Saturday, August 7, 2010

Saturday, August 7, 2010

Tonight's picture was taken in August of 2009. This was one of Mattie's last visits at home. He was playing outside with his motorboat, in the kiddie pool sitting on our deck. His buddies Louise and Meredith gave him this captain's hat. Mattie enjoyed thinking he was the captain for the day, something he always wanted to do before he battled cancer. Mattie was fascinated by boats and water, yet once he started on chemotherapy and had a central line coming out of his chest, the idea of being on a boat and in water frightened him. So we improvised. I share with you tonight my..... Captain Mattie!

Poem of the day: Looking back by Charlie Brown

I sit surrounded by your special things
But they don't bring the comfort your presence brings
I want to have you by my side
Sometimes I dream you did not die
Many say I should move on but,
Where can I go with you gone?
A year ago they said you would die
Impossible to believe, I hoped they lied.
But it was true and now you are gone
And I have to find the strength to live on
I hope somewhere you are waiting for me
And you can explain why this had to be.

I continue to feel quite sick with a fever, cough, and other aches and pains. Some of you may recall that I battled through a summer flu in July for about two weeks, and I thought that covered me for the summer. Apparently I was wrong. Both illnesses, have left me quite debilitated and unable to move out of bed. Which for me is challenging and very unnatural. I know several of you have let me know that physical illness after a tragic loss can surface right about now, as I approach the one year anniversary of Mattie's death. I do not doubt this, nor do I doubt the sheer fact that my body is most likely immunocompromised after almost two years of very intense stress. As I move further and further away from this stress, I think my body actually doesn't know what to do with itself, and all the built up stress I have been carrying is now being expressed in this manner.

I haven't moved from bed today, and Peter has been trying his best to help me. But it is hard to know what to do, considering I am taking a host of things to try to get better. Based on how my day has been, I do not have much to report, but I do appreciate those of you who emailed me today and either told me a funny story, or have reflected on a thought with me. Your time and thoughts mean a lot to me. I am particularly fascinated by the many stories of butterfly sightings and how seeing these glorious creatures make you feel!Thank you for thinking of my Mattie in those special moments.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am sorry you are ill again. I think you are so used to continuing on through your illness that you have gotten into the habit of ignoring all but the most severe of symptoms. I remember how you ill you were while Mattie was in treatment, yet because he needed you, you kept going rather than staying in bed. While that was a good policy (probably the only possible solution) at the time, you have to relearn awareness of your physical self and how to respond to your body's needs for rest and care. This takes time and effort and is hard to do when your mind and heart are overwhelming the process with sadness and grief. I think you are going to have to make a daily conscious effort to make this connection to help reconnect yourself to your physical self. Perhaps doing this while lying in bed in the morning, before you get up would be a way for you to begin. Consciously breathe and relax and then scan yourself taking note of anything that doesn't feel right. I often begin my routine in bed with a breathing and stretching routine before I even try to rise. I find that lets me know what I might need to attend to/work on as I go through the day. Perhaps you can set up some routine that will work for you. Thank you for finding those pictures of Mattie and Abigail; you are right, he looked so animated and energized that it is hard to believe that he was not going to win the battle. As I go through the day today, I will say some special prayers for your recovery and for your strength. I hold you and Peter gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "What a powerful picture, like so many others! You have given so much through your blog. It encourages others to share and understand how to be supportive during difficult times. Obviously, others feel it too as the numbers continue to climb with readers and responders to what you share. I am glad that Mom and Dad are visiting with Peter and you.Their visit will be good for all of you. I am sorry that you are continuing to feel physically ill. As Charlie has stated over and over again, the body becomes so vulnerable when the spirit is aching. I conclude with some thoughts and pray that I continue to find a way to support you on your journey."


THE DAY AFTER by Nancy Heller Moskowitz
How can it be?
That you are no longer here.
That it was just one year,
Ago.
You were soon to leave us.
We did our best, others too.
For you, our Mighty Mattie Moon!
On this day, the day after,
We still find so little laughter.
To replace our breaking hearts.
We're told you rest in peace.
And, yet, peace eludes us.
Death lingers long with those left behind,
Will we ever feel freer in our mind?
I fear not!

