Saturday, June 12, 2010

Saturday, June 12, 2010

Tonight's picture was taken in January of 2006. Mattie was in his first year of preschool at the Resurrection Children's Center. His teachers were Margaret and Lana. Margaret allowed me to come into the classroom and have the kids decorate gingerbread houses. This was a real feat, and it required help from Margaret and my mother-in-law. Margaret gave me her lovely gingerbread house baking mold to form the parts of the houses, and my mother-in-law gave me her recipe to make gingerbread as well as the recipe for royal icing, which is used to hold the pieces together. Making two houses were a labor of love, but well worth it, because the children in Mattie's room had a blast. In fact, Margaret opened up her room midway, and other classrooms came in and got a chance to add components to the houses. Featured in tonight's pictures, you will see Mattie next to his classmate, Ellie. I had the chance to spend the day with Ellie and her brother, Gavin today. Their mother is Carolyn, and many of my readers are familiar with Carolyn because she was the chair of our Walk Raffle this year. Carolyn is also my late night buddy who e-mails me and keeps me laughing with her witty sense of humor.

Left: From left to right were Lana (one of Mattie's teachers), Sara Catherine, Nancy, Ellie, Mattie, and Caley

Poem of the day: Bows for Hope by Charlie Brown

THANK YOU CHARLIE FOR THIS WONDERFUL POEM!

A young girl named Lauren

Joined by her friends

Created this project

And the love that it sends

One had the thought

And the rest, they joined in

Sold lots of bows
That you secure with a pin
And they donated the money
In the hopes of a cure
So that some other children's
Future would be secure
So a thank you to Lauren
And all of her friends
For this project of hope
And the message it sends.

An update about Peter! He arrived safely into Rwanda today around 5:30pm EST. That means he traveled for 24 hours straight! We did not have a chance to talk, since he was exhausted and went right to bed. He did let me know that the antimalarial drugs he has to take are upsetting his stomach. But this happened during his last trip too, until his body got acclimated to the medication. Thank goodness for technology, Skype and e-mail, keep us connected.

I had the opportunity to visit with Carolyn today and her two children. Carolyn's daughter, Ellie, was in Mattie's first preschool class. Carolyn is from Massachusetts, like Peter, and that created an instantaneous connection for us when we first met several years ago. I had not visited Carolyn's new house before, so it was a treat to be introduced to her charming neighborhood and beautiful house. There is something fun about walking into a house someone just bought, because it can be transformed at that point into anything you want it to be. Carolyn's children love their house and their backyard, and it was wonderful to be witnessing this joy.

I remember spending time with Ellie when she was in Mattie's class. However, it has been years since we really had the opportunity to spend time with each other, but that did not seem to matter. Carolyn's son, Gavin, is around five years old, and watching him today and hearing him talk reminded me of Mattie. He is adorable and has many of the same interests as Mattie. We took Carolyn's children with us today on a shopping adventure to the Christmas Tree Shops in Waldorf, MD. Those of you familiar with New England know that the Christmas Tree Shops has NOTHING to do with Christmas. Instead it is an amazing variety store that sells things at bargain prices. The store in Maryland is larger than anything I remember in Boston, and literally we spent two hours walking around and picking out items. Ellie and Gavin were excellent shoppers, and I commended them, because Mattie would have made it in there maybe 20 minutes at the maximum. Mattie was not a shopper at all, and would grow incredibly impatient with the process. Ellie and Gavin made the adventure fun and they really debated about what items to buy and what would be useful. I was impressed!

I told Carolyn that she introduced me to the Woodrow Wilson bridge today. Frankly in all the years I have lived in Washington, DC I can't recall going over this bridge! But it was beautiful to traverse the bridge and see sailboats in the water. I am sure Peter is reading this from Africa shaking his head. Since he most likely will tell me I have been over this bridge! But honestly I can't recall when or why!

After shopping we went out to lunch together. I told Ellie that she could pick where we go to eat because I was "flexible." She looked at me, and she said what does that mean? She thought I meant the kind of cartwheel and back flip type of flexible, so I laughed with that notion! Ellie and Gavin both brought an item they acquired at the Shops to lunch with them. I was so impressed with their ability to eat, entertain themselves, and yet participate in our conversation when appropriate. Having been a mom of a VERY active boy, I know that teaching children the art of conversation and eating peacefully at a meal are NO easy tasks. I admire the closeness Carolyn has with her children. There is a great deal of respect that they have for each other, and this feeling reminded me very much of the bond I had with Mattie. I enjoyed this adventure today, the opportunity to connect with Carolyn's family, and of course to be included in Carolyn's house transform. I included a link to the Christmas Tree Shops in Marlyand, it is definitely worth the trip!
http://www.christmastreeshops.com/maryland.html

