Saturday, November 19, 2011

Saturday, November 19, 2011

Tonight's picture was taken in August of 2008, during Mattie first week of chemotherapy. Right outside Mattie's pediatric intensive care unit (PICU)room, Linda set up a place for Mattie and his two friends (Charlotte and Claire) to paint. This was an extremely hard week for Mattie, because the acceptance that he had cancer and was going to be at the hospital for days and nights was an impossible adjustment. Linda (Mattie's childlife specialist) helped normalize life in the hospital for Mattie. She made him feel like a "normal" child, she respected his thoughts and feelings, and tried very hard to always empower his decisions. Prior to meeting Linda, if you told me that painting on the floor of a PICU was allowed, I would have laughed and not believed what I was hearing. However, with Linda, I learned almost anything was possible and achievable in a hospital setting! This is one of many examples that illustrate Linda's commitment to Mattie's care, happiness, and spirit.  

Quote of the day: One of the most beautiful compensations in life is that no man can help another without helping himself. ~ Ralph Waldo Emerson


At the Friends and Sponsors dinner we attended on Thursday night, Peter and I had the opportunity to interact with a woman who came up to hug and thank us for our contributions to the Hospital's childlife program. This woman's niece is a patient at Georgetown University Hospital, and has a significant illness that has basically left this teenager living in and out of hospitals since she was born. Based on respect for this young girl's privacy, I clearly won't go into details about her here since I do not have her family's permission. But suffice it to say, I was so moved by her aunt's comments, that I can't seem to get this young person off my mind. It is simply devastating to hear such a young person asking the adults in her life..... "why me? Why am I so ill and suffering, and what is my purpose in life?" All excellent questions, but in my opinion these existential questions SHOULD NOT be on the minds of our young children! Children should be able to be happy, free, and healthy, not weighed down by the harsh realities of a life threatening illness. In so many ways, dealing with such illnesses cause children to be much wiser than their years and as adult we can learn so much from them.

Needless to say, I have reached out to Linda today, and I will be contacting this girl's family soon because I have some ideas about how we can help to give her a "purpose" in life. Some times it is hard for me to hear about the complaints other parents have about their healthy children, when I know SO many children each day are fighting life and death battles. Battles which make them question whether it is worth being alive, and battles which deplete families of their own physical, emotional, and financial health.

Peter and I had a slow day today. However by midday, we decided to take a four mile walk to Clyde's in Gallery Place Chinatown. We know the general manager of that restaurant. In fact, he used to be the general manager of Mattie's favorite restaurant in Alexandria, but he was transferred to this DC location in the spring. We wanted to meet up with this wonderful individual to personally thank him for his generosity to the Mattie Miracle Cancer Foundation Walk in 2011 (since he is responsible for Clyde's food donation at the Walk and for connecting us with Rebecca, an executive chef for the chain, who did all the BBQ'ing the day of the Walk). As soon as we walked into the door of this DC restaurant, I felt as if I knew the person behind the desk. But I did not say anything to her, that is until she saw my name. Then she knew exactly who I was, because she too used to work at the Alexandria location and remembered seating my parents, Mattie, and I numerous times. She is now a manager at the DC location and she personally escorted us to a table and chatted with us for quite some time before and after lunch. We miss these two individuals at the other location, because for me, making personal connections is what keeps me coming back to a place.

Overall, we walked about 8 miles today and got to see how DC is already dressed up for the holidays. It seems to me we are by-passing Thanksgiving and moving right into Christmas. This is a little disconcerting to me.

I would like to end tonight's posting with two messages. The first message is from Gordon. Gordon is the man I wrote about on Thursday, who we met at the Friends and Sponsors dinner. Gordon's son, Nicholas, is the young man who dressed up as Scooby Doo and greeted Mattie in his hospital room back in August of 2008. After the awards dinner, I wrote to Gordon and sent him a picture of his son with Mattie! This was a picture Mattie absolutely LOVED! This was Gordon's response to my email, which he said he was happy for me to post and share with you. Gordon wrote, "I have been pondering how to reply to your generous comments. I also looked at the blog and, uh, I got emotional. The two of you went through every parent’s nightmare. I can’t pretend I know how you have the strength that you do – but I did pray last night and thank god for revealing your presence in our lives. If this makes sense, and I mean no disrespect, Mattie has come back into our lives through your words and your deeds and that is an awesome gift. I hope both of you know the impact you had on the evening and you take a moment to feel that which we all felt – your generous caring sharing of emotion. You clearly framed the reason for the Child Life Program and hit the nail on the head with Linda. If ever there was a call to action on such a significant issue – you have done just that. Your advocacy in the name of Mattie is inspiring and one of the most unselfish deeds I have ever witnessed. I know I will see you both soon. With the utmost respect."

The second message is from our friend, Junko. Junko wrote, "I just wanted to tell you that I was so touched by your speech at the reception - so much so that I had to close my door in my office this morning so that people will not see me crying in front of my computer. I was so happy to learn that you were surrounded by such wonderful people last night, too. Everyone looked great, but especially, you, Peter and Linda! I would like to join the rest of your friends and families to tell you how impressed and amazed I am for you and Peter to do what you guys are doing."

Friday, November 18, 2011

Friday, November 18, 2011

Tonight's picture was taken in August of 2008, during Mattie's first admission to Georgetown University Hospital. I remember making this model magic mask with Mattie in the hallway of the unit. We were in the hallway because when Mattie first entered Georgetown, there was NO childlife playroom. Fortunately within months of his admission, the Hospital received a generous donation and a much needed playroom was built. That playroom was a God sent and a refuge for us from the confines of Mattie's PICU room. I loved this mask that Mattie made, and I still have it today on display in our kitchen.

Quote of the day: The body has a remarkable ability to displace pain. First it's in the abstract, then it's in your skin as a feeling, before it moves into your mind as a story, but sooner or later the pain ends up in your heart. And that's where it stays. ~ Emily Rapp

My friend Charlie sent me this quote and I absolutely love it! In a nutshell it summarizes the impact of Mattie's grief for me. There are times when I long for the "displaced pain" state which I was in during 2009, right after Mattie died. Being emotionally numb is naturally not healthy but in a way it protected me and kept me somewhat safe. As time wore on though, grief has become both physical and emotional. Almost as if it travels around the body. I do believe my grief settled in certain parts of my body, which is why early on in the grief process I got repeated sinus infections and fevers. However, the blog enables grief to become a story, and as such, telling the story brings the pain directly to my heart..... and there it lies.

