very proud of her and the profession she chose. Both Ariel and Tess worked with Mattie at the March to help him create a Mother's Day gift for me. This was the last Mother's Day gift I ever received. Mattie made me a beautiful card and decorated a bag for me. All things I kept and mean a lot to me.


Quote of the day: Life's under no obligation to give us what we expect. ~ Margaret Mitchell


This afternoon my parents and I visited Mattie's favorite restaurant for lunch. When Mattie was in preschool, we used to take Mattie to this restaurant quite often after school. We frequented this restaurant so often that we got to know the manager of the restaurant and eventually Becca, the executive chef (the wonderful person who donates and cooks all our food at each Foundation Walk!). Though Peter and I visit this restaurant quite frequently now on the weekends, the manager we know only works during the week. So in essence we haven't seen him in a LONG time! Today when we walked into the restaurant, we immediately saw Mike. Despite not seeing each other in ages, he knew exactly who we were. We are not the only patrons who have fallen in love with Mike. He is a people person, cares about his diners, and makes you feel special. I recall how special he always made Mattie feel when he was healthy, and I most especially remember how kind he was to Mattie when he was battling cancer and in a wheelchair. He treated Mattie like a "normal" kid, engaged him in conversation, and always gave him a toy to play with. This of course was when Mattie was well enough to go out into public spaces. As Mattie's treatment continued, he became more and more remote so that interacting with people became almost non-existent.

We can not visit Mike's restaurant without thinking of Mattie. We practically sat in almost every booth within the restaurant when Mattie was alive and whenever I pass the pond with the koi outside, I pause. Mattie is no longer alive, but his presence exists for all of us at this restaurant. Seeing Mike today just exacerbated that feeling for me!

As Margaret Mitchell said, "life is under NO obligation to give us what we expect." I never expected to give birth to a baby and then lose him seven years later to cancer. I do not think anyone could have possibly prepared me for this reality! I had the expectation that I would see Mattie go to school, make friends, participate in school events, graduate, have a girlfriend, get married, and the list goes on. None of these expectations will ever be met and frankly it gives me no comfort knowing that as Mattie's classmates graduate from elementary school next week, that Mattie's name will be mentioned, or that his classmates may say a reflection about him during graduation. From my perspective these are all niceties, niceties that will not bring Mattie back, and in many ways the whole notion of graduation incenses me. I freely admit that I can not be mature about this nor can I appreciate that others are graduating, that others are maturing, growing up, and moving onto middle school. For me, I am trapped in kindergarten and most likely that is where my heart and mind will remain.

Wednesday, May 22, 2013

Wednesday, May 22, 2013

Tonight's picture was taken in May of 2009, at the Mattie March. As you can see the Walk was about to begin. I have no idea where I was in relation to this photo. I may have been trying to take a picture of this moment with my own camera, I have no idea. But what I immediately noticed in this photo tonight was who was assisting Mattie. Right by Mattie's side was Linda, Mattie's child life specialist. Though in relation to others surrounding Mattie, Linda knew Mattie for the shortest period of time. Clearly others around Mattie knew him practically for all his life, not just through his cancer battle. But living and battling with cancer has a way of uniting people on a very deep level. The connection doesn't require time, in fact, the bond transcends time. Mattie and Linda had that kind of connection, and as she looked out for him in the hospital, he also naturally gravitated to her outside the hospital as well! Linda was considered to be safe, someone who Mattie felt understood him and looked out for his well being. I may not have deduced all of this when I first looked at this photo, but now years later as I observe it, it speaks volumes to me. Which is why I feel strongly about supporting the quality work that Linda does. Not just child life work in general, but specifically the work that Linda does and oversees.  


Quote of the day: Sometimes our light goes out, but is blown again into instant flame by an encounter with another human being. ~ Albert Schweitzer

As I write tonight's posting, I realize that between yesterday and today, 500 people have logged onto Mattie's blog to check in! I promise Walk photos are coming soon. Our photographer is giving us a disc tomorrow and then it may take me a few days to organize hundreds of photos, but I assure you they are coming, so please stay tuned!

