Saturday, January 7, 2012

Saturday, January 7, 2012

Tonight's picture was taken in March of 2008, four months before Mattie was diagnosed with cancer. That March, Mattie and I flew out to Los Angeles because I had a conference to attend in Hawaii. While I worked in Hawaii for four days, my parents took care of Mattie. During our stay together in Los Angeles we took Mattie to the arboretum and my mom snapped this picture of us together. I still can recall Mattie running around that day through each of the different gardens. Mattie had a profound influence on all of us because we knew he preferred being outdoors and being one with nature, so over time, we too not only planned these kinds of activities for him but we also enjoyed seeking them out.

Quote of the day: The quality of your life is the quality of your relationships. ~ Anthony Robbins

Peter kept telling me all day that the temperature was climbing and it was in the 60s. I did register what he was saying but I frankly never moved from the kitchen table for about six hours. I am sorry I missed this warm day! I was very focused today on designing a Foundation brochure that describes who we are, our mission, our activities, our accomplishments and how to contact us. For the past several months, I literally have been accumulating brochures from different organizations in order to give me some ideas for the development of the Mattie Miracle brochure. I do not believe in reinventing the wheel especially when good brochure samples are already out there. Having the samples gave me great ideas and helped us tailor our own brochure.

So between Peter and I, we developed the first draft of our brochure today, and I have to say I am pleased with its content and style. I joked with him and said, "when we work together, there is no telling what we can accomplish." Which is a good way of feeling after being quarantined for six hours straight.

The highlight of today was meeting our friends Heidi and Phil for dinner. As many of my faithful blog readers know, I met Heidi in zumba class. Heidi knew exactly who I was when I entered the classroom, because she is an avid blog reader and has been following Mattie's story for years. She knew me before I even had met her. Heidi and I have a lot in common and we both enjoy trying new restaurants and food. Though she lives in VA, she has no hesitation to come to DC to meet. I must admit I am not used to this, since I find the Washington, DC area very funny. Though we really are a tri-state area (VA, MD, DC), people tend to stick to their own neck of the woods. The ironic part about all of this is I live in DC, but am used to commuting to Alexandria. Heidi is giving me the chance to get reacquainted with the wonderful restaurants located in DC. In fact, after dinner we walked around and we were absolutely stunned to find the streets near the Verizon Center packed with people and all the lights and action reminded us of Times Square in NY.

I would like to end tonight's blog posting with an article I received today from my friend, Debbie. Debbie and I had an email exchange last week about several of my hot buttons. Two of which are over programming of children and exposing our children to all sorts of competitions rather than allowing them the opportunity to do things for the sheer fun, exercise, and socialization of the activity. In the midst of our conversation, I told her that we as a society really need to return to a simpler way of life. I love technology, but it is also the cause of great stress, anxiety, demands, and the lack of communication for us. When Debbie saw this article entitled, The Joy of Quiet, today she knew this was something I would want to read. She was absolutely correct! I see that my perspective is not far off track, after all if people are paying $2000 or more a night for PEACE and QUIET, that fact seems to speak for itself. See if you can relate...........................

http://www.nytimes.com/2012/01/01/opinion/sunday/the-joy-of-quiet.html?_r=3&pagewanted=all

Friday, January 6, 2012

Friday, January 6, 2012

Tonight's picture was taken in December of 2002, Mattie was 8 months old. Can you guess who he was looking at here? My faithful readers probably know without me even having to ask the question. In many of Mattie's pictures as a baby, you could tell whether he was looking at me or at Peter. I didn't deduce this actually, it was Peter who pointed this fact out to me. However, I must admit Peter was correct! Mattie was transfixed on me and I have been told that Mattie smiled a special smile just for me.

Quote of the day: The heart is like a garden, it can grow compassion or fear, resentment or love. What seeds will you plant there? ~ Jack Kornfield

Tonight's quote intrigues me. It seems to fall in line with my quotes of compassion and starting anew, which I posted a few days ago! However, being a realist, sometimes we must accept that life plants the seeds for you. You can't always elect to grow compassion, fear, resentment or love. Instead, I would beg to say that life plants ALL of these things in our lives, and what we CAN control is what we wish to cultivate and nurture. I will give you an example.