Peter and I are both physically and emotionally drained from yesterday. Certainly in a positive way. We will not be forgetting that awards ceremony any time soon and I have appreciated the lovely comments and feedback we have received today from many people! In fact, my friend Tina who was at the awards dinner with us last night sent me an email this morning acknowledging how memorable the evening was and how Georgetown administrators went out of their way to make the night special for Peter and I and all our guests. The wording Tina used, was we were "wined and dined" and she was correct. It was an elegant evening, that flowed well, and I am so happy to hear that our friends felt appreciated.

I had the opportunity to have lunch with Christine today. Christine and her husband attended the awards dinner with us last night and we chatted about that experience as well as upcoming Foundation activities. Christine is the kind of friend who always asks me.... how can I help? Music to my ears, because it is thanks to friends and volunteers like Christine, the Foundation is able to host large events such as the annual walk.

I would like to end tonight's posting with two messages. The first message is from Karen's mom, Naomi. Naomi wrote, "Look at what the two of you have accomplished! You have gone out in the world and made a difference. What I love about your intelligent, forceful and brave work is that you have given others a sense of purpose as they seek to help you put your Foundation on the map. A tribute to you! A tribute to Mattie. You make me want to cheer and you move me to tears all at the same time."

The second message is from my friend, Susan. Susan wrote, "First congratulations on your award, but also on how you continue to touch people in Mattie's honor and memory! I know that this is not how you wanted to find "your calling," but it is wonderful how through you Mattie still is impacting people. In a way it makes me think of the Beatles song Imagine... Imagine if you and Peter hadn't chosen the path that you did, to set out to make a difference for others through all your pain. So many people would remain untouched. Very powerful indeed."

Thursday, November 17, 2011

Thursday, November 17, 2011

Tonight's picture was taken in the Winter of 2006 in Mattie's first preschool class. Though Mattie's eyes were closed in this picture, it captures two things that I noticed right away. One, it illustrates the dynamic duo working and creating together. Mattie and his buddy Zachary were inseparable in preschool, both inside and outside the classroom. In addition, the second aspect of this picture was that Mattie was using the stapler. Mattie was a big gadget guy and it doesn't surprise me in the least that if he was given the choice between markers and a stapler, he would select the stapler.


Quote of the day: The greatest challenge of the day is: how to bring about a revolution of the heart. ~ Dorothy Day

Today was an absolute whirlwind that far exceeded our expectations and imagination. For us, I would say today was a good day! We haven't had many of these days since Mattie died, but even in our grief ridden state, we can't help but see the impact we are making. It seemed like one Mattie Miracle achievement after another day. Mattie would have been proud and pleased!!!

Our morning began by attending the "Creativity and Innovation" business school class at Georgetown University. As my avid readers know, this business class adopted Mattie Miracle as their service learning project. We met with these undergraduate students for the first time on the second anniversary of Mattie's death, September 8, 2011. During that class we introduced the students to Mattie's life, discussed his battle with childhood cancer, and then gave them an overview of the Foundation. Over these past two months, the students have been working on all sorts of strategies and ideas to help Mattie Miracle grow more effectively and productively. The purpose of today's class was for each of the five student groups to present their ideas on PowerPoint slides and then to seek our feedback and next steps.

The groups all presented innovative ideas, some of which we can easily adopt NOW! In addition, the students have done some of the leg work for us and have helped us connect to resources on Georgetown's campus and within the community! Peter and I very much enjoyed our time with this class and felt it was stimulating to hear their ideas and for us to pose questions! Later today, Dr. Bob Bies, the professor of the class wrote this to us....."you meant so much to my students. They got it.... they got Mattie!" That is music to my ears and I was touched to see a few of the students wearing their Mattie Miracle pins that we gave them back in September.

Bob ended his class today with the Dorothy Day quote that is listed above. I would say Mattie Miracle caused a revolution of the heart in several places today. One was with these business school students, but the second was on Capitol Hill, and the third was at Georgetown University Hospital's Friends and Sponsors dinner held at the Four Seasons Hotel in Georgetown. I could clearly see we evoked major changes in people today, whether it was through inspiring them to pursue an idea or literally feeling an emotion and crying.

Before the class ended we took a picture of this dynamic, bright, and inspiring group of students. Bob is on the far left and Peter is on the right.

For my readers who want to hear the student presentations to the Foundation, Bob videotaped them and sent us the link below. I wish I had access to such technology for all the things Mattie Miracle participates in.
Presentation Details:
Title: Classroom Presentation (140)_001
Date: Thursday, November 17, 2011
Time: 9:30 AM (UTC-05:00) Eastern Time (US & Canada)
Duration: 1:15:00
Link: http://msb.mediasite.com/mediasite/Viewer/?peid=1c0b86f9cb9541ffac5ca10e795d79451d


After Bob's class, we had a meeting on Capitol Hill with Rep. McCaul's Legislative Aide, Andy. I am very fond of Andy, and one of my gifts or curses is I can usually read people right away. I can tell whether you are listening to me and I can especially tell whether you are aligned with us on our Mattie Miracle mission. When I met Andy months ago, I sensed he was going to be an asset to our cause. Stay tuned for more on this front, because Mattie Miracle will be working with Rep. McCaul to plan an exciting and first ever event of its kind on Capitol Hill this spring.

In the midst of this good day, I was deeply troubled about a particular issue which I am not planning on discussing here. I can get easily upset and angry over certain things that tie or connect to Mattie's memory. If I feel that Mattie isn't being remembered appropriately or kindly by those in his life, I get frustrated. I am lucky however, because when I need someone to bounce feelings off of, I can send an email to Karen. In typical Karen fashion, she got why I was upset immediately, normalized the feelings, and helped me understand why there was a disconnect between myself and others in my life. Her email made a big difference to me.