Later this afternoon, I went to visit Mary, Ann's mom. I did not bring Mary a food treat today, but instead I brought her shampoo. She had requested a particular type of shampoo, and I found exactly what she was looking for on our shopping adventure today. I try to bring something to Mary each day, along with printed out photos that Ann sends me from her trip. This gives Mary and I things to talk about. Tonight, as Mary was helped into bed, she did not want me to leave. So I stayed with her for a while in her room. As it was getting darker, Mary wanted me to leave because she did not want me getting home in the dark. However, before leaving she told me that God loves me and he sees all the good and selfless deeds I do. It was indeed a lovely comment, and I know Mary is appreciative of my visits when Ann is out of town.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "What a lovely thing for Lauren and her friends to do. In addition to raising money they are clearly raising awareness of a terrible disease that takes our young, vibrant children from us. The pictures of the girls you posted earlier, making the bows and the description of the girls lining up outside the classroom waiting their turns to buy a bow are so impressive. I do hope they get the coverage in the press; so often what we read is negative and it would be nice to see such a wonderful effort recognized. It is very kind of you to continue to spend time with Mary and I hope that today finds her in better shape and improved spirits. I know that she would be far more upset by Ann's absence if you did not find the time to devote to her. As Nancy said this is a very big mitzvah on your part. As I practice today, I send you my energy to help you through this time that Peter is away and I remind you that you are not alone; many of us are just a call or an email away. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "I had a wish that others would be touched by your message and this dreaded disease can be obliterated within our life time. I am in awe of these middle school girls especially Lauren. She , certainly, learned the message of Pay It Forward. If you haven't seen this movie, rent it. You'll see what I mean. Congrats to all of the girls and Siri for being a marvelous teacher. Maybe the bows will be like the hoola hoop, a must have item. It is wonderful that additional students are learning about giving so that others may enjoy life as they do. This may become another way for the Foundation to spread the word. I am on my way out and hope that Peter had a good flight. Peter is a great guy. I love his sensitivity and am glad that you have one of the good ones. I, too, save important messages from my loved ones and they do bring great comfort when I need a pick me up. As you go through the day, I know that you're mind might wander to the quiet. That can be a challenge. As you planned to be with others during the days that Peter is away, I pray this may help you handle the quiet nights. I also hope that Mary has a gentle weekend. It is so unsettling for the elderly to have their routine changed. Your visit did bring some comfort although it might not have seemed as such. You know that just having a person show up is sometimes the only thing that counts. Until next time, I send you love and a hug."

Friday, June 11, 2010

Friday, June 11, 2010

Tonight's picture was taken in Mattie's PICU room. You can't see who is giving him a gift, but it is Nancy. Nancy is part of the famous Jerry and Nancy musical volunteer team at the Hospital. We met Jerry and Nancy during our VERY first hospitalization, in August of 2008. I will never forget that encounter. I was scared and in a mood, as Mattie began chemotherapy. When they entered the room I was tense, but they brought music and laughter to us that night which then started the beginning of a beautiful friendship. In this picture you can see that Nancy was handing Mattie a gift. Nancy and Jerry presented Mattie with his very own electronic keyboard. It was a very generous gift from Jerry, and Mattie loved that keyboard from the "piano man."


Poem of the day: Life Eternal by Darlene Zagata

Life is eternal, it does not end
Our Father tells us so.
Believe what he says, my friend
for he surely does know.
He created all life you see;
death is just a transition he explains.
He made life eternally
so the soul forever will remain.
The body is only the clothes we wear;
we take them off when we go home.
We won’t need them over there
for our Father gives us new ones to wear.
The new clothes last forever you see
throughout all eternity.
Once again we will all come together
to share our lives and love
in a new world even better,
the one called heaven above.


Peter is on his way to Rwanda, located in eastern-central Africa, tonight. He will be flying through Brussels and won't arrive into Rwanda until Saturday night. It will be a long day of traveling for Peter, with a six hour time difference included. I had a licensure board meeting to attend this morning, but before I left, I included a letter and a photo of Mattie in Peter's luggage. Though it is hard for me to be left at home, I imagine it is even harder to head to a completely different continent. When I got back home this afternoon, I saw that Peter left me post it notes all over the house. In various places like the dishwasher, the refrigerator, on my laptop, etc. This is a tradition with Peter. Many years ago, before Mattie was born, Peter did a lot of traveling as a consultant. In fact one of his assignments put him in Tampa, FL for over six months, while I was living in DC, working on my doctorate. When Peter would come home and visit on weekends, he would always leave me thoughtful notes in strategic places before he flew back to Florida. In fact, the pack rat that I am, I have kept many of these old post it notes. Based on all we are going through now, it was just very sweet to see these notes today all over the place. It reminded me of old times!

I want to fill you in about the Bows for Hope project that I reported about last week. As you may recall, I had the pleasure of befriending, through the internet, a family who lives in Pennsylvania whose daughter, Lauren, was diagnosed with Osteosarcoma a week after Mattie.  Lauren is in sixth grade. One of her end of school year projects was to "create something." Well Lauren did not just create something, she started a fashion trend for a social cause!  Lauren and three of her friends are designing duct tape hair ribbons, and the proceeds from the sales will go directly to the Mattie Miracle Cancer Foundation. I have been communicating back and forth with Lauren's teacher, Siri! Siri is in total support of Lauren's project and as I told her today, I am in awe of what Lauren and her students are accomplishing. In fact, I admire the passion of their entire school community who stands behind Lauren, the fact that she is a cancer survivor, and wants to help others. I told Siri, that their local media should cover this story. Why? Because here is a group of middle schoolers who have shown incredible initiative and are starting this new fashion trend at their school, and in so doing, pediatric cancer is being discussed, shared, and acknowledged. This is a fabulous way to spread awareness in a very positive and community building manner. As would be typical for most middle schoolers at this time of year, their heads are on overload and are daydreaming of summer vacation. But this group of middle schoolers is different. They aren't becoming unplugged, on the contrary they are energized with an incredible entrepreneurial spirit. Here are the last two e-mails I received from Siri:

