Saturday, May 19, 2012

Saturday, May 19, 2012

Tonight's picture was taken in November of 2008. Mattie had just had his second limb salvaging surgery. By that point the only intact limb he had was his left leg. This leg was cleverly renamed, Curious George. This was the perfect name for this leg because it literally got into trouble and Mattie used it almost like an arm. What was so incredible about this picture, was this was only days after a massive surgery, yet Mattie wanted to do something and decided he wanted to play on the computer. He couldn't use either arm, so instead used his left foot and leg on the mouse pad. If this picture doesn't scream out hope and determination, I don't know what does.


Quote of the day: I believe that if you show people the problems and you show them the solutions they will be moved to act. ~ Bill Gates

Today was a day of reunions. Peter's parents drove into town from Boston to be at the Foundation Walk on Sunday. So pictured from left to right are: Peter, Don (Peter's Dad), Barbara (Peter's Mom), Virginia (my mom), and Mauro (my dad). Both sets of parents gravitated to our garden area, which tells me that this space is perceived as cozy and inviting. This seemed like the perfect photo to take given in particular that tomorrow's Foundation walk theme is "Love of Family."

Unfortunately from my perspective battling childhood cancer is not finite. Once cancer has hit your life as a parent, the ramifications of the disease seem to remain with you. Regardless of the outcome. So in many ways, one does need the love of family to manage, cope, and recover with a lifetime of grief.

This afternoon, my parents and I went to pick up Karen, my lifetime friend. Karen arrived at Union Station and then we all went out to lunch together. I met Karen when I was only 11 years old and in many ways she is a part of our family. All seven of us had dinner together and I can't recall the last time we were able to do this. I know when I lived in Boston, these kind of dinners happened often, but as geography has separated all of us, these reunions have gotten harder. Naturally with Mattie's death, this has been very hard for all of us, because a crucial part of our dynamic is gone.

I am signing off for the evening. Wish us luck tomorrow for the Foundation's walk! For all of you who have registered, contributed, and supported us in some way, we THANK YOU!

Friday, May 18, 2012

Friday, May 18, 2012

Tonight's picture was taken in March of 2009. By that point, we were surrounded by SO many things in our home, it was overwhelming. Things kept piling up, and yet we were rarely home to contend with toys, gifts, mail, and supplies. On that particular day, Mattie decided to dress up in his knight outfit, and was being playful. I captured that brief moment in time. Brief because cancer changed Mattie's personality, which was totally understandable. Mattie went from a happy, well adjusted, and engaging child, to one who was ravaged by the disease. While undergoing treatment Mattie preferred to be isolated and experienced great depression and anxiety. These changes profoundly affected Peter and I, and yet we remained strong for Mattie.


Quote of the day: Really great people make you feel that you, too, can become great. ~ Mark Twain 

We are on final approach to the Walk!!! Only one day left of planning! I am quite tired this evening, but I wanted to share a lovely email I received from Mattie's preschool teacher, Kathy. Kathy and Mattie had a special bond, most likely because they both have a contagious energy and spirit about them. Kathy sent me this picture that her daughter took tonight while traversing the hallways of Georgetown University Hospital. The content on the poster was created by Mattie. Linda, Mattie's Child Life Specialist, involved Mattie in a special project in March of 2009. The project involved getting children and their parents to describe an ideal hospital room and setting. Naturally because Mattie was in love with Legos, he designed his vision using these wonderful colorful bricks and then created a whole story with characters to bring his Lego hospital alive. I recall the story above of Steve and Paul, two rambunctious boys who were patients in the hospital and HATED the food. Something Mattie could relate to. His story was fascinating to me because it was through his story I could see that he related to the two main characters, and yet wrote himself into the story line. The Mattie in the story, always saved the day by fixing and rebuilding things. Not unlike my Mattie!


