Wednesday, January 19, 2011

Wednesday, January 19, 2011

Tonight's picture was taken in January of 2006. Mattie was almost four years old, and was in preschool at the time. In front of Mattie, you will see the gingerbread houses he and his classmates decorated in preschool that day (gingerbread houses that I made and assembled by hand). He was very excited that he got to take home the finished products! What captured my attention about this picture, was the purple balloon Mattie was holding! Some of you may recall my story over Christmas time about the purple balloon that magically appeared on our deck. In the cold of winter, we never expected to see a purple balloon just sitting out there, right next to Speedy Red. But there it was. Peter actually brought the purple balloon into our home while I was in California. Needless to say this purple balloon is still inflated in our living room, and just sits there looking at us. It seems very ironic to me that I would spot this picture tonight, and what are the chances out of all the balloons that could land up on our deck, it would be a purple one?!

Quote of the day: Death ends a life, not a relationship. ~ Jack Lemmon

Though I considered Jack Lemmon a wonderful comedic actor, his quote is quite serious and very meaningful. Mattie's death ended his physical presence in our lives, but the fact of the matter is he is my son, and will always be. That relationship began the moment I found out I was pregnant with him. I still recall the first sonogram picture I had of Mattie. The ironic part was his profile in the sonogram picture matched the real boy who entered the world months later. Peter and I fell in love with just a sonogram picture, and even though it is almost nine years later, I can distinctly recall that we plastered that picture everywhere in excitement. Sorry, I couldn't help it! I posted it here too!


Today turned out to be a day I hadn't quite expected. Mainly because by the end of the day I was actually productive and focused. When I stepped outside today, it was warmer than it had been for days. Not the kind of day I was expecting in January. I met up with Ann and we actually walked and shopped in Old Town Alexandria. Which is a very charming area, on a good weather day. During our journey, we stopped for lunch, and as we were talking, Ann happened to look outside and then motioned to me to look out the window. Passing right by us was Katie, Zachary's mom. Zachary was Mattie's closest preschool friend, they were inseparable together. Katie came inside the restaurant and we all had a good time chatting and catching up. Talk about chance occurrences.

At lunch, Ann asked me about the upcoming Mattie Miracle Cancer Foundation Walk. This dialogue got me talking about the ideas Peter and I have been brainstorming, and basically by the time I finished, Ann was strategizing how these ideas were going to get addressed and brought to life. I sometimes can get bogged down with thoughts and feelings especially as it relates to events honoring Mattie's memory. However, in Ann's subtle (or not so subtle ways), she enabled me today to take one step forward, which was what I needed to get started. By the time I got home this evening, I had a lot to talk to Peter about, and then began sending out e-mails and connecting with others. Others, are key, because Peter and I can't do this Walk alone, and fortunately we have a team of incredible people and friends to turn to. So I began the process tonight. Needless to say, when I left our home today, I did not imagine I was going to come home this motivated.


I also received two lovely email messages, that made me smile and I wanted to share them with you. A fellow elementary school mom, Sue, emailed me the other day. Sue was active in Team Mattie and is active in our Foundation. She has served as the co-chair of our children's activities at the Walk for the past two years. Sue wrote, "I just want to touch base and let you know that the SSSAS Brownie troops (2342 which is made up of Mattie's 3rd grade classmates, and troop 3969 which is the 2nd grade troop) have chosen the Mattie Miracle Cancer Foundation as one of the recipients for proceeds from our cookie sales. The girls are excited to sell cookies knowing that a portion of the proceeds will benefit Mattie's foundation."

The second email was from my friend and colleague, Susan. Susan visited Mattie many times in the hospital, and she understood him. Susan became famous in Mattie's mind for bringing him excavation kits in the PICU. Mattie transformed his hospital room many a day, to dig for plastic dinosaur bones! Susan wrote, "OK I don't know the significance of this, but thought I'd pass it along...I was coming home today along GW Parkway and just as I got to Roosevelt Island what should come on the radio??? Dancing Queen by ABBA. I have to admit that Mattie wasn't foremost on my mind there. I was singing along when ZONK I realized why the song hit me (I remember dancing down the hall with Mattie during PT with this blaring on the radio) and then ZONK again...there's Roosevelt Island. I don't claim that Mattie sends me messages per se, but maybe he wanted you to hear from a different source about about him."

Tuesday, January 18, 2011

Tuesday, January 18, 2011 -- Mattie died 71 weeks ago today.

Tonight's picture was taken in February of 2004. Mattie was about 2 years old. What you can't see from the picture was our deck was covered in SNOW. Mattie desperately wanted to go out and play in the snow, and so I dressed him up for his outting. Peter was heading outside with him and I was most likely still in my pajamas and hiding behind the door, so as to not get photographed. As you can see from Mattie's expression, he was partly fascinated and partly not sure he wanted to go outside. Needless to say, Mattie did venture out, and what he most loved about the snow was his ability to build and create with it! 

Quote of the day: When he shall die
Take him and cut him out in little stars
And he will make the face of heav'n so fine
That all the world will be in love with night
And pay no worship to the garish sun. ~ William Shakespeare


Today was a HARD day. The night before it snowed in DC, or I should say there was freezing rain, so schools were closed and most things were operating on a delay. However, I did get up and debated greatly as to whether I should go out or just stay home. I have been dealing with a migraine headache that has left me feeling very debilitated and sick to my stomach. However, I wanted to find a new book of quotations to use for the blog, so I was compelled to visit the bookstore. Going through books of grief quotes on top of how I was already feeling was most likely not a great plan.

As I entered the bookstore, I had a very difficult time even finding the grief section. I went through three different salespeople until I found one woman who could actually assist me. The section in this MASSIVE bookstore was very, very small. I think that alone speaks volumes on how WELL and freely we discuss grief in our society. NOT WELL! In fact, if you picked another psychological issue, I can almost guarentee you that there were more books to purchase on it than on grief. Amazing and yet sad.