Tonight, we attended Georgetown University Hospital's Friends and Sponsors dinner. Peter and I were being honored with a special recognition award. We found out last weekend that we would be given a table at the event and that our board or friends were welcomed to attend. When I quickly realized that our board members weren't able to attend, I began reaching out to our close friends, who also happen to be Mattie Miracle supporters. I did not give them much advanced notice, but one by one, each of them rearranged their schedules, found childcare, and came tonight to support us. If that is not true friendship, I am not sure what is. We had a lovely time together, and having their support, helped make a very challenging speech a bit easier to deliver.

Before the dinner started, we snapped some pictures of our friends and supporters. I entitle this picture....The girls! Pictured in the front row is Tina and Margaret, and the second row is Ellen, Vicki, and Christine.

Here is a picture of our entire table of friends. In the front row is Ellen, Tina, Vicki, Margaret, and Christine. In the second row is Jeff, JD, Peter, Brian, and James.

Pictured with us is Linda Kim, Mattie's Childlife Specialist! One of my main objectives tonight was to make Linda feel special and for people in the audience to acknowledge her amazing contributions to children and their families at Georgetown.

At the end of the evening Linda gave us flowers and the Hospital gave us this Tiffany engraved bowl! A bowl I will cherish.

Tonight's event was an incredible experience. To help my readers feel like you were there, I am going to share with you how we were introduced, then you can read Peter's speech, followed by mine.

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Introduction of Mattie Miracle from Dr. David Nelson, Head of Georgetown University Hospital Pediatrics

We are honored to recognize the contribution that has been made by the first foundation that we are acknowledging this evening with the 2011 Special Recognition Award.  

The Mattie Miracle Cancer Foundation was founded in the loving memory of Matthew J. Brown, or as he was better known to his friends and family – "Mattie." 

The Mattie Miracle Cancer Foundation is dedicated to increasing awareness for Osteosarcoma and other pediatric cancers, education, advocacy, research and supporting the psychosocial needs of children and families living with pediatric cancer.

Although much of their work involves increasing awareness, education and advocacy for pediatric cancers…the Mattie Miracle Foundation also makes significant contributions to support the psychosocial care of children and families facing cancer. Because of their generosity and support, we have a new Child Life Specialist position here at the Hospital to assist Linda Kim and her team…particularly to support, educate and comfort children and families during procedures and scans. They have also provided support for the PAB Family Snack Cart that provides – at no charge - snacks for families who have children admitted to the Georgetown…along with books, toys and other gifts for children that are contributed on a regular basis. 

The Mattie Miracle Cancer Foundation intends to make a difference…which they do every day. In recognition of that difference, we are honored to present the 2011 Special Recognition Award to the Mattie Miracle Foundation…it is my pleasure to introduce Mattie’s parents and the co-founders of the Mattie Miracle Cancer Foundation - Peter Brown and Victoria Sardi-Brown. 

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Peter's speech!

First, I want to thank Georgetown Pediatrics for this award.  It’s amazing and a little overwhelming, to be getting an award from an organization that treated us so well as a family, for helping them to continue to do the incredible job that they do for families.

Second, I want to thank our friends table, down in front here, whom have become our family. They have been with us through thick and thin, and they continue to be there for us, and without them, we could not do the things we do today.

I want to start with a quote by Ruth Smeltzer:  “You have not lived a perfect day, even though you have earned your Living, unless you have done something for someone, who will never be able to repay you.”  I find this a great motto to live by…

I am a co-founder of the Mattie Miracle Cancer Foundation, a national 501(C)(3) non-profit, that my wife Vicki and I created in the memory of our son, Mattie.   

Mattie, our only child, was diagnosed with Osteosarcoma, a type of bone cancer, in July 2008, and after a 15 month battle here at Georgetown, he died on September 8, 2009 at the tender age of seven and a half.

Two months after Mattie’s death, we founded the Mattie Miracle Cancer Foundation, because inspite of the excellent care we received here at Georgetown, we learned ourselves and from other families that the psychological, emotional and social aspects of a child and their families dealing with cancer, was just not getting the proper attention that it should by the overall medical profession.

So, we did something about it, and created the foundation, whose mission is to address the psychosocial needs of children and families with cancer.

In reality, inspite of the all the medical treatments that Mattie endured, the chemotherapies, the radiation, the surgeries, the drugs, the experimentals, and anti-nauseas, that the medicine is really only just a small part of what really goes on in treatment and survival. 

In fact, a vast minority of the time was actually spent on medical treatment, whereas the vast majority of the time was spent on all the time in between those treatments….

This only underscores the importance of recognizing that the psychological and emotional aspects of childhood cancer are just as important, if not more important proportionately, than the medical treatments themselves. 

Because remember: even if we had a 100% cure rate, there would still be devastating psychological and emotional impacts on the children and families fighting childhood cancer.

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Vicki's Speech

*** Note to my readers (I did not say this!): Until last night, I had NO idea what I was going to say at this awards ceremony. I ran into a complete block, mainly because for me talking about Linda is very emotionally laden. I wanted whatever I said to be powerful and to convey her unique, special, and outstanding skills, not to mention her compassion as a person. Finally last night I was able to move past my writer's block and began to think clearly. I copied my speech below, but you should know I wasn't reading it, I was talking from the heart (and had the speech to turn to if I got flustered). While I was talking, you could hear a pin drop in the room, that is how quiet it became and when we were done, we were the only award recipients to get a standing ovation. It was a powerful moment, which I wish we had recorded.

Sometimes a person comes into your life and transforms it by giving you hope under life's worst circumstances. For us, Linda Kim is that unique and rare ray of hope. Linda steadfastly helped us throughout Mattie's cancer journey, especially during the times in which Peter so aptly referred to as "the majority of time in between treatments." It is hard for me to briefly talk about a person who we are so grateful to and admire professionally. But I will certainly try. I must admit that when I entered Georgetown Hospital in July of 2008, I had no idea what a childlife specialist was or even did. Like most six year olds who are diagnosed with cancer, Mattie was frightened, scared, and upset about being isolated from his friends. In addition, we had no local family to support us through this crisis. Mattie's art therapist, Jenny, felt given Mattie's significant issues, that we would benefit from meeting her colleague Linda Kim.