I went through my electronic pictures tonight and found a picture of Mattie's Lego hospital that coordinates with the story you read above. Mattie envisioned and built this hospital room and outdoor play space all on his own. Mattie's Lego hospital room had a private bathroom and a large closet (both are things I always desired and he heard me complain about often!). Mattie and I played with this structure for hours and acted out the story of Steve, Paul, Mattie, and Sam MANY times!

Within Kathy's email to me tonight, she said, "On this special weekend, please know that Mattie is recognized by many as an extraordinary person, even people that he didn't know!"

Thursday, May 17, 2012

Thursday, May 17, 2012

Tonight's picture was taken in May of 2009 at the Mattie March. Mattie was sitting next to Zachary. Zachary and Mattie practically grew up together, and became instant friends in preschool. Actually on the first day of preschool to be exact. It was almost friendship at first sight! During the Mattie March, Zachary stayed right next to Mattie the entire time, despite the fact that Mattie was in a wheelchair, looking ill, and clearly was different from the friend Zachary once knew. Their friendship continued. Mattie and Zachary were both very active and their play (when Mattie was healthy) involved running around and being boys. However, when Mattie had cancer, this type of play was no longer possible. Sometimes when the commonalities between people end, so does the friendship. However, amazingly, despite their physical differences these two did not miss a beat with each other, and they found their own way to play and to interaction that worked!

Quote of the day: Without courage, we can not practice any other virtue with consistency. We can't be kind, true, merciful, generous, or honest. ~ Maya Angelou

Peter and I literally worked the entire day. Neither one of us ever stopped moving. I am sure to our blog readers, you must be asking yourself, what is Vicki doing? What could she possibly be doing for this Walk that requires this much time, planning, and attention? I don't know the answer to this question, other than the logistics of running such an event are enormous. Peter spent the day helping and getting a lot of Walk tasks completed and at one point, he turned to me and said.... "I am getting a good glimpse at what your days and weeks have been like!" Coming from Peter, the king of multi-tasking, I viewed that as a high compliment.

This morning, I had the opportunity to see my friends Junko and Carolyn. They both came over to pick up things for the Walk and to lighten the load of what I would need to carry to the Walk on Sunday. Seeing both of them really helped to break up my day. Carolyn bestowed upon me wonderful chocolates and these beautiful gerber daisies in bright Mattie colors! I am a big gerber daisy fan, so this perked me up, which isn't easy to do in my current state. I certainly did not expect this lovely surprise, but I guess it is in the unexpected that one can feel special and appreciated.

This evening we headed to the airport to pick up my parents, who arrived in from Los Angeles. They will be with us for a week, as they always come to support the Walk. When Mattie was alive, their trips to Washington, DC were quite frequent. Now they come once a year for the Walk. Coming to DC, I would imagine, has significant Mattie memories for them and is an emotional experience.

Wednesday, May 16, 2012

Wednesday, May 16, 2012

Tonight's picture was taken in May of 2009 at the Mattie March. As many of our faithful followers know, the Foundation is upholding a tradition that Team Mattie (our care community)  established, which is a Walk to raise money in the spring. In 2009, the money raised by Team Mattie went to Mattie's treatment, now of course it goes to Mattie's Foundation. In this picture, Mattie was posing with two of my undergraduate students at the George Washington University, Ariel and Tess. Ariel and I are still in close contact. Ariel is a faithful blog reader, and to some extent Mattie's story inspired her to become a pediatric nurse. Ariel went to nursing school and is now working at her first job in a large, well known hospital in New York City as a pediatric nurse. Ariel is a beautiful example of how Mattie's life and experience touched a young mind and heart. In fact, though Ariel is not geographically close to me, she contributed items by mail to Mattie's 10th birthday drive. That kind gesture speaks volumes about her.