While I was going through books, there was NO place to sit. So with my headache, I decided to literally sit on the floor. Well between being on the floor, having a headache, and feeling a bit overwhelmed, I found myself crying right in the aisle of the store. I remained at the store for over two hours on the floor, reading, crying, and listening to the music they had piped into the bookstore. While in this state, Peter and Ann were text messaging me back and forth. When I got to the point where I felt like Alice in Wonderland, drowning in a pool of tears, that is when Ann heard enough and got in the car and came to the bookstore to find me. She found me and instead of moving me, sat down in the aisle with me and there we sat. Talking about Mattie, life, loss, and how I was feeling. My intention was not to mobilize Ann to the bookstore, but as I told her later in the day, I am not sure I would have moved from the floor without her assistance. So I am happy she came, and I am happy she let me be however I needed to be. Rarely do I have a meltdown out in public, but I think there were many circumstances in place today that brought my feelings to the surface. So much so that it really did not matter where I was,  it was just going to happen.

Later in the afternoon, Ann and I got together with our friend, Tanja for lunch. Lunch was a good diversion, and helped me reset my feelings for a little while. At lunch, Tanja gave me a few gifts that she and her daughter, Katharina made for me. They handpainted a moon and a sun for me, both were pottery trinket boxes, that beautifully symbolize Mattie. Tonight I placed both boxes by Mattie's ashes, which I keep in an Italian handcarved jewlery box. I think Mattie would appreciate both the sun and the moon next to him.

I received a lovely story from my mom last night that I wanted to share with you. This weekend she and my dad felt connected to Mattie and she wanted to let me know about this special encounter.

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Inspired By Mattie by Virginia R. Sardi

Were they serendipitous or inspired encounters that unfolded on Sunday? I will let you be the judge but I sense the hand of Mattie’s will at work at the events that unfolded without any thoughts about Mattie as we made our plans for the day. Los Angeles was blessed with beautiful weather over the week-end, a week-end where the sun was shining, the sky a heavenly blue and the hillsides green and alive with healthy vegetation, the result of recent rains. Mauro and I decided it would be a perfect day to eat “al fresco” at one of our favorite restaurants that we recently visited with Vicki when she came to visit. Unfortunately, when Vicki was here, the weather was cold and blustery and we were forced to eat indoors. Today, however, was so glorious that it was a pleasure to sit near a babbling brook, the restful sound of water soothing to the heart and mind, putting us at a distance from the cares and burdens that normally occupy our daily existence. As I gazed upon this tranquil setting, I spied a ruby throated hummingbird on the wing. He was flying with the sunshine directly on his body, highlighting that magnificent ruby color so that it sparkled like a precious jewel. Whenever I see a hummingbird, it makes my heart soar because of its fragility, fluttery appearance of its wings and the elegance with which it can fly through the air defying gravity and reason. It was indeed the start of a beautiful lunch that did not disappoint. Seeing the hummingbird started me thinking about Mattie and how meaningful that would have been if he were with us to share the moment. It is times like this that I miss him dearly and revisit the painful loss of his presence in our lives. This I liken to a perpetual wound, sometimes felt consciously and at other times hidden from view, that creates a deep sense of melancholia that changes an otherwise beautiful world into shades of gray, black and white.

While thinking of what might have been had he lived, I spied a father wheeling his daughter, a child of no more than 6 or 7, to the table next to us. It did not take a rocket scientist to deduce that she had cancer. She was bald and unnaturally pale and fragile in appearance. She bravely and brightly made herself comfortable and courageously enjoyed the delights of a glorious day. Later, she was joined by several other families with children who came to sit at her table. She seemed happy and gay as she seized this moment to do what normal and healthy children take for granted: talk, laugh and have fun. Her dad was a trooper and did all he could to make the occasion special. He asked her several times what she wanted and did everything in his power to make things seem just right. It was déjà vu for me and Mauro as we recollected powerful memories of watching brave Mattie take on his cancer with a determination to make the most of his fleeting time on earth. Thinking about the hummingbird and the child in the wheelchair, I realize that if we had kept our original appointment and not moved it ahead by over an hour, this serendipitous encounter with a child fighting cancer might never have occurred. Although it reawakened painful memories, it is my hope that through Mattie’s foundation that Vicki and Peter have committed their lives to, this young and beautiful child whose precious life is on the line, will have the opportunity to conquer her cancer and lead a long and healthy life. I am sustained by that hope that when Americans open up their eyes to the need and sufferings of children ravaged, through no fault of their own to the destructive powers of cancer, that collectively they will demand that society put an end to the murderous assault of this disease on children and in my heart, I know that Mattie would want me not to lose my passion to see this become reality. Today, I felt strongly that Mattie wanted to strengthen my resolve to stay committed to his cause! Mattie, you can always count on me to continue the fight you started until it is won!
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I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Looking at pictures of Mattie when he was just a baby, last night in his tot-wheels, makes me think of my own son and the amount of love I have for him. It is crushing to know that you experienced just as much love for Mattie and he was so quickly taken away. Despite being there with you through at least some of your experience with cancer and now after the cancer...I see both of you in a new and different light. I see you before cancer...and my heart breaks even more. Know that I am thinking of you. This Tuesday and every day."

Monday, January 17, 2011

Monday, January 17, 2011

Tonight's picture was taken in February of 2003. Mattie was 10 months old! As you can see Mattie was playing in one of his favorite things, "tot wheels." Mattie loved his walker because it gave him freedom and put him in control. Though he was unable to crawl and did not walk at 10 months, when he was in "tot wheels" he became a speed demon. He literally would be running around the first floor of our home, and even making turns. Corners were NO problem for him. I felt the need to post this picture because I had a flash back of Mattie in the kitchen with me tonight, as I was chatting with Peter while preparing dinner. Sometimes the reality of Mattie's loss hits me, and it is usually at unexpected times. Like cooking dinner! It is hard to come to terms with the fact that Mattie isn't around and he will not be popping into the kitchen ever. It is almost like my mind is playing a cruel trick on me, except it isn't a trick, this is my reality.  

