Mattie Miracle 2021 Walk was a $125,000 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: 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 29, 2011

Saturday, January 29, 2011

Saturday, January 29, 2011

Tonight's picture was taken in January of 2009. Peter and I took Mattie to NYC to start his regimen of MTP-PE. Because this is a drug still under investigation, we had to begin the use of it at its research institution of origin, which is Sloan Kettering Memorial Hospital. After that initial administration, Mattie was then, through compassionate release, able to get all remaining infusions at Georgetown University Hospital. Thankfully since Sloan Kettering was NOT one of my favorite places! During our visit to NYC, we took Mattie to the Empire State Building. We lucked out, because the day we ventured there, there were NO crowds, no lines, and we did not have to wait at any point during our visit. As we reached one of the observation floors, a photographer snapped a picture of us. I had almost forgotten about this picture until I came across it tonight while cleaning piles of things near my desk. What this picture reminds me of is the intense battle we fought together as a family, and naturally despite all our efforts, it is a painful reality to accept that Mattie died anyway.

Quote of the day: Grief can take care of itself, but to get the full value of joy must have somebody to divide it with. ~ Mark Twain 

Today was a day filled with many ups and downs, as is typical of our weekends since Mattie died. It would have been easy to avoid reality and the world today, but I eventually got up and Peter and I went for a walk together on Roosevelt Island. The irony is that Peter had already walked the Island earlier in the morning before I even awoke. Along his journey today, you can see the snowy landscape he captured on the Roosevelt Island boardwalk.

Peter was even lucky enough to spot a beautiful cardinal, who cooperated and allowed his picture to be taken. The contrast of his red feathers against the white snow seems to capture the peace and tranquility of a winter morning.

Despite the fact that it was quite cold out, the idea of getting out and walking was very appealing and very needed. There were few people walking on Roosevelt Island, which made this a very calming journey. However, as we were walking on the boardwalk, Peter heard something. I was wearing ear muffs, and heard nothing, but what I couldn't hear, I made up for in sight! Right before us a group of five deer literally jumped right over the boardwalk to get to the other side. You can see the "tail" end of the deer on the left hand side of this picture. He maybe hard to spot, because he blends in beautifully with the bark of the trees. I was stunned at the sight right before us, as was the family in the distance. None of us were moving or making a sound until each of the deer jumped over to their destination. Seeing deer, is a special sight to me, and something that Mattie always loved.

Peter and I went out to lunch together after our walk, and we chatted about all sorts of things. When I got home, I had it in my mind that there were piles around me that just had to go! For the most part since July of 2008, I have let things around me just happen. As everyone knows, if you don't sort through piles and throw things away, chaos ensues. Which is what I would say we live in, it is organized chaos, but it is chaos nonetheless. I have always been a person who saves things, but my saving in the past was neat, organized, and livable. Nothing about our life in our home is manageable anymore. It is hard to get the mental energy necessary to attack this problem, especially when I don't want to touch any of Mattie's things. I assure you, that during each stay Mattie had at the Hospital, he accumulated vast amounts of things, and these things all landed up coming home with us. Try fitting Toys R Us and an endless array of medical supplies in your home, and you will get a feeling for our home environment. Any case, what I decided to do today was to start small, and touch only my belongings. Not Mattie's! Sounds good in theory, but my things and Mattie's are very much intertwined.

I cleaned out piles of things all around my desk. Peter's joke to me tonight was he forgot what my desk actually looked like! In the midst of cleaning, I found the picture I posted tonight at the Empire State Building, and I also found a card my parents sent me in October of 2001. At that point, I was three months pregnant with Mattie. Despite the shock we were all in from September 11, 2001, the notion of our family growing was very exciting and the premise of my parents letter to me was to tell of me of their excitement and to also let us know they were coming to visit. Not by plane, but by train. As all of us can remember, after 9/11, flying was not a comfortable or popular mode of transportation. Needless to say, I kept that card, along with many of the wonderful other things that remind me of Mattie. In fact, on my desk was a pile of cards Mattie's friends wrote to him on his 7th birthday. I kept those too!

After I dealt with my desk, which took hours, I then moved onto the area in Peter's closet where we stored all our hospital clothes. I can no longer look at my clothes I wore at the hospital, and I most certainly would never ever wear them again. In fact, I hate sweatpants material so much now, that I will RARELY wear it. By the time I was finished I compiled four large bags of clothes for Goodwill. I still have Mattie's hospital clothes, and those remain untouched, but I look at today's activity as progress. I have to start somewhere. I am not sure if I will continue this process, but I very much would like some livable parts of my home back, and seeing my things everywhere is simply bothering me, and making me feel further unhappy.

Tonight marks day FIVE 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.

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

Myth No.4 Grief Never Ends

Our grief culture asserts that it's perfectly normal to get mired for a long time in a state of despair after losing a loved one. Although Kubler-Ross implied an end point by identifying acceptance as the fifth and final stage, she also concluded that "the reality is that you will grieve forever."

In fact, researchers have now identified specific patterns to grief's intensity and duration. And what they have found is that the worst of grief is usually over within about six months. In a study published in the Journal of Personality and Social Psychology in 2002, Bonanno tracked 205 elderly people whose spouses died, and the largest group - about 45% of the participants - showed no signs of shock, despair, anxiety or intrusive thoughts six months after their loss. Subjects were also screened for classic symptoms of depression, such as lethargy, sleeplessness, joylessness and appetite problems, and came up clean on those as well. That didn't mean they didn't still miss or think about their spouse, but by about half a year after their husband or wife died, they had returned to normal functioning. (So much for the often repeated saying that "the second year is harder than the first.")

