Saturday, October 13, 2012

Saturday, October 13, 2012

Tonight's photo was taken in October of 2008. Mattie was in the Child Life Playroom at the Hospital with his buddy, Linda (Child Life Specialist). Linda understood right away that Mattie was the kind of kid who needed a task and responsibility. What you are seeing before you was a shipment of gifts that the Hospital received and Linda invited Mattie into the playroom to help her go through the items and organize them. In a way this was a special responsibility, since you can see other kids weren't in the room with them! Weekends were also very challenging for us in the Hospital. You may be asking yourself why. If you have ever stayed in a hospital, then you understand what I am saying immediately. Weekends can feel like a ghost town, because the usual staff aren't working. For example, there wasn't a child life specialist or art therapist working in the Hospital on weekends! Motivating Mattie to leave his hospital room on Saturdays and Sundays was close to impossible. However, Linda gave Mattie the task of feeding the fish in the hallway of the pediatric units over the weekend. This inspired Mattie to move, it was his job, and he wanted to do it well. I think this speaks volumes about human nature. At every stage of our lives (regardless of our physical condition), we want to feel needed and contributing to something bigger.


Quote of the day: I believe that one defines oneself by reinvention. To not be like your parents. To not be like your friends. To be yourself. To cut yourself out of stone. ~ Henry Rollins


Reinventing one's self is exactly what I have been asked to do after Mattie's death. This is NOT a process I asked for, and frankly to me the reinvention occurred much earlier in my life than I had expected. I think as we age, there is a natural need for self-discovery, self-reflection, and reinvention. Typical developmental milestones such as being an empty nester or retiring may cause one to re-evaluate personal and professional aspects and priorities. I knew this was a part of life and eventually I would have to face this, just like so many others before me. But what happens when things do not go according to plan? What happens when things occur out of order (a child dying before a parent)?

When Mattie was diagnosed with cancer, I gave up my job. My new job at that point became my life's greatest challenge and test..... I had to learn, work, and fight within a medical care institution for my son's life. After Mattie died, working at a university with undergraduate and graduate students seemed inappropriate and no longer my passion. Almost like a forced retirement. A retirement from something I trained a good portion of my life to do! In addition, when Mattie died my identity as a parent also died. So I lost two titles on September 8, 2009.... professor and mom. So now what? I am trying to figure out who is Vicki and what her future holds. Grief can make you feel like you are frozen in stone, and it is very hard to chip away at the pieces to reveal what is hidden within.

Last night, the Washington Nationals lost to the St. Louis Cardinals in the division playoffs. For those of you who know me well, you are most likely saying.... Vicki has NOW lost her mind and is talking baseball! Vicki doesn't like sports, so what's up!? Keep reading. For those of you who like major league baseball, my intention is not to insult you, but I feel a MAJOR reality check is in order. I get the excitement, the Nationals went from being an underdog and a losing team, to this year a beauty in motion. Definitely a feat for a town who has gone without having a baseball team for decades. Yet, I am concerned with the laments, crying, and heartache over this loss in the playoffs. I get people love sports, but sports is NOT something to cry over. People are what we should be identifying with and crying over. Loss of life is a heartache, the Nats losing is not equivalent. If you doubt what I am saying, walk into a nursing home, a rehabilitation center, or pediatric cancer unit of a hospital. The reality of the pain that people are facing will hit you like a brick wall. I also take great issue with the salaries given to these baseball players, and if that wasn't bad enough, some of their behaviors and attitudes are most definitely questionable as role models for our youth.