Quote of the day: My grief lies all within, and these external manners of laments are merely shadows to the unseen grief that swells with silence in the tortured soul. ~ William Shakespeare

I freely admit to reading each of Shakespeare's plays and I deeply admire his writings. I am most likely drawn to his works because of his understanding of emotions and the human psyche, and his eloquent use of the English language. However, after I read tonight's quote, I felt the need to pause and reflect on exactly what he was saying about grief.  
 
As I absorb what Shakespeare was telling us, I realize my lens or viewpoint is clouded in grief. Perhaps that is the best lens upon which to focus on this quote. Because to me, he was pointing out that grief is very much internalized. No one can grieve for you, no two people grieve the same way, and what captured my attention was that regardless of the external "laments" you hear from someone grieving, that this is only the tip of the iceberg. It is the tell tale sign of the greater turmoil that lies under the surface. It is under the surface and can't be seen or felt by others but it is definitely overwhelming and all encompassing to the owner of the grief. A "tortured soul." I would say that parents who have lost a child to cancer are indeed tortured souls, and we are asked to do the impossible each and every day, and that is........ to live with these memories!
 
I have wanted Peter to see the movie, King's Speech, since I saw it in Los Angeles during the holidays. We finally got to the theatres today, and I must say I enjoyed the movie just as much the second time around. Like in LA, today's theatre was packed. Every seat was occupied! During certain scenes in the movie, people were crying, and there was also a lot of laughter. Peter and I rarely go to the movies anymore, so he knew if I was suggesting he see this movie, it had to be special and memorable. I suppose I am intrigued by the true story told to us through cinematic art, in addition, I am touched by the incredible story of friendship that developed between King George the VI and his speech coach. The movie illustrates the value and the power a significant friendship can have in one's life. We certainly see enough of the sinister and corrupt sides of our world, so when something life affirming, like this movie, is showcased, I most likely cling to it. The movie ends with Beethoven's beautiful and powerful 7th symphony, movement 2, which has been swirling around in my head all day.
 
This evening, Peter and I were in the kitchen together, and I came across a photo posted to the refrigerator that I hadn't seen in a while. The picture was taken in July of 2008, at a conference I was hosting in San Diego, CA. This conference happened only days before Mattie was diagnosed. As I looked at the picture, I reflected on the fact that this is what I looked like before all hell broke loose in our lives. Peter then started talking about how special that week was when I went to the conference. He took the time off of work to care for Mattie. Mattie was enrolled in several summer camps that summer, and Peter said after a week of trying to follow the schedule I gave him, he came to the conclusion that he did not know how I did it. That was funny to hear! But the conversation went from funny to sad very quickly for me. Because I could picture Mattie and Peter together that week at home, I could picture them building me a fountain for my birthday (a fountain which I still have and run each summer on our deck) as a surprise, and I then remembered the day I took Mattie to the pediatrician to find out WHY his arm was bothering him. I remembered all these thoughts and feelings in a matter of minutes, and it was overwhelming. Overwhelming equals tears for me, and what started out as an innocent picture on the refrigerator, that had absolutely NOTHING to do with Mattie, made me very sad. Somehow when I think of Mattie in the kitchen, I always have the mental image of the picture I displayed tonight. He will always be my 10 month old running around and bumping into me in the kitchen in "tot wheels."  So I began tonight's blog with "tot wheels" and I now conclude tonight's blog posting with "tot wheels."

Sunday, January 16, 2011

Sunday, January 16, 2011

Tonight's picture was taken in February of 2003. Mattie was almost two years old. Mattie was standing under a gazebo, despite the fact that it was freezing out! We had taken Mattie to walk along a nature trail at a local park, and Peter and Mattie were goofing around together in the gazebo. Mattie was looking at Peter as they were chasing after each other. I snapped a picture of that priceless face in action, playing with his daddy!

Quote of the day: There is no pain so great as the memory of joy in present grief. ~ Aeschylus

As tonight's quote astutely points out, I think one of the most horrific parts of grief is remembering the joy, the happy times, and the way life used to be. Certainly Peter and I have a great deal of pain to reflect upon during Mattie's 15 month battle with osteosarcoma. Those moments will always haunt us, but the ones that do make me extremely sad, upset, and depressed are the simple thoughts that I will never see Mattie's smile again, I will never feel his hand holding mine again, nor will I ever hear him call my name, sing a song, hug me, draw me a picture, sit and have meals together, spend holidays together, and the list goes on. The pain exists even in the happy memories, or perhaps I should say especially in the happy memories. The longing of what you can NEVER have again! I would imagine people who grieve do not always verbalize this, because so many others around us believe that talking about the "happy times" is healthy and will make us feel better. But there are NO more happy times, the happy memories also get bogged down in the grief process, and I am so happy that one of the great ancient Greek playwright's, Aeschylus, had the guts to express this!

Sometimes it is the unexpected messages and gifts that make me pause and reflect upon certain acts of kindness. Today I received a lovely email message from Christine, my friend and Campbell's mom (one of Mattie's very close kindergarten friends). Christine basically wrote to me to find out how I was feeling. She had read on the blog that I was quite sick, and wanted me to know that she was thinking of me, and also let me know that if I was sick again, she expected me to contact her so she could help me. What do you say to such a kind message? Christine also asked me about the Foundation's upcoming walk, and I was very touched by her interest. I am very aware of why the walk was originally created back in May of 2009. It was to raise money for Mattie's treatment, who at the time was alive and struggling to fight osteosarcoma. In 2009, it was very evident why a walk was needed. But it may not be as clear now.  It is true that Mattie is no longer with us, and perhaps the interest in our Walk is not as prevalent or contagious within our community as it once was. However, though the physical presence of Mattie is not here, the memory of Mattie's struggle will always be a part of me, and therefore, my love for Mattie inspires me to do the Foundation's Walk each year. The Walk is about honoring Mattie's memory and raising awareness for pediatric cancer. It is vital to remember that unfortunately each and every day about four dozen children are diagnosed with cancer. Mattie may have brought this issue to the forefront in our community, but in Mattie's honor we attempt to make a difference in the lives of other children and families battling this disease. I know this is how I feel, but when I received Christine's email today with the same enthusiasm, it brought a smile to my face, because she showed me I am not alone in my desire or in my convictions. Which simply reminds me just how powerful a message from a friend can be, when going through a challenging time.

