Mattie Miracle 10th Anniversary Walk was an $119,000 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

April 9, 2011

Saturday, April 9, 2011

Saturday, April 9, 2011

Tonight's picture was taken in April of 2006, outside of Mattie's favorite restaurant. It was a beautiful spring day, and in comparison to our current existence, it was a picture that captured the innocence of life without cancer.

Quote of the day: Grief is the price we pay for love. ~ Elizabeth II

Today was yet another cloudy, grey, and rainy day in Washington, DC. This weather is not helping my mood. Peter and I both spent the day working on things. I was focused on Foundation items as well as preparing for my last kindergarten art session coming up this Wednesday. While I was doing all this, Peter began our spring ritual of planting flowers. Peter bought beautiful blooming Forget Me Not plants and like last year, planted them in Mattie's honor in our balcony flower boxes.

In addition, Peter moved all the plants that were inside our home to our outdoor spaces. My living room has been transformed from a jungle of plants, back to more open space. It was actually a very freeing thing to see! After a day full of chores and work, we decided to go out to dinner. We ventured to Mattie's favorite restaurant, and to our dismay we learned the manager of the location, who we loved, is no longer working there, he has moved to the Gallery Place location in Washington, DC. Somehow this was a change that I wasn't anticipating and for some reason this upsets me because the manager knew Mattie and he helped to keep his memory alive for us each time we returned to the restaurant. Of course this will always be Mattie's favorite restaurant, but this will not mean the same thing to the new manager. Ironically this upsets me.

As we were having dessert at the restaurant, I saw Peter smile and jump up. I had no idea what he was doing, but then understood. Charlotte, Mattie's "girlfriend," and her parents were also dining there, so we had a chance to catch up and I got to hear about Charlotte's day. This week in school, Charlotte had the reverend say a special prayer for Mattie in honor of his birthday. I was very moved by this gesture and about Charlotte's memory of her friend.

April 8, 2011

Friday, April 8, 2011

Friday, April 8, 2011

Tonight's picture was taken in April of 2006 at Mattie's favorite restaurant. We took Mattie out that day to celebrate Easter. He was visited by the Easter Bunny while we were having lunch, and Mattie was thoroughly scared of the life sized bunny in the room. I remember when I was Mattie's age, I would hide under a table when any of these life sized characters would approach me. Mattie handled it a lot better than I did. Mainly because I served as interference between him and the bunny and in this particular case, I told him that this bunny was not real, that there was a person dressed up as the Easter Bunny, because the real bunny couldn't make it that day. He was busy delivering too many eggs!

Quote of the day: When people repress grief, the grief finds its way out, typically as guilt or anger. Certainly using a hammer appropriately can be a way to exorcise their anger. ~ Steve George

Today was quite the day! I literally had an eight hour counselor licensure board meeting! I knew it was going to be a long meeting, since I was presiding over an ethical violation hearing, but as more information was revealed in this trial, the matter became more complex and cumbersome. Naturally I am not a lawyer, but we are fortunate enough to have an outstanding board attorney who has been working with us for the eight years that I have served on this board. This attorney gives me a script to follow to conduct the hearing, however, with human dynamics, scripts have to be somewhat flexible. It is funny, because the board staff and many of the board members view me as feisty. I am okay with feisty and competent honestly and sometimes feistiness and passion are needed to get tough jobs done. For some reason I feel as if I am accomplishing big issues this year for the board, and I can't quite explain why that is happening. Nonetheless, I continue to be proud of the work of the board and I very much appreciate this role. Not a feeling I harbor for most things these days.

It was another gloomy and rainy day in DC, but after sitting for so many hours, I welcomed even walking in the rain to get home. Peter has been trying to recover today from his extremely tiring and grueling plane trip home. However, despite being away for two weeks and having to adjust to different time zones, I can hear that his trip was productive. In addition to it being productive he was able to connect on a personal level with the people who report to him in Rwanda. In so many interpersonal ways Rwanda is far more advanced than we are in the States. I imagine our work culture used to be like this at one time, rather than how it has evolved into a completely impersonal experience. In Rwanda, listening to each other and human connections are vital to the level of work accomplished and the amount of respect received. In a way, these connections can enliven the human spirit and inspire creativity and more productive work. So I have been enjoying our dialogues about his business experiences in Rwanda.

This evening over dinner, Peter happened to tell me a story in passing about his trip to the Department of Motor Vehicles today. He took my car in for an inspection and while there, he could hear a man (who was out of his sight) cursing and was very upset. Peter followed the sound and found an older man lying on the ground. This man was getting his car inspected too, however, as he was walking through the facility, he tripped over a curb and landed on the ground. Peter basically sat with the man, talked with him, until they determined together that he was okay and hadn't broken anything. Peter also checked his mental status (got to love him!), and asked him questions about what day it was and where he currently was. The man eventually got to his feet and they parted company. On Peter's way out after the car was inspected, this same fellow approached Peter to thank him for caring and helping him. I was very moved by this whole interchange and yet very disturbed that no one else stopped to help this man. As I said to Peter......Character is doing the right thing when nobody's looking. I was touched by his good deed and even more amazed that he told the story matter of factly without seeing the act of kindness he performed.

