Thursday, September 8, 2011
Quote of the day:
To succeed you have to believe in something with such a passion that it becomes a reality. ~ Anita Roddick
Peter and I began our day at Georgetown University's Business School. Peter is a graduate of Georgetown's MBA program and we are honored that one of his professors, Bob Bies, has adopted The Mattie Miracle Cancer Foundation for his class' community based project. To the class today, we brought a PowerPoint presentation, a remembrance video of Mattie, and lots of props (toys and creations of Mattie's). In my mind our goal was to make Mattie, a child they never met, real for them. If you can understand that he was a real child, then his battle with cancer and his death, also become real and profound. So though our goal today was to talk to these students about childhood cancer and the Foundation, my underlying goal was to tell Mattie's story and to let people understand how special he was and how changed our lives are because of his existence.
Peter's professor began the class session with the quote above. Typically as my readers know, I post daily grief quotes. However, this quote caught my attention. I would say today Peter and I operationalized this quote. We believe in Mattie, we believe and understand the battle he endured, and we believe and understand the impact his cancer and death has had on us. Armed with this, it makes us passionate and able to achieve a reality. The reality was plain and simple today.... we touched many of these undergraduates.
Frankly when I was their age, I am not sure how I would have taken to such an emotionally laden presentation. But they did a great job, several cried through the remembrance video (not unlike Peter and I), and then what captured my attention were the questions they asked us after the presentation was done. One thing that struck me about today's presentation was it was different from others we have given. It was different because I was presenting to people who knew NOTHING about Mattie. I am so used to interacting with those who knew Mattie and shared memories of him, that what happens when I am with these folks is I usually do not have to work hard at describing and enlightening them to Mattie's personality, to Mattie's brightness, and to Mattie's creativity. However, to over 30 students today, Mattie was JUST a name in the beginning. We had to paint a picture of who our son was and this actually required thinking and reflection. This class enabled us to reminiscence, which is actually a very healthy and positive therapeutic tool! After the class, I was exhausted but energized. I was energized because in a way I got to share my son with others, and in a way it was like falling in love with Mattie all over again. I can't recall (since Mattie died) when I had this positive feeling. Of course the other aspect of myself, is that I also love teaching, and today I was back doing something that has been a part of my life for over a decade.
Before the presentation started, I snapped a picture of some of the Mattie props we brought into the classroom. The three you can see here are Sunshine, the beautiful yellow boa constrictor that Mattie got from his osteo friend, Jocelyn. Sunshine was a gift that would always remind Mattie of his 7th reptile alive birthday party. The second item is a photo of the beautiful "Mr. Sun" painting Mattie created with Debbie, his art teacher. I wanted them to see Mr. Sun not only to show them Mattie's creativity, but to let them know that Mattie in essence selected the symbol that has become the logo of our Foundation, THE SUN! The third item, is smaller and located on top of the frame. It was one of Mattie's plastic butterflies (my personal symbol of Mattie).
I also put props on the floor, such as Lightning McQueen's trailer (Mac), plastic bugs, and Thomas the Tank Engine. All of these things were so Mattie. What you can't see is on the podium, I placed a Lego creation as well as Wall-E (the character from the movie).
Peter snapped a picture of me mid-sentence as I was talking to the students about the psychosocial impact of childhood cancer. Because I know the majority of these students are not married or have children, I felt like I had to find a way to make cancer real to them. So before talking about the content on this slide, I had them do an imagery exercise. In which I told them that they were just diagnosed with cancer today. With that, their lives immediately changed. I told them they couldn't live in their dorms, attend classes, see their friends often, that they will lose their hair, lose their appetites, feel sick most days, and slowly begin to become socially isolated. By the time I finished with my long list, I think they got the picture.