Let me put this further into context for you. Tonight I went to visit my friend Mary in her assisted living facility. As I entered Mary's room, I heard a familiar voice. The voice belonged to one of Mary's former nursing aides, Edy. Edy no longer works at this facility but she periodically comes back to visit her patients. I saw Edy in December, and now today. Edy is a special lady, she loved working with older adults and treated each and every one of them with respect. She had a way of making you feel special and cared for. When Edy left the facility, I was terribly disappointed for Mary. While talking with Edy today, she told me how her family's life has been changed completely as of Labor Day. On Labor Day her 25 year old nephew was visiting friends. He was a healthy young man, going to school, and working to support himself. While visiting his friends, they all went swimming in a pool. He dove into the pool not realizing the depths of the water, and therefore hit his head in the pool, breaking his neck and leaving him paralyzed from the neck down. This beautiful 25 year old with great potential is now living in an assisted living facility trying to get rehabilitated, but his chances for any sort of physical recovery are grim. This family's life was changed in an instant and I could feel the pain, devastation, and sorrow for this loss. These kinds of stories which I hear often, and have experienced for myself within the loss of Mattie cloud my vision and viewpoint. To me, Edy's nephew, my Mattie, and all people fighting for their lives are heartaches and travesties.

But this is the problem with losing a child to cancer. I no longer fit in. I would like to be able to say I understand the devastation of the Nats losing, the Yankees winning (remember I live with a Red Sox cult member), and the list goes on. Sadly I don't, and this makes me feel further removed from society. I can't share in the typical highs and lows that others do, and one of the painful realities of a significant and traumatic loss is being disengaged from others. So in a way, I am not only on a quest to cope with grief but I am on a journey of finding a way to live within a world I one longer identity with and relate to at times.

 

Friday, October 12, 2012

Friday, October 12, 2012

Tonight's picture was taken in October of 2008. Mattie was in the Child Life Playroom at the Hospital, and the scene you see in front of Mattie was created by him and his big buddy Brandon. Mattie used a piece of paper, painted in water blue, built a bridge out of popsicle sticks and model magic, and then lined toy cars up to go over the bridge. He and Brandon designed water creatures for the ocean. You can see the brown skate near Mattie's left hand. I also recall Mattie designed a wonderful shark made out of model magic as well as a creature which I called, the googly eyed blob. This googly eyed fellow is still with us today and can be found in Mattie's room.


Quote of the day: Be faithful to that which exists within yourself. ~ Andre Gide


Every second Friday of the month, I have my licensure board meetings. Today's meeting seemed like a marathon! The meeting went on for about six hours, which isn't surprising when you consider we deal with licensure applications to become a professional counselor in DC, we host a public forum, we are in the process of creating regulations for a new license we are developing, and then we have to process a host of ethical violations. Any one of these tasks is enough, but in total it can get overwhelming. We work straight and by the end of the meeting my head was spinning and pounding at the same time.

I learned while I was away in Cape Cod that our licensure board's executive director is retiring at the end of this month. This woman and I have worked together for about 10 years, and in many ways I feel like we have grown together. As I told her today, her retiring is a loss to us professionally, but it is also a big loss for me personally. This is a person I respect and have enjoyed working with, and I honestly feel that we have accomplished great things in the last decade for the profession. We are able to do this in part because we work so well together, and this type of teamwork is not replaceable.

Mattie's death has changed me. Things I once did professionally NO longer interest me. But the licensure board is different. It is different because of the camaraderie I have felt with the executive director. She was very supportive of me while Mattie was battling cancer, and I know it would have been much easier for the board to remove me from my chair position, but they did not. Mind you I did not attend a solitary board meeting during Mattie's battle, nor did I the year following Mattie's death. Somehow that did not matter, when I was ready to come back, I was welcomed and treated with great respect.

In fact, the executive director and I spoke about my leadership style today after the meeting. The licensure board is one of several non-profits I have had the opportunity to lead in my career history. For this particular board I am given a gavel to run the meetings, I have to speak into a microphone to be recorded, and the list goes on. Yet my board knows I NEVER use the gavel, and I for the most part do not believe in a hierarchy. I value each person's perspective and insight and try to give each person a certain level of autonomy. As tonight's quote points out..... I always try to be "faithful to that which exists within" myself. Yet with that said my board knows, when I have to, I can quickly take the reins and there are many examples during my decade of service that show I can be a force that you don't want to reckon with.

This evening, I met up with Ann's aunt and together we went to visit Mary (Ann's mom) in her assisted living facility. Mary was alert but mute. This is a state I have gotten used to, but one that I don't like. It is hard to see someone you care about drifting away, or in Mary's case trapped within her own body. I certainly miss my friend talking but thankfully I feel that the intense times I spent with Mary while her husband was dying has enable me to now understand a great deal of her feelings just by watching her eyes. They say the eyes are the window to one's soul, this is most certainly true in Mary's eyes.