Siri wrote, "I have to share with you how life has been at Maple Point and at my house for the past 24 hours. Yesterday I came home from work and was on a mission to help Lauren and her friends keep up w/the demand of their bows! After homework and dinner was done in my house, I went out to the local mom and pop craft store and bought one of every color of duct tape that they had. On my way home I stopped by the local drug store to pick up a package of bobby pins. Then I showed my daughter, Taylor, who is a year younger then Lauren how to make a bow . . . she is a lot like Lauren, a big heart and wanting to do anything for someone else. . .
it was Taylor's idea to do whatever she could to help! With the Flyers game on to listen to and not watch,Taylor sat down until 10pm making as many bows as she could! The story gets better. . . . . .as I walked in to school expecting a handful of kids to greet me at the school store, one 7th grader came up to me w/a bag. It was filled with about 30 bows and four rolls of duct tape that she wanted to donate to
Lauren. : ) I asked her to come up to my homeroom and give them to Lauren herself but to my surprise it was difficult to get in to my classroom, there were already 30 students of all ages greeting me in my classroom demanding that they buy a bow. : ) Later on in the day Erin, the girl that donated the bows worked for about 45 minutes during a class that students are allowed to use to complete make up work. Erin sold 1/2 of the bows in 7th grade lunch and Lauren and her friends sold thte remaining 1/2. . once again selling out!!!!! By the end of today, they had raised 125 dollars in only one day to donate to your organization. . . . . with sore fingers and sore backs from sitting, I know that as I am writing this email to you that everyone is home making bows for tomorrow!!! I am amazed at the energy that Lauren and these incredible young ladies have to work as hard as they are to make bows for hope!"

Here is a follow up e-mail from Siri today: "Today during homeroom the line was out my classroom door, as the girls were in my classroom taking care of each person one at a time, I was out in the hall managing the line and making sure that everyone had "checked in" with their homeroom teacher. Once again the girls assembled as many bows as they could and sold out to an even larger crowd then yesterday!!!!! The deposit I made for today was over 140 dollars!!!!!!! With two days left of full school days and an entire weekend to assemble bows, I can only imagine what crowds the girls will have to battle on Monday!!!!!! Many students are asking for them now in large quantities. . . . .apparently the bows are getting home and adults are wanting to buy them for coworkers and friends!!!!! We now have adults helping with crowd control during 6th and 7th grade lunches. I never thought that the feeling of being attacked by a crowd of middle school students who give me such joy!!! I will give Lauren the final amount from her fundraising efforts on Tuesday and let her tell you what the total amount will be!"

This afternoon, I had the opportunity to visit with Mary, Ann's mom. Mary was not in good spirits today at all and was very disoriented. She also seemed physically exhausted. While she was having dinner, Ann called and tried to talk to Mary, but Mary was having a hard time hearing most verbal communication today. I try to bring Mary some sort of treat each day, and today's treat was apple strudel!

When I got home this evening, I decided to clean up some of the flowers on our deck. I climbed on top of one of our little ledges as I was cutting flowers. Not realizing that Peter put a flower box on our deck, when I stepped down from the ledge, my foot got caught on the flower box and I went flying in the air, which scissors in my hand. Fortunately I did not hurt myself, but I fell on my wrist and leg and was shaken up. I was happy I wasn't hurt, because if I were, it would be very hard to get help in my complex, since I do not get a lot of foot traffic down at my end.

I would like to end tonight's posting with three messages I received today. The first message is from my friend, Charlie. Charlie wrote, "It seems yesterday was a productive day for you and that you did a good job managing all you had to accomplish so you did not run out of emotional energy. That's a really important skill to relearn. It is always amazing to me how many people read the blog who don't really know you or Mattie and yet they are very connected. You really have become the pebble in the lake with ripples spreading far beyond the origin of the blog; you've educated so many on pediatric cancer and brought them along for the ride in learning to walk with grief. As you continue your journey today, accompanied by those who you may never have met, I send you my strength to help you continue to navigate the path with grace. I hold you gently in my thoughts."
 
