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

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

September 10, 2011

Saturday, September 10, 2011

Saturday, September 10, 2011

Tonight's picture was taken in September of 2008. Mattie was in the hospital for chemotherapy and he was given a gift of stackable markers. Mattie wasted no time with this gift, and as you can see, he connected the markers together and made a huge tower. This tower made him smile! Mattie had the kind of smile that lit up a room and caused his eyes to sparkle. Team Mattie was comprised of members from our school communities, and this Team never let him down. They provided such things as weekly gifts and though to some Mattie may have been "spoiled" (yes I had that terminology thrown at me), this type of spoiling and attention was very needed. These gifts helped us cope on some very challenging and heart wrenching days.  

In light of the fact that it is National Childhood Cancer Awareness month, I will be spending the next 18 days sharing a childhood cancer fact with you instead of my daily grief quotes.

Childhood Cancer Fact of the Day: Childhood cancer is the #1 killer of children by disease, more than asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined (National Cancer Institute; Centers for Disease Control & Prevention).

I had a terrible night of sleep last night. I dreamt that our home was filled with live snakes that kept slithering out at me. As fast as they were coming out from under our rugs, Peter was grabbing them and severing their heads. These snakes were bright colors. I can still vividly see the snakes in my head from the dream.... reds, yellows, greens, and blues. One snake however bit Peter and in my dream blood was spewing everywhere and I was trying to contain it. The last part of the dream, Peter was feeling sick, and I had to rush him to the hospital because of the snake bite. Needless to say when I woke up I wasn't feeling great. I am sure there is significance to the snakes, the colors, all the blood, and my fear of Peter getting sick. Nonetheless, I am TOO tired tonight to work that out.


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.

I flew out of Dulles Airport today and security was tight. There were bomb sniffing dogs inside the airport and security men roaming around with riffles. I have seen this in foreign countries but never my own. This made a lasting impression on me, and not a good one.

My flight today was very turbulent and my only saving grace is that we had head winds and arrived 40 minutes early. I never had that going West, but I wasn't complaining. I actually sat in an emergency exit row today because it was the only seat available on the plane. At first I wasn't happy with this seat reservation, but after sitting there today, I LOVED it. I liked the extra leg room and as nutty as this sounds, I like feeling in control of the window door if something happens to the plane. As my faithful readers know, I have many hang ups about flying, and I need ways to feel in control over a moving experience that I am not happy about. Today as we kept hitting one bump after another, I was reminded of what my friend and colleague, Susan once told me. She told me to imagine angels flying under the plane to guide it and keep it safe. Sometimes an angel has to pass the plane along to another angel to take a break. During the pass over from one wing to another, turbulence occurs. Today I imagined my Mattie angels was flying along with me, and I kept looking out the window. As if I would actually see Mattie!

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!

September 9, 2011

Friday, September 9, 2011

Friday, September 9, 2011


Tonight's picture was taken in May of 2006 at Sesame Place in Langhorne, PA. It was Memorial Day weekend, and we were lucky the park wasn't crowded. The weather was also perfect and it allowed Mattie to do all the water activities at the park. Mattie had a great time and went on all sorts of water slides! I love the matching hats in this picture! Though Mattie wasn't a baseball fan, he was very pro "Boston" and rooting for his dad's team!

Instead of a grief quote tonight, I am sharing a beautiful poem that was sent to me today by my friend and colleague, Nancy. Nancy wrote this poem and was inspired by my connection to butterflies and her passion to honor Mattie.


Two Years Have PassedDedicated in memory of Mattie Brown by Nancy Moskowitz
 
What began as a blob
Wrapped tightly in a blanket
Waiting for the proper time to emerge
Stretching and poking towards the sunlight
One wing, a body, another wing
Fascinating shapes and patterns etched delicately
And the colors, each different
Some muted, others bold
Like the sky before a rain.
 
This perfect insect that flutters
Through the air, occasionally landing on a treasured blossom
To sniff the fragrance of said repose.
This is your emblem, sweet Mattie
One of many symbols that those who love you
Treasure and hold dear.

We think of you passionately
Some minute by minute, others at a pace
Fashioned by their memories.
You lived a short life, much like the sacred butterfly
And like this wanderer, carved your mark
Completely within our heart.