The idea of allowing one more person into our life during those first weeks after diagnosis, did not appeal to me. Mainly because we were being inundated with so many professionals and specialists that I did not think I could manage another one. However, we did decide to meet Linda one day in clinic. When Linda meets with any child and his/her family, she never comes empty handed. In tow, she had a cart filled with toys, books, and other things to stimulate, engage, and connect to Mattie. When Mattie saw Linda (for the first time) and her cart enter the clinic, his face began to light up. It was at that point I realized we needed this medical Mary Poppins on our team.

However, play is just one component of Linda's job. It doesn't take long to see that Linda has outstanding skills at assessing the needs of her patients and their families and finding a way to meet those needs. For me, Linda became my Mary Poppins, my Florence Nightingale, and my Mother Teresa, all rolled up in one.

After that first encounter, Linda became an integral part of our world, who we turned to in both the good times and the too numerous to mention bad moments. Linda connected, understood, and appreciated Mattie, but she also connected with me. Mattie's treatment left him physically disabled and psychologically and emotionally fragile. In many ways, Peter and I were not far behind. I recall that one day when Mattie was inpatient, he had an MRI scheduled. Linda accompanied us to the day surgery center to await his sedation for the scan. However, I was emotionally wiped out and also not feeling well that day. I was congested and my left ear was completely filled with fluid so I could barely hear out of it. While in the day surgery area, I collapsed into a chair with a blanket around me and closed my eyes. I had to unplug from the situation, and fortunately I could do that since Linda was there to play and talk with Mattie. While I had my eyes closed however, something caught my attention. I was hearing the joy, laughter, and happiness of not Mattie with cancer, but what Mattie sounded like before he was diagnosed. The next thing I know, I felt as if something miraculous was happening. My ear popped and I began to hear clearly again. I was so excited that I said, "Linda, I can hear." I am telling you this story because I want you to know I have many of them, this wasn't an isolated incident. That day Linda gave me the respite I needed to regroup and feel better, but she also gave me hope, that despite Mattie's body being ravaged with cancer, his spirit and personality were untouched and very much intact.

Peter and I had the opportunity to interact with other childlife specialists at different hospitals during Mattie's extensive treatment. I can assure you that not all childlife specialists are created equal. Georgetown has a very rare gem in Linda Kim. She gives 110 percent of herself to her patients and families and I can attest to the fact that it is due to her, Mattie always looked forward to coming back to the hospital. Not for his treatments, but to spend time with his friend Linda who understood him.

We couldn't imagine going through the cancer journey without Linda, and by establishing the Mattie Miracle Cancer Foundation Childlife Program Support Fund, this ensures that every child at Georgetown has access to Linda and her fine team.

Awards mean different things to different people. I would like to think Mattie is with us tonight in spirit and looking down on us and saying... "Mom and Dad you did good, I am happy you are supporting my buddy Linda. A person I trusted and loved." We want to thank Georgetown Hospital for 15 months of outstanding care and for giving us the opportunity to remember our son in this special way.

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After the event was over, I received this lovey text message from my friend Tina. I really appreciated her observations and feelings! Tina wrote, "You did great tonight! Both of you. Such a moving speech. It was an honor to be with you! Could you feel the vibe in the room when you were done? I'm not as used to it as you. Such admiration. You move people. Mattie would be proud."

After we spoke, many people came up to talk with us, hug us, and some even cried with us. One of the people who approached me did not know that Mattie died and was visibly upset to hear this in our speeches. Why? Because this man's son, Nicholas, played Scooby Doo in this picture (we did not know this, we learned this tonight). This picture was taken in August of 2008, during Mattie's first chemotherapy treatment. Nicholas' dad told me tonight that people were cautioned not to go into Mattie's room that week, because things were frankly quite volatile. However, Mattie loved Scooby Doo (stuffed animals on the bed should be a good indicator), and when he saw this huge character, Mattie immediately invited Nicholas into his room. Apparently this encounter has remained with Nicholas (who is only 19 years old now) even today, and his dad tells me that Mattie transformed his son's life. It was one powerful story after another tonight and was a real reality check for us about how Mattie touched people's lives and what the Foundation is doing to help.

Wednesday, November 16, 2011

Wednesday, November 16, 2011

Tonight's picture was taken in the Fall of 2005 in Mattie's preschool class. The irony about this preschool class was that in addition to the children forming friendships, the parents in this class also became very close with one another. As you can see there are three other children in this picture and now that it is six years later from when this photo was taken, I still see these three other moms and they support the Foundation in their own ways. That to me speaks volumes about the school and the nature of that classroom. The funny part about all of this is a year before Mattie entered preschool, if you would have asked him to play with shaving cream, he would have been horrified. He would have had a tantrum about the texture, the feeling, and the whole experience. Thanks to Mattie's amazing occupational therapist, he learned to be open to these kind of activities and actually enjoyed them! Mattie was a fighter right from the beginning. He did not only contend with cancer, but he dealt with a significant sensory integration issue. I stand behind early interventions, finding the right professional to work with, and of course the advocacy and devotion of time that only a parent can provide a child. Most likely if I did not tell you about Mattie's struggles, you would have just looked at this picture and seen a happy kid playing with shaving cream. Now hopefully you can also see a happy kid who overcame a great deal to find the joy of playing with shaving cream!  

Quote of the day: There are two ways of exerting one's strength; one is pushing down, and the other is pulling up. ~ Booker T. Washington

My friend Charlie sent me this quote today and to me it speaks directly about grief. Grief can do one of two things to a person. It can either make you angry, bitter, and push back at people and life, or it can stir something deep within that inspires you to try to climb up and out of the abyss of sadness. With that said however, I do think the "pushing down" and "pulling up" forces are both present and experienced for me. There are days that I have the energy, hope, and where with all to be courageous and integrate into the world, and then there are some days when everything is overwhelming and I will either push away or at those closest to me.

