Tuesday, November 1, 2011

Tuesday, November 1, 2011 -- Mattie died 112 weeks ago today.

Tonight's picture was taken in November of 2006. Mattie loved to paint and spent a lot of time on the floor of our living room using paint brushes, sponges, and at times even used his hands and feet to create with paint. As you can see here, he assembled this dinosaur model and then wanted to paint it. Mattie assembled many wooden models in his short life, several of which I still have all around our home. Before Mattie was born, if someone told me I was going to allow paints and paint brushes in our livingroom, I wouldn't have believed it. But when Mattie was interested in activities, I tried to support and nurture that interest. Needless to say, I became an expert on how to remove paint and play-doh from all sorts of things.

Quote of the day: If ever there is a tomorrow when we're not together…there is something you must remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart…I'll always be with you. ~
Winnie the Pooh

If I could give Mattie a voice now, I imagine he would be expressing exactly what Winnie the Pooh stated above. Well that is of course if Winnie the Pooh were an actual and real life character. To some extent, the joy, innocence, and love that embodies Winnie the Pooh lives within each of us. It is a challenging reality to know that like so many moms, I had a child, raised him, and then he got sick. Many children get sick with all sorts of things, but very few develop multifocal osteosarcoma (bone cancer in numerous bones at the time of diagnosis) and then died. Now that two years have passed since Mattie's death the only reminders I have that he existed are his things, pictures, and naturally his ashes which are in our dining room in an Italian made music box.

I think holidays and events evoke certain feelings and emotions in me. I am not a Halloween fan per se, but seeing this special or fun child holiday come and go yesterday was simply hard to accept. Imagine if you are a parent, that you are told your child has cancer, and worse after an ardous battle, that there is nothing left that can be done, and your child is going to die. It is an absolutely horrific and surreal experience, and yet this is our reality. My hunch is this reality is hard to fathom for my readers, and after all, why would you even want to imagine this even for a second. Losing your child redefines your life, what you talk about, the activities you do, and most of all it has a profound impact on your outlook about day to day living and the future. In so many ways it is very challenging for me to be friends with people who are moms. Moms talk about their children, a very natural and understandable thing. Yet how much of this can I absorb, when I know I am not living this life anymore? At some point, I find I just shut down, and this is where I am right now.

I am not in a writing mood tonight, so I am signing off for the evening, but want to leave you with two messages. The first message is from Mattie's oncologist and our friend Kristen. I am saddened to know that Kristen is relocating with her family from the Washington, DC area. We will greatly miss her presence. I condensed her message and the part which I did not include in the blog was the incredible juggling act she was performing last week as she continues to get ready to move out of town. Kristen wrote, "As I write this to you...I am surprised I made it through the week. But it makes me only appreciate more the skill, reserve, and perseverance which it took the two of you to manage a home, job, and family...all while Mattie was so sick. In times when I think things are difficult I only have to remember the two of you and I put life, with its little difficulties, in perspective. Thinking of you this Tuesday and everyday."


The second message is from my friend and colleague, Nancy. Nancy wrote, "As I read your latest entries and viewed the Halloween pictures of Mattie, I felt a real tug on my heart. Your writing is always meaningful, however, for some reason, telling some stories of this child important day gave new meaning to your grief and loss. I consider you Mattie's parents always and in every way, even in death, and as I reflect on my own children and grandchildren I understood how difficult days and activities of this nature have to be for Peter and you. It saddens me each time to realize the depth of your sorrow. I wish that I had a magic wand to erase these last few years of loss. What I will focus on today as another Tuesday without Mattie is upon us is the way that you give to him each and every day, not just on a 'fun' day."

Monday, October 31, 2011

Monday, October 31, 2011

Tonight's picture was taken in October of 2008, the last Halloween Mattie celebrated. I captured him on the Hospital elevator as he was going trick or treating from floor to floor. He was energized for that adventure but once it was over he was exhausted and very depressed. Mattie collected a good deal of candy that Halloween, but the ironic part was Mattie did not like candy. He spent a good portion of his time post-Halloween, sorting the candy he collected into piles by type, and literally he sold his candy to me and his caregivers for pennies. I do recall that year, when Mattie went trick or treating with Zachary, that a few houses gave out pretzels and chips. Mattie was thrilled, Zachary wasn't as much. The beauty of friendship was that Mattie and Zachary swapped chips for chocolate, and in the end they were both happy!

Quote of the day: Happiness is not a reward --- it is a consequence. ~ Robert Green Ingersoll


This afternoon, I received an email from Linda, Mattie's Childlife Specialist. Linda reflected in the email to me that she saw a child dressed up in a mummy costume in the hospital today, and couldn't help but think of Mattie. Linda's email meant a lot to me, because I find as time marches on it is very easy to feel very disconnected from others and from this child based holiday.

I still remember the process of how Mattie chose to be a mummy for Halloween in 2008. By October 31 of 2008, Mattie had completed his first limb salvaging surgery. His right arm was bandaged up in fact, and therefore Mattie was very cognizant of his differences and wanted a costume to hide his arm. The Lombardi Clinic, thanks to Hope for Henry (another pediatric cancer organization), is given hundreds of costumes each year for children who are sick. That year, Linda, Jenny and Jessie (his art therapists), allowed Mattie to be the first one to go into the clinic room to pick out a costume. The selection process for Mattie was harder because of his physical disability, and though this was never stated, I appreciated the fact that these women understood this. It would have been much harder for Mattie to find the right costume with the other children running around him and asking him questions. As soon as Mattie spotted the mummy costume, he knew this was what he wanted to be. He even tried on the costume right there in clinic, and it really worked for him. In a way, it made him feel like everyone else, because you couldn't see his bald head or bandaged arm.