Quote of the day: It is the shelter of each other that the people live. ~ Irish Proverb


I was hit with what I imagine was a very intense migraine yesterday afternoon. I couldn't eat, had nausea, and just kept vomiting throughout the day and night. Along with a violent headache! I did not sleep at all last night, because when you are sick to your stomach it is impossible to get comfortable. This morning at 6am, I decided to take zofran. In caring for Mattie I have become savvy enough to know what needs to be done medically or at least know how to get the help I need to achieve an outcome. When Peter was ill months ago, I had the doctor prescribe things for nausea. One of the drugs was zofran, a drug Mattie took when undergoing chemotherapy. Unfortunately for Mattie this drug did nothing for him, and we had to move onto something stronger. But needless to say I have a supply of zofran in our home. I was desperate this morning, and took it. That was a great decision because otherwise, it would have been impossible for my body to break this vicious cycle I was under.

I continued working but only from home today. I did NO running around, which was great because I wasn't physically up to it. Especially with no sleep and loopy from zofran. We are counting down until the Walk now, not in months or weeks, but DAYS! Though some of our signs at the walk are printed and laminated, many others are created by children and teens. I would like to share three with you tonight.

This evening Debbie, one of our children's activity coordinators at the Walk, sent me these wonderful pictures. Debbie has been very active with the Foundation since its inception and we work very well together because Debbie is very organized and into details. I gravitate to people like this because to me details are important and make the difference between an event that looks slapped together and one that is well thought out and planned. Debbie's daughters had a group of girls over today creating signs for our Walk. As you can see the girls are busy creating and I have no doubt when they are done, the signs will be colorful and capture your attention. Since the Walk is designed to raise money for children fighting cancer, I think it is very meaningful that children and teens are actively participating.

Another sign station at Debbie's house.

This is Eliza. She is the same age as Mattie and is in fourth grade. The same grade Mattie would have been in. Eliza is part of the sign making team today and as you can see is holding up a wonderful cupcake sign. We are very grateful to Georgetown Cupcake who donated 120 cupcakes to our event and of course we are very grateful to these girls who have taken time from their busy schedules and from homework to help the Foundation in this way!

Tuesday, May 15th, 2012

Tuesday, May 15th, 2012

"Healthy citizens are the greatest asset any country can have." ~ Winston Churchill

To all our devoted blog readers and supporters, this is Peter, as I am filling in for Vicki tonight.  Vicki is not feeling well, so she asked me to put up a simple posting and tell everyone she will be back tomorrow.  I think it's a combination of working too hard, stress and too much to do that has knocked her back tonight, so in preparation for this weekend's activities she is taking a night off.  Again, my apologies for the shortened blog, but Vicki will be back tomorrow not to fear! 

The picture above was taken in February 2009, and you can tell it was taken by me (given Mattie's look).  The picture was taken after midnight on that day as Mattie and I had worked most of the afternoon and into the evening, on assembling the house, which today, is still assembled and stands in our living room as one of the few physical reminders that we had a son, and another life and so much hope and promise at some point.   Mattie and I spent so many hours filling in the time between treatments, medications, pump resets and tests, by just trying to be normal and by doing normal father-son things.  I unfortunately, no longer have those chances to do the normal things any more.  I miss those days, I miss my buddy, and I miss just being a daddy to someone so very special.

The good news is that Vicki is doing better tonight but she needs a well deserved break, but do not fear, she will be back, in force, tomorrow to continue the story.  Thank you for coming to the blog, for reading, for continuing to come back, and for caring.... it means more than you know.

Monday, May 14, 2012

Monday, May 14, 2012

Tonight's picture was taken in May of 2009. Mattie was in the hallway of the pediatric units and having a physical therapy session. Physical therapy with Mattie was always entertaining, because rarely was he the only one doing the therapy. It took a team. In this picture, Linda (Mattie's Child Life Specialist) was behind me, and Anna (Mattie's physical therapist) was in front of us. Well, and as for me, I was Mattie's walker that day. If I let Mattie go, he would have fallen right to the floor. He couldn't support his own weight and most definitely couldn't walk without great support. Imagine how frustrating this had to be for a very active child, and how disillusioning this was for Peter and I who were caring for him. The care was NOT only physical, there were full blown psychological affects to the illness and being disabled from cancer.


