Thursday, June 21, 2012

Thursday, June 21, 2012

Tonight's picture was taken in May of 2006. We went to the grocery store together, and while there, Mattie got this yellow balloon. This particular grocery store caters to kids and provides cookies and balloons. Two approved items on any shopping trip with Mattie. Mattie, not unlike most children (though I hear I was different, since I was fascinated by food at an early age!), hated going grocery shopping, and being strapped into a shopping carriage in his early years was painful for him. With Mattie I learned how to shop while NEVER stopping the carriage. It was speed shopping at its best, because Mattie preferred to be in constant motion.

Quote of the day: After the game, the king and the pawn go into the same box. ~ Italian Proverb

I started the day by going to my zumba class. The first song Jenny played today was Dancing Queen. For most people in the classroom, they have NO idea how significant this song is to me, but Jenny does. Mattie liked ABBA music and he literally did physical therapy around the Georgetown University Hospital hallways to this song. I can't possibly think of this song without thinking of Mattie, his battle, and the countless hours of therapy we did together. Now in hindsight, I know how much pain Mattie had to be in since his cancer was spreading everywhere. Now I sometimes feel guilty that we pushed him to try to do therapy. But at the time, I used every motivating technique possible to try to get Mattie to energize and participate in his recovery. A recovery that NEVER happened.

After my class was over, I received a text message from my friend, Tina. Tina wanted to know what I was up to and invited me over to her house. I naturally hadn't planned for that today, but instead was going to work at home after my class. However, I appreciated the opportunity to connect, chat, see family pictures, and brainstorm about the Foundation. It is funny, I saw many wonderful family photos that Tina shared with me today, and then thought, that this is so lovely, I should share pictures with Tina too. To me seeing pictures and sharing stories are special ways to connect with a friend. But then I stopped and thought about this as I was driving home and realize, I do share pictures with Tina. Just not in the traditional sense. I share pictures with Tina through Mattie's blog, and since she is an avid blog reader, she shares in this part of my life. I have found that those closest to me are those who are avid blog readers. Naturally this is not a mandatory component of our friendship, but I find that on some level these individuals realize the blog is a vital part of me, and if you want to understand and be close to me, reading the blog is important. The blog represents Mattie to me. Mattie in words, and since Mattie was and is one of the most important things in my life, so is the blog. I have a hunch that those closest to me get that, without me having to state it. 

This afternoon, I had an appointment in the city, and while walking to my destination, I went through the campus of the George Washington University. While walking, I bumped into one of my former professors. When he saw me, he stopped to talk with me and asked me about the Foundation and how I was doing. However, I sensed he wasn't just going through the motions, he genuinely wanted to know how I was surviving without Mattie. I found his insight into my loss intriguing and then he admitted to me that his sister died when she was only 21 years old. He said that his parents NEVER recovered from this loss, and seeing this through the eyes of his parents, he worries about me. It was a very honest, real, and meaningful conversation. One I hadn't expected today.

I have two more nights of Walk photos to share with you! I haven't shared every single photo with you, but I have tried to give our readers a feeling for every aspect of the Walk.

At the Walk, we always have a ceremony in which Peter, myself, and our guest speakers share facts, insights, and feelings with our attendees. This is a photo of Peter speaking at the ceremony. Peter did an outstanding job of presenting childhood cancer awareness facts, the mission of the Foundation, and why addressing the psychosocial needs of children and their families battling cancer is crucial.

While listening to the speakers, one of our photographers snapped a picture of me. What I want you to see here is the beautiful headband I was wearing. This headband was designed especially for me by Ellie (the 10 year old creator of Bands for Hope). Ellie knows how special butterflies are to me, and that they symbolize Mattie's spirit. I attached a link to the May 22nd blog posting which highlights the message I delivered at the Walk.  
 http://mattiebear.blogspot.com/2012/05/tuesday-may-22-2012.html

This is a photo of Danielle, a leukemia cancer survivor, and her brother, Wade. Both shared their thoughts and feelings of surviving childhood cancer and the impact of this disease on the family system.







This is a picture of Wade, who gave a sibling's account of watching his sister Danielle battle cancer. Childhood cancer impacts siblings, especially since parents must focus their attention toward the medical care of the child with cancer. This redirection of attention, can impact every member of the family.

