Saturday, April 13, 2013

Saturday, April 13, 2013

Tonight's picture was taken in April of 2009. Peter and I took Mattie out for a walk near the mall in Washington, DC. Peter snapped this photo of us, and it has to be one of my favorites he took of us. As spring is now upon us in the city, it always amazes us that we are living through another season, or in other words..... another season without Mattie.

Quote of the day: It's not what you say out of your mouth that determines your life, it's what you whisper to yourself that has the most power! ~ Robert T. Kiyosaki


I had a horrible night of sleep, I woke up at 2am and was not able to go back to sleep. Needless to say, I am partly a zombie today. I do recall that I dreamt last night. In my dream, I am driving a car and Peter was in the passenger seat asleep. While driving, I spotted Patches walking along the side of the road. I brought my window down and screamed out "Bean." Which was my nickname for Patches. With that she stopped in her tracks and looked at me. I recalled stopping the car and opening up the door of the car to let her in. The last thing I remember before waking up was I was talking to Patches and I told her that Peter was going to be very surprised and happy to see her.

We had a busy day today. Peter spent HOURS cleaning out our deck which was an absolute mess. A mess from bird seed shells and birds, which we feed over the winter. While poor Peter was cleaning, I met up with my friend Carolyn and her two children. We do our annual trip to the Christmas Tree Shop together in Waldorf, MD. This pilgrimage is vital because it helps to provide fillers and baskets for our Foundation's raffle. Carolyn's daughter went to preschool with Mattie, so literally I have watched her grow from age 3! I always enjoy my time on this outing and I love to see what excites the kids and to see what items they select and like. They even introduced me to their hamsters today, and I got to hold them. A first for me!

I am signing off for the day, but we had a very productive shopping spree. As I tell Carolyn (our Foundation Raffle Chair) all the time, she is one of the people I couldn't do without when planning the Walk. I not only appreciate her help, but also the energy, enthusiasm, and dedication she brings to her role.
 

Friday, April 12, 2013

Friday, April 12, 2013

Tonight's picture was taken in April of 2009. Dr. Gonzalez, one of the HEM/ONC doctors in the Georgetown practice, came by on her rounds to see Mattie and to chat with us. As you can see, Mattie had her pager out and was learning how to use it! This particular doctor got Mattie. She just understood his personality, his liveliness, his need for questions and inquisitiveness, and she also understood how to work around his moods. Most likely because they are both emotional beasts. Like myself. We all speak the same language. One thing I will always respect about this doctor is her understanding that Mattie was in pain. She read the signs well and did not view his constant request for pain meds as an addiction (which others I assure you did!). At the end of the day, she and I were both right. Mattie was in intense pain, and I am so glad I did not withhold pain medication, because in Mattie's case that would have been cruel and unusual punishment!


Quote of the day: No one would have crossed the ocean if he could have gotten off the ship in the storm. ~ Charles F. Kettering


I spent the majority of my day in a professional counseling licensure board meeting. Almost six hours to be exact. We are creating regulations for a new license being implemented. A license to regulate new professionals right out of graduate school. When I tell you it has taken years to create this language, I am not kidding. In the midst of regulations, we also went through licensure applications, as well as ethical violations presented to us. Needless to say it was a FULL day!

On my drive home from the meeting, I passed this park in DC. Every time I pass this park in the spring, it makes me pause. I find it breathtaking. So at a stop light, I whipped out my camera to capture this "Spring in Air" photo. Peter and I are getting ready to have a weekend of deck cleaning to prepare our space for painting. We literally paint it every spring and then of course plant our flowers. I know my neighbors upstairs are awaiting our activity and with this change in warm weather, I am very inspired to be outside. Especially after being cooped up by a computer all week working on Foundation items. For the past couple of nights, do you want to guess what has been visiting our deck? A BAT!!! Now I have to tell you, I am NOT a fan of bats, but guess who thought they were neat!? Mattie would have loved every minute of this bat visit and my screaming. Peter of course reminds me the bat is eating bugs and mosquitos, but honestly!!!!