Only about 15% of the participants in Bonanno's study were still having problems at 18 months. This small minority might be suffering from a syndrome clinicians are starting to call Prolonged Grief Disorder. Most people respond to loss with resilience, which is often mischaracterized as pathological or delayed grief. Or, to borrow Bonanno's paraphrasing, "If you're resilient after a horrible accident or traumatic event, then you're a hero, but if you're resilient after a death, then you're considered cold." Knowing that this was a common conclusion, he asked the subjects in his 2002 study about the quality of their marriages and found no significant differences between those who recovered quickly and those who took much longer. Nor were the resilient grievers found to be more aloof or distant when interacting with others. As the possibility that they were repressing their grief, Bonanno followed the group for up to four years (some participants dropped out) to see if people who initially showed lower distress levels had delayed reactions. None of them did.

It's hard to tell what makes people resilient. "Personality probably predicts only about 10% of resilience," says Bonanno. "Having money helps, having social support helps, having minimal sources of other stress helps, but no one thing is a big predictor." What we do know is that while loss is forever, acute grief is not.

It would be very helpful for Konigsberg's readers to know how she defines the concepts loss and grief. At times she uses them interchangeably and at others they are very distinct concepts. Especially when she alerts us at the end of myth 4, that loss is forever, but grief is not.

I think what stands out for me the most about this myth is the timeline she and researchers try to attach to grief. As she states in her second paragraph, "the worst of grief is usually over within about six months." What on earth does the WORST OF GRIEF mean? I am pretty sure if we asked people grieving about the "worst" of it, we would most likely generate very different responses. Also from personal experience with the loss of Mattie, I most certainly was not over the worst of it after six months. I was numb for the first six months, and only thereafter did I begin feeling and expressing the loss. In fact, in many ways, I do find aspects of the second year harder than the first. It is harder for various reasons. Social support declines, there are societal expectations placed upon you after one year of mourning is over, and the worst of it all is the reality of the loss hits you front and center and the true grief work, in my perspective, now begins. The work of how to reengage with the world, how to continue living, and how to see and work toward a future.

She cited a finding from Bonanno's 2002 study in which she stated, "about 45% of the participants - showed no signs of shock, despair, anxiety or intrusive thoughts six months after their loss."  My question is what happened to the the other 55% of the sample????? It is great that 45% of the sample adjusted so well to the death of a spouse at 6 months, but that isn't exactly a stellar percentage! Something tells me the other 55% were still working through grief, and it would have been helpful to hear more about them.

Researchers seem very perplexed by what constitutes resiliency in the bereaved! In fact, in Bonanno's study, he set out to examine whether the quality of the participants' marriages would help to explain the grievers' level of resilience. Meaning, if the couple was emotionally connected (which is what I assume "quality" refers to), that perhaps this would explain the ability to be resilient and cope in a more timely fashion with the loss. However, the conclusion was there really aren't good indicators to determine resilience from a loss.

I think what this whole myth achieved was to emphasize an aspect of grief that really shouldn't even be a factor on the table of healing, and that is TIME. Who is to say that after six months, one should be feeling better? What if one isn't? Does that mean something is wrong? Well if you simply analyze the content of this article, you may say, YES. I think quantifying loss is more detrimental than beneficial, and I also think that lumping all losses together is equally unwise. Unnatural and unexpected deaths make grieving additionally complicated and challenging and I am troubled that this isn't even mentioned within this myth. The only participant group examined here were "elderly" individuals who lost a spouse. You can't tell me that a woman who loses her husband early in life, and is forced to raise children on her own, may not have a different grieving experience than an "elderly" woman who lost her husband after many years of marriage?

Tomorrow night, I will present the fifth and final myth. It is my hope that my readers found Konigsberg's article as interesting as I did. I appreciate your visits to the blog and your willingness to read what I have to say about this topic.

Friday, January 28, 2011

Friday, January 28, 2011

Tonight's picture just makes me laugh! It was taken in August of 2003, on Mattie's second trip out to California to visit my parents. We were at the Los Angeles County Zoo, specifically at the sting ray pool, where children and adults could touch these creatures. As you can see Peter snapped quite the picture of us. The story line here was simple. I was bent down next to Mattie pointing things out in the pool, and Mattie was intrigued and ready to jump in to grab what he was seeing. Of course that wasn't going to happen since my mom had a hold of him from behind. Mattie liked freedom and did not like being constricted in any way, so with him it was an art form on how to hold him without him really feeling it! Mattie had many special zoo encounters, and I am happy to have the pictures to remind me of these moments.

Quote of the day: Friendship doubles our joy and divides our grief. ~ Swedish Proverb

I had the opportunity to spend part of the afternoon today with Mary (Ann's mom). As our friendship is evolving, I get the feeling that she enjoys seeing me on a more regular basis. Mary was tired today, yet despite feeling that way, it was evident that she appreciated my visit. Even if Mary is napping, she will periodically open her eyes, check if I am there, chat for a bit, and then go back to resting. Mary is a social person and I think even while napping she enjoys the physical presence of a friend around.

While Mary was napping, in between our chats, I spent time with her roommate. Mary's roommate, I believe, has Alzheimer's disease. She is cute as a button and is physically agile for her age. Based on her disease progression she needs a great deal of attention, reassurance, and companionship. So today I had the opportunity to sit with my new friend for several hours. What I noticed over time, not minutes, but HOURS, is that my companionship seemed to make a difference in her behavior. In the sense that she wasn't rocking back and forth, calling out for help, and crying for attention. All signs of anxiety and confusion, which I saw when I entered the room. I am not implying I did anything special or miraculous. But what I am directly saying is that when human beings are truly present with each other, wonderful things can happen. Even if they are not cognitively intact. The power of patience, time, physical, and emotional connectiveness is the prescription that each geriatric physician should be scribbling on their prescription pads for their patients. When I forget about the importance of these basic human needs, I just reflect upon my new friend, and it is a picture that will remain vividly planted in my brain.

Tonight marks day FOUR 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. At dinner, I chatted with Peter about the article. I felt like I wanted his male perspective, since tonight's myth highlights gender differences and grief.

