MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 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 22, 2012

Saturday, September 22, 2012


Saturday, September 22, 2012

Tonight's picture was taken in April of 2009. Mattie's school counselor came to the hospital to visit him and gave him a present for his birthday. Mattie loved the singing hamster card and glorious butterfly balloon you see in this photo. I think we all fell in love with butterflies during Mattie's battle, and that love has only grown stronger since Mattie's death. As you look at this photo, I am reminded of all the decorating we did each time we were admitted to the Hospital. In Mattie's room it wasn't unusual to see things hanging from the ceiling, his IV pole, things attached to his walls, doors, and even his bed. It was certainly more cumbersome dragging these items with us back and forth from the hospital and home, but seeing non-medical things was vital for our mood and sanity, and I suspect it also enabled conversations between medical personnel and Mattie on certain days.


Quote of the day: The fact that I can plant a seed and it becomes a flower, share a bit of knowledge and it becomes another's, smile at someone and receive a smile in return, are to me continual spiritual exercises. ~ Leo Buscaglia


I began the day in a funk. I am not sure why, but there you have it. Peter and I sat outside on our deck for a while and had breakfast outside. While out there, Peter announced that today marked the 1110th day that Mattie has been gone from our lives. I count in weeks and Peter counts in days. As soon as Peter made that statement, literally a beautiful monarch butterfly flew over our heads. Almost on cue. I immediately asked Peter if he saw the butterfly and then told him I felt this was NO coincidence. Mattie was with us.

Buscaglia's quote intrigues me. I have to admit that if I smile at someone, that person usually smiles back at me. Almost as if smiling is contagious or perhaps we are conditioned that if we see a smile, something on an unconscious level takes over within us and we naturally smile. Have you ever noticed that when someone smiles this changes all aspects of a person's face and you have a better window into their eyes and feelings? Perhaps as Buscaglia indicates this is a spiritual exercise in which we smile to be further connected to those around us.  



Peter and I walked on Roosevelt Island today. As we were crossing the bridge to get onto the Island, I couldn't help but laugh at this sight. Paddle boarding is quite popular on the Potomac River, but I have never seen a person doing this with a dog aboard. Not a small dog, but a big golden retriever. This dog was so peaceful, wasn't making a move, and seemed to be checking out all the sights going passed them!
 

During each walk we take on the Island, Peter always snaps a picture from this vantage point. Basically as the seasons change we watch how this scene gets transformed.

I entitle this picture, "Mr. Mallard." I think this fellow caught my attention today because of his brilliantly orange webbed feet! He was looking at us, and we were looking at him. A mutual admiration.

September 21, 2012

Friday, September 21, 2012

Friday, September 21, 2012


Tonight's picture was taken in March of 2009. This photo captures some of the many antics that occurred in Mattie's hospital room. For the past several nights you have been introduced or for my faithful readers re-introduced to Meg (one of Mattie's amazing Child Life interns). However, before Meg began working at Georgetown, Mattie had the "dynamic duo," as my mom used to call them. Pictured in the chair with Mattie are Whitney and Lesley. Whitney and Lesley were/are indeed the "dynamic duo." They were Child Life Interns that related beautifully to Mattie and our entire family. In fact, these women are still part of our lives today, and when their internship ended at Georgetown it was a very sad day for all of us. Both Whitney and Lesley have beautiful smiles, are compassionate women, and truly tried to relate to our plight in the hospital. You may notice another cutie in the picture. The fellow attempting to come through the door is Brandon, Mattie's big buddy and a Lymphoma Cancer Survivor. At the time this picture was taken Brandon's treatment was complete, yet he continued to come back to the hospital to volunteer his time and to visit Mattie. In the scene you see here, Whitney, Lesley, and Mattie were trying to blockade the door to prevent Brandon from entering. They figured with all their weight, they could stop him. Naturally that wasn't possible, but it made Mattie laugh and forget his issues, feel alive, part of something normal, and most importantly it got him out of his bed, talking, and interacting with others. As Mattie's cancer battle progressed, his level of tolerance for people and noise decreased significantly. Some days I wasn't sure what was worse..... a cancer diagnosis, or a cancer diagnosis and being quarantined inside a two by four of a hospital room! 