The second message is from Becky, the third grade teacher at Mattie's school who I told you about in yesterday's posting. The irony is Becky was writing to me last night , as I was writing about her on the blog! I am very honored and moved by the fact that Becky and her fiancé have chosen to make a donation to the Mattie Miracle Cancer Foundation in lieu of wedding favors this July! Becky wrote, "It was so nice running into you this morning in the post office. I hope you had a great rest of your day running around! The post office was supposed to be the start of a few morning errands which turned into me walking in the door tonight at 8:45! You have been on my mind all day. My fiancé was waiting in the car for me outside of the post office and as soon as I got in I said, "You'll never believe who was in line behind me! It was Mattie Brown's mom!" I told him all about our conversation, but I paused after that. He knew exactly who you were without any other detail on my part. I didn't say, Mrs. Brown or Vicki Brown or a parent at SSSAS (he is also a teacher there), but he knew you as Mattie's mom, which is what you will always be! I retrieved your email address from my draft email box and I read over the few emails I had written expressing my thoughts and prayers and love to you and your family as far back as last April 2009. As I read over them, the same sentiments have held true throughout the past year. I try and read your blog daily and am always sending thoughts your way. Whenever I see a butterfly or an acorn on the ground, or over the past few weeks when I walk by Mattie's tree on the SSSAS lower school campus, I send a loving thought your way. The tree dedication ceremony was lovely a few weeks ago. It was so special to have so many people and students there honoring Mattie in that way. The ceremony made me smile as about three months ago now I sat down with the organist for my wedding and told her that the music didn't matter all that much just as long as the hymn we sang during the wedding ceremony was "All Things Bright and Beautiful." Then to hear everyone join in outside by the tree made me know I made the right choice. Throughout the wedding process, Chris and I have made a ton of decisions regarding different things, but one thing we chose from the beginning was wedding favors. Instead of doing wedding favors, he and I have chosen to donate to two causes that were near and dear to us. I wanted to let you know that one of the organizations we are donating to is the Mattie Miracle Cancer Foundation. Mom and I were just talking about it today in fact, as I am meeting with the woman who is doing our programs next week and we wanted to give a little information about it. It has truly been an honor and a pleasure getting to know you and Peter through your blog and meeting you a few times briefly over the course of the last year. I am constantly in awe of you and everything that makes up who you are. I look forward to seeing you again in the future and talking to you more."

The third message is from my friend and colleague, Nancy. Nancy wrote, "I enjoyed your comments about Becky. I taught 3rd grade for 16 or 17 years, I'm not remembering exactly. It is an awesome age, actually, it is the new 4th grade experience. Everything has been moved down as far as expectations and goals. I'm not sure all are enjoyed by the student, I know the educators have difficulty with all of the testing now. Anyway, it was meant to be that you saw Becky again today. What a mitzvah! You know in Judiasm that means a good deed. Bringing Mary ice cream and having such a lovely visit. Ann had perfect timing or you told her when Mary and you would be together. It doesn't matter, you , as is your style, were thinking of Mary and made her smile. I know how much you value this relationship too. Life is full of circles, isn't it? Remember, I am only an email or phone call away."

Thursday, June 10, 2010

Thursday, June 10, 2010

Tonight's picture was taken in March of 2008. We took Mattie on a Los Angeles Harbor cruise. In the backdrop was the Queen Mary. We explained the history of this impressive ship to Mattie, and since Mattie liked ships it seemed only fitting to capture this moment with Mattie and the grand lady (or the Grey Ghost).


Poem of the day: Precious Son by Joy Curnutt
God, I know you gave your precious Son
To give us life with You.
But I didn’t want my son to leave,
Cause he was precious too.
We all are precious in your eyes
And all to you return.
I know my son will not come back,
And I still have much to learn.
Our time on earth is for learning,
And when our lessons are through,
Our spirit chooses the time we leave,
And we come back to you.
My precious son is with you,
And there will be a day,
That I too will leave this earthly place,
And you will light my way.
I know your arms will be open,
And I will have a smile,
To see my God and precious son,
I will then become Your child

I went to bed not feeling well and therefore had a hard night of sleep. However, I woke up better today, and focused on a bunch of chores I had to accomplish. I had many packages on behalf of the Foundation to mail today. Because I had so many, I decided to process half at one post office, half at another, and hand deliver four packages myself. While I was at a post office in Alexandria, VA., I noticed a smiling face on line who said hello to me. The person on line was a third grade teacher at Mattie's school. Her name is Becky and I recently met her in person at Mattie's tree dedication ceremony on May 24. At the ceremony, Becky introduced herself to me and told me she is an avid blog reader. In fact, when I saw her this morning, she was well aware that Ann is out of town, and Peter is headed out of town tomorrow. When Becky told me she read our blog, I was deeply touched, but today's encounter was another memorable moment. Mind you I never met Becky before and Mattie never had her as his teacher, yet she is captured by Mattie's story and the impact his cancer has had on us and the community. I admire Becky's sensitivity, true concern, and empathy. All I can think of is if this is how Becky treats a family she doesn't know well, I can only imagine how blessed the students in her classes feel. In a way, I am saddened that Mattie never got to the third grade, because I have a feeling Mattie and I would have both appreciated Becky's enthusiasm, insights, and sensitivity.

After running chores, I eventually made my way to see Mary, Ann's mom. I asked Shayla, Mary's caregiver earlier in the day if Mary wanted some sort of tasty treat for the afternoon. Shayla and I both determined that Mary would like ice cream. When I arrived at her assisted living facility, one of the caregivers told me that Mary was lonely and was awaiting my arrival. Mary was thrilled to see the ice cream, and though she told me not to bring her anything, I could tell she enjoyed being thought of in this way. While I was chatting with Mary, my phone made a noise. It makes this noise when someone sends me a picture. So I grabbed the phone, and I could see Ann was sending me pictures of her children on the beach in San Diego. So I showed them to Mary, and this gave us a lot to talk about. We kept messaging Ann back and forth, and finally I think she decided it probably would be easier just to call us. So Mary and I talked to Ann today for about ten minutes and Mary listened carefully and took in all the details. Mary enjoys a good conversation, and this stimulation is very good for her.
I would like to share some more pictures from the Mattie Miracle Cancer Foundation Walk with you tonight. These photos celebrate our connections with the Georgetown University Hospital!

In this picture, Katherine and Katie (both fabulous HEM/ONC nurses) were setting up a photo display of Mattie. The photos depicted what at typical day looked like for a pediatric cancer patient at the Hospital.

 

Left: Katherine and several childlife volunteers set up art work that was on display at the Walk. This art work was created by several pediatric patients at the Hospital.

Left: Mattie's buddy, Campbell, with his parents checking out the art work.

Left: Robbie (one of Mattie's favorite childlife volunteers) was helping children at the model magic childlife table at the Walk.

Left: A close up of the activity at the model magic table.

Left: Pictured from left to right are Peter, Mary (head social worker at the Pediatric Lombardi Clinic), Dr. Aziza Shad (Director of the Pediatric Lombardi Clinic), and Vicki.

Left: Robbie (a fabulous Childlife volunteer) and Megan (the director of volunteer services at the Hospital) doing laps!

Left: From left to right, Virginia (Vicki's mom), Kelly (Tricia's daughter), Nicole (Tricia's daughter), Tricia (one of Mattie's amazing HEM/ONC nurses), Vicki, Kyle (Tricia's son), and Katherine (HEM/ONC nurse educator at the Hospital).

Left: This picture features four fabulous HEM/ONC nurses! Pictured from left to right are, CR, Vicki, Tricia, Katherine, Peter, and Jenny. 

Left: Mattie's Lombardi Clinic buddy, Maya! Maya won a raffle item and was THRILLED as you can see!

Left: A trio who probably doesn't need an introduction if you are an avid blog reader. Pictured from left to right are Lesley, Brandon, and Whitney. As many of you know Brandon was Mattie's closest buddy at the Hospital, and Whitney and Lesley were Childlife interns that were simply fantastic! They understood Mattie, and their warmth and energy were radiant and always appreciated.

Left: Pictured from left to right are CR, Jim (Brandon's dad), Toni (Brandon's mom), and Jenny.

Left: Pictured from left to right are Hannah (Jocelyn's sister), Jocelyn, and Brian (Jocelyn's husband). Jocelyn is an osteosarcoma survivor, and she was a wonderful role model for Mattie. She helped him in immeasurable ways, and we are so thrilled her family could be at the Walk.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am glad you got up and did some productive things yesterday. It really can be hard and there are days in which getting up just seems to be a monumental task. I am glad you are planning to visit with Mary but that you also recognize your own limits and are reaching out to those who can support you. While the path can be navigated on one's own, it is a very difficult and often heartbreaking thing to do so having support is such a wonderful thing. All of us are here to help; just reach out and clasp a "hand" that is reaching out to you. As you walk the path over the next week, know that help is just a phone call, text or email away. I hold you gently in my thoughts."

Wednesday, June 9, 2010

Wednesday, June 9, 2010

Tonight's picture was taken in March of 2008. Mattie and I went on a trip to California to visit my parents. While there, we took Mattie to a hands on Noah's Ark exhibit at the Skirball Cultural Center. I included a link to the exhibit if you should want to see some of the fabulous and intricate details. It was well worth the trip!
http://www.travelinlocal.com/noahs-ark-exhibit-swings-at-the-skirball-cultural-center/
At the exhibit, they had an area where children could climb and explore. The irony is that Mattie was afraid of climb and hesitant to run around and even climb steps before he entered preschool. Each week, Mattie and I would work with his amazing occupational therapist, Kathie, to retrain Mattie and to help him overcome his fears of his physical space. Clearly, from this picture you see that early intervention was very successful. Mattie loved adventure, was always cautious, but as you can see he had a big smile on his face as he was running around.

Poem of the day: Counting by Charlie Brown


Another Tuesday has
Come and gone
How many more
Until I stop counting weeks
And start counting years?
Is that even possible?
I can't imagine it now.
From where I stand
Each new week remains
A hurdle to be conquered
Filled with the pain of remembering
How sad that now I have started
Counting months, the first count
Starts with nine, that number
That is supposed to be the start
Of a new life born, and not one lost
The cruelty of numbers is hard to fathom.


As always, just like everyday since Mattie died, Ann text messages me each morning. However, this morning I did not respond to her. I was tired, did not want to get up, and this mood progressed throughout the day. On those days, like today, when I don't respond to her in writing, she then proceeds to call me. She can always tell what kind of day I am having based on how many times she has to call me and leave a message until I finally decide to answer. For those of you who do not know Ann, she can be very persistent. When she finally spoke to me today she invited me out with her to go shopping and to lunch. However, I chose not to go. Instead, I finally got myself together and decided to spend the day at home so that I could make headway on some of the final Walk paperwork I wanted to do. So in that sense it was a productive day.