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

Myth No.3 Grief is Harder on Women

This stereotype can be traced back to a survey of 430 widows in Boston that was conducted from 1967 to 1973 - a time when women, especially older ones, were more dependent on their husbands, both for a sense of identity and financial security, than is the case today. Although no men were included in the survey, the author, psychologist Phyllis Silverman, argued that the death of a spouse weighs more heavily on women because it presents a massive identity crisis for them: "While men need others, their self-development focuses more on individuation and autonomy. A woman's identity is largely framed by relationships..... in losing an essential relationship, she loses an essential part of herself."

It's hard to say whether Silverman's analysis was colored by gender stereotypes popular in psychology at the time or whether it was swayed by her method of recruiting study participants. Most of the women who responded to her widow to widow outreach program were full time homemakers when their husbands died. (Many of them did not even know how to drive.) It was the women who declined help from Silverman's outreach program - and therefore never became part of the study - who had worked outside the home before their husbands' death and continued to work. Of them Silverman noted, they were "correct in their appraisal" that they didn't need help when it was offered, although that assessment did not change her final conclusion that widowhood universally does major and long-lasting damage to women.

The gender beliefs of the people who write about and attempt to help others cope with loss have surely contributed to this misconception. According to a survey sent to counselors who had been certified by the Association for Death Education and Counseling, female grief counselors are more likely than male counselors to believe that there are sex differences in bereavement and that women need more time to work through their grief. Women are also more likely to become grief counselors in the first place.

In 2001, the Stroebes examined all studies that had attempted to measure who suffers more, men or women. To be included, the studies had to meet one of two conditions: widows and widowers had to be compared with a control group of married men and women, or they had to have been evaluated before the loss of their spouse to establish a baseline of their mental health. As the Stroebes pointed out mental distress is not unique to grief alone, and women suffer higher rates of depression in general, regardless of whether they've lost a husband or not. The resulting analysis came to a surprising conclusion: relatively speaking, men suffer more from being bereaved. Yes, widows measured higher on depression scores than widowers, but not once women's prebereavement or control-group depression levels were factored in.

I have to say that I understand the underlying premise for why Konigsberg is attacking this myth. I think there is a misperspection in our society about gender differences as it relates to grief. However, I just wish that she cited articles that were more timely and relevant to our 2011 culture, rather than highlighting research from a study conducted in the 1970s. Naturally when hearing the results of this study we clearly can't determine the accuracy of the data, because the gender role climate three decades ago was quite different.

Konigsberg then cited the 2001 Stroebes study. Here is my issue with all of this. In the midst of her trying to refute the myth that women grieve harder than men (whatever that really MEANS) she is propagating a new myth that "men suffer more from being bereaved." Does it matter which gender grieves more? Is that really the relevant question? Should this be a competition? Or should perhaps we look at assessing the different ways men and women react and handle grief, so that effective treatments and coping strategies can be used to assist them? I agree with her! It is a myth that women grieve more than men. Men grieve, and I asked Peter specifically tonight about this topic. From his perspective, men and women grieve in different ways. He did not like quantifying the level of grief and also felt that was counterproductive. But as Peter reminded me, men do not have many emotional outlets to express grief to, like women do. For women, verbalizing and talking through feelings is rather common place. We just naturally do this with our friends and this form of expression is not considered unusual. Therefore, for example, as I am grieving the loss of Mattie, I have a built in network of women who I can turn to, who are used to connecting with me on an emotional level. This isn't true for men, and certainly over the course of our own grief, I have found many people we know are simply unsure how to help or reach out to Peter. I believe this has a lot to do with the gender stereotypes that are prevalent in our society. Men are supposed to be solid, not to show emotion, and certainly aren't supposed to cry. So what are men left to do? They are left to do just that...... they do! Which may explain why Peter has and continues to be a major driving force in Mattie's Foundation. Early on, after Mattie's loss, I found that Peter mobilized and was energized to create the Foundation and to get it up, running, and productive.

As Peter discussed this issue with me tonight, it became clear that he simply has NO time to grieve. Because he took SO much time off of work when Mattie was ill and dying, he had to return to work fairly quickly and then re-engage rapidly. The workplace is not the environment to discuss, process, and feel grief. At work, Peter must look together, sharp, and I hate to say it, but as if NOTHING is wrong. That is a hard facade to put on even on a good day, but almost impossible to do after you lost your only child. As Peter said, "where is my outlet?" Naturally in the past, when Peter or I had an issue, we could always turn to each other for help. With the loss of Mattie, this isn't the case. This is a VERY, VERY challenging issue to talk about between us, much less to sit with and help each other through it. One thing Konigsberg's myth as enabled us to do tonight, is to talk about the challenges of Mattie's loss for us. Obviously my main outlet for talking about Mattie's loss is this blog. Though Mattie and I were very close and inseparable in many ways, now that he is gone, I do not talk to him. I think of him, but I do not talk to him. Peter, however, has internal chats with Mattie, and these chats can be inspired by seeing the sun, moon, or walking on Roosevelt Island. A part of me wishes I could have those chats, and I admire Peter's ability to do this. I guess what saddens me about this whole conversation this evening is even though Peter and I are working through the loss of Mattie, it is something that has and will always be a part of our relationship. I assure you this is not an easy "something" for any couple to contend with and it does put enormous pressure on a relationship. Which is why from my perspective debating whether men or women are grieving more is irrelevant and inconsequential. The point is both grieve, both hurt, and both need outlets to cope.  

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:
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.

