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!

Sunday, January 9, 2011

Sunday, January 9, 2011

Tonight's picture was taken in June of 2007. Mattie was attending his friend, Ellie's birthday party. Mattie loved that party for many reasons. First and foremost because many of his friends from preschool were gathered together for this event, and he felt very comfortable with his new found buddies. But second, Ellie had a pony party, and all the children got to ride on the pony that day! As usual, I had my trusty camera with me that day, and was snapping pictures. As you can see here, Mattie and his close friend, Zachary, were on the slide together. But clearly you can see a major dialogue and discussion was occurring between them. As if they were negotiating and analyzing something happening in the distance. What you need to understand about these two friends were they were inseparable. Their friendship just clicked from the first moment they met each other. Such friendships are rare and special and I am so happy Mattie got to experience such a close bond in his short life.


Quote of the day: Losing a child is like a broken down car. To go in reverse brings painful memories. To go forward is too scary without your child. So we sit in neutral with our hands clutched to the emergency brake, hoping someday to find a way to run again. ~ Denise Bellion

Well tonight's quote is an interesting analogy to surviving the loss of a child. I get this parent's point, but I look at it a bit differently. I am NOT driving a broken down car. On the contrary the car I am figuratively driving has been transformed from an automatic car to a standard shift car. On the surface, both cars look the same (or in other words I may physically look the same despite Mattie's death), however, if you have never learned to shift gears while driving, there is NO way you are going to be able to simply operate the car without it being a jerky experience and stalling out. Life without Mattie now is equivalent to being an inexperienced standard car driver. I go around town and life, but everything is confusing, I have no idea how to operate and navigate from moment to moment, and worst of all, I have no control on when my car (or literally my mind and body) will stall out.
 
I had another whirlwind of sleep last night. I woke up from a terrible dream and then could not go back to sleep. My dream was very confusing, and it involved surgery to my head. As a result of the surgery, I was left permanently blind. In my dream, I could see myself waking up in the recovery room, and being unable to see anything. I was screaming, beyond upset, and felt an incredible sense of loss for myself, but a loss that I wouldn't be able to see any of Mattie's things that surround me. Needless to say, once I woke up from that nightmare, I was unable to get back to sleep.
 
With several nights of inadequate sleep, and now a full blown head cold, I felt like the walking wounded today. Peter and I did go out for a little bit and headed to a mall I rarely go to anymore. It is the mall with the Lego store that Mattie frequented often. While I was shopping, Peter went to the Lego store and visited with Liz, the store's assistant manager and the person who has been extremely instrumental in helping us incorporate Lego's into this year's Foundation Walk. Feeling as depleted as I was today, I knew I couldn't go to the store, but I am so happy Peter did. Liz immediately recognized Peter, and Peter recalled to me his many past interactions with Liz when he and Mattie bought Lego kits together at the store. Needless to say, this particular mall is filled with incredible memories of Mattie for me. I spent many hours strolling around with him through the mall on cold days, well that was until he became mobile and made it quite clear that he HATED malls. Mattie couldn't stand crowds, loud noises, and chaos. Ironically I spent so many years protecting him from these things, that I have NOW become just like him. When overwhelmed by my physical environment, I will simply remove myself from it!
 
I spent the rest of the day today in bed trying to rest and recover. But sleep at any time of the day doesn't come naturally to me. I appreciate many of you writing to me today and promise to try to return emails soon.

Saturday, January 8, 2011

Saturday, January 8, 2011

Tonight's picture was taken in February of 2008. We took Mattie for a walk on Roosevelt Island, and regardless of the time of year, I always gave Mattie a bag filled with bread to feed the ducks. As you can see, there were many ducks that day coming by to greet him. Mattie and I loved birds and being by the water. Though you can't see Mattie's face in this picture, it does give you a "bird's eye" view of what weekends were like with Mattie. Regardless of weather, we went outside, walked, and experienced nature. Not sure how I managed those cold days, but the energy and curiosity within a young boy needed to be channeled and being couped up at home wasn't ever the right solution for Mattie.


