Mattie Miracle 15th Anniversary Video

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

January 27, 2011

Thursday, January 27, 2011

Thursday, January 27, 2011

Tonight's picture was taken in August of 2003, at the Los Angeles County Zoo. Mattie was 16 months old, and by this point VERY much walking. Mattie loved going to the zoo, he loved animals, and he particularly loved the children's zoo because he could get in and amongst the animals, pet them, and feed them. That was Mattie's second trip to Los Angeles. His first trip across the country was when he was 11 months old. Mattie was a good traveler and seemed to like adventure. So much so that he wouldn't sleep through any part of the plane trips.


Quote of the day: Beauty is ever to the lonely mind a shadow fleeting; she is never plain. She is a visitor who leaves behind the gift of grief, the souvenir of pain. ~ Christopher Morley

Despite the snow in Washington, DC, I got out today to have lunch with my friend Junko. As many of my faithful readers know, Junko's son, Kazu, was Mattie's first friend at his elementary school. The boys met each other in summer camp prior to starting school in September of 2007. Kazu and Mattie had a lot in common, and shared similar interests. Over the course of that kindergarten year and then when Mattie was diagnosed with cancer, Junko and I had a chance to get to know each other quite well, even under the worst of circumstances. My readers may recall that Junko would visit me often in the hospital and bring me a wonderful lunch, a chocolate treat, and then would give me a neck and back massage. I recall many nurses and hospital staff watching our interactions, and coming over to thank Junko for taking care of me. Since I clearly needed A LOT of help! All her numerous acts of kindness make her a very special friend and person who still continues to support us. Needless to say, I very much appreciated my outing and the time to connect with a friend.

Tonight marks day THREE of which I will be discussing the article, Good News About Grief: As the nation mourns those killed in Tucson, a new look at the science of loss shows we're more resilient than we thought. This article was featured in Time magazine (January 24, 2011, pp. 42-46) and was written by Ruth Davis Konigsberg. I was thoroughly thrilled to receive the following email today from Dr. Joanne Cacciatore who is a licensed mental health professional in Sedona, AR., and specializes in counseling individuals who experience traumatic loss and grief. Joanne wrote, "I am profoundly, profoundly sorry. What a precious, beautiful boy. I wanted to share my response to the article, book, and what others are saying publicly: http://drjoanne.blogspot.com/
I hope it means something to you, as the death of a beloved child, like Mattie, is always traumatic and devastating."

Joanne and I communicated back and forth today by e-mail. You should know that we DO NOT know each other, and we never traded messages until today. She wrote to me because she was responding to my blog postings regarding the Time article. Joanne and I apparently have similar thoughts on this article, and I am so happy she shared them with me. I am also happy to tell you that the professionals in the grief and loss community are writing a response and directing it to Ruth Davis Konigsberg, the author of the Time article and the book, The Truth on Grief. I was thrilled to hear this! I understand Konigsberg's desire to explore the thinking and relevant treatment of grief, but it is my hope that her readers understand that she is NOT a clinician and she isn't writing the book based on her OWN grief experience. I think these two pieces of information are crucial, because either one would give her important insights into the nature and complexities of grief. Without either or both skills, she is simply a journalist, in my perspective, investigating a very complex and emotionally laden topic.

Before presenting myth number two tonight, I wanted to share Konigsberg's response to a recent question posed to her by Book Bench of The New Yorker. The question asked of her was: One thing that struck me while reading your book was your exploration on the grief one experiences with the loss of a spouse. How might losing a partner be different from, say, losing a child?

Konigsberg's response was, "Trying to predict how someone will react to loss can be problematic—so much depends on the circumstances, as well as the person’s temperament and how they handle trauma. Although people like my husband and I would imagine the loss of a child to be the hardest thing imaginable, one survey I found suggested that losing a spouse can be more destabilizing, and that at least when you lose a young child, you have your spouse to lean on. Another survey found that parents who lost an adult child were the most devastated, perhaps because they had become such a part of their lives. The conflicting findings illustrate the problem of trying to categorize certain losses as more difficult than others—there are simply too many other variables involved."

Frankly, part of the problem with this response is we are asking for "expert" advice from a NOVICE. She is quoting surveys of all things. Actually she might as well turn to one of her ELLE magazines and check the polls and surveys in there as well, because I am sure it would provide her with about the same accuracy of information as she expresses in this quote. If she honestly thinks that losing a child could potentially be less "destabilizing" than losing a spouse, then she has LOST me. Spouses for the most part are UNABLE to support each other through a child's death. It isn't possible, since both are grieving the loss and are paralyzed in thoughts and feelings at the same time. Perhaps she would have challenged this "survey" if she had the professional or personal insights into the issue! I felt it was important to share a portion of her interview with you because it provides further evidence as to why her book must be questioned.