Mattie celebrated Halloween in 2008, both in the hospital and with his preschool buddy Zachary. This evening, I went back to the blog on Halloween of 2008 and came across this picture of Zachary and Mattie together. Zachary was Indiana Jones and Mattie was according to Zachary "a Mummy Dude." The reflection that I wrote in 2008's blog, remains quite vivid in my mind today. But then again, I think the kind of friendship Mattie and Zachary had with each other was very special. I wrote, "While trick or treating, Zachary and some of his neighbors who went around with us, were running ahead in excitement from door to door to collect candy. However, Mattie was having a hard time keeping up (he had surgery about two weeks before Halloween). Mattie expressed his dissatisfaction and was getting upset. The beauty of what I observed next, I will try to describe. Zachary was absorbing what his mom was saying to him regarding Mattie, and also he was hearing or seeing Mattie's level of frustration. Zachary then told his neighbors that Mattie was his friend, and Mattie couldn't move as fast as them right now, and if they did not like it, they could trick or treat without him. It was almost hard to believe this dialogue was coming from a 6 year old. Because to me this was a very mature and thoughtful comment, and speaks to the strength of their relationship, a relationship that evolved over two years in preschool. When I see Mattie interacting with his friends. It is always hard, because I know he can't do the things they are doing now, and I know this can upset him at times. But then I also notice that through these rough times, I see the beauty of those around us. Zachary's simple comment today was case in point. Friendship goes beyond one's physical abilities and limitations, and instead is defined by something much greater, such as respect, loyalty, trust, and the sheer enjoyment of being with another person. I observed this tonight."

This evening Ann sent me a picture of her son wearing the Creeper mask I created. This is the second costume I have designed for one of Ann's children. The first one was a Greek goddess tunic. Fortunately when Ann asks me to do these things, she doesn't mention that a costume contest is involved. That would probably stress me out! Two years ago, Ann's daughter won a contest wearing the tunic I created and tonight apparently Ann's son won the "most creative" costume award at their neighborhood parade. So I would say I am 2 for 2! This is the most upbeat news I have to share for the day.

I never left our home today and I found by the time Peter got back from work I was snapping at him left and right. Certainly not intentional, but some times it is easier to take one's aggressions out on those closest to us. Though it was Halloween today, for me, it was as if I was living on a completely different planet, disengaged, isolated, and not fitting in. It seems with each year as we move further away from Mattie's death, the holidays only get harder, more complicated, and uneasy.

Sunday, October 30, 2011

Sunday, October 30, 2011

Tonight's picture was taken in October of 2007. Mattie was five and a half, in kindergarten, and was very excited about all the festivities associated with Halloween at his school. Mattie's lower school hosts a Halloween parade on October 31, and Mattie was thrilled to be able to show off his costume and to see the other costumes on display. That year Mattie chose to be an air force pilot, after he was enamored by his trip that spring to Andrews Air Force base. The challenging part about all of this was the only kids costume I could find was of a Navy pilot. So literally, I landed up removing the Navy patches on the jump suit, and thanks to my friend Charlie (a former Lt. Colonel in the Air Force), I was able to stitch in Air Force patches onto the costume. In addition, my neighbors found this adorable hat for Mattie, in which I attached more Air Force patches, and by the time we were finished, Mattie was a great looking pilot. It took many of us that year to complete this costume, and I am so happy my friends helped me, because Mattie knew the difference between a Navy and an Air Force pilot, and wanted to be accurate.

Quote of the day: The lines of giving are complicated, you never know how it will come back. But you have to give because you can't let the cord break with you. ~ Maria Diarra Keita


This is the second weekend in a row that Peter and I went to the movies. Totally unheard of for me! My parents and Karen recommended another movie to us, Moneyball. They knew Peter would love it because it focuses upon the game of baseball. However, because of the story line, they felt I would like it too. They were correct! I must admit though, through Peter, I have seen enough Red Sox games on TV, to have a feeling for the game and the stresses associated with playing.

Moneyball is based on a true story, which is most likely why it captured my attention. The published synopsis of the movie is:
Oakland A's General Manager Billy Beane is handicapped with the lowest salary constraint in baseball. If he ever wants to win the World Series, Billy must find a competitive advantage. Billy is about to turn baseball on its ear when he uses statistical data to analyze and place value on the players he picks for the team.

Bennett Miller, the movie's director said the following, "It is very much a film about baseball, but I saw it as a film about a guy whose life did not turn out the way it was supposed to …the way it had been described to him. He had a destiny that he was going to be great and it took him more than a decade before he accepted that things were not going to happen and now he could accept that this is his life or he could begin to question what had happened."

The premise of this movie, whether you are a baseball player or not, speaks deeply to all of us as human beings. We all have some sort of expectation, hope, or plan with regard to how we see our life unfolding and what our future will look like. Unfortunately our dreams do not always become a reality, in fact, some times life throws you a curve, and then what happens? It is easy to give up, lose faith, hope, focus, and determination. In fact I would say it is much harder to regain control and direction in your life when an expectation is NOT met than it is to actually make a dream come true. So though I do not have the foggiest clue about baseball, I related to the main character in the story, and admired his ability and courage to think differently and always stand by his convictions to make a difference. In fact, if you see the movie, you may be disappointed with the final outcome in the story. After all, we are programmed by society to believe the most successful person earns the most money! But Brad Pitt's character, Billy Beane, helps us understand that there is more to life than earning $12.5 million dollars. In fact, sometimes it is about loyalty to others and self, and changing the mindset of a particular industry (which is NO easy undertaking with professional baseball, or sports in general).

