Friday, March 4, 2011

Friday, March 4, 2011

Tonight's picture was taken in November of 2003. We were visiting Peter's parents in Boston, and Peter's mom gave Mattie a gift. The gift was an animated Elmo, that sang and danced the hokey pokey. Mattie was absolutely fascinated to see this toy in motion, and I captured his face watching Elmo in several shots. This is one of my all time favorite pictures, because it is a memory for me of the sheer joy Mattie felt when seeing this fuzzy red Sesame Street character dancing and moving about. Mattie loved it so much, that he too would rise to his feet and do the hokey pokey right along side Elmo. It was a priceless scene. Elmo can still be found in Mattie's room today, and each time I see this toy, I am transported back to the moment in time seen in this picture.

Quote of the day: Sometimes, when one person is missing, the whole world seems depopulated. ~ Alphonse de Lamartine


Today was another busy day. I started the day at the doctor's office for my annual physical. I am fortunate to have a doctor I can talk to, and who actually listens. She spends a great deal of time with me, and she understands on some level the physical toll Mattie's illness and death have taken on me. In many ways, my doctor reminds me of Kristen, Mattie's oncologist. They are both young, bright, people oriented, and good listeners. I have learned from Mattie's battle that I will not tolerate being treated as inferior or an after thought by any medical doctor, especially a doctor treating me.
 
After my doctor's visit, I then met up with Ann, Mary (Ann's mom), and Ann's cousins (who are visiting from Boston). Mary loves to window shop and go into the Hallmark store. So we traveled as a pack from one place to the other, and eventually landed up having lunch altogether.
 
Peter and I had the opportunity this afternoon to have a two hour conference call with two clinical psychologists who are pioneers in the field of psychosocial support for children with cancer and their families. Since this is our ultimate mission of the Mattie Miracle Cancer Foundation, Peter and I felt it was crucial to reach out to subject matter experts to get their input and guidance. We were also fortunate to have Brett Thompson on the call with us. As many of my faithful readers know, Brett is a managing director at Mercury (a high stakes public strategy firm) who has graciously taken us on as clients to help our Foundation develop a legislative agenda. Peter and I truly value Brett's expertise and I personally love his straight forward approach to things, his insights that he brings to the table, his honesty, and his incredible sensitivity to our cancer battle and loss. 
 
After the call was over, Peter and I actually felt very good. We both concluded that after talking to the subject matter experts, we have the right focus for the Foundation. A focus you will be hearing more and more about within the next couple of months.
 
I ended my day back with Mary. I sat with her this evening, helped her with dinner, and we chatted about her day. It is funny in a way, Mary and I understand each other's sadness. We do not have to actually speak about it (the death of our sons) at times, but we both know it is there and it will always be there.

Thursday, March 3, 2011

Thursday, March 3, 2011

Tonight's picture was taken in November of 2003. Peter and I were in Boston and we were visiting that afternoon with my friend Jen (who I went to graduate school with) and one of her daughters, Caroline. Caroline and Mattie were around the same age. The cute part about this was Mattie and Caroline instantly took to each other. They both had energy, a lot of life to them, and they knew what they wanted. Typically Mattie did NOT like going into a pit filled with balls. He did not like the feeling, but he saw Caroline go in and she enjoyed it, so I think that inspired him. He did not last in there long, but it was long enough for me to snap a picture!

Quote of the day: Heavy hearts, like heavy clouds in the sky, are best relieved by the letting of a little water.  ~ Antoine Rivarol



Today was another day in which I focused solely on Foundation items and connections. Peter and I had the opportunity to have lunch together with a former colleague of Peter's. Bill and Peter met each other at Andersen Business Consulting. Andersen was one of the top five business consulting companies in the US at one time, and the beauty of Andersen was it attracted talented, amazing, invested, and committed individuals. It was one of the finer examples of corporate America, most likely because there was a close and familial type of camaraderie amongst the management and their employees. Though Enron severed this wonderful company, the people who worked for Andersen remain connected with each other, despite being dispersed in various industries now.

I am happy that I was able to attend today's lunch, because I got to know Bill much better. Bill is the CEO for Network for Good. Network for Good's mission statement is quite creative and inspires you to want to reach out and help a cause. It states......."Imagine what the world would be like if every time you were inspired to help someone or something, you could -- with just a few clicks of a mouse, anywhere online. That’s the mission of Network for Good. We make it as easy to donate and volunteer online as it is to shop online, and we make it simple and affordable for all nonprofits, of any size, to recruit donors and volunteers via the Internet."


Network for Good helps our Foundation manage our on-line communications and fundraising quite effectively. We are very grateful to have this connection with Bill and appreciated his time today as we brainstormed other on-line methods of connecting to our target audience. I enjoyed brainstorming with Bill and hearing his ideas, and I also enjoyed learning more about him. I am always very appreciative when the person before me is sensitive, open, and honest about his/her reactions to Mattie's death. Bill participated in a triathlon with the Make-A-Wish Foundation recently and the picture he wore on the back of his shirt during this physical challenge was of Mattie. He told us today that while he was swimming in the ocean or bicycling through this competition, his mantra was always..... Mattie suffered through worse than what I am enduring now. This comment, its great meaning, and incredible sensitivity captured my attention and heart. After all, Bill never met Mattie. However, he knew us, and he is a father of three children and deeply understands the magnitude of such a loss.

Bill started the lunch out by asking how we were doing. But it wasn't a perfunctory ask, it was a sincere ask, and when I responded, I could immediately tell that he was absorbing what I was saying. We all have skills of some sort, and mine has always been the ability to read people immediately. I am not a business minded person, however, I am learning the art of running a Foundation, and I feel fortunate enough to be surrounded by people like Bill who are willing to guide us along the way.

After lunch,  I spent the rest of the day at home doing chores and catching up on other Foundational paperwork. In the midst of this very busy week, I have been suffering with intense headaches again. For 8 years now, I can safely say that I have never had a headache free day. It is just the magnitude of the headache that varies from day to day. This week, the pain is very intense, and yet, having to function becomes the ultimate challenge. Especially when I intertwine these headaches with grief.

Wednesday, March 2, 2011

Wednesday, March 2, 2011

Tonight's picture was taken in November of 2003. I had bought this gadget to encourage Mattie to learn to walk. The ironic part was Mattie NEVER used it to walk, he converted the toy into something he could ride on, and would zip around the first floor of our home. This gadget made all sorts of sounds and noises when you threw a ball into the hoop in the front of it. The more noise it made the more Mattie loved it. Fortunately for me, toy noises never bothered me in the least, and if something engaged Mattie and made him happy, it usually had the same impact on me.

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 in at night. ~ Edna St Vincent Millay

Today was an extremely busy day. I drove to Georgetown University Hospital and instead of parking on campus, I parked several blocks away in the surrounding neighborhood. It forced me to walk and to be outside. Today was another glorious weather day in Washington, DC, and getting fresh air and seeing people walking about seemed like the start of spring to me.

Walking back on the Hospital campus is always challenging for me. It is like returning to the scene of a crime. A crime that went very badly. I can't help but be affected by certain sights I observe at the hospital. These sights I think will always greatly affect me, such as children in wheelchairs who are very sick and adults with worried and stressed out faces in tow. These sights will always remind me of cancer and the terrifying part of being in a hospital.

However, I had the opportunity to have lunch today with Anita, who is the nurse manager for the HEM/ONC pediatric unit at the Hospital. Anita was one of Mattie's nurses and we had a delightful lunch today and brainstormed ways for Mattie's nurses to participate in this year's Foundation Walk. After lunch, I walked back with Anita to the fifth floor of the Hospital. A floor which Mattie, Peter, and I practically lived in from 2008 to 2009. One would imagine that returning to the fifth floor would be immensely hard, after all, this is where Mattie received all of his chemotherapy, where he recovered from surgeries, where he did his physical therapy, and where he died. Yet visiting the fifth floor is not daunting and it doesn't make me upset for the most part. Oddly enough it is like returning home, especially when I am greeted by Mattie's nurses. Who always make me feel special. I saw Tricia, Miki, Laura, Debbi, and Linda today! It was like a family reunion in a way, and Tricia and I even sat in the nurses lounge for a bit and looked at her family photo album.

I have a feeling if I did not become a mental health counselor, I could have perhaps been a nurse. Nurses are the foundation of any good hospital, they are the ones working at all hours of the day, and they are the ones invested in the CARE and connections with their patients. I feel very indebted to Mattie's nurses, because they were there for us medically, emotionally, and also advocated for our needs as a family beautifully. I loved seeing these ladies again today, and yet it is bittersweet to say this, because that means that on some level I have to accept that Mattie had cancer and it was through this cancer that I met these amazing and dedicated women. On one hand I wish I never knew about pediatric cancer and Mattie was still with me, and on the other hand, through Mattie's intense suffering he showed me that there are such caring, giving, and compassionate people around me.