Just like I have done the previous two nights, I will share with you Konigsberg's writing, and then give my commentary below. Here is the second myth presented in Konisgberg's Time magazine article.

========================================
Myth No. 2 Express It ; Don't Repress It

The American way of grief places great importance on the expression of your darkest emotions. "Anger is a necessary stage of the healing process..... (it) means you are progressing," Kubler-Ross wrote. This may sound good, but it's proving to be inaccurate: expressing negative emotions can actually prolong your distress. In a 2007 study of 66 people who had recently lost a spouse or child, those who did not express their negative emotions six months after their loss were less depressed and anxious and had fewer health complaints at 14 and 25 months than those who did express negative emotions. The study, which included a control group of nonbereaved participants and which was conducted by George Bonanno, a professor at Columbia University's Teachers College who specializes in the psychology of loss and trauma, suggests that tamping down or avoiding those feelings, known as "repressive coping," actually has a protective function.

A related myth is the "grief work hypothesis," which defines grief as a project that must be tackled in order to prevent psychological problems. This notion can be traced back to Freud, who wrote that the "work of mourning" was for the ego to detach itself from the deceased so that it could reattach itself to someone else. In the 1970s, Freud's definition of grief as work became the guiding metaphor for modern grief theory. But a 60-person study conducted by the husband and wife research team Wolfgang and Margaret Stroebe of Utrecht University found that widows who avoided confronting their loss were not any more depressed than widows who "worked through" their grief. As to the importance of giving grief a voice, several other studies done by the Stroebes indicated that talking or writing about the death of a spouse did not help people adjust to that loss any better.

This seems to hold true for other traumatic events, like the terrorist attacks of September 11, 2001. In a study published in the Journal of Consulting and Clinical Psychology in 2008, more than 2,000 people were given the chance to express their reactions to the immediate aftermath of 9/11 and were then followed for the next two years. Contrary to popular belief, people who did not express their initial reactions showed fewer signs of distress later on, while people who did express their reactions had a harder time adjusting.
============================================

Out of her FIVE myths she presents in her article, this one may be one of my favorites. She might as well have written that the whole field of mental health is worthless, because a large component of our theories, techniques, and prognosis for recovery centers on the ability to verbalize, process, and learn from one's thoughts and feelings. Since she clearly is making a case for the powers of repression over expression, this is sending a direct message to mental health professionals. Just so I know my readers are all on the same page, repression is a concept derived from part of Sigmund Freud's psychoanalytic theory. Since Freud's work in psychoanalysis, repression is now accepted as a defense mechanism. A mechanism that helps us cope during times of stress and trauma. In other words, repression means to exclude desires, impulses, and memories from consciousness.

If I learned nothing else in graduate school, I most definitely know that grief work is about REMEMBERING never forgetting. You can't remember unless you express how you are feeling in some way! This is NOT just a cute slogan, this is substantiated in the research and has clinical significance as well. So Konigsberg has already broken the key component to grief work, by making a very sloppy case for the healing powers of regression over expression on the rocky road to grief recovery. I say sloppy because this afternoon, I ventured on my University's database system and searched for both of the empircal studies she so conveniently breezes over in myth two.

In her first paragraph of myth two, she referred to the following study. I have attached the reference for those of you who may want to read it. Karin G. Coifman, K.G., Bonanno, G.A., Ray, R.D., & Gross, J.J. (2007). Does Repressive Coping Promote Resilience? Affective–Autonomic Response Discrepancy During Bereavement. Journal of Personality and Social Psychology, 92 (4), 745-758.

After reading Coifman et al.'s (2007) article, I can say that caution is needed before leaping to the conclusion that "repressive coping" predicted fewer psychological symptoms (depression, anxiety, and PTSD). What you can't tell from the Time article, was how this study was conducted. You can only tell the conclusion that Konigsberg wants you to draw. Which is why I had to find and read the article for myself. In the study ONLY 60 participants were assessed, that is a VERY small sample size. Also note that data was collected from the following sources: 1) from friends of the participants, 2) through self-reporting, and 3) the best yet through skin conductance response (SCR). SCR is a method of measuring the electrical conductance of the skin, which varies with its moisture level. This is of interest because the sweat glands are controlled by the sympathetic nervous system, so skin conductance is used as an indication of psychological or physiological arousal. People who are "repressors" tend to experience relatively little distress but at the same time exhibit elevated levels of arousal. However, the researchers acknowledge the limitations of their study, since they weren't sure how accurate the SCR was for measuring arousal. Therefore, if this is one of the basic measures they were using to determine who is a "repressor," I see a problem right off the bat. I am not a baseball fan, but the terminology Strike ONE seems fair! If you can't classify a repressor accurately based on the physiological arousal technique used, then how can you possibly link a person, who may be falsely identified as a repressor, as coping with grief more effectively?