To read more about Moneyball, click on this link:
http://www.voanews.com/english/news/arts-and-entertainment/movies/drama/In-Moneyball-Baseball-Manager-Builds-Winning-Team-the-Unconventional-Way--130567918.html

As we are on the eve of Halloween, it is hard not to stop and think about Mattie and the loss in our lives. Today, Peter and I were both in Mattie's room, and as we were glancing around at his things, we realized we had to leave the room. No comments were necessary. As children all around the U.S. tomorrow dress up and acknowledge the day, we can't help but reflect on yet another event Mattie will be missing. A day which continues to remind us that we lost Mattie and we are no longer parents. Each season provides its own overwhelming challenges for us, and the Fall is filled with so many obstacles from the beginning of school, Halloween, Thanksgiving, and let's not talk about Christmas. For others around us, their worlds continue, they evolve, grow, and change, and for us, our world stopped on September 8, 2009. Yes will plug along each day, and most people would say we are functioning and accomplishing. Yet there is a difference between being these things and feeling alive.  

Saturday, October 29, 2011

Saturday, October 29, 2011

Tonight's picture was taken in October of 2003. Mattie was a year and a half old. Mattie was not wild about wearing costumes at all. Which is why all of his costumes typically were easy and comfortable to wear. Mattie gravitated to bright and bold colors, and he loved pumpkins. He made a very cute pumpkin that year and in 2003 that was his first year going trick or treating. We went with his cousins who were living in Washington, DC at the time, but Mattie had mixed feelings about the whole experience. Remember Mattie did not like candy, so going out to collect candy was not a motivator at all. As he got older, though he still did not like candy, he enjoyed going trick or treating with friends and running around in the dark and checking out pumpkins and Halloween lights.

Quote of the day: Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling into at night. ~ Edna St. Vincent Millay

It snowed in Washington, DC today! This is the first time DC has seen such cold temperatures and snow in October since 1979! Peter was outside in our garden transferring our trees into our home. Typically we do not need to winterize our trees until November, but since it was in the 30s today, we started pulling in plants. The transfer included our lemon tree, fig rubber tree, dracena, pygmy date palm, 2 cat palms, and a croton. If you could only see my living room! These are NOT small trees either. While Peter was outside in the snow, I snapped a picture of him. You can't see the snow very clearly, but you will have to take my word for it. The snowflakes were huge.

We spent the entire day at home. The weather did not inspire us to leave, which was fine, because we had to clean out and reorganize our front hall closet. That alone took hours.

I am happy that in the midst of being couped up at home and focused on chores, that we planned to go out to dinner tonight with new friends. My friend Heidi, from Zumba class, suggested that we all go out to dinner with each other. As my faithful blog readers know, Heidi is an avid blog reader herself, which is how she knew who I was when I walked into zumba class that very first day. Heidi has been very kind and thoughtful to me in class, and when I heard her husband is from Boston, I figured this would be a good match for Peter too. Many of my friends live in Alexandria, VA and over time I have gotten used to commuting to them, rather than the other way around. However, Heidi suggested we meet in DC and have dinner in town. This was a first for me. We went to a restaurant I have wanted to try for years and we had a great time together. We were at dinner for over four hours, and what I want to comment on is the Boston Red Sox connection. Peter and Heidi's husband, Phil, were chatting about the Red Sox and other Boston teams. The table next to us, I am sure had heard our conversation throughout the evening, but did not say anything. That is until it was time for us to have dessert. At which point, they leaned over and recommended the chocolate lava cake. We got to talking with them and Heidi asked where the couple was originally from. It turns out that the man was from Connecticut, and naturally as a New Englander, he was a major Red Sox fan. The next thing I knew, this fellow, Peter, and Phil were chatting amongst each other about the Red Sox. This couple even shared their after dinner wine with us (talking about the Red Sox can do that to people!). It was quite the scene, and from my perspective I would seriously like to do a sociological study on.... the culture, personality, and interpersonal bonds among Red Sox fans. It is an immediate identifier, and links people together instantly, from ALL around the world. In fact, I would even say that the Red Sox connections are so instantaneous that they trump other commonalities between people including religion, school, profession, and geographic identities. 

However, the camaraderie did not end there. Our waiter overheard us chatting and he chimed in as well. He was not a Red Sox fan, but a Yankees fan, and this added a spark to the evening. Socializing with people can be challenging for Peter and I. Especially if the people did not know Mattie or the battle we survived and continue to experience. In fact, I would even say it takes a certain amount of courage to want to re-engage with others and let people into our lives while grieving the loss of a child. Mainly for me the reason is I know I am different. Most days I feel like I am more a part of the sick or terminally ill world, than the healthy and thriving world. So I always wonder what will I talk about and will I relate at all to any of the conversation? That fear went out the window tonight, and we all had a good time chatting and getting to know each other. I was happy to see Peter engaged, talking, and having a good time. So despite the weather, dinner was the highlight of our day.  

Friday, October 28, 2011

Friday, October 28, 2011

Tonight's picture was taken in October of 2006. As I mentioned in previous postings, that year Mattie was a calico cat, like our cat, Patches. I made this costume originally for Halloween of 2005, but Mattie was hospitalized that year with sepsis. So fortunately we were able to hold onto the costume and use it the following year. Mattie and I designed this costume together. We went to AC Moore and picked out the brown, white, and beige felts (that represent a calico's spots), cut them, and Mattie helped to place them onto his sweat shirt and pants. Mattie also enjoyed watching me transform a black stocking into a cat's tail and my black hairband into cat ears.

Quote of the day: Not all who wander are lost. ~ J.R.R. Tolkien

On this day four years ago, Ann's brother died from cancer. Unlike with Ann's father (who also died in October), I never met Ann's brother. I have only heard about him through pictures and stories. Naturally spending a great deal of time with Mary, we exchange thoughts and feelings often about our sons with each other. I think it is important for you to know the fact that I never met Ann's brother, yet I find despite not knowing him, his death has meaning to me. I am not sure why. Certainly I am human, and as such I can't help but feel deep sadness when someone so young is struck by cancer and dies, and of course I know all too well the ramifications such a death have on those left behind. But I believe Ann's brother's death somehow integrates into my life. Maybe because this all happened only NINE months before Mattie was diagnosed with cancer.

In 2007, Mattie was in kindergarten. Because Ann's daughter and Mattie were in the same kindergarten classroom, we interacted with each other on occasion. We have known each other since 2005, since our children attended the same preschool and she and I sat on the preschool advisory board. But that was the extent of our knowledge of each other. To me our lives really began to intertwine, perhaps unknowingly, during Halloween of 2007. Ann was scheduled to run a party in Mattie's classroom that year. However, she was unable to do this because she was in Boston planning her brother's funeral. I remember finding out about Ann's brother and in the process being assigned Ann's tasks. I distinctly recall a fellow parent handing me all of Ann's Halloween bins with activities and she told me to run with the party. This parent figured because Ann and I knew each other from preschool, I would be familiar with the content in Ann's bins and how she wanted the activities to be presented. However, that couldn't have been further from reality! I most certainly never hosted a party with Ann and I had NO idea what was in the bins. In a way, opening up her bins and seeing what activities she had in mind for the kids to do was enlightening. When I opened the bins, I quickly determined that they reflected who she is as a professional. Ann is an occupational therapist by training and many of her activities provided the kids with opportunities to create and use their fine motor skills. I still recall one activity corner I set up in the room with Ann's materials. It was a bead corner, where the kids could string all sorts of great Halloween beads and make necklaces and bracelets. The fascinating lesson I learned that day was the boys were as equally engaged by the beads as the girls. I parked myself at this station during the party and assisted many children with the beads. I enjoyed watching the process unfold and observed how the kids negotiated and compromised with each other for certain beads.

I may not have known Ann's brother, but it was through his death, that I learned more about Ann. There were other parents who could have been assigned Ann's tasks, so why was I selected? I think some things happen for a reason. On October 28, 2007, the Red Sox won the World Series (A FEAT!), Mattie was healthy, and he was excited for Halloween to approach. This seemed like such a great date, and yet for Ann, it was a date that changed her world forever. Not unlike September 8, 2009 for Peter and I. So as Ann mourns the loss of her brother today, I find that this date for some reason has some sort of significance to me. For it was on this date, I learned that a young person, who I indirectly knew died from cancer, and now of course, with hindsight I also know that only nine months after this awful realization, Mattie was diagnosed with cancer. So for me October 28, is a turning point.

As today was the fourth anniversary of Ann's brother's death, I felt compelled to do something to support her in some way. However, having lost Mattie, I realize the complexities of anniversaries. It is hard to know what to do on these days, how to act, what to talk about, and whether you want to allow people into your world and to share your feelings. I know on Mattie's second anniversary this year, Peter and I were all over the map. One minute we wanted company and the next minute we wanted to be alone. So I am more than cognizant of the fears, irrationality, and emotions associated with grief. I could write a book on those internal feelings alone. We feel compelled to help a friend who is grieving, it is only natural. Yet I have found that it is just better to ask a person outright how you can help on an anniversary day, find out whether your company is desired, and if not (which is okay) to respect that. If you find that your friend who is grieving doesn't want your presence around, do not take it personally. Certainly it is natural that you would, but the feelings of wanting to be left alone have nothing to do with you or the importance of your friendship. Nonetheless, reaching out and communicating to someone on an anniversary date I feel is crucial. Grieving is ALWAYS about REMEMBERING. Remembering comes in many forms.......... emails, text messages, phone calls, and remembrance gifts.

This afternoon, I received a phone call while driving from Alison. Alison, as my faithful blog readers may remember, was our Team Mattie Fund coordinator. Alison asked if I wanted to get together for lunch, which I welcomed. Alison has been helping me brainstorm a Foundation activity that I was considering. As I told her today, the last lunch we had together, stimulated my thinking, and forced me to take a long and hard look at one of my goals. Her line of questioning made me seek out answers and do some further investigative work. I realize with Mattie's death, it is sometimes hard to say no to me or my ideas in fear of hurting my feelings. But Alison was brave enough to venture in this direction, and I realize it was because of her I was able to think this through and come back out with a more solid position on the subject matter. A position that will only help the strength of the Foundation.