I had the opportunity today to visit with my friend Leslie. Leslie lives in Maryland and though that is our neighboring state, we actually do not live around the corner from each other. However, thanks to the power of the Internet, we are able to stay connected. Leslie was my freshman year college roommate. The first year of college is always a major adjustment and I imagine for most people it is a time one doesn't forget. I witnessed many mismatched roommates during my first year of college, people with different moral values, organizational skills, and responsibility levels. Fortunately for Leslie and I, at the core we had similar viewpoints and values which helped us both adjust to being far away from home. Ironically over our four years at Union College, there were many people who entered our social circle. Nonetheless, despite that, our friendship remained throughout our time on campus. As we were talking today, I realized that for the most part many of the people we thought were our friends at college drifted away from us, and yet our friendship remains. I was Leslie's maid of honor at her wedding, and like myself, she married a man she met in college. College seems like a magical time, and it is a time in which we meet and establish friends independent of our family. I know at that tender age, when I developed those friendships, I thought I would have them for the rest of my life. Some people are lucky if they have the longevity of college friendships, but from my experiences geographical distance and life separate people apart.

Leslie is an avid blog reader and though we haven't physically seen each other in a while, she felt in a way that she has seen me. She told me she starts each of her days with the blog and that some days it makes her cry and other days she sits and wonders how on earth we do it? How do we get up and continue living and doing? Excellent question. Though I did not mention this, Leslie understood and verbalized to me that writing the blog each day takes discipline and a certain level of creativity. Absolutely, I couldn't have said it better. She told me how moving our story is and how it should be a book, and that I could do this. Part of my issue with writing a book is self confidence and also at times I get stymied by the fact that the book symbolizes Mattie and therefore it has to be GOOD.

We spent three hours catching up, chatting about all sorts of things, and having a lovely lunch. I introduced Leslie to Seasons 52, one of my favorite restaurant chains. A chain that began in Florida and I recall going to it with my parents and Mattie. It reminds me of my times with Mattie each time I go to the restaurant. Today was a day about reconnecting and the funny part about us, is we picked up right from when we last saw each other.

Thursday is a BIG day for Peter and I. We are starting the day with the Georgetown University Business school class who adopted us as their community service project. We will spend the entire class hearing student presentations about the Foundation and then we will be providing them with feedback. After class we will be off to Capitol Hill to meet with staffers and then later that evening we will be attending a reception at the Four Seasons in which Georgetown University Hospital will be presenting us with a special recognition award. It will be a whirlwind of a day!

I would like to end tonight's posting with two messages. The first message is from my friend and colleague, Nancy. Nancy wrote, "Reading yesterday's blog from picture to the end was so rewarding. Personally, when I write from my heart, I am amazed how Vicki fits my words to wrap up hers. We are a good duo. I believe that your connectedness has rub off and is another example of why people are wanting to help the Mattie Miracle Cancer Foundation. I was so excited to read of your meeting and contacts. Wow, I wish I lived near DC and could participate in the Whole Foods Day. I did think of one and want to make it a surprise, so watch the mail. In addition, reading of the ripples that are taking place signifies the importance of the work that you are accomplishing with the Foundation and the devotion that you feel for Mattie. Have a wonderful day. This is only the beginning of other partnerships that will emerge to support and comfort the families, short of wiping out this horrible disease. Mattie remains your inspiration."

The second message is from our friend Tad (who happens to be Junko's husband). Tad wrote, Congrats on Whole Foods day at the store in Alexandria, for the Mattie Miracle Cancer Foundation! That is awesome. The connections manifest in marvelous ways. That said, I sense many angels, and one fearless lead angel, watching out for you."

Tuesday, November 15, 2011

Tuesday, November 15, 2011 -- Mattie died 114 weeks ago today.

Tonight's picture was taken in the Fall of 2005. Margaret, Mattie's first preschool teacher, snapped this picture of Mattie. In fact, I can still recall seeing this picture for the first time and being amazed that Mattie held this carving tool and was chopping away at the pumpkin. I must admit, I would have been nervous about giving Mattie any sort of tool to use back then, but what I learned early on was Mattie had very good fine motor skills. Which is why, with supervision, as a preschooler he used a screwdriver, a hammer, and a hot glue gun. In fact, I learned how to use a hot glue gun from Mattie, it wasn't the other way around. Mattie loved pumpkins and I think Margaret captured him so well in the moment.


Quote of the day: I believe that imagination is stronger than knowledge - myth is more potent than history - dreams are more powerful than facts - hope always triumphs over experience - laughter is the cure for grief - love is stronger than death. ~ Robert Fulghum


I have come to one conclusion in life. Things happen because of who you know and the relationships you develop over time. Each day, I remain focused and committed to telling Mattie's story and our experiences through the process of grief. It is through our stories that the mission and focus of Mattie Miracle become transparent to others and our community. One of Peter's colleagues at work has a fiance who works for a company called Perfect Foods bar (http://www.perfectfoodsbar.com/). Will approached us about the opportunity to help sponsor nutritious snacks for the Hospital family snack cart that we are sponsoring at Georgetown University Hospital. However, through Will's connections, he introduced us to Brittany, the health education specialist at Whole Foods in Alexandria, VA. Today I had the opportunity to meet Will and Brittany in person.

We had a two hour meeting together in which we shared personal stories, got to know one another, and then I got to hear about what both of these professionals could do to help Mattie Miracle. In fact, at one point, Will said, "yes we can do that, but what else..." I frankly haven't met that many people like Will and Brittany, who want to brainstorm with me, are so giving of their time and expertise, and want to promote us and our cause. They genuinely want to make a difference, and as the ideas were flying, I realized quickly we needed another meeting to truly dig deeper into their suggestions.

But here is the exciting news. Mattie Miracle is going to host a fundraiser at Whole Foods in Alexandria, VA. Whole Foods holds a 5% Day fundraiser where they select a non-profit partner and on the selected event date, 5% of the day’s sales are donated directly to the non-profit. These 5% Day fundraisers are held four times a year. I learned that getting selected is a very competitive process and thanks to Will, we were brought to Brittany's attention right away. We are SO grateful for this opportunity and will be getting to work on marketing and promoting this event. But for my local readers, mark your calendar for Wednesday, January 25, 2012. This will be a Mattie Miracle day at Whole Foods in Alexandria, and we encourage you to shop and eat at the store that day. As you know our fundraisers help generate money to support the psychosocial needs and services of children and their families battling cancer. Please tell your friends about January 25. Peter and I will be at Whole Foods that entire day interacting with the public, and we are working on materials and give aways as I am writing tonight's blog!