Having your child diagnosed with cancer maybe one of the most horrific things you can tell a parent. As bad as that is, and that is BAD, hearing that there is nothing left that can be done and your child will die, it simply devastating. I am very aware of the fact that there are other forms of devastation that human beings face on a daily basis, and I have never claimed to have corned the market on pain. But from my own perspective (which is what this blog journals) this has and continues to be my form of devastation. So reflecting back on the quote, it was life NOT me that planted cancer, cancer treatment, and the death of Mattie upon me. But what am I going to do with these horrific "seeds?!" I could check out on life, make other people as miserable as I feel, or simply hold accountable the medical and pharmaceutical professions for being inadequate, limited, and ineffective. However, I don't! Instead, I live with these seeds of destruction and instead of growing bitterness, fear, hostility, anger, and disgust (which is what can sprout from cancer), I try to grow the opposite of what the seeds can produce. None of us can control the seeds planted in our garden, but I am QUITE sure we all have control and should be empowered to assess our seeds and determine which we want to weed out and which must be watered, fed, and maintained within our heart.

I had the wonderful opportunity today to have lunch with my friends Denise and Marisa. Denise and I are both graduates of the George Washington University and her daughter Marisa was instrumental in helping me with Mattie in the summer of 2009. Marisa never knew Mattie when he was well, so she was at a disadvantage, yet she never skipped a beat and was able to handle the challenges of playing with a seven year old with cancer. Marisa is also the young lady who has run our Walk bake sale three years in a row. This year will be her fourth year with us. Marisa just got back from a term abroad to Florence and we had a wonderful time at lunch reliving her adventures and experiences. She even brought me back my own bottle of olive oil from Italy! It is very clear that travel maybe one of life's greatest educators and I am so happy to have seen this growth in Marisa.

That was the highlight of my day. However, it was a busy day and I find that tonight I am not feeling well. Between Peter and my doctor, they are working on getting me back to feeling better soon.

I would like to end tonight's posting with a beautiful and meaningful message I received today from Liz. I have never met Liz, we have only traded emails with each other. However, we are connected by mutual friends. I was deeply honored to receive Liz' message because what she is telling me in essence is I am like Anna. Liz wrote, "I’m an avid blog reader, and at some point last year we exchanged a few emails. I never got to meet Mattie, but I know of your blog through mutual school acquaintances and teachers. I wanted to pass along a blog post I recently read. This paragraph below stood out to me. I don’t know the woman who writes this blog, but I was drawn in by this post. It really captured everything I have been feeling over the years as I have read your blog. Your openness and willingness to share has meant so much to me as I’m sure it has to so many of your readers. Your point of view is so very important and I’m hopeful that many others will be able to see it one day. Thanks again for keeping up the blog and continuing to communicate with your readers. I for one am incredibly appreciative."

“At the start of 2011, I definitely would have told you that family is everything.

But a few weeks ago I sat with my friend Anna, who lost her Jack this year. She is suffering through excruciating pain that I’m afraid might just morph and never ease. But listen- when I looked at Anna- I was not looking at a woman with nothing. And it wasn’t just because she has Tim and Margaret left on this side. What I mean is that I was in the presence of a woman who has the entire world in her hands.

Anna is a woman who has power to heal -herself and others. Because Anna has choices. She could curse God and die, and we would all understand. But she doesn’t. She’s alive. Anna’s decision to write, to stay open, to invite us in when she’s most vulnerable, to get out of bed each morning, to keep choosing hope and love and life and to face the horrifically painful truth instead of hiding – her determination that THERE WILL STILL BE JOY, DAMN IT – these choices are healing and awakening her family, friends and readers. A teeny, teeny bit at a time. And since the worst has already happened, Anna is a woman who, at the moment, is loving and living without fear. And that is something.”

Thursday, January 5, 2012

Thursday, January 5, 2012

Tonight's picture was taken in April of 2007, at Mattie's fifth birthday party! Mattie's party was held at the National Zoo and it was a day to remember. Why? Because it was pouring, not just drizzling or slightly raining! It was like a deluge, with flooding everywhere. The zoo's policy however is that parties go on rain or shine. Needless to say the kids got a tour of the zoo (outside) and we all got soaked to the bone. Umbrellas weren't cutting it! What I thought was horrific, the kids thought was an adventure and special. Since it was pouring there were NO other visitors at the zoo, so in a way, it was like a private tour for Mattie's birthday. In addition we were all in amazement to see how many animals were out in the rain and on display. My standing joke about the National Zoo is you go to the zoo to see the animals, and many of them are usually hiding and you land up seeing nothing. But that day, the animals were all out and about and putting on a good show.

Quote of the day: With each sunrise, we start anew. ~ Anonymous


With each sunrise, we start anew! What a beautiful and deeply meaningful quote. I find this just as stirring as "one day at a time." Both sayings are very simple and yet in their simplicity they inspire great hope. Why? Because one day may be difficult, horrific, and challenging and yet that day can be put to bed, and when we rise the next day there is the possibility that we can feel differently or in essence start anew. Anyone who has ever battled depression or grief for example understands this philosophy quite well, and many days it is our mantra going through our heads. It is a mantra that keeps us intact and with some sort of direction and hope for a tomorrow.

I know when Mattie was battling cancer I went from being a future oriented person to a person who could only live in the present. In many ways, that aspect of my life hasn't changed even though Mattie has died. I no longer think about the future, make plans for the future, or at times look forward to it. When in mental pain and anguish it takes as much energy as one can muster to make it through a single day. When you feel this dejected and burdened it is impossible, if not inhumane, to think of living a lifetime feeling this way. Which is why I believe the brain adapts and helps us move from a future orientation to processing life one day at a time.

Today was my friend Alison's birthday. Alison was instrumental to Team Mattie and though our sons were in kindergarten together, it was in Mattie's illness that I really got to know her. Ann and I visited with Alison at her house and then went out to lunch together. Though we did not discuss this, when the three of us are together I can't help but remember our times together in the hospital brainstorming next steps or ways to support Mattie. It is a dynamic that I most likely will never forget, mainly because my son connected the three of us together. Together we talked about life and death issues and tried to navigate through one of life's most horrific moments. It is at times hard to move passed that connection and realize that the unifying force is gone from our lives. Mattie is gone, but in many ways, his spirit lives on through these connections. In the mood I was in yesterday, I probably wouldn't have deduced this or have been able to put any sort of positive spin on this, but each day is a new day, and with each new day sometimes I gain perspective.

Wednesday, January 4, 2012

Wednesday, January 4, 2012

Tonight's picture was taken in December of 2006. We took Mattie to Boston to celebrate Christmas with Peter's parents. Behind their house are part of the Middlesex Fells Reservation. 'Fells' is the Saxon word for rocky, hilly tracts of land - an apt name for this scenic area which is rich in local history. Peter spent a good part of his childhood playing and navigating in these Fells and I know he enjoyed introducing them to Mattie. This picture captures two generations of Brown boys enjoying these woods! 

Quote of the day: We can never judge the lives of others, because each person knows only their own pain and renunciation. It's one thing to feel that you are on the right path, but it's another to think that yours is the only path. ~ Paulo Coelho


My friend Tina sent me tonight's quote. To me this quote needs to go hand in hand with the quote I posted on Monday about compassion. When we live a compassionate life (which I KNOW is not always easy to do), then criticism, judgment of others, and the authority of knowing the "right path" seems to melt away. Because in reality there is NO right path. There may be the conventional path, or the path most popular and easily understood and accepted, but that doesn't necessarily make it right or the best. The challenge of life is finding the confidence and courage to navigate your own path. Life is ever changing and throws all sorts of curve balls your way, being fluid, flexible, and introspective are therefore a necessity. In all reality no one can carve out a path and follow it throughout one's life. You can't, because you do not live in a vacuum. Life isn't always organized, nice, or predictable despite our best attempts. Perhaps I learned this lesson the hard way through Mattie's cancer. Frankly I do not feel I needed to experience childhood cancer to develop compassion, to understand that we all suffer our own pains (both visible and invisible), and the importance of being open to alternative paths. But now that I have survived Mattie's battle and live with his death, I not only relate to this quote, but it is a part of me. It is how I try to live my life.

There are some days when writing for me is super easy and other days when I sit by the computer and feel stuck. I am dealing with the latter today, so therefore, I will be closing now and as always appreciate you visiting Mattie's blog and reading about our journey.

Tuesday, January 3, 2012

Tuesday, January 3, 2012 -- Mattie died 121 weeks ago today.

Tonight's picture was taken in December of 2004. Mattie was two and a half years old and learning to interact with Patches. He certainly gave her a run for her money. Early on Mattie would try to pull on her tail as well as pull out her fur. Despite this treatment, Patches NEVER bit, scratched at, or hissed at Mattie. I can assure you if I or Peter did this to her, we would have experienced her wrath. But she somehow understood that Mattie was different and tolerated him. A smart cat, because the consequences wouldn't have been good for her if she hurt Mattie. Over time, Mattie learned how to pet and care for Patches and they were good buddies. In fact, when Mattie came home between his cancer treatments, she always stayed close to him (before she was permanently placed at the vet for over a year) and usually sat with him on his bed.

Quote of the day: When I really hear someone it puts me in touch with him. It enriches my life. It is through hearing people that I have learned all that I know about individuals, about personality, about psychotherapy, and about interpersonal relationships. ~ Carl Rogers

To me, Carl Rogers was a brilliant mind. Most likely if you asked me who was one of the people I wished I met in my lifetime, my response would be Carl Rogers. He was an American psychologist who transformed the art and science of therapy. When I was in graduate school, and learned about Rogers' theory and techniques, they simply resonated with me. Because I too believe that at the core we all have the capacity for self understanding and for change. The crucial component to Rogers' form of psychotherapy was the curative relationship. That sounds simple and yet it is NOT so simple, because creating the right therapeutic environment and building a nurturing, trusting, and supportive working relationship is a fine art. Yet through this working relationship (between a counselor and client) a great deal can be learned, modeled, felt, and incorporated into one's daily life.

I have stated this before on the blog, but listening, truly listening, to someone requires great skill, discipline, concentration, and an ability to connect the content being processed. But I agree with Rogers, I can't think of a more tangible, real, and in depth way to connect with another person than by listening to his or her thoughts and feelings. In a way when someone opens up and trusts you even as a friend, this is indeed a gift. A gift that has lasting value and which can be built upon for a lifetime.

I had the opportunity to see my friend Ann today. We hadn't seen each other in three weeks, which back in 2009 and 2010, this would have been an impossibility. Those of you who went through Mattie's battle with us, must realize that in this horrific process my friendship with Ann developed and grew. Ann not only became my friend but she served as a beacon of hope during my greatest moments of despair. She signed up to help us with Mattie, but her presence did not end when he died. For over a year after his death, Ann was the person I spent EVERY day with, and in the beginning it was also every night since Peter and I moved into her house. As time continues I am slowly learning to reconnect with the world around me and support myself and naturally in the process our friendship evolves.

Later today, I went to visit Ann's mom, Mary. Ann told me that Mary asked about me OFTEN while I was gone. I am sure it was hard to understand my absence for so long! When I walked into Mary's room she was sleeping. Her eyes were closed and she looked peaceful. But I bent over her and said her name. With that her eyes opened and at first she had to register that it was me. But once she put two and two together, I received a big smile and she told me how much she missed me. Posted in Mary's room is a marvelous article about the first Dunkin' Donuts store in Quincy, MA. This store opened in 1950 and has been in the same location all these years. In fact, the store was just restored to how it looked in its hay day. This retro Dunkin' Donuts has made the news and it has touched the nostalgic hearts of those who grew up eating at that store. But the beauty of all of this is Mary worked in this Dunkin' Donuts store when she lived in Massachusetts. As I said to Mary today, she was a part of history! You must remember that I only know Mary as a person who suffers from a neurological disease. I did not know Mary when she was well, and therefore I am missing a whole part of life and history. However, today's article provided us with a wonderful way to connect to the past. Oh and just in case you are interested, Mary did confirm with me, that if you work around donuts every day, the last thing you want to eat is a donut. Makes sense to me!