Quote of the day: Somewhere we know that without silence words lose their meaning, that without listening speaking no longer heals, that without distance closeness cannot cure. ~ Henri Nouwen


One of the highlights of my day today was having lunch with my friend Christine. Christine's son, Campbell, and Mattie were very close friends in kindergarten. It was through their play, that Christine and I also had the opportunity to become close friends. It was one of those glorious weather days in DC today, and we were able to have lunch outside and catch up. While I was waiting for Christine to arrive at the table, I recognized a fellow mom and Mattie supporter at the restaurant. So we got up to hug each other, and at which point she pointed out that everyone dining around us were moms from Mattie's school. Naturally I did not know these women, since I haven't been a mom at the school since 2008. But I have to admit being surrounded by moms made me uneasy.

When Christine arrived, the other moms recognized her and so they began chatting with us. One mom asked if we came to lunch to celebrate anything today. My response was.... we are celebrating being able to get together and our friendship. With that this woman commented that it is a special time to be out and not have a child in the background shouting out "mom I need this, I want that....." Christine quickly stepped in on this, because frankly I wasn't in the mood to respond to that. The irony is this mom's comment wouldn't have bothered me in the least before July of 2008. In fact, I would have most likely related to her sentiments and laughed it off as one of the challenges of motherhood. Now however, my viewpoint is very skewed and tainted. What was once normal is NO longer normal or part of my life. When something has been taken away from you, you would be amazed how you long for it. So today's comment left me instead feeling like this woman is lucky to have a child not sick, not living in a hospital, or dying, and she doesn't even know it! Keep in mind I am not judging her in the least, because her comment is so appropriate for a circle of moms with healthy children. A circle I am NO longer a part of.

It is funny how time and our experiences can change us, sometimes for the better and sometimes for the worse. The test becomes what do we decide do with these experiences over time? I must say there is a battle that goes on within my head in any given day. The battle sometimes comes down to the simple notion of who will I be protecting today, myself or those around me? I do not mean physically protecting but emotionally protecting. The loss of a child is one of the biggest conversation stoppers I have come across, it immediately alienates people, people feel uncomfortable over the topic, and for some it is just easier to keep me at an arm's length. I am aware of this issue, and yet if I don't talk about Mattie, that provides great uneasiness for myself. Coping with the loss of Mattie in essence feels like living between a rock and a hard place.

September 20, 2012

Thursday, September 20, 2012

Thursday, September 20, 2012


Tonight's picture was taken in March of 2009. For the past three nights, I have shared with you pictures of Mattie and Meg (one of Mattie's amazing Child Life Interns) during several physical therapy sessions. The sessions were held in the hallway of the pediatric units and the goal was to get Mattie up and out of his wheelchair in order to use his legs. That sounds much easier than it actually was. Mattie was a victim in so many ways of medical trauma, and like any child his age, children do not live in the future, they live in the here and now. Mattie was afraid to walk and very afraid of the pain and further injuring himself. As adults we may get that we need to work through the pain and participate in physical therapy for future gain, but a child doesn't think in these terms. Therefore to inspire Mattie to do physical therapy required major distraction. Not atypical for children who are hospitalized! Children, believe it or not, do not respond to chatting about a procedure or a process. Research hasn't been shown this to decrease anxiety for children undergoing procedures. Instead children relate to doing and being busy. Meg definitely fulfilled that role for Mattie. Her antics kept him engaged and distracted, so instead of focusing on fear and pain, his main goal was to beat Meg at a walking race. Mattie ALWAYS won each race, and at the end of the race, Meg would give him an Olympic medal. As you can see in this picture, Meg was acting worn out, Anna (Mattie's physical therapist in blue scrubs) was clapping and Mattie looked elated to have earned two medals.