I would like to end with a beautiful story that was shared with me by my friends Karen and Charlie. It is entitled, Marine helps a young boy finish a triathlon
http://ireport.cnn.com/docs/DOC-854041?hpt=hp_c3. Ben is an 11 year old osteosarcoma survivor and during a triathlon his prosthetic leg came loose and he was unable to run and finish the race. Despite this mechanical issue, Ben did finish the race with the assistance of a marine, PFC Matthew Morgan. This marine saw Ben struggling as he was running and clearly Matthew embodies the philosophy of "leaving no one behind," even when he isn't on the battle field or on duty. This principle instead guides his life and illustrates what wonderful results and outcomes can get accomplished when we work together and help our fellow human beings.
 

Thursday, October 11, 2012

Thursday, October 11, 2012

Tonight's picture captures the creativity of Mattie! As my faithful readers know, Mattie LOVED card board boxes! He could transform them into whatever his imagination desired. Mattie's support team at the Hospital understood his need for boxes and nurtured this creativity. One day in clinic, Mattie was given the plain brown box you can see on the left hand side of this photo. Over time, not just in ONE day, Mattie transformed this box into a haunted house. He drew on it, cut out pieces, and with the help of Jenny and Jessie (his amazing art therapists), he designed witches and ghosts and attached them to the house. This haunted house turned out to be a beautiful and colorful structure, but it also was scary. One of the surprises to the box were the bats that Mattie had hanging on the inside. If you opened up the doors of the house, you were greeted by rubberized bats jumping up and down at you. Mattie created MANY boxed structures while at the Hospital, and we photographed each and every one of them.


Quote of the day: Nothing is impossible, the word itself says 'I'm possible!' ~  Audrey Hepburn


I am an Audrey Hepburn fan, and have always considered her a classy lady on and off the screen. A true humanitarian who died too young at the age of 63, from my nemesis, cancer. I came across Hepburn's quote today, and though it is cutesy and plays on the word impossible, there is great meaning within this simple notion.

In any given day, chances are we are faced with daunting or challenging tasks, we may have interactions with others who we deem are insensitive and out of touch, we maybe the recipient of constant demands on our time from others, and the sheer volume of information we are asked to process each day can be beyond overwhelming (computer, TV, i-phones, blackberries, i-pads, telephone, and the list goes on!). When taking all of this into account, we may feel that our day is simply IMPOSSIBLE. Of course depending upon our mood and how things are going in our own lives, sometimes these stressful and impossible days are indeed possible and we somehow manage. Yet on down days, days when we question what we are doing, how we are doing it, or whether things are going right with our family and friends, the IMPOSSIBLE can get the better of us. Which is where Audrey Hepburn's quote comes in, because she was pointing out the importance of focusing on our inner strength, courage, and commitment to make things possible.

Certainly when I look at Mattie's cancer battle and death, Peter and I gave 110%, and yet I learned that even giving something your best may not matter, because in the end there are things that are just too IMPOSSIBLE to fix. So in essence the statement that NOTHING IS IMPOSSIBLE is just not true! What cancer has taught me is that there are many things out of my control, which is not a comforting revelation. Yet despite this even within the impossible we found a way to make certain things possible. I have three examples for you: 1) Once Mattie was diagnosed with cancer he was unable to go to school, something a typical 6 year old would have been doing. Yet we were fortunate enough to have some of his teachers who devoted their free time to visit him, thereby making the impossible possible. 2) When Mattie wanted a pet fish, despite this being against hospital policy, we found a way to make this impossible request possible. and 3) Mattie's cancer left him socially isolated and he internalized a great deal of his depression and anxiety, and though managing and helping him cope with both his physical and mental health issues were harrowing we had friends who reached out to us and made sure we weren't alone. They made an impossible situation seem more possible. The point is even within the impossible there are aspects of possible, and sometimes it is the small possibles that must be celebrated and appreciated!