Monday, January 2, 2012

Monday, January 2, 2012

Tonight's picture was taken in April of 2007. Mattie and I were standing in the boxwood gardens of the US National Arboretum. We tried to visit the Arboretum each April, around the time of Mattie's birthday. Because it was during that time of year that thousands of azaleas are in bloom. It is a breathtaking and memorable sight! However, the boxwood garden, which is right near the azaleas, is quite impressive as well. I decided to post this picture tonight, because this afternoon Peter and I went to the Arboretum, and I stood in this boxwood garden. However unlike in this picture, I was standing in the garden alone. Today's picture (posted below) seems quite symbolic of our life now without Mattie.

Quote of the day: Make no judgements where you have no compassion. ~ Anne McCaffrey

I pause tonight and reflect on this quote. My wish for all of us this year is the gift of compassion. May we be the recipients of it and may we also bestow it upon others. Compassion is a beautiful and yet challenging word. Because to develop, feel, and use compassion in one's decision making  process is hard work. Yet, when you look through the lens of compassion, I have found that it changes my viewpoint and I find that I am far less judgmental with others.

After my experience of walking on Roosevelt Island yesterday, I realized I did not want to return there today. The holiday season has caused the Island to be heavily trafficked and neither Peter nor I enjoy visiting and experiencing the Island this way. So I suggested that we take a drive to the US National Arboretum instead. I must admit I have only visited the Arboretum in the spring and summer before, so I had no idea what winter was going to hold for us. But one thing I was certain of..... that there would be NO crowds.

We had a beautiful 3 mile walk today at the Arboretum and our walk brought back many memories of Mattie. We took him to the Arboretum on numerous occasions. The beauty of the Arboretum is that it is a spectacular wide open space, filled with gardens, trails, and plenty of things to see. It was perfect for Mattie!

In the huge wide open meadow of the Arboretum you are struck by the vision of 22 Corinthian columns. These sandstone columns were among 24 that were part of the east central portico of the United States Capitol. Architect Charles Bullfinch oversaw construction of the portico using a design handed down by his predecessors. Completed in 1826, these columns provided the backdrop for presidential inaugurations from 1829 (Andrew Jackson) to 1957 (Dwight Eisenhower), and were the site of many speeches, protests, and rallies. In 1958, the columns were dismantled to make way for the east front extension of the Capitol, which is adorned with marble reproductions. In 1990, these columns were restored and placed in their new home on the grounds of the US National Arboretum.

Behind me you can see the columns in the distance. We walked to the columns and then meandered through this lovely Ellipse Meadow to the other side. On this side you find a capital, or top portion, of one of the columns. You can see the incredible detail that the stone carver incorporated into the design of these columns. Specifically you can see the acanthus leaves which comprise the design on the top portion of the columns.

This is one of the trails of the azalea walk. This is a walk we did with Mattie each spring! In fact, while walking I could picture him on this trail with us. Admirers come to the U.S. National Arboretum’s Azalea Collection every spring to witness one of Washington’s premier spring attractions. Thousands of azaleas cover the flanks of Mount Hamilton in a blaze of color. The first warm days bring out the flowers, and the slopes take on a surreal, almost luminescent glow.

Above you saw the boxwood garden picture I posted from 2007. The garden looks quite different in the winter, but it is still vibrant. What I LOVE about boxwood is that it emits a peachy fragrance. It was a special treat in the midst of winter to smell something so sweet! The smell hit me as soon as I walked into the garden today and despite being surrounded by this springy peach smell, it started to snow! A reminder that it is indeed winter. To me this picture is a striking comparison to the one above. It captures a sense of isolation and bleakness that just wasn't present in the 2007 version.

The U.S. National Arboretum’s National Boxwood Collection is one of the most complete collections of boxwood in the world. There are around 150 different species planted in this corner of the Arboretum. Some have blue-green leaves, others have leaves variegated with splashes of cream or yellow. Some are dwarf and mature at a height of less than two feet. One variety, ‘Graham Blandy,’  grows upward in a narrow column like an exclamation point in the garden. The National Boxwood Collection is enchanting in any season, but winter is a special time when the bold green foliage defies the bleakest days. 

