Wednesday, August 4, 2010

Wednesday, August 4, 2010

Tonight's picture was taken in August of 2006, right outside the La Brea Tar Pits in Los Angeles, CA. Each August, Mattie and I would venture to Los Angeles to visit my parents. It is without a doubt that the place Mattie always wanted to go back and visit during each West Coast trip was to the Page Museum. Here is some information on the museum, which I think will help you understand why this was SO fascinating to Mattie.

The Page Museum is located at the Rancho La Brea Tar Pits in the heart of Los Angeles. Rancho La Brea is one of the world’s most famous fossil localities, recognized for having the largest and most diverse assemblage of extinct Ice Age plants and animals in the world. Visitors can learn about Los Angeles as it was between 10,000 and 40,000 years ago, during the last Ice Age, when animals such as saber-toothed cats and mammoths roamed the Los Angeles Basin. Through windows at the Page Museum Laboratory, visitors can watch bones being cleaned and repaired. Outside the Museum, in Hancock Park, life-size replicas of several extinct mammals are featured.

I will never forget taking Mattie to this museum for the first time. He was simply in awe, and going to this museum and so many other places with Mattie will always be etched fondly in my memory. His energy and fascination was contagious, and if I had to give an analogy, then I suppose life without Mattie is like living without your full lung capacity. Sure you can survive, but day to day living is not as easy, pleasant, or comfortable.


Poem of the day: Time to heal by Charlie Brown

Put a fence around my grief
Is that what you're telling me?
That there should be a limit
To how long/how sad I can be?
When you've lost your child
And they walk beside you no more,
You live your life knowing
You are changed forever at the core.
You know your heart will always
Bear love lost's pain
And that you'll never cease to mourn
This doesn't mean you are not sane
So give me time and
Give me space
Recovering from grief
Is not a race.


I spent the majority of today at home and in bed. I have my moments when I feel overwhelmed, tired, and fatigued, and this is definitely one of those weeks. Despite not leaving our home, thanks to my trusted Blackberry, I have instant support when I need it. Throughout the day Peter, Ann, and Karen checked in with me, and naturally with Nurse Patches (my cat) on the scene, I always have furry company.

Later this afternoon, I headed to the airport to pick up my parents who are visiting for a couple of days before going on an overseas trip. I will see them when they return from their vacation as well. I am not sure how I got so lucky today, but I never hit any traffic, and I was driving during rush hour. For one minute, I wondered what city I was in, because I never experienced such open roads. My parents and I had a chance to catch up on the car ride back into town, and we even sat down and had tea together until Peter was able to leave work and have dinner. My mom and I used to talk almost on a daily basis before Mattie got sick, and as many of you now know, I am telephone averse. So this makes staying connected much more complicated. So needless to say, we had a lot to catch up on in person, that no e-mail or text message can replace.

When my parents got into my car today, my dad commented on the rubber lizard sitting on my dashboard. This lizard was Mattie's of course, but it wasn't sitting on my dashboard until yesterday. On Tuesday, I had Ann's two girls in my car. Abbie, Ann's youngest daughter, loves to go through the compartment in the armrest in my back seat. This is the compartment Mattie stored many of his trinkets. I have removed many, but some still remain. Any case, Abbie once listened to a story many months ago, where I told her and Katharina that when I was driving, Mattie would occasionally throw things at me. He wanted to startle me, and he did a good job at this, especially when he threw fake spiders, lizards, and other creepy crawling things my way. Over time, I became immune to Mattie's games, and never drove off the road, but in the beginning, he definitely surprised me. Well Abbie remembers this story quite well, and when she is in the car with me, she seems to take over Mattie's role. Yesterday, as I was sitting in the front seat, minding my own business, a lizard came whirling through the air and into my lap. She made me laugh, and instead of throwing it back, I decided to put this green cutie on the dashboard. So Lizzy remains with me up front!

We all went out to dinner tonight, and what always surprises me is how many people eat out during a weekday. The restaurant was lively and the atmosphere somewhat perked me up. I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "In my opinion, there is a difference between grief and depression. Yes, grief can turn into depression but should certainly not be diagnosed that way in the beginning nor should it be treated as one treats depression with drugs. Our quick fix society is impatient for people to recover, to move on but that is not the way to healing; some things cannot be rushed. When you see someone who after a significant amount of time cannot work, cannot reestablish a routine, then intervention may be necessary but as you said, it should be a mental health person making that diagnosis. To feel grief after twenty years doesn't say illness to me, it says deep and abiding love. If you have locked yourself in the house or have no relationships still, that says illness. Generalizations don't help in the diagnosis of grief versus depression; I find it is a warning note that sounds in my head and my gut when I am in the second or third hour of listening to a client. And then I start listening for the clues to which or both situations we are dealing with. What primary care physician has the time or experience to do that? You and Peter are certainly sad, certainly grieving, but is it depression? I would say no at this point and I would be reluctant to suggest medications unless you said you simply could not cope with the level of feelings you are experiencing. Today as I spend my time communing with nature, breathing and be-ing, I send you the strength that I get from that renewal. I hold you and Peter gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote a message to me and a message and poem to Peter.

Good Evening Vicki,
I'm glad that you were able to turn over the blog to Peter tonight as I know that it takes a lot out of you each day. The picture tonight as all the others show Mattie's essence and as a faithful blog reader, I appreciate knowing much about him. It is amazing to me how one can feel a person even though they have never met. It just shows that when you are ready you will be able to pen the book so many of us feel you have in you. You have given us so much in friendship. Your family is a beautiful example of unconditional love, a quality that is not held by enough families. Be well and continue taking care of yourself.

Hi Peter,
I know that Vicki is the constant scribe of the family, yet, you spoke so eloquently this evening. I hope that we will meet one of these days as I know that we are already friends. I am sorry that people are having so much trouble asking you how you are feeling. Unfortunately, it is not unusual as death is so difficult for many to discuss especially when they are discussing a child's death. You are a special man and are a great dad. I love it when Vicki shares about Mattie and your excursions or activities. Your Lego marathons are priceless. Please know that you are always in my thoughts along with Vicki and Mattie. I wish you a good sleep and peace often. Please take care of yourself too as often when we are caregiver to those we love, we sometimes forget about ourselves. Thank you for all of your perceptions and shares.

PETER'S TALE by Nancy Heller Moskowitz

This Tuesday, Daddy spoke.
His words not often heard.
For many, at work, appear unsure of what to say .
Do they fear that asking will cause him pain?
What they don't realize is his loss is always there.
In order to grieve fully, he must have a voice!
To remember,
And share his memory of his cherished Mattie.
Thanks for speaking out today,
Marking another week of pictures and stories.
A week where Daddy spoke,
And we are here to listen.

Tuesday, August 3, 2010

Tuesday, August 3, 2010 -- Mattie died 46 weeks ago today.

Tonight's picture was taken in May of 2003. I took Mattie to a local petting zoo, and he was simply fascinated by all the animals. Mattie loved animals right from the beginning, and he literally wanted to jump out of my arms that day and into the pen with the animals. I loved Mattie's hands, and as you can see specifically from his right hand, each of his fingers were like antennae which put out a signal to help him understand the world around him.

Poem of the day: No One by Charlie Brown


Do you think
That men don't cry?
Sometimes the tears
Are all inside.
This little boy
He was my son (sun).
So impossible to believe
His time is done.
And no one asks
Or says his name,
As if that could make
Tears fall like rain.
It hurts so much
That he's not here,
And it hurts too
That it's my pain you fear.
So find your courage
And walk with me,
Use his name

 
I am so happy many of you enjoyed hearing from Peter last night. As the originator of the blog, I feel it is very important for you to hear from him. His perspective matters! I think it is quite evident that though Peter MUST function and go to work, it doesn't mean that he is grieving any less than I am. In fact, in many ways, Peter is much more emotionally open about grief than I am, and I am happy he has the courage to voice his feelings and disappointments through the blog, which in essence has become our grief journal.
 