Quote of the day: The moment a child is born a mother is born. She never existed before. The woman did; the mother did not. ~ Bhagwan Shree Rajneesh

I received this beautiful Mother's Day card from Margaret. Margaret was Mattie's first preschool teacher and our friend. I did not think Hallmark made a card for mothers who lost a child. But I can see I am wrong. Within this touching card, Margaret wrote the quote I used for tonight's blog. The quote is very telling, because I agree with its sentiments. I do not believe in a maternal instinct, and that women are born with the skills to be a good mother. Like a child, a mother also has to be born and better yet nurtured. One's role as a mom constantly changes! Initially with a new born, these changes may occur hour by hour, and then gradually week by week, month by month, and then perhaps year to year. Mothering skills, abilities, and strategies grow, change, and evolve. But what happens when the being you are nurturing dies? How can a mother continue to evolve and be? I am locked in a world in which I will always be a mother to a seven year old. I will never know what it is like to parent a pre-teen, teenager, or young adult. My questions are hard to answer, because from my perspective, as a mother I can't possibly continue developing as a mother, without Mattie's presence.

It was another full day of Foundation work. However, during the day, I met up with my friend Tina for lunch. Tina wanted to spend Mother's Day with me and she had invited me to share the day with her family yesterday. Today, Tina bestowed upon me several gifts for the occasion. One of the gifts were handmade butterfly cookies. I snapped a picture of this beauty before eating half of it! Another goodie she gave me was a scoop of ice cream from the Dairy Godmother. Each year, this ice cream store in Del Ray, VA, celebrates Mother's Day by having a special flavor called "Breakfast in Bed." Tina told me about this flavor last year, and when she did, it sounded beyond different. Because it is maple ice cream with pieces of waffle cone in it and get this.... BACON! Yes I said bacon. I did not think this combination could possibly work, but after tasting it today, I stand corrected. I ate the whole thing, which was a very needed perk to get through several of the tasks I had to do today. Any case, these symbolic gifts cheered me up today.

We are now down to days NO LONGER weeks until the Walk. I appreciate those of you who have registered, made contributions, and are spreading the word about the event. Know your efforts are greatly appreciated!

Sunday, May 13, 2012

Sunday, May 13, 2012

Tonight's picture was taken in May of 2009, around Mother's Day. Mattie worked with Jenny and Jessie (his art therapists) to create this present for me. Mattie actually used a potter's wheel to create the red vase, he glazed it, and then hand crafted the tissue paper flowers. I was asked to wait in Mattie's room that day, while Jenny and my mom wheeled Mattie into the room to surprise me with this gift. This gift was very special then, and it remains very special to me since it is the last mother's day gift I will ever receive from Mattie. This vase and its flowers remain in my living room, and each time I see them, it reminds me of this day captured in this photo. Thank goodness Mattie was so prolific and creative in the Hospital, because all his things are what I now turn to as reminders of his presence in my life.


Quote of the day: Making a decision to have a child--it's momentous. It is to decide forever to have your heart go walking around outside your body. ~ Elizabeth Stone

It is hard to imagine that this is the third Mother's Day I have spent without Mattie. It seems almost impossible to wrap my thoughts around this concept. In some ways I am so exhausted and focused on planning the Foundation's Walk, that I do not have the emotional energy to process Mother's Day. Two of my friends invited me out today, to share the day with them. But I decided instead to keep on working and to run chores with Peter. However, as I promised my readers earlier in the week, I want to share some pictures of my newly created Mattie wall with you. I have always wanted to create this wall, and Peter made this possible. He ordered the frames and all the photos as my Mother's Day present and for two weekends straight, we have been working on the layout of this composition.

Our staircase is very long, and I have always wanted to capture Mattie through his various life stages on this wall. However, one thing or another got in the way, and I never did it. I suppose I was too busy with life and raising Mattie, to worry about framing pictures. But now, pictures are all we have left.