Thursday, April 11, 2013

Thursday, April 11, 2013

Tonight's picture was taken in April of 2009. The two women posing with Mattie were child life interns at the Hospital, Meg and Laura. What I also love about this photo is the up close and personal view of the activity of "George." George was the name of Mattie's left leg. This is the name Mattie's orthopedic surgeon selected for Mattie's left leg. I always said that George was the perfect name for this leg, since it was very curious and up to trouble, not unlike Curious George (the children's book character). Since Mattie's other three limbs were operated on, the left leg (the only non-cancerous limb) was used like an arm and hand. Mattie had more of an opportunity to work with Meg than with Laura. I admit that Mattie was challenging and if he felt you didn't get him, he could make your life very difficult. I remember first meeting Meg in clinic. She was brand new to the Hospital, and I admit I didn't always accept change well. Especially after losing two of Mattie's favorite child life interns, Whitney and Lesley (their internship finished which happens, but of course we remained at the hospital). However, two things that captured me about Meg are her energy and spirit. She was actually the perfect match for Mattie. She could give out as good as he could dish out. I truly felt if an intern could learn to work with Mattie, then that person was cut out for the challenges of that profession. Meg proved herself very worthy.


Quote of the day: Time is a game played beautifully by children. ~ Heraclitus

The major news today is our Foundation Walk website was launched and has gone live. We are already receiving individual and group registrations which is lovely! Peter and I were working out kinks in the system all day, but I think tonight, we can take that stress off our plate.

I had the opportunity to meet up with my freshman college roommate today. Leslie lives in Maryland and her daughter, Faye, has been working closely with the Foundation this year. Faye helped us with our April item drive and today I picked up all of her efforts! It is wonderful to see such a young person activate and want to participate in our mission!

It is ironic, Leslie and I had a lot of friends in college. We basically hung out with the same people. However, most of these individuals we have lost track of, which doesn't seem possible. We felt so close to these friends at one time, but as I say often, no matter how close you are to someone, if the relationship isn't nurtured.... it will die. I think it speaks volumes that Leslie and I have stayed connected all these years and it means a great deal to me that she and her entire family support the work that Peter and I do. When Leslie was in college she lived in Vermont. I went to visit her home several times, and on one occasion she took a few of us to Ben and Jerry's ice cream factory. That maybe where my admiration started for the Holstein cow and ice cream. One can never under estimate how a connection with a friend can change one's life and perspective.

This afternoon when I got home, I received an email from Donna, one of the kindergarten teachers at Mattie's school. The title of the email was "Transformation!" She wanted me to know and to see how her classroom has been transformed due to the Picasso art work the kids created yesterday. I was very touched by this photo and also Donna's acknowledgement of how I connected with the children!

Wednesday, April 10, 2013

Wednesday, April 10, 2013


Tonight's picture was taken in April of 2009. Mattie was going through a pasta stage when this photo was taken, which meant that Mattie wanted all sorts of different pastas to try. Bringing Mattie just one pasta choice was never a good idea because chances were he wouldn't like it. If we got him a variety, the probability he would nibble on one of them was much higher. I will never forget one night, like at 11pm or midnight, Mattie desperately wanted pasta. I had Peter driving around town looking for this and he understood clearly he couldn't come back into the hospital room without something! It is a sad commentary that a hospital kitchen isn't open around the clock to handle the needs of patients. But in all reality, even when the kitchen was open, Mattie wouldn't eat a solitary thing brought up on his tray! What I love about this photo was the line up of Lightning McQueen cars Mattie had on the lid of his food container. Cars and things with wheels were never far from Mattie's little hands. For the longest time, I must have carried Hot Wheels cars in my purse, which could entertain and engage Mattie at a moment's notice.

Quote of the day: The love we give away is the only love we keep. ~ Elbert Hubbard

I spent three and a half hours today at Mattie's school. Today was the first art session, in my series of three, that I hold within one of the kindergarten classrooms. Back in 2011, Donna (one of the kindergarten teachers), invited me into her classroom after school for tea. Though Donna wasn't Mattie's teacher, she knew of him, since Mattie's classroom and hers did many activities together.