Today is Tuesday, and as such, this marks the 46th week Mattie has been gone from our lives. It is funny, I may not focus upon the fact that it is Tuesday, but somehow within my mind and body, I can feel the weight of this day. It is almost like an automatic response. Like when you see a camera, you smile. For me, when Tuesday is upon me, I just feel sad. This evening, while I was cooking dinner, our resident Jack Russell Terrier, JJ, came by to visit. I had our front door open, despite the humidity, because I like the summer sounds outside, and I know Patches (our cat) enjoys running inside and outside while I am cooking. Any case, with the door wide open, in walked JJ. JP, JJ's owner, was right behind JJ and he told Peter a story that I found VERY touching, and it seemed to be a perfect way to acknowledge Mattie on this Tuesday.
 
When Mattie was healthy he would run around with JJ everyday outside (regardless of the weather!). They practically grew up together, since JP got JJ when he was a puppy. One day while they were playing outside, JJ grabbed one of Mattie's sandals right off his foot. JJ claimed that sandal and basically because Mattie's feet were growing and he just got new sandals, Mattie gave the pair of sandals on his feet to JJ to play with and take home. This incident has to have occurred about two years ago at least. JP told Peter tonight that he finally caved in and decided to throw Mattie's old and dog chewed sandals in the trash. Or that was his intention, but clearly he did not check this action out with JJ. When JJ went to his toy area and did not see Mattie's sandals, he began a full search. Needless to say, JJ ransacked the kitchen garbage can, made a mess in the process, but he maneuvered the can just so, that he was able to retrieve the sandals and reclaim them once again. I don't know about you, but this story is striking to me, because Mattie's memory is so important to JJ that JJ couldn't part with this item from his special friend. Sometimes these simple stories are the ones that are the most meaningful, and just like children, I feel animals also react to things and people rather honestly. I have NO doubt Mattie is smiling over JJ's beautiful gesture to keep his memory alive today! 
 
Unlike my usual blog postings, tonight's I admit is different. It is different because I feel the need to comment on the issue of grief versus depression. Particularly whether depression related to or caused by bereavement should be diagnosed and considered identical to all forms of depression? Before I continue on my soap box, I want to make sure we are all on the same page with this discussion. To learn more about Major Depressive Disorder (Depression), I attached a link. http://www.allaboutdepression.com/dia_03.html

This link provides the exact criteria used to evaluate someone for depression. Depression is a disorder that involves feelings of sadness lasting for two weeks or longer, often accompanied by a loss of interest in life, hopelessness, and decreased energy. Such distressing feelings can affect one's ability to perform the usual tasks and activities of daily living. Though many commercials out there would have you believe that your family practitioner can diagnosis depression accurately, I would caution you. Physicians have excellent training typically for what they are competent to treat, but the MAJORITY of them do not have the knowledge and experience to identity mental health issues and disorders. So I want to make sure you know where I stand on this..... only qualified mental health professionals such as mental health counselors, psychologists, psychiatrists, social workers, and psychiatric nurses should be making such crucial mental health assessments and diagnoses.

The other concept important to understand for this discussion is The Diagnositic and Statistical Manual of Mental Disorders (DSM). The DSM is published by the American Psychiatric Association and is the handbook used most often in diagnosing mental disorders in the United States and other countries. The first edition (DSM-I) was published in 1952, and had about 60 different disorders. Over time this manual has evolved and in 1994, the fourth edition of the book, the DSM-IV, arose. Now, almost 19 whole years later, the newest addition of the DSM, the DSM-V, is soon to released in May 2013. With this pending release will naturally be SOME changes, updates, and additions to how mental health disorders are evaluated and assessed.

This leads me to the proposed revision at hand. In a nutshell there are two camps within the mental health field. The first camp believes that the "bereavement exclusion" criteria should be removed from the evaluation of Major Depressive Disorder (Depression). According to the DSM-IV, if individuals are grieving the loss of a loved one, then they are then excluded in many cases from being diagnosed with depression. However, the DSM-V, would like to eliminate that exclusion criteria. So in essence under this scenario, if clients come in with the symptoms of depression, then despite the fact that they are grieving, they would be labeled with depression. The second camp is very much opposed to the removal of this exclusion criteria, because this camp feels as if bereavement and depression, though they may look the same, are different, and should be treated differently.

What got me on this topic tonight? Well several of my friends told me about a segment on NPR yesterday. My friend Carolyn spoke to me over dinner about this last night, and then my friend Christine, actually sent me the link to the NPR recording today. When I received an e-mail from Mattie's oncologist, Kristen, about this same debate, I realized I had to say something. I have to say something about this because I am not only a mental health professional, but I am someone in the midst of a very difficult grieving process. I have attached more interesting links below. The first one is to an article that was published on line through Medscape Today in 2008. The 2008 article highlights the research of Kendler and Zisook (both psychiatrists interviewed in the NPR recording). These psychiatrists fall under the first camp, in which they feel that the bereavement exclusion should be eliminated. For various reasons, mainly though because they feel that many people experiencing grief are undiagnosed and have a higher incidence of suicide if untreated. So in their world labeling clients right from the start as depressed, seems to be their panacea.

_________________________________________________________________

Bereavement Related Depression Identical to Other Depression Types
From Medscape Today, December 4, 2008 (http://www.medscape.com/viewarticle/584829)

Major depression related to bereavement is essentially identical to major depression brought on by other stressful life events, suggesting that it should not be excluded from standard depression diagnoses, new research suggests.

Currently, the Diagnostic and Statistical Manual of Mental Disorders, 4th ed (DSM-IV) assigns special status to bereavement-related depression, claiming it is distinct from all other depressive episodes. However, these latest findings challenge this assertion.

"Depression that occurs in the context of the loss of a loved one is essentially identical to depression that occurs in the context of any other negative event or loss," study coauthor Sidney Zisook, MD, from the University of California, San Diego, told Medscape Psychiatry.

The study, led by Kenneth S. Kendler, MD, from Virginia Commonwealth University Medical School, in Richmond, was published in the November issue of the American Journal of Psychiatry.

"If a bereaved person's depression otherwise meets criteria for major depression, it should be taken seriously, diagnosed as major depression, and treated accordingly, rather than continuing to use the bereavement-exclusion rule and treating this as 'normal grief,' " said Dr. Zisook.
_______________________________________________________________

 
The actual NPR recording is attached below. You can see a transcript in this link, but I highly encourage you to press the play button on this link to hear the 8 minute NPR recording.  
 
Is Emotional Pain Necessary
by Alix Spiegel, National Public Radio

http://minnesota.publicradio.org/features/npr.php?id=128874986


The premise of the NPR broadcast that caught my attention was simply..... is emotional pain necessary? The broadcast opens up with a woman who lost her only child to a drowning accident, and though this was 20 years ago, emphasis TWENTY, she is still grieving and still sounds very broken up by this life altering loss. That struck me immediately, because I related to all the things she misses, she no longer sees her child's fingerprints around the house and the list went on. This mom and a Harvard researcher would argue that feeling emotional pain is crucial in order to process the devastating loss and to eventually find ways to cope. That medicating this feeling away is not the answer. What troubles me about removing the exclusion criteria is that this is feeding into our quick fix society. A society that doesn't want to see pain, that wants to pathologize something that unfortunately is NATURAL (when we lose someone it is painful, it has to be, because if it weren't then what does this mean about us, our relationship with that person, and more importantly the overall health of us as human beings). What makes us unique from other living creatures is our ability to not only think, but to feel and be able to express it verbally in words. Medicating and squelching these feelings should be red flagged as UNNATURAL. I honestly believe that if people who are grieving will now be immediately labelled with a depression diagnosis this will accomplish many things such as: 1) it will send a direct message to an already unhealthy society that grieving is bad and abnormal, 2) it will rush the grieving process, which really varies by the individual, and 3) by potentially medicating someone, this could in fact harm the grieving process, because unless emotions are felt and processed, they will eventually resurface at a later date and potential be even more volatile.