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Waking up early today to preside over a licensure board meeting was beyond challenging. I felt absolutely wiped out from yesterday and really the week in general. However, I dragged myself out of bed and hosted the meeting. Unlike our typical marathon meetings, today's meeting was only two hours long. So it was doable.

My friend Tina (who I made squash relish with), wanted to give me gifts today to bring to California. She wants my parents to sample our relish and her fig jam, which I know they will be delighted to experience. So we decided to meet for lunch and chat. Tina hasn't known me very long, and we hadn't had the chance to become friends while Mattie was alive. It was only once Mattie died and I began practically living at Ann's house, did I get to know Tina (who is Ann's neighbor). In fact, 2009-2010, seems like a completely lost year. I know it is a part of me, but I was so traumatized and numb, that my memory of that year is fuzzy. If it weren't for the blog, I really wouldn't have a strong sense or recollection for the day to day activities I did. It was during those days that Ann kept me moving, focused, and doing. She gave me a direction, when I was directionless. However, it is hard to become self-reliant and establish one's own direction in life now. I have had to do this since no one else can do it for me, but I have to admit it is hard and I have to admit at times it is scary. Because it means venturing out on my own and finding who I am again and what I am comfortable doing.

I tell Tina all the time that our friendship works, because it is just that. We are friends because we get along and have commonalities. We are not tied together because of our children. Children bond parents together, and without these ties friendships can disintegrate. In a way, I have learned one of life's most painful and bitter realities..... you learn who your friends are and those who want to remain in your life regardless of the circumstances. Naturally all friendships evolve, but the death of a child in a way is a forced evolutionary process. It forces changes in me and changes in those around me.

Later in the day I came home, did some Foundation work, and then literally had to lie down. Patches, our cat, took to our bed as well, which is VERY unusual. I think the rain and the entire week knocked us out. This evening I can say that I am packed for California and the next time you hear from me I will be in Los Angeles.

I wanted to end tonight's blog with two wonderful messages I received. The first message is from my good friend Christine. Christine's son, Campbell, and Mattie were VERY close kindergarten buddies. They understood and appreciated each other. They were kids who could PLAY for hours with each other. Not in front of a TV, a computer, video games and so forth. They played, they talked, they ran around together, and they created. They loved Legos, but they also had a wonderful way of taking everyday objects and transforming them into all sorts of things in their world of imaginative play. It was beautiful to see and experience their friendship evolve and while observing them, Christine and I became friends. We supported each other through kindergarten and we really looked forward to our continued school days together. With Mattie's cancer and then death, we have lost our everyday playground contact. Despite that, we are still very connected. Mattie created a bond between us and Mattie is also a friend who remains in the forefront of Campbell's mind. You can see below that today Campbell went to Mattie's tree and hung sand dollar ornaments on the tree. He wanted his buddy to know he remembered him.

I received this message from Christine last night. Christine wrote, "Well, the rain has interfered with our plan this evening to visit Mattie's tree. I did want you to know that we are thinking of you, Peter and Mattie. Campbell has two sand dollars all ready to hang in honor and remembrance of his friend. I am sorry it did not work out for today. I really debated getting on my step ladder in the rain, but when the lightening came, I thought it would be best to wait a day or so.  I have a strange incident to share with you...I read on your blog that you recently had a flat tire. A few days ago, we saw that the rear driver's side tire on Austin's car was almost completely flat. A day or so earlier, I placed your Mattie Miracle ribbon magnet on his car on that same side. I wouldn't have given it a second thought if I hadn't just read about your tire experience. Interesting."

The second message I would like to share with you came from one of the undergraduate students at Georgetown University. Charlotte was in attendance on Thursday when we lectured a business school class on the Foundation. Charlotte reached out to us yesterday and shared her meaningful reflections with us about Mattie's story. Her words captured my heart because what they illustrate to me is that our talk impacted her and made a difference. It has caused her to think differently and to also think creatively about ways to help children with cancer. Since yesterday, Charlotte and I have been communicating back and forth and today, I connected her with Linda, Mattie's childlife specialist. I am thrilled that Charlotte wrote to me and shared her perspective with me. As I told her she gave me a great gift this week. I will remember Thursday for a long time to come, but without feedback sometimes it is hard to know whether you really made a difference. Read Charlotte's message and you can judge this for yourself.