January 26, 2011

Wednesday, January 26, 2011

Wednesday, January 26, 2011

Tonight's picture was taken in August of 2003. Mattie was 16 months old and had just begun to walk. With his level of energy, walking was a mixed blessing. I snapped this picture of him while scooting about the living room. What I love about this picture was his expression of surprise and awe. He was staring at his basket of toys and books, and apparently he found something there he wasn't expecting to see! It was hard to capture these priceless moments with a baby (because they move so fast, time moves quickly, and as a parent you are exhausted), but I tried. As I look back at these photos that I post each day on the blog, I give myself credit now, because even as a mom who felt scattered between being a parent and working, I had the where with all to understand that these moments in Mattie's life would be fleeting, so I better capture them. Of course, I did not know just how fleeting they would really be, nor how valuable these photos would become to Peter and I, until now.

Quote of the day: Every one can master a grief but he that has it. ~ William Shakespeare

Another brilliant quote from Shakespeare, who understood that those observing a griever may see hope, brighter days ahead, and a future for him/her. Naturally for the person grieving it isn't as simple. After all, he/she is the one who has to actually be immersed in the thoughts, feeling, and memories and therefore mastering a new way of living seems at times impossible.

I had lunch today with my friend Margaret. As many of my readers know, Margaret was Mattie's first preschool teacher, and the person who assigned him the symbol of the Moon. It was within that first year of preschool that Mattie's friends referred to him as Mattie Moon! A name that stuck with him even after preschool.

Margaret and I had a lengthy chat today about the Time magazine article I wrote about last night. As I promised I will be continuing that discussion for the next five days. I think what I found fascinating about Margaret's observation today was she could feel a "spunk" or a passion in my writing, which reminded her of the person I was prior to cancer taking over my life. She brought up an excellent point, in the sense that I typically write about personal issues on the blog, but this willingness to take on this article over the course of this week is different. Perhaps even something I couldn't do 6-8 months ago. Yes the article covers the topic of grief, and yes it helps me process Mattie's loss, but it also helps me to do something on a broader scale. The scale she is referring to is that of my former role, an educator. Perhaps in my own way I have decided to make a statement to my readers that could potentially impact how you view your own thoughts and treatment of grief. Though Konigsberg's article is NOT a research or empirical study, it is an article nonetheless, which I am trying to dissect, understand, and explore. Not unlike what I always did in my professional life. However in addition to making a statement about grief and loss, I am also advocating for my profession. Another thing I was known for prior to Mattie's illness. After Mattie developed cancer, my professional identity became non-existent. Though I freely admit that I NEEDED and used my skills each and every day to fight and advocate for Mattie! I can be the sweetest person, but if I am responsible for you (like Mattie was), and I perceive others not understanding and working on my timetable to answer my questions as it pertains to the person in my care, then I will be your worst nightmare.

As Margaret and I talked about grief, she brought up an interesting point. Grief is very fluid, and even while we were talking to each other, we reached peaks and valleys of emotions just in two hours. These ups and downs influence how we will then feel throughout the rest of the day. The point is, our experiences and interchanges in a given day impact our grief and naturally our grief impacts how we take in the people and things around us. In other words, grief is complex! Therefore keeping all this in mind, how is it possible to expect someone who is grieving to follow and progress through stages of grief in order to heal? The answer is.... IT ISN'T! Grief doesn't move in a linear or stepwise fashion because so many outside and internal factors regulate the healing process.

Last night, I explained to my readers that I read the following 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 have been reading more about the author on the Internet and she admits that her "book did not grow out of personal experience, but rather a journalistic desire to make sense of a model for loss that doesn’t seem to be serving us particularly well." I can appreciate her desire to investigate Kubler-Ross's model and I can even admire the fact that she is pointing out how ineffective such a model really is. What I take issue with is her strong stance on the ineffectiveness of expressing feelings and thoughts about loss. I am not implying this must be done with a professional, because I do think death is a universal concept, and therefore with the right support network, great understanding can be achieved. But an outlet of expression is very needed, and stuffing feelings and thoughts is just not effective. It may be in the short term, but as my colleague would always say, in the long term, these stuffed things will come out sideways. Sounds funny, but it simply means that these issues will resurface and when they do they could be compounded by different things.

Below is the first myth of grief that Konigsberg highlights in her article. I typed out the myth for you so you could read it for yourself.

Myth No.1 We Grieve in Stages

One of the reasons that the five stages became so popular is that they make intuitive sense. "Any natural, normal human being, when faced with any kind of loss, will go from shock all the way through acceptance," Kubler-Ross said in an interview published in 1981.

Two decades later, a group of researchers at Yale decided to test whether the stages do, in fact, reflect the experience of grief. The researchers used newspaper ads and referrals to recruit 233 recently bereaved people, who were assessed for "grief indicators" in an initial interview and then in a follow up some months later. In the Kubler-Ross model, acceptance, which she defined as recognizing that your loved one is permanently gone, is the final stage. But the resulting study, published in the Journal of the American Medical Association in 2007, found that most respondents accepted the death of a loved one from the very beginning. On top of that, participants reported feeling more yearning for their loved one than either anger or depression, perhaps the two cornerstone stages in the Kubler-Ross model.

Skepticism about the stages has been building in academia for a long time, and yet they still hold sway with practitioners and the general public. A 2008 survey of hospices in Canada found that Kubler-Ross's work was the literature  most frequently consulted and distributed to families of dying patients. "Stage theories of grief have become embedded in curricula, textbooks, popular entertainment and media because they offer predictability and a sense of manageability of the powerful emotions associated with bereavement and loss," says Janice Genevro, a psychologist who was commissioned by a Washington nonprofit now called the Center for Advancing Health to do a report on the quality of grief services. In her 2003 report, Genevro concluded that the information being used to help the bereaved was misaligned with the latest research, which increasingly indicates that grief is not a series of steps that ultimately deposit us at a psychological finish line but rather a grab bag of symptoms that come and go and, eventually, simply lift.