I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend. Kristen wrote, "Thinking of you on this Tuesday and everyday!"

The final message is from my friend and colleague. Nancy wrote, "As today marks another week without Mattie, the blog features many interesting observations. One is that today I imagine the count will be much higher as many of the faithful readers want to support you especially on this day by clicking on and reading about your day. Secondly, the work that the Foundation is getting involved in reflects the enormity of its scope and relevance. Going for bulk mail status can be a challenge and although it took a bit for you to get all the ins and outs of the procedure, you are conscious of the cost factor to your organization. Thirdly, I was so glad to read of Peter's lunch. It is important that we understand a loved one's motivation for 'feeling their feelings, their way' and another to show them that they still deserve to be honored on their ' special' day. Fourth, the class created a very memorable event for the parents currently going through the turmoil of taking care of their child and maintaining their own stamina. Kudos to them and to Prof. Bob for choosing the Foundation as a project focus for this semester. This is a fabulous way to get fresh ideas to support the families of the hospital.  I wasn't surprised to read that your grief is different. The longer that you are without Mattie, the more real it is not having him with you. I really liked what Charlie said yesterday, in response to your 'forgetting' Mattie's picture. Knowing that others really understand how you feel and to visibly see that Mattie has impacted so many lives is a reminder that you are not alone. I say this because you mentioned not feeling part of events sometimes. As you know when a person experiences a loss so deep as you both have, the greatest challenge is to go on living. I'm glad that you still have times when you show your emotions 'in the moment.' It is a sign of your humanity and depth of your loss. It is your genuineness coming through."

Monday, November 14, 2011

Monday, November 14, 2011

Tonight's picture was taken in November of 2005, during Mattie's first semester of preschool. Mattie was in Margaret's class that year, and though Margaret and I did not know each other well at that point, she seemed to understand that I was a picture person. So at the end of that year, she gave me hundreds of photos of Mattie's class that she had taken over the year. This is one of Margaret's photos, and I am so glad I have all of them now. To me this photo captures Mattie in his element. Mattie was painting with Zachary, his closest buddy. However, Mattie was always curious and the photo leaves it open to the viewer to figure out what Mattie was staring at and what caught his attention while painting. Mattie and Zachary formed an instant bond during the first week of preschool, and just like any great pair, you never found one without the other. They had a special bond and friendship, and I recall one of Mattie's preschool teachers once telling me that Mattie struck her as a kid that could make friends with a lot of different people, but only chooses to become close to one or two kids. I would say that was a fair assessment of Mattie.

Quote of the day: You have not lived a perfect day, even though you have earned your money, unless you have done something for someone who will never be able to repay you. ~ Ruth Smeltzer

Yesterday's remembrance service put me in a funk and I most likely would have continued feeling that way today if I wasn't planning on going out to lunch. But it wasn't just going out to lunch, it was a lunch to celebrate Peter's birthday. Ann and Alison, our Team Mattie leaders, wanted to take Peter out and I felt compelled to support that because despite not wanting to celebrate his birthday, Peter deserves the opportunity to feel cared about. At lunch we talked about Foundation goals and activities and as lunch was coming to an end, I just felt like I was on emotional overload. When that happens, it is easy to see, because I begin crying and am unable to really think clearly. In so many ways, grieving in 2009, right after Mattie's death, was easier for me, because I was so numb and felt less. Now as time has continued, the level of support I get is much less, mainly because it "looks" like I am doing so well, and function and accomplish things. However, in all reality the grief is much different from 2009, for me, I am much more in tune with the depths of the loss than I was two years ago. So the opportunity to be able to talk and cry about this loss are very needed.

After lunch, I delved into a whole new world. I visited the bulk mail center of Arlington, VA. Why? Because Peter and I are trying to apply and qualify for non-profit postage status. What a process this is! I met with one of the postal workers today who I absolutely LOVED. She was very knowledgeable and answered all my questions, especially when I had her repeat herself several times because I did not get what on earth she was talking about at first. The application process itself is daunting, but Peter filled that out, and we jumped through the first hoop. We are now onto the next hoop. But non-profit postage is NO easy task to contend with. As a non-profit (assuming we get approved by the post office), mailing an item becomes more complex because I will not be able to mail Foundation items just anywhere. Instead, all items must go through this bulk mail center, and when I do this, I must presort the mail for the post office. So all envelopes must be sorted by zip code and then delivered in post office approved sacks to the bulk mail center. I tell you the hurdles one has to jump through could make your head spin, especially when I know that I will be the one primarily doing the stuffing, addressing, and sorting of envelopes. Seeing the whole picture was overwhelming for me, so I am taking it one step at a time and remaining focused on the fact that in the end this will save the Foundation money.

This evening, Peter and I headed back to Georgetown University Hospital. One of the business student groups, from the class that adopted us as their community service project, brainstormed an event for inpatient families. They were able to get Chipotle to donate food to host a dinner in the parent lounge of the pediatric unit at the Hospital. It was a wonderful idea since most parents are unable to leave the unit while caring for their sick child. Many parents came to the event tonight, and fortunately I am familiar with the nature of the floor and caring for a sick child. Peter and I know, parents can't really spend much time in the lounge to socialize with us and sit and eat. They are there to grab food and go back to their child's room. Peter, myself, and our board member and friend, Tamra greeted many families and so many of them were grateful for the food and for thinking about them. So in line with tonight's quote I would say we all had a perfect day. We provided dinner and connected with parents who will "never be able to repay" us. According to Smeltzer's quote this level of selflessness is what helps to constitute a perfect day. I am not sure about that, but I am sure that we made a small impact tonight on several families.