After my visit to the hospital, I then drove to Mattie's school in Alexandria, VA. I spent three hours at school meeting with Donna and Leslie. Both of whom are kindergarten teachers. Leslie was actually Mattie's teacher, and as a fellow graduate of the George Washington University, we always had a lot to talk about. Mattie was very familiar with Donna too, since Donna and Leslie's classes collaborated together on activities.

We sat together, had hot tea, and we chatted about all sorts of things. I reflected on the three class visits I made to Leslie's classroom when Mattie was in kindergarten. I went once to read a story entitled the Gingerbread Baby and then had the children decorate home made gingerbread men. The second visit, I shared a story with the children about one of my childhood adventures. I brought in a poster presentation, a craft project for them regarding my adventure, and also gave them homemade biscotti (since my adventure was about a trip to Italy). Our third and final visit to the classroom, was to cut open a coconut. Peter's parents sent Mattie a coconut from Florida that year with its husk on it. Peter literally used an electric saw to remove the husk and the class was in AWE. They got to see the coconut being dissected, they got to taste the water inside, taste the coconut meat, as well as sample coconut cookies which I baked. These three classroom adventures were fun and VERY memorable for me.

Planning lessons and teaching others has always been a passion of mine. I remember when I was a little girl, I would stand on a chair with a ruler and pretend to instruct a classroom in our kitchen. The only one who found me fascinating back then as an instructor was my collie, Heidi. Nonetheless, I had a great role model. My mom was a New York City mathematics teacher for many years. As a little girl, when I went with her to school, I could see how much my mom was loved and admired by her students. Her students graduated and went on to achieve wonderful things, but always kept in touch with her. Somehow this made an impression on me, but I also experienced my mom's teaching first hand. Unlike her, I was terrible in math. She would spend hours tutoring me after school. I would get frustrated, not get the concepts, and yet she never gave up. She was a brilliant teacher because she ALWAYS found a way to explain a concept to someone in just the right way so that it made sense to him/her.

In order to prepare for my conversation with Donna today, I put together a powerpoint presentation of slides on Matisse and Picasso. In addition, I presented the my ideas for three hands on activities to help solidify the content for the children. Donna truly loved many of the ideas I presented and we brainstormed all sorts of things together to make this three part series meaningful. I will be visiting the classroom starting on March 30, and will return on April 6 and 13. Though these presentations involve art, from my perspective this is NOT only about the art. It is a series to help children be able to explore feelings, emotions, verbalize thoughts, and think creatively. I was very touched by Donna's compliment, because she told me she could tell I was an educator and a mental health professional. Donna is giving me a chance to re-enter a classroom again, to interact with little ones, and to enjoy that interaction. A part of me has no idea what to expect, and I have no idea how the children will react to the art and the activities I will present. Needless to say, whatever I do, there will be a food component associated with it because I would like the children to have a snack that ties into the topic we cover during that day!

Last night, I was emailing Donna back and forth and she told me that her mother loved to paint. I happened to ask her whether she had any of her mother's pieces that she created. Donna surprised me by bringing in these two glorious paintings featured here. The first painting reminds me of Monet's waterlily series. To me this bridge over the waterlily filled pond is stunning. It seems to have movement, life, and most of all it seems so tranquil and serene. It captured my attention as soon as I saw it. Monet is my favorite impressionist and perhaps my favorite artist in general.
Donna then shared with me the picture of the hydrangeas. Being a fan of flowers this also spoke to me, and the pinks seemed so real, so vibrant, and again it captured a very peaceful moment in time. This particular painting was signed. I took note of that since I expressed to Donna my desire to have the students sign their names to all their art work they create with me. I think it is important for students to learn to take pride in their creativity and that means taking ownership of it.


What stunned me was Donna gave me the choice to take one of these paintings home with me. Having lost someone dear to me, I know how difficult it is to part with an object created by that person. So it meant a great deal to me that Donna bestowed such a personal and meaningful gift upon me. However, it gets better. I couldn't decide which painting to select, so Donna gave me both paintings. I am honored and humbled, and being a sentimentalist, I feel that Donna's mother's memory was shared with me today and in a way I am honored to be a keeper (in a small way) of that memory.

Tuesday, March 1, 2011

Tuesday, March 1, 2011 -- Mattie died 77 weeks ago today.

Tonight's picture was taken in November of 2003. This was one of Mattie's very first puzzles. Mattie absolutely loved puzzles, most likely because he understood how things worked and fit together. I recall this particular puzzle SO well and most likely if I checked under Mattie's bed (where he stored all his puzzles) I am sure I would still find it there. Legos and puzzles were Mattie's favorite things to play with, and ironically both of these things kept us busy while living in the hospital.