Thursday, October 27, 2011

Thursday, October 27, 2011

Tonight's picture was taken in October of 2006 at a Fall Festival. When Mattie saw the cut out of one of his favorite characters, Bob the Builder, he ran up to it and as you can see he gave Bob a big hug. Mattie had Bob the Builder bed sheets and my friend Mary Ann, gave Mattie a Bob the Builder stuffed toy one year for Christmas. Mattie LOVED that toy, and Bob is still in Mattie's room today. He sits with some of the other Mattie favorites. Mattie gravitated to building, designing, and creating, and therefore Bob the Builder represented everything Mattie wanted to do and be.  

Quote of the day: Don't cry because it's over, smile because it happened. ~
Dr. Seuss

My friends Charlie and Mary Ann, both sent me an article today about an 8 foot Lego Man who washed ashore in Florida. Naturally this story caught their attention and they immediately thought of Mattie. It is funny how certain things now remind my readers of Mattie. Legos are definitely one of those objects. Legos will always be near and dear to my heart, because they were our therapeutic tools and really kept us sane while battling cancer and confined within a small hospital room for weeks on end.

The story about this 8 foot giant is fascinating. The message on Lego Man's plastic shirt reads "NO REAL THAN YOU ARE" across the front and the back reads "EGO LEONARD" with the number eight. I included a link to the story and the news video if you are interested in learning more below. But apparently this is NOT the first Lego Man to wash ashore in the world. Holland and England have had the same sightings! But who is placing these Lego Men in the water and why? The mystery continues, a mystery that would have absolutely intrigued Mattie!

http://www.huffingtonpost.com/2011/10/26/giant-lego-man-florida_n_1032597.html?icid=maing-grid7%7Cmain5%7Cdl1%7Csec3_lnk1%7C107915


This morning before I left home, I decided to upload some pictures of the Halloween mask I have been working on for Ann's son. This is a mindcraft creeper mask. It was a labor of love. Basically you are looking at a packing box that I transformed. The intensive labor was a result of the 400 colorful squares that I hand cut. Once the squares were cut in one and a half inch pieces, I then had to arrange them in a mosaic fashion on the box. In order to do this logically and methodically, I drew a grid on each of the five sides of the box so I knew exactly where to place each square. Without the grid, this would have looked like a mess!

Here is a front view of Creeper! Or as I have affectionately called him over the past week, Mr. Creepy! Mr. Creepy's nose is actually a cut out in the box, and on the inside I placed a black stocking, so that Ann's son could breathe better while this is on top of his head. This afternoon, I worked on gluing a hat inside the box, so that it is easier to wear and it won't move around so much when on one's head.

This afternoon, I met up with my friend Carolyn. Carolyn's daughter and Mattie were in the same preschool class back in 2005. We have been connected ever since. Carolyn is also our Foundation's raffle chair and has done an amazing job two years in a row. During raffle season she is my comic relief and we have some zany email exchanges! When Mattie was battling cancer, Carolyn would bring us dinners from the Cheesecake Factory. She introduced us to some very tasty items on their menu. So our tradition now is to meet at the Cheesecake Factory and have one of these tasty items. In a way, Mattie is with us in spirit during these lunches.

I spent the rest of the afternoon at Ann's house. I put the finishing touches on Mr. Creepy, and it is my hope that tomorrow everything has glued and set and will be solid enough for Halloween.

Wednesday, October 26, 2011

Wednesday, October 26, 2011

Tonight's picture was taken at another Fall Festival in October of 2006. If you have been tuning into the blog for the past couple of weeks, you maybe seeing a trend. What I am trying to illustrate is we covered a lot of territory during our October weekends together. Peter and I both consciously decided that over programming Mattie with activities would not be a good idea at any point in his development. Of course that decision was a curse and a blessing. It was a curse because that meant that we had to direct and guide the activities and be fully on all the time. The blessing however, is that it gave us the time to connect and bond as a family. Now that Mattie is gone from our lives, I never look back with regret. I would have hated to reflect that I had him jumping from one activity to the next, and thereby having only memories of interrupted and rushed moments together. Peter and I made this challenging decision, and it certainly wasn't easy especially when we live in the Washington, DC area, where I see children on complete overload. But one thing is quite certain about myself, once I have a conviction, I am not easily swayed or intimidated by the opinions of those around me. In the end, this was the right decision for us as a family.  I can say this with great clarity now that cancer has ravaged our family, that as a parent you will not be looking back at the achievements and successes your child had in school or during any particular activity. You will be evaluating the emotional ties, connections, and the bond that was created and will hopefully last a lifetime. Such bonds do not just happen, and healthy emotional connections take time, patience, and personal investments.


Quote of the day: Seeing death as the end of life is like seeing the horizon as the end of the ocean. ~ David Searls

I began my day with my walking routine. I find I always begin walking very tense, with a headache, and pondering Foundation items and of course the planning of the next Walk. However, as I continue walking, I always feel the tension dissolving, as if with each step, the stress and at times emotional pain are somehow escaping from my body. After my walk however, I went through my emails, and within seconds my stress level returned to its heightened state.

I learned today that one of the counseling professors, Chris Erickson, at The George Washington University died on October 20. I never experienced Chris as a professor, but we worked together in other capacities. Chris' battle with cancer began before Mattie's. She battled it for quite a number of years, but she did tell me one day that her condition was terminal because there really wasn't a treatment out there to help her. Unfortunately she was right. Chris and I did not always see eye to eye on things professionally. However, once Mattie developed cancer, she and I were most definitely on the same page. It is funny how cancer can change your life and in a way I hate to say this, cancer brings about enlightenment. I do not limit this enlightenment to just cancer, it could be any life threatening or traumatic experience that produces internal changes.

I can vividly recall the last conversation Chris and I had together. She told me that cancer taught her that she had to listen to her body, when she was tired, she had to rest. If she wanted to go on vacation and see different places and meet different people, then she should do that. That putting off things until tomorrow is ridiculous. Because tomorrow may never come, and then what? She also said that the competition and intense work schedule we follow in our area in the end serves no purpose. Chris and I actually had a very existential conversation that day, a conversation I very much appreciated. We had this chat prior to Mattie developing cancer. She was telling me that she admired my decision to be a full time mom and a part time professional, and told me that in the end that will be more important than what job I had, what papers I published, and the list goes on. As I replay this conversation in my head today, it is almost eerie. Eerie because Chris was 100% correct. Cancer strips away the nonsense in life. It is raw, it is real life and death situations, and it instantly removes the murky decisions we have to make. That is because the only decision to focus upon is how am I going to live and fight this disease TODAY. There is no tomorrow to think about, there is only today. It is a frightening and yet freeing existence.

Needless to say, I am deeply saddened that Chris, who was only 47 years old, has been struck down by cancer. This is yet another example of cancer running rampant and there was NOTHING the medical community could do to stop it.

In the midst of all of this swirling around in my head, I got an email from my friend Tina. Tina has a way of sending me messages on days when I seem to need them. She had no idea about Chris and we did not discuss this today, which was good. I needed a distraction and to chat with a friend. Because Tina and I do not know each other as mothers, this makes connecting with Tina easier for me. Tina and I became friends once Mattie died. Therefore our children do not bond us together, we are connected because we have many things in common. Each time we meet the list only gets longer as we found out today.  

Tuesday, October 25, 2011

Tuesday, October 25, 2011 -- Mattie died 111 weeks ago today.

Tonight's picture was taken in October of 2006 at Pumpkinville. Pumpkinville is a fall festival held in Leesburg, VA. This is a wonderful festival because it is located on an animal farm, where the children can actually meet and pet some wonderful barn yard animals in addition to participating in fun and creative activities. As you can see, I had Peter and Mattie stand by a pumpkin ruler to capture Mattie's height. What I also notice in this picture was Mattie's red coat. That was the first year he wore red! He picked the color, because typically I would buy him navy colored jackets. However, Mattie was all about bold and happy colors, and in all reality he was definitely right he belonged in a red coat, NOT a navy one.

Quote of the day: Unable are the loved to die for love is immortality. ~ Emily Dickinson

I think tonight's quote is truly beautiful. As soon as I saw it, it spoke to me. Maybe it spoke to me because of a chance encounter I had at lunch today. This chance encounter impacted my feelings for the entire day. After zumba class, I met up with Ann. She is working on a chocolate project with her children and we met each other at one of my favorite stores, AC Moore. After shopping we went for lunch. At lunch, I noticed a familiar face at the restaurant, Chris. I met Chris through Ann back in 2009. One summer, Ann invited me to her daughter's dance recital. While at the recital Chris came up to me, introduced herself, and hugged me because she felt she knew me from my writings. Chris let me know that she was an avid blog reader and thought about us everyday. Actually Chris' words at the dance recital were quite powerful and I had no idea how someone whom I never met could be so in love with my son and our story. Chris' feedback was so appreciated and made me feel like through the blog I was making a difference in how other people lived their lives. Our story doesn't end there. Chris and her family are still connected to us. At this year's Foundation walk, Chris and Chris' sister, who I believe lives in NJ, came to the walk with their family. In fact, Chris' children and her sister's children raised money for the Foundation and presented it to us at the walk. I was beyond touched, and very impressed with the initiative from these children.

When I met Chris today, I did not realize she was still a faithful blog reader. After all, I know the main draw to the blog when it was created was Mattie, and now that this cutie is gone, the fight is in essence over. The remaining battle is grief, and I know that isn't always fun to read about. Nonetheless, Chris got a hold of me today and hugged me and thanked me for my writings, my honesty, and for being SO real. She also let me know that she loves Mattie's pictures and getting to know him through the blog. What she was saying is she loves my son! It is the word LOVE that captured me today, because if people love Mattie, beyond my love for him, then in fact like the quote says he is immortalized. So though I have moments where I would like to say, NO MORE BLOG. Or I am tired of writing, or what could I possibly write about, I find the strength to continue writing because I have found through words, Mattie's memory remains alive and well. For some writing a daily blog maybe about getting words out to the masses, but to me the blog is very personal and perhaps is the living testament of how a seven year old touched his family and his community.

As I was having lunch, Chris came by to let me know that she thinks I am "amazing." That she admires my courage and most importantly she says she is so impressed with what I accomplish each year. So she says when I have doubts, I should just reflect on what she said. Her continual words of kindness and encouragement remain with me.

This evening Peter and I went to the Kennedy Center to see the new 25th anniversary production of Les Miserables. The key word in this sentence is NEW. Sometimes NEW isn't always better. That was certainly the case in tonight's performance. Honestly as I was sitting through the musical, I began to get more and more disappointed in what I was seeing. The staging and scenery were a nightmare, compared to the original revolving or turntable stage. However, the true disappointment was the singing. If you could call it singing, it was more like screaming. I am quite sure that if tonight's performance occurred 25 years ago, Les Mis would never have become the smash hit that it is considered today. The only thing this show had going for it tonight was the actual music and the story line which were all powerful and touching.