In the midst of wondering how on earth I would be spending the next week without Peter and Ann, I began to get e-mails and phone calls from friends. Slowly but surely, by the end of today, I practically have each day planned, so that I will be spending a portion of each day with a friend. When Ann goes out of town, I try to spend time with her mother, Mary. Mary's physical and cognitive health are declining rapidly, and when Ann goes out of town Mary's feelings are exacerbated. However, based on my own emotional state, I realize I do not have the stamina to spend the amount of time that I typically would with Mary without having the support of others in my life. So for me, planning out my week was necessary and a healthy thing. Otherwise, I could potentially spend it in isolation.

I uploaded some more Mattie Miracle Cancer Foundation Walk photos for you to look at. What I love about the next three pictures, is they illustrate that the Walk was truly an inclusive family event. Even our four legged friends were walking around the track and participating in the day! I love the fact that Jeff, our friend and photographer, captured these special guests.

 

The pictures on the left and the right to me are charming. They capture Liza, our co-coordinator of logistics with her daughter Katie, handing out beads to two little boys, Cameron and Jamie. Look at the enthusiasm and excitement on the children's faces as they earned a bead for the lap they just completed!

As the picture in the center illustrates, adults were intrigued by the beads too! Peter's colleagues, John and Bill, received their beads from Liza and Katie and were working on stringing them onto the backpack clips.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I know you hear the echo of Mattie in all the things his friends are doing now. Puzzles, preparing for camp and playing sports. It has to be very difficult and yet you handle it with grace and strength. I admire your determination to do so. I respect your decision to keep Mattie's things as the physical reality of them is still very important to have in your space. There may come a time when that is no longer true; it will be okay then to let some of them go. You will know when and you will know which are the important things you need to keep and which can be "kept" in pictures or videos instead. Until then, respect your own feelings in the matter. As you walk the path today I send you my strength to help you continue to connect with others even when the effort seems too much. I hold you gently in my thoughts."

Tuesday, June 9, 2010

Tuesday, June 9, 2010 - Mattie died 38 weeks ago today, or in other words 9 months ago!

In March of 2008, I took Mattie to California to visit my parents. While there we took Mattie to the Ronald Reagan Presidential Library in Simi Valley, California. Visiting presidential libraries are a very special treat, and I am happy that Mattie got to at least one in his lifetime. I snapped a picture of Mattie in front of a piece of the Berlin Wall that is memorialized at the Reagan Library. As many of you know in history, November 9, 2009 marked the 20th anniversary of the fall of the Berlin Wall and the advent of freedom and democracy in Eastern Europe as we know it today. Reagan was famous for saying, “General Secretary Gorbachev, if you seek peace, if you seek prosperity for the Soviet Union and Eastern Europe, if you seek liberalization: Come here to this gate! Mr. Gorbachev, open this gate! Mr. Gorbachev, tear down this wall!”

Somehow on the day that represents the 9th month of Mattie's passing, I felt that a picture of Mattie by the Berlin Wall was rather symbolic. Just as the tearing down of the wall represented a dismantling of power and steps toward freedom, by Mattie having cancer, battling cancer, and dying from cancer, he has torn down a huge wall within our community. The wall that we sometimes create in our minds, the wall that prevents and protects us from seeing, hearing, and understanding that thousands of children each year are diagnosed with cancer. A disease that affects the entire family. Mattie by this wall, represents in my mind, the catalyst for change.

Poem of the day: Reunited With You


Do not believe that I'm dead and gone
I want you to know that in spirit I live on
Never weep when you gaze at that one empty chair
Don't you know that quite often I come and sit there
I still know when you're ill
Or when you have a bad day
I am only a whisper or a heartbeat away
For I still walk where you walk
I still hold your hand
My footprints aren't there when you walk through the sand
But my voice can be heard in the sound of the sea
Or in a child's laughter when it's bounced on your knee
You can hear me when a cool breeze rustles through flowers
Or in the tree tops that bend with the first evening showers
I whisper to you in the still of the night
If you could but see me you would know I'm alright
So search with your eyes
You may glimpse me one day
As I stand there and watch little children at play
I'm the light in the window
I'm the snowflake that falls
I'm the shadow in the moonlight
I'm the nightbird that calls
My spirit lives on althought my earth time is done
I'm still part of the earth
I'm lit by the sun
So smile for me please
I don't want you to grieve
I'm well and I'm strong
I didn't really leave
When your time comes to go
The last thing you'll see
Is my smile as I whisper "You're coming to me"
For death isn't final
As you close your eyes
There's a light far more brighter than blue summer skies
I'll lead you towards it
Our loved ones are there
Laughing and strong
Free of all earthly care
I've been patiently waiting for you to pass through
For death simply means "Reunited with you"

Today was a busy day at Ann's house. For the first part of the day, I sat at Ann's kitchen table and did a puzzle with Abbie and Katharina. Mattie was an outstanding puzzler. In fact, he was only 7 years old, and could attack 500 piece puzzles without a problem. While I was struggling today to help the girls with their puzzle, I thought two things. First my skills were rusty, since I hadn't done a puzzle with Mattie for almost a year, and second, I thought if Mattie could see me today, he would have been laughing. Laughing because he would have had the puzzle done by the time I put together the border of the puzzle.