This afternoon, I got myself together and decided to go visit Mary, Ann's mom. My goal was to give Ann a night away from her daily routine. Mary and I chatted about many things and during our time together Mary typically tells me that I am performing a heavenly act. My typical response is, no, I am just being a friend. I have been couped up for two days now, that I felt as if I absolutely needed to get out of our home, and visiting Mary and helping her, at times takes my mind off of my own issues. As I was leaving the assisted living facility tonight, to my surprise a little girl was in the hallway and ran up to me. She couldn't have been more than two years old. This little one grabbed my hand and was trying to talk with me, she particularly wanted to show me the fish in the tank. We spent about 10 minutes together, until her father came to get her. Needless to say, the little girl did not want me to leave, but I told her that I would wave good-bye to her as I walked down each step on the staircase. That caught her attention, and she did wave. I told her that I visit the facility often and perhaps we would see each other again. In a way, the whole interchange caught me off guard, because it reminded me of how Mattie would reach for my hand, and guide me to whatever he wanted to see. Naturally when she took me to the fish tank, I couldn't help but remember all the times Mattie and I watched the fish at Georgetown University Hospital. Those fish were our lifesavers especially on the weekends, when Mattie was in a funk and did not want to leave his hospital room, much less see people. However, he was always motivated to go and feed and care for the fish. Funny how a simple gesture tonight, could bring back a flash of SO many memories.  

Saturday, January 15, 2011

Saturday, January 15, 2011

Tonight's picture was taken in March of 2003. Mattie was 11 months old. As you can see Mattie was being transported on Peter's back, which happened to be his favorite way of getting around. That particular day we took him to the US Botanical Gardens. That happens to be one of my favorite museums, especially in the winter months. For two reasons, it is one of the only places to see greenery in Washington, DC during cold weather months, and the other reason is that the gardens have a wonderful hot house room, which makes me feel like I am in Florida when it is cold outside. What I love about this picture was that each one of us had a story to tell. Peter was posing for the picture, and I was most likely trying to get Mattie's attention to look at the camera. However, to me, it appears that Mattie and I were having our own private conversation and as usual enjoying our cheek to cheek time.


Quote of the day: No one ever told me that grief felt so like fear. ~ CS Lewis


I had a horrific night and a challenging day. At 10pm last night, I began to have an intense headache and extreme nausea. Soon there after, the fun began. I had intense vomiting from 10pm to 4am. I was up that entire time, and was unable to find a position that brought me comfort. I wasn't sure in fact that I was ever going to stop vomiting, and feared that I would need to go to the hospital. If that wasn't bad enough, midway during this torture, I developed an ocular migraine. Some of you may recall that I get this issue under intense stress.

An ocular migraine can be described in the following way...... People with ocular migraines can have a variety of visual symptoms. Typically you will see a small, enlarging blind spot in your central vision with bright, flickering lights or a shimmering zig-zag line inside the blind spot. The blind spot usually enlarges and may move across your field of vision. This entire migraine phenomenon may end in only a few minutes, but usually lasts as long as about 20-30 minutes. Some people describe the feeling as looking through a cracked window. Having an ocular migraine is scary enough under the best of circumstances, but when you are intensely sick to your stomach, it just exacerbates the problem. Thankfully after 30 minutes my right eye went back to normal, but unfortunately I can't say that was true for my stomach.

By 4am, I was wiped out, with nothing else to give and finally went to sleep. I spent the entire day today in bed. I was still feeling sick to my stomach, and solved that problem by taking tylenol PM and forcing myself to sleep through the day. I am slowly on the mend, but feel as if I have been through WWIII. As I was roaming around our home last night and into today, I told Peter that I felt so trapped. I sat several times in Mattie's room last night, and grabbed Sunshine (Mattie's stuffed animal albino python) for comfort. Funny that I would be grabbing a python, but Sunshine was a powerful symbol of friendship for Mattie. Sunshine was given to Mattie by his pal, Jocelyn, at Georgetown University Hospital. Jocelyn gave Mattie this stuffed animal because he loved the real albino python he met at his 'reptiles alive' 7th birthday party (the last birthday party Mattie ever had).

I am thankful that Peter has been home and is not away on travel, because there is no way I could have made it the past two days without help. What you need to understand is that over the course of my marriage, I have vomited a great deal. Primarily since I get motion sick quite easily. Actually we joke about this often since Peter has helped and cleaned up after me in ALL sorts of places. The sign of true love, I suppose.

Friday, January 14, 2011

Friday, January 14, 2011

Tonight's picture was taken on April 4, 2003. Or in other words, Mattie's first birthday. Mattie had an Elmo party, since he was in love with the red furry Sesame Street character. Mattie was always attracted to red as a color, and Elmo's high pitched voice would stop Mattie in his tracks. In fact, Elmo was about the only thing on Sesame Street that truly grabbed Mattie's attention. When Elmo was on, he was transfixed to the television. Otherwise, for the most part, Mattie was rather indifferent to television. With Mattie there was NEVER a fear that he would be a couch potato. His mind, hands, and body were ALWAYS on the move!


Quote of the day: The world became eternally divided into a before and after. ~ Tove Ditlevsen


For the past week, I have been posting quotes that my friend Charlie gave me. A while back she came across a compilation of quotes from parents who have lost a child. Each of these quotes speaks volumes to me, and tonight's quote is absolutely STELLAR. I couldn't describe it better, because I do view my life in two distinct parts. Prior to Mattie's cancer, I viewed the world on a developmental continuum. In which I can recall aspects of my childhood, teenage years, college life, and naturally adulthood. However, all of this is NOW gray. Instead, what defines my life is cancer. I now have two distinct segments of my life....  precancer and postcancer. In some ways, I am sure parents can relate to this before and after connotation. After all, your life is one way before you have children, and then once a child enters your life, your world completely changes. Becoming a parent is a challenging endeavor, and unlike TV, movies, and books, raising a child doesn't always go according to plan. In fact, it may be the toughest job one undertakes in a lifetime.