In addition, I really question how someone who represses feelings, memories, and thoughts around a loss can accurately self-report and complete "grief and health processing" measures/questionnaries. That is ALMOST funny if you think about it. Strike TWO!

Lastly, I love when this study asks friends of the griever to complete a survey about how this person is doing. Honestly, who are these friends, how close are they to the griever, how much time do they spend together, etc?????? I would imagine my friends who do not read the blog would perceive me as being just fine. Because I, for the most part, look intact. However, it is through reading my insights and the willingness of some friends to really ask how I am doing, will you find out the true story. So unfortunately this is Strike THREE in this study. I have presented you with three strong limitations to this study. A study which Konigsberg is clinging to to make her case.

In Konisgberg's second paragraph she is refuting the necessity of giving grief a voice. In fact, she cites
a study which indicates that such expression has no impact on the adjustment to a loss. I did not read this study she is quoting, but I can speak from personal experience. I have continued to write this blog each and every day since Mattie died. As Peter reminds me this puts us at 506 days and counting. If I wasn't finding it therapeutic, and it did not help me express my feelings, and reflect on my beautiful son, then I would have stopped it long ago. But here is the thing. The blog gives me a VOICE, especially when I can't verbalize how I am feeling. The blog keeps me sane some days, and the feedback I get from my readers is very normalizing for me. As my friend and colleague Nancy reminds me, "As far as being too expressive about your feelings, over 270,000 hits on the blog would say otherwise. You tell of people far and wide who share your feelings and are glad that you speak them. It gives them comfort. Please remember that. In this instance, the loss of a child is unlike any other loss and I do feel that unless someone has experienced the same, they certainly can't make a judgment about the aggrieved."


Konigsberg should have stopped at paragraph two in myth 2, because by the time she gets to paragraph three it is ridiculous. Here she goes again talking about a completely different type of grief, not a personal grief, but collective trauma as we all experienced as a country on September 11, 2001. She is mudding the waters as she is discussing different forms of grief, and yet lumping them together as she talks about the most effective strategy for coping. Repression!

Again she cites a study here, which I felt compelled to search for and read. The study in question was:
Seery, M.D., Silver, R.C., & Holman, E.A. (2008). Expressing Thoughts and Feelings Following a Collective Trauma: Immediate Responses to 9/11 Predict Negative Outcomes in a National Sample. Journal of Consulting and Clinical Psychology, 7 (4), 657–667.
Unless you read Seery et al.'s (2008) study, you would think that the conclusion Konigsberg came up with was profound. But here is the problem, when the 2000 participants were given the opportunity to express their reactions to 9/11, you should know what that entailed. It meant that the following email commentary was posed to them....“If you would like, please share your thoughts on the shocking events of today.” There was no dialogue back once the participant responded by email and there most definitely wasn't face to face communication with the participant during this two year follow up period. Therefore, how on earth do we know whether those greatly impacted by 9/11 were not seeking counseling or some sort of support outside these simplistic email surveys? The answer is....we DO NOT! So the researchers and Konigsberg can not state that expressing reactions through emails was detrimental to participants' ability to recover from this national tragedy. Perhaps those expressing themselves in these sound bite emails had no outside support, thereby explaining their maladjustment, whereas perhaps those not responding to the emails were seeking face to face support and were therefore thriving. We will never know the true answers to my conjections because this data wasn't collected, a major limitation to the study. Ms. Konigsberg's ability to disprove myth two is certainly lacking and has NO scientific substance!

Despite my major issues with Myth two, I would like to say from a personal standpoint there was and sometimes still is great benefits to repressive coping. I admit to using it for the first 6 months of Mattie's loss, and at times when things become very overwhelming to me, I adopt this mechanism. For the longest time I was worried about my ability to black out and become numb to certain things, but then stepping back I realized this is my mind's protective mechanism. So I see the benefits to repressing, but in all good consciousness, this is not a state I would like to permanently live in, which is why slowly (with an emphasis on slowly), I allow myself the time and space to process things on my time schedule, NOT someone else's.

No comments: