Friday, October 29, 2010

Friday, October 29, 2010

Tonight's picture was taken during Halloween week of 2008. Mattie was trick or treating at the Hospital, dressed in his mummy costume. Pictured with Mattie was one of his favorite volunteers, Sally the Story Lady. My mom and I LOVED Sally! Sally had a way of making a story come alive. She would have all of us participate in the story and act out a role. Mattie usually did not participate, but would get a kick out of watching me make a fool out of myself as I was playing a part. He enjoyed that immensely! Sally came to the Hospital each week, and each week she came dressed as a character from the story she was going to perform. Sally was a true talent and she saw potential in Mattie. She told me early on that she found Mattie to be very intelligent and creative. I remember one day, I took a break and went into the hallway. I left Mattie with Linda, Mattie's childlife specialist. When I came back in the room, I found Sally in there with all her students. Students who were studying acting under her tutelage. Needless to say, she had Mattie up, engaged, and I could tell Mattie was directing things, and the students seemed enthralled by the instructions he was giving them. It was a sight to see! I did take a picture of that scene and will try to track it down to show you one of these days!

Quote of the day: I'm loving you, I know you're there yet I'm not sure where you are. Are you sitting here beside me, or were you the bird that flew? I feel the wind blow in my ears, and I'm wondering if it's you. Are you reading over my shoulder? Are you holding my hand right now? I want to tell you I love you, I'm not sure if I know just how. I can feel you wiping my teardrops, and asking me, please, not to cry. But I'm missing you, loving you so much. And I'm wondering why you had to die. ~ Brandy Sively Portera


In line with the rest of the week, today began with a difficult start. The kind of start where I saw no reason to get up. I have days like this, and frankly it has been one of those weeks. As I continue to write the blog, I struggle with what to report to you each day. I could certainly sugar coat the day for you, and I found myself subconsciously doing that for the past couple of days. Until, I finally asked myself why I was doing that? Was I doing that to protect myself or because I thought that this is what my readers would want to hear? That things are improving and life is "moving on" for Peter and I! Of course, my faithful readers will know that even on a GOOD day, I would never use the terminology "moving on" to describe my current feelings or state. I despise that term, almost as much as the "new normal!"

Then out of the blue, I received an e-mail from someone I did not know last night. She contacted me professionally to ask me questions about graduate school. Typically when I respond to these inquiries, I make sure I take Mattie's blog website off the footer of my e-mail. However, yesterday, I must have accidentally forgotten to do this. So this student wrote back to me thanking me for the information I gave her about graduate programs, but the basis of her e-mail was to thank me for writing the blog. She apparently read quite a good portion of it, and wanted me to know that it was timely that she connected with me since yesterday was the seventh anniversary of her youngest brother's death. I was very touched by her e-mail and what she quickly surmised from reading the blog is that we have quite a community supporting us. I found this young woman's observations of our story simply fascinating, and I guess the conclusion I came to is that the majority of people who come to read the blog do this because of my honesty and openness. Therefore, sugar coating things and also not being genuine serves no purpose to you as the reader or to me as the writer trying to express my thoughts and feelings through this difficult lifelong journey of grief.

As is typical, I received a text message from Ann this morning, but I did not respond. However, she is persistent especially when she senses that I am not in a good place. So she finally called me. We talked about various things at first, and then she started to ask me what was going on with me. She knew I was still in bed and really had no prospect of getting up. I talked and cried and Ann listened. There are days where I struggle with my purpose and lack of direction. I struggle with the fact that things that once interested me, no longer do, and I struggle with missing Mattie. I also struggle with giving myself permission to continue living without Mattie and to find happiness. There is a great deal of guilt one experiences, especially a parent when you realize you were unable to save your child from such a horrific disease and death. So allowing oneself to feel joy and happiness produces guilt. As we continued on talking, it became clear that I had to start working on a goal, a goal that would help me capture Mattie's life and memory. That goal is to write a book. That is a daunting goal, even under the best of circumstances. I know others have urged me to consider this, but with me, writing has to be on my own terms and when I am ready. I have to develop a certain mindset to do this, and there are things I can begin to do to get there. My philosophy that worked when I wrote my dissertation, was that I would do something each day toward  the writing and completion of this major research endeavor. Some days the something was big and other days it was small, but the point was to have it always in my consciousness! So I am trying to adopt this proven strategy for Mattie's book.

One of the things I began to do today was to read a book written by a mom whose son was also treated at Georgetown University Hospital. I find reading another mom's perspective is helpful for me, as I start brainstorming my own thoughts. The book is entitled, Saving Henry, by Laurie Strongin. Laurie started the Hope for Henry Foundation, which is the Foundation that donates Halloween costumes to children at local hospitals (in fact Mattie's mummy costume came from this Foundation!). Her Foundation does many wonderful things for seriously ill children, of which Mattie benefited from this generosity. I read the first four chapters of Laurie's book today, and as soon as I picked it up and read her acknowledgements, I began to cry. She wrote how Henry's diagnosis impacted her marriage, her life, and her future. As she elaborated on this, I found that I deeply related to what she was saying. We have two very different stories, and yet we share commonalities.

This evening, Peter and I went out to dinner with Nancy, my friend and colleague visiting from New York. We introduced Nancy to Mattie's favorite restaurant and chatted for many hours. Nancy lovingly created a beautiful scrapbook filled with all the poems she has written to us over the year since Mattie died. This is a very special and thoughtful gift, because I know this took time, love, and creativity to put together. Nancy has scrapbook pictures on each page of things Mattie would have loved, like bugs for example! The second gift Nancy gave us was a book entitled, Hug! Nancy collects things with hugs or things that show or discuss hugs (such as books, book markers, photos, etc.), and she shared one of her pieces from her hug collection with us. Within the Hug book, she wrote an inscription poem..............

For Mattie - The Power of a Hug by Nancy Heller Moskowitz

A hug warms the body.
Each of us seeks its solace.
Some come easily.
Others, a distant wish,
an inconvenience, a threat, no longer possible.
The hug between a parent and their child
Heaven.

Nancy got Peter and I to talk and elaborate on some of our feelings tonight. We had laughs and we also had tears. Since Mattie's death, I have many irrational beliefs, and as I was elaborating on two of them tonight, Nancy said that this alone should be a chapter in the book. Mainly because these are beliefs others who are grieving have in one way or another, and they have to be dispelled. For example, at times I blame myself for Mattie getting cancer. When I was pregnant with him I was working on my dissertation, and it was a highly stressful time in my life. I blame the stress for his illness. Naturally I know this serves no purpose nor is logical, however, parents of children with terminal illnesses struggle to find meaning and reasons for why things happen, and the natural person to blame is one's self. If you think this belief is over the top, I have many others. Needless to say, I am happy Peter had the chance to meet Nancy, and I am happy we had these moments to share our thoughts without the fear of being judged. As we completed dinner, we bumped into our friends Debbie and Peter at the restaurant. It is a small world, and I am finding that Mattie's favorite restaurant, is a favorite by many of our friends. Debbie is a daily blog reader, and she and her husband have been so incredibly supportive of us throughout this ordeal. Somehow seeing them at the end of the night was symbolic. It was symbolic of what Mattie left for us, an amazing community of loving people supporting us still.
I would like to end tonight's posting with a poem I received from my friend Charlie. She wished me "enough," and I most certainly wish this to all my readers.

I wish you enough...................

Recently I overheard a Father and daughter in their last moments together at the airport. They had announced the departure.
Standing near the security gate, they hugged and the Father said, 'I love you, and I wish you enough.'
The daughter replied, 'Dad, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Dad.'
They kissed and the daughter left. The Father walked over to the window where I was seated. Standing there I could see he wanted and needed to cry. I tried not to intrude on his privacy, but he welcomed me in by asking, 'Did you ever say good-bye to someone knowing it would be forever?'
'Yes, I have,' I replied. 'Forgive me for asking, but why is this a forever good-bye?'..
'I am old, and she lives so far away. I have challenges ahead and the reality is - the next trip back will be for my funeral,' he said.
'When you were saying good-bye, I heard you say, 'I wish you enough.' May I ask what that means?'
He began to smile. 'That's a wish that has been handed down from other generations. My parents used to say it to everyone...' He paused a moment and looked up as if trying to remember it in detail, and he smiled even more. 'When we said, 'I wish you enough,' we were wanting the other person to have a life filled with just enough good things to sustain them.' Then turning toward me, he shared the following as if he were reciting it from memory.
I wish you enough sun to keep your attitude bright no matter how gray the day may appear.
I wish you enough rain to appreciate the sun even more.
I wish you enough happiness to keep your spirit alive and everlasting.
I wish you enough pain so that even the smallest of joys in life may appear bigger.
I wish you enough gain to satisfy your wanting.
I wish you enough loss to appreciate all that you possess.
I wish you enough hellos to get you through the final good-bye.
He then began to cry and walked away.
They say it takes a minute to find a special person, an hour to appreciate them, a day to love them; but then an entire life to forget them.

Thursday, October 28, 2010

Thursday, October 28, 2010

Tonight's picture was taken during Halloween week in 2008 in the childlife playroom of the Hospital. You can see Mattie's mummy costume that he selected for himself, and next to Mattie was his big buddy, Brandon. Brandon was receiving treatment that week within the Hospital, however, despite being in-patient, Brandon participated in the festivities and was quite creative with his costume. He was a great pumpkin!  It is ironic in a way that a six year old and an 18 year old could be such good buddies, considering their vast age difference. But they were good for each other, and as Mattie told Toni (Brandon's mom) toward the end, "Brandon is my best friend!" While fighting cancer Mattie needed a friend who understood, who lived the process, who knew what it was like to feel sick from chemo, to not want to be around people, and to just accept him for however he looked and felt. Brandon was that friend. In all reality, I learned amazing life lessons that 15 months in the Hospital.

Quote of the day: I heard quite often men don't cry, though no one ever told me why. So when I fell and skinned a knee no one came to comfort me. And as I grew to reasoned years I learned to stifle any tears. No pain or setback could there be could wrest one single tear from me. Then one long night I stood nearby and helplessly watched my son die. And quickly found to my surprise that all that tearless talk was lies. And still I cry and have no shame I cannot play that big boy game, and openly without remorse I let my sorrow take its course. ~ Ken Falk

I selected this quote tonight based on some commentary I heard on the radio this morning. The radio host was telling her audience that a well known country singer is dressing up for Halloween. He is dressing up as Batman and his son will be Robin. She was clearly impressed that this singer was spending this time with his son and was truly enamored by this notion. She literally proclaimed him as a "great dad" on the radio! I listened to this hype and simply laughed. I am not downplaying this gesture, sure, a parent doing something fun with a child, and participating in such an activity are important for the relationship and the connection. But that alone doesn't qualify one as a "great" anything, much less a great parent! Which brings me to tonight's quote.

Men are socialized in our society to be the solid ones, the tough ones, the one's who show NO emotions (especially crying), and the even keeled ones. I am not sure who this stereotype is helping in all reality. I do think that men and women are naturally hard wired differently, but it is also difficult to distinguish the origin of these differences when societal forces condition boys and men to be a certain way. I do think that cancer however evens the playing field. Whether you are a man or a woman, when your child has been touched by cancer or a life threatening illness, crying, anger, rage, guilt, and sadness happens! The reactions to having cancer are gender neutral and instead they are simply HUMAN.

I received an e-mail from Kristen today. As many of you know, Kristen was Mattie's oncologist and through this ordeal has become our friend. Kristen forwarded me the link below and wanted to alert me to the fact that the Food and Drug Administration (FDA) has advisory committees, and these committee meetings are open to the public. Of particular interest is the pediatric oncology subcommittee on the oncologic drugs advisory committee. The next meeting is on November 30 and runs from 8am until 5:30pm. The public is welcome to attend and to make oral presentations (if you notify the committee prior to the meeting).  Kristen is aware of the Mattie Miracle Foundation's desire to become advocates for more effective treatment options for children fighting cancer. Keep in mind most of the current pediatric cancer drugs are over 25 years old, and only one new drug has been FDA approved in the last decade for children. Frankly I am not sure it is common knowledge that these meetings are open to the public.
http://www.ofr.gov/OFRUpload/OFRData/2010-27322_PI.pdf

This morning, I headed to the train station to pick up my friend and colleague, Nancy, who is in town for a conference. Nancy found me right away and we talked for 45 minutes straight as I brought her to the conference hotel. Nancy began the conversation by telling me how much my writings and blog means to her, and then she wanted me to know that she is in "awe" of me and what I have accomplished. Nancy had me reflect on my days in the Hospital and just how overwhelming those days were. But this cancer fight wasn't for just day or so, this was for 24 by 7, for over a year. I naturally know this on the physical level, since I feel the ramifications still of living life like this, but to emotionally reflect upon this devastation is overwhelming. Nancy is getting together with Peter and I for dinner tomorrow night, and this will be her first time meeting Peter. She never met Mattie, yet through the blog she feels as if she always knew him.

I met up with Ann and her mom, Mary for lunch. This was Mary's first time out of the assisted living facility since she was transferred there last week. It was a beautiful weather day, and I know that Mary appreciated being outside and to feel the warmth of the sun. These are things we take for granted, until you live in an institutional setting, and live with only climate controlled air! Toward the end of the lunch, Mary and I had a chance to chat together, and Mary said life is hard enough, but it is too hard when you lose a son! I couldn't have said it better myself!

After lunch, I was walking back to my car, and ran into a homeless woman asking people for money. The majority of people who passed her did not acknowledge her nor did they give her money. For the most part, Peter and I contribute to different charities, and I rarely give money to homeless individuals that pass me. However, this woman caught my attention. She held up a sign that she was trying to support four children, and had a very haggard look on her face. So when she approached me, I stopped to talk with her. I did land up giving her money. She said that she hoped God blessed me, and I wished her the same. However, as I left her, a manager from one of the stores in the complex came out and was screaming at her. He told her she couldn't be loitering around and if she did not leave, he was going to call the police and have her arrested. I tried to understand his point of view, but what I did NOT understand or condone was the rude and disrespectful manner he was talking to this woman. She was naturally embarrassed, as anyone would be if yelled at in this manner, and I left that scene feeling disgusted. Disgusted because of the heartless way human beings can sometimes treat one another. This whole episode bothered me on the way home, and I told Peter all about it. His one response was.... I did the right thing. Not sure, since a part of me felt like I should have stayed around to advocate for this woman.

Between this scene with the woman and feeling particularly down this week, I decided to try to walk. I walked 3.4 miles, however, I did not feel much better after the completion of that routine. So when all else fails, I rest. It is Thursday, however, in all reality I have felt this way all week. I suppose it is only getting worse as the week continues, and knowing that Sunday is Halloween only compounds the problems. Wherever I go I see Halloween decorations, cards, candy, and costumes. Halloween is about children, and in our case it only further illustrates the amazing loss in our lives.

Wednesday, October 27, 2010

Wednesday, October 27, 2010

Tonight's picture was taken in our living room during the week of Halloween in 2008. Mattie chose to be a mummy that year, and it was an excellent choice, because his right arm was bandaged up from his limb salvaging surgery. However, with this costume you couldn't tell that Mattie had an operation nor could you tell that he had NO hair. Mattie loved this costume for just these reasons! The costume made him feel normal, because he was able to dress up like the other kids. Mattie was the first one to pick out his costume at the Lombardi Clinic. Each year, a wonderful local organization, donates hundreds of Halloween costumes to the clinic. Mattie originally went into the clinic thinking he wouldn't find a costume that would work for him! To his surprise, he found this mummy costume. It was the ONLY one like it, and it fit him perfectly. It brought a smile to his face. In this particular picture, my mom took a picture of Mattie and I (I was a black cat!) dressed up to go to the Hospital Halloween party. Halloween is a big deal at the Hospital, with parties both in the clinic and the inpatient unit. The children are also escorted (with parents, a childlife representative, as well as a nurse) around the Hospital to collect candy from all the offices! Mattie walked around for over an hour that day, and seemed fine during the walk, however, once the walk was over, he was very depressed and needed time away from the crowds.

Quote of the day: The world will little note, nor long remember, what we say here, but it can never forget what they did here. It is for us the living, rather, to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced. It is rather for us to be here dedicated to the great task remaining before us - that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion - that we here highly resolve that these dead shall not have died in vain. ~ Abraham Lincoln, The Gettysburg Address

Lincoln's address is VERY moving. However, what if I did not tell you that Lincoln spoke these words, or that these words were part of the Gettysburg Address, then what? What would they mean to you?! Well frankly when I read these words, what struck me was that this speech could very well apply to Mattie and all the children who have lost their lives to cancer. Those of us who remain behind after such a tragedy are left with an "increased devotion" to the cause. The cause being to eradicate pediatric cancer, and to make sure that our "dead shall not have died in vain." Seems to me that Lincoln's words were poignant not only in 1863, when he delivered this speech at the dedication of the Soldiers' National Cemetery in Gettysburg, Pennsylvania, four and a half months after the Union armies defeated those of the Confederacy at the decisive Battle of Gettysburg, but even TODAY!

Being a cancer survivor, which is a title I think Peter and I have earned, evokes one of two reactions in a person. The first reaction could be that of needing distance from the disease, distance from hearing about the disease, and seeing others contending with cancer. The other reaction, would be the exact opposite. Wanting to advocate, help, and participate to make a difference. I am not implying that one reaction is better than the other, I am just saying I have noticed within the survivorship community these two stark contrasts exist. Both of which are very understandable to me!

My initial plan this morning was to get up early and walk. However, when I woke up, it was dark and pouring. So I jumped back into bed, and stayed there for a while. On these kind of days, I do struggle for a reason to get out of bed. I am involved in a couple of projects now that require research before I can procced. One of the projects you already know about, it is the project for one of the kindergarten classes at Mattie's school. I spent a portion of the afternoon at the library looking up the lives of Matisse and Picasso. I found some wonderful books geared toward children, and then also checked out some biographies on these artists so I can get more indepth information on their lives, artistic styles, and creations. I haven't spent much time in a library recently, so today's visit was special. It reminded me of all the days I have spent in the library over the years as I was trying to obtain my degrees. A library is like a second home to me, and even when Mattie joined the St. Stephen's and St. Agnes School, I became a library volunteer. I worked in the library every other week, for 4 to 6 hours at a time. Today, I chatted with most of the librarians, I had them help me search and find materials, and by the end, the stack I checked out was half my size.

When I got home, the test was how to carry all the books, dry cleaning, and other items upstairs to our home in ONE trip! Fortunately, the answer was to use Mattie's stroller. Mattie's stroller remains in my trunk at all times. In fact, many of Mattie's things are in my trunk. I naturally know Mattie isn't coming back to use them, but having his things with me are symbolic of his place in my life. Today I needed an extra set of hands to carry everything, and in some way, Mattie (through his stroller) was there to help me.

I was unable to do my walking routine today, and that definitely affected my mood. As the evening wore on, I got a phone call from Ann's cousin in Boston, JP. Many of you may recall that JP came to visit Ann in August, and during that time, I had the chance to spend time with him. The first thing that JP said to me on the phone was... "I miss Mattie!" JP met Mattie only once, in July of 2009, two months before he died. Yet JP understands the pain of losing someone very special, and I admire his courage to be able to verbalize his feelings and not worry how I will react to his comments. I couldn't have said it better....... WE miss Mattie!

I would like to end tonight's posting with a message I received last night from Mattie's oncologist and our friend, Kristen, Kristen wrote, "I hope you are doing well. I think of you often...which you may or may not know. Last year, about this time, I planted bulbs which came up several weeks later. They didn't come up this summer but I thought they would sit around until next summer. Well, would you believe that out in our flowerbed the same bulbs are coming up again this year?? There is a single tiny purple flower which has also come up. It's really the strangest thing. And of course, it reminds me of Mattie...because he would find it so magical. Thinking of you both this Tuesday and every day."

Tuesday, October 26, 2010

Tuesday, October 26, 2010 -- Mattie died 59 weeks ago today.

Tonight's picture was taken around Halloween of 2008. Mattie was home recovering from his first limb salvaging surgery, and he built "Mattie's Haunted Mansion." He used tinker toys, ghost and pumpkin cut outs, spiders, and what you can't see in this picture were the Halloween lights he eventually wrapped around this structure. At night time, this mansion had an amazing glow to it. Notice also that Mattie placed a pumpkin right in the middle of the mansion. In fact, as that week went on, more and more things were added and attached to this structure! By the time he was finished it was definitely a conversation piece. 


Quote of the day: The heart hath its own memory, like the mind. And in it are enshrined the precious keepsakes, into which is wrought the giver's loving thought. ~ Henry Wadsworth Longfellow


On the 59th week that Mattie has been gone from our lives, Longfellow's quote seems to capture the sentiments Peter and I feel. The heart may not have a memory, or a memory like we associate with our minds, but the heart can most definitely recall feelings instantly. The heart's recall is so vivid, that in many cases these memories can transported right back in time, to a time where that feeling was first captured. Feelings can be evoked from a sight, a fragrance, or the sound of a musical note. I have found these are all very true for me since Mattie's death.

It is ironic that Mattie began his life with difficulties understanding and processing his sensory environment. Here are some examples, Mattie did not like wearing certain clothes because of the texture, all clothing tags were a major issue, he had a huge physical space issue, so much so that if you came within 5 feet of him, this would make him upset and sometimes provoke aggression and biting attacks, Mattie had issues swallowing certain foods, he did not like the feeling of water against his skin, nor did he like sand or anything with a texture against him. Noises also induced fear. There were other sensory issues as well, but I wanted to give you a few examples so you understood what I was talking about and also understood the amazing work Mattie and I put into his occupational therapy sessions for two and a half years. He worked very hard to overcome these issues. Mattie was a trooper, his occupational therapist was a God sent, and in this learning process Mattie and I became even closer. In many respects, Mattie was like me. We are both overly sensitive to our environment, and therefore, many of the things I see, hear, and smell stimulate my feelings and memories of Mattie.

I went to the mall today with Ann, and one of the kiosks there was selling products that were scented with natural herbs. I quickly deciphered the smells of lavender and chamomile. Two fragrances that bring me back to the days when Mattie was a baby. Mattie had to be taught to go to sleep. Sleep did not come natural to him, and some of you may recall that by 16 months of NO sleep, I finally broke down read Richard Ferber's book, Solve your child's sleep problems, and within two days, Mattie was sleeping like a charm! Ferber became my first hero while raising Mattie! But prior to Ferber, I tried music, special lights, blankets, and of course baths with lavender and chamomile. Forget it! Nothing worked, other than I have associated lavender and chamomile with training Mattie to fall asleep!

I began my trip to the mall however, in a very fragile state. When Ann got to the Mall, I was sitting on a bench crying. Moments can hit me at certain times, and this morning was one of them. Ann and I have different styles. I am typically a very touchy feely person, and Ann may be perceived as the opposite. However, she understood how I was feeling and worked very hard at getting me out of my funk. Needless to say, when in a funk, shopping can be very good medicine. We went into Ann Taylor, and I learned about Miracle Pants today. What a NAME! Any case, they feel and look lovely and before I knew it, funk and all, I bought pants. We bopped around to different stores, and landed up in a tea store. Ann bought me jasmine tea, which is a fragrance that takes me back to the days I lived in California. I remember the first time I tasted jasmine tea with my parents on a vacation. So in essence today was a VERY sensory filled day for me, that reminded me of various points in my life.

When I got home, I decided to go walking on a treadmill. While in our complex's exercise room, I bumped into Maria, a big Mattie supporter, who runs our rental office. Maria follows the blog each day, so while I was walking, I began chatting with her about my visit to see my parents. We exchanged vacation plans and caught up with each other since we last saw each other. I landed up walking 3.78 miles and I find when I am bothered by things, I walk. The longer I walk, the greater the problem. Needless to say, I am all aches and pains tonight.

I would like to end tonight's posting with a message from my friend and colleague, Nancy. Nancy lives in New York and is coming into town on Thursday for a conference. I haven't seen Nancy in over a year, so it will be nice to have this opportunity to reconnect with a friend who has been so supportive through this journey! Nancy wrote, "I was so interested in yesterday's blog as it spoke on a very personal level. Not that others haven't , but, this one seemed more intimate. I am so proud of you for continuing to write and think that this account of your journey provides hope even when hope is dwindling within a family and this diagnosis. I believe children concentrate on what is in the moment, that's what becomes so frustrating for parents. They tend to project and worry about other consequences. Children see what they want and go for it, if allowed. I am so taken by Mattie's desire for creation and inventiveness during his illness. He wanted to experience everything he could. Peter and you gave him the tools by spending time and energy with him, no matter what the circumstances. I remember your feelings of frustration when times were tough and you gave of yourselves anyway. That behavior is what separates wonderful, caring parents from those that see their children as a symbol of their competence. I continue to be in awe of all the pictures you have of Mattie. What a history, although, one that ended too soon."

Monday, October 25, 2010

Monday, October 25, 2010

Tonight's picture begins a series of shots from Halloween 2008 that I will be sharing with you this week. This particular photo was taken in the childlife playroom of the Hospital. Pumpkins filled the room that day, and Mattie got to pick one and decorate it. You can see his creation behind us. Mattie felt that his pumpkin person needed a cape, so magically.... as only childlife folks can do, one appeared for Mattie. I honestly do not know what happened to this pumpkin because it wasn't allowed into the unit. Nonetheless, it was an activity which Mattie enjoyed, and with all of his art projects, it got us both engaged together creating, and distracted us from the reality we lived in 24 by 7.

Quote of the day: It is such an act of optimism to get through the day and enjoy it and laugh and do all that without thinking about dying. What spirit human beings have! ~ Gilda Radner

I do think that Gilda Radner was absolutely correct. The spirit of children is remarkable, and when in doubt of this I invite you to visit a pediatric oncology unit at your local hospital. The irony is we as outsiders are the ones who are scared, frightened, and depressed over the sights we see in these units. However, the children are just that. They are children. Despite life altering diagnoses, horrendous treatments, and incredibly debilitating side effects, these children smile, laugh, they want to have fun, and most of all they are the picture of what living is supposed to be about. They face each and every day, and all the uncertainty that comes with a cancer diagnosis, with grace, excitement, and a naive form of energy. But what is startling is they do not dwell on dying. You may be saying in reaction to reading this...... well that is because they are children, and they do NOT understand the notion of dying! I once would have agreed with you, but after watching Mattie, who was only seven, I have concluded that children DO understand death. They understand dying, and in Mattie's case he was MUCH more clued into his dire situation than I was. This INTENSE form of optimism, resilience, and joy for living were NOT constructs I actually observed and felt before Mattie had cancer. Spending 15 months in a PICU was a life altering experience, an experience that I would equate to our soldiers coming back from a war. I lived making life and death decisions for Mattie for over a year, I saw things that many people probably do not see in a lifetime, and therefore it is no wonder that integrating back in the daily world with daily stressors seems absolutely intolerable and foreign to me.

This morning, I heard a song by Chris Morgan entitled, "This Ain't Nothing." I had heard it numerous times before, but for some reason today the words captured my attention. The song opens up with a man whose home has been demolished by a twister in Alabama. All you can see is devastation on the video. Naturally we would expect this man to be in shock. But he isn't! He isn't because he tells a reporter that he has experienced the death of his dad, brother, and now his wife of 50 years. That is SOMETHING! The rest is NOTHING! Time and money can replace what he lost in the twister, but the death of his loved ones is not correctable, fixable, and no amount of resources is going to make this problem better. I couldn't have said it better! I attached a link to the song below in case you are interested in seeing the video.  
http://www.youtube.com/watch?v=eSdItuvBxc8

I began my day by walking. I walked 3.39 miles, and have begun to try to jog periodically in my routine as well as do stretching exercises. The initial five minutes for me of getting started is always hard, and I usually begin by feeling exhausted. It would be very easy to want to quit within the first few minutes, but I try to push through that feeling. Today was a partly cloudy day in Washington, DC, but the temperature was lovely, and being outside seeing the trees and hearing the birds was lovely. As my walk was coming to an end, I picked up a beautiful purplish colored maple leaf that had fallen. I placed the leaf on the dashboard of my car, and then placed Mattie's plastic lizard on top of the leaf. Mattie loved collecting leaves, and Peter and I each have a pile going dedicated to Mattie. Peter is a bit more creative with his leaf collection, and I must say his display caught my eye when I returned home on Saturday. He has the leaves lined up by our door, by the light fixture. But they seem to be standing upright and greeting visitors who come to our door!

I met Ann today after my walk. Some of you who read the blog daily, may have asked yourselves how do I handle vacations or time away from a friend who has been right by my side from day one to pick up the pieces? The subject matter of attachment is one I have become well versed in since Mattie's death, and with time, I will share with you my thoughts on this and the role of friendships in my life as a survivor of pediatric cancer. Suffice it to say, Ann and I accomplish the mundane together, but if you spend time with us, you realize even the mundane isn't so mundane with us. We naturally feed off of each other, and I think it is very special to be able to have a friend, where just doing the everyday things together is enough. Sure we also like the bells and whistles too, but unfortunately life isn't always filled with them.

Later in the afternoon, I went with Ann to visit Mary (her mom). Mary has moved to a new assisted living facility and is adjusting quite well. Mary wanted to hear about my trip, about my mom, and what it felt like to be home. Excellent question. Being home is CHALLENGING. Not that being away isn't, but being away separates me from the constant reminders all around me. I think as time has passed since Mattie's death, I have come to realize that for us this is as good as it gets! This is our reality, and with time the reality becomes sharper, clearer, and more pronounced. I know that Peter feels the same way, and therefore I have to believe that the death of a child is quite different an experience than a more expected and natural one.

Sunday, October 24, 2010

Sunday, October 24, 2010

Tonight's picture was taken in October of 2007 on our deck. We took Mattie on that particular day to his school's Fall Festival. He had a wonderful time, running around with Charlotte, Campbell, Livi, Kazu, and Bethie. It is a day I won't forget any time soon, and I honestly can't believe that since Mattie's cancer diagnosis, he has missed three other Fall Festivals (2008, 2009, and 2010!). The Festivals continue, and yet for us the festivals have ended (literally and figuratively!). At the Festival, Mattie jumped on every moon bounce possible and as you can see in this picture, he had his face painted and fake tatoos rubbed onto both hands. The mascot or team name at Mattie's school is The Saints. So on his face, someone painted, "Go Saints," in Saints' colors! Mattie was very proud of his display of school spirit and wanted to take a picture of this accomplishment. What I captured from that day, and remains within my heart still, is the FEELING from attending the Festival. Mattie, Peter, and I left the festival feeling as if we were part of a community. Mattie clearly was comfortable at his school, he had friends, and felt secure enough to run around and be himself. In the midst of his fun, Peter and I had the chance to connect with the parents of Mattie's friends. Parents who are still our friends today. I guess I feel the need to comment on this because from experience connecting with those who are like minded and share similar values and priorities doesn't happen easily. Luckily for Mattie and I, this happened within the first month of his kindergarten year. Fortunately it did, because in our case, time was definitely NOT on our side.

Quote of the day: Some win eternal life only after many years, others, a single hour. ~The Talmud


I believe tonight's quote very much applies to Mattie and all the other children who lose their lives in such an untimely fashion. Some of us have to live a long life to qualify for eternal life, but Mattie and these other precious children who suffer at the hand of crippling diseases and accidents have nothing to prove. Within their short lives, they accomplished what was intended for them. Though I do not understand why children have to suffer so and die, I do understand that Mattie's life achieved something. In fact the power of that "something," I am still trying to comprehend. However, one thing is clear, my purpose is to help illustrate, explain, and describe to others what was gleamed from Mattie's short life.

My flight from Los Angeles to Washington, DC yesterday was uneventful. It wasn't a full flight, which was a blessing. For me it is hard enough to be on an airplane, but when I feel confined and packed into a row surrounded by people, it makes how I feel much worse. I noticed passengers are friendlier, happier, and more accomodating on a flight where they have more room, freedom, and access to bathrooms. Naturally if the passengers are more relaxed so are the flight attendants. As we were going through turbulence, I appeared to be the only one holding my breath and grasping to the arms of  my seat. In the process of holding my breath, I concluded that someone like myself should be part of every pilot's and flight attendent's training. That may sound funny, but the airline industry is a service industry, and I think trying to understand the fears and concerns of those aboard your aircraft is important. It can only provide insights into how to provide more effective service. First thing I would make mandatory on every flight is that window shades must remain open during take off and landing! When I got on the plane yesterday, I sat in a row with people on either side of my aisle who shut their window shades. So I literally couldn't see out of the plane as the plane was taking off or landing. For someone like myself who is very sensitive to motion, not being able to see out was painful. In fact, in order to manage this take off, I practically was performing cognitive behavioral therapy on myself.