Friday, August 6, 2010

Friday, August 6, 2010

Tonight's picture was taken in August of 2009, right after we found out Mattie's case was terminal. Linda, Mattie's childlife specialist, arranged for a special event at the Lego Store. Mattie and his buddy, Abigail, got to create something in the store after hours. There were NO other customers in the store, and they had the opportunity to work with two Lego masters. It was a night to remember. I still remember Abigail calling us on her ride home with her mom, to let us know that was the best night of her life and that she had a lot of fun! Mattie was given the choice of picking out any Lego set in the store that night to build, however, since he practically had each set, he instead decided to build his own creation! The creation was a NYC yellow taxi cab! This taxi sits in our living room, and one of these days I will get a case to put it in and protect it. It was one of the last Lego creations Mattie had the energy to assemble. What I love about this picture, was that Mattie was energized and motivated to self propel himself in his wheelchair around the store, so that he could collect all the Lego bricks he deemed necessary.

As you can see from this picture, the taxi turned out very well. Mattie was thrilled and beaming, as he stood next to Abigail. Looking at this picture it is hard to understand that Mattie was terminal. To me, he looked so much better than he had on chemotherapy, which is why I most likely couldn't accept that he was dying until two or three days before he actually did. Also as you can see from this picture, the Lego store is bright yellow. A yellow I tried to describe in last night's blog. It is almost like walking into the sunshine when you enter the store.


Poem of the day: The Mall by Charlie Brown


Yesterday as I walked past the store
I so wanted to see you at the door,
And how you loved to go inside
To buy and build your toys with pride.
But as we walked through the mall
I didn't see you there at all.
Not in those places you used to be
And how that really saddens me.
Now I watch other children run
And I see them having fun.
I hope wherever you are today
You have the chance to run and play.

On August 6, 2008, we learned that Mattie's cancer had metastatized to other bones in his body. So we weren't only fighting ONE very large bone tumor in his right arm, but in fact FOUR tumors. Between yesterday and today, we have been hit with several anniversarys, days which I would like to say weren't a part of our life or world. As I reflect on August, I am not in love with it anymore than I am with July. As we approach, August 8, which will mark 11 months sinces Mattie's death, I sometimes wonder how we have managed to make it through this year. In many ways the days and months have flown by, and in many ways, emotionally the feelings of battling cancer and helping Mattie die are still so raw.

I woke up this morning feeling even worse than I did yesterday. Ann called me this morning, and when she heard how I sounded, she did not like what she heard. In fact, I am in such a low place, I wasn't really paying attention to some of my physical symptoms. So she encouraged me to go see the doctor today before taking my parents to the airport. So I literally put myself together and within 15 minutes got in the car to see the doctor. When I got to the office, they took my temperature, and I indeed had a fever. Again, something else that I was clueless about, because I wasn't listening to how I was truly feeling. By the time the nurse practitioner heard all of my concerns, her response to me was "you are a mess." I couldn't agree more.

Driving my parents to the airport was uneventful, we hit no traffic and had a good conversation. The irony is right before we hit the airport, I told my mom that I wanted her to look for two things for me while she was in Russia. One was a nesting doll and another was a handmade embroidered shirt. Why on earth did these things come into my head? I have no idea, but it was as if I reverted back to being a little girl again, and was asking for some special prizes. My mom took it all in, and after firing off these two requests, she asked me what else I wanted. It was just a funny conversation of sorts.

As I was driving home from the airport, I was on the George Washington Parkway, and I could see someone walking along the side of the road. This person caught my eye. So I turned to look at him. He appeared to be homeless, and was carrying a huge cross (almost resembling the type of cross Jesus carried and was nailed to) under his arm. It was an image today that has remained with me. For some reason it was very symbolic to me. Symbolic because we all carry our own crosses in some way, his was literal, some of ours may be figurative. None the less, he reminded me that we do not live in a perfect world. We live in a world filled with pain, heartache, tragedies, and disappointments. The only salvation as I see it however, is how we treat each other and how we help each other during these tremendously hard times. Truly loving someone is not only helping them and being there for them in the good times, because those times are easy, but it is times of crisis that speak volumes. It is my hope that this man carrying the cross today has people in his life who support him, like Peter and I do.