I had the chance to talk about summer camp with Katie and Katherina today. They showed me, with excitement, their camp schedules and even pictures of the cabins they will be staying in. It is entertaining to be around children who range in age from 8 to 12. Entertaining, because these are very different age groups and yet, somehow we have to find a way to make it work. Naturally a 12 year old is trying to test the limits and yet I find there is a fine line between allowing that to happen, and helping to empower this age group in the decision making process.

Katharina and I had several chances to chat with each other today while we were at Katie's softball game. Katharina was telling me that she thinks about Mattie all the time, especially when she cares for her pet bird, a bird Mattie was intrigued by. Katharina is an only child, as was Mattie, and as am I. Only children communicate with each other in a particular way. I can't quite describe it, but I can usually tell if someone is an only child. Katharina and I spoke about Mattie's things this afternoon. I am not sure how we got on this conversation, but I basically told Katharina in answer to her question that I haven't given away any of Mattie's toys, stuffed animals, and clothes. Now mind you she is only 10, but her response was fascinating. Her response was very empathetic, and she basically said, she could understand my decision and most likely would have done the same thing. I was very touched by her response because it was not only sensitive, but it was as if she was telling me she understood Mattie was important, and you can't just give his things away.

Tonight, Ann invited over Carolyn (our Walk Raffle Coordinator), and Mary (our Walk Publicity Coordinator) to her house for a chance for us to reconnect. I have gotten to know Carolyn and Mary quite well through Mattie's illness, and they have been extremely supportive and also helped enable the Walk to be a success. We had a nice time chatting and sharing stories. Sometimes being around moms can be difficult for me, however, Carolyn and Mary are very sensitive to my situation, which helps tremendously. I appreciate so many of you who have reached out to me today to let me know your support is present in my life while Peter and Ann go on travel. It means a great deal.

I received four messages today that I would like to share with you. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Just wanted you to know I was thinking of you both on this Tuesday and everyday."


The second message is from my friend, Charlie. Charlie wrote, "I can understand how difficult it must be to believe in a merciful, loving G-d when your loved one dies too young and in pain. In Judaism, it is permitted to question G-d, to rail and be angry at G-d, but what is not, is to walk away and ignore or deny him. We believe G-d can handle all the anger and all the pain in your heart. What happens in our world that is not positive is hard to understand and even harder to accept. My own position is that we (the human race) have free will to make decisions and therefore sometimes things may (will) happen that we don't like. Sometimes I think G-d must cry at the choices we make here on earth but I believe that he leaves us to sort it out because he's given us the gift of deciding our own path. I also believe at the end of our time in a physical realm our spirits will find a way to reconnect with those we love who have gone before. I am sure many people who read the blog will disagree with this and that's fine too, whatever carries one through the day and does not harm another is a good path to walk. One of the tasks of grieving is to find a way, a place to put or channel all the feelings including the anger and despair, into something creative or positive or that honors the person we lost. I respect your efforts to do that and I continue to send the energy of my practice to you to help you as you walk that most difficult path. I hold you gently in my thoughts."

The third message is from my friend and colleague, Nancy. Nancy wrote, "As this is Tuesday, I wanted to send you a message. I am proud of you for challenging old beliefs. Sometimes that is the only way that we grow. Children are not supposed to die before their parents and, yet, we know they do. You more than most know that this is true! I took in your words and feel your pain as time doesn't heal all wounds. We may learn how to cope differently with these terrible feelings. You show courage in getting up each day and dealing with all that you handle especially when all that you can handle is just getting up. That is a miracle when your heart is aching! As far as G-d works miracles in his own time and that Mattie is waiting in heaven for you and wishes you were here. First, I do believe that G-d tests us to see whether we have the strength to deal with his 'miracles'. Mattie's illness and eventual death is no miracle. It is painful, unfair, and enduring. What I do believe is true is that G-d's plan doesn't always fit our dreams and expectations. People don't either! I was rereading the Serenity Prayer this morning and writing about it in my journal. For your consideration:

God grant me the Serenity to accept the things I cannot change
To accept the things I can change
And the Wisdom to know the difference.

I agree with Rev. Sharon, G-d is strong enough to handle all that we ask of him, push him away when we doubt, and accept us when we ask for forgiveness and want his help. G-d asks us to believe in a greater power than man. Sometimes I think all we have is G-d. I know that you have difficulty with this and that's ok. Deep down, you need to be angry with someone or something and what better ideal than G-d. I believe this is the hardest piece of grieving, handling our anger at the things we can't control. Cancer is sometimes bigger than us and we are powerless. That is the hardest issue to accept, that we can't protect our child. It is the greatest challenge for a parent. All we can do is love them the best way possible and there you can have some peace as you did this supremely with Mattie. I know that the following week will be a challenge. I am only a phone call or email away. Please reach out if you need too. I am here for you. Please take care of yourself today and be kind to yourself as you are with others."