April 7, 2011

Thursday, April 7, 2011

Thursday, April 7, 2011

Tonight's picture was taken in April of 2006 at the Reston Zoo (in VA). Mattie loved this zoo because it is really designed for small children due to its size and the fact that you can PET every animal there! In this picture, Mattie and I were waiting for a wagon to pick us up and take us to the field to look at the ostriches! That day Mattie got to hold a real ostrich egg, which is enormous! Bigger than a grapefruit! It made an impression on both of us. 

Quote of the day: This is a constructive thing to do with anger and grief. Planting a tree or a garden is a way to acknowledge the frustration in a positive way. ~ Gorman Parrish

I couldn't agree with this quote more! All I know is I would never have made it through last spring and summer without having gardens to plant and care for. Not only did Peter and I have ours at home, but I took on Ann's garden full time. It was very therapeutic.

I had lunch today with Carrie, the chair of the parent advisory board at Georgetown University Hospital. I am enjoying getting to know and work with Carrie, and since she too lost a child at the Hospital, we have a lot in common. In some ways we have similar fears, outlooks, and perspectives on life. As I said to her, and as I have said numerous times on this blog, we have survived a trauma. So we are dealing with the toxic combination of grief and trauma, neither of which are easy to come to terms with much less peace.

I am happy to say that Peter made it home safely. After 22 hours of travel, he is naturally exhausted but happy to be home. I sent him to Rwanda with my camera, and so when we got home, he showed me all the pictures he took. I really wanted to see what the country looked like and understand what he was experiencing there. Below are several pictures I would like to share with you!


Here is a picture of the Laico Hotel where Peter stayed for two weeks. The hotel is really a compound in a way, because it is surrounded by gates which are guarded 24 hours a day. Peter always described the property as lush, and seeing a picture helped me relate to his observations.









This was the scene from Peter's hotel window. In so many ways, it reminds me of aspects of California. This picture gives you a feeling for the rolling hills and greenery of the Country!












This was a picture of Peter's hotel room. I am posting it because I want you to note the netting hanging from the ceiling over the bed (to prevent insect bites at night-- if you leave your window open). Traveling to Rwanda is NOT an easy process. Peter had to be vaccinated for the following diseases:
Yellow Fever
Hepatitis A and B
Typhoid
Diphtheria
Pertussis
Tetanus
Malaria


On Peter's breakfast table one morning was this beautiful orange colored rose. A color that reminds us of Mattie!














The hotel's property was filled with trees, plants, and flowers. Rwanda remains the same temperature year round, so much so that the hotel rooms have NO central heat or air.  






Peter captured three amazing birds on the hotel property. The first was an
African Golden Oriole. This bird lives in a hanging basket-shaped nest, built in a tree, usually containing two eggs.









The second bird, which fascinated me, because it was just roaming around the hotel property and interacting with guests was the Grey Crowned Crane.
The Grey Crowned Crane is about 3.3 ft tall and weighs 7.7 lbs. Its body plumage is mainly grey. The wings are also predominantly white, but contain feathers with a range of colours. The head has a crown of stiff golden feathers. The sides of the face are white, and there is a bright red inflatable throat pouch. The bill is relatively short and grey, and the legs are black.

 
 
The third bird looked enormous and intimidating.The Augur Buzzard is probably the most commonly seen bird of prey in Africa. The belly and chest are all white with specks of gray. The rest of the body (except the tail) is slate-gray with white specks. The tail feathers are red, hence the nickname, African Red-Tailed Hawk. The beak is yellow up to the very end, where it turns gray.






Peter works for a company called Voxiva (www.voxiva.com). While in Rwanda the company moved office locations. Its original location was in the bottom floor of this building.












Here is Voxiva's new building. To me it looks like a night and day difference from the previous building. The location is wonderful, right near the American Embassy and I am so happy for the Voxiva employees because in my perspective one's physical space is VERY important to the climate and health of the work environment. I was thrilled to see this new space which is bright, spacious, and professional looking.






Though this is NOT the whole team, this picture features some of the wonderful people working for Peter and accomplishing great things!

Pictured from left to right are:
Kizito (Project Manager of TRACnet), Koama (Cognizant Technical Officer of CDC Rwanda), Eliachim (Voxiva/Rwanda SRL Country Manager), and Peter

April 6, 2011

Wednesday, April 6, 2011

Wednesday, April 6, 2011

Tonight's picture was taken in April 2006. I was outside on our deck watering the plants. Mattie came out to observe me and wanted to be treated like a plant. So literally I took the hose and watered him. He thought it was an absolute riot!


Quote of the day: There is not a day that goes by that it doesn't cause me serious grief. ~ Rob Mitchell


I began my day at Mattie's school, in Donna's kindergarten classroom. I was there to conduct my second art session with the children. Last Wednesday we discussed Picasso and today we focused on Henri Matisse. You may be asking yourself...Why are we focused on these two artists only? It is the result of the wonderful children's book by Nina Laden entitled, When Pigasso met Mootisse. Donna introduced her class to this story earlier in the year. At the end of the book, the author encourages the children to learn more about these two rivals, who are considered the two most famous artists of the 20th century. In the Fall of 2010, Donna invited me to her classroom. She wanted to give me the opportunity to interact with the children, and she asked me what things or topics interested me. When I happened to mention art, she told me about Laden's book and her desire to expose the children to these artists. The rest is history. Donna and I have been brainstorming this project for months and I have worked hard at trying to present these artists in a fun and memorable way. My goal was to bring these great men to life and to also enable the children to see that art is within them. I want them to acknowledge that they are all artists and that art is a wonderful form of self expression and emotions! 

I am fortune that my friend, Christine, has volunteered her time to help out during each of these art sessions. Because we really need her assistance and her insights. Each week, Donna records our reactions to working with the children, and Christine and I usually dialogue back and forth about her observations. Christine doesn't have a child in this classroom, she is simply making the time to help and spend time with me. I consider that not only touching, but the sign of a good friend.

The children remembered me from last week, and in a way, that recognition helped us jump right into content this week. I have been an educator to college and graduate students for many years. So I admit the five and six year old age group isn't where my training lies. I began this week's presentation by asking them questions about what we covered last week. I was expecting very little carry over to be honest. But guess what?! I was VERY wrong. They remembered Picasso, they remembered he was a cubist, that he was born in Spain, that he liked to paint at night and his studio was a mess. They remembered he began drawing and painting when he was their age, and actually as they kept reflecting on content, I was simply amazed. Those little brains are very much soaking up material and taking in all the visual cues I am showing them!

After our recap of last week, I began today's lesson by handing them stickers of the French flag. Since Matisse was born in France. Last week we visited Spain and this week we journeyed to France. I created a PowerPoint of slides so the children could see what Matisse looked like as well as see photos of his actual paintings. The children were fascinated to learn that Matisse grew up in a part of France close to the Belgium border. A location that wasn't the recipient of much sun. The buildings and town that he lived in were drab and really lacked color. Yet Matisse was known as the Master of Color! I asked the children how he could have learned about and developed such vivid colors in his art work if he wasn't surrounded by them. It turns out that Matisse's parents owned a seed store in town, and the store sold house paints. Matisse's mother helped customers pick out and match paints, and she passed on this skill to Matisse. In addition, Matisse's extended family were weavers. When he went to these factories, he could see materials dyed in all sorts of colors. This was the start of his love with colors. However, art was NOT Matisse's first career. Matisse went to school to become a lawyer and passed the equivalent of the bar exam. It wasn't until his 20's did he fall in love with art.

When Matisse was around 20 years old, he developed an appendicitis, which made him extremely sick and bed bound for a long time. His mother was caring for him and noticed he was getting bored. I told the children there was no TV, computers, or video games back then. So instead to occupy his time, his mom bought him a box of paints and gave him some paper. One of Matisse's famous quotes was, "From the moment I held the box of colors in my hands, I knew this was my life." Matisse credits his mother for introducing him to art.......the true love of his life.

The children learned that Matisse was one of the founders of the art style called Fauve. Which in French translates into "wild beast." This was NOT a complimentary title, but it was one that was developed for Matisse by his critics. Fauve painting uses raw color, lack of details, and wild brush strokes. Matisse's art work was not appreciated in his home country until after he died. His art however was always valued and admired in America. When Matisse reached his early 70's, he was diagnosed with cancer. After his surgery, he remained wheelchair bound and was unable to stand up and paint. However, that did not stop this artistic genius from creating. In fact, Matisse's spirit intrigues me. He loved art so much that nothing was going to stand in his way, and in his mid-70s he developed a new art form that remains popular today! His famous art form was called cut outs. Matisse would cut out shapes in colorful paper, and with the help of an assistant he would arrange them in artistic ways. The creation of each collage of cut outs could take months or years to develop and perfect. Since Matisse was so ill, and really wasn't mobile, he used his cut outs to bring nature and the outside world into his home. He would create cut outs of landscapes and sealife for example. These cut outs would be pinned to the walls of his house, until he was pleased with the composition. So in essence his home became his canvas and as he often says, cut outs were "painting with scissors." I showed the children a 47 second video today of Matisse creating a cut out and collage. http://www.youtube.com/watch?v=qlnBcaZEGb0

Later in the morning, the children had the opportunity to create their own cutouts. I provided them with pre-cut paper as well as uncut paper. They seemed to love the uncut paper and loved the idea that they could generate their own patterns from their imagination! Wonderful! By the way, just like last week, today I asked the children to raise their hands if they considered themselves an artist. Last week three children raised their hands. This week, seven of them raised their hands. It is my hope by next week, all 15 raise their hands. I am trying to reinforce in them that art is about shapes, colors, and imagination. That the feelings and the thoughts they bring into art makes it unique and special. Therefore, we are all artists in our own right.
I captured some pictures of the cutouts being created today. As you can see each child had a piece of foam board, a paint brush for glue, and various forms and colors of paper.