However, post-Mattie's death I realize my view of things can be skewed and distorted and things that once interested me, may now seem blah or boring. So when I got home tonight, I googled the Washington Post review of this performance. I don't always agree with the Post, but I felt I needed to read a critic's reaction. I included the link below if you would like to read it, but after reading this piece, I feel good knowing I am not living on another planet too affected by grief to be objective.

http://www.washingtonpost.com/lifestyle/style/les-miserables-back-at-kennedy-center-for-25th-anniversary/2011/09/29/gIQAnKId8K_story.html

I would like to end tonight's posting with a message from my friend and colleague, Nancy. Nancy wrote, "The pictures and stories about Mattie and October are precious. For many children Halloween is about candy and trick or treating, with Mattie it seemed to be pumpkins. (You would have enjoyed the restaurant we went to on Saturday evening as they were featuring pumpkin ravioli and pumpkin cheesecake.) Mom's note about Tricia was poetic and full of important information about Mattie and Tricia's care for him. It was exciting seeing that she was a finalist and I'll wait patiently to learn the final decision. It seems like many people have been involved with the blog recently as I noticed the hits are over 311,000. That says a lot about the team of Vicki, Peter, and Mattie Brown! I had the same reaction to the Anais Ain quote that Charlie sent and ended up reading it a second time too. Filters have their purpose and not everyone of them is for the good of a relationship. I remember some of the doctors and how they responded to all of you during Mattie's treatments and hospitalizations. Thank g-d for Tricia and the other wonderful members of Georgetown Hospital that you've described to us many times as they were able to assist, advocate, nurture, and relax all of you even at the worst of times. The quote by Sydney Smith was special to me too: "It is the greatest of all mistakes to do nothing because you can only do little - do what you can". In my opinion this doesn't apply to you directly as Peter and you were fierce advocates on Mattie's behalf. It does echo some of the other conversations that we've had about others reactions to Mattie's situation and now your feelings following Mattie's death. For some, the depth of feeling following a loss so deep is a feeling of helplessness on the listener's part. Of course, you were not looking for some to do anything because there was nothing that they could do, all you needed was for them to do what they could; and what you needed was for them to just BE with Peter and you. I forgot to mention that I was glad to read of Peter's trip with the other Peter. I know how important the outdoors is to "your Peter" and after his last two business trips, this must have been a welcome gift. Thinking of you and sending hugs today and always."

Monday, October 24, 2011

Monday, October 24, 2011

Tonight's picture was taken in October of 2006. Peter, Mattie, and I practically visited a different local fall festival each weekend in October. Outdoor time was crucial for Mattie and typically despite the temperature, we were out there right along side him exploring. In this visit to a pumpkin patch, Peter and Mattie grabbed a wheel barrel because Mattie's intention was to fill it with pumpkins to take home. This was an activity right up Mattie's alley. Mattie loved tools, things with wheels, and naturally pumpkins. So the fact that we combined tools and pumpkins in one setting was a big hit.


Quote of the day: We don't see things as they are; we see them as we are. ~ Anais Nin

My friend, Charlie, sent me this quote today. I admit when I first read it, I paused and had to re-read it! In a way this quote means a great deal to anyone who works in the mental health profession. The basis of our profession is that people come to us with issues and problems, but it is NOT necessarily the "things" in a client's life that need exploring or changing. Also in many circumstances the "things" in our clients' lives are unavoidable and also can't be controlled. However, the art of any good therapist is to be able to step into your clients' world and understand their perspective. Each of us approaches life with our own lens. This lens has been nurtured over our lifetime and through our experience (both good and bad) this lens develops a sensitivity and clarity for certain things. Which is why two people may interpret the same interpersonal interaction quite differently! This is because we see things not necessarily as they are, but as we interpret and perceive them to be. The art of therapy is to focus on clients' perceptions, on their lens, and in some cases assist the client in re-evaluating what they are seeing and hearing so that they can be more objective or simply view "things" in a different and more healthy manner.

It is ironic that I would receive this quote today considering that I spent the entire day presiding over an ethical violation case of a mental health professional in the District of Columbia. I was at this case for seven hours straight with NOT one food break. I am used to working with my board's attorney and my board members on these types of trials. But today, I learned my attorney was undergoing surgery, and I had to work with a different professional. Also in addition to my typical board members, members from the board of social work  were also participating in our hearing. It is hard enough to try an ethical violation case, to endure all these hours, but when you change some things up on me, I don't like it or always manage it well. However, what I did was adjust my perception. Yes things were going to be different because of the lawyer and board members, but that did not mean the hearing would be compromised. In fact, things worked out fine because I was very upfront and open about my concerns at the hearing. So instead of keeping my perceptions and feelings to myself, I aired them with the new attorney and what that accomplished was we were able to understand each other and developed our own working rhythm to have a successful hearing.

Needless to say, I am exhausted tonight. Sitting still, concentrating, and moderating witnesses for seven hours was quite taxing. Top it off with no food, and I was not a happy camper. So I am signing off for today and as always thank you for clicking in and staying connected with us!  

Sunday, October 23, 2011

Sunday, October 23, 2011

Tonight's picture was taken in October of 2006. Peter and I took Mattie to a local pumpkin patch and as you can see Mattie picked several pumpkins to take home with us. Mattie and I loved pumpkins. So much so, that we loved this time of year, because we could eat all things pumpkin such as cookies, breads, muffins, pie, soup, and even ice cream! I miss my pumpkin buddy and though I see pumpkins for sale all around me, Peter and I haven't purchased a pumpkin since Mattie died. This is not something we talk about, it just seems like an understood feeling between us.