The pro-exclusion camp feels that if individuals came in to see a doctor for a broken bone, that no doctor would NOT treat the pain. In essence they feel the same is true for mental health pain. That it should be medicated appropriately. I understand the thinking behind this, and certainly agree, some people experiencing grief are truly clinically depressed and may need to consider medication. However, this breaking a bone analogy doesn't work for me at all. Sure if you break a bone, you need pain killers, other medical attention, and physical therapy most likely in order for you to heal from this trauma. However, the trauma from a loss requires different medicine. In fact, the medicine needed to heal from a grief trauma is much MORE time consuming, requires greater resources, and for the most part the medical community can not devote or create what is needed to heal this problem. Why? Because to heal from a traumatic emotional loss requires time, patience, love, unconditional regard, access to talk to a trusting person, and to find a way to feel safe again. I ASSURE you, NONE of this can be found out of a prescription bottle. I wish it were that simple, but it isn't, and any clinician thinking it is most likely hasn't experienced a true loss. I would like to quote Dr. Frances, the famous psychiatrist and a former editor of the DSM. From Frances' perspective, "if you can't feel intense emotional pain in the wake of the death of your child without it being categorized as a mental disorder, then when in the course of human experience are you allowed to feel intense emotional pain for more than two weeks?" Or as Mattie's oncologist wrote to me tonight, "YOU GRIEVE AS MUCH AS YOU LOVE." Well stated!

I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "On my walk yesterday morning I was listening to a discussion on NPR about grief. The topic was discussed because of a planned change in the next edition of the Diagnostic and Statistical Manual (DSM) of Mental Disorders. I struggled with this change. The gist of the story is the next edition of the DSM has removed the "bereavement exclusion" of major depressive disorder. Basically, now, those who are experiencing grief can be considered to have major depression if symptoms such as loss of appetite or difficulties sleeping (etc.) last greater than two weeks. I can imagine these symptoms persisting long after two weeks with the loss of a loved one and I question this narrow definition of grief. Those who argued for this change in terminology thought that the dangers of depression outweighed leaving the exclusion in place. Anyway, despite my disagreement with this new DSM plan I wanted to share the following quote with you because I think that it speaks volumes. The woman in the story (who also disagreed with the new version of the DSM regarding grief) lost her only child, a little girl, twenty years ago. What she said made me think of the two of you...


"I grieved her just as hard as I loved her."

I'll say that again.
You grieve as much as you LOVE.

I know how much you loved Mattie...and still do. When a time comes or a person remarks or you read a book that says grief should last "only so long" please think of this statement. Your love for Mattie is immense. And your grief for him immense as well. Thinking of you, this Tuesday, and every day."


The second message is from my friend, Charlie. Charlie wrote, "Vicki, I don't know how you write the blog each day and I don't blame you for wanting the break. Peter, I have to say I admire your courage in putting it out there as Vicki does; you both have a level of courage that few can match. I don't know why so many believe that men don't feel, don't hurt, don't cry even if those tears are inside. Generally women are more supportive than men in grief situations; so many men have been taught to hide or surpress their feelings of sadness that that the rest of us often forget that men feel pain too even though they may not show it. I am sorry for your loss, I wish that Mattie were here to share this summer with you and I am also sorry that you don't get the emotional support at work that would make it a little easier to bear. We've been told so often that men grieve differently; that they are "doers" that people forget that men are first people and that each person grieves differently and in their own unique way. Making assumptions about any group of grievers is a mistake as it is an individual path. So today for this short time, know that I am willing to walk beside you, to tell you that I miss Mattie and the stories you have both shared and that I wish he were here with you to create new ones. I hold you and Vicki gently in my thoughts."

Monday, August 2, 2010

Monday, August 2, 2010

Tonight's Picture was taken at one of Mattie's favorite "adventure" places, Calvert Cliffs, in southern Maryland.   We used to go there and spend a day, as it is about a mile and a quarter walk through beautiful woods and along a swamp, and then empties out on a beach on the Chesapeake Bay, where if you look carefully, you can find fossil shark's teeth.  We would pack a picnic lunch, and drive the two hours each way, then walk through the woods down to the beach, sit, eat, and explore and most importantly enjoy the experience together.  Mattie was always very energized by this trip, so we would go there a few times a summer and enjoy.  What special moments those were, and more importantly, how glad I am that we had those moments together.  Just look at him: he's full of life, excitement and clearly having just a great time! No electronics, tv, flashy games or craziness... just a boy, his shovel, the water and the chance to find a prize in the water!

Poem of the day: Anniversary day by Charlie Brown


It's an anniversary you say
That should be a happy day.
Then tell me why you look so sad
And why this day seems so bad.
For this was his diagnosis day
Our dreams have gone astray.
Our little boy is no longer here
And every day now brings a tear.
I know it's hard but don't look away
Just help me through this anniversary day.


Vicki asked for a break tonight from writing, and so she asked me to share some thoughts with you. We remember these trips to Calvert cliffs so vividly. We would start mid-morning after preparing lunch, and then spend time talking, joking and observing things on the ride down to Calvert Cliffs. Mattie was a real trooper on these car rides and would usually spend some time watching a DVD video, or being read to or just chatting with us.  Mattie rarely slept in the car and if he did, it would be for either 15 minutes at most and/or just as we arrived home.  Having a child who was "always on" was a challenge from day one, and one which exhausted us.  In retrospect, we are fortunate to have some many energizing experiences although at the time it seemed debilitating.  It's amazing how events in your life can completely change your viewpoint and values.

We find ourselves these days wishing parents a good summer and unconsciously asking them about their plans, almost as if to remind them not to squander their chances to spend some quality time and make wonderful memories with their children. Summer is very hard for us since this is the first summer without Mattie, and the first summer in two years where we were not focused on Mattie and his illness. I find Mondays very hard at work since people typically ask me how was my weekend. I used to answer in the old manner (pre-Mattie's illness and death) but now I mostly just tell them "it was not good." I find that few people now ask me about our weekends or plans outside of work. Although we want to be happy for other people, our own joy is absent, and what is left are the memories of what once was, which are quickly dashed by the painful memory that Mattie is gone. I believe that only two or three people in my office ever let a conversation stray to the topic of Mattie or his loss, and although those 2-3 are supportive, I am hurt that others never want to talk about it. Can you imagine that if you're a parent, and you are never asked nor can you talk about your children?!  It's just crazy and I know it impacts me in a negative way.

I find that each night when Vicki sits down at the computer to write the blog, she has a hard time getting started.  The routine usually entails searching through our thousands of electronic pictures, searching for some inspiration that will help write at night. The journey is always a hard one as we have file folders from 2002 and for each year until present. Whenever I go back in years, and open a folder, I am sometimes overwhelmed by the flood of images and memories as each thumbnail opens for a particular month and I start to focus on the pictures. It's like hitting the fast-rewind button as I am suddenly wisked back to the year, the month, the location and the time when these images were captured. I see the images of Mattie and although I am there trying to select a picture for the blog, I cannot help but remember our dear, sweet boy, and that's when the emotions can get the best of you. But the picture search each night forces me to look again at Mattie, and it helps to remind me of all his traits, his face and sweet smile, his eyes and of course his energy and love of life. Mattie's imagination practically jumps out of each picture, and in many of the images it brings back memories long since stored away, about the particular context or situation he was in when the image was shot. It brings both smiles and tears, but is all that we are left with these days.