I thoroughly enjoyed interacting with the Georgetown student group who planned this dinner. They are clearly bright and energetic. While I was roaming around the units and connecting with nurses (I saw Tricia and Miki!!!) and staff, Peter sat and chatted with the students in the parent lounge. For Peter this was a really good thing! I could sense his heightened level of energy from this interaction and to some extent it brought back the dynamic he had with Mattie. After all, when Peter was raising Mattie, Mattie looked to Peter for advice, guidance, and direction. In many ways, these young minds were doing the same thing with Peter. Not as a father, but as an accomplished business professional, who graduated from their Alma mater. In some ways, as Peter was interacting with these young adults, he was imagining what Mattie would have been like if he was lucky enough to live into his twenties. Though I did not experience that dynamic this evening, I understood the energy Peter got from this interaction, because this is the life and energy I always got from my students. That is the beauty of teaching, and in many ways it is addictive, because you are shaping and stimulating a mind, and in the process, students become connected to you and value your opinion. It is human nature to crave that dynamic, but I think it is even more NEEDED, after you have lost your role as a parent.

Linda (Mattie's childlife specialist) was with us tonight and she snapped a picture of us with four of the Georgetown Students. The other six had to leave for class, but I have to tell you, I was very impressed with these individuals and several of them are brainstorming other ideas for us, even though their semester and assignments are coming to an end. Notice that behind us is a Georgetown Pediatrics welcome sign. This is the sign that Mattie put his footprint on. You may see the red footprint at the top right of the picture. Mattie left his mark on Georgetown, figuratively and literally.

I do need to comment though once again about the Boston connection! People instantly relate to Peter because of this geographic commonality. One of the students tonight we learned was from Boston, one of Mattie's fantastic PICU nurses is from Boston, and our new childlife specialist who we are helping to fund is from Boston. Don't you know they all chatted about the Red Sox and the Patriots!!! I continue to be amazed by the power of Boston to unite people!

In the midst of all of this today, I received an amazing email from a parent at Mattie's school. Anne's daughter, Elizabeth, and Mattie were in the same kindergarten classroom. In fact, Elizabeth and Mattie sat at the same work group table in the classroom. As Mattie's kindergarten year progressed, I noticed that he became connected to Elizabeth and they became buddies. Anne wanted me to know that Elizabeth still thinks about Mattie. I think Elizabeth's kind and loving gesture speaks volumes about the level of feelings children have for one another and how on some level they do process death and try to understand it. Elizabeth's balloon story made me pause today and made me also see that in his friend's eyes he hasn't been forgotten. Anne wrote, "Last Wednesday was the school's pancake supper. We went. The kids got balloons and brought them home. In the car, Elizabeth announced that she wanted to let her balloon go. I agreed. She then said she wanted to write a note on it first. She took her red balloon (yes it was red) and with a Sharpie marker wrote: "Mattie, I miss you. Love Elizabeth." She let the balloon go and we watched it until we could not see it anymore. I apologize for not taking a picture, but I was trying to hide my tears and just did not think about it. She asked me if I thought Mattie got her balloon. I told her that I don't think he could actually hold the balloon, but he sees it and knows she is thinking of him and missing him."

I would like to end tonight's posting with a message from my friend Charlie. Charlie read the blog last night and picked up immediately that I was very upset that I forgot to bring a picture of Mattie to the remembrance service on Sunday. She had some insights on this that were very meaningful and got me to think and reflect on them. Charlie wrote, "I just finished yesterday's blog posting and although I haven't written back to the blog in a while I feel it is time to do so. I see something symbolic in the "forgetting" of the picture. Although you are a "picture person" you know that there is so much more to a person than can be expressed in a picture. Somehow it seems to me that Mattie's spirit is now even more ensconced in your heart in a way that pictures can support but not replace. I think this was a message from Mattie to you, that whether or not you hold something of his where you can see it, you always hold something of his love and spirit within you. I also think it was helpful to know that you are not the only one keeping mementos of Mattie; that his picture and a creation of his reside in the hospital are also important to remember. As always, I hold you gently in my thoughts."

Sunday, November 13, 2011

Sunday, November 13, 2011

Tonight's picture was taken in November of 2008. In this picture Mattie had just presented Peter with a birthday gift. Since today is Peter's birthday, I wanted to post a picture that captured Mattie celebrating this day. Despite the fact that Mattie was in the hospital, he created a cake for Peter made out of model magic. I remember that Mattie worked on this project with Jenny, Jessie, and Linda (Mattie's art therapists and Childlife Specialist). I wasn't involved in the process because I think he wanted us both to be surprised. Peter still has this cake, it sits on his dresser in our bedroom. It is very hard to celebrate holidays and special occasions without Mattie, which is why Peter elected not to do anything today on his birthday.


Quote of the day: In deep sadness there is no place for sentimentality. ~ William S. Burroughs


Each Fall, Georgetown University Hospital hosts a Remembrance Service for all the children who have died at the facility. This is the third year we have attended this service, and this year, unlike the past two years, we left asking ourselves.... would we do this again next year? As the name implies there is a religious component to the service, but it is more than that because during the event, each of us light a candle for the child we lost, we hear stories and reflections from fellow parents, as well as hospital personnel. Each time we return to this service, we see various staff members who knew us and cared for Mattie. So in a way, this event gives us an opportunity to reconnect with our hospital family.

As we were heading to the hospital to attend the service, I realized I walked out of the house without my framed picture of Mattie. Parents are asked to bring pictures of their child to the ceremony, and for the past two years, I had mine in tow. Today, by the time I remembered, it was too late. As I was sitting in the chapel, I was feeling absolutely horrible for forgetting, and this was making me feel very guilty. As if I disrespected Mattie. It is the little things that can set me off. Denise, Mattie's social worker, was in attendance and she came up to me before the ceremony started and asked if I brought a picture of Mattie because she did not see one on the table. Denise knows I am a picture person, and snap pictures of just about everything, so the fact that there wasn't a picture of Mattie on the table meant something. I am glad she asked me, because when I told her I forgot one, she went to her office and brought her framed picture of Mattie (the one I love with him holding a pumpkin), along with a rock she has with Mattie's name painted on it. She placed both items on the chapel display table. I was deeply touched and that kind and beautiful gesture won't be forgotten.