Quote of the day: It is the greatest of all mistakes to do nothing because you can only do little - do what you can. ~ Sydney Smith

About a week or so ago, I received an email from my mom encouraging Peter and I to see the movie, Dolphin Tale. For the most part when Mattie was born I stopped going to the movies. However, that wasn't a loss or big adjustment for me. Mainly because I am not a fan of most modern day movies. In fact, I probably can count on one hand how many movies I see in a theatre in a given year. It is fortunate for the film industry that I am not a critic, because the industry would either go out of business, or perhaps be forced to make better and more inspiring movies. Movies that actually told a story and made you feel happy to be human rather than embarrassed by the perverse and sinister concoctions that Hollywood is so good at producing. I am telling you this because when my parents recommend a movie to me, they know it has to meet certain criteria in order for me to see it. When my mom said Dolphin Tale reminded her of Mattie, that peaked my curiosity. So I googled the movie and read the following synopsis..................................  

Dolphin Tale is inspired by the amazing true story of a brave dolphin and the compassionate strangers who banded together to save her life. Swimming free, a young dolphin is caught in a crab trap, severely damaging her tail. She is rescued and transported to the Clearwater Marine Hospital, where she is named Winter. But her fight for survival has just begun. Without a tail, Winter's prognosis is dire. It will take the expertise of a dedicated marine biologist, the ingenuity of a brilliant prosthetics doctor, and the unwavering devotion of a young boy to bring about a groundbreaking miracle--a miracle that might not only save Winter but could also help scores of people around the world. The real Winter, who plays herself in 'Dolphin Tale,' today serves as a symbol of courage, perseverance and hope to millions of people--both able and disabled--who have been touched by her remarkable story of recovery and rehabilitation.

I even read this Washington Post article about the movie and the true story behind Winter, the dolphin, before going to see the movie. Because of the content of the film, I decided to read the story line to Peter this morning, so he would be prepared.
http://www.washingtonpost.com/lifestyle/style/movies-true-story-behind-dolphin-tale/2011/09/20/gIQAZCFLrK_story.html


For Peter and I, this was a very emotional movie. We naturally love dolphins and are touched by most animal stories. However, this story hit a lot of personal and emotional buttons for us. The first thing that struck me immediately in the movie was the little boy named Sawyer, who rescues the dolphin. Sawyer is a misunderstood kid, who isn't like the other boys around him. He loves to build and construct things, he is the ultimate gadget kid without many friends. Well that is until he discovered his new friend, Winter, the dolphin. Then Sawyer discovered that he had many talents, compassion, and skills that are impossible to learn or develop inside of a classroom! Sawyer reminded me of Mattie. He was slender in build and his character just screamed out Mattie to me. Sawyer was sensitive, perceptive, and mature for his age. Just like Mattie.

However, what moved me was seeing the rehabilitation of a dolphin who lost its tail in a crab trap. A dolphin without a tail, is like a human without a leg. Winter and other dolphins who lose a tail typically do not have a long life expectancy. Dolphins may learn to compensate for the lack of a tail, by swimming like a fish (moving its body left and right, rather than typical dolphin fashion which is up and down). However, this form of swimming is not sustainable since the backbone structure of a dolphin is not built for side to side swimming motion. So long term swimming like this produces paralysis in dolphins. Therefore, the movie takes you on an emotional ride as Winter becomes the first dolphin to be fitted with a prosthetic tail. The technology of this invention fascinated me. Dolphin skin is apparently much more sensitive than ours. The analogy is if you scratch our skin within minutes we will notice that the scratch is barely visible. This isn't true for a dolphin. A light scratch will remain on a dolphin's skin for months. Therefore fitting a prosthetic on a dolphin is almost impossible, that is until the development of winter's gel (a new product designed especially for Winter, the dolphin). Winter's gel is a"sleeve" which helps keep the tail in place but avoids damaging the dolphin's skin, and makes the tail easy to remove. Such a sleeve, is now used on human amputees as well! It has been said that Winter's gel enables amputees to feel less pain and gives them much more freedom than they had before using their prosthetic.

Winter is considered a bionic bottlenose dolphin. A title I used often with Mattie. I always told him, post limb salvaging surgeries, that he was my bionic boy. He got a kick out of that especially when I joked with him that these special parts gave him extraordinary strengths. Strength that a typical boy wouldn't have. The movie in its own way showed us the mental and emotional adjustment this dolphin went through to accept a prosthetic limb. Not unlike what a human most likely faces. The connection however that touched my heart was that Winter has become a role model for children with disabilities. Needless to say this movie made us think of Mattie. Mattie being different, Mattie have prosthetics, Mattie not feeling normal, and Mattie learning to adjust to his disabilities. Throughout the movie we were both in tears, and by the end of the movie, it looked like someone punched me in the face. My eyes are still swollen and I feel like I went 10 rounds emotionally. The movie was touching in its own right. Seeing the connection between a human and a dolphin is very powerful. But if you are also a parent who has a child with a disability, or know someone who is an amputee, then I have no doubt this movie's message will hit close to home.  I leave you tonight with two links about Winter and the hope that this will inspire you and your family to see this movie. The message is beautiful and powerful, and illustrates what is right and meaningful about the human race.

Video of Winter (the bionic bottlenose dolphin)..............
http://www.youtube.com/watch?v=uh8xijsR1J0


Winter is therapeutic for people with disabilities...............
http://www.youtube.com/watch?v=pB-GQKyhdS8