We had several visitors to our class today. The presiding Bishop of the Episcopal Church was on campus today. He observed part of my PowerPoint presentation, and told Donna that what he was observing was wonderful and that his kindergarten experience wasn't anything like this. In addition, Mattie's school counselor, Susan, also came to visit us, and the kids were thrilled to share their art work with her. Susan mentioned that if art was taught to her this way, in a non-threatening manner, she may have developed her art skills.












I captured several of the cutouts today and wanted to share them with you. I loved the children's use of color and their own creativity with developing their own cutout shapes.



















The children titled their cutouts today. Some of the titles were precious. As this little boy was composing his cutout, I happened to ask him who these people were in his artwork. He told me about each of the members of his family!









This piece was entitled, "The Night Sky." It intrigued me and I wanted to share it with you.















Here is another thoughtful collage!
















As the collages were placed in a corner of the classroom, I snapped a picture of them together. They just are so colorful and highlight the uniqueness of each artist.



Just like last week, thanks to Donna, I have a wonderful voicethread to share with you. Just click on the this link below. Once the window opens up, the presentation will start on its own. Also you can click the right arrow key on the screen to advance pictures and see other videos!


http://voicethread.com/#q.b1892612.i0.k0

A VoiceThread is an online media album that allows a group of people to make comments on images, videos, and documents, really simply. You can participate 5 different ways - using your voice (with a microphone or telephone), text, audio file, or video (with a webcam). It's easy to control who can access and comment on a VoiceThread, which makes it a secure place to talk about almost anything: business and academic presentations, travelogues, family history, art critiques, language study, tutorials, book clubs and digital storytelling. A VoiceThread allows an entire group conversation to be collected from anywhere in the world and then shared in one simple place.

April 5, 2011

Tuesday, April 5, 2011

Tuesday, April 5, 2011 -- Mattie died 82 weeks ago today.

Tonight's picture was taken at Mattie's fourth birthday party. We held this party at a local nature center and the theme was dinosaurs. As you can see here, Mattie was about to blow out the candles, but before he did this, he decided to pull me over and ask me something. Knowing Mattie, he most likely was asking me what to wish for before he blew out the candles! Who knew, at age 4, that the ultimate thing to wish for was good health.

Quote of the day: We talk about the tasks of grief. Emotionally, we have to acknowledge the loss. The second task is to experience the pain. What happens when you are going through a trial, you are still in the pain. Hearing the graphic testimony is like taking a razor blade and slitting open a scar. Initially, with a shocking death like that, you go numb right away, and a year later, you hear the details, you are more aware. ~ Eileen Schmidt


I began my day by doing Foundation work, licensure board tasks, and preparing for the Matisse presentation on Wednesday. This will be the second session in a three part series. As the day wore on, I did some chores, and while out I received a text message from Shayla, Mary's caregiver. Shayla let me know that Mary missed seeing me, was worried about me, and wanted me to come over and visit and have lunch with her. Despite having things to do, I felt I couldn't turn down such an invitation. Especially when I knew Mary was worried about me and my reaction to Mattie's 9th birthday.

When I got to Mary's assisted living facility, we all had lunch together. Shayla and I were chatting, and involving Mary along the way. Shayla wanted to know how I spent Mattie's 9th birthday and how I was doing with all of this. I very much appreciated the opportunity to talk about this. However, at one point, Shayla and I noticed that Mary was disengaged. So I then asked Mary if our talking was bothering her and if she wanted us to stop. She motioned with her head, NO! I explained to Mary that it would be okay if she did not want to hear any noise, and as I was talking, I distinctly remembered Mattie's reaction to noise. I then asked Mary if she wanted us to continue talking and she said YES. I know Mary appreciates hearing dialogue and even when you think she isn't listening or processing what you are saying, SHE IS!


While Mary was resting this afternoon, I headed to Mattie's school, to meet with Donna. As many of my readers know, Donna is a kindergarten teacher at Mattie's school, and she is the teacher who has graciously invited me into her classroom to interact with her students. Last week we covered Picasso and this week, we are highlighting Matisse. On my way to Donna's classroom, I stopped off at Mattie's tree on campus. This little oak is beginning to bud, and as you can see many of the origami cranes that Junko and her mom created for Mattie's tree gathering (on Mattie's one year anniversary, in which his friends got to attach a crane to the tree in honor of their friend) are still attached to the tree. That in and of itself is remarkable, considering the wind, rain, and not to mention the snow we had this winter. Today, I added the pretty big blue butterfly to the tree, in honor of Mattie's 9th birthday. It was a windy day, and the chimes attached to Mattie's tree were twinkling away and almost calling attention to his presence.




Before I left Donna's classroom today, she gave me a special magnet. It is already up on my refrigerator, next to my most favorite angel. Though Mattie was not in Donna's classroom, Donna and I have connected on a very meaningful level. While chatting about tomorrow's lesson, we had tea together, and are continuing to get to know each other better. In a way, Donna is another gift given to me by Mattie.

















While chatting with Donna, I had the opportunity to interact with Bob Weiman (aka "Magic Man"), the head of the lower school. Bob showed me a project he and the school are working on using QR codes. Naturally being technologically challenged, I had no idea what Bob was talking about. Then he showed me an example and explained the concept to me. The maze like picture on the left is a QR code. QR codes are black and white squares that you may see in magazines, on signs, and online. They have the potential to do some remarkable things. A QR Code is a two-dimensional barcode, which has encoded in it a URL (web address), text, or other information. It can be read by a QR code scanner, including QR scanner smartphone apps. QR codes storing addresses and URLs may appear in magazines, on signs, buses, business cards, or on just about any object about which users might need information. Users with a camera phone equipped with the correct reader application can scan the image of the QR Code to display text, contact information, connect to a wireless network, or open a web page in the phone's browser. This act of linking from physical world objects is known as a hardlink or physical world hyperlinks. So basically we are getting to the point where all we will have to do is scan objects into our phones and data will pop up. We will not need to type in information.

As I told Bob and Donna today, they are both introducing me to the world of technology in education. When Mattie developed cancer, the University I worked at was just bringing in all sorts of technology into the classroom. But I never learned to use a smart board (which is basically an interactive chalk board, except there is NO chalk, and instead the board is literally like a computer screen in which you can touch the whiteboard with your fingers and get it to perform, surf the web, and so forth). It has been a real learning experience to see what the cutting edge technology is like now in the classroom!

This evening, I went back to visit Mary and helped her with dinner. After dinner, she proceeded to tell me that she considers herself lucky. I must admit I had to stop and think about that. After all, she lost her son to cancer at a young age, she recently lost her husband, and she herself is dealing with a progressive neurological disease. When I asked Mary why she considers herself lucky, her response was because she has a friend like me. A beautiful comment, which is very needed during a challenging week.

As I drove home this evening, I noticed as soon as I got off the highway, that there were police everywhere. They blockaded all the roads to my home. It must have been a 15 block radius impacted by this. Literally I sat on the road, with hundreds of other cars for 45 minutes. We all shut our cars off and just sat there, until the President and his motorcade drove by. I have to tell you based on how I was feeling, I wasn't happy about sitting in my car with hundreds of people, barricaded from accessing my home.

I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend. Kristen wrote, "Vicki...thank you again for coming to meet me yesterday. It was such a great night. Peter....we missed you! Have a safe trip tomorrow back home! And...this Tuesday and everyday...thinking of you and thinking of your sweet Mattie."

The second message is from my friend, and our Walk raffle chair, Carolyn. Carolyn wrote, "Last night when we finally got home (after 8pm) – it was gorgeous outside – warm and breezy – and Ellie and I stayed outside for a few minutes to listen to the neighbor’s wind chimes. Every time I hear these chimes I think of Mattie – so we “lingered” in the beautiful weather and looked up at the sky and wished Mattie a Happy Birthday. Leave it to Mattie to give us all a gift on his birthday – a gorgeous spring day!"

April 4, 2011

Monday, April 4, 2011

Monday, April 4, 2011 --- Mattie would have been 9 today. Happy Birthday Mattie.

Tonight's picture was taken on Mattie's seventh and last birthday. Mattie celebrated his birthday twice that year. This actual party was held at the Hospital in the childlife playroom on April 4, 2009. Several of Mattie's closest friends attended and as you can see Jenny and Jessie (Mattie's art therapists) created a super card for Mattie, with pictures of roaches on the front. As many of my readers know, Mattie loved things that were creepy and crawling, and Mattie was known to scare his nurses with all sorts of fake bugs. In fact, on the ceiling of the Lombardi Clinic at the Georgetown University Hospital is an enormous roach that Mattie painted on a ceiling tile. Though Mattie is gone from this world, his artist humor remains with us for other children to see and appreciate.