This is Marilyn, Danielle and Wade's mom. Marilyn is a wonderful parent advocate, and if you should want to read the speech she delivered, please click on the link to the May 20th blog posting below.  
 http://mattiebear.blogspot.com/2012/05/sunday-may-20-2012.html

This is a picture of Coach Dave. Coach Dave has been the Master of our Walk Ceremony for three years now. Dave is a crucial part of Team Mattie, and visited Mattie often at the hospital and at home. Like Peter, Dave wears his Mattie Miracle orange wristband everyday, as a reminder of this special 7 year old's presence in his life.

The photographers caught Peter and I in motion right before the Walk ceremony.

Immediately after the Walk ceremony, our special guests gathered on the track to take a picture with our banner. Our special guests are comprised of family, our Georgetown Hospital family, and childhood cancer survivors!

I would have never thought to take this picture, but before the actual walk began, one of our photographers took a close up shot of our banner and Amanda, holding the banner. I have highlighted Amanda's attendance at our Walk previously on the blog. Amanda is an Ewing's sarcoma survivor, and she proudly held our banner and led us around the track for the first lap.

The Walk attracts people of all ages! Here is a picture of one of our youngest walkers!

This picture captures many of Mattie's friends running at the Walk. Friends from both preschool (Emily and Charles) and kindergarten (Cameron and Tim)!

As I mentioned before on the blog, there is nothing Amanda can't do! As you can see, she is quite a runner and she truly inspires those of us in her presence.

I love this picture because along side Amanda is Mattie's friend, Kazu (Junko's son). Check out this picture, Kazu is literally flying through the air.

This is a picture of Junko's daughter, Bethie. When I look at Kazu and Bethie, they remind me of Mattie. They all have that slender and delicate body type. Most of the children in attendance were running and walking to have fun and to celebrate the spirit of the day. However, for Kazu and Bethie (and all of Mattie's friends), I imagine the walking and running on this track is a reminder of Mattie.

Many of our Georgetown University Hospital family were captured in this picture. The two ladies in the front are Tricia (one of Mattie's outstanding HEM/ONC nurses) and Katie (one of the wonderful Childlife Specialists at the Hospital). Behind Katie, is Toni (Brandon's mom).

I LOVE this picture! To me it captures our entire walk theme.... Love of Family! While this mom and daughter were walking together, this mom leaned over and kissed her daughter. That alone is touching, but what you should know is this is Suzanne. Suzanne is the mom of two beautiful daughters, the one in this picture and Amanda (an Ewing's sarcoma survivor). To me this photo has great meaning because it wasn't only Amanda fighting cancer, the cancer impacted her sister and the entire family. This is a proud mom, and I am so happy this tender moment was captured that day.

Wednesday, June 20, 2012

Wednesday, June 20, 2012

Tonight's picture was taken in May of 2006 at Sesame Street Place. Mattie and Peter went down a huge water tubing slide, and Mattie loved it. This was the same child who began life HATING slides and having great fear of water. By age four, all that changed, and Mattie seemed like a different kid who loved excitement and the thrill of a ride. To me this speaks volumes about the importance of early interventions and the constant support and encouragement Peter and I provided Mattie as we was building confidence and developing his physical skills.



Quote of the day: He that will not reflect is a ruined man. ~ Asian Proverb

This afternoon, Peter and I ventured to Capitol Hill in EXTREME heat and visited Rep. Mike McCaul's office. Rep. McCaul is one of the congressional members who helped us host our Psychosocial Symposium on the Hill in March. When you walk into the main reception area of Rep. McCaul's office this is what you see! The Mattie Miracle Outstanding Legislative Award prominently displayed (which we gave Rep. McCaul at the symposium). We were thrilled to see this, and if Mattie could see his name on Capitol Hill, he would have gotten a kick out of this. Peter and I had a very good meeting with Andy, Rep. McCaul's legislative aide, and we are working on our legislative strategy for this coming year.

The beauty and complexity of lobbying on the Hill for mental health issues, are not  foreign to me. As a licensed mental health provider, I had numerous opportunities (prior to Mattie's cancer) to lobby on the Hill, and as such, I know that mental health issues are really the step child of the health care profession. Our profession is dictated by medicine and health insurance companies, both of which do not always understand or appreciate the complexities of the brain, emotions, and the impact of health and the environment on the psychological well being of an individual. Being armed with this knowledge, enables me to understand that what Mattie Miracle is lobbying for is beyond challenging. Because we are not only fighting a health care mindset which is challenged to support mental health services, but now we are trying to advocate for a VERY underserved population in our mental health community.... children with cancer. Nonetheless, being pleasantly persistent, telling our story, and bringing together great psychosocial research minds from around the Country gives credence to our advocacy. It is an uphill battle to get the attention of policy makers, who are very focused on what they perceive as more tangible help to the cancer battle (drugs to fight childhood cancer). Yet as I said today, in 20 years, one new drug has been FDA approved for childhood cancer, and therefore history seems to indicate that new drugs are NOT coming to us any time soon. In the mean time, we have families and children trying to manage and cope with real world psychological issues from the treatment that last into survivorship or that impact bereaved families. Such issues are depression, fear, anxiety, PTSD, self-esteem, substance abuse, eating disorders, and isolation just to name a few. Whether new drugs are found today or decades from now, the prevalance of psychosocial cancer issues will remain ever present. These issues if left uncheck and not handled effectively will result in a large drain to our health care system not to mention will affect the overall quality of a person and family's life.