I would like to end tonight's blog with two messages. The first message is from my friend Charlie. Charlie wrote, "The mind builds pathways to help us cope with things so we can do them automatically, without thought. Just like driving a car to work, you start out and then suddenly you are there without really being aware of the trip. So it is with situations like this. You learned to do things automatically and when your mind starts that process, triggered by a date or an event you find yourself, back in the cancer care mode. But of course, Mattie is no longer here to receive that care so you suffer the shock of his loss all over again. With time, as you no longer travel that pathway to the hospital, and all that entailed, that automatic response will diminish. I hope that you can hold on to the more positive pathways while leaving these really painful ones behind. I do think that you are right and Mattie was riding along with Peter. I think Mattie was trying to tell you that he is with you but in a place beyond the pain and hurt that cancer causes in your life. Today as I head off for a few days away, I will take you and Peter with me in spirit and send you healing wishes. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "So much has filled my head and heart since reading the weekend updates. Like a roller coaster, our emotions ebb and flow with the moment when grieving. I had to take a deep breath when I read that it was Aug. 8th when you learned the full diagnosis for Mattie. You know the special significance of this date for me. Some days when I read the blog, I wonder, how do Vicki and Peter do it? Today I know why because of children like Abigail, Jackson, and Tommy. These young people, along with all the others, Katarina, etc. never forget. Tommy said it beautifully when he spoke of courage and having never met Mattie, yet, he knew how to remember him. Tommy did capture your story eloquently. Each of your stories attached to the daily picture speaks of Mattie's courage and purpose while fighting his battle. I agree that I don't know if I would have the ability to deal with cancer the way that Mattie did. Of course, part of his resilience came from the love and devotion that Peter and you showed him. He always knew that he was never alone and we know that you are never alone. I loved what you said to Peter when he opened the back door of the car. Yup, another sign of Mattie! I could picture your face when you looked into the living room to see the Legos put away. It does take one's breath away to realize that you must make room for new experiences when you are missing Mattie so much. Some things are best left to another. Peter has been your rock in this instance. I am in awe of the love and compassion that you both have. Thank you for sharing the photos of your birthday party. It was very special of Tina to host it and the necklace is a treasure to behold. So clever to give you a catalog of each giver and bead, just like a box of Whitman's chocolates. You'll always know which one you'll need on a particular day."

FRIENDS by Nancy Heller Moskowitz

What makes a friend?
Some days it seems like they never end.
I didn't want to celebrate,
And all these ladies, couldn't wait,
To surround me with love and comfort.
They came with stories, laughter, and cheer.
Did someone remember to bring the beer?
And gifts that captured my heart,
A necklace that could only start
to take my breath away.
It was then that I realized,
I am blessed with ladies,
Who pass the test,
of hearing my needs,
Even though not spoken!

Sunday, August 1, 2010

Sunday, August 1, 2010

Tonight's picture was taken in August of 2008, during Mattie's first week of chemotherapy. Mattie and I were examining the huge IV pole, which over time we became so accustomed to, as if it were another appendage. As I look at this picture tonight, just by looking at the sight of the bag hanging on the pole, I know Mattie was receiving Doxorubicin. I know for two reasons, a brown plastic bag always covered this particular form of chemotherapy to protect it from light, and the other reason is that I can see the RED liquid running through the tubing. This first week of chemo was very hard for Mattie, because until we found the right dosage of anti-emetics, he experienced a lot of nausea and vomiting. Despite our world being tossed upside down back in August of 2008, Mattie handled this really with a great deal of courage and bravery. I am not sure I would have done so well!

Poem of the day: Not much by Charlie Brown


It doesn't take much
Just a word or a picture
The sound of children's laughter
Any day of the week
An empty chair
A familiar song
A baby crying
The call of "mom"
Any and all of these things
Remind what was mine
And how much I miss you
It is hard not to pine

I felt the need to search through my pictures from August of 2008. Why? Because on August 1, 2008, we learned that Mattie did not only have one tumor, but two. A CT scan, which was done on August 1, to rule out tumors in Mattie's lungs (typically the next place bone cancer migrates to is the lungs, which is why the CT scan was performed), happened to accidently capture pictures of Mattie's leg arm. It was in this accidental scanning, that a large tumor was revealed in Mattie's left arm. August l, 2008 is a day I will never forget. Peter and I were already shell shocked learning about the tumor in the right arm, but when we learned about a second tumor, we were devastated. Unfortunately for Mattie, the devastation just kept on coming, until we received the FULL diagnosis of FOUR tumors (right arm, left arm, left wrist, and right leg) on August 6, 2008. Though is it NOT August of 2008 anymore, we can remember that month and all the feelings associated with Mattie's diagnosis. These memories trigger an automatic physical response in us, as if our minds and bodies have been trained and programmed to react in a given way.

Yesterday Peter told me a story at dinner about his automatic response he had yesterday after he parked his car. He ran out to do chores yesterday morning, and when he got back to our complex and parked, he popped out and without thinking, opened up the back door. A rather automatic response in a way, because this is what Peter did for many years, to help Mattie out of the car. I am not sure why Peter did this yesterday, versus any other day or days, but my response to him was Mattie was apparently driving with him today, and he felt his presence and let him out. It is a major adjustment to go from a household with a child in it, to one without one. There are times when we think in terms of three, but then catch ourselves because we are back down to just two.

We went out for a little while this afternoon and when we got back home, I happened to glance over in the living room (a room I no longer spend time in!) and noticed that many of Mattie's Legos were cleaned up and MISSING. I let out what a comment of shock! Ironically last night Peter and I talked about cleaning out a corner of the living room, and reclaiming back our coffee table. Well Peter absorbed that conversation, and decided to take on some of the Legos and box them today. I realize this has to happen, and perhaps in some cases it is better that Peter just deals with some of this. Fortunately I know Peter understands that there are some items that are off limits to discuss or touch right now.

We had dinner outside tonight, and just like last night, Patches came out to join us and hopped up on Mattie's chair, the chair between us. While outside, we could also hear JJ (our resident Jack Russell Terrier) stopping by. JJ lives at the other end of our complex, yet each day, he comes to our doorstep looking for, guess who? Mattie, his play buddy! Mattie and JJ spent a great deal of time together, and I find it fascinating how JJ migrates back each day in search. In a way, it is very touching to see his loyalty.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I know it is tough and some days it just doesn't seem like it will get any easier to drag the weight of despair, but for most grievers the burden does eventually lighten. I can tell you that the evidence shows that most grievers become ill somewhere between 9-18 months after the death of a loved one; death and grief suppress the immune system and illness is the usual result. I know that seems to be a good reason to isolate yourself but as you know being around those who you care for and care about you help you to recover your physical and emotional health so as soon as you and/or Peter feel better, try to get back out as much as you are comfortable. The essay is wonderful and he is right, it takes a special kind of courage to fight an invisible foe. A fire, even a bully is a visible foe to pit oneself against. But a disease like cancer is something far more sinister and it has the ability to return and take what you value the most. As always, those of us who love and support you wish we could replace what this disease has stolen from you. As you bear your burden today, I send you my strength to help make that load a little easier to lift. I hold you gently in my thoughts."

Saturday, July 31, 2010

Saturday, July 31, 2010

Tonight's picture was taken in April of 2005. Mattie was three years old. Each April, around Mattie's birthday, the US National Arboretum has a magnificent display of azaleas, with a display that seems to go on for miles. In 2005, we took Mattie to see these colorful and vibrant gardens, and as he and I were walking hand and hand, Peter must have snapped a picture of us. This is one of many things I miss about Mattie. I miss holding his hand and the tenderness one can only receive from a child.


Poem of the day: Emotions 2 by Charlie Brown

Sometimes I think
What's wrong with me?
I can only feel the sadness
That's where I seem to be.
Since the day that I
Lost my little boy,
It's so hard for me to feel
Happiness or joy.
Those emotions just seem
To be so far away,
I wonder if I'll feel them
In my life again someday.
But right now I think
My heart is just broken
And when you see my smile
It is only a token.
Because grief swallows happiness
And leaves very little
Sorrow and sadness on each side
And me in the middle.


I would say today was a tough day for Peter. When I am not feeling well or doing well, this impacts him greatly. I have been feeling run down for several days now, and not sleeping well at night, which isn't helping my mood. Peter and I tried to go out for a bit today, but I simply wasn't up for much. I spent the afternoon dealing with laundry. Laundry for us has always been an adventure, because it is located in the basement of our complex. This is one of the downfalls of city living. How I managed laundry in the days I had Mattie in tow, and when every single item of his seemed to get dirty faster than I could clean it, is beyond me. However, today in the laundry room, I bumped into the older lady I told you about weeks ago. The one who gave me a hug and said I was a nice person to listen to her stories. She told me more about her life today and all the people she has had the opportunity to work for while living in DC. On her way out of the laundry room today, she came up to me, and wanted to touch my eyebrows. She did not tell me she was going to do this, but just did it. That was a first for me! I am not sure why she was compelled to do this, but frankly I allow older adults far more leeway, than I would someone my age or younger.