Charlotte wrote, "I first of all want to thank you both for coming in to talk to us today about your son Mattie, especially on his anniversary. Today must be extremely difficult for you and I cannot even imagine the pain Mattie and your family have gone through since Mattie was diagnosed with Osteosarcoma. No one should ever have to go through such hardship. It is unbelievable to learn about the lack of funding and attention to psychosocial impacts of childhood cancer and I had no idea until your presentation today. In fact, during lunch I shared Mattie's story and your presentation slides with my sister who is a Nursing student here at Georgetown, and she did not realize the lack of treatment and funding either. Though on an extremely micro-scale, hopefully she can pass this along to her classmates to spread the word.  I wanted to ask you a question in class, but I was extremely touched by your presentation and knew that if I spoke up I probably would have broken out into tears. I thought an email might be safer. I remember you saying how Mattie loved animals, and I was thinking of how great it would have been if Mattie had received a pet visit while he was in the hospital. This idea came to me because my family friend does "pet therapy" once a week at a hospital in Florida and brings her dog in to the hospital to let the patients stroke the dog and be given love. Dogs are so lively and spirited, and I thought it might be nice for children in the cancer ward, like the one your son was in, to be visited by a creature full of life and love. I pet-sit here in Georgetown and perhaps the owner would allow me to bring her dog in to visit the patients. However, I know that patients may have allergies, etc. and Georgetown Hospital might not allow animals to enter. Therefore, I was wondering if you knew by chance their policy in the cancer unit Mattie was in regarding pets, and if you think the children would like to have a pet visit? I am just trying to think of something to give joy to and excite the children and families when I visit, and distract them from their distress and pain. I would appreciate any thoughts you have. It was very moving to listen to the passion you have for funding and providing awareness for childhood cancer. and I feel honored that you came in and talked to us today. Saying that I am so sorry for your loss does not do enough justice. When you said that Mattie was diagnosed on July 23 2008, all I could think about was the fact that I was celebrating my 19th birthday while your poor son was experiencing the worst news of his life. Hearing stories like Mattie's really gives perspective, and it is something we need in this day and age where the business and complications of life distract us from realizing how blessed the rest of us are to be living in healthy bodies and that we should be helping those who need our love and support. Thank you again for your time today, and I hope that you received much warmth today from friends and family. I should think that Mattie is looking down and very proud of the legacy you have given to his life and carried out for the sick children of the world."

September 8, 2011

Thursday, September 8, 2011

Thursday, September 8, 2011

Tonight's picture was taken in January of 2009 at a restaurant on the Hospital campus of Georgetown. That particular day Mattie had a bone and CT scan that literally took FOREVER. He couldn't eat before these tests, and as the hours went by, he was getting very hungry. Part of the bargain for handling all those tests that day was a treat to go out to lunch with Linda (Mattie's Childlife Specialist), Jenny (Mattie's art therapist), and Ann (our friend and Team Mattie coordinator). At lunch Mattie was devouring grilled shrimp! In addition to that, he was chasing (remember Mattie had a prosthetic in his right leg, so chasing for him looked more like scooting around) Ann around the table and stealing shrimp. It was a day to remember, and a day in which Ann nicknamed Mattie, "Shrimp boy." As we acknowledge Mattie's second year missing from our lives, I thought this memory captured his spunk, love for life, sense of humor, and an unsinkable determination. When Mattie was trying to impress something upon me, he would get up into my face and chat, as you can clearly see in this picture.

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.

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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!
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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."

September 7, 2011

Wednesday, September 7, 2011

Wednesday, September 7, 2011

Tonight's picture was taken in May of 2006, at Sesame Place in Langhorne, Pennsylvania. Mattie had a full day at the park and as you can see he left with two Elmo balloons. Elmo was his favorite Sesame Street character. Mattie wasn't a big TV watcher, it just did not engage him. If Sesame Street was on TV, he basically ignored it, until he heard Elmo's music begin. Mattie was then transfixed to the TV and was simply fascinated by this cute red creature. At the park, we bought Mattie an Elmo balloon. However, one of the characters roaming the park that day took a liking to Mattie and gave him a second balloon. Needless to say Mattie was beyond thrilled!