We used up the whole class period, 75 minutes, and some of the questions today floored me. The questions were very sensitive, in tune to what we were expressing, honest, and thought provoking. The students really got me thinking about Mattie and several asked me to give voice to what Mattie must have been feeling and observing in the hospital. In fact one of the student's asked me about one of Mattie's frustrations. One that I mentioned was that Mattie felt that doctors did not listen to him. He would say he was in pain or something was bothering him, but it wasn't until I either advocated for him or in some cases was like a tidal wave passing through, did he get what he needed. Internally I knew this, but frankly no one ever asked me such a question before. The questions got me thinking out of the box today and really exploring Mattie, something I rarely get to do. So these students gave me a gift today. Another student commented by saying that Peter and I are very "self less" and wanted to know how we cared for ourselves during Mattie battle and now in his death. It was a great question. Self care while Mattie was battling cancer was NOT a top priority for myself. Being by his side was. As I told this student today, I am so happy I made this decision, because I can look back on my superhuman effort with pride and without regrets.
After the class, several students came up to hug me. In fact, as we were walking out of the building, one young man from the class hugged Peter and then me. I am actually glad Peter took the day off from work and got to be with me and feel at ease about talking, remembering Mattie, and feeling his grief. Not something he can do at work. It is hard to be two people, the very capable and functioning professional, and then the husband who lost a child. Those worlds don't always fit together. Today he did not have to worry about that, he just had to feel however he felt and I think this male student hugging him was great affirmation. In fact, there were several sensitive young men in this class today, and if I were the women in this class, I would focus upon them. They are a rare and special breed.
Later this afternoon, between rain storms, we visited Mattie's Oak Tree. We hung over 20 cellowrap butterflies on the tree, and it looks very colorful. Ironically there are several praying origami cranes on the tree from last year's first anniversary gathering. This is quite a tree. It has grown tremendously over the summer and is strong and healthy. All of our previously placed items are doing well on the tree, such as our butterfly wind chime, our butterfly Christmas ornament, a birthday butterfly ornament, as well as our acorn bird house. In fact, we found a wren's nest inside the bird house. So we have tenants within the tree!
While gathering at the tree, we talked to Mattie's science teacher, one of the first grade teachers (who Mattie never had the chance to experience), the chaplain at the school, and of course Bob, aka Magic Man. Bob is the head of Mattie's lower school and visited Mattie in the hospital religiously and taught him magic. Magic was an activity that Mattie's loved because he did not have to move around and he was learning skills others did not know, which made him feel good about himself and special. Mattie loved performing for his nurses and therapists! Bob invited us to his office to chat and then introduced us to one of his latest magic tricks. Peter loves such an intellectual challenge and is good at studying a trick and figuring it out. Whereas, I am so gullible and buy these tricks hook line and sinker. I remember sitting in Bob's office in 2009, and crying right after Mattie died. I remember that day, and though I was composed today, the sadness remains.
This morning at 8am we had a special delivery. Peter went down to get it. We rarely get a special delivery, so I figured it might be flowers. But it wasn't! Instead it was a huge stack of papers that I have to read for my licensure board meeting tomorrow. Lovely, not what my head can even absorb today. However, this morning after Georgetown's presentation, at our front desk was awaiting these beautiful flowers from Mattie's oncologist, Kristen. Somehow Kristen knew I needed flowers. Not sure how she deduced that, but they brought a smile to my face. The whiteness of the flowers remind me of Mattie's innocence and love.
This afternoon after much debating, Peter and I went out to lunch with Ann and Alison (our two crucial leaders in Team Mattie). We debated about doing anything remotely social today, but Ann and Alison have been through the good, the bad, and the ugly with us. So not spending time with them today didn't seem right. They will always be a part of our lives and world because of the unforgettable role they played during a very unbelievable and horrific nightmare. At lunch they gave me this butterfly pin in remembrance of Mattie. A perfect tribute, since butterflies remind me of Mattie and Mattie's favorite color was red.
I would like to end tonight's posting with several items. The first is a link to the pediatric cancer caucus website that launched today. On the website, our Resolution is featured!
Van Hollen and McCaul Introduce H.Res. 262
In addition, I would like to share a reflection my mom sent to me along with countless messages we received today. If I was ever in doubt whether people remembered Mattie, today's email, texting, and Facebook traffic spoke volumes. I am still working on responding to every message I received. To all of you who keep Mattie's memory alive, THANK YOU! As Peter's professor said to me today, I am Mattie's greatest legacy, and I can't do it without all of you.