For the remainder of the day, I spent in bed. But I wasn't alone. As you can see from the picture I took, Nurse Patches was right by my side. She seems to know when I need help and support. Clearly in the past, I could manage being sick, or as most moms know, you work through being sick, because you have to. However, after Mattie's illness, I do not handle being sick as well. In fact, my mind always goes to the worst possible scenario, and I think I am profoundly sick. I guess because I have seen profound illness for two years. Somehow having someone sitting next to me in these challenging moments, is very helpful. In the midst of sitting in bed, I was exchanging e-mails back and forth with my lifetime friend, Karen. Karen was telling me an hysterical dream which entailed flying to Los Angeles with me and then when we got there my parents seemed to have giant rabbits living in their house. I am not doing the story justice, but it got me laughing and we had fun analyzing it!

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As soon as I read about the Lego store in the blog, I had a flash to when you wrote about how they opened the store after hours so that Mattie could go and pick out and build his own model. I remember you writing about how he went through the store trying to find just the right kit and finally settling on making his own and building a taxicab based on a model he saw displayed in the store. He really had a wonderful eye for building and creating. I am sure it was difficult to walk those places you went in an attempt to find things to keep him occupied through his treatment and my heart aches for you. We are here on the outskirts of the Smokey Mountains and we're doing some hiking as well as sightseeing in the local area. Yesterday my husband was sharing that we really hadn't seen any wildlife in spite of all the signs to watch out for bears and all the guidebook notes on the foxes, deer, racoons, etc that live in the woods. We'd just come back from dinner to our hotel and there climbing on the trash bins was a big black bear. He was unable to open the bin, so he took off across the lawn, climbed the fence and lumbered back into the woods. It was just a couple of minutes but we both just stood and stared. All I could think was I wished Mattie could have seen this and what he would have incorporated into one of his art projects as a result. Today as we head to Cade's Cove in the mountains, I will be carrying you along with me. I hold you gently in my thoughts."

Thursday, August 5, 2010

Thursday, August 5, 2010 -- A year ago today our world changed forever!

Tonight's picture was taken on August 5, 2009. A day Peter and I will never forget. In fact this picture speaks a thousand words! On that day we learned that Mattie's cancer spread with a vengeance, through his lungs, liver, and stomach. Thereby making Mattie's condition terminal. In this picture, Peter and I had just come back from talking with Dr. Shad about this news. We were stunned, and when we walked into clinic, Mattie was anxiously awaiting our return. Fortunately Jenny and Jessie (his art therapists), and Kathleen (one of Mattie's incredible HEM/ONC nurses) helped to entertain him while we were in a doctor's meeting. As you can see, each face in this picture was telling a different story. I looked shell shocked, Peter was desperately trying to engage Mattie, and Mattie was clearly staring at us to determine what on earth was going on! Kathleen (the nurse in the lower left hand corner) was intact, as all our nurses were until the end. However, on the day that Mattie died, everyone was in tears, and it only confirmed that our Georgetown professionals became a part of our family during this treatment ordeal.

Poem of the day: Living with Grief by Charlie Brown

I knew grief would hurt
And it would cause me pain,
But I did not realize
It was such a drain.
I have no energy
And very little joy,
All of that seemed
To depart with our boy.
Getting out of bed
Can be such a task,
Sometimes it seems
Just too much to ask.
Like pretending all's well
When I am so sad inside,
I wear a happy mask
It's the way that I hide.
So when I'm with friends
I'd like to be,
Just who I am
Can you still accept me?