Quote of the day: As long as I can I will look at this world for both of us. As long as I can I will laugh with the birds, I will sing with the flowers, I will pray to the stars, for both of us. ~ Sascha

It has been raining in Washington, DC for DAYS!!! It almost seems worse to me than Tropical Storm Irene. I stayed home most of the day today and worked on preparing the blog for my 18 days away from home. It seemed like an intense project on the eve of Mattie's second anniversary. Actually focusing today in general is hard, and trying to talk intelligently tomorrow at Georgetown's School of Business should be interesting. It is a surreal feeling to go back on campus, the same campus which Mattie died on two years ago. Nonetheless, there is something quite poignant about being given the opportunity to talk to students about Mattie and also we are honored that this class has adopted Mattie Miracle as their community learning project.

As I mentioned last night, I was up working on cellowrap butterflies. My goal is to try to hang them on Mattie's oak tree at school. Last year, thanks to my friend, Junko and her mom, a group of us were able to display praying origami cranes on Mattie's tree. These cranes literally survived the ENTIRE school year. Which is remarkable given the bad weather we had, but these cranes were strong and powerful and also symbolic of the cranes Junko made for Mattie throughout his cancer battle. Junko made Mattie a mobile of 1000 cranes, which always hung over his bed in his hospital room. Now they hang in his room at home.

As you can see, I made several butterflies last night. The butterfly has become a symbol to me of Mattie. When I see one flutter passed me, I think of him. So it seemed like the perfect symbol to tie to his tree this year as we remember him and his heroic battle.

In the midst of the day, I received a lovely email from Joan Holden, the head of Mattie's school. Joan always reaches out to us and never forgets. Joan has already committed to having the next Mattie Miracle Walk on her campus in May of 2012. We very much appreciate St. Stephen's and St. Agnes School's generosity and kindness and for being committed to bringing awareness to childhood cancer.


This evening, Peter and I had dinner with our friend and Mattie Miracle board member, Tamra. It seems fitting that we met tonight, since the day before Mattie died in 2009, Tamra visited us in the pediatric intensive care unit. I will always recall Tamra's visit that morning. She walked into our room, gave us hot tea, coffee, and pastries. She took one look at Mattie and knew there was nothing to say. By that point he was drugged out from SO much pain and was having trouble breathing. She said nothing, but just gave us a hug and then left the room. I remember her visit because her reaction seemed so appropriate and sensitive. Mattie's room at that point became our sanctuary, and to enter it and talk seemed to not only be overwhelming but inappropriate.This evening, in honor of Mattie's memory, and most likely HIS amazing love for acorns, Tamra gave us this beautiful Amish handcrafted bird house. She actually met and spoke with the 14 year old Amish fellow who carved it! This acorn is special to me and most likely will be hung from our lemon tree.  

As we approach the second anniversary of Mattie's death, I wanted you to know we appreciate your support and value each message you send us. It is a challenging day, and each person deals with such memories differently. In my case I admit to getting edgy and snappy, and Peter has already experienced this tonight. We experience Mattie's loss individually and as a couple, so in a way the feelings seem magnified.

September 6, 2011

Tuesday, September 6, 2011




Tuesday, September 6, 2011 -- Mattie died 104 weeks ago today.

Tonight's picture was taken in May of 2006 in Trenton, NJ. On our way up to Pennsylvania, we stopped in NJ to take Mattie to an incredible aquarium, The Adventure Aquarium. It was an adventure for all of us. When we exited the aquarium, directly in front of us was the Delaware River. I felt compelled to snap a picture of Peter and Mattie by the River, with Philadelphia in the background! 

Quote of the day: The sorrow which has no vent in tears may make other organs weep. ~ Henry Maudsley


There is great truth in this quote. One of my organs that weeps is my bladder. I went to see my urologist today, a woman I see every three months. I see her more often than I care to, but she is a very supportive person of my cancer endeavors and always asks about the Foundation and how Mattie Miracle is doing. Today there was a great deal of commotion in her office as she had a patient with dementia roaming the hallways without pants on. This lady wanted to be seen right away and did not want to wait another minute for the doctor. I asked the nurse if this patient was in pain, because I empathetize with anyone with bladder pain. It turns out that the patient wasn't in pain, she just needed assurance and attention. Needless to say, I felt for her and allowed her to have my appointment time, while I waited an additional 30 minutes. In the mean time, I had a good conversation with my doctor's resident and her nurses. By the time my doctor came in, she told me I looked ten years younger than the last time she saw me and wanted to know my secret. I laughed, because I DO NOT look younger, but she always tries to make me smile. We had a good old time talking about zumba and pilates and I attributed any differences in me to those activities!