Quote of the day: The camera is an instrument that teaches people to see without a camera. ~ Dorothea Lange


Tonight's picture, as do many of my pictures of Mattie, illustrate the day to day struggles of fighting cancer. Certainly the medical care and treatment Mattie received was vital, but surviving and living with cancer means MUCH MORE than medicine. In fact, I would go onto say that the medicine and treatment compound the problem. Many of the treatments are toxic and have horrific side effects, which children must cope with and try to recover from between rounds of chemotherapy. Treatments leave children extremely tired, sick to their stomachs, with a low immunity (which therefore usually leads to being isolated from people and crowds in order to avoid illness), looking different physically (bald, change in skin tone, perhaps disabled, etc), and having a host of mental health issues. But here is the thing, in the midst of battling cancer and these treatments, it is NOT medicine that helps one manage the day to day living! Or in some cases the day to day horrors. If you doubt what I am saying, just ask any parent who has or had a child with cancer. If you don't know someone like myself, then just ask any parent who has ever had to spend time in the hospital with a child. What gets you through the day to day are PSYCHOSOCIAL SUPPORTS! These supports may look different depending upon what hospital you are seeking treatment. In Mattie's case his psychosocial support came in the form of Child Life, Art Therapy, and Social Work. Knowing this, having faced this reality, the nature of today's Summit set me off. The psychosocial concerns and needs of children and their families must ALWAYS be integrated into any dialogue related to childhood cancer.

Today I attended the 3rd Annual Childhood Cancer Summit hosted by the Congressional Childhood Cancer Caucus. In the book I am currently reading, I came across Dorothea Lange's quote. To me this quote captures my feelings regarding today's Summit. Why? Well when Mattie was born I became obsessed with my camera. It came with me everywhere because I wanted to capture Mattie's every move. All I can say is thankfully I did this, otherwise, I wouldn't have these beautiful keepsakes now. However, my ability to see through a camera was perfected over seven years of Mattie's life, but the beauty of taking pictures is that eventually you learn the art of capturing a scene. In fact, you can capture it in your mind so well that the actual technology of a camera may no longer be needed. Lange's quote is basically saying that the camera can be an excellent teacher, teaching us to be observant and absorb that which is around us. I indeed absorbed everything around me today at this Summit. Perhaps I absorbed it too much!!!

One of the downfalls of being a person who absorbs a scene, is that I am good at assessing the nuances, the political aspects of things, and the agendas of others. Politics and agendas are all part of human nature, but I get quite disappointed when I see this behavior within the childhood cancer community. Today's Summit focused upon the pharmaceutical treatments of cancer and the Creating Hope Act that was signed by the President to give drug companies incentives for creating medicines to combat childhood cancer. This is wonderful in theory, but the problem is far greater than establishing incentives for drug companies. Childhood cancer is complex, there are so many different forms of the disease, and furthermore the number of pediatric patients available to test new drugs on is so small compared to our adult cancer population. Which is why creating new drugs for children is a daunting endeavor and explains why the majority of children are treated today with drugs which are 30 years old or older, drugs which were designed initially for adult use.

There were many other issues that arose for me in today's presentation which I am not going to discuss in detail, but I do have two comments. First, presenting childhood cancer in a theoretical and dry manner to me doesn't work, especially when you have people in the room deeply impacted by this disease. For us, we aren't talking theory, we are talking reality. Cancer changed our lives. In fact at the end of the session, I went up to one researcher and told him that the statistic he shared in which there is an 80% survival rate for childhood cancer brings me NO peace of mind. Especially since Mattie fell within the 20%. As a counselor educator by nature, I believe first and foremost it is crucial to know who your audience is!!!! The second issue that stunned me, is if you are going to acknowledge the names of a couple of children who died from cancer in the audience then identify ALL of them. I don't care if you mention our Foundation or not, but my child's loss is just as significant as anyone else's!