So in 2011, when I had tea with Donna she wanted to brainstorm a way to get me into her classroom and interacting with kids. I suspect Donna knew I liked these activities after talking with Leslie (Mattie's teacher). When Mattie was in Leslie's classroom, I came up with all sorts of fun and hands on activities to do with the kids. But I suppose it is the educator in me, I don't only convey information, I want there to be a hands on component, and then I always end each session with a homemade snack that reflects the content we are talking about.

When we met for tea in 2011, Donna mentioned to me that she read her class the kid's book, When Pigasso met Mootisse. It was the mention of this book that inspired my three session art series, and in fact this is my third year teaching this series. In 2011, since it was my first time presenting on both Picasso and Matisse, I had a steep learning curve. I took out about 20 books from the library and on my own developed a curriculum that I thought would be appropriate for 5 and 6 year olds. Keep in mind this is not the developmental age group I am trained to teach. But as I developed this curriculum, I had Mattie in mind. I reflected on his attention span and what captured his attention. So far, from year to year, my experience with Mattie hasn't steered me wrong.

I know some may think that going back to Mattie's school and interacting with Mattie's age group (after all, I only experienced kindergarten with Mattie, he never returned to school once diagnosed with cancer) would be difficult for me. But in many ways, Donna is giving me a gift. She is giving me the opportunity to spend time in a space once touched by Mattie. In addition, when interacting with her students, I can't help but think of Mattie and wonder what he would have thought of this art series.

When I arrived at Mattie's school today, I snapped a few pictures by Mattie's tree. Peter planted bulbs around the tree about two months ago. The bulbs are in full glory this week and I wanted to share this sight with Peter. What I found very touching is someone at the school surrounded our flowers with cedar chips. The chips provide almost a demarcation for the children, so they know not to step on the flowers.

While outside with Mattie's tree, I was visited by this beautiful cardinal. He was singing and looking right at me. The cardinal was Mattie's favorite bird and a part of me took this as a sign from nature that Mattie was with me as I was walking into his school building this morning.

 

 

 

 

 

 

Though the students I am teaching are only 5 or 6 years old, I still present to them using PowerPoint presentations. In each session, I share photos of the artists themselves, discuss each of the artist's life, their passion for art, and also provide many visual examples of paintings by each artist. We dialogue about the paintings, I try to capture the feelings that the art evokes in the students and of course also get them to understand a little something about the techniques these artists employed which brought about their fame. Today's hands on assignment required the class to work in four groups. That may sound easy, but team work and cooperation are challenging skills at age 5. Yet each year, with guidance, direction, and support, the teams do a great job with each other. This is one of the paintings created today. I basically give the students a canvas that has an outline of something traced upon it. The students have to work as teams to fill in the shapes. After they create their creation, I have them compare theirs to the actual Picasso painting. The painting which I base my traced outline on.

 

 

This particular group fell in love with painting. Though it may not look like the other three paintings, it was done with team work, and frankly the students got to appreciate texture, the mixture of colors, and talking through the process of creating.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I think Picasso would have been pleased with the examples generated in today's classroom. The students learned that Picasso was a cubist and as such appreciated and integrated geometric shapes into his art. From my perspective, the students were trying to mimic what they learned.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This painting probably looks more true to form in comparison to Picasso's own creation. Nonetheless, each and every canvas was unique, a work of art, and was a fine example of team work. I think at age five, you can't ask for more!!!

While I was in the classroom today, Mattie's head of the lower school came in with a prospective parent. I did not hear this conversation, but Donna told me that the prospective parent thought I was an outside art educator coming into the school. Very cute, if he only knew the real story as to who I am and why I am there!

At the end of my time in the classroom, Donna always has the kids shake my hand and thank me. There is one little girl in the class that has already taken a liking to me and while we were sitting at circle time, she was rubbing her face against my leg. It was very cute and it reminded me exactly of Mattie.

 

 

Tuesday, April 9, 2013

Tuesday, April 9, 2013 -- Mattie died 187 weeks ago today.

Tonight's picture was taken in April of 2009. I typically do not post photos like this, but unfortunately there were many, many moments like this in Mattie's care. I do not even remember Peter taking this photo but clearly he captured one of our depressing, sad, and difficult times at home. In times like this, despite how impaired Mattie was, when upset, he found a way into my lap. As time goes by, I try to cling to and remember what it felt like to hold and hug Mattie. It does require a lot of thinking and reflecting because the mind has a way of playing tricks on you.