As I said to Andy today, passing legislation to give drug companies incentives to create drugs to target childhood cancer is fine, but ultimately this won't help people like Peter or I, and the thousands of others parents who are actively fighting the battle now, or who have lost the battle and are trying to find a purpose for living once their child is gone. The funny part, is attending a lobbying session with Peter and I, is like taking a step back to the 1960s TV show, Star Trek. Peter is Captain Kirk, level headed, decisive, and can streamline conversations and topics, and I am truly like Dr. McCoy ("Bones"). I am driven by emotions and passion for the subject, so I can easily get animated about a topic and by the time I finish with you, it is hard to fight what I am saying, because you can feel the energy I have behind it. So in that sense, we are the perfect lobbying team, in other words we are.... good cop, bad cop!

In last night's posting I shared with you 12 of our track posters that we had on display at this year's Foundation Walk. These posters in my opinion made this event a very special and unique experience. Why? Because the posters captured the words, feelings, thoughts, and pictures of those battling and surviving  childhood cancer. For it is the children and families living with childhood cancer that we walk to ultimately support. The posters served as a subtle reminder of our mission, which is crucial from my perspective as a Foundation leader. I feel responsible for bringing awareness to this issue and giving families an outlet to be heard and seen. As a result, the posters helped to make this a Walk with a purpose!

As you can see, along the track, walkers had to pass by these posters.

At some point, along the Walk journey, attendees stopped and read the posters.

It is wonderful to see people of all ages engaged in reading the posters.

The little girl in this picture is Bethie. This is my friend, Junko's daughter. Bethie was checking out and absorbing the posters along her walk.

More poster observers!

These two girls stopped to read the poem about family posted on the Johnson Family poster.

The posters attracted people of all ages and genders. As you can see these two boys paired up to check out the posters and clearly were chatting about what they were seeing. I sense that based on the fact that Ryan was pointing to something on the poster.

A close up of Andrew and Ryan examining a track poster.

A new activity addition to the walk this year was a 30 minute Zumba class taught by my instructor, Jenny. Jenny's daughter and Mattie were in the same kindergarten class together, so we have known each other for a while. It was Jenny's idea to host a free class at the Walk, and I loved the idea. Several Walk attendees emailed me after the event was over to let me know that they felt great community spirit while watching the zumba session!

I participated in the zumba session at the Walk and behind me stood several football players from the St. Stephen's and St. Agnes School team. These guys were real sports and very good natured. After all, they did not have to participate and stay for the entire 30 minute session. However, I have to tell you that their commentary was a RIOT! As football players they are used to exercising, getting into condition, moving around, and playing hard. But zumba requires all sorts of skills and stamina, and after about 5 minutes, they were getting tired. I have to tell you, they truly cracked me up and listening to them throughout the session made the whole experience FUN! It also made me see that I am getting great weekly exercise, because if they were winded, and I was feeling fine, then this is a good sign to me.

We also were lucky enough to have several members of the St. Stephen's and St. Agnes School's Service Learning Club, not only volunteer at our event, but participate in the zumba session.

Our photographers captured my mom, me, and Maya doing zumba together. As my faithful readers know, Maya was a close buddy of Mattie's at the Hospital. In fact, Maya was the only child close to Mattie's age who he would associate with at the Hospital. So Maya was and will always be special to us. Maya has attended EVERY single Foundation walk, and as you can see she was wearing her t-shirt from last year's Walk!

Tuesday, June 19, 2012

Tuesday, June 19, 2012 -- Mattie died 145 weeks ago today.

Tonight's picture was taken in May of 2006, as we were leaving Sesame Street Place. As I mentioned in last night's blog posting, we bought Mattie one Elmo balloon, and then a character in the park gave him another one for free. Needless to say Mattie was thrilled, since he was a BIG ELMO fan! Mattie had a full day at the park, and by the time we were getting ready to leave, Mattie needed to be carried out.