Quote of the day: Often we wonder in our grief what is gained by our belief? Although night, and morning we pray, still our joys are swept away. And loved ones we would keep, with the dead are called to sleep. None is wise enough to say why the wicked seem to stay, and the beautiful and good leave before we think they should. But if death seemed always just, soon in God we’d cease to trust. If for evil, death were meant as a bitter punishment; should the wicked only die, then heaven we seek on high. Having none we long to see would a fearful religion be. It is only by belief we are comforted in grief; it is only by our trust that the God we love is just. That we bear divinely planned. Grief’s we cannot understand. ~ Edgar Guest


To everyone who wrote on Facebook, sent us emails, shared a story with me, and donated to the Foundation today, we THANK YOU! We received emails from family, friends, and the heads of both Mattie's preschool and the St. Stephen's and St. Agnes School (where Mattie completed kindergarten). We received incredibly generous donations from friends today, who do not want to be named, but who wanted to honor Mattie by contributing to the Foundation on his birthday. Mattie's kindergarten buddy, Campbell, also donated to the Foundation today in honor of their friendship. I found that SO touching. It was a hard day, and a day which makes me feel further removed from reality. Which is why your emails made a big difference to me.

I started my day at Virginia Hospital Center (VHC). I had a mammogram scheduled. That may sound like a strange thing to schedule on your child's birthday, but for me, visiting VHC made sense. VHC is where Mattie was born and also where he was diagnosed with Osteosarcoma. Nine years ago today, I was at VHC, and something pulled me back there. VHC is a very efficient and well run hospital, and basically I was in and out of the facility within 25 minutes. After my hospital visit, I headed to Roosevelt Island. A favorite place for Mattie.

I must admit, I have never walked the Island alone. I typically do not like walking in more desolate areas alone, but today was an extraordinary weather day. It was in the upper 70s, which was UNUSUAL, considering it has been freezing for the past two weeks, and tomorrow the cold returns. It was only today which was special and glorious. There were SO many people walking about on Roosevelt Island, it was hard to believe it was a Monday, and not a weekend day. 

I brought to the Island, one packet of Forget Me Not seeds. I typically like to plant seven packets in honor of Mattie's seven years in our lives. But because Peter wasn't with me, I decided to only plant one packet, and we will do the rest this weekend when he returns from Africa.

I found a spot on the Island, right near the water, and the crinkly hedge apple tree that Mattie loved, to plant the seeds. I planted them at the base of this tree shown in the photo. The tree is in a more secluded part of the Island, but a part that Mattie loved to visit, to climb on rocks, and to run along the sandy beach nearby.

While walking on the Island, it was evident that spring had sprung. There were wild flowers and other plants in bloom. It was clear to me that other people have planted on the Island as well, since I saw daffodils and other flowers grown from bulbs.











I walked to the beachy part of the Island. Mattie loved this particular section, which overlooked Georgetown University. We used to love this view when Mattie was well! Now of course I can't help but look at those spires and think of cancer and hospitalization.










My friend and colleague, Denise, wrote to me and encouraged me to be open to signs from Mattie today. Her comment registered with me. Sure enough I received three signs from Mattie along my Island journey. The first sign was the sighting of this beautiful Great Blue Heron. Mattie and I loved watching herons together. Great Blues are huge and yet so graceful and watching them walk through the water to catch fish to eat is a sight to see. I watched this particular bird for several minutes.
Along the boardwalk, I photographed these cedar knobs. Mattie loved this tree and the shoots that it gave off. To us, these knobs looked just like knees.
As I continued walking along, I heard something moving along side me. I couldn't see anything at first. But I just stopped walking and continued to wait for a sighting that matched the sound. Sure enough, I found a family of snakes. So this was the second sign from Mattie to me! Mattie would have been beside himself with delight. I HATE snakes with a passion, but I did stop to photograph this colorful fellow, because in a way this snake was sending me a Mattie message.
Though I did not share Mattie's interest in snakes, we both loved ducks. They were my third Mattie sign! The ducks were out in full force today on the Island.
I spent the day by myself. On difficult days like today, I would imagine some people cry. I know Peter did at various points in the day. There are times I wish I could do this, but on highly stressful days I retreat emotionally and brace for the worst. I carry my stress and grief internally. It is only days later after the let down of the day is behind me, will my true emotions come out. I did venture out with Kristen tonight for dinner. As my readers know, Kristen was Mattie's oncologist and our friend. She did not want me to spend the day alone, so I met her in Maryland. Since it was a beautiful weather day, we had dinner outside and sitting on my chair awaiting me were 9 glorious red tulips (9 to celebrate Mattie's 9th birthday). As you can see in this picture. Red was Mattie's favorite color, and it has always been my favorite as well. Kristen and I chatted about all sorts of things from cancer, foundation work, to friendship. Kristen and I have a lot in common, and we are both sentimentalists at heart. I think our interactions with each other at the hospital were bound to lead to friendship.

As I promised this weekend, below you will find the letter I wrote to Mattie, which was on display during his celebration of life service on October 10, 2009. Within the letter I share the events around Mattie's birth. A story he LOVED hearing. I hope you enjoy it as well.

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My Dearest Mattie,


It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.

This video is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.

Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.

So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.

I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.

When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.

The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.

Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and though those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!

Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!
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I would like to end tonight's posting with four powerful messages. The first one is from my mom:

The Sadness of April 4th by Virginia R. Sardi

It was the happiest of days once in another lifetime. The birth of Mattie on April 4, 2002 was a momentous event and I can remember the joy of welcoming him into our family with open arms. Watching Vicki interact with Mattie from the moment he was born was to witness the bonding of two like minded spirits destined to connect with each other deeply and spiritually, always on the same wave length. Unfortunately it was to end too soon. Yesterday, while walking on the track in the Burbank Hills, I met a little girl who plays softball with her team. I have seen her on a number of occasions because I walk and she plays softball at about the same time. She is about the age Mattie would have been if he had lived roughly 9 years old. She is engaging and quite social for her age and she ran to the fence separating her from the track to greet me. Her father was nearby and after he saw our interaction, he introduced her to me and I introduced myself. Her name is Olivia and she at once brought back Mattie’s memory to me in a flash. I thought, he should be playing ball in the field with Olivia having the time of his life but of course, that can never be! It is the denial to Mattie of all that matters in life: family, friendships, growth, wonder, and living life to the fullest that is unbearable. Those of us who love him are left behind to contemplate what might have been with the knowledge that it will never be. On this day, the chasm of loss deepens for the irony of his 9th birthday is that he is not here to celebrate it with us. Is it any wonder that April 4th has become the hardest and saddest day of the year and will remain unalterably so for the rest of my life?

The second message is from Peter. He sent this to me in an email this morning. Peter wrote, "I huge happy birthday to our special boy, Mattie on his 9th birthday!!  I know we would be celebrating most likely this past weekend.  I know I wouldn't have been on the road, but rather there with the two of you celebrating his 9th!  So, I am celebrating on my own today, of course while being sad at the same time.  Mattie came into our lives on this day nine years ago, and I am the better for having known him, in spite of the torture and horror of watching him slowly slip away from us and having him die in our arms.  I learned so much from Mattie and he taught me so much about myself, about being a parent, a father, a friend, and a person.  His lessons will remain with me for the rest of my life, and for that I am forever grateful to him.  He is a part of me, a part of us, that no matter what happens, will always be with us, and will always have made a positive impression on us.  Granted, there is the nightmare of a life with we live without him now, but I cannot focus on that right now, as I do not want to have anything take away from noting this day, nine years ago, that forever changed my life for the better.  So happy birthday Matts!"

The third message is from our close family friend, Janie. Janie wrote, "Just arrived home from a trip to Park City, Utah and as I usually do went into Vicki's blog. Read that the 4th was Mattie's Bday. One can not imagine the pain connected with losing a child to this horrible disease. Then the dates of "special events" happen and where do you place yourself on those occasions. Continuing your blog, Vicki, has been a gift to all who have known you and Peter. You are a daily reminder of what happens to families that have to deal with this horrible disease."

The final message is from our friend, Tanja. Tanja wrote, "Just wanted to let you know that we did not forget Mattie on his birthday! This year, to celebrate his life and legacy, we went into our backyard -between the tree swing and the parsley (where I was startled a few times by these magnificent caterpillars) and blew 9 of our bird's Ginny's feathers in the air! The wind just picked them up and took them high up in the air. Then Katharina and I had a milk shake looking at our tree swing, which was moving gently back and forth. Also, I forgot to tell you that my parsley with the caterpillars provided me with plenty of fresh greens throughout the winter!!!! No snow, ice rain and frost made it go away! My mother was astonished!!! Not even during the mildest of winters did her parsley ever grow (it would hibernate and come back in the spring). One more thought: today was a perfect Mattie Sun Day!!! It can't be a coincidence that after weeks of chilly weather, today was beyond glorious!!! Your son is AMAZING!!!"

April 3, 2011

Sunday, April 3, 2011

Sunday, April 3, 2011

Tonight's picture was taken in April of 2006, as Mattie celebrated his fourth birthday. He had a dinosaur themed party that year, and we held his event at a local nature center. Mattie loved that party because he got to touch things like snakes and other creatures that I wasn't thrilled to see. Mattie was very excited that morning before his party and he was very eager to see his cake and share the day with his preschool friends!


Quote of the day: Sometimes the best therapy I can recommend is getting a new puppy or kitten. It's not a betrayal of their other pet; it's just a new beginning and a way to move past the grief. ~ Julie Breault

Tonight's quote intrigued me. Many of us have experienced the close, special, and tender bond with a pet. However, when your close furry friend dies, it can be a very difficult loss to accept. Our pets mean a great deal to us, and I think in many cases, with family and friends geographically so spread out now a days, our pets become a significant part of our daily lives. As I read this quote, I certainly understand the sentiment behind it, and the need for a new beginning. I have had people talk to me over these past few months about establishing a new beginning. Whether that be moving, returning to work, starting a new career, and the list goes on.