Peter and I had dinner together on our deck tonight. But we did not dine alone, Patches (our cat) came outside with us, and hopped up on a chair and literally sat between us. Reminiscent of where Mattie would sit. In fact, our deck table can fit four chairs around it. However, Peter always removes one chair, and keeps the table set up only for three. I find that very symbolic of how our family used to be!

This evening as I sat down to write the blog, I could see Ann was sending me pictures through email. So periodically I would stop writing and check what she sent me. One set of pictures was almost overwhelming. They were pictures from the camp musical, like the one I saw last night. However, these pictures were taken in July of 2008 and July of 2009. When I opened up the 2009 picture, here is what I saw! A picture with Mattie, Jackson (Abigail's friend), Mary (Ann's mom), and myself. Last night as I sat in the auditorium, I did indeed look over to where we sat last year. I could picture it as if it were yesterday, and I remember how much Mattie enjoyed the show. He was literally dancing in his chair! It is quite a commentary of what can happen in one year's time. I told Ann that....."This is a tragic story told through pictures, and unfortunately we are the main characters in this book."


This week, as you know, I had the good fortune of having a birthday party planned for me. At the party, in addition to the beautiful and very meaningful beaded necklace that I received, I also received some other gifts. One gift was in the form of an essay. My friend, Liza's (a SSSAS mom and our co-chair of the Walk logistics committee this year) son wrote an essay on COURAGE. Liza's son, Tommy, is a rising junior at St. Stephen's and St. Agnes High School. I have only met Tommy once, and though he technically doesn't know us, he seems to have embraced our story and has captured his thoughts and feelings quite beautifully in this essay. The essay is very touching, meaningful, and certainly deeply feeling. Tommy seems to understand the profound loss Peter and I are faced with, and his question and answer to Mattie's purpose on this earth caught my attention. When I first read the essay, it did make my cry because Tommy highlighted Mattie's courage and bravery. I couldn't agree more, children battling cancer are special people and their families supporting them in many ways are unsung heroes. I feel this was a special gift to receive on my birthday and I attached Tommy's essay below so you could have the opportunity to see what was on the mind and heart of this 16 year old.

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Courage by Tommy May

We all have courage. We read about it in school, and hear about it on the news, and we even find ourselves hoping that we have courage to do something. But what is courage? Is it going back into a fire to save peoples' lives? Or is it the kid that sits in the back of the class, that's bullied, but can still find it in himself to go to school because he has dreams and aspirations? Sure we read and hear about it, but it's something that cannot be taught, it's something that "you" have to find out. We all have it somewhere deep inside. But that's why its called courage, because it takes something more to be able to use it. Courage comes in many forms, whether it be the fire fighter, or the bullied kid, but to me one of the most courageous things to do is to fight cancer. Cancer plagues our world with sadness and hardship for millions of families, but how they get through that, that's courage! To fight something that you cannot see, have never seen and will never see takes something. You will get sick, you might not even know why you feel sick, just that there is something making this happen to you. But to be able to fight that is unbelievable.

There was a little boy at our school, his name was Mattie Brown. He died of cancer earlier this year. We would bring dinners to his family before and after he passed, and I remember the eve of his passing and I'll never forget what I said. I said to my mom that I think everyone dies for a reason. That God makes no mistakes. He has created us for our purposes, and to fulfill those purposes. Immediately after saying this, I remember thinking to myself, well then, what was his purpose? How could he have already fulfilled his purpose? Then I said to my mom, I think he was put on this earth to inspire us, to inspire us to save others like him, even though we could not save him. That someone will be inspired to make a cure for cancer and raise amazing amounts of money to make sure people get the medical attention they need. I'll never forget that night. I honestly never even met him, whenever we would drop food he was either sick or I was at school. But even just hearing my mom mention him and talk about her visits, he touched my heart, and has changed the way I look at things forever.

RIP Mattie Brown
--------------------------------------------------------------------------

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I don't know how you could have sat in that auditorium and not reflected on last year and Mattie's attendance at the show. Abigail was his friend and I am sure in her heart she was missing him too. There is a fair amount of research on traumatic grief and it does in fact show changes to brain function and to the immune system as well. So there are physical changes that go along with the emotional ones. Apparently some of that can be helped by "retraining" the brain through meditation or Cognive Behavioral Therapy but it is a process and it takes time to create and reinforce new pathways. This might be something for you to try when you are ready. Those pathways for peace, happiness and learning are still there, but like an unused path through the woods, they are overgrown and almost out of sight. I think it was very astute of you to hold off on your comments about Mattie and to recognize that there are times we all like to be unique in someone else's thoughts, however, I do remember you making reference to Mattie as "shrimp boy" and how you tried to get him to continue to eat them as he wasn't eating all that well at that point. As I practice today I will send you my strength to help you through another day. I hold you gently in my thoughts."

Friday, July 30, 2010

Friday, July 30, 2010

Tonight's picture was taken in March of 2009. I honestly can't recall where this hat on Mattie's head came from. It may have been given to him by Linda (Mattie's childlife specialist). The beauty of this hat was it came in many pieces, not unlike a Mr. Potato Head. Mattie got to construct and design his own hat, by adding pieces to this snapping in plastic system. I loved the crazy concoction that Mattie designed, and only he could get away with wearing it! To me this photo highlights Mattie's whimsical nature despite being wheelchair bound and physically ill from chemotherapy.  I assure you there was a lot to be unhappy about, but if you worked hard to engage Mattie, he normally gave in, and in the end he was always the life in any hospital room.

Poem of the day: Words by Charlie Brown

It's your "new normal"
You should be "moving on"
These words seem to be
Part of a big con
What sort of normal
Can there be
When the physicality of a boy
Is replaced by a tree?
Or moving on,
On to what I say,
When I'm so sad
I can't think, let alone pray.
There are lots of these phrases
But they're not helpful to me
They don't tell me how to stop hurting
Or cease my crying you see.
What does seem to help
For a while at least,
Is have a friend sit and listen
That gives me some peace.
So for those who can do it
I want to say
Thanks for your kindness
You've made my day.

I began my morning by reading Charlie's poem, Words. I particularly liked how she highlighted my two least favorite words or phrases in my life.... new normal and moving on! It is impossible to accept our life as normal now, because if you think we can return to normal, then that means you would concede that it is okay for us to have a tree to turn to instead of Mattie, to have only pictures and things to reflect upon to capture the essence of our son, and that memories of our days of being parents and having a child's love are enough to carry us forward and snap us back into normalcy. Clearly, any one who is a parent or who spends a significant amount of time caring for children, realizes that none of this is acceptable and wouldn't be something one would self select.

I did not have a good night of sleep, but despite that I was unable to rest this morning, so instead of spending the day in isolation, which would have been an easy choice, I met Ann and her family for lunch. At the restaurant, I happened to run into a SSSAS mom. In addition, her son and Mattie were on the same soccer team together. We exchanged some light conversation, and then she began to tell me that her son thinks of Mattie all the time, and as she continued she began to cry, which for some reason impacted me. I then began to cry as well because I found it very touching that Mattie was still remembered by her son, a little boy who Mattie did not spend a great deal of time with.

This evening I attended a camp musical show. Abigail and her friend, Jackson were in this show together. The ironic part is last year at this time, Mattie was alive and attended Abigail's camp show. It was an odd feeling to be sitting in the same auditorium a year later, knowing that Abigail is one year older, becoming her own person, and enjoying the fun of singing and dancing, while Mattie is no longer with us. When I am around a room full of families and children, my feelings of being different become more profound. In fact, I almost feel paralyzed in these circumstances. You most likely couldn't tell this by viewing me, but I can internally feel I am building a wall of defense. As I was watching the show (which was wonderful and what I love about Abigail is she has a great stage presence and is always smiling to her audience) I observed those around me. They appeared to be happy and engaged, while I felt as if I no longer could relate to this feeling, and to some extent I almost feel as if I am intruding into a foreign world. I came home tonight and shared my jumbled up feelings with Peter, who naturally got it right away. He gets it so much, that he is very cautious about inserting himself into such events and situations. I on the other hand, I try to go into these events open and willingly, but as is typical I always have a delayed reaction to them. In fact, Peter and I got into a long dialogue tonight about traumatic grief, and how trauma can alter the physical make up of the brain. I am not making that up, there is a great deal of research on this scientific fact. Taking it one step further, I believe that the trauma of losing Mattie has altered how both Peter and I take in information, process the world around us, and in a way has wiped out the wiring for happiness and internal peace. Sounds harsh I am sure, but we both came to the same determination and conclusions tonight. We are lucky that we understand and can articulate our feelings with each other.