Quote of the day: Mountains cannot be surmounted except by winding paths. ~ Johann Wolfgang Von Goethe


I received the article below, entitled, The gentle art of condolences, from my friend Charlie today. The article was written by a professional who typically writes about humor, arts, and entertainment. However, this article is more personal, since it is her reflections on the loss of her husband. What particularly caught my attention is the list of phrases people said to her which need to be re-thought and phrases she found that were helpful. These are things I feel so many of us hear regardless of the type of loss. Needless to say, I appreciate these types of articles and insights from those who are grieving, because what it indicates to me is that we, as a society are not well versed in managing and coping with grief, and the ultimate truth about grief is it remains with you forever (it may change shape and form, but there is no stop date, in which you will wake up one morning and feel fine about the loss of a spouse, parent, family member, close friend, and child). For those of you who would like to read the article it is below. Otherwise, my blog continues after the article.

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The Gentle Art of Condolences by Marnie Winston-Macauley

Jewlarious writer Marnie Macauley grieves for the loss of her beloved husband, and thanks those who have comforted her.

Editor’s note: Jewlarious is of course aish.com’s Jewish humor, arts and entertainment section, and while this article fits into none of those categories, it is written by our dear friend and writer Marnie Macauley about the loss of her husband. Because she has such a strong following on our site, we felt it important to share this piece with you.

As some of you know, my husband of 33 years, Ian T. Macauley died in my arms on June 3, after suffering a stroke ten months ago. Judaism is exceptionally wise in the handling of grief. Our religion understands with rachmones (mercy), the need for support, for people, for mourning. And, for God. Sadly we knew few people in this crazy town of Las Vegas, so our Simon and I are pretty much on our own. I miss the platters (especially the lox – salty). I miss the company, the diversion.

I miss Ian. He’d be so ticked off that he won’t be able to follow the presidential election, taking notes on reportorial errors, and screaming at the T.V. (he was a lifelong old guard news editor). So, in grief, we Jews do special things, but turn as well to what we’ve always done. I’m a writer. I write. I’m a clinician. I heal – well others.

As a therapist, I’ve always felt that in addition to our spiritual and religious beliefs, there are human issues. And that, despite all the psychobabble, we grieve differently, in our own way, in our own time. And that must be understood, and respected. For example … while at vigil by his side, I took a few breaks outdoors, needing to feel the sun on my face … the promise of a new day. I knew I had entered the hospital as a wife … and would be leaving as a widow.

Most loathe the word “widow.” I am not a spider.

I’ve spoken to many friends whose mates have died, and it seems we feel the same way. Most loathe the word. “Widow.” Widows are spiders, black widows, Queen Victoria in perpetual black, shrouded mourning. A dear cousin told me simply: “We’re not widows. We are/were wives. And that shall always be – us.” This helped.

So I write … I can’t yet write of the 10 months of horror, politics, lousy medicine, and lost/afraid friends, but also of new remarkable ones. But I can talk of what helps and what doesn’t – at least to most of us, and especially this quirky “widow.” All texts, emails, and letters have been so welcome. All were meant with good intent, but some were more helpful … and others less so.

Phrases, said with love – That Should Probably be Re-thought:

• “If only he’d exercised, ate healthy, and taken better care of himself.” As a clinician, I recognize the anger, frustration, and self-fear in these words, and forgive. As a “widow” – shut up. “What ifs” are meant to move the living forward, not to guilt the grieving over what can’t be and won’t be.
• “Why didn’t you: a) give him 10,000 units of Vitamin C; b) treat him with canned asparagus; c) go to the alternative doctor I recommended four months ago?” What can you say? “Because I’m a lousy wife who denied him ‘cures’-by-idiots?”
• “We saw the signs. If he’d come to us two weeks earlier, we could have done something.” And you kept quiet? Write a paper for the AMA on clues, and how not to alert the spouse of the sick and dying.
• “You knew it was coming. You were at least prepared.” Not really. I kept the light on near the phone, killing myself to grab it. Even in the inevitable, an irrational ray of hope remains within us.
• You made it through the horror, now you’re free … run like the wind.” Or, from the less poetic, “Get right up on that horse again.” Walking, running, horses? What am I a jockey? We’re working on breathing from one moment to the next, not Nikes and saddles.
• “At least he’s no longer suffering and at peace in a better place.” Is he? I pray so. But a better place to us was with us. Life was always “I” and “M” and “S.” Now there’s no “I” – and no scorecard for death of a partner, a father, a cheerleader of 33 years. We have to learn how to write Chapter Two.