The problem with a NEW BEGINNING, is that means in many ways that you have reached some sort of closure on your former life. Or if not closure, you have willingly decided to close a chapter and open up a new one. Exactly how does that work though when you have lost a child to cancer? New beginnings are not possible, because I never elected to this forcible change in my life. I have a life, and it is different from what I imagined it to be, but it is most definitely not a new beginning. Or a beginning I would wish upon anyone. I also think replacing one loss by adding something else isn't always the best solution. Clearly when grieving big decisions are hard to make, and one isn't always thinking straight.

Tomorrow is Mattie's ninth birthday. For Peter and I, it is a day we shall never forget. I was in labor for practically 48 hours, I had a raging fever during labor and delivery, and it was on April 4, 2002, that I first developed a severe headache. A headache that has never left me. On the days I wonder if I was ever a mom, I just think back to April 4, 2002, and realize that I have lasting physical signs of Mattie's birth. Clearly I have a c-section scar and these chronic headaches. Headaches strangely enough remind me of the day I became a mom, and though I would love to know what it feels like to be normal again, I realize these headaches are symbolic of a bigger picture.

Most parents reading this blog know how to celebrate their child's birthday! It may involve sending out invitations, a party, a family gathering, food, and/or cake. However, how to you celebrate the birthday of your child, if he/she died from cancer? The answer is NOT simple. I can assure you Hallmark doesn't make a card for Peter and I, wishing us a happy birthday to your dead son. Most people in our lives are not sure even how to handle the day. Don't feel bad, because neither do we! However, what I do know is not talking about Mattie's birthday and people not acknowledging the day doesn't feel right. Because that instead means that Mattie has been forgotten. I spoke to Peter today through Skype and though he is working around the clock, he too is perplexed about tomorrow.

In the midst of this great sadness, I received several wonderful pictures from Carey, Lauren's mom. As many of my faithful readers know, Lauren is 13 years old and is an osteosarcoma survivor.
 
I met Carey electronically in September of 2008, when her sister introduced her to Mattie's blog. Lauren and Mattie were both diagnosed with osteosarcoma about a week apart from each other. Though Lauren lives in Pennsylvania, Carey and I became instant e-mail buddies as we were both fighting for our children's lives against the same horrific disease.
 
We went through similar treatment protocols and we certainly spent endless days and nights in the hospital. It helped to have an osteosarcoma mom to go through this with.
 
As Peter and I were planning this year's Walk, the theme, Faces of Hope developed. The first face that came to mind was Lauren's. Lauren faces each day with remarkable strength and courage and she uses her cancer experience to educate others and to make her community aware of childhood cancer. Particularly osteosarcoma, which is a form of bone cancer that does not get enough attention from the research and medical communities. The treatment for osteosarcoma, from a parent's perspective is barbaric, because it involves removing bones from your child's body, and then exposing your child to massive amounts of toxic drugs. Drugs which have devastating side effects! Drugs that originated in the 1950s, 1960s, and 1970s. There has been NO new drug developed to treat osteosarcoma in all these years!  
 
Lauren will be at our Walk this year on May 22, and will be addressing participants as she shares her experience battling cancer as well as the impact it has had on her and her family. Lauren established a non-profit called Bows for Hope. This non-profit grew out of a simple class assignment. However, Lauren brought the class assignment to life and actually created hair bows out of colorful duct tape and began selling the bows at her middle school. She decided to do this since so many people commented on how much they liked her bows. 
 
Lauren has had multiple bow sales at school and has raised thousands of dollars. However, the amazing and very touching part is Lauren's non-profit's mission is to raise money for the Mattie Miracle Cancer Foundation.  
 
In February, Lauren emailed me and asked whether I would write a letter on her behalf to the Shurtech Brand tape company (www.shurtech.com) requesting donated duct tape. Lauren wanted the tape so she could make bows to sell at the upcoming Mattie Miracle Cancer Walk. A face of hope designing bows for hope. It doesn't get better than that! I LOVED the idea and was happy to write the letter. Last week, Lauren emailed me to share the good news. Shurtech sent her a box filled with colorful duct tape!!! So the bow making process begins. Lauren has a whole team of friends who help her with production.
 
 
 
 
 
 
 
 
From my perspective Lauren is a very special 13 year old, and as soon as I heard the good news, I asked her to take several pictures of the donated product. So today, I have the pleasure of sharing this beautiful face with you, who as you can see is modeling a very pretty pink duct tape bow. I can't wait to see the finished products! I am intrigued by Lauren's tshirt and I have a feeling she creates her own tshirts to market her bows!

The Mattie Miracle Cancer Foundation is so happy to have teenagers like Lauren and Noah (our other face of hope, who is also an osteosarcoma survivor) representing us, speaking out about childhood cancer, and making a difference to help other children and families with cancer. To me they are outstanding role models for children and teens and they are wonderful reminders and motivators for why Peter and I do the work we do each and every day as a Foundation.