During Abigail's show, we were awaiting Katie's (Ann's older daughter) return from her two week sleep away camp. Katie arrived in time to see her sister's show. I couldn't see Katie entering the auditorium, but I could see Abigail visibly smiling and glowing on stage. When I saw Katie sit down next to me, I put two and two together. It was a very sweet home coming to observe, and in fact NO words were necessary. The exchange of smiles spoke volumes. After the show, I joined Ann and her family for dinner. I sat near her son, Michael, and my other 10 year old friend, Katharina. I was thoroughly entertained by two ten year olds at dinner, and got to hear all sorts of jokes! I also observed Abigail try shrimp and actually enjoy it. When I heard her mention this tonight, it brought a smile to my face. I was going to tell her that her statement reminded me of a Mattie comment. But I held back doing that, because sometimes I feel that one's own discovery should be appreciated without tying it to someone or something else. None the less, when Mattie first tried shrimp at one of Georgetown University Hospital's restaurants, Mattie loved it. In fact, that particular day, Ann and I nicknamed Mattie, "shrimp boy." He wasn't eating anything that day, but seemed to devour shrimp. That was a special day in a way for Mattie, because he survived a whole morning of SCANS, and as anyone who has ever done extensive testing with a child, knows the stress associated with waiting around, not to mention the incredible fear of entering intimidating machines. However, for me the worst of these scan days was waiting for the test results, which was like hell on earth. With each successive scan day, the results only got worse, and over time, Ann began coming to the hospital on those days so that I wouldn't be facing that nightmare alone. She lived through that torture with her brother, and now that I look back on things, I am not sure how she took on this intensity with me after having lived through it once. Scan days weren't easy for Peter either. Peter had his own nightmare going on, he was at work and worried about what was going on at the hospital with us.

Dr. Bob snapped a picture of all of us after the show. In the front row are Jackson, Abigail, and Michael and in the second row are Helen (holding Jackson's build-a-bear from yesterday), Ed, Ann, Tanja, Vicki, Katharina, and Katie.





I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Grieving is different for each person and we all walk our own path through it. At the workshop I was at last week, a speaker told the story of this older couple who had recently lost their adult son. Friends told them they needed to get help and so they went to a therapist who told them they needed to move on (those words again). The speaker who was sitting beside this couple on the plane asked when the son had died and they said "two weeks ago." He told them they were amazing, but that they were probably still in shock and to give themselves time. Can you imagine that? "Move on in two weeks?" Needless to say, there are some very unhelpful, uneducated therapists out there. I am glad that the plan for the foundation is moving forward and that you are in agreement with the Director of Media Relations at Georgetown about what that should look like. I think that will help you guide your steps into something rewarding and important. Although I am sorry you did not sleep well and you were exhausted, I bet your nap in that chair was relaxing. Being around nature and hearing the sounds G-d created is good for one's inner balance. I hold you gently in my thoughts."

Thursday, July 29, 2010

Thursday, July 29, 2010

Tonight's picture was taken in August of 2009. It is hard to believe that last August, Mattie was still with us. By this point, we knew Mattie was terminal, however, despite knowing this diagnosis, when I saw his smiling face, I had trouble accepting the reality. Probably so much so, that it wasn't until the nurses at the hospital told me Mattie was dying, did I then understand the fight was over. Up until then, I still believed we could keep him hanging on. I will never forget that feeling of complete shock, a feeling I have grown accustomed to for over a year. A feeling that almost becomes hard wired into me, that it is hard to remember life when I did not live in such a hyper alert state.

Poem of the day: Conflicting emotions by Charlie Brown

So hard to celebrate
One more time
A day that seems
No longer mine
All of my days
Are tied to yours
And all of those "rooms"
Now have closed doors
I'm trying to find
Someway to be
Both happy and sad
And it is hard for me
My life still has much
But I can't be glad
With missing you and feeling guilt
I mostly feel sad
I appreciate my friends
And all that they do
But there is still a big hole
It is so hard without you.


Since Mattie's death, I occasionally have very bad nights of sleep. I got about four hours of sleep last night, and today, I wasn't feeling in the best of moods or feeling physically well. When I opened up my e-mail today, I read Charlie's poem. Conflicting Emotions is a very appropriate name for this poem and for how I am feeling. I find that happy occasions and social gatherings can now sometimes have the opposite effect on me. I fully realize that the issue lies with me, and has nothing to do with others or the event per se. But celebrating internally now doesn't feel right. So on some level there is guilt associated with having a birthday party. Last night, after many of the party attendees left, there were about six of us who remained to sit and chat over food. Ann was commenting about how her mom, Mary, has a hard time understanding how someone who is grieving can "move on." Mary lost her son a little more than two years ago, yet in many respects this loss is very real and very fresh to her. Mary and I share this commonality, we both have issues with the term and concept, moving on. However, I realize NOT all people who have suffered the loss of someone close to them feel this way. Which further highlights how grieving is SO different for each person, and therefore when interacting with someone who suffered a loss, I can't assume this person will feel or act the same way as myself. Though I must admit understanding Mary's feelings, helps to normalize my own. Having these conversations with friends, I find very helpful, and being able to share these feelings with someone is a gift. The gift of time, a listening ear, and understanding are much better than anything you could ever buy me.

As many of you know the terminology, "new normal," used extensively in the social work community when helping newly diagnosed families, is a concept I really dislike. Moving on is a close second! For me, "moving on" is disrespectful and implies that Mattie's loss was something that I could rationalize, shelf some where, and re-establish my life. I had this terminology discussion with Ann this weekend, as she was trying to help me out of the funk I was in, and she tried to have me visualize "moving toward" something, and not necessarily on from something. So I continue to give that great thought.

I had a wonderful email exchange today with Marianne, the Director of Media Relations at Georgetown University Hospital. Marianne has been extremely helpful to Peter and I and the Foundation. We very much appreciate her willingness to share her time and expertise with us, and today, she helped us brainstorm some next steps for the Foundation. Mind you, when she was highlighting her thoughts, I hadn't shared my thoughts for the coming year with her. When I read what she wrote, I actually got excited. There is a word I rarely use now! But I got excited because Marianne was suggesting ideas that I embrace and would love the opportunity to follow up on. As these ideas begin to unfold and become a reality, I will certainly highlight them for you on the blog. But I guess what I am saying is that Marianne made me feel as if my ideas really did have merit.

Around lunch time, I asked Peter whether he could leave work for about an hour or so, and have lunch together. Which is what we did! Poor Peter, when he sits down with me, he just never knows what he is going to get. Peter started talking about how Mattie and I shared a very close bond, and as he began talking, I began crying. In fact, lately Peter and I haven't met for lunch when I did not start crying. Meeting for lunch for us is very important, because this is the time of day when we are both fresh and have the energy to talk about difficult issues. By dinner time, we are both usually spent and talking about our grief is just too painful at that point.

In the afternoon, I went with Ann, her cousins, and Abbie and her friend, Jackson to the mall. They wanted to go to the Build-a-Bear Store. When we got to the store, we met up with Tanja and Katharina. Out of the corner of my eye, I saw Mattie's wheelchair. Seeing that chair always stops me in my tracks, because Lord know, who I am going to see in that chair. Naturally though, it was Katharina who is recovering from her knee surgery. In the store, each of the children picked their animal that they wanted to create. Katharina held my hand and had me pick the animal she should build. I selected an owl! He just caught my attention. For the next 45 minutes or so, I watched the children build bears and an owl. They had the animals stuffed, got to select a fabric heart to place into the stuffed animal, picked out an outfit for the animal, and even made a birth certificate. Mattie went to this store twice. Once for a birthday party, and once at the Nat's stadium, where he created a Nat's puppy! After the construction process, we then went for frozen yogurt. A foreign concept in the DC area really, but a major reality in New York and Los Angeles, two places I grew up in. So Ann introduced me to something today that reminded me of yogurt my mom and I would get in New York City. Funny how tastes can bring you back in time!