Before Osteosarcoma entered our world, Peter and I classified our lives as BM (Before Mattie's birth) and AM (After Mattie's birth). I found raising Mattie all encompassing, and I do think at times when you become a mom, it is easy to lose yourself in the process and you almost forget who you are. You simply don't have the time to invest in yourself. Of course, by day I was a mom, and worked from home electronically, but by evening, I had to pull it together and teach at the university. That forced me into a different reality, but despite my professional hat, everyone knew about Mattie. In most of my classes, Mattie was definitely a focus of attention. I would bring pictures in, even sonogram pictures of Mattie to illustrate my points. As a professor, I always felt it was important to be approachable to my students and for them to see me as a person, not just someone who was evaluating them. This became my philosophy early on, especially since I went through YEARS of graduate school where most of my professors were not only unapproachable, but also unwilling to model and share aspects of their lives with their students. In the counseling field, I always felt it was important to model the actions and behaviors you hoped to receive as well as what you hoped to foster and nurture within others.

For those of you who knew me prior to Mattie's illness and death, I realize some of you struggle with my current identity. In fact, I went to my monthly professional licensure board meeting today, and one of my board members asked if I have resumed my teaching position. Somehow me and teaching go together in the minds of others, and I agree it is what defined me for over half of my life. However, you must trust me when I say that cancer has changed me. It has changed my outlook, priorities, and interests. The scary part is then, who am I now? I DON'T KNOW! Which is why I told Mary and Margaret I am living in the land of LIMBO yesterday. Being in limbo is not a comfortable place to be, most likely because I think it is possible to be there for quite some time. I have been beating myself up the past two days for feeling in limbo, but then it has dawned on me while writing tonight, that I just have to live with this feeling. This is yet another great feeling to contend with in the process of grief and losing a child. I could try to escape limbo, but in the end, that would only be a good short term solution, not a healthy long term one.

When I got home this afternoon, I felt like I had been up for days and was exhausted. So literally I crawled into bed and actually fell asleep. Peter got home this evening, and we did our usual Friday night routine which was to go out to dinner in our complex. We chatted, saw neighbors, and caught each other up on our day.

I found out yesterday through a fellow preschool mom and friend that a little boy who went to Mattie's preschool was diagnosed with cancer. The little boy, Warrick Wolf, is in first grade, and just had a tumor removed from his chest. He is currently undergoing chemotherapy, but at this point his outcome is uncertain. It is my hope that all of you will keep Warrick in your thoughts and prayers. For those of you who live in the Washington, DC area, I want to alert you to a fundraiser happening this Wednesday, January 19 at Chili’s Restaurant at Bailey’s Crossroads (5501 Leesburg Pike). This restaurant is sponsoring a fundraiser to help support the Wolf’s heavy medical expenses. Should you be interested in helping out, you should plan to take the flyer below to restaurant anytime on January 19, present it to your server, and 20% of your check will go to the Wolf family. Our hearts go out to the Wolf family, and as many of my readers now know, the incredible battle this family will have ahead of them.

Thursday, January 13, 2011

Thursday, January 13, 2011

Tonight's picture was taken in February of 2003. Mattie was 10 months old and sitting on Peter's lap. One of the reasons I am showing you this picture is because it highlights Mattie's relationship to his bottle. Mattie was a VERY active little fellow, however, when it came to consuming a bottle, a state of calmness fell over him. His arms did not move and his legs did not move, but instead, a look of absolute ecstasy could be seen in his eyes! The ironic part is as soon as the bottle was done, it was as if a switch was turned on, and Mattie would mobilize into action. Bottle times in many ways were special with Mattie. In which a calm and tender side of him were not only observed but felt. I am happy that Peter was able to share in these very precious and peaceful moments.

Quote of the day: I have always believed we can share our joy, but not our sorrow; sorrow is a solitary thing. Most of the days of our lives are just in different shades of gray. The sorrow went deep inside me. Joy is inside-out. Grief is outside-in. The sorrow stabbed into my soul. ~ Mare Sanford


Today was not the best of days for me. Not that any of my days are great, but some days are worse than others. Somehow today was one of those days. Not for any particular reason, other than I felt great internal turmoil. I relate very much to tonight's quote. Sorrow and grief are solitary things, they are hard to share, hard to explain, and most certainly hard to cope with. I couldn't have said it better, JOY IS OUT AND GRIEF IS IN.

I began my day with a surprise. I received flowers from one of my close graduate school friends in Boston. Jen and I survived a Master's degree in biology together and I was present in her life for the birth of one of her children and the death of her mom from cancer. When I met Jen, I had just graduated from college. I was dating Peter, but she was already married and had a child. Though we were in different points in our lives family wise, we understood each other and were very close. Somehow receiving roses today of various colors brought a smile to my face, especially when I read Jen's card. In a nutshell she said that she thinks of me daily, isn't sure how I live with such pain, and that she always remembers our special friendship. Indeed! Jen is one of the things I greatly miss about not living in Boston. Perhaps it is hard to understand how 12 roses could have such an impact over me, but they did. In fact, when I came home tonight, not in the best of places or moods, I looked at the roses and smiled again. I suppose it made me stop and reflect that my friend was thinking about me, cares about me, and most of all remembers our friendship.

