Mattie Miracle 9th Annual Walk & Family Festival -- Raised over $97,000

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: 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

Random Shots of Mattie, Family and Friends

July 5, 2012

Thursday, July 5, 2012

Thursday, July 5, 2012

Tonight's picture was taken in July of 2006. Peter and I took Mattie to the National Zoo. Specifically to the children's portion of the zoo, in which Mattie could meet and pet several of the animals. Mattie loved the horses, cows, chickens, and goats he met that day. But as you can see Mattie wasn't looking at the camera. This was how Mattie looked when he had it with my picture taking. He would zone out and go through the motions with me. Not unlike any of us at times! Nonetheless, I am happy I caught that expression on camera and can share this side of him with you.   

Quote of the day: When people outside the immediate family are encountered who do not allow... expressions of emotions and thoughts about deceased children, it creates a resentment that is difficult to control. Subsequently, the time comes when parents begin to separate themselves from insensitive and uncaring people in their environments who insist on keeping channels of communication closed. Many times a wedge is driven between those suffering the loss and very dear and close friends. We can refer to this as a "wedge of ignorance" --- ignorance about the great importance of open..... communication. ~ Ronald J. Knapp

I remember when I was in graduate school, studying to become a mental health professional, I learned that true grief work typically doesn't occur until after someone has mourned for two years. Naturally I think that most time constraints/frameworks are irrelevant now, now that I have a very intimate experience with a traumatic loss. However, I must admit that recently, I have entered a new stage in my grief journey. It is the point where I feel as if others do not understand me, and I find myself distancing myself with those who I feel create what tonight's quote aptly refers to as the "wedge of ignorance."

It is not unusual that when confronted with an unknown feeling, we turn to resources for an explanation or validation. Today for the first time, I opened up a book entitled, When the bough breaks; Forever after the death of a son or daughter. I suspect someone gave me this book, which was not an unusual occurrence, shortly after Mattie died. I am perplexed by the thinking of giving a bereaved parent a book on grief! As if some sort of magic is going to jump off of these black and white pages and into my heart and brain to make the pain of Mattie's death seem much more bearable. In fact, I learned early on, that I couldn't turn to books for support. I found most of them trite and they just did not speak to my feelings of loss. However, as I try to ponder my feelings now about friendships and how cancer has changed my social connections, I decided to open up this book today, which was written by Judith Bernstein, a psychologist who lost a son to cancer. What I discovered, is my feelings are not unusual, because many other parents who have lost children are also perplexed by the changes in their closest friendships.

In the introduction of Bernstein's book is this wonderful paragraph in which she quotes Catherine Sanders, a noted bereavement researcher. Sanders said, "Our culture has not been educated to acknowledge the length of time necessary to overcome a major loss. This lag of information adds to the burden on the bereaved because they themselves feel that they should have been back to normal long before this. As time goes by, social supports diminish because family and friends expect the bereaved to be over the grief in six months to a year rather than the three or four years that is generally required. Even researchers who are working in the arena of bereavement put time limits such as three or four years for grief to be overcome."

Bernstein goes on to say, "along with 'overcome,' the word recovery is often seen in association with grief. The premise of the current study is that grief, or any major trauma for that matter, is never overcome nor does recovery take place. The course of healing involves integrating the trauma, not overcoming it. There is a significant difference. To overcome suggests that you get past or get over the trauma and go on from where you left off. But that is not what happens. No one goes on from any major event in their lives without having that event change them psychologically in some way. The process of integration involves changes in the person's view of the world, in the way they relate to others, in their values, in spiritual feelings, and so forth. It's the difference between stepping over an obstacle and being rerouted by it."

However, what especially spoke to me today, was her chapter dedicated to social relationships. Bernstein goes on to say, "an orphan is a child without a parent. A widow or widower is a person who has lost a spouse. There is no word to identify to the outside world a parent who has lost a child. Perhaps the concept is too unthinkable. There are greater impediments to getting social support for bereaved parents than for other mourners. The biggest impediment is that other parents shy away from the living embodiment of their worst nightmare. If this nightmare happened to you, then it could happen to me. Besides not wanting to be reminded that such atrocities do happen, most people, even with the best of intentions, don't know what to say or do. Potential sources of support avoid the eerie and the awkward. Consequently, bereaved parents are often avoided and become victims of social ostracism. Some feel like lepers. In addition to feeling isolated, many mothers say they feel judged, as if people are telling them how they should be grieving, comparing them with some imagined standard of the proper pace of progressing through grief. If they have a good day, friends jump to the conclusion that the grief is over; if they have a bad day, they need a shrink." 

Bernstein's book helped me understand today that the issues I feel internally are NOT unique to me, nor is anything unusual about my feelings. The issues arise when I am confronted by those who truly do not or can not understand the magnitude of my loss. The only problem of course is "those" people represent the majority of our society, and I represent the minority. Fortunately of course, since I do not want others to experience the loss of their child. I may ask friends on occasion to visualize what their lives would be like if something happened to their children. I do this, not to upset them, or to wish this upon them, but simply as a way to empathize and put themselves in my shoes for a minute. Only the very rare can actually go there with me and try to visualize this. On bad days, I have been told that I need outside help. However, I recall a visit with Mattie's social worker, several months after Mattie's death. Mattie's social worker is a bereavement counselor by training, before she started working at Georgetown. In any case, I distinctly remember Denise saying to me one day.... "Vicki do you think you really need counseling, or are you responding to what your friends are telling you?!" Denise's comment is brilliant, and remains with me often. Because what she was subtly telling me is that considering my situation, I am coping with these terrible odds graciously, and the road of having lost my only child is and will be a roughly paved one. Others don't understand this road at times, they don't know how to help, and instead insist that more professional means are needed. Again, as Denise reminds me this is a reaction to the listener's level of discomfort and NOT necessarily with my actual thoughts and feelings that are being expressed.

I have come to many conclusions about Mattie's death on my own. But Bernstein's research verified several of my top three thoughts which are....

1) The loss of a child remains with a parent for a lifetime. There is NO recovery from this loss.

2) As time marches forward, friendships change, and a different form of isolation occurs. An isolation which in essence produces another form of loss.

3) The ultimate way to integrate the loss of this magnitude into one's life is through communication, sharing my story, feelings, and thoughts. Basically this means talking about Mattie, sharing memories, and remembering! Which is what I try to do each day through Mattie's blog.

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