=======================================
A Day of Recollection by Virginia R. Sardi
The personal trauma that forever altered my life occurred on July 23, 2008. Like September 11, 2001, a day of national tragedy, the sky was brilliantly blue, the sun was shining and everything in my life seemed to be perfect. I had lunch with good friends, ran some errands and decided to take an afternoon break by stopping in for iced tea at Priscilla’s, a local coffee shop in Toluca Lake. Just as I settled down, I received a telephone call that was to change my life and the lives of everyone I held dear forever. Vicki called and I was so glad to hear her voice until I sensed that something was terribly wrong. A chill ran down my spine as she broke it to me that she had just been told by a radiologist, who detected from an x-ray of his right arm, that Mattie had bone cancer. What went through my mind was sheer terror at the thought of the consequences this deadly disease would have on Mattie whose future once seemed so promising but now appeared suddenly bleak and forbidding. A beautiful day was transformed into the saddest day of my life with my mind running wild vividly imagining how his future held a life of unbearable pain and suffering. My anxiety was heightened by visions of Mattie learning to cope with disabilities and facing an ongoing battle with one of the most deadly cancers known to mankind. I immediately felt a need to protect him from the indignities of public scrutiny that he would be exposed to as a young child who was physically less than perfect. In retrospect, the reality of the fourteen months that Mattie lived was far more painfully dramatic than I would ever allow my mind to envision. Through it all, I marveled at Mattie’s bravery and his determination to live life his way despite the fear, anxiety and stress of living each day with invasive treatments, relentless pain and scary surgeries and endless tests. For all the agony he went through, he never gave in or felt sorry for himself. He was smart enough to know what he was up against and made the choice to spend whatever time he had left doing the things he loved. I salute him for the strong will that kept him focused on the positive and will always regard him as a role model for the rest of us to emulate in times of trouble.
Two hard years have passed since he died. I relate to Vicki’s comments about grief and how poorly it is understood by those who have not experienced the pain of losing a child. I too have been approached often by well intentioned people who have tried to rationalize, theologize, sympathize and offer me their interpretations of how Mattie remains present in my life. What I feel is a great loss, an empty place in my heart that can never be filled, something no one can ever fully comprehend unless they have been through it. Traditional words of comfort given me by well meaning friends are little more than mumbo-jumbo psychobabble from my cynical perspective. What troubles me the most is that I sense many of them hold on to the notion that the clock is ticking for me and they expect with its passage I will “get over it” and go back to living life as before. They are wrong for there is nothing in this world that can console the inconsolable!
========================================
To check out all the messages posted to our Facebook Wall today, click below:
A SAMPLE OF MESSAGES EMAILED TO ME----------------------------
The first message is from our friend, Louise. Louise is a graduate of Mattie's school and she had the opportunity to help us care for Mattie during the summer of 2009. Louise wrote, "I just wanted to let you all know that I have been thinking of you, especially today. I have so enjoyed getting to know the two of you and I can't think of a more special time in my life than my time with Mattie. Although my time with him was short, some of my happiest and most beautiful memories were made with him. I can't look at a Christmas light display or those reindeer light fixtures without thinking of helping Mattie and Peter take them down one Sunday in January of 2009. I recall Mattie giggling and causing Peter and I to laugh when the light-up reindeer's head kept falling off. Both the two of you and Mattie gave me what I really needed at that point in my life and my memories with all of you remind me of the joy and goodness in the world that is often easy to forget. Meeting all of you brightened my world and made me into a more compassionate, empathetic, and relatable person. I can't thank you enough for that. So I must say that this day evokes a mixture of emotions, but overall is bittersweet and not just a demarcation of an ending, but also of a beginning. I hope that you both are well and I wanted to send you a note to give thanks not only for my time with Mattie, but to tell you what a pleasure it has been to know both of you."
The second message is from our friend, Meredith. Meredith is Louise's sister and also got to know Mattie during the summer of 2009. Meredith wrote, "I've thought about you guys and Mattie a lot lately. I've been wearing my Mattie bracelet to remind me that every day is a gift, and that Mattie was such a gift to me and Louise. I can't believe he's gone, but his love and kindness and true wisdom lives on in you and all the people that he touched. I love you guys and you will forever be angels and mentors in my life. Mattie will always be my the angel that marks my life's turning point. He really taught me the goodness of man kind and how to truly live a good life. I hope to see you over Thanksgiving. Thank you for letting me be a part of Mattie's life, and thank you for being a part of mine. With so so so much love and gratitude for everything."