Phrases That Help:

• “As said above, “Your not a widow … you are, and always will be a wife.”
• “He leaves behind a powerful legacy and made a difference.”
• “I was privileged to know and work with him.”
• “Take each day at a time — slowly.” (From a widow.)
• “What an amazing love you shared.”
• “The older we get the more we realize we don't know. We're grateful every day for what we have and keep putting one foot in front of the other. Hold your son, Simon, close and hold yourself as well. As you start the next chapter of your life, deep breaths, one foot in front of the next.” A realistic wish, with accounting, and hope.
• And finally … “How can I/we help?”

Yes, we all grieve uniquely. For this “widow,” the most helpful words aren’t those describing what could’ve, should’ve, might’ve been, but what was and will always be. As a writer and editor, my husband would agree. I don’t make “saints” of we humans – even after death. No. I reach for the best of truth, balance, and peace among the living; those who knew and loved him; those whose lives he informed, and thereby enriched. And the most helpful messages are those that simply acknowledge these thoughts, and allow the living, with apologies to Dylan Thomas, “to go gently into that next good day.”

Dedicated to the ever-lasting memory of my husband, Ian T. Macauley, father, grandfather, and brilliant journalist.

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I decided to walk this morning around my neighborhood. I eventually made my way through the grounds of the George Washington University. I spent many days traversing that campus while getting my doctorate, and even when Mattie was a baby, we would stroll through the campus, and examine their plantings and fountains. I can't look at the fountain on campus without thinking of Mattie. I sat by that fountain today, got some fresh air, and read a book for about an hour. When I decided to get up and leave, right by my foot was a worn out penny. It is possible that others who passed this penny missed it because it was so worn down, but it caught my attention immediately, and I naturally thought of Mattie. To me this was a sign that Mattie was with me today on my journey on campus. As my faithful readers know, Mattie had a thing about pennies, because my parents introduced him to their made up character, the penny fairy. So now, when we spot pennies on the street, we can't help but feel this is a Mattie symbol and connection. Naturally I always pick up the pennies I see, because this was something Mattie would have done.

My friend Junko, works near where I live, so today we met for lunch. We had a lot to catch up on and share. Junko is in charge of coordinating our Foundation Walk volunteers, which is no easy undertaking, especially as the number of activities increase at the event. Thanks to Junko, who organized all our name tags and badges and handed them over to me today, this portion of our Walk has now been closed out. Believe it or not, I am still completing Walk paper work, and based on the fact that I have been ill for a while, I am behind on these things. But slowly yet surely they too will get completed.

Tonight, I would like to share some pictures I took of a very special component of our Walk. This year's Walk theme was love of family. At our Walk ceremony we had the Eichner family speak about their cancer journey, which I will highlight soon. However, I felt it was important that attendees understood what they were walking for and why they were there. Certainly they come to our event to have a wonderful day full of activities, but the activities serve a purpose. The purpose is to bring awareness to the daily battles children and their families fight each day, as they live with childhood cancer. Childhood cancer is as much a physical illness as it is a psychological one. The treatment is only a small component of the battle, but the ramifications of the treatment and the impact it and the disease have on one's life are real mental health concerns.

Thanks to Linda Kim, Mattie's childlife specialist, she helped me execute my plan for this year's track posters. My goal was to enable 12 families living with childhood cancer to illustrate for us through a poster board display what love of family meant for them as they battle cancer and survivorship. Tomorrow night I will show you how these posters were actually displayed at the event, but tonight, I want you to see the beautiful content, thought, and feelings expressed through these works of art. I think one thing is quite clear from these posters and that is childhood cancer is an equal opportunity disease. It affects boys and girls, all cultures and races, and love of family is crucial for survival. It is my hope that you enjoy these posters and appreciate the care, thought, and love that went into them.

Imagine walking on a track, and as you walk, this is the first poster you see.

This poster was created by the Park Family. The way Jaycee describes herself is captivating. I particularly relate to her description of being made of recycled parts, but in reality as you can see, this is only a small part of who she is because her spirit comes shining through in this poem.