As the flight continued, I began reading the book I brought with me. I finally finished it on the flight and it was a good distraction that took my mind off of turbulence and other noises. However, the lady next to me had me jumping up a lot so she could use the restroom, which was fine, but when I sat back down in my seat, I realized I LOST my bookmark. That may not sound like a calamity to most of you, but for me, that is a major problem. Because my bookmark is the gold ribbon we received from the Candlelighter's Christmas Tree ceremony that occurred in December of 2009. Some of my readers may remember that Peter and I went to this ceremony. At the ceremony, there is a huge Christmas tree, and on the tree is a gold ribbon with a child's name on it who has or had cancer. On my gold ribbon it says, Matthew J. Brown, Washington, DC, Age 7! Since I flew in the evening, the plane cabin was dark. I tried to look for something shiny on the floor that resembled the ribbon, but I couldn't see anything. I tried the chair in front of me, in back of me, and so forth, NOTHING! Then I looked further back down the aisle, and sure enough, six rows back I could see it. I jumped up and grabbed the ribbon and secured it to my book. I am not sure what the ribbon signifies, but it is another tangible symbol of Mattie, and there was no way I was leaving it behind on the plane.

Yesterday, before I boarded the plane, I had a delightful email conversation with a young woman, Laura. Laura is Scottish and lives in England while she is studying to become a commerical airline pilot. I have never met Laura in person, though Peter has because Laura is the neice of Peter's boss, but I am very impressed with her depth and sensitivity through her emails. She reads the blog daily, and when she read about my apprehension on flying, she wrote to me. Laura explained the extensive training pilots undergo, their experience in the air, simulating different flying conditions and scenarios, and why there is turbulence and how pilots use it to the benefit of the flight. We chatted until the time I was boarding, and what I concluded was I would do much better flying if Laura was the pilot. I admired her commitment to study, her passion for flying, and her abililty to cope and manage the stresses of flying a passenger plane! So in a way, it is thanks to the blog, that I have the opportunity to meet extraordinary individuals like Laura.

When I got home last night, I was in no mood to unpack. In fact, in all my years of travel, I never came home before and refused to unpack. This was a first. Being on LA time, I couldn't get up this morning, but once I did, I had to contend with unpacking. Mattie and I shared closets, and therefore, to unpack, means spending time in Mattie's room. The clutter in his room and closets are overwhelming to me. I live in a catch 22. I do not want to part or touch Mattie's things, but on the other hand, I live in chaos. I joked with Peter and my parents today, about being able to get my clothes out of the closet, but getting them back in, was a feat. Which is why I probably did not want to take on this venture at 11:30pm yesterday!

Peter and I went out for an early dinner. I preferred to get out and be able to chat with Peter without worrying about cooking and cleaning. When we got to Mattie's favorite restaurant, we bumped into our friends Mary and Mike, and their two girls. Their girls (Abby and Emily) went to the same preschool as Mattie's. Just like Mattie, Abby and Emily were outside the restaurant, sitting by the pond, and feeding the beautiful Koi fish. It was a glorious weather day today, and after a week of rain and grey weather in Los Angeles, seeing the sun was special. Mary's daugher, Emily, has always had a special connection with Peter. In fact, when they would come to visit us in the hospital to drop things off for dinner, Emily always made a b-line to Peter. Today was no different!

I would like to end tonight's posting with a message from one of our favorite HEM/ONC nurses at Georgetown University Hospital. Tricia enterd our lives as Mattie's nurse, and is now our friend. She was an amazing nurse to Mattie and advocated for us on many occasions. However, in the process she also cared for Peter and I. She is a lady we hold near and dear to our hearts. Tricia wrote, "I was so happy to read the blog and hear of your trip out west to see your parents and thoroughly enjoyed all of the fabulous sightings that you shared on the blog. Yes, knowing Mattie, he was right there alongside you both to marvel at them all. I also couldn't agree with Mrs. Fischer more. The blog is a gift you give to all of us that has had invaluable lessons of life and LOVE that teach all of us what is truly important in life. I know that one of the greatest gifts that I have received in my life, next to my family, is your friendship and having had the priviledge to be Mattie's nurse. Mattie surely was very well versed in making every day count and living life to the fullest, he learned to do that through both of you, though his time here was way too short, his memory and mark on us all will be forever. I wanted to convey how I feel about you both and to thank you for continuing  to share your daily life with us and for your thoughtful messages that provoke a re-awakening of many feelings inside of me and keep me aware of the need to re-evaluate myself and the meaning of my own life. Sending loving thoughts your way."