I believe we need to take a step back from what Konigsberg is suggesting about Kubler-Ross's final stage, acceptance. Kubler-Ross created this model for people who were DYING. Therefore, accepting the fact that one is indeed dying would be the ultimate indicator, I suppose, to adjusting to one's own mortality. It is other professionals who have applied Kubler-Ross's model to those who are grieving. None the less, despite the simplicity of the word acceptance, I do not think any grief professional would simply think that accepting the death of a loved one translates into physically accepting that the person is dead. Certainly this is a component of acceptance but not the full significance of the word or concept. With traumatic or complicated grief, the actual physical acceptance of the death of a loved one doesn't occur immediately. But for the most part, with typical grief, many of us accept from the outset that our loved one is nor longer physically part of this world. I would instead encourage one to think of acceptance as not only the physical acceptance of the loss, but the emotional and long term acceptance of the loss. It is the later that is particularly challenging to work through, and I have to say I have read and heard stories from other parents who have lost children ten or more years ago, who are still struggling with acceptance. I would say you adjust to the world without your child, but you may not necessarily accept it. So I have to wonder how the word, acceptance, was operationalized in the study Konigsberg cites from the Journal of the American Medical Association (2007). I also would LOVE to know how many of these subjects in this study lost a child. Because for the most part Konigsberg discusses studies in her article that pertain to the death of a spouse. I am not implying that this isn't painful by any stretch of the imagination, but I am implying that the death of a child is not natural, and that produces many obstacles to acceptance!

What is a glaring issue in this entire article is the blurry line about what constitutes a loss. Naturally for me and my blog readers, the death of Mattie, my seven year old, from osteosarcoma is at the forefront of our minds. But Konigsberg opens up her article (which I highlighted last night) with a listing of all the many kinds of losses in our culture. When she mentioned LeBron James' abandoning the Cleveland Cavaliers for the Miami Heat as a loss, I almost fell off my chair. Please do not tell me that an overpaid athlete who decides to leave one team to play on another constitutes a LOSS! A loss in which we even try to apply Kubler-Ross's stages!!! If this is indeed true, this speaks volumes about our society. I am sure Kubler-Ross is doing somersaults in her grave knowing that her model is being discussed and applied in such a trivial matter. This may be an upset for basketball fans, but honestly is this really a LOSS? Something to grieve over? Forgive us Elisabeth (Kubler-Ross)!

My mom and I were chatting back and forth about this today, and I copied a paragraph she wrote me that addresses different losses, and how the loss of someone close to you is SO different from perhaps a national tragedy such as September 11. My mom happens to be correct, and the grief research and literature would actually back up her sentiments. My mom wrote, "One can feel genuine sadness and sorrow for the victims of a public tragedy and deal with the fears and insecurity these vicious acts have on society by joining with our neighbors, friends and family who are experiencing similar pain in a similar way. On the other hand, a personal loss of a dearly beloved member of one's family is a pain that is suffered so intensely that it isolates one from everything and everyone by changing one's perspective, philosophy and place in a world suddenly devoid of the love and presence of the loved one that made life worth living. Body and soul are torn apart in ways that cause devastating damage to the life force that sustains the human heart in its journey through this world. For in the end, it is the bereft one who is forced to exist with a broken heart accepting the reality that there is no way to replace the irreplaceable and there is no pathway to attain the unattainable and that the control of one's destiny is a illusion that can be shattered at any moment. Five steps to acceptance and in turn, moving on to a "new normalcy" exists only in the minds of the uninformed!"

To Konigsberg's defense, I do agree that NOT all mental health professionals are up to date on the latest research and findings as it relates to grief and loss care. I saw this first hand at Mattie's hospital and I saw this with the hospice workers who assisted Ann as her father was dying. In a year's time I saw a lot of materials pass before me about Kubler-Ross's model. None of which were helpful because like Konigsberg's article expresses, grief isn't a "series of steps." In fact thinking of it in this fashion can be more detrimental than beneficial, because on any given day I can take one step forward and 10 steps back. I can't judge my progress on these steps, instead, I think grief is more of a feeling, a state of being, and an outlook. Which is WHY it is a psychological construct that is hard to measure, grapple with, and truly understand.

January 25, 2011

Tuesday, January 25, 2011

Tuesday, January 25, 2011 -- Mattie died 72 weeks ago today.

Tonight's picture was taken in August of 2003. Mattie was a year old. Two things stand out to me about this picture. The first is the color Mattie was wearing. Mattie was naturally attracted to red. Red is a bold and strong color, and it really fit Mattie's personality. The second thing about the picture to note was what Mattie was holding. Mattie LOVED stackable cups. He had multiple sets, and he could get very creative with his use of them. He loved investigating what to fill them with and of course to see what these things looked like scattered ALL over the floor. He particularly loved filling the cups with rice and dried beans, and honestly I can still find grains of rice in our home today from playtime moments with Mattie.

Quote of the day: If you suppress grief too much it can well redouble. ~ Moliere

I find it ABSOLUTELY fascinating that brilliant minds like Shakespeare and Moliere could be SO perceptive and compassionate about grief. They in MANY ways were ahead of their time. After all, their philosophic thoughts were WAY before the development of the field of grief counseling. These great writers understood the importance of talking, processing, and feeling the loss of a loved one, and in many ways their quotes reveal that if you deny or suppress one's feelings, they will multiple. Brilliant!!!

Why I am highlighting this?!!!!! I am highlighting this because of the OUT of TOUCH article that I recently read in Time magazine (January 24, 2011, pp. 42-46) entitled, 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. My dad sent me the article, because he knows my interest in reading about this subject matter. As my dad guessed correctly, I have a lot to say about this article. An article that clearly states and feels that "PROCESSING" grief is overrated and actually expressing the loss is just as effective as repressing the feelings. The only reaction I have is ..... OH MY GOD! What century am I in?!!!!

I will be confronting aspects from this article over the course of the next couple of days. So hopefully you will bear with me, as I try to make a point about grief. There is no way as a mental health professional, I can let the premise of this article go and be accepted by the public and certainly by anyone grieving. This is already an area we are not comfortable discussing freely in our society, and though we as professionals continue to make strides, after reading this article, I felt as if we were transported back to the thinking from the 1910s, where the stiff upper lip mentality was considered healthy and the norm.