I went out to lunch today with Alison and Ann. As my long term blog followers know, Ann and Alison were instrumental in leading Team Mattie, when Mattie was alive and battling cancer. We wanted to celebrate Alison's birthday, and to me Alison will always be my friend who introduced the word, HOPE, to me. As some of you may recall, when Alison came to the hospital in September of 2008 to meet me, she literally took off the necklace around her neck and gave it to me. The necklace had one word on it, glimmering with rhinestones. It said HOPE! To me that necklace was symbolic, and I needed to hold on tightly to that word. So from the moment Alison gave me this necklace, I wore it all the time. Well that is until the day Mattie died. Mattie maybe gone, but the aftermath of cancer is alive and well. I can recall many things about his treatment and death vividly, but what I also hold onto is the feelings associated with his care. Though cancer has been an absolutely horrific experience, I also experienced people in a whole new way. I suppose that is in reaction to the intensity of the situation, but the connections I made to people like Ann and Alison during Mattie's ordeal, will remain with me always. Though Team Mattie was disassembled in September 2009, this Team and what it did will always be alive in my heart. In so many ways, I am having an internal battle of good versus evil in my head and heart. Good, of course, being the memories of Team Mattie, and the evil, pure and simple is Osteosarcoma. The funny thing about cancer for caregivers (like Peter and I) is the disease harbors a permanent place in your soul. This is something that surgery, chemotherapy, or radiation can't remove. Which is why cancer in SO many ways is a psychological disease!

After lunch, I went to visit Mary (Ann's mom). While I was visiting Mary, Margaret (Mattie's preschool teacher and my friend) came by to visit as well. We all chatted together for two hours or so. Margaret brought Mary all sorts of goodies, and Mary was deeply engaged in our conversation. Margaret and I have NEVER had trouble chatting, we can do this for hours, and we covered a lot of territory today. Naturally the conversation went to Mattie. It was during that conversation, where I actually put into words my feelings. Which were that I feel like I am living in LIMBO. I am no longer the Vicki I was before July of 2008 (when Mattie was diagnosed). In fact, it is hard to know what defines me now, what fills my days, and what my future holds. I know I have felt this way for some time, but actually verbalizing it was somehow upsetting. As we turned to Mary, to see if she minded the direction of the conversation, she stopped us and reminded Margaret that she too lost a son, and gets exactly what I am talking about. Mary maybe 82 years old, and we may be in different places developmentally, but in many ways, we view the death of our sons quite similarly.

When I got home tonight, Peter was already home from work. He had a very positive couple of meetings today, and he wanted to share them with me. What I admire about Peter is he can feel the same emotions about Mattie's loss, and yet he functions and is very productive. So when he spoke to me about his productivity today, I felt myself sinking further into my state of limbo or shutting down. It took great efforts not to disengage completely. But as he kept talking, I felt more compelled to hear what he was talking about. As I told Margaret today, I consider myself very fortunate that Peter puts no pressure on me. Because I know how difficult it must be for him to go to work each day, especially when I know how he is really feeling.

I received a message from Karen (Keaton's mom) today. She posted this comment to the blog, and I just wanted to make sure my readers got to see what she had to say. Like Karen, my heart goes out to all the people who died in Tucson. Any time such a tragedy takes place, it is a sad day for our Country and for our society as a whole. But Karen brings up a good point..... why isn't the media and the President equally outraged over the fact that 46 children a day are diagnosed with cancer, not to mention around four die a day from this disease!? It is a perplexing question. Karen wrote, "Your quote of the day sure described my feelings today..aching..can't breathe...drowning in tears..and they are SO not supposed to be gone.How could this happen? As I read your anguished words telling the world of the indescribable pain that comes from the loss of a child, I hear my TV in the background, with the president of this country, telling us all how he is mourning the loss of the six people who were killed by a monster with a gun. All I can think is, why did he and the country not mourn the loss of the over SIXTY kids I knew personally, who were killed in the last three years, by a even more horrid and sadistic monster? What about Mattie, and Keaton, and Logan, and Cullen, and Jana, and Lindsey, and Nick, and Dan, and Jessica, and Sammie, and Brian,and Emma,and Paul, and Zoe, and so many others that would make this too long to post if I named them all!? Yes, the Tucson shootings were a tragedy, but where was the horror and empathy, when so many of our precious children were taken? If the country can come together over these six victims, and vow to make a difference, where is that same resolve to eliminate the monster in our midst who is killing our kids? Why does the world not get all worked up over this most horrendous and unfair crime of all...the ripping from our arms of our precious sons and daughters? Sorry If I sound unsympathetic for the victims of the Tucson shooting..I do feel for their families, and know the little girl's parents are forever destroyed, but it just seems that the world outside of our "cancer land" is not aware at all of the unbelievable tragedy that is happening in this cruel land we were forced into.We need the president to break into the regular scheduled TV, and make a plea to the nation on behalf of the way too many children killed by this cancer monster every day. By the way, Mattie was playing with his duck, of course, and he wanted to make sure you guys know he is still around."

Wednesday, January 12, 2011

Wednesday, January 12, 2011

Tonight's picture was taken in February of 2003. Mattie was 10 months old. Because Mattie wasn't a crawler, but desperately wanted to stand and walk, we tried every gadget and toy possible to encourage the activities he liked. As you can see the activity table in front of him was brand new. The box was behind him! However in typical Mattie style, the newness of the item was intimidating. So he looked at the table, but quickly turned back to Peter for help and comfort. Mattie spent a great deal of time at this musical table, but that was truly because Peter made it SO fun and appealing. Peter has that way about him, and in my mind, I can still recall what this activity table sounded like. I heard the SOUNDS that OFTEN! In many ways, I can look at my living room and dining room, and within each corner of these rooms, I can vividly recall aspects of Mattie's development. It all unfolded on our first floor, which may be why I don't spend much time down there.

Quote of the day: I ache… I can’t breathe… I’m drowning in tears. Their names aren’t supposed to be in granite. They are supposed to be on diploma’s from medical school, hanging on the wall in their offices. They aren’t supposed to be gone.  ~ Brenda Adkins

 
If you think it is possible to recover and HEAL from the death of your child, then I would like you to pause and reflect on tonight's quote. How can I ever be okay knowing that Mattie died before me? But not just died, he died in a most hideous and painful manner! If that fact alone doesn't get you, then how about the fact that Mattie will never receive a diploma, he will never work in an office, he will never go to a school dance, have a girlfriend, get married, and so forth? Is living to age seven fair or enough? Some days seeing and hearing about the things that other children get to do, and what other parents get to observe and participate in, is hard to absorb and manage. Yet what choice do I have? In many ways, I am not sure what is harder having a child living and battling with cancer, or losing a child to cancer and having to face each and every day without him? Neither are great, but knowing what I do now, I would take the battle any day.
 