After this two hour ordeal, I can say that my highlight was connecting with my friend Annie. Annie and I met at least two years ago during a Curesearch event. We met during training and then lobbied together on the Hill. Annie lost her daughter Eloise to Rhabdomyosarcoma, about 8 months after Mattie's death. Annie does wonderful work to raise funds and awareness for childhood cancer, and I hold dear the gift she gave me about a year ago. She created beautiful tote bags that capture the spirit of Eloise. I call my bag, "an Eloise bag" and use it all the time, and though I did not know Eloise, I feel I know a part of her through her art work. The weather was beautiful today, and literally Annie and I ate outside on Capitol Hill and had a ton to chat about. Fortunately Annie was sitting next to me at the Summit because we had a debriefing with each other and I told her if she wasn't there for me to honestly talk to, I would most likely have left the event feeling guilty and determining something was wrong with me. But here is the thing, Annie and I are part of the club we did not ask to be a part of, and as club members, we unfortunately tend to interpret, absorb, and feel similar things. Before we left lunch, I had our waitress take a picture of us. What I "see" in this photo is appreciation and gratitude between friends and moms.

September 19, 2012

Wednesday, September 19, 2012

Wednesday, September 19, 2012


Tonight's picture was taken in May of 2009. This picture captures the antics of Mattie's physical therapy sessions! The three women you see in this photo were all on the same page about designing physical therapy sessions that motivated Mattie, encouraged him, and inspired him to use his legs. In the photo with Mattie is Linda (Mattie's Child Life Specialist), Anna (in purple, Mattie's physical therapist), and Meg (in white, Mattie's Child Life intern). As I mentioned last night, Meg was key to our therapy sessions. What was transpiring here was Meg was winning the race, and Anna wasn't going to let Meg beat Mattie, so Anna literally jumped in front of Meg and tried to knock her down. Honestly Mattie's sessions were better than watching TV, the dynamics were real, full of life, and with the good intentions of helping Mattie. That was always paramount. Walking for Mattie was VERY, VERY difficult and painful. He got easily winded, easily frightened to move, and could easily get depressed and shut down. Which was why these antics became vital, they made Mattie temporarily forget his fears and instead focus on the goal of walking to beat Meg.


Quote of the day: What lies behind us and what lies before us are tiny matters compared to what lies within us. ~ Ralph Waldo Emerson


Some times I get into the kick of reading several books at the same time. This can be delightfully complicated at times, especially when books have multiple characters. Recently my friend and colleague, Denise, sent me a book. We had met over lunch a few weeks ago, and at lunch she was describing a book about a woman who unexpectedly lost her significant other. The way Denise described the book caught my attention, especially since the book is not about a woman who lost a child to cancer and it is not a "how to" book on grief, which drives me absolutely BONKERS! The book Denise sent me is entitled, This I know, Notes on unraveling the heart by Susannah Conway.

As Denise was describing this book to me, she mentioned that she saw similarities between the author (the book is an autobiography) and myself. As I am now reading it, I do see several connections. I am not sure if the connections are a result of our tragic loss, or whether Susannah Conway and I are both drawn to the beauty of art, words, and human connections. It is hard to say, but I do think we may have been predisposed to these forms of expression, and our losses just gave us a push. In one of the chapters I read today I came across a passage that 100% resonated with me. It was as if Susannah sat down and was analyzing why I write Mattie's blog. Here is an excerpt from the book:
 
It's a blessing to find writers whose words speak for us when we are mute, the scribes who record our collective experiences and mine their own lives so we can better understand ours. If your calling as an artist is to write, it's a vocation that pays out twice: first to you as the detective unraveling your heart and then again to the reader who consumes your work. We don't write to be published --though publication may come -- we write to make sense of the noise in our heads. We write to record memories and share what we know. We write to feel less alone, to confide our fears to the page. Imagine a world without love letters, without birthday cards and dedications. Our truthfulness can change a life -- if not someone else's then at least our own. In a world swirling with thousands of languages, there is space for everybody to tell their story. Photographs, paintings, and music carry the essence of our hearts, but it's the words that tell the secrets.