The third message is from Mattie's childlife specialist, Linda. Linda wrote, "Thinking of you and Peter today. Your Georgetown family loves you. Thank you for sharing Mattie and your life with us. We have so many beautiful memories and still making new ones and are so thankful to be able to connect and see you and Peter!! Much love to you!!!"
The fourth message is from a friend and fellow childhood cancer mom. Cathy wrote, "Hugs to you both on this difficult day. I mentioned on facebook but will say it again here - you do such an incredible job of keeping Mattie alive in your blog that it is hard to believe that it has been two years since he passed away. We do think about you every day and Bridget and I frequently talk about Mattie, his fascinating stories and creative art work. We have met many children in our past few years at Lombardi but Mattie is definitely one who stands out and will live on in our hearts forever. Thank you for your hard work, for I know it must be a challenge to maintain the blog every day and to advocate for all children with cancer. Your support means more to us than I could ever tell you and we hope to be here for you anytime you need us."
The fifth message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "My heart goes out to you both today. I wish I could do something to ease your pain. Yet I know that isn't possible. Please know that I am thinking of you today and always."
The sixth message is from one of Mattie's outstanding childlife interns. Meg was Mattie's physical therapy buddy and had a great rapport with him. Meg wrote, "I know that you have hoards of people sending love your way today and I just wanted to drop you a short note. Thank you for letting me be a part of Mattie's life. The ripple effect that he started is never ending. And we won't see the end for years and years. I think of him, you and Peter everyday. My office is decked out in Mattie pictures and of course the Willow Tree Hope statue is on my desk. I always ask myself one simple question before I start an activity with a child: would Mattie like this? If it doesn't pass the Mattie Test it doesn't get done. My thoughts and prayers are with you today and everyday."
The seventh message is from Mattie's sedation nurse angel and our friend, Debbi. Debbi wrote, "You have been on my mind and in my heart all summer, but most especially this past week. I can't believe it's been two years! If I still feel the pain and loss of Mattie, I have to wonder how it has to be for you both. The fact that you turned the loss of Mattie into the foundation, and into the tremendous help you have given to the pediatrics department here is such a testament to you both! I still think of you and Mattie almost daily. I opened the Georgetown Pediatrics newsletter at my house this week, and there you were! How appropriate for the article to come this week. Please know that you are in my prayers and heart today. I'm sad that these rains are keeping us all from seeing the Mattie moon, but perhaps the rain is appropriate, too. The heavens are sharing their tears for Mattie."
The eighth message is from our friend and one of Mattie's outstanding sedation nurses, Norma. Norma wrote, "I just wanted to let you know I'm thinking of you Peter and Mattie today. Sending hugs your way. Thank you for having allowed me to care for your precious boy. I will always remember him and your family."
Saturday, September 10, 2011
Peter drove me to the airport this morning and we said our good-byes. Spending time apart from each other now that Mattie has died is problematic. I have had to get used to it while Peter has been on overseas travel, but I believe this may be my first long trip away from home, leaving him behind. Thankfully due to my addiction, the blackberry, we are in constant contact. Peter went for a walk on Roosevelt Island today and had an amazing deer sighting. He sent me this fabulous picture! I have been looking all spring and summer for a deer on the Island and never saw one! It is ironic that Peter would see one today. 
By the time I got on the ground in Los Angeles and then got to my parents house I felt completely motion sick. It took over an hour to feel like I was on solid ground again. It teaches me to travel without Dramamine. This evening my parents introduced me to a new restaurant located in the hills near where they live. The restaurant overlooked a public golf course. The golf course was SO beautiful, it was hard to believe it wasn't a private club. I love sitting outside and taking in the fresh air, so this restaurant was right up my alley. 
While eating dinner, a mother deer and her baby traversed the golfing green. I jumped out of my seat to snap a picture. This would have been a sighting Mattie would have absolutely LOVED! He would have most likely said, there is Unamoon (what Mattie called me) with her Mattie. 
The final picture I leave you with tonight is of two deer. I found these two grazing alongside the hill near my parent's house. Deer in California look very different in color from our DC deer. I call these deer... the LA Cappuccinos!