The fourth message is from Mattie's social worker, Denise. Denise checks in with us periodically and I was very touched by her comments today regarding Mattie. I am happy he is still on Denise's wall of fame in the Lombardi Clinic, and I do agree, Mattie was special and famous in his own right. Denise wrote, "I could not let this day go by without stopping in to say hello and checking in on you two. I enjoyed seeing you on the 24th and appreciate you all bringing Sean to the clinic. I think he had a powerful impact. Today, I am reminded that it is Tuesday, the 8th of June and 9 months since you lost your precious Mattie. I recognize that you all are still going through a difficult time and I want you to know the door is always open for you. On Sunday, my husband and I went to the Brooke Conservation Center and we saw an exhibit they have focusing on butterflies. I saw two cocoons and could not help, but think about Mattie and his interest in butterflies. Actually, I think of Mattie as a butterfly because he transformed the lives of so many people here at Georgetown. I once asked him for his autograph because I told him I had a place on my wall for people who I thought were going to be famous one day. I think he achieved that, certainly here at Georgetown and through the work of your foundation. You all continue to be in my prayers, I know it's a long road and not an easy one."

Monday, June 7, 2010

Monday, June 7, 2010

Tonight's picture was taken in December of 2008. Mattie had completed both limb salvaging surgeries, and this was the first time I actually saw Mattie attempting to walk independently at home. I was so excited, I grabbed my camera to record this special moment. Unfortunately, I did not get to see Mattie walk much at home. Between intensive chemotherapy treatments and most likely because his cancer was so aggressive, he really did not have the energy for physical therapy at home. Nonetheless, I recall this walking moment in time so vividly.

Poem of the day: I Wish You Were Here by Angela Salyer

Although from Earth, our loved ones are gone

They live in our hearts as time goes on

God truly blessed us with the time that we had

Though their departure leaves us very sad

"Time heals all wounds" We've heard it before

A broken heart gradually begins again to soar

God works miracles in His time, not ours

Not by our wishes, but by faith and prayers
By each person he claimed, we were given a gift
Wonderful memories for our spirits to lift
Reunions and Christmas, and simple every day fun
To carry with us always, until our work here is done
Thank God for Kodak, for video and audio-tapes
And for the time together that this family takes
The message is clear from those who have started life anew
"We're waiting in Heaven for each and every one of you"
Each one would say "Don't cry for me dear"

"This place is wonderful, I wish you were here"

Tonight's poem causes me to pause. Why? Maybe because I want to believe what the poem is saying or because I want to say to the author, are you kidding me? Three lines in particular evoke all sorts of emotions within me. They are: 1) Time heals all wounds, 2) God works miracles in his own time, and 3) we're waiting in heaven...I wish you were here.

Do I believe that time heals all wounds? This is a statement I find as trite and condescending as the term, "new normal," which was used in the hospital with us when Mattie was first diagnosed. Time does not heal all wounds. In fact, some wounds will always be there, and unlike a surgerical scar which is visible to the eye, with grief, the scars are internal. They can't always be seen by an observer, but they are indeed there. If you think I am being negative or pessimistic, I suggest that you imagine having your own child diagnosed with cancer, have to endure months on end in the hospital undergoing all sorts of treatments and surgeries, only to eventually hold your child in your arms has he/she fights death. If you think you can forget any of this, and you think there will not be some sort of wound remaining forever in life, then I want to know your secret.

As for the line, "God works miracles in his own time." Well perhaps! In fact, prior to Mattie's cancer, I most likely would have accepted this statement, and not questioned God's ways. However, I have greater doubts now about my faith and also about God's abilities. I have seen death, but painful death, bestowed upon a child. My child! So my belief in miracles right now are not too forthcoming.

The final line, "we're waiting in heaven...I wish you were here," naturally makes me re-evaluate the premise of my whole religion. After all, if children can get cancer and also die, and die in an inhumane manner, then I have to ask what type of God allows this to happen? Clearly, I am angry, and clearly, there are many issues I need to explore and come to peace with (if possible). I remember Rev. Sharon, the chaplain at the Hospital, who spoke to me weekly over the course of Mattie's illness. Sharon saw my evolution from a spiritually based person to someone who couldn't even discuss religion. However, the beauty of Sharon is she said that God is strong and can handle whatever I have to say or throw out at him. I appreciated her saying this because naturally there is great guilt over admitting the things I am saying tonight. It goes against years of religious education and my core belief system.

As this week is just beginning I am coming to terms with the fact that Ann and her family are going on a vacation in a few days and Peter is leaving on a business trip to Africa on Friday. These are big changes in my life, since these two people are my, physically present, daily support system. I will miss them both greatly. I spent the day with Ann and her children, and we ran all sorts of chores, got lost trying to find Goodwill (which I assure you we can be funny to watch, since we are both directionally challenged), and in a short period of time we went clothes shopping, to the bookstore, and also to get ice cream. I sometimes forget the pace one has to keep when you are with children, but with Mattie I was always hopping from one thing to another. Which is why I coined the term, "mommy speed shopper." Mattie HATED shopping, and in order to get pick things out with him, I basically couldn't stop moving, I would literally grab things