I LOVE Schweitzer's quote. In our day to day life, all of us can get dejected, depressed, and disillusioned from time to time. Different things can trigger these feelings for us. But what I do know is that human interactions and kindness are like oxygen. Such things have a way of reigniting our joy, passion, and faith in life! Naturally with the aid of technology I can tell how many people read the blog each day, but that is very limited data in a way because I do not know who these people are. It can be a daunting proposition to write each day, especially when I do NOT know who my audience is! Most of the time I do not reflect upon who is reading my thoughts and feelings, I just try to write and be genuine. Yet when people post comments on the blog and share their thoughts and feelings with me, I view this as a gift. Reader postings enable me to see that the blog is read by SO many different people, from all over the Country, and recently I also learned that even several young people are following along. I must say I wasn't aware of this.

To the Holton-Arms sixth grader who wrote to me last night..... A BIG THANK YOU! Apparently this young lady starts her day off by reading Mattie's blog. I reflect upon my life when I was 12 years old, YES I can remember that far back, and I know that I definitely did not have the maturity or maybe even the sensitivity to want to read about someone else's life and heartache on a daily basis. This skill and desire grew within me over time and most likely is why I gravitated to the mental health profession in graduate school. But as a pre-teen, I can safely say I did not even know what cancer was, much less that a child could get such a horrible disease.

Knowing that Mattie's life and our story has intrigued this sixth grader has in a way caused my inner flickering light (this happens to me every year right after a Walk) to be "blown again into an instant flame." The Walk takes every ounce of energy out of me, it is a physically and emotionally challenging event to plan and execute, and it takes me weeks to close out paperwork and complete administrative tasks associated with running such a fundraiser. I certainly can feel good about its success, but it is hard to plan an event in which the participants are healthy children and their families. It is a constant reminder of what is missing in our lives and at the end of the event, hopefully people leave having had a good time, and yet I leave feeling empty again. I walk a fine line between being Mattie's mom and being the president of Mattie Miracle. In fact, one of the psycho-oncologists who works closely with the Foundation on developing a national standard of care, said to me last week that one of the things he most admires about me is the fact that I can be a grieving parent and yet educate, advocate and run a Foundation that will ultimately benefit all children with cancer. He told me this trait is VERY rare from his experience and perspective. From his experience most grieving parent can't move past their own loss! I totally get that and I certainly know why what we are doing is rare. It is rare because it is very very hard to do. When you lose a child to cancer, it clouds everything about living, breathing, how you view others, how you view yourself, and how you view the future.

In the midst of all the emotions I experience post-walk, I have to say that reading this posting from our faithful sixth grade reader made me pause! It has made me pause because if I can influence and inspire the hearts and minds of the next generation about childhood cancer, then perhaps this is my destiny and legacy. A legacy that Mattie and I created together.

Tuesday, May 21, 2013

Tuesday, May 21, 2013 -- Mattie died 193 weeks ago today.

Tonight's picture was taken in May of 2009, right before we headed to the Mattie March. The March was the first Walk our Team Mattie community planned for us to show unity and support. It was an amazing event and I am so glad Mattie got the chance to feel this kind of spirit.


Quote of the day: Everything you can imagine is real. ~ Pablo Picasso


Today I took my parents to the Hillwood Estate, Museum, and Gardens in Washington, DC. To me, visiting Hillwood is a must see when coming to DC. Especially if you are intrigued by seeing "living art." Meaning art in a more natural surrounding rather than stuck behind a cabinet in a museum!

In 1955, Marjorie Merriweather Post purchased Hillwood and literally transformed the estate which was originally built in the 1920s into a 25 acre masterpiece which included a mansion that was filled with bold 18th century French decorating styles from Louis XVI and breathtaking gardens. Marjorie was an only child and her father was CW Post, the founder of the Post Cereal empire. At age 27, after Marjorie lost both of her parents, she literally inherited a $20 million cereal company. Marjorie was considered one of the wealthiest women in the United States at one time, had was married four different times. After her fourth divorce she moved into Hillwood. Her second husband was EF Hutton, and together they transformed the Post Cereal Company into General Foods. In fact, we were told that Marjorie was deeply in love with EF Hutton, and that he was the second love of her life, after her father. Apparently EF Hutton was unfaithful to her, she couldn't tolerate that in a marriage, and divorced him.