As Ann's birthday is fast approaching, one of the things she wanted to do was to go to the factory outlets in Virginia. So today was the day we planned this outing. However, in typical fashion, whenever we try to plan something, things have a way of going awry. When we finally got on the road, the fun did not end there. Naturally between the two of us we got lost. No surprise especially since we are directionally challenged. Nonetheless, we got there, and were quite efficient despite the fact that it was freezing and extremely windy out! I went on ahead of Ann to each store, and seemed to chat with each salesperson in the store before Ann entered the store. That seemed to be the joke of the day.... that in a matter of minutes, I can know a person's life story. To me this is such a natural occurrence, that I don't pay attention to it. Well that is until Ann brought it to my attention. Needless to say, we have a way of entertaining each other, without really trying.
 
As we were driving back home this afternoon, I couldn't help but look at the Leesburg, VA countryside all around us. It is quite different from where I live in the city, and what caught my attention were the hundreds of Canadian geese throughout the landscape. In many ways they looked like polka dots along the fresh fallen white snow. Geese make the winters bearable to me. They are remarkable and loyal birds and I admire their understanding of the importance of teamwork in their flying V formations. Seeing geese, remind me of Mattie, and somehow I suppose it is my hope that as I see the geese, he is watching them with me.
 
Tonight Peter told me a story about Mattie's rubber duck that sits on our water dispenser in the kitchen. He told me the story as if it were a mystery to him, but to me it was NO mystery at all. It was a clear sign. This weekend, Peter went into the kitchen and found that Mattie's rubber duck was on the floor (it had moved or fallen from the water dispenser to the floor). So he picked it up, wondering how it got on the floor, and put it back on top of the dispenser. Tonight, he ventured back in the kitchen (after I had cleaned up in there, and everything was in PLACE), and low and behold the rubber duck was back on the floor. Before Mattie was even born, he was my little duckling. In fact, we decorated his nursery with ducks of all kinds. So to me, Mattie is trying to tell Peter something, through his rubber duck. After all, a rubber duck on the floor once is perhaps an accident, but twice in one week is ODD! If we only knew what the duck on the floor meant?! I am sure to the average reader it may sound like I have lost it, but natural occurrences and signs all mean things to me now. Perhaps for Peter and I it is our desperate attempt to feel a connection with Mattie.

Tuesday, January 11, 2011

Tuesday, January 11, 2011 -- Mattie died 70 weeks ago today.

Tonight's picture was taken in December of 2003. Mattie was about a year and a half old, and this was his first Christmas in Los Angeles with my parents. We took Mattie to Travel Town in Griffith Park. This is an incredible outdoor train museum which focuses upon the history of railroad transportation in the western United States from 1880 to the 1930's. The irony is most children do not realize they are entering a museum, because it is outdoors, and they are able to jump on the trains, and run around in the train cars, and basically explore, touch, and experience these great structures. As you can see in this picture, Mattie was fascinated by the train tracks and was trying to walk on them with Peter's help. Neither one of them knew I was taking a picture of them, which is most likely why this picture seems like a snapshot in time. It isn't a posed picture, but illustrates the natural dynamics in our family. When Peter wasn't working, he played a very active role in Mattie's life, and this picture to me captures their connection and bond.

Quote of the day: Small things matter so much to me now - the sunsets, perfume of flowers, smiles on faces, laughter, etc. They are all things I took for granted before but now I see them differently.
~ Janine Chappell

How is it that Mattie died 70 weeks (or in other words a year and four months) ago today, and yet it seems like only yesterday?  I have no answers to my question, but there are times I think about Mattie's cancer battle and I can't believe he went through this and that Peter and I survived. However, then I take a step back and look at my state of affairs, and I realize that our terrible life tragedy explains many of the symptoms, feelings, and thoughts I have today.

As I am writing tonight's blog, I am looking out the window, and I am seeing snow fall. This snow was MUCH anticipated in our area. In fact, the forecasters started talking snow as of last week. The pending doom of the storm caused havoc today, as can only happen in Washington, DC with even an inch of snow. Before even a flake fell today, after school activities were cancelled, as well as all evening activities. I was scheduled to attend two meetings at Georgetown University Hospital tonight, and both meetings were cancelled. Of course, I appreciate that greatly, since I have NO idea how to drive in the snow. I learned to drive in Southern California, and when I returned East to go to college, I never had the opportunity to drive in the snow. So basically I complain about Washingtonians, but I realize I am NO better. Peter says he wants to teach me to drive in the snow this year, I guess you are never too old to learn!?  

However, snow reminds me of Mattie. He loved sledding and building in the snow! Mattie spent most Christmas' in Boston visiting Peter's family. I remember one trip in particular in which there was a great deal of snow on the ground. Mattie's cousins took him sledding at their school. Their school had a huge hill behind it and all the children in the neighborhood were sledding on it. Fast motion and activities involving risk are NOT high on my list. Therefore, I translated many of my fears down to Mattie. However, Mattie wanted to join his cousins in the fun, so against my better judgment, I allowed him to go down the hill. He rode on a sled with his cousins, so he did not go alone, and Peter was at the bottom of the hill and I was at the top. It turns out that Mattie LOVED it. The faster he went down, the more he liked it. At times, I just couldn't watch him because he was making me nervous. Now however, I reflect back on that day, the only real day that he went sledding (since we rarely got snow in DC), and I am happy Mattie had that experience and had so much fun. With parenting you are always walking a fine line, between trying to protect your children, and yet at the same time giving them some freedom to explore the world around them. 