Before I begin, I freely admit that I am reading this article with a biased lens. I am a trained and licensed mental health professional, and therefore if you are going to claim that my profession is NOT important, you are already going to put me on the defensive. So naturally, I needed to know who on earth wrote this article and learn about her professional background. The author of the article, and of the new book Truth About Grief, is Ruth Davis Konigsberg. Ruth Davis Konigsberg first heard about Elisabeth Kubler-Ross’s five stages in a high school psychology class. After graduating from the University of Pennsylvania, she began a career in magazine journalism and has worked as a editor for New York and Glamour and written for The New York Observer and ELLE, often about psychology. Konigsberg lives in Pelham, NY, with her husband and two children.

I have typed the first several paragraphs of her article for you, so you can follow along........

The five stages of grief, are so deeply embedded in our culture that they've become virtually inescapable. Every time we experience loss - whether personal or national - we hear them recited: denial, anger, bargaining, depression, and acceptance. They're invoked to explain our emotional reaction to everything from the death of a loved one to the destruction of the Gulf of Mexico after the BP oil spill to LeBron James' abandoning the Cleveland Cavaliers for the Miami Heat.

The stages have become axiomatic, divorced from the time and place of their origin. If you were to read Elisabeth Kubler-Ross's On Death and Dying - the book that in 1969 gave the five stages their debut - for the first time today you might be surprised to discover that Kubler-Ross, then a staff psychiatrist at Billings Hospital in Chicago, was actually writing about the experience of facing one's own death, not the death of someone else. It was other practitioners, having found the stages so irresistibly prescriptive, who began applying them to grief, a repurposing that Kubler-Ross encouraged. After all, there was no specific data set to contradict, no research protocols to follow: Kubler-Ross had based her theory on onetime interviews she had conducted with terminally ill patients, but she never asked them specific questions about the stages, because by her own account, she only conceived of them while up late at night after she had already been commissioned to write On Death and Dying.

The book was a surprise best seller, and Kubler-Ross became the fulcrum for the nascent death and dying movement. To her credit, she helped shatter the stoic silence that had surrounded death since World War I, and her ideas certainly raised the standard of care for dying people and their families. But she also ushered in a distinctly secular and psychological approach to death, one in which the focus shifted from the salvation of the decease's soul (or at least its transition to some kind of afterlife) to the quality of his or her last days.

It wasn't long before a solution was put forth to help the bereaved as well, one promoted by an entirely new professional group specializing in the task of mitigating grief's impact. From the 1970s to the 1990s, thousands entered the field, offering individual counseling, setting up healing centers and hosting support groups at hospitals, churches and funeral homes. These counselors introduced their own theories, modifying Kubler-Ross's stages into a series of phases, tasks or needs that required active participation as well as outside professional help. Grief became a "process" or a "journey" to be completed, as well as an opportunity for personal growth. Few questioned the necessity of a large corps of private counselors dedicated to grief, despite the fact that no country other than the US seemed to have one.

Our modern, atomized society has been stripped of religious faith and ritual and no longer provided adequate support for the bereaved. And so a new belief system - call if the American Way of Grief - rose up to help organize the experience. As this system grew more firmly established, it allowed for less variation in how to handle the pain of loss. So while conventions for mourning, such as wearing black armbands or using black bordered stationery, have all but disappeared, they have been replaced by conventions for grief, which are arguably more restrictive in that they dictate not what a person wears or does in public but his or her inner emotional state. Take, for example, the prevailing notion that you must give voice to your loss or else it will fester. "Telling your story often and in detail is primal to the grieving process." Kubler-Ross advised in her final book, On Grief and Grieving, which was published in 2005, a year after her death. "You must get it out. Grief must be witnessed to be healed." This mandate borrows from the psychotherapeutic principle of catharsis, which gives it an empirical gloss, when in fact there is little evidence that "telling your story" helps alleviate suffering.

But that's not the only grief myth to have been debunked recently. In the past decade, researchers using more sophisticated methods of data collection than their predecessors did have overturned our most popular notions about this universal experience.

I am quite confident that those mental health professionals who work in the area of grief and loss, no longer abide and follow the five stages of death and dying outlined by Kubler-Ross. Instead, I think that the pop culture, media, and lay people tend to turn to this model because it is simple and makes sense. It makes sense because it is presented in a logical manner. However, as most grief professionals know, grief is NOT logical, it doesn't follow linear stages, and trying to confine one's loss to such a framework overall is not helpful. So in that sense, I agree with the author, but disagree with her about the fact that this is a model followed by effectively trained therapists today.

I also do not agree with Kubler-Ross..... grief does NOT have to be witnessed in order for it to be healing. As I have said numerous times, there are aspects to grieving that are very private, and perhaps this is better in the long run, because it is very hard and painful to really listen to the depths of emotions and thoughts expressed by a person who is grieving.

The author eludes to the striping of religion and ritual in the grieving process. As if Konisberg feels that the psychological field has taken over and superseded the works and practice of our spiritual counterparts. I am sure from a historic standpoint she is right, but having lost Mattie, I saw the support or LACK there of I received from the church. In fact, some of you may recall the argument I had over the phone with the rector of the church, who made it virtually impossible to try to find a funeral date. Only after I snapped at him and told him that he was being thoroughly insensitive to the fact that I just lost my son, did he change his tone with me. Unfortunately we live in a society where we do not make the time to truly connect with each other, and this is most definitely reflected in the church as well. The natural support groups that we could turn to in the past (family, friends, religion, etc) as a society have now dwindled and therefore the helping profession has stepped in where others fear to tread.