Today seemed like a day in which one thing after another happened. I began my day with yet another flat tire. This was a completely different tire than the one that went flat two weeks ago. Fortunately this time I was in our parking garage and I just left the car there and used Peter's car instead. The rear driver's side tire was flat, this is the side of the car Mattie used to sit on. He always sat right behind me so I could see him in my rear view mirror. It just seems odd to me that on a day that marks Mattie's death, I would find my tire closest to his seat deflated. Mind you the tire was fine all weekend. My car was parked in our garage the whole holiday weekend, which makes it seem very curious how it went flat today.

I spent the rest of the day running chores. I have decided to make colorful cellowrap butterflies for Mattie's oak tree (located at his school) to acknowledge the second anniversary of his death. So I spent some time at one of my favorite stores, AC Moore, this afternoon getting materials. Tonight, I am working away on the project. In addition, on Saturday of this week, I am leaving town for 18 days to visit my parents in Los Angeles. Typically I do not travel in the Fall, but when Peter told me he had a project to travel to in San Diego in September, I decided going West to spend time with my parents would be a good idea. Summer was challenging and the fall isn't looking much better, and my parents understand this and want to help.

Before I headed home today, I went to spend time with Ann's mother, Mary. I tried to explain to Mary that I was leaving town at the end of the week, and if she does not see me for a while, there is a reason. The reason is I will be in California. I know she will not remember this, but some times I do things because they seem like the right thing to do internally.

I appreciate the many emails I received today from friends letting me know you are thinking of us today and on Thursday, the second anniversary of Mattie's death. Your thoughts, reflections, and feelings are all greatly valued. I had several text message exchanges today with my friend Tanja. We were talking about butterflies and she expressed how perfect the butterfly is as a reminder of Mattie. Since butterflies have a way of engaging and fascinating those around them, not unlike Mattie. It was a very touching comment, and quite poignant too since butterflies never linger in one place, and flutter by as quickly as they came. Seems to be true of Mattie as well.

I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend. Kristen wrote, "Today is Tuesday...a Tuesday which nears a day I will never forget. The weather is changing signifying the loss of summer and also signifying the loss of Mattie. I am certain you are looking at Thursday and thinking that it seems like it was just last week or yesterday that you lived those moments with him on September 8th. It doesn't seem possible that two years have gone by... I have to echo last week's email to you. I don't know how you do it. But I do know it isn't easy. I admire you and think of you both often. More than anything else this week...I wish you the warmth of a Mattie hug to envelope and comfort you. Much love, on this Tuesday and every day."

The second message is from my friend and colleague. Nancy wrote, "Your description of the first oncologist was so vivid that I could feel your anger and resentment through the computer. Whether he ever really got it as far as being more attentive to his patients, he did get that the Brown family were a powerful force. As this Tuesday marks another week without Mattie, I wanted to send a special hug as this will be a double whammy week for the two of you. Please both of you be gentle with yourselves this week."

September 5, 2011

Monday, September 5, 2011

Monday, September 5, 2011

Tonight's picture was taken in May of 2006. Mattie always ventured with Peter on the weekends, and that particular day they went to Harris Teeter, a grocery store, and Mattie came home with a balloon and sugar cookies (something the store provides children who shop there with their parents). In any case, I am showing you this picture because Mattie loved balloons. Probably not unlike any child, but he loved them so much that he even saved them when they deflated. It was always hard to convince Mattie to throw away old balloons, but the thinking was it had to be done to make way for new balloons. Not unlike me, Mattie was sentimental about things and had a hard time parting with objects that reminded him of a person or event.