Quote of the day: If a man will begin with certainties, he shall end in doubts; but if he will be content to begin with doubts, he shall end in certainties. ~ Francis Bacon


I started my day with going back to zumba. It is a good way for me to get up, out of our home, and engaged with others. The irony is I know my dance teacher way before I started zumba. She was actually one of the room parents in Mattie's kindergarten classroom. It is a small world and I appreciate her support in many ways. I enjoy her class and how she incorporates dance and movement into our exercises, but she also supports our Foundation. Last year Jenny came up with the idea of doing a zumba session at the walk, and this year, I was specifically asked to bring zumba back. I had no idea the level of attention it caused in those in attendance. Apparently it is a good spectator event, which is always a good thing to have to build community spirit and camaraderie in a crowd. Though my hope is more people will try zumba this year, because when you can put aside being self conscious, it really is great exercise that is fun.

After class, I headed over to Mattie's school, where the walk will be held on May 19. I had a logistics meeting and my friend Tina met me there so we could walk through our new addition this year..... kid bands. Peter and I were advised to incorporate live music into this year's event and when Tina heard this, she suggested using kids and teens versus adult musicians. In a way, it is kids helping to raise awareness and funds for childhood cancer. Which is a very valuable and inspirational notion! In just a few short weeks, I have been amazed with what Tina has pulled off and who she has connected the Foundation with to play at our event. Today, Tina introduced me to JP. JP is one of the founders of ROAM (Rock of Ages Music; http://www.roamrockandroll.com/joomla/) in Alexandria, VA. JP is a musician himself and he trains local children and teens on band instruments. Several kid bands operate out of his school.

Keep in mind that JP doesn't know me from Adam. Tina shared with him our story, our mission, and discussed with him the nature of our event. JP couldn't have been more accommodating today and if I listed all the things he is supplying and coordinating for us you may not believe it. When I meet people who are this giving and motivated, I literally want to sweep them up and adopt them immediately! Needless to say, I am thrilled that so many young people want to perform at our Walk.

Tina is aware of the fact that Mattie would be 11 years old now and his cohort is getting older. The idea that this cohort may now be interested in tuning into kid bands is a good one, and we are both eager to see the reaction to having the bands this year.

As tonight's quote clearly points out, coming into things with doubt does help to end things with certainty. Perhaps doubt isn't the right word. I would say I entered this whole band idea today with an open mind, I had no expectations. This is atypical for me, because I tend to approach Foundation tasks with some level of certainty or at least with an opinion. When we did a walk through of the campus today for the Walk event, I noticed at first I was closed off to ideas. But then I took a step back and really tried to absorb what Tina and JP were suggesting. I actually prefer working with people rather than calling all the shots, so today was a very refreshing day in which I felt like we gathered as a team to brainstorm in order to make this new addition to our event a success.

Monday, April 8, 2013

Monday, April 8, 2013

Tonight's picture was taken on April 4, 2009. Mattie celebrated his birthday in the hospital playroom thanks to Linda (Mattie's child life specialist) and his friends who came to the hospital after school to celebrate with Mattie. Linda is the person who introduced my family to the bakery, Georgetown Cupcake. Linda arranged to celebrate Mattie's birthday with beautiful cupcakes from this bakery. After all, I couldn't leave the hospital and get a cake. That wasn't even on my radar scope! As you can see in this picture, Mattie was being a typical kid. He had frosting all over his face and enjoyed being surrounded by friends.


Quote of the day: Remember that everyone you meet is afraid of something, loves something and has lost something. ~ H. Jackson Brown Jr.


Today was an incredible weather day in DC! In the 70's to be exact. In a way it was a total shock to the system after contending with 40 degree days for SO long. All of a sudden the trees are beginning to bud, the cherry trees are blooming, and the daffodils are in their glory. Amazing what sun and heat can do for plants and one's own body! Peter moved all our indoor plants outside for the spring/summer. When this happens, it seems like our whole first floor opens up and we acquire more space! We had windows and doors open today and we even ate dinner for the first time outside.