I will leave it at that for tonight, and will pick up with the author's first myth tomorrow night. The one reflection of my day that I wanted to mention was the time I spent this afternoon with Ann's son, Michael.  Michael was working on his homework when he got home from school, but then as the afternoon wore on, he took a break. I was sitting in another room reading a book, when Michael came up to me and asked if I would play cards with him. Unlike Michael, I am NOT a card player. I never liked playing cards as a kid, and fortunately for me, Mattie did not care for it either. So already I am not the best of play buddies for Michael on that front. Nonetheless, he still wanted to play. We played War. A game, even I remember playing as a kid. You can learn a lot about playing a game with a child, and what I love about Michael is he plays fair. He also likes chatting while playing, which makes the game far more interesting to me. It has been a long time since a child has come up to ask me to play. So in essence, Michael's gesture meant a great deal to me.

I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen, who remembers us each Tuesday. Kristen wrote, "Dear Vicki and Peter- I am thinking of you tonight on this Tuesday, and every day. Much Love."

January 24, 2011

Monday, January 24, 2011

Monday, January 24, 2011

Tonight's picture was taken in May of 2007, during Mattie's second year in preschool. In fact, it was day 107 of his preschool year in this photo, and since he was line leader that day, he got to bring in three things he wanted to showcase in his class "museum." Mattie and I talked about this for days before he finally picked the three items he wanted to show his classmates. The first item, which you may be able to see on the table behind Mattie, was a battery powered Elmo. What Mattie loved about this Elmo was he did the Hokey Pokey. If I recall correctly, once Mattie flipped Elmo's "on" switch and Elmo began to dance, it inspired all of us and we got up and danced the hokey pokey too. The second item was a jack-in-a-box, which Mattie loved. We got it together on his trip to Sesame Place in PA. Despite winding the box up so many times, Mattie never got tired of seeing Super Grover jump out of it. The third item he brought that day to showcase was a special book I got him. The book featured the story of, The Little Train That Could. But the fun part about the book was it had a wind up train that attached to the book and literally made the train trip as you were reading the story. For years, Mattie LOVED this book and this train. I remember the excitement of that day in preschool, and I remember snapping that picture of Mattie during circle time. During Mattie's second year of preschool his symbol changed from Mattie Moon, to Mattie Magnet. The irony is the magnet was also another powerful symbol that captured Mattie's personality, and I can't see a moon or think about a magnet without reflection upon Mattie. 

Quote of the day: Grief makes one hour ten. ~ William Shakespeare

Shakespeare is absolutely correct. Time takes on a completely new meaning after the death of a loved one. In a way, the days seem longer than 24 hours and in so many ways, each day in an extension of the previous one. Instead, without Mattie in our daily lives, the signs of demarcation that guide a day, week, and year are clearly missing. For us, time is now marked as............ before Mattie's death AND after Mattie's death.

As I was getting ready this morning, I heard an advertisement on the radio for the Disney movie, Bambi. In fact, the scene I heard was the dialogue between Bambi and his new found friend, Flower, the skunk. In any case, just listening to the commercial reminded me of the many times I watched this movie with Mattie. Bambi was not one of my favorite Disney films, because as you know, Bambi's mom is shot by a hunter, and as an adult, your heart is shattered thinking about Bambi growing up without his mom. As Mattie's mom, and most likely ALL moms, we view this movie and say to ourselves..... what would happen to my baby if I died? Naturally we do not think the other way around..... what if my baby dies, what will happen to me? That definitely wouldn't make for a pretty Disney movie plot.

Anycase, I did not get hung up long on Bambi, because my mind quickly jumped from one Disney movie to the next. The next being Dumbo. Dumbo also has a sad plot to it, in the sense that Dumbo is separated from his mom, because she is deemed a "mad elephant." Of course any mother would be considered dangerous if her child was threatened, as was the case with Dumbo. Mattie and I watched Dumbo many, many times. It was one of my favorite films as a child, and the part that Mattie and I always loved together was when Dumbo's mom sings "Baby of Mine" to him. I attached the link to the song below to refresh your memory of this precious moment in the film. But basically Dumbo's mom is in confinement and separated from Dumbo. One night, Dumbo visits her, and the song is the tender interchange between the two. Needless to say, Mattie and I had many "Baby of Mine" moments in the Hospital, as we spent long, harrowing, and torturous hours together fighting cancer.

Baby of Mine - from the Movie Dumbo:

I met up with Ann later today at the bookstore. I have renamed this bookstore, the breakdown bookstore. Because just last week, I had a crying fit there. Today I stayed in the fiction section, but even so, I find that I gravitate to stories that elaborate on grief and loss. In the midst of that, we found a book that profiles people by their date of birth. I figured how accurate could this book honestly be, because what does a month and date actually reveal about a person. The funny part is I would say the book is quite accurate, and when I read the description of a person born on April 4 (Mattie's birthday), I was stunned. It describes this person as an outstanding builder, as creative, artistic, and very loyal. All characteristic traits of Mattie!

However, I did not feel like venturing out much today, and returned home early in the day. My buddy, Patches, was thrilled to see me, and kept me company. I do find that I am extremely tired, and I am not sure if that is because of the weather, my physical recovery from last week, or where I am at emotionally. Perhaps all three!

January 23, 2011

Sunday, January 23, 2011

Sunday, January 23, 2011

Tonight's picture was taken in January of 2005. Mattie was about two and a half years old. By this stage, Mattie was in love with the bathtub, and he switched from a child deathly afraid of bath time to a child I couldn't get out of the tub. Baths could go on for over an hour, and therefore, I had to plan accordingly. With each bath, he would bring in cars, trucks, and other toys to play with. As you can see from this picture, there was a yellow rubber duckie in the tub with Mattie. This duck was on display at my baby shower, and as Mattie got older, he decided to claim all my baby shower ducks to play with. In fact, this duck still sits on my bathtub today. Somehow I don't have the heart to move it. This duck symbolizes my pregnancy with Mattie, and naturally it reminds me of all the times he played and had fun in the tub. That is the problem, each thing I keep has a story and a meaning to it, and therefore parting with Mattie's things seem impossible to me.  