When we returned back to Ann's house, I sat on her porch and literally fell asleep. I am so tired, and the sound of the birds, and wind blowing through the trees apparently knocked me right out. I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As always I am profoundly impressed by the strength and impact of the blog. We all look at life a little differently now and are willing to step out of our comfort zone and take risks because you've reminded us how fragile and precious life really is. I really am impressed and grateful to Danelle for stepping up and saying something to that woman at the bus stop and then following through with a call to the transportation office for the school. I am sure that she will save some child from injury. While we rarely stop and thank anyone for preventing a catastrophe, in this case, I would designate her a heroine for going the distance on this. The party that Ann and Tina had for you was lovely; you certainly deserve to celebrate your day and I hope you can eventually find your way back to that without any reservations. The necklace is beautiful and totally unique just as you are; what a wonderful gift to receive from a very special group of friends. May today bring some more emotional sunshine into your life. I hold you gently in my thoughts."

Wednesday, July 28, 2010

Wednesday, July 28, 2010

Tonight's picture was taken around my birthday in 2009. Linda (Mattie's childlife specialist) gave Mattie a cake, so that he could give it to me! This was my last birthday I spent with Mattie.

Poem of the day: Little Boy Things by Charlie Brown
What's your favorite?
Anything with wheels
From cars and trains
To buses and planes
You loved them every one.
Now your wagon sits abandoned
And your cars, they gather dust
I cannot bear to see
How they will eventually rust
Where is your laughter?
Your smiles and your tears
I still want to be your mom
Sharing hopes and dreams and fears.
But now my arms are empty
And my heart is full of tears
I hate the thought of facing
All those childless years.


Despite my very great misfortune, today was a day where I once again was shown and experienced the beauty and generosity of friendship. Through Ann, I have had the wonderful opportunity to get to know her neighbor Tina. Some of you who read the blog regularly, may remember that recently I have been invited several times to Tina's house to swim in her pool. Tina and I haven't known each other very long, but when she found out it was going to be my birthday, she coordinated and planned with Ann a birthday party at her house. Tina and Ann outdid themselves tonight, and the many wonderful RCC moms, SSSAS moms, and some of our Georgetown University Hospital family who attended helped to make tonight a very memorable occasion.

As I told Ann last week, as this party was being planned, I did not feel very much in a party mood. I also told Ann I did not feel like there was much to celebrate. Ann heard me, but strongly feels that my life is worth celebrating. It was a special evening to reconnect with several moms who I unfortunately do not get to see as often as I would like. As I was explaining to my Georgetown University Hospital family who was in attendance at the party, it became very evident to me, that many of my friends I met through being Mattie's mom. Without Mattie, I would never have had the opportunity to cultivate these friendships, in many ways, Mattie brought a new world to me, and though he isn't physically present in my life, his handy work is still going strong.

I would like to share some photos from tonight's party with you!

In this picture you can see that Ann is handing me a group gift. She explained the gift and also handed me a scrolled up piece of paper. I joked with her and asked her if she was handing me a diploma.

I sat and opened up this amazing and extremely sentimental gift (sentimental, because these ladies know that I always wear Mattie's beads that he strung together for me on my wrist). The gift was a string of beads. But not just any beads. Each attendee at the party, went to a bead store in Old Town, Virginia and hand picked out a bead that was strung on this chain. Each bead has its own shape, color, character, and significance. Reflective of the friendships in my life.

When I got home tonight, I opened up the scroll and laid the beads on top of it. I wanted you to be able to see the details of the beads. On top of the scroll it reads:

In memory of the wonderful jewels created by your Mattie, this gift has been lovingly created by many of your friends, who care deeply for you.

The remainder of the scroll, lists a friend's name and the bead this friend gave me. There is a corresponding number, so I can match each bead to each person.

In addition to all sorts of wonderful foods, there was an amazing array of desserts. Ann snapped a picture of a birthday cupcake that came my way.

A picture of Tina and I together. Tina was the very generous host of tonight's party.

Some of our Georgetown University Hospital family in attendance. From left to right:
Dr. Aziza Shad, Katie Kennedy (aka Dorothy to Mattie, because of her shiny red shoes), Dr. Kristen Snyder, and Sarah Marshall Greene (our Angel of Mercy, who was with Mattie the night he died).

A picture of the whole group.
Front row: Tina, Ann, Vicki, and Katie
Second row: Helen (Ann's cousin), Christine, Liza, Grace, Catherine, Sarah Marshall, Kellie, and Tanja
Last row: Junko, Mary, Michelle, Marisa, Denise, Dr. Aziza Shad, Dr. and Kristen Snyder

At the end of the evening, Tina took a picture of Ann and I. Tina gave me these glorious pink roses and they smell as fragrant as they look.















I would like to end tonight's posting with three messages. The first message if from my friend, Charlie. Charlie wrote, "Forty five weeks, it seems both a life time and a blink in time. I know it seems so strange to be without Mattie. I think we as mothers gravitate toward other women with children and when you are seen as without them, the connection doesn't naturally happen. Whenever I am in a store or a restaurant, any woman entering with children seems to look around for and make eye contact with other mothers who are there. It is as if you don't have the right combination to make the connection. It happens with other people as well; I always looked for others in military uniform and made eye contact; now they don't "see me" the same way because I wear civilian clothing. It is a difficult adjustment to make but the point is that what you are feeling is real! Like other things about this whole situation, you have to find other ways of making connections now and that is difficult. As you said in your blog about the relationship between children and older adults; they have so much to give each other and yet we set things up in a way that isolates them from each other. Children need more accepting adult attention which many of our elders would be happy to provide and the elders need the energy infusion that comes from being with children. In other societies the grandparents or elders are the caretakers of the young, I believe to the advantage of both. As for the "unconscious" mom, I won't even go there. I think you said all that needed to be said on that one. Thank goodness Ann caught the boys before they made it out the door. As you go through this day, know I continue to pray for you. I hold you gently in my thoughts."

The second message is from my friend, Danelle. Danelle and I emailed back and forth today regarding what I observed and reported about in last night's blog. Danelle has had a similar observation, however, what I admire about her is she actually took a proactive stance and tried to advocate for the children who are clearly in harms way. Danelle wrote, "I was struck by the story about the mom at gymnastics. I have had a situation this week where I feel like a mom was putting her kids in harm’s way and struggled with what to do. I often drop Brian at the Pentagon City Metro and then cut back through on Joyce Street (heads from Pentagon Row up to 22nd in Crystal City). It is a pretty major cut through for people, and the cars tend to go pretty fast. A few mornings this week, this mom has been waiting at the bus stop with 5 or 6 kids (she must walk kids besides her own, which makes it even worse – she is putting someone else’s kids in harm’s way!). They appear to be waiting for the bus for summer school or something. The kids sit on the curb with their legs and feet in the street. It is a narrow street with parked cars, and the cars are already squeezing by each other. Anyway, every time I have seen those kids there, I’ve gotten nervous. It would be so easy for something to happen to them sitting like that. And I don’t think the kids should be taught to feel that comfortable sitting that close to traffic.Today I finally rolled my window down and told the mom that I thought the kids should be further back from the street, that it made me very nervous having them in the street like that. She said, “oh ok,” and I rolled up my window and pulled away. I watched in my mirror as far as I could see, but she never moved the kids back (these are younger elementary kids). Well, I thought about calling Arlington County schools about it, to see if anything could be done. Then I came home this morning and read your blog entry, and it helped me to decide that I definitely needed to call. I just called the transportation office for that school district and spoke with a very nice woman who agreed that it wasn’t safe, looked up which bus stop it must be, which driver she thinks it is, and promised to talk to that bus driver and have him say something to the mom about it. She said that if I still see it happening, to please call back. You never know if someone will take something like that seriously when you call, but I really felt like she did. I assume you guys were at Barcroft. I wonder if Ann hadn’t been following those kids out, if the person at the front desk would have stopped them, or noticed anything wrong? If anyone would have spoken up before those kids were out in the parking lot. I don’t know that there were too many parallels between the two situations but for some reason they linked in my mind and helped me decide to call. Thank you for the “prod.” Take care!"