Jean Baptiste Family -- I would like to share the incredibly moving poem with you that was written by Marie (the poem is shown in the left hand lower corner of the poster). Marie puts things into perspective for her reader, because despite all she is going through, she considers herself lucky. Seems to me that every teenager and child needs to read Marie's poem. The poem is entitled, Luck (Nia).... I'm lucky to have family to go through this with. I get letters and cards and calls. I'm lucky to have my mom. Even when she has a cold. Or weather's bad. She comes here to comfort me. Her car is sometimes messed up. In bad weather, it moves a little too much. I tell her what's going on. She tells me jokes. Sometimes she does her homework. She'll get me frosted flakes, pizza. I'm lucky to have my sister in New York. She comes down and stays with me in the hospital when my mom can't. We hang out. She gives me advice about being patient, thinking positive. I'm lucky to have my grandma. She's moving here at Thanksgiving and bringing my cat Oreo. I'm lucky to be able to see my dad in Haiti. Two months after the earthquake I actually met my father for the first time. He was okay and living good. I saw a lot of dust, people on the street begging for food. His house is on a hill and I could see the camp where most people were living. He took me on a road trip to the other side of Haiti. We stayed in a hotel, went to the beautiful beach, ate fish. He gave me his slippers to take home. He calls me. I am lucky.

Kilpatrick Family -- This painting was created by Morgan. When Mattie was battling cancer, so was Morgan. Morgan is now a leukemia survivor, but while she was battling cancer she was only a BABY. She is now a preschooler! This painting means a lot to us as does the fact that her family continues to remember Mattie!

Altayer Family -- Along with the beautiful family photos and hand prints you also see several Arabic words. Under each word is a translation. The words mean..................  Father, Love, Mother, Baby, Sister, and Family.

Kress Family -- Here you can see a hand drawn picture of Peter's family and then an actual photo.

Bostic Family -- I love this painting, and I assume the marker shapes within the painting represent each member of Kedar's family.

Sullivan Family -- On our various trips to the hospital this year, especially with the girl scout troop, we have had the opportunity to meet Destinee. She is a sweet little girl, full of life, but clearly like Mattie, spends a great deal of time in the hospital for treatment. Yet despite that, you can see her wonderful smile and the love she has for her family.

The Clayton Family -- This poster speaks out FUN to me. This family has fun together and this fun is captured in activities and symbols listed all over the poster.

Ramirez Family -- As Marisol indicates in her drawing, "family is home!" How beautifully stated!

Eichner Family -- This family attended our Walk and were our guest speakers. Danielle (a leukemia cancer survivor, with the red hat in the picture), her mom Marilyn, and brother Wade all addressed our attendees and expressed their insights about battling childhood cancer and the role of a family in this battle.

Abid Family -- Bridget is a Hotchkins Lymphoma survivor and battled and continues to battle cancer today! We met Bridget and her wonderful family when Mattie was undergoing treatment. Through our experiences we remain connected always. Bridget, as you can see, is VERY artistic. Like Mattie, she loves origami cranes and made several for this poster and glued them onto it. In addition to the pictures, there are wonderful hand written notes from family all over this poster to Bridget and each immediate family member signed the poster. Bridget and her family attended our Walk!

Johnson Family -- This last poster was created by our friend Toni, Brandon's (Mattie's big buddy), mom. As you can see there are TWO beautiful butterflies on this poster, both of which symbolize Mattie's connection to the Johnson Family. In addition, Toni attached a beautiful poem about family which I blew up below for you to read. Toni and her family have attended EVERY Walk of ours, even the Mattie March in 2009! We value their support and love.

Monday, June 18, 2012

Monday, June 18, 2012

Tonight's picture was taken in May of 2006, at Sesame Street Place in Pennsylvania. We took Mattie there for Memorial Day weekend, and he absolutely LOVED the park. Mattie was a HUGE Elmo fan, and literally left the park with an Elmo balloon we bought him, and then another huge Elmo balloon that one of the characters decided to give him for free. The park was a great experience for us since it wasn't crowded, it had just opened up for the season, and therefore everything was pristine. We also saw an amazing Memorial Day parade at the park, filled with military personnel in their regalia. Mattie also loved hearing the parade's patriotic music and watching his favorite characters walking by and waving.

Quote of the day: The outward man is the swinging door; the inner man is the still hinge. ~ Meister Eckhart