Charlie's poem, living with grief, seems quite appropriate tonight. It is appropriate for two reasons. The first is that today marks the one year anniversary that we found out Mattie's cancer was terminal. This is another day, I shall never forget or the feelings this day produced and continues to produce. Second, on days or weeks like this one, when I try to understand why I am feeling SO physically awful, I stop and reflect at all Peter and I lived through. Upon reflection, it is almost incredible that we survived to tell Mattie's story, and just when I wonder what is wrong with me, I remind myself, I AM..... LIVING WITH GRIEF!

The beauty of the blog, is that we have been recording each day of our lives for the last two years! That alone is a feat, but what is more amazing to me, is that our supporters continue to check in with us, read each day, and want to help and try to understand our situation. Today, I went back to what I wrote on August 5, 2009. The first paragraph of the blog that night read, "Tonight, I write with a heavy heart to let you know that Mattie's fight is coming to an end. We learned today, after I insisted on an ultrasound and an abdominal CT scan, that Mattie's cancer has spread back to his lungs, as well as his liver and stomach. It is everywhere! This is a fast moving disease in Mattie, because you will remember he had a sternotomy in June, and every known osteo lung tumor was removed at that point. Almost two months later, there are tumors everywhere."

Reading the above paragraph makes me pause, and I ask myself how can life ever be the same for Peter and I? The simple answer is.... IT CAN'T!

I went to the mall with my parents today, despite feeling ill. As we walked through some parts of the mall, my mom and I both became quiet and upset. These were spots that reminded us of Mattie. There are three places in particular that get us: 1) is the children's section of Nordstrom's, 2) Gymboree, and 3) the Lego store. In fact, as we walked passed the Lego store today, all I could see was smiling children and children running around inside. Unfortunately this is not how I recall the Lego store. For me, when I look into the Lego store, I see Mattie in a wheelchair, and the need to find something, anything that was new and stimulating for his head and hands. In fact, the yellow glow of the store's paint is etched into my mind, in a similar way like how the sun's rays affects one's eyes.

While at lunch with my parents today, I couldn't help but watch two moms attempting to have lunch together. Each mom had three children in tow, so with a total of six children, this lunch meeting became a major balancing act. The boys were running in circles around their table, and the girls were sitting quietly and playing with each other. I couldn't help but laugh, because this was definitely my experience with raising Mattie. He was a boy in perpetual motion. Part of me felt for these moms who were desperately trying to have a conversation, and yet on the other hand, I was worried for these children who were running wild in a very public area, right by the entrance door to the mall. Mind you I am talking about very young children too! Though I was eating lunch, I had my eye out for these children. Naturally they aren't my responsibility, and yet, maybe because the moms seemed so distracted, I found myself reacting to their behavior. I even had my parents watching this scene through the restaurant's window. The fun part was when we then tried to determine which children belonged to which mom. To me this was a simple exercise. One of the mom's was literally dressed in the color orange from head to toe, and guess what color her children were wearing? Clearly this was the orange family! Matching up the children to their mom's correctly brought a great chuckle to me today. You can chalk up my silliness to not feeling well.

Tonight we all went out to dinner together, and went to Mattie's favorite restaurant. He loved this restaurant because of the pond and the fish by the entrance. We talked about my parent's trip, which they are embarking on tomorrow, and naturally a whole bunch of other things. When we got home tonight, Peter alerted me that our Washington Post article was also in the Boston Globe today. I attached the link below.

Son’s death to cancer powers parents to help other families By Rick Rojas

Washington Post / August 5, 2010
 
http://www.boston.com/news/health/articles/2010/08/05/sons_death_to_cancer_powers_parents_to_help_other_families/


I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am sorry that yesterday started out such a tough day but I am glad your parents arrived and helped you cope with the rest of the day. Sometimes getting started seems to be the toughest part; once you are doing something, you can almost put yourself on automatic and keep going. I am sure you have a lot of catching up to do; even if you were still making calls back and forth, being with someone in person is always special. I know your parents miss seeing you so much and it's great that things worked out so that they could be with you for a few days. As Nancy said, it was great to "hear" Peter's voice on the blog and I hope he found it helpful to do; I know the audience was both receptive and sympathetic. As always I hold you both gently in my thoughts."

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.

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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.
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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."