It took us a while to figure out which picture went where, but I have to say I love our new Mattie Wall, and I will always remember we created this around Mother's Day of 2012.

It is hard to capture the true nature of this photo display, but I have to say seeing it in person, it makes a statement. It shows Mattie's energy, spirit, and whimsical nature.

In the midst of running chores, we did stop for a late lunch. There were a ton of people out celebrating Mother's Day, but somehow sitting outside at a restaurant did not make it seem as bad. My mind however is racing with a thousand thoughts for the Walk, so it is at times hard for me to eat or sit still. Around my neck is a Mother's Day present my parents sent me this weekend. In the heart of the necklace are Forget me Nots. At Mattie's funeral we gave out Forget me Not seeds to all our attendees. For the first year after Mattie's death, Forget me Nots were very important to us, since we planted many seeds ALL over town. In places that meant something to Mattie. So now I have this beautiful reminder around my neck.

I would like to end tonight's posting with five messages I received today. It is my hope that all our readers who are mothers had a beautiful day in which you felt the importance and appreciation of your role. The first message is from my Mom. She wrote, "Grandma would be proud of you if she were here to see your accomplishments in raising funds to help children stricken with cancer in memory of Mattie's life and his courage in facing an excruciatingly painful death which ended before it had ever begun! Your courage, determination, and vision guided you in the process of converting your deep emotional pain into a quest for hope and a better tomorrow for children who are suffering from cancer today like Mattie once did. In the last three years, you have developed into an awesome force using the power of your voice and its message to educate the general public about the urgency of your cause letting it ripple through innumerable hearts and minds to find a place of its own in the mainstream of society. From small waves of interest, you have over time created a tsunami of support to bring about change and enlightenment in childhood cancer treatment and care. This has come about only as the result of personal sacrifice and it's a choice that involves significant life changes in order to satisfy the obligations and responsibilities you have chosen to make for the children and their families that you represent through Mattie Miracle. You have opened many eyes to the urgency of your cause! Daddy and I always knew that you were tenacious, prone to vigorous debate, even as a child, when at odds with either of us and that thankfully you've taken the strong personality you were born with and put it to use serving a good cause. Have you ever stopped to wonder where Mattie's strong personality came from?? You have spoken of it often but I wonder if you acknowledged that was another trait the two of you had in common! Have a wonderful Mother's Day as you are and will always be a wonderful mother!!"

The second message if from Toni, Brandon's (Mattie's big buddy) mom. Toni wrote, "Just wanted to wish you a Happy Mother's day! Mattie would be so PROUD of his parents! Thank you for helping our kids!"

The third message is from my friend Heidi. Heidi wrote, "I am thinking of you today. You will always be a mother to your little precious angel Mattie and to all the other children you are helping with the Mattie Miracle Foundation. You are truly an inspiration to me for your kindness, empathy, charity and love for others. I am blessed to have you in my life I hope you have a beautiful day."

The fourth message is from one of the wonderful psycho-oncologists I have had the pleasure of getting to know from our March Symposium. Lori wrote, "I just wanted to let you know that I am thinking of you today. These Hallmark days can be so ridiculously difficult. I am so glad that your mom is still with you - she sure did an amazing job with you! I also hope you feel really pleased for ALL that you have accomplished this year alone for Mattie. You continue to inspire me daily. Looking forward to our future work and collaborations and know you deserve to feel exceptionally proud today."

The final message is from my friend, Tamra. Tamra wrote, "Today is the Sunday set aside for Mother's Day. Upon reflection of this day, I think about you and how our friendship would not have begun because of our children..you and I as Mothers. In the short but remarkable life of Mattie, we shared hope and love for your marvelous boy. As a mother, you have been so brave and generous in celebrating all children and find the reservoir to continue to give hope for children and their families who face uncertain journeys. You are a remarkable women and mother. In gratitude and love."