Quote of the day: There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, and people we can't live without but have to let go. ~ Author Unknown


When I think back to Labor Day of 2008, I distinctly remember that Peter, Mattie, and I were in Georgetown University Hospital's PICU. Mattie was getting an infusion of chemotherapy and that was our first "holiday" we spent in the Hospital. Naturally as a first it was devastating, but over time we unfortunately learned to be confined and isolated in the Hospital for MANY holidays. Maya Angelou's quote comes to mind tonight.... "I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."

Angelou's quote is very true and very telling because do you want to know what was the most painful thing about Labor Day of 2008? It may surprise you to know that it wasn't only the fact that Mattie had cancer and we were in a frightening environment of a PICU! The most disturbing thing that I can recall is how Mattie's first oncologist made us feel (and for my faithful readers, I am NOT referring to Kristen).  

On that Friday of Labor Day weekend (so in 2008, that was August 29), I will always remember Mattie's oncologist visited us before he went on his merry way for the day. He swooped into the room, in his usual narcissistic fashion, talked about himself, and then proceeded to tell us he was taking his whole family to see the Lion King musical that holiday weekend. In the next breath he went on to tell me that he was going to have a harder day than us because of the challenge of having back to back meetings. The final nail on the coffin was when he left the room and wished us a good holiday weekend. Any one of these statements would have been inappropriate, however, when taken altogether they were NOT only insulting but down right insensitive and toxic. This doctor quickly learned that when you tick me off, I am not going to be a little girl and cower in the corner! As soon as he left the room, I looked at Peter and asked him if he was as upset as I was by this whole interchange. He indeed was, but was more rational about it. I wasn't rational, I was irritated and wanted to teach this doctor a lesson (not only for myself but for all the other parents he did this to, who couldn't defend themselves!!!). So with that, I reached for my Blackberry and sent him a message that enlightened him about his demeanor and bedside manner. I explained to him that NO matter how hard his day was going to be, it couldn't compare to being stuck in a hospital by your child's bedside undergoing chemotherapy. In addition, I asked him how I could possibly have a good weekend living in a two by four of a room, sleeping in a chair, sharing a bathroom with another family, and worrying about Mattie's reaction to chemotherapy, and about Mattie's life in general. Are you kidding, HAVE A GOOD WEEKEND???!!!

Within minutes of receiving my email, this doctor called me on my cell phone to apologize. I spent the next eight months with this doctor (until we removed him from Mattie's case and replaced him with Kristen) enlightening him about his consistently poor behavior and inappropriate commentary. I should also let you know that this doctor once said to me in front of Mattie's art therapists and my mom, that he longed for the day when mothers (unlike me) just accepted what he said and did not challenge him! Can you imagine how I reacted to this?!

So what's the point? The point is it is three years later and I remember ALL of this like it were yesterday. I remember it because this doctor made us feel inconsequential. The medical profession must be concerned with human relations and emotions, because in the end, guess what? We are human and under times of crisis what we remember always is HOW YOU MADE US FEEL!

Peter and I had a quiet day today, but we did get out and walked on Roosevelt Island. I am disappointed that all the forget me not seeds I planted there haven't taken. I can't understand this, but I am determined. We saw a great deal of wonderful bird traffic on the Island and enjoyed being out of our home for a bit.

I would like to end tonight's posting with a Facebook comment I received from a fellow preschool mom, who also happens to be an ICU nurse. Kathy's message is in response to my blog posting from last night. Kathy wrote, "Yesterday I took care of a young woman that had become very, very sick after she gave birth to her twins. Something good happened yesterday. The staff was so happy everyone was smiling. We were talking and realized that it is so rare for us (in the ICU) to actually see good things happen. We see so much misery. Even if our patients "get better" and move out of the ICU, its oftentimes just temporary. No, physicians can not heal all wounds and no they can not take away our grief. It definitely is beyond our control."

September 4, 2011

Sunday, September 4, 2011

Sunday, September 4, 2011

Tonight's picture was taken in September of 2007. One weekend Peter and I took Mattie to a park along the Chesapeake Bay. At the park Mattie saw a wooden gazebo and wanted to sit underneath it. While sitting, Peter snapped a picture of us. Mattie and I spent a great deal of time together everyday of his life. His life was important to me and as such, most things I did (even work) revolved around him. Now that he is gone, there is a major void in our lives. It isn't only the emotional component of his death and loss, but there is a real physical component to his loss. Children have a way of guiding your days, filling up your time, and giving you a different outlook about the present and the future. Without Mattie, we are lost at times. Certainly Peter works full time and I manage the Foundation, but these things in no way fill the void that is left behind.