In the past I have always gotten something out of listening to the readings or the homily delivered by Mattie's chaplain at the hospital. However, today, 15 minutes into the ceremony a family of 10 people, including a baby, walked into the service late. Instead of sitting in the back of the chapel, they sat in the second pew. As they found their way to the pew, they were making a racket, and then once they sat the baby started crying. I am not talking a wimper, I am talking a full blown blood curdling type of cry. This was all happening while the homily was going on. Honestly I have no idea what was being said, because I was more concerned about the baby crying and was thoroughly distracted by the family. Somehow this clouded my whole experience. The baby was finally removed from the chapel, which helped, but that did not seem to help me.

At the ceremony two parents shared their reflections. They both lost their children this year. One woman got up and spoke and then preached to us about getting counseling and why each one of us needs this. I understand her point, but this is not helpful to ALL of us. In fact, I found her very judgmental and I was thrilled when the chaplain got up and thanked her and nicely ended her from talking. The second mom, presented us psalm 23 (the Lord is my shepherd...) and wanted us to understand why it is so meaningful and beautiful. By the time both of them finished, I felt different. I felt as if I couldn't relate to either of them, which only builds up my level of frustration and anger. If people in the "normal" world don't always get me and then people in this "special club" don't get me either, then what? Who gets me?!!!

I was moved by a reflection shared by a medical resident today. She told us she wasn't good at speaking in public, but was better reading her script. So she proceeded to read. At first, her tone appeared arrogant in the sense that she wanted her audience to know that only a small percentage of people can become doctors. My initial reaction in my head was..... SO what, where is this going?............... As she continued talking she then wanted us to know how pediatric patients have changed how she performs medicine. She says instead of memorizing charts and facts, she now remembers Jane, Bobby, or Sue who had a particular issue or disease. In essence what she was saying is that she has humanized medicine. Treating cancer is not just about the protocols and the medicine, it is about the children and their unique personalities and perspectives that they bring into the battle. I was impressed with this resident and I could hear how several of her patients have taught her the true art of being a good physician.

The main highlight of the service for us was hearing one of Mattie's nurses, and a big Mattie Miracle Cancer Foundation supporter, sing a piece entitled, "Who can fly away." Jenny had emailed me ahead of time and shared the lyrics with me, which I posted below. Jenny has a beautiful and angelic voice and sang this song acappella. The lyrics are deeply moving and many of us in attendance were crying while she was singing. The words hit close to home. It is a powerful song, that has NEVER been recorded, but it gives you insight into a child's perspective while battling a life threatening disease. In so many ways, children know when they are dying, and yet we as adults can't accept this reality. Mattie knew he was dying before we did, even before the scans revealed the cancer spread everywhere. What caught my attention about this song is it hauntingly tells you that children with life threatening illnesses want you present with them today (they want you to talk to them, play with them, and be their friend today and to not be treated differently).


Who Can Fly Away? (music by Linda Nolan)

I'll race you to the slide

I'll push you on the swing
The jungle gym's a castle
Where we clap and sing

We like the swinging bridge

We play with Barbie and Ken
We pretend we're getting married
Though I know, I never can

Will you be my friend?

Will you hold my hand?
Who can swing the highest?
Who can fly, fly away?
Remember me tomorrow
But play, play with me today

I think I understand

Why some people are afraid
I don't like being sick,
I'm glad for my friend Faye

Did you take your medication?

She's always asking me
And when you grow up,
What will you want to be?
Remember me tomorrow
But talk, talk to me today

It's true, if you only knew

I have dreams like you!
Maybe I'll be a teacher
Maybe I'll draw and sing
Maybe a nurse or doctor
May be comforting

I might become your angel

If I don't get well
I don't like being different
The way that I'm different
But I want to make a difference
And I will if I get the chance

So I read a lot of books

And I do good in school
I get a lot of presents
And I get a lot of pills

This wasn't my idea

I was born this way
I don't mean to scare you,
I just want to hear you say:

Will you be my friend?

Will you hold my hand?
Who can swing the highest?
Who can fly, fly away?
Will I have tomorrow?

Will I have you today?

After the ceremony, the hospital had a reception for the families. While at the reception, Peter went into the Lombardi clinic and took a picture of Mattie's first ceiling tile that he created in the clinic. The tile is of Scooby Doo, and I remember painting this tile right along side Mattie! As if it were yesterday.

Despite it being Peter's birthday, he chose to go to the Remembrance Service today. We did not celebrate his birthday because he was not in the mood to do this. That may sound odd, but I understand it perfectly. However, I would like to end tonight's posting with a beautiful letter my mom wrote Peter for his birthday. It is entitled, What Makes a Great Father!

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What Makes a Great Father by Virginia R. Sardi

Peter, you are a remarkable man and have an enviable track record to be proud of not only for your allegiance and dedication to Mattie when he was alive but also for the way you honor his memory now that he is gone. From the day he was born, you were a nurturing and ever present role model to guide him through the baby phase of life who later gave him confidence in his toddler years to reach his full potential. You then witnessed your little boy with wonder in his eyes and so much promise go on to St. Stephen's as an excited kindergartner. Those were Mattie's golden years and your fatherly love were a precious part of what made them so special. You gave him a beautiful foundation upon which to build his trust and to develop an appreciation for the world of nature that so inspired the young artist within his soul. You were always there to nurture that creative spirit in him that sought expression. When he was stricken with cancer, he had other resources with which to compensate for the loneliness of isolation from school, buddies, and the normal flow of activities by refocusing on the intrinsic interests in art, nature, and building that the two of you had cultivated together in happier times.

With the creation of the Mattie Miracle Cancer Foundation two years ago that has as its mission the desire to improve and expand the psychosocial services available to pediatric cancer patients, Mattie's heroic battle against cancer has been memorialized in good works for other children stricken with cancer. The success of the Foundation's fund raising efforts this year are further evidence of the seriousness of purpose that both you and Vicki have devoted to achieving a lasting legacy for Mattie through the Foundation.

There can be no better tribute to Mattie, a boy who still lives in the hearts of all who witnessed his bravery against the relentless destructive cancer that was to claim his life in the end, than what you have accomplished in his name! Your dedication to the preservation of his life story through the Foundation is what puts you in that elite class of men who can be called great fathers! Happy Birthday and many more!!!