Each day I begin a blog posting with a quote. This gets at what Susannah describes as "writers whose words speak for us when we are mute." In fact there are some nights I sit at the computer, unsure of what to write. It is usually in those moments, that I turns to quotes, and it is through the words of others that I can get inspired. The quotes give words to the thoughts swirling in my head. As I have expressed before on the blog, I write each night for different reasons. The primary one is that the blog keeps Mattie's memory alive, and it has become my surrogate child in a way. Yet in the midst of my writing, as Susannah implies, I would like to hope that our words do change lives. Perhaps someone who is grieving is reading this blog and just for one moment says.... "yes, this person understands me, she gets it, and I am not the only one feeling this way." I would like to think that my pain and endless words each night are being heard and do make a difference to someone besides myself.

I went to see my friend Mary, who lives in an assisted living facility. Mary was thrilled to see me and had moments in which she could actually talk tonight. I haven't experienced this in a while, so this was a wonderful treat. Mary told me she has been thinking about me, and praying for me. Over dinner she asked me why our boys had to die, and what was God's plan? She was referring to Mattie, her son, her husband, her brother, and her cousin. It was an excellent question, one which I told her I had NO answer for, nor could I even fathom up a response. Because from where I am sitting, there is no better place for Mattie, other than with me. In fact, I have interacted with several other parents who have lost children, and most react the same way to the trite remark of "He is in a better place." Note to self, this platitude needs to be removed from the English language altogether! It brings NO peace to the bereaved!

Tomorrow, Mattie Miracle will be on Capitol Hill attending the annual Childhood Cancer Caucus in honor of childhood cancer awareness month. I am signing off for now and I hope to share with you my thoughts from the Caucus on Thursday.

September 18, 2012

Tuesday, September 18, 2012

Tuesday, September 18, 2012 -- Mattie died 158 weeks ago today.

Tonight's picture was taken in March of 2009. If this photo had a title, I would call it, "Meeting of the Minds!" Pictured with Mattie is Meg. Meg was Mattie's last Child Life Intern that he worked with. Meg and Mattie had many of the same traits and characteristics, which is why I suspect she was able to get under Mattie's skin and get him moving at times. Physical therapy was very challenging for Mattie, especially when we asked him to get out of his wheelchair and work his legs. I personally think Mattie's hesitation to participate was due to fear and pain. Not laziness or defiance. Any case, the number one way to get Mattie out of his chair and walking was to have a walking/racing competition with Meg. I will be displaying several Meg/Mattie pictures on the blog this week, so you can see the competition unfolding in the middle of the hospital floor. But the beauty of Meg, was she hammed up her part, and while she was "trying" to beat Mattie in the race, she NEVER did! Mattie always won, and he loved the competition, Meg's humor, and of course the attention he got in the process.


Quote of the day: Be not afraid of greatness. Some are born great, some achieve greatness, and some have greatness thrust upon ‘em. ~ William Shakespeare


When I reflect on tonight's quote, I almost wonder if Shakespeare had Mattie in mind when he said it. Clearly not, and yet it is so applicable to Mattie. In my opinion Mattie was born great, he achieved a greatness so many of us wish to achieve, and though I think his greatest would have blossomed over time (if he was given time!), greatness was indeed thrust upon him while battling cancer.

It was quite evident to me that Mattie was born different. I always felt this way, right from day one. Mattie was a force, he knew what he wanted, he knew how to get it, and was persistent and strong willed about EVERYTHING. For me, my "greatness" was thrust upon me the day Mattie was born. Mattie forced me immediately out of my comfort zone and I quickly learned parenting Mattie wasn't going to follow a textbook or guidebook. Mattie and I developed a very close bond for many reasons. At the core, our personalities were very much alike, we saw the world and people in similar ways, but even with all these commonalities, Mattie pushed me to think outside the box and to be a better person and parent.

The ultimate test we faced as a threesome was Mattie's cancer diagnosis. When I think of what Mattie had to endure (9 months of intense chemotherapy, two limb salvaging surgeries, experimental treatment for 8 months, a sternotomy, and cyberknife radiation) it is beyond overwhelming. I am sure the average adult would have been cowering in the corner, I know I would have been, and I also know that if I had to go through what Mattie endured, my life would not have been SO public. However, Mattie was six years old when diagnosed and he was a member of several school communities, all of whom were invaluable support networks for us. I understood these networks wanted to know how Mattie was doing, and I also thought it was important to keep these channels of communication open because eventually we thought Mattie would return to his school.