Wednesday, October 10, 2012

Wednesday, October 10, 2012

Tonight's picture was taken in October of 2008. What I immediately notice in this picture was the bag of potato chips on the bed. Mattie went through various food phases at the hospital. There was the vanilla frosted donut phase, the mac and cheese phase, the potato chip phase, the vanilla shake phase, and of course the cupcake phase. Also notice the keyboard in this photo. This keyboard was given to Mattie by the "Piano Man." The Piano Man was a volunteer in the hospital, and his real name is Jerry. Each week Jerry and Nancy would visit the pediatric units and actually come into each patient room and try to entertain the kids and their families. I remember Jerry and Nancy were the first hospital volunteers we met during Mattie's very first week at the hospital. Back then, I was shell shocked over living in a hospital, absorbing the fact that Mattie had cancer, and trying to wrap my head around chemotherapy and its side effects. This is the emotional context behind how we met Jerry and Nancy. In fact, I still recall the song Jerry and I sang together that first night in Mattie's PICU room. The song was entitled, Swinging on a star, made famous in the Bing Crosby movie, Going my way (http://www.youtube.com/watch?v=iTUKHMlbYGA)! Mattie was intrigued by the song, by our banter, and of course with music. Their visit to our room, allowed us about 30 minutes of respite and took our minds off of our horrific reality. Jerry and Nancy instantly took a liking to Mattie, and they developed a game with Mattie called "name that tune" which he absolutely LOVED. What Mattie did not know was that Jerry and I would email each other days before the game to develop an approved list of songs. Songs that I knew Mattie could easily identify! Needless to say, Mattie ALWAYS won "name that tune." Funny how seeing a picture of this keyboard can transport me right back to the first week of chemotherapy.

Quote of the day: Love leads us into mystery where no one can say what comes next, or how, or why. ~ Caryn Mirriam-Goldbert


Love is indeed a mystery. It is hard to say what attracts us to certain people. I am not only talking about the selection of a significant other, but also in the choices we make within our friendships. Love is multi-faceted and there are so many forms of love. Sometimes we can give our hearts to the wrong people and this certainly is a painful lesson that embitters us to the notion of love, or allowing one's self to love in the same way again.

Loving one's child is less of a mystery in a way. It seems to be a biological given (certainly I am aware of the fact that there are circumstances when children are born in which a parent is incapable of love, clearly I am not talking about these instances), as if an involuntary switch is turned on within you to care, protect, and love this little being. However, as the quote implies, with any kind of love, one never knows what will come "next, how, or why!" Certainly in Mattie's case, I would never in a million years guess a child who was born healthy would develop cancer six years later, and within 14 months die. In a sense this makes love an even bigger mystery to me. Why are some parents allowed a lifetime of love to explore this mystery, and we were only allotted 7 years? I realize there is NO answer, or at least one I want to hear, that could justify being given a finite amount of love.

Though Mattie isn't physically with us, his love still exists. For me it now exists in more indirect ways through a blog, a Foundation, a Foundation newsletter, and in our events. I realize all these things are of value and I appreciate the feedback I get from my readers, but I have to admit it is very difficult not experiencing the two way love I had grown accustomed to for seven years of Mattie's life. This lack of love does leave a huge chasm in one's heart and life, which is hard to fill at times.

It is funny, I sat down yesterday while writing the blog and realized we were in the month of October. Months are a big blur to me now! When Mattie was in my life, I had a solid feeling for time and seasons. Now these markers aren't as important. In fact the other day, I passed a place selling all sorts of pumpkins. Actually you can't help but also see pumpkins being sold in the grocery store! Yet even the sight of these colorful orange orbs didn't register with me. Perhaps my mind doesn't want to register the fact that yet another Halloween is approaching!

A friend told me the other day that she is hoping at some point all of this will get easier for Peter and I. I too would like that to happen, but I don't sense that is possible. The challenge is finding a way to balance these feelings of loss and at the same time not disengage from living and others. A rather tall order indeed.

 

Tuesday, October 9, 2012

Tuesday, October 9, 2012 -- Mattie died 161 weeks ago today.