Walking through Hillwood gives you an appreciation for the kind of woman Marjorie must have been and based on where her servant quarters and kitchen were located, it was physically clear that she cared for and treated her staff with respect and kindness. That is part of the legacy she left behind. She was known to be a shrewd business woman, who could entertain Washington's elite, and yet was a genuine and caring person. I think that is somewhat evident in the fact that she designed her home for future generations to see, appreciate, and to give us a glimpse into the life and times of prosperity which no longer exist within our Country.

I have to say that by today's standards we would enter the Hillwood mansion and feel that the décor is garish and overdone. After all, the Louis XVI style is not something we see much of anymore. Yet there are things within her home that are exquisite from her extensive Faberge egg collection, to her amazing collection of fine china. Patterns and colors which could take your breath away. Marjorie's third husband was the US Ambassador to the Soviet Union, and as such she lived there for almost two years. During that time she collected a vast array of silver pieces, religious icons, and other works of art. Every corner of her house showcases part of her collections. I must admit however, that I was intrigued with Marjorie's shoes. I LOVE shoes!!! With a woman of Marjorie's means, one would expect an amazing shoe collection. But notice here that ALL her shoes were the same. They are only different colors! This was by design, because she believed a shoe had to be comfortable first! Once she found a comfortable shoe, she commission the shoe company to provide her the shoe in a rainbow of colors.

Marjorie bequeathed Hillwood to the Smithsonian Museum. The Smithsonian claimed the property for only a short period of time and then gave it back to the Family trust and foundation. Hillwood is off the beaten track and also it is small and can't be open to massive amounts of public traffic daily. Therefore this wasn't an ideal Smithsonian property. However, before the Smithsonian gave the property back, they did claim many of the wonderful jewelry pieces that belonged to Marjorie and these pieces are on display in one of the museums associated with the Smithsonian. Nonetheless, these emerald and ruby pieces are housed at Hillwood and they were quite extraordinary!

I did not care for Marjorie's wallpaper tastes at all and frankly though I LOVE the color pink, I hated the pink tones she used throughout her home. Marjorie had a servant who weekly retrieved dresses out of her home's storage space. Therefore her closet only contained the items she would be wearing within that week's time. Clothes were constantly revolving in and out of her closet.

I think the mansion is certainly worth seeing and exploring, but so are the gardens. The gardens are so peaceful and inviting. Here is one rose garden in particular, but there are other roses throughout the property. In fact, Marjorie called her outdoor gardens, "garden rooms." She literally expected each garden to reflect an historical style that was combined with current horticultural designs. She wanted the garden rooms to have a distinct character and yet fit into the estate as a whole.

Flower beds were blooming everywhere. The grounds crew tries to maintain the property the way that Marjorie had it so that we can get a feeling for how grand the property was as well as have greater insight into the woman behind the property.

Marjorie also incorporated a Japanese Garden into her grounds. The sound of running water can be heard from right outside the house. It is an immediate escape to tranquility. If you can't tell, I much prefer her gardens to her actual house, yet after visiting this property, I have to say that Marjorie gets her guests to reflect upon their own legacy. How do we want to be remembered? I am sure the answer is different for each of us, yet Marjorie is remembered for her kindness, generosity, compassion to help people who needed support (in fact after she died, her accountant found out that she had been supporting 50 different friends financially for years, and she never said a word), and of course for giving us the beauty of Hillwood.

Monday, May 20, 2013

Monday, May 20, 2013

Tonight's picture was taken in May of 2009, at the first Mattie Walk. Our Foundation Walk was actually the brain child of our team Mattie supporters. The Walk was designed to support Mattie and show him how many people stood behind him in his battle. This photo is priceless to me. At the Walk in 2009, Mattie performed several magic tricks with Bob Weiman, Mattie's head of the lower school. My faithful readers may know Bob as the "Magic Man." The Magic Man visited Mattie consistently in the hospital and at our home. Bob taught Mattie magic and in so many ways, like Legos, magic was therapeutic for him. Legos enabled him to come out of his shell (which was where he lived most days as a coping mechanism to fight chemotherapy and the ravages of limb salvaging surgeries) and relate to others. Nurses and Mattie's therapists were intrigued that Mattie knew magic tricks and they would encourage him to perform and chat about what he was learning. Magic was a saving grace, which is why Bob will always hold a special place in my heart! In honor of their connection, Bob performs each year at our Foundation Walks. When I see Bob's show at the Walk, I am transported back to the day you see before you in this picture. Also important to mention is.... look who is holding an umbrella over Mattie's head in this photo? It is Brandon, Mattie's big buddy! Brandon's family comes to our Walk each year and supports us in so many different ways.