My dad sent me tonight's quote, and I must admit I had to read it several times to get it. Or at least get my interpretation of it. I think our outer shell as human beings evolves, changes, and of course weathers over time. In fact, so many things can impact our facade and throw it off balance. Yet despite everything that comes in and out of our lives, at the inner core, our personality and who we are remains stable and solid. In essence our inner self guides us during both the good times and bad and keeps us grounded or swinging in the right direction. Just like a hinge, our inner being may allow certain things into our hearts and minds to greatly affect our lives, and yet for some things we may find the hinge almost rusted out, making things impenetrable. I find the notion of grief, particularly grief associated with the loss of a child, to be one of those hinges in life. For some people, allowing the words and feelings associated with grief to swing into their lives so that they can absorb the feelings and thoughts of another's pain is possible. Not easy, but possible. For others, this hinge is closed, or not well oiled. Our United States culture breeds and almost rewards a rusted hinge as it relates to processing sadness, loss, and grief. These are taboo issues, or at least issues that are expected to be resolved or disappear in weeks, and certainly by a year. After all, grief for example is not talked about at work or with friends for the most part. It is a subject that is frowned upon, or a conversation stopper. However, if you examine other cultures around the world, they are far more progressive, and holistic to their understanding of loss and grief. Loss becomes an integral part of one's life forever, and friends, family, and communities acknowledge this loss in more open ways. I urge you all to oil your loss hinges, because from my perspective the number one way to help a friend or family member cope with loss is to allow that person to reminiscence, to talk and reflect freely, and to be present within their lives.  

This morning Peter and I had a conference call with Brett, our lobbyist at Mercury. Brett has worked with us for two years now, all probono. When he signed on to help us, we thought it was only for a year, but Brett is in this for the long haul. His call today, was to get an update on our events, to talk about next steps, plans for next year, and in essence a pep talk. I am not sure how Brett knows exactly when these talks are needed, but it was very appreciated today.

Below you will find more pictures from the Foundation's Walk.

Greeting our attendees that day, was a large poster indicating our Walk sponsors and the over 40 organizations who contributed to our Walk Raffle.

This year, thanks to ABC Imaging (http://www.abcimaging.com/), the Foundation put together some promotional signs that discussed our mission, objectives, and our Foundation Accomplishments. The last sign, shows a visual of our accomplishments with pictures from our year's events!

Though this is a family fun day, we feel the need to provide awareness and education. As you can see here, we displayed our research posters for attendees to read if they should want childhood cancer facts.

Inside the Foundation tent is always a table which captures Mattie's memory and spirit. If you look closely on the table, our friends Toni and Brandon (Mattie's big buddy) left a beautiful bouquet of pink roses near Mattie's things!

This is Margaret and Susan. They help run our Foundation table at the Walk. Margaret is our friend and Mattie's preschool teacher, and Susan is my friend and a former student of mine.

This is Karen and Tina. They were working in the Foundation Tent, and also worked with me for three hours before the event started setting up tables, covering them, and helping with overall logistics.

The photographer caught some priceless shots at the registration tables. This is Gabe, who attended the  Walk with his parents. Gabe lost his sister to cancer. His smile to me is captivating, because to me it showed his anticipation of having fun.

Our Walk Raffle is a significant component at our event. It is housed under its own tent. This year we featured 13 different raffle items!

I love this picture because it features a mom and baby sitting with each other as they fill out raffle tickets. The raffle actually generates a great deal of excitement, and thanks to technology, a great deal of raffle tickets were also purchased on line this year.

Ann is our raffle ticket winner caller, and each year she has family, friends of Mattie, and children draw tickets out of each raffle box to select the winner.

As you can see here, this is an example of one of our thrilled winners. Annie won the American Girl raffle basket and was beaming with excitement. You can almost sense it from seeing this picture.

Standing next to Ann are several of Mattie's buddies, Abbie (Ann's youngest daughter), and Abby and Emily (my friend Mary's children).

I would like to end tonight's posting with a message I received today from my friend and colleague Nancy. Nancy wrote, "I wanted to write yesterday and after reading Friday’s blog, I am ashamed to say that I was unsure of what to say to both of you. I knew that yesterday would be difficult and I wanted to be supportive, yet, felt unsure of how to say what was in my heart. I give Virginia my gratitude for writing such a beautiful tribute to Peter. In it she captures so many qualities that highlight the Brown family. I am glad that I’ve gotten to know Peter. For to know Peter is to know a gentle heart and soul which encompasses a strength that only few can accomplish. Peter and you have shown such a positive face to your readers and then you give us a dose of what life is truly like for the two of you. I think that is what made the article that Charlie sent this week so impacting on me. Grief is such a strong feeling, a personal one which many try to push aside as it just hurts too much. What you have accomplished in these last years was monumental and life saving, even though, it came at a great price to your family. Reading the blog this weekend was a great reminder of the power of love and support. I applaud both of you on your accomplishments! I am humbled by the truthfulness of your sharing and essence of your humanity. You add to the world. You are unsung heroes to those who know you."