Tonight's picture was taken in October of 2008. This was before Mattie had any of his surgeries and therefore was able to walk independently. We took Mattie to Baltimore's Inner Harbor that weekend to walk around and have lunch outside. As you can see in Mattie's right hand, he created something while we were at lunch! A LEGO creation! LEGOs were always a part of our lives, Mattie just naturally gravitated to them, and thankfully he did because in the Hospital and battling cancer, creating with LEGOs was very therapeutic for all of us. 


Quote of the day: The part can never be well unless the whole is well. ~ Plato


Plato's quote really intrigues me. It seems to me that this quote can be applied to just about anything.... whether we are talking about a family, a business, a classroom, or even an individual. In many ways, grief is quite a threat on the "whole," and I have seen when all of me isn't doing well, then my "parts" aren't doing particularly well either. Grief is a funny thing though, you can't see it, hear it, taste it, or feel it. But you can certainly sense it. There are times grief can make me absolutely myopic, not on purpose, but I find it is one of my many ways of coping. Things around me become blurry and out of focus, so that I can instead invest the energy within to manage the internal chaos.

The sad part however, is when things do come into focus for me, I am acutely aware of the pain of others around me. We live in a complicated world, a world I sometimes don't understand.... in which children are battered and abused, people are going hungry, families are dysfunctional and unable to provide the proper guidance and insights to their children, in which people feel the need to turn to substances rather than one another, and the list is frankly too long to cover in this posting. It is hard not to become disillusioned when hearing and seeing all of this. So what is the answer? How does one combat all these forces of negativity that can easily consume us? I am not sure I have the answer to this, especially on a cold and grey day! The only immediate thing that comes to mind is meaningful connections. At the end of the day, that is what can get you through even the toughest of days, the key though is learning how to find these meaningful, trustworthy, and solid relationships. To me, these are skills that are just as important to teach a child as math, science, English, or history. These are life skills and what continues to shock me some days is that parents do not want to be parents. I get it, the job is hard, it is all consuming, a complete energy drain, and leaves you floundering to figure out who you are at times. Yet children/teens need our adult EXPECTATIONS! If we give up as parents and just assume that children will experiment with sex and drugs, because that is our society's norm, then guess what.... your children will live up to these expectations. Children/teens need guidelines, limitations, and most of all help establishing their own moral compass. Typically I do not talk about these things on the blog, but I had the opportunity to chat with several moms today, and I can sense the struggle. The struggle is not necessarily finding a moral compass, the struggle is how to help craft this compass in a world in which children and teens are practically rewarded for growing up and experimenting with things before they are ready to do so.

As today marks the 161st week of Mattie's passing, I sit back and realize Mattie would be 10 years old now, a tween (as our current society calls them, between a child and a teenager), and I honestly do not know what kind of challenges we would have had with him as he developed. I was not given that opportunity to find out, and in a way, that is definitely part of the loss and grief we contend with each day. We grieve Mattie's existence and all the stages, mile markers, and seasons that typically come with having a child.  
 

Monday, October 8, 2012

Monday, October 8, 2012

Tonight's picture was taken in October of 2008. Mattie was in the Hospital hallway awaiting a chemistry club demonstration. Mattie loved this Club and the Club's president! The Club always did fun, educational, and most of all hands on activities which intrigued Mattie. As you can see Mattie was in a wheelchair recovering from his first limb salvaging surgery. Along side him was Brandon, his big buddy, and the dynamic duo (Lesley and Whitney; child life interns). Thankfully Brandon is doing well and has no evidence of disease! This was a wonderful foursome at the Hospital, and I will never forget how wonderful these three individuals were with Mattie.


Quote of the day: Even a small star shines in the darkness. ~ Finnish Proverb


Today felt like a whirlwind! It was one chore after another, after another. However, at the end of today, I can say I was very productive. This morning, I had the opportunity to bump into Maria. Maria is our friend, who happens to work in our complex. Maria babysits our plants when we go away, and she is the main reason why our plants haven't died throughout this summer! Maria is an avid blog reader and she brought a smile to my face today when she told me how helpful the blog is to her. She feels my writings have enabled her to more freely talk to others who are grieving. The greatest misconception about grief is that talking about it only makes us feel sadder. However, what I have found is universally we need to be heard, listened to, and allowed to tell our grief story. However, unlike other issues, grief is the kind of pervasive issue that permeates all aspects of our lives, and yet mainstream society is truly out of touch with this reality. The typical workplace expects one to bounce right back to work within a week's time, and most work settings rarely talk about a loss. I am not sure if this is done out of fear or because it is deemed inappropriate to talk about grief at work. From my perspective this is not only unnatural, but unhealthy. Grief is an emotion that all of us experience at one point or another, and truly the only way to combat grief is to talk about it and to also be included somehow back into the world of the living (which means surrounding one's self with people the griever deems safe and trust worthy).