Quote of the day: Don't cry because it's over, smile because it happened.  ~ Dr. Seuss

The weekend felt like a whirlwind of grand proportion. Part of me is still processing through the Foundation's Walk from Sunday. We said goodbye to Peter's parents today and my lifetime friend Karen this evening. We are slowly digging out of Walk supplies. But I remind myself that it took months to put materials together, so they aren't going to magically go back into storage within minutes. It will take time and effort. Effort which I just do not have in me at the moment.

In previous years I have always used my own camera to capture photos of the event in action. We do have a professional photographer who covers the event for us, but I never venture far from my trusty camera. However, this is the first Walk in which I was SO busy that I honestly couldn't take photos. I was busy mainly running the event, and with new activities added to the Walk this year, it added to the complexity of the day. I am so happy that when Peter turned to Facebook today, he found a Mattie Miracle album that Fusebox (one of our teen bands) created and posted. So the photos below came from that wonderful album.

One of the events we added to the Walk this year were zany adult relay races! Because this was a new event, I felt it would be important for me to reach out to certain Mattie Miracle supporters and encourage them to create a team to launch our concept. We couldn't of had two better teams. These teams also fundraised for us and together generated $4000 to Mattie Miracle! Way to go teams!!! One team was named, "RCC Moms Rock." This team was captained by our friend Ann (the zany one with the shorts on) and it was comprised of 9 other amazing Resurrection Children Center moms! Pictured with the hat on her head is Kathy. Kathy was a RCC mom, but she was also one of Mattie's preschool teachers. Kathy and Mattie understood each other and she brought out the best in him. As you can see, Kathy and the team were participating in the "Strike a Pose" relay race and it was down right hilarious to see these teams in action.

Our other amazing team was Foxy Voxi, captained by Grant (pictured in the white hat). Grant was actually the first person I asked to captain a team and his response was a beautiful YES. A yes without hesitation. Which was appreciated more than Grant probably knows. The team was comprised of 9 other Voxiva employees or family members! Voxiva is the company which employees Peter. So it was very meaningful that Peter's colleagues supported us in this way. In this photo, the team was doing the "All tied up" relay. Literally we gave them a ball of twine and they had to wrap it around each other. It was a riot and a mess at the same time, because the twine knots up very easily. But they kept their cool, strategized together how to solve this problem, and really worked as a team. Which was a great dynamic to witness! The spirit of the relays was excellent and truly it was a spectator sport at the Walk. It grabbed a lot of walk attendees' attention!

I am signing off for the evening and as I get more photos, I will share them with you! A big Mattie Miracle thank you to our relay teams! Everyone was a great sport and full of energy and positive team spirit.
 

Sunday, May 19, 2013

Sunday, May 19, 2013

Tonight's picture was taken in May of 2009, during the first Mattie Walk. A Walk that has now evolved into the Mattie Miracle Walk and Family Festival! As you can see Mattie was being pushed in his wheelchair (by Brandon, his big buddy, who you can't see) and Mattie was greeting one of the baseball coaches at his School. I can't think of a Walk without thinking of this moment in time. Even though this photo was taken five years ago. To me Mattie's presence lives within our May Walk and what will always inspire me no matter how tired I am.  


Quote of the day: Strong lives are motivated by dynamic purposes. ~ Kenneth Hildebrand


It is now 11:30pm, and I have finally stopped moving for the day. I was up at 4am focused and working and spent a full day trying to execute a successful Walk. I can elaborate on the Walk more tomorrow. Right now I am too brain dead. We made many new additions to the Walk this year and as such, I could sense a change in energy. The walk was vibrant, energetic, and full of life. Of course this is all very different than how I feel internally or for that matter the reality that is associated with childhood cancer. Nonetheless, I am thankful for our volunteers, for our steadfast friends and family who stand by us to make this Walk happen, and don't you know it....... the SUN finally came out. It was my Mattie sign!!! He was with me yet again today at his Walk! We couldn't see him, but his brilliance shone through even with the worst of cloud cover! Goodnight and a BIG THANK YOU for everyone who made today a success!