The third message is from my friend and colleague, Nancy. Nancy wrote, "I am glad that you were able to watch the transaction between Michael and Jackson at the facility. Your stories about the children always bring Mattie to my mind and I silently picture him enjoying their play. Of course, we would trade everything to have had him be with them. It is amazing to see how Ann's children will naturally engage the elders. Kudos to them and to Bob and Ann for setting such a wonderful example. In contrast, your story about the Mom and her three children was right on target. How disturbing to see that a grown up will forget that little people like to wander or explore when they are not engaged with the environment and their responsibility for their safety. Although you didn't react directly with this Mom, you have taken a stand by reminding all the readers of the need to keep watch over their children. Finally, Charlie's poem was beautiful. I believe that the phrase Mattie Moon has become a new entry in each of our personal dictionaries. I think I shared this with you before, so forgive me if I'm repeating myself. I told you that Mattie's notecards and stamps are special treasures. These along with yesterday's comments and picture prompted me to send a note to someone. Because of the nature of my message, I chose to use one of my stash. I don't use them often because it's my way of honoring and holding on to Mattie's creation. It made me realize just how much your family was on my mind. Thank you, Mattie, for a beautiful sun! Rest peacefully and know we all think of you."

Tuesday, July 27, 2010

Tuesday, July 27, 2010 -- Mattie died 45 weeks ago today.

Tonight's picture was taken in July of 2007. Mattie was five years old. Mattie loved vehicles, all types: cars, trains, planes, and boats! As you can see, Mattie traced out a picture of a bus, but what always caught my attention in ALL of Mattie's pictures was he would draw a sun. A sun speaks volumes in a child's drawings. The sun tells us so much about our time, place, and orientation toward the world. Mattie's suns always had faces as well, usually smiling ones. I particularly love Mattie's smiling face in this picture, it matches the sunny picture he was holding. However, in this picture, you can see that when Mattie smiles his left eye seems to squint shut more than his right eye. My eyes do the same thing, as can be seen in many pictures, and it is eerie sometimes when I look at pictures of Mattie, how I feel as if I am staring at a picture of myself.  

Poem of the day: Mattie Moon by Charlie Brown


They say the light of the moon
Is only a reflection of
The light of the sun
Is that the reason
I feel so diminished by your loss?
You shined so brightly
That you illuminated all around you.
You were the sun and the moon,
And you lit up our home
Whenever you smiled.
The sun shines
And the moon glows
But they are too distant
To heal my broken heart
I miss my own Mattie Moon.

Charlie's poem, Mattie Moon, seems very appropriate as I reflect on the 45th week Mattie has been gone from our lives. As her poem accurately portrays, Mattie had a smile that did glow like the sun, and without that smile around, the world seems a little smaller, a lot less bold and beautiful, and much more ordinary. As I continue to deal with my grief, I have noticed one thing in particular. Sometimes when I am around other parents and their children, I feel invisible. Not that I am really invisible or that others are treating me this way per se, but not being a parent anymore puts me on the periphery. I haven't been able to actually describe that feeling until tonight, or maybe because it isn't a good feeling to focus upon, and therefore I try not to. Feeling invisible is not a concept that is novel to any of us, at some point in our lives, we are all faced with a social circumstance in which we feel out of place and virtually invisible to those around us. How do we become visible again? In my case, the answer to this is not so simple to generate.

I started my morning by heading to the vet to pick up Patches. When I got there, the people at the front desk of the clinic were surprised to see me. They are used to having Patches for VERY long boarding stays (when Mattie was in the hospital). Needless to say, they were sad to see Patches leave today, but I told them they would be seeing her back in a few weeks. Patches is a VERY vocal cat. The boarding facility is up one floor from where the check in desk is, but when Patches goes into her carrying case, you can hear her screaming a mile away. Patches is very happy to home today, and enjoyed time out on our deck, soaking up the sun.

I spent some time with Ann and her children today. Abigail's friend, Jackson is visiting from Pennsylvania. Mattie actually met Jackson in July of 2009, and they got along very well together, since they have similar personalities. Both of them are creative and love to build with Legos. When Jackson saw me today, I thought it was very sweet of him to tell me that he misses Mattie, and he enjoyed playing by the pool with him last July. That comment stayed with me all day. Jackson and Ann's son, Michael, went with us to visit Mary (Ann's mom). There are two other residents who live on Mary's floor at the assisted living facility, and though these individuals are most likely cognitively intact, they are unable to speak. I can only imagine the frustration these individuals feel, because they are trapped inside their bodies, unable to communicate. Today, I had the wonderful opportunity to see the power of children in the lives of older adults. Michael and Jackson used playdoh to construct different objects, and the older residents were intrigued by their creations. They got to hold what the boys created and you could see their faces light up because they had this young stimulation. Michael and Jackson then set up plastic bowling bins and balls with the two older residents. Neither resident could speak, but you could see in a way that their was an awakening. Their spirits were coming alive, as they were asked to participate in the fun. It was a sight I won't forget anytime soon, and it further proves the beauty of inter-generational interactions. Needless to say, in all the time I have visited Mary, I have never seen these two individuals more animated than today.

Later on in the day, I was with Ann as we picked her daughter up from gymnastics. Ann and I observed this mom come into the building with three children in tow. One child went into the gym for her class and her other two boys, who couldn't have been more than 2 and 4 years of age, were standing by her side in the lobby. This mom became engrossed in a conversation with her friend, and literally turned her back to her boys. As 2 and 4 year old boys will do, they wandered around, and then wanted to leave. But their mom did not take notice. For some reason, these little boys saw a woman with blond hair, who they thought was their mom, heading out of the building. So they began to run to catch up with her. Ann was watching this whole scene, and began running after the boys. Ann was on the boys, and I was simply glued to the mother, who was absolutely oblivious to the fact that her sons left the building and were heading into a parking lot following a woman who wasn't even their mother. Ann got a hold of them right before they hit the parking lot and when she brought them back inside to find their real mom, their mom did not take notice. She did not even look up. She continued talking and basically did not even realize what transpired while she wasn't paying attention. This whole scenario today troubled me. It bothered me on many levels. First, I did not care for the subtle message this mom was sending her children, which was her conversation was more important than their whereabouts and safety. Second, I did not see any other parent concerned about these children wandering outside the building. If it weren't for Ann, what would have happened to these children today? Third, what I regret is I did not go up to this mom and explain to her what I observed. Maybe because I was just too stunned by her total disregard! She has three healthy children, and yet doesn't seem to appreciate that and the responsibility that comes with parenthood. She left me disillusioned and upset.

While writing tonight's blog, our friend, Carolyn (the chair of the raffle committee for this year's walk) was e-mailing me back and forth. Since she knows Ann and I to be like Lucy and Ethel (from I love Lucy), she was trying to provide me with a TV analogy for herself and her close friend. She came up with Laverne and Shirley. Well this got us on a whole 1970's TV discussion. As Carolyn is so good at, she got me laughing tonight!

I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Another Tuesday has arrived and with it, my thoughts of you. I hope you had a nice beach retreat. We've lost power and probably won't have it back until Thursday or Friday. I'm wishing I was at my own beach retreat right now!! There are so many meanings one can find in the movement of water... At times, grief is like a wave which ebbs and flows into shore. Sometimes, the water is rocky and stings as it hits you. At other times, it envelopes you slowly and carries you away before you realize it. My hope, is someday the water will bring you a sense of peace as well. Thinking of you, this Tuesday and everyday."

The second message is from my friend, Charlie. Charlie wrote, "I am glad you had a break from DC and although it was hot at the beach as well, I am sure it was a more pleasant environment overall. Thank you for posting that picture of the cake as I kept trying to picture what it looked like and I can see I was definitely off the mark. I think it is very playful as well as thoughtful. It's great that you had the opportunity to visit with so many friends over the course of the weekend in a more relaxed place. I really liked Nancy's poem and as she said "a parent is one forever" and I hope you can find an outlet for the skills and love you bestowed on Mattie. I hold you gently in my thoughts."