We walked the entire azalea trail (as we did many times with Mattie), and when we got to the top, we could see the US Capitol through the trees!

Toward the end of our walk, I noticed these trees in the distance. They caught my attention! Why? Well I hate to admit it, but because the bark was the color of CHOCOLATE! To me they looked like chocolate trees! I snapped a picture of Peter with the trees and then came home and googled the scientific name of this tree. It turns out this is a Japanese Crape Myrtle. The trunk of this tree was SOLID, in fact it felt like you were knocking on metal rather than wood.

The Arboretum has a special outdoor exhibit entitled, Power Plants. The exhibit is featuring plants that can be used as alternative fuels (such as soybeans, corn, etc.).

One of the "power plants" featured was the sugar beet! Already an important sugar crop in 11 States, a sugar beet's stored sweetness could be fermented for ethanol. Which is why it is considered a cost effective fuel alternative.

It is hard to believe that Christmas and New Year's are now behind us. For me, time passed but I can't say it felt like a holiday at all. Peter returns to work tomorrow, which is always an adjustment for both of us. Especially since we have spent the past two weeks together. When we are together we both understand the sadness we live with. As we live our separate lives during the work week, we land up of course not having the camaraderie or the support we need on some emotionally difficult days. Nonetheless, ready or not, we must face 2012.

Sunday, January 1, 2012

Sunday, January 1, 2012

Tonight's picture was taken in January of 2003. As was typical of our weekends together, we usually went walking and spent time outside. This was where Mattie was most happiest. That weekend we went to Roosevelt Island and as you can see Mattie was riding on Peter's back. This was Mattie's favorite form of transportation prior to independently walking. Mattie HATED his strollers and forget the baby bjorn or any type of front carrier. There was something appealing to Mattie with being on Peter's back. Perhaps it was the height and the fact that he could see us clearly. Because with a stroller or front carrier he couldn't see us! 

Quote of the day: Joy is not in things, it is in us. ~ Richard Wagner

There is something very telling about tonight's quote. I agree with it wholeheartedly. I am guilty just as much as the next person in trying to find joy or happiness from not necessarily things but those around me. In fact it would be a lot easier to blame our lack of possessions or the insensitivities of others for our state of being. However, at the end of the day, in reality no one can provide us with joy or happiness if it does not exist within ourselves. That is a harsh realization because what it signifies is that change must start from within. Now with that said, I do firmly believe that those around us can inspire this internal change and they can also help us to experience joy and happiness when we are unable to do this for ourselves. We are social beings and do feed off of each other's thoughts, feelings, and moods. I know that my feelings are usually intense whether positive or negative, and I can QUICKLY transform someone's mood around me. However for me it goes the other way as well. I am good at absorbing other people's feelings and their concerns and worries have a way of sticking with me over time.

Peter and I had another slow day. We did get out and walked two miles around Roosevelt Island and like yesterday I did feed the ducks. The ducks always migrate my way as soon as they see a bag or even hear the rustling of a bag that I am holding. Unfortunately for us, Roosevelt Island was VERY crowded today. It seemed to be wall to wall people. I like walking on the Island when there are very few people there. For me, it is our escape within the city. There wasn't much escaping today.... there were people, children, and dogs everywhere. Ironically before having Mattie, crowds did not bother me in the least. However, once Mattie was born, and I observed and experienced his aversion to crowds, noise, and congestion, he conditioned me. In fact, when he was a baby, if I knew we were going to be in a crowd or confined somehow inside, my stress level would go up, and I would immediately start looking for alternatives to this setting, because I knew this would set Mattie off on a terrible tantrum. Though Mattie is no longer with me, somehow I am conditioned to feel stress and anxiety in these types of settings. So though I walked the Island and got fresh air, I did not enjoy it in the least.

I spent the rest of the day focused on Foundation items. Typically at this time of year I am ramping up plans for our annual May walk. However, this year, we are not only planning the Walk, but we have the Whole Foods day in January and a psychosocial symposium in March, so we shall see how well I can juggle all three events. 

As today is the first day of our new year, I hope that our readers had a good day and know that we wish you a happy, healthy, and safe 2012.