Sunday, June 17, 2012

Sunday, June 17, 2012

Tonight's picture was taken in May of 2007 at Dutch Wonderland. We all went on a train ride around the amusement park, and I snapped a picture of Mattie and Peter together. Mattie was excited about going to the park, and therefore, we got up at the crack of dawn, and were one of the first families into the park that day. We literally covered every inch of the park, and as you can see Mattie's smile showed his happiness about his day's adventure. 


Quote of the day: One person caring about another represents life's greatest value. ~ Jim Rohn



Today was not the best day for either Peter or I. The irony is I was in an absolutely foul mood, and therefore this only set Peter off further. We woke up at 6am today to attend a local childhood cancer organization's annual fundraiser. The Fundraiser was hosted by Just Tryan It, and the event entailed a triathlon in which healthy children swim, bike, and run on a timed course to raise money for children battling cancer. All proceeds from today's race go to Georgetown University Hospital. One of the racers today, ran on behalf of Mattie's memory, so we felt compelled to go and support Will and the works of Just Tryan It.

There were many disheartening aspects of the day that impacted me greatly and unlike my usual postings, these feelings, observations, and thoughts, I am not publicly sharing. Which is why when Peter opened up a Father's Day card from my parents this afternoon, and found a typed letter from my mom, I decided to share my mom's words on the blog instead of my own! My mom has me covered for tonight, which I appreciate it, because what I would want to write would not be appropriate, appreciated, or understood.

To all our readers who are fathers, we hope you had a good Father's Day, felt appreciated, and realize how important your role is and how lucky you are to have a child who is alive to care for and spend time with.

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Happy Father's Day Peter -- by Virginia R. Sardi

You deserve accolades for pioneering a special role as a father whose love and commitment to your son, Mattie, began even before the day he was born. From the moment you looked at his sonogram pictures given to you by Vicki's doctor, you were bonded to him forever and your attachment is as resilient and strong today as when he was alive through your faithful devotion to his memory as expressed in the good works you do on his behalf for children with cancer. When Mattie's bone cancer was diagnosed, you became a "cancer warrior" and gave yourself unconditionally to him so that he felt the safety of your presence and knew he was not alone in facing up to the battle against the cancer that was ravishing his body. You were and have always been his hero in times of trouble and your support then was the security blanket he needed to get through the long, hard fight ahead of him. Mattie gave it his all but bone cancer, his enemy, proved too virulent and unstoppable against the meager weapons of modern medicine. To say that this has left a powerful impression on you is an understatement for such an emotional crisis creates an upheaval in the very core of your being that must lead you to question life itself and what your role as a father should be after suffering the loss of your precious only son. It is against this background of pain and sorrow that Mattie Miracle was founded. The mission statement of Mattie Miracle bears witness to the awesome task confronted by you and Vicki as Mattie was transformed from a positive, outgoing, and happy child to a belligerent, angry, and moody one through no fault of his own as his behavior became a function of his response to invasive treatment for his aggressive cancer over a fourteen month period and the progressive deterioration of his body from the cancer itself. The psychological component of his illness grew ever more complex, could not be dismissed as inconsequential and required professional counseling to help him cope with the darkness that invaded every aspect of his psyche over time. Both you and Vicki absorbed it all and realized that little attention was being paid to the psychosocial deterioration that accompanied his decline. Together, you made this issue your cause and have already gained widespread public attention in promoting the importance of setting psychosocial standards in the treatment of childhood cancer accomplishing much in three years. Social upheaval leaves children with cancer lonely, unhappy, and depressed where once they were like other kids using their energies in carefree and happy pursuits. In Mattie's case there was to be no more playground antics with friends, no more riding his bicycle in your complex as if preparing for entry into the Grand Prix and no more soccer, a sport that he really liked that made him look so dashing in his colorful blue uniform. He was only six when he lost all that! You, as his Dad with infinite wisdom, capitalized on his passion for building, art and sculpting and created an alternate universe for him in his hospital confinement by allowing him to use his artistic and constructive talents in new and innovative ways. What a great father and son team you were as you successfully took on the challenges of the most intricate Legos projects the company had to offer and then went on to make all kinds of original creations that Mattie envisioned using his fertile imagination. Mattie's art left to your thoughtful guidance knew no bounds. It is with patience and love that you imparted this final gift of fatherhood to your beloved son.

If Mattie were here today he would say that you were the best and most caring father that any son ever had. I would add that your strength of character in times of turmoil and strife gave you the amazing grace to remain steadfast through the hard times that Mattie's deadly illness caused. It was an awesome relationship you had with Mattie and remarkably it all happened in only seven years. You have earned the esteem of all who know you for showing that a loving connection to a son is a lifetime commitment. Happy Father's Day! You've earned it!!!