I received this poem, How to Help, today from my friend, Charlie. As soon as I read it, my immediate reaction was.... thank you, you get it!

How to Help -- by Beverly Walker

Please be gentle with this new person
That I was forced to become.
I need understanding and patience,
So please administer some,
I often feel myself floundering
In my daily activities now,
And some of the things that I used to do
Are harder to do somehow.
There are certain songs I can’t bear to hear
And places I cannot dwell,
Just folding laundry makes me cry;
(Shopping for groceries, as well).
If the smell of a grilled cheese sandwich
Has me suddenly weeping tears;
Please understand that he loved those for lunch
And I made them for him for years.
And don’t be afraid to mention his name.
I need that more than you know.
You are not the reason I’m hurting so much-
The loss of my son made that so.
Just offer your shoulder if I need to cry
And listen if I need to talk
This road that I’m on is SO difficult-
The hardest I ever will walk.
Maybe someday I’ll show you his pictures
And not fall apart at the seams.
Just tell me you know that I’m hurting so-
I can’t tell you how much that means.
I know that the pain will get softer
So be patient with me till it does;
I never will be the same person again,
For, I’m not the ME that I Was.


Mattie died 77 weeks ago today and yet if feels like yesterday. The poem How to Help seems quite appropriate for a Tuesday. As the poem so aptly states, I am a new person. New isn't always better however. The problem with grief, which our quick paced society doesn't always embrace or understand, is that it can't be turned on and then simply turned off. In fact, there are various aspects of my day that will make the loss of Mattie much more real, more raw, and at times leave me wondering.

For example, I was at Ann's house today, and because the sun was out and it was a decent weather day, her children played outside for a bit after school. They wanted to play basketball with their mom and she went out there and played with them. Watching them all connecting with each other was wonderful to see and at the same time difficult to see. Difficult because it seems like someone was missing in the mix, Mattie. I watched Ann's daughter hug her, and again I realized I will never be receiving another Mattie hug. So it is the simple observations that at times can be the most painful.

Prior to Ann's children coming home, I had the opportunity to spend time in Ann's garden. I am trying to pull out all the things that died from the winter, to make room for the tulips, daffodils, and crocuses I planted in October. I can already see these bulbs sprouting up and can't wait to see what these flowers will actually look like.

I spent the rest of the afternoon at home reading about Matisse and selecting photos of artwork that would be appropriate for kindergartners. Tomorrow, I have two meetings. The first is at Georgetown University Hospital to meet up with Anita, one of Mattie's nurses. Anita is going to work with us this year to coordinate a Hospital table at this year's Foundation Walk. We loved having Mattie's nurses at the Walk last year, and we welcome them back again this year. They are an important part of our family. Later in the afternoon, I am meeting Donna, one of the kindergarten teachers at Mattie's school. Donna and I have been emailing back and forth tonight about Matisse and Picasso and it turns out that I just learned that Donna and I both share a great love for the French Impressionists!
I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. As you know, Kristen writes to us each Tuesday. Kristen wrote, "As for today, I think of you fondly as I do on this Tuesday and every day and look forward to us being able to get together sometime soon...."

Monday, February 28, 2011

Monday, February 28, 2011

Tonight's picture was taken in November of 2003. Though you can not see Mattie's face, you can clearly see that he was fascinated by the squirrel on our balcony. He wasn't pounding on the window or trying to scare the squirrel away, instead, he just stood and watched this animal. Mattie was entranced in a way. I am NOT a fan of squirrels, but as you can see Mattie did not share my dislike!


Quote of the day: Suppressed grief suffocates, it rages within, and is forced to multiply its strength. ~ Ovid


I met up with Ann today to walk, talk, and get fresh air. It was in the 60s today in Washington, DC, but very rainy and stormy. However, we did escape the rain for the most part along our journey. I find that talking makes the walking go by faster. On my way to meet Ann, I was driving, and happened to look down on my dashboard. Mattie's toy lizard sits on my dashboard and was looking back at me. For some reason, at that very moment it hit me that Mattie was not in the car with me. I naturally know that Mattie isn't in the car with me on a regular basis, but today that reality seemed more vivid and more raw. Days, weeks, and months go by, but the loss of Mattie during the quiet and reflective moments of my days are still very real, can still bring me to tears, and I have a feeling this loss will always be a part of me.

I remember years ago when I was in graduate school, one of my dissertation committee members told me the trick to getting this large and seemingly overwhelming research endeavor completed. He said the key was to do something toward the project each day. This was actually great advice, because as you tackle even a small something each day, it motivates you to take on more and to have the courage and strength to continue forward to finish. Completing a dissertation certainly takes ability and skills, but it is also has a very big psychological component attached to it. Not unlike running Mattie's Foundation and upcoming Walk. Both a dissertation and the Foundation work can be exhausting, overwhelming, and can make you doubt your effectiveness. But taking one small step each day toward a goal, does wonders for me. It builds up my confidence which helps to keep me motivated and focused. Each day now, I try to do something Foundation related. Today I wrote a grant to a national corporation to fund merchandise for our upcoming Walk and also went with Ann to Alexandria to solicit a restaurant to donate goods in kind to our Walk raffle. So I have learned that I do not need to do something monumental each day, I just need to do SOMETHING.

When I got home this afternoon, I continued working on my Matisse and Picasso project for Mattie's school. I am learning about the lives of these amazing artists, and also about their conflictual relationship with each other. Both Matisse and Picasso competed artistically with the other, however, they both have admitted that their relationship inspired them to strive and to perfect their own talents. I have been spending a great deal of time locating paintings that would be appropriate for kindergartners to view, which isn't easy given the content Matisse and Picasso tended to capture. Nonetheless, it is my hope that the children connect in some way to the photos I will be showing and that in their own way they identify with the colors, techniques, and the subject matter. The beauty of art is there is NO right or wrong way to interpret what you see. Art is a personal experience and I want the children to appreciate and follow their own instincts as they react to what they see. Some may love Matisse or Picasso and others may not care for either. That is okay. To me art is about the process, the process of absorbing what you are seeing, and discussing how it makes you feel or what it makes you think about. Even "bad" art or art that you can't relate to, invokes some sort of reaction, and I think this is what is important to nurture in children. To allow them the opportunity to see, feel, think, and react. It is crucial for an adult to hear and respond to a child's artistic reactions, because it is through this self-expression that one's self identity and meaning unfold.

Sunday, February 27, 2011

Sunday, February 27, 2011

Tonight's picture was taken in November of 2003. In 2003, we first introduced Mattie to Fall festivals. He loved the hayrides, mazes, activities, and of course picking pumpkins. As you can see Mattie enjoyed playing with the pumpkins he picked. Most of his pumpkins landed up being displayed on my plant stand. However, Mattie would always take the pumpkins right off the stand in order to incorporate them into whatever we were playing. To me the brilliant color of a pumpkin always reminds me of Mattie and all the wonderful adventures we had in the fall tracking down just the right pumpkin.


Quote of the day: She was past weeping, wrapped in the ineffable solitude of grief. ~ Lady Mabell Airlie

Sometimes I think weeping would be better than being "wrapped in the ineffable solitude of grief." When one is weeping you know or can try to relate to that feeling. But in SO many ways grief is indescribable and unspeakable. It is a feeling that is ever present and it impacts how you breathe, sleep, think, feel, and thrive in the world. In fact, the world no longer looks the same to me. It is as if I went to bed one day and the next day I woke up in a foreign land. However, everyone and everything around me is the same, the only difference is ME! It is a rather unsettling feeling, and in a way surviving grief is learning to come to terms with this feeling. Learning that I am different, for I have seen things most people will never have to experience, and despite knowing I once was a mom my reality now forces me to live without Mattie in it.

Before Karen returned home today, we all went out to brunch together. We introduced Karen to a restaurant in DC she had never been to before. Somehow despite the rising temperatures today, I was still cold, and ordered hot tea. There is something that seems rather special to me when I am served tea in a teapot. I am not sure why, but I seem to associate a teapot with having time and trying to find peace and relaxation. We had a lovely brunch and it seemed like a nice way to end our visit together.

Peter and I returned home today and did some chores, worked on Foundation materials for the Walk in May, and I also began reading about Matisse and Picasso. I am meeting with Donna (one of the kindergarten teachers at Mattie's school who was and continues to be very supportive of us) on Wednesday, and am trying to pull my thoughts together for the three part series on these artistic masters. I am used to teaching young adults and adults, so presenting material to kindergartners is a new experience for me. I am trying to come up with hands on activities for each session and the beauty of Matisse and Picasso are they were SO prolific and were such contributors to 20th century art, that there is a host of topics to present to the children which will be doable. I look forward to meeting with Donna to hone on what will be of interest to her students.