As my conversation with Maria did reveal today, it is easy for me to experience vast emotions in a short period of time. Some days or moments the reality of Mattie's loss is right on the surface, and in those rare times I will cry. In fact, this weekend, I saw news coverage of the christening of the US Destroyer Ship, the USS Michael Murphy. The christening took place in New York, and the Ship was named in honor of a brave and heroic navy seal who died in 2005 in Afghanistan, at the tender age of 29. To read more about Lt. Michael Murphy, go to: http://www.navy.mil/moh/mpmurphy/index.html. I saw an interview with Michael's mom, and the newscaster said "congratulations" to her on having a Navy ship named after the memory of her heroic son. I got the sentiments the newscaster was trying to convey, but chances are this mom would have preferred to have her son alive! As this mom was speaking, I immediately identified with her because seven years later, this loss is still VERY, VERY fresh for her. She said some days she is not sure how she gets through the day, and her candor and devastation were very real for me. So real, that I landed up crying while watching and listening to her speak. We lost our sons in two different ways, but at the core, I get the magnitude of her loss.

On a brighter note, I received an article tonight from my friend Karen. The article is entitled, "This Cabbie Just wants to make your day sweeter." I found this to be a feel good story, and I related to this Cabbie! There is something very special in sharing sweets with others when they are stressed. I know all too well that when living in a hospital, NO ONE is going to perk up or smile to receive nutritious and healthy food. Instead, the smiles and joy come from seeing sugar!!! This Cabbie shares my joy, and because of the generosity he received, he wants to pass this warmth along. The analogy for Peter and I, would be the food cart we offer at the hospital which provides free snacks (especially candy!!!) to families battling childhood cancer. Team Mattie provided us with countless snacks and for me hundreds of pounds of chocolate, so now in our small way we are  trying to return the kindness to others.
http://www.nydailynews.com/new-york/cab-a-sweet-ride-article-1.1175246#ixzz28UY3JcDg
 

Sunday, October 7, 2012

Sunday, October 7, 2012

Tonight's picture was taken in November of 2008. Mattie was in the hospital trying to recover from his second limb salvaging operation. That operation was extensive, because it involved his right leg, left arm, and left wrist. All three locations were operated upon in one surgery.... two of the sites (leg and arm) received a prosthetic and the third site (wrist) a bone graft. Despite the fact that three of Mattie's limbs weren't functioning at the time, he was determined to play on the computer. So his left leg took over, and his foot became so skilled, it acted just like a hand. This photo I entitle, "When there is a will, there is a way." I think this photo speaks volumes about Mattie's spirit and determination, because after such an extensive surgery which left him quite disabled, I am not sure the rest of us would have fared as well.


Quote of the day: Never give up on something that you can't go a day without thinking about. ~ Author Unknown


Tonight's quote seems to sum up our love for Mattie. For me the blog and the Foundation have become symbols of Mattie, and though there are days I would like to stop writing the blog, or even working so hard on the Foundation, I don't. I don't because by doing these things, I remember Mattie, and Mattie is the kind of child, from my perspective, you "can't go a day without thinking about."

Peter and I had another four hour long car trip today. We left New York at 10:30am and got to DC by 3pm. It was a rainy and cold drive, the whole way! Despite driving along VERY busy highways we did see wild turkey and deer along our trip.

We are both tired this evening, but we are settling in. I want to thank so many of you for checking the blog while we were away. I appreciated the emails as well, and I am happy our trip to the Cape brought back memories for some of you, and inspired others of you to want to visit this beautiful part of the Country.