I started my day off with a follow up doctor visit. I have been working with this doctor since the fall of 2009, right after Mattie's death. She is well aware of the stresses in my life and is helping me with my recurrent physical issue. Today she wanted to perform some sort of procedure on me, and she sent her nurse in to tell me. I basically said NO to the nurse, and I said NO to the doctor as well when she came into the exam room. I would have to say after Mattie's illness, and having experienced and interacted with hundreds of doctors, I have absolutely no problem saying no, and telling them that I am not doing something if I feel it isn't necessary. I am not a physician, but when it came to Mattie and myself, no one knows us better.

I spent part of the day with Ann, and the rest of the day reading a book. The title of the book is called, Safe Haven, and though it is fiction, it speaks volumes about the importance of a safe place in one's life after experiencing a trauma. I never really gave this much thought, but I realize I have my own safe haven during the day. Some of you who are daily blog readers most likely know where this place is, it has become Ann's house. In the spring and summer, my safe haven is most definitely her garden. I certainly did not select this place, it actually presented itself to me in September of 2009, when Peter and I moved into Ann's house for two weeks. We moved in to help Ann with her dad who was dying, but it was through connecting over two deaths (Mattie's and Ann's dad), that this house became an escape for me. I am not sure why I never realized this, but as I have been reflecting on the content of this book, it simply jumped out at me and made sense.

I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. Kristen wrote, "I know this day is probably no easier than yesterday or the day before. But please know I am thinking of you and hoping you find a bright spot in tomorrow. Thinking of you this Tuesday and everyday."

Monday, January 10, 2011

Monday, January 10, 2011

Tonight's picture was taken in January of 2005 (Mattie was almost three years old). Mattie was invited to a birthday party and as you can see in front of him was a vanilla birthday cake. Mattie was thrilled! Mattie despised chocolate, and he would always get upset when someone served a chocolate birthday cake. Which from his perspective happened far too often! I loved watching him evolve. He went from a child who would make a big fuss when he saw a chocolate birthday cake, to a kid who was able to hold his tongue and be happy that it was a friend's birthday! Even if that friend served chocolate cake. Mattie learned that the party wasn't about the CAKE! Quite a valuable life lesson received at an early age.


Quote of the day: That’s the only thing that could help me at times, someone to help me cry. Just shut up and sit and be quiet while I cry. This thing called grief is a strange thing indeed. ~ Maggie Zarcufsky

Tonight's quote in a way has me laughing. Laughing because there is no way we can dictate how someone will respond to us while we are crying. To expect a person to "just shut up and sit and be quiet" is unrealistic. Perhaps if you are a trained grief counselor, you will be doing this, but chances are the average person will respond in some way when seeing a friend or family member crying. It is a natural instinct in a way, when we see pain in others, most of us want to help. We perceive that we are helping when we say something. Typically that is true, words are NECESSARY for communication, otherwise it is impossible to know how one is truly feeling. When someone is crying, our gut response is to find out why or to say everything will be okay. However, bombarding someone with questions or commentary while crying isn't helpful. It may stop the crying, but to whose benefit is that? Certainly not the person crying. We all cry for a reason, and though it is hard to watch and hear, it serves a purpose. Therefore interrupting the process from my perspective interrupts the healing process. So in essence I believe this is where tonight's quote is coming from. The author feels it is important to be able to cry in silence, yet as she so aptly tells us, we really don't want to cry alone. We want someone there with us to help us along and to share in our pain.

I continue to feel sick and am quite congested today. I went out for a little bit and along my journey bought several pounds of bird seed. We have kept our Mattie tradition going, by feeding the birds each winter. As I look at the bird feeder each morning, I can vividly recall the excitement and commentary I used to hear from Mattie as he would get a kick out of watching the birds peck at each other to get a turn on the feeder. You can learn a lot about birds by watching how they interact with each other and feed. We are visited daily by red headed finches, sparrows, starlings, and unfortunately now pigeons. Thankfully our feeder only accommodates small birds, and the pigeons are not graceful enough to balance on each perch and eat. My neighbor upstairs happens to be a birdwatcher and he stopped Peter and I on Sunday to thank us for feeding the birds. We have birds on our feeder ALL day long during the winter. Therefore, we go through seed like it is going out of style.

I received the following paragraph below today from my mom. Apparently the paragraph was part of a speech given by Congressman Pence from Indiana. The speech intrigued me because I did not know Calvin Coolidge's son died while he was a sitting president. In Coolidge's own words, you can hear the guilt he felt over his son's death and you can even hear how this death profoundly changed his attitude about being president and the remainder of his life. I struggle with the same feelings that President Coolidge elaborated on, and in a way, reading his words helped me understand even further that the issue doesn't lie with me, the issue (Mattie's death) is in the problem itself. An issue that is unsolvable, unble to be fixed, and which leaves a parent mortally wounded. It is very hard to pick up the pieces of your life, when it has been shattered. When you have seen the worst life has to offer, and when you have seen your child die in your arms and there is nothing you can possibly do to stop it from happening. This is life's greatest reality lesson. A bitter lesson, which I try to understand and write about each day on this blog.

Mike Pence, Congressman from Indiana, made a speech about The Presidency and The Constitution. In it, he spoke about the humility expressed by President Calvin Coolidge, who like Abraham Lincoln, lost a child while he was President. Young Calvin, the son who died, was very much admired by his father. The boy contracted blood poisoning from some activity that took place on the South Lawn of the White House. Coolidge wrote, "What might have happened to him under other circumstances, I do not know, but if I had not been president..." revealing his remorse that he was President and that was what triggered the event of his son's death. If he had not been President, he intimates, his son might not have been on the South Lawn. He also wrote, "In his suffering he was asking me to make him well. I could not. When he went, the power and glory of the Presidency went with him." How profound and deeply moving are these words of a President whose grief for the loss of his son made him question the importance of the Presidency in his life in the aftermath of the untimely death of his son. It should give pause to all about the passion we bring to the quest for wealth, power and fame for in the blink of an eye, their relevance to our lives may become meaningless by an unforeseen tragedy!