Though I think Team Mattie is comprised of special and talented people, I too think that Mattie's cancer thrust greatness upon them. After all, this team was comprised of two school communities, our work communities, and friends and family. Yet despite this diversity, everyone united over a common goal, and though Mattie isn't with us today, so many members of Team Mattie are still friends because of the greatness thrust upon them. At the end of the day, a day that marks 158 weeks without Mattie, I remember that we produced a child that achieved greatness in himself and others.
 

September 17, 2012

Monday, September 17, 2012

Monday, September 17, 2012

Tonight's picture was taken in January of 2009. Peter and I took Mattie to New York City to start an experimental treatment at Sloan Kettering. The day before the treatment began we took Mattie to the Empire State Building and rode up the elevator to the 102nd floor. It was a beautiful and clear day as you can see, and the building had little to no tourists that day which made getting around and accessing the elevators VERY easy. Mattie enjoyed his two visits to New York City. He seemed to love the yellow taxis, the actual hotel (which spoiled him, especially when they knew he was a cancer patient), the gifts Linda sent him from DC, and spending time with our New York friends.


Quote of the day: Appreciation is a wonderful thing: It makes what is excellent in others belong to us as well. ~ Voltaire


 
This weekend, my friend Tina sent me several pictures! Since Tina has been known to have butterflies land on her, I wasn't sure what this was a picture of at first. But as I looked closer, I realized Tina was at Mattie's memorial tree. Tina and her family went to Mattie's tree to decorate it in honor of Mattie's third anniversary. A beautiful gift to hear about and receive!
 
Tina bought these wonderful decorative butterflies at a floral supply store and then sprayed them with glow in the dark paint. So not only does Mattie's tree have all these wonderful butterflies on it, but in theory they glow at night! I look forward to driving passed Mattie's tree one night soon to see if I can find these butterflies.





This weekend, I had the opportunity to see the movie, Julie and Julia on TV. I was a big Julia Child fan growing up. One of the things I used to love to do on Friday evenings when I was a teen was talk on the phone with my friend Karen, as we both watched and critiqued Julia. Karen was at her home, and I was at mine, but we were connected by phone and Julia! We had a lot of fun observing this cooking show, watching what Julia dropped all over the kitchen, the way she was communicating with her audience and her love and almost affection for food!

As I watched the movie this weekend, it brought back many memories of me watching Julia Child as a teen! However, though the movie captured Julia Child's story of her start in the cooking profession, it also intertwined the story of Julie Powell. In the movie, Julie turned 30, felt directionless in life, she felt she never completed anything, and felt like she needed focus and wanted to become invested in something. Julie took on the challenge of cooking all 500+ recipes from Julia Child's first book in one year's time. Not only did she cook the recipes but she wrote about cooking, Julia, and her journey on a self-created blog. Julie would blog each and every night, not knowing who her audience was, whether they appreciated her writing or even related to what she was expressing.

The development of Julie's blog fascinated me. Naturally this story was embellished in a Hollywood movie studio, but putting that aside, I related to Julie, why she wrote a blog, what she got out of the blog, and how this blog made her feel connected to the world. Writing gave her meaning, she felt connected to something bigger than herself, and she felt that through her writing she was making a difference in other people's lives.

One begins writing a blog typically on one topic, for example, with Julie her blog focused upon cooking and my blog focuses upon Mattie's cancer battle and our journey with grief. Yet it is impossible to remain true to topic all the time. I feel it is impossible because as human beings we are multi-dimensional, so over time on this blog you have learned a lot about me, my family, and my close friends. The intention of the blog was not to necessarily cover all these dimensions, but because I do not live in a vacuum, I have found that Mattie's grief not only impacts Peter and I, but all of our family and friends, and the Team Mattie community. It is within this blog, that Team Mattie also remains alive and well. The point I am trying to make is in Julie's blog, though she wrote about cooking, she also wrote about her disappointment with herself, the issues she had with her husband, and other things that had nothing to do per se with cooking. Yet what was happening in her life was intertwined with Julie the cook. I relate to this component of the movie deeply, because I imagine for my faithful readers, you have become aware of my own cast of characters that play integral roles and parts in my life. Seeing the commonalities between myself and Julie fascinated me, we both started a blog for different reasons, but what we get out of blogging is several common threads.