Quote of the day: Happiness is beneficial for the body, but it is grief that develops the powers of the mind. ~ Marcel Proust

Well if this quote is true, then Peter and I are developing incredible cognitive powers! Early this morning, Peter went for a walk on Roosevelt Island. I would like to report that I went with him, but I did not. Early and cold are NOT my two favorite words. When Peter returned, he showed me some wonderful pictures he took on the Island of woodpeckers. In addition, it is during these quiet walks, I know that Peter reflects on Mattie and our times together. Peter told me that while walking today, he reflected on the fact that Mattie has in a way planted thousands of seeds, and at all times of the year (not unlike plants), these seeds grow and produce beautiful flowers. In Mattie's case the beautiful flowers are not literal, instead the seeds Mattie planted get harvested as friendships and acts of kindness by those around us. We saw this in full bloom yesterday at Mattie's favorite restaurant, when the general manager conveyed to us how Mattie touched his life, and how he plans on supporting our Foundation Walk. When we sit back and see all the seeds Mattie planted in seven short years, we find that we have to stop, pause, and smile, because it means Mattie has impacted many lives and as a result it is in these friendships and kind acts that Mattie's life is captured and forever remembered. When you lose a child, healing is NOT about forgetting, it is ALWAYS about remembering. On our quest to find a future, Peter and I find it imperative to know that Mattie's life and death served a purpose, and we are reminded of this purpose, when we see the essence of our special son reflected in the thoughts and feelings of others.

I never ventured out today, but our bird feeder kept us entertained for portions of the day. We have flocks of birds who visit us daily, and as you can see Peter took some pictures of the hundreds of sparrows stopping by to eat. Watching their behaviors can be fascinating, especially since they do not travel alone. They travel and swoop down in handfuls. As you can see we had sparrows everywhere!

I love this photo that Peter took because he captured the crazy dynamics we see all the time. Notice one sparrow pecking at the other on the upper left hand side of this picture. They all fight for a place on the feeder, and some are more aggressive about getting their needs met.

In the midst of this feeding frenzy, guess who was watching all of this very carefully?! Our cat, Patches. Patches at times charges the window and would love to get her paws on a bird of two. Naturally she can't, but the sparrows keep her busy and engaged! Patches is 14 years old, which is old for a cat, and has all sorts of physical ailments. Yet she still has an incredible cat instinct to chase anything that moves.

I received two lovely e-mails today. One that came to me all the way from Australia. I told Bern (short for Bernadette), that I am honored to know that Mattie's blog has made it on the other side of the world from us. In Bern's email, she mentions a seven year old girl, Mikayla, in Victoria, Australia who recently lost her battle to cancer. However, if you should click on the link below and see the photos from this child's funeral, you may be a bit surprised. I know I was! So much so that I wrote back to Bern a couple of times. What caught my attention was at the funeral, Mikayla's casket was carried on a horse drawn processional throughout the city. There were police directing traffic, and people were lining the streets blowing bubbles and paying their respects to this child and her family. In the United States, or at least in Washington, DC, to get a horse drawn carriage funeral procession would imply that you were a person of significance and notoriety. The average citizen doesn't get such a funeral. So naturally I was confused when I saw Mikayla's funeral pictures. She wasn't a dignitary, she was a seven year old child. However, here is the beauty in this from my perspective. What Victoria, Australia was saying by having such a ceremony was that Mikayla was important, and what made her important was the sheer fact that she was a member of her community. A community that wanted to support her and show her that even in her death, she will always be remembered and cherished. I was deeply moved by this expression of community love and by Mikayla's thoughts and wishes before she died.

Bern wrote, "Hi Vicki, apropos of your blog posts these past two days, on the subject of Mattie being forgotten - I think both you and Peter have already ensured he will not be, not just by setting up the Mattie Miracle Cancer Foundation, but by letting people into your lives, and sharing your thoughts and feelings with them through your blog, and otherwise. Down here in Victoria, Australia, we have spent recent months following the story of a little girl called Mikayla, who passed away from cancer not long before Christmas. Her heart-rending wish was that she would never be forgotten. This theme was picked up by the newspapers, so a whole lot of people got involved to ensure that this wish of hers would come true. I didn't bring this to your attention at the time, but after your comments on the subject of being forgotten, thought you may possibly be interested in hearing Mikayla's story, as she was of a similar age to Mattie and while I've never met Mattie, his personality sounds such that I can imagine him having a similar wish."

Information about Mikayla's life:
The second message was sent to me by a close friend of my sister-in-law's. While I was raising Mattie, my sister-in-law would talk to me about Lesley. Mainly because we were both raising only children, and our boys were very much alike. It wasn't until Mattie actually developed cancer, that Lesley and I started writing to each other, and the first time I met her was when she came down from Boston for the day to attend Mattie's funeral. I will never forget meeting Lesley in person, because I was so touched that she would travel all that way just to hug me at Mattie's funeral. Lesley wrote, "I just read the blog. I am someone that you do not really know and your story has impacted my life in every way. The power and honesty in your writing has made many people pause and reflect on what is important. I am very aware of the similarities in our family structure and from your writing, Mattie and Max were from the same mold. With that mold, I can imagine the relationship you and Peter had individually with him. I also understand the " three" dynamic.... It is incredibly intense and special. My husband and I have spoken about what you have faced, the strength you have as a couple, but also how one forms a future. We have also had the same questions as the manager of the restaurant, " Could we go on?" In all honesty, I do not know my answer. I just know that it would be impossible to "move on" or "feel better now." I think your ability to face each day and swim through it is amazing. The way you have given back to a horrible disease that took so much from you is admirable. My thoughts continuing to be with you and Peter."