Quote of the day: To look to the future when the past still haunts us is a daunting task, but what other choice do we have? We can’t change the past, we are stuck with it, all we can do is try to live the best we can and to make the best of it. ~ Jack Cassidy

"To look to the future when the past still haunts us is a daunting task," as tonight's quote so aptly points out. I couldn't have stated this better myself. After the death of Mattie, everything about life seems to be a daunting task. Getting up is daunting, progressing through the day is daunting, and then reflecting on a lifetime of days ahead like this is beyond daunting, it can be depressing and hopeless. Which is why I maintain my one day at a time philosophy. As a mental health professional, I was very familiar with this one day at a time philosophy that is so well detailed and espoused in many 12 step programs. However, I have to admit, I had NO idea the true impact of this philosophy until cancer came into my life. With Mattie's illness, I learned that I couldn't plan for a future, much less for the next day or hour. Mattie's treatment was filled with non-stop surprises and turns, and Peter and I had to rise to these challenges and think in a more level headed manner in order to manage Mattie's care. However, now that his care is over and he is no longer physically in our lives, LIFE HAS NOT returned to NORMAL! No.... for us life will never be normal, and having to accept that is a very bitter pill to swallow. Dealing with grief is in many ways equivalent to battling cancer. In July of 2008, when Mattie was diagnosed with cancer I moved from being a future oriented person to a present day oriented person. This aspect hasn't changed about myself, and in many ways, this has become my coping mechanism. Most likely I have had to adopt this philosophy for self preservation purposes, because if I have a down and sad day, it is very easy to translate this feeling into the future and the remainder of my life. By taking a one day at a time approach, I try to strategize and mobilize the efforts to get through that hard moment, in hopes that "tomorrow" may be different.

I fell asleep around 3am and so of course I felt physically tired all day today and my head cold is taking over. Apparently it snowed this morning, but I was in bed, and missed the whole thing. Peter told me about it. I despise the cold weather, and certainly seeing snow is NOT a motivator to get up or out of bed. However, Peter was persuasive today, and I got up and we went out together for a little bit. In the midst of bad days, my new friend, Karen, has a way of writing to me at just the right timeu, which perks me up. Karen and I are both moms who survived watching our sons die from osteosarcoma. However, until Karen, I really haven't been able to connect with another mom who lost a child to cancer. I will always remember the first and last support group meeting I went to at Georgetown University Hospital. After a two hour session, I left feeling agitated, angry, and totally annoyed that I had to listen to someone else's story. I do think that part of the problem with that group, for me, was that no one else in the group lost a child to osteosarcoma. Because these parents lost their children to other forms of cancer, it became a contest as to whose treatment was worse. That whole feeling made me absolutely incensed. In many ways, Karen and I are on even playing fields. Though our boys had osteosarcoma in different body parts, we both get how devastating a disease bone cancer is and how painful a disease it is from treatment through death. I sometimes wonder, if Karen were in the Georgetown support group, if I would have had a different perspective on the group experience and whether I would be advocating to have the group continue? All I know is I do consider myself fortunate to have found a mom I can relate to, who shares many of the same feelings and fears as I do, and who is able and willing to verbalize it with me. There are many unpleasant and not blog worthy feelings associated with dealing with the death of a child, and we voice some of these concerns together.

This evening Peter and I met Ann and Bob at Mattie's favorite restaurant. The restaurant was hopping tonight, but most of the managers at the restaurant know us, because of Mattie and the amount of time spent there. I can no longer really handle rooms with a lot of noise and commotion. So as the manager was seating us, I asked him to do us a favor and move us to a more quiet room. We literally went from room to room, until we found a table that seemed tucked away. In many ways, I appreciate this level of kindness, and I also appreciate not having to explain myself. At times it is surreal to sit across from Bob. After all Bob was the surgeon who operated on Mattie. He performed each limb salvaging surgery, when most orthopaedic oncologists wouldn't touch Mattie's case with a ten foot pole. Keep in mind that the first several months after Mattie was diagnosed with cancer, when I would see Bob, I would immediately break down into tears. I couldn't handle the thought of Mattie's body being cut into and such aggressive surgery being performed on a six year old! Clearly over time, I had to accept the surgery, because it was Mattie's only real chance at possibly surviving osteosarcoma.

How is it that Peter and I have become friends with Mattie's doctors? This is a most unusual situation, I have to imagine. I can't imagine that every parent who loses a child to cancer, connects socially with their oncologists after the battle! I am not sure I have an explanation for this, but what I do know is that Mattie's doctors were instrumental to our daily existence while Mattie had cancer, and because we are talking about life and death issues with regards to a child, this seems to bond people in indescribable ways.

When Mattie was sick, Peter and I experienced acts of kindness each and every day. However, despite his death, there are people who still reach out to us and try to tell us in their own way that we matter or that they are thinking of us. Our friend, Tamra, emailed us today to let us know that she made two kinds of homemade soups and was going to bring them over to us. I imagine Tamra did this because she knows I am not feeling well and because the weather depresses me. In addition to her wonderful soups, she brought me a touch of spring, and gave me a daffodil plant! It is a beauty, and I love seeing these happy yellow flowers, not to mention the wonderful chocolates that accompanied the plant! It is amazing what an email, a care package, and friend can do for your whole outlook!