Quote of the day: Time is a physician that heals every grief. ~ Diphilus

For my faithful blog readers, I am sure I most likely do not need to tell you what I think about this quote from the Ancient Greek poet, Diphilus. One of the cliches which I absolutely detest is time heals all wounds. I would like to know the origin of this quote, because I have to imagine it was written by someone who did not have the foggiest notion about loss and trauma. In fact, when I googled this cliche, I found a quote by Rose Kennedy which said..... "It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone."

Diphilus' quote further irritates me because in addition to feeling that time heals all wounds he was equating time to a physician. Newsflash, physicians do not and can NOT heal all wounds, grief included. I have interacted with enough doctors to know that many of them have a God like complex in which they feel as if they can and do perform miracles. Some expect to be treated accordingly. However, oncologists tend to be quite different. Oncologists have a more balanced view of the world of medicine, I imagine they are forced to be this way because despite their best efforts medications and surgery don't always work for their patients and they die. It is within some of Mattie's doctors that I found humility, compassion, and a true sense of collaboration. They understood that it would take more than medicine to try to attack Mattie's cancer.

So though I do not relate to this statement I felt it was important to reiterate that time and physicians DO NOT heal all wounds. I think we have allowed ourselves to believe both because it then allows us a certain sense of control and peace in our lives. After all, it is hard to live with the simple fact that having a terminal illness is beyond any of our control as well as the grief and pain experienced from surviving life's challenges and traumas have no expiration date.  

Today Peter and I rented a double kayak and paddled our way around the Potomac River. With each time that I kayak with Peter, I find that I am learning to row much better and in fact Peter and I were rowing in rhythm. We rowed for an hour at which point I couldn't do any more. However, along our journey I captured some wonderful sights by camera. Yes I am indeed crazy enough to take a camera into a kayak. I wrap it in a Ziploc bag, but there are two things I have learned never to travel without anywhere.... one is my Blackberry and the other is my camera.


This picture makes me laugh! Literally in the middle of the river was a man who stopped paddle boarding (which if you haven't seen this is just a surf board what a person stands on top of it, and uses a paddle while standing on top of the board to propel forward), and decided to lie on his board to relax and capture sun. Keep in mind that the water was busy today with all sorts of boat traffic since it is a holiday weekend. I admire the fact that he could do this and wasn't worried in the least that he could get hit by a boat.

As we passed Washington Harbor, I saw ducks sitting on an incredible stack of drift wood. This particular duck caught my attention because he seemed so regal and peaceful sitting on this wood. I frankly was stunned that these ducks did not move AT all, despite our kayak coming quite close to them. Peter and I joked that they are "city ducks" and are simply used to people all around them.
We kayaked around Roosevelt Island and I captured a picture of the walking Bridge that we usually traverse on the weekends to get to the Island. In addition, in the far background you can also see Georgetown University. The building with the spires on it is really a landmark to Georgetown's campus, and I know on certain occasions when I took a break and left the pediatric unit of the hospital for a few minutes, I occasionally walked to this building on campus. It was one of my few escapes.

With the camera to my side, I snapped a picture of Peter in our Kayak!
The buildings around us have placed their American flags out in honor of September 11th. It makes me recall how the city was decorated with flags after September 11, 2001.
I captured "Ducks on a Rock!" We literally paddled right next to these ladies and they didn't move. They were a marvelous sight to see.
A close up of the girls on a rock!
As we kayaked near the Key Bridge today, a couple standing on the walkway above us on the bridge waved to us. In all the years I lived in DC, I have never been in a kayak under the bridge, so I felt compelled to snap a picture of this moment.
At the end of our journey today we saw a Great Blue Heron. One of my favorite birds to spot. We are beginning to get to know the people who work down by the dock who help people into kayaks. This one fellow today asked Peter and I about our orange drawstring bag and t-shirts. All Mattie Miracle items! When we told him about the Foundation, he not only wished us a good day, but told us he hopes God blesses us.