I am aware of the fact that Julia Child was not enamored by Julie Powell's blog and felt that Julie was using Julia Child to make a name for herself. I certainly can't speak to this dynamic, but I can attest to the discipline, patience, commitment, energy, and love that goes into writing a blog each night. Just like Julie, when someone writes to me about how my writing has touched them or made a difference in their life, I too feel like I am receiving a very special gift. Certainly in the beginning of our grief process, I felt as if my readers wanted to hear from me, and truly relied on this communication. Since I felt others were relying on me, it forced me to function, to have to engage with the world (or a computer), and to tell my story. In essence the blog is another one of my lifeboats.

September 16, 2012

Sunday, September 16, 2012

Sunday, September 16, 2012


Tonight's picture was taken in March of 2009. We attended the Child Life art gallery exhibition at the Hospital, and Mattie was there to proudly display his LEGO creation depicting his version of an ideal hospital room. In addition to Mattie's design, he also developed an entire story line, including a whole cast of characters to explain the LEGO model on display. Linda put Mattie's story on a beautiful poster. I have a copy of this poster at home and I am honored to say that Mattie's story is still on display at Georgetown University Hospital even today!



Quote of the day: The journey of a thousand miles begins with one step. ~ Lao Tzu


Though I am sure Tzu's quote has nothing to do with grief and loss, the quote is SO applicable and fitting for the subject matter. When faced with a traumatic loss, the journey to adjustment and recovery is thousand miles, or maybe a million and one miles to be exact. Either case, it is whatever mileage one can walk in a lifetime.

As I mentioned previously on the blog, one of Mattie's wonderful Child Life  Interns recently lost her dad to a sudden heart attack. I am reminded of those initial days and weeks right after Mattie's death and know that one's grief journey can only be managed one day at a time, or "with one step." Seeing the bigger picture associated with loss, trying to figure out plans for the next month, can be beyond daunting. In fact, I would say that I still live my life one step at a time, and I get edgy when asked to make plans months ahead of time. When living under times of crisis, living in the present, in the here and now makes sense. It makes sense because in Mattie's case his treatment, his test results, and his prognosis were CONSTANTLY changing. Therefore, making plans was ludicrous. Of course, Mattie is no longer alive, and yet I still can't go back to my future oriented way of life. I am sure there are several reasons for this, but for now it is what it is. 

This afternoon, I had lunch with my former clinical supervisor. We haven't seen each other for a while, and over lunch we had a chance to catch up on each other's lives. Carla and I met at a restaurant called Black Market Bistro in Garrett Park, MD. In my opinion this restaurant is a best kept secret, tucked away in a charming area of Maryland. Within the neighborhood is a train track, and while we sat outside having lunch, trains passed us throughout the day, freight and passenger. That may sound nasty, but it actually wasn't intrusive, but rather nostalgic. Nostalgic because Garrett Park was in the 1890s, a train town with beautiful Victorian homes. While sitting there, you can almost imagine what life was like in more simpler times, times where there were no commercial planes, major highways, cell phones, and computers.

This was the kind of setting today Mattie would have absolutely LOVED. Going to restaurants with Mattie was a challenge, because he did not like to sit still, and eating wasn't on the top of his list. But he would have been intrigued by the trains, listening to their whistles, and being surrounded by a portion of Rock Creek Park. It is in everything I do, that I think of Mattie. The trains today reminded me of his joy for movement, his desire to understand the nature of locomotion, and his excitement over spotting a train. Whenever Mattie saw a train, even a Metro train, he would literally shout out.... "TRAIN, TRAIN, TRAIN!" With each train that passed today, all I could think about was..... train, train, train! I can sense Fall weather is upon us, which saddens me, but sitting outside today and experiencing the scenery and glimmers of sun were indeed special.