I had the opportunity to have tea with my friend Mary today. This was a good diversion for me for many reasons. It got me our of my home and interacting with other people. Working from home is a wonderful problem to have, yet it can also be isolating, stressful, and I am ALWAYS on. Which is why during the week, I do try to get out and see friends between working.

Later in the day, I went to pick up Patches' ashes. Everyone at the vet's office told me they missed Patches. She really was one of their favorites! In fact, a week after Patches died, the vet's office sent us a beautiful condolence card. Within the card, people shared stories about Patches and several even expressed how Patches was one of the first kitties they ever cared for. That Patches was a "good girl" and taught them well! The card was actually very touching. We were surprised that Patches' ashes came in a wooden box, but the box is completely sealed. So you can't take the ashes out easily to put them into something else. Needless to say, Patches' ashes are now sitting on our plant stand. A plant stand she used to love to sit on and bask in the sunshine during our pre-Mattie days. I am happy a part of her is with us at home, because I couldn't tolerate knowing that her ashes would be thrown away. She was too special to us for that kind of treatment.  

Sunday,March 7, 2013

Sunday, March 7, 2013

Tonight's picture was taken on April 2, 2009.  Mattie was in the child life playroom at the hospital performing magic tricks. Sitting next to Mattie was the "Magic Man." Or as my faithful readers know, Mattie's head of the lower school. Bob came to visit Mattie often in the hospital and taught Mattie one on one many different magic tricks. As Mattie got sicker and his treatments got more intense, Mattie would shut down from talking and interacting with people. Magic was an incredible outlet for Mattie. As you can see, Mattie entertained many adults with his new skills. Magic gave Mattie a purpose, a direction, and a talent that others around him didn't have. I remember this day very well because while Mattie was with Bob and entertaining Linda (Mattie's Child Life Specialist), Jenny (Mattie's Art Therapist), and Sharon (the Hem/Onc Chaplain), I was with Mattie's first oncologist. It was on that day, I gave this doctor his walking papers. This doctor was not a good match for our family and when I found out he wasn't totally forthcoming about Mattie's lung tumors, that was it! This doctor and I had so many negative interactions with each other, that when I give a talk to health care professionals about what NOT to do with patients and their families, I pull from my rich database from working with this doctor.


Quote of the day: We cannot change the cards we are dealt, just how we play the hand. ~ Randy Pausch


This weekend we were expecting one of Peter's childhood friends to be visiting us. We came back from the beach on Saturday afternoon purposefully for this visit. After I unpacked yesterday, I decided to go grocery shopping since we literally had not much in the refrigerator after being gone for 10 days. I headed to the grocery store that I always shopped at with Mattie. I hadn't been in that store in a LONG time. Yet because I shopped in it each week with Mattie, I still knew where everything was located aisle by aisle.

Grocery stores are so clever as they feature toys and other items that attract the eyes and imaginations of children. Mattie and I never seemed to leave the store without something for him. Even if it were a small rubber ball. I remember being so frustrated with Mattie at times while grocery shopping, because of his insistence on getting something for himself. I tried rationalizing why we were shopping, that he had enough rubber balls and other things, and that we weren't toy shopping. Some shopping visits I was successful and others not so much. Now as I was walking through Safeway yesterday I reflected on these silly and ridiculous battles we had with each other. In the grand scheme of things it probably did not matter that he wanted a "prize" with each visit, but it did when I approached parenting from a typical developmental framework (a non-cancer lens). I did not want Mattie to become selfish, spoiled, and demanding. However, as a parent who experienced childhood cancer and then lost Mattie to cancer, I realize some of the pressures I put upon myself (which I imagine all parents do) while parenting a healthy child were skewed. Cancer changed my perspective on life, parenting, and priorities. Now I look at those little prizes that Mattie brought home with a smile because I realize these rubber balls made him happy, he loved his collections, and I have no regrets. I always tried to balance Mattie's desires with reason. Which was the only way to parent Mattie!

It is funny how a trip to the grocery store can evoke all sorts of feelings even three years later. With Mattie in tow, we became friends with all the baggers, the deli counter folks, and the list went on. Yet I walk in the store and my life is so different now. All the store personnel have changed and no one knows me or the fact that I was a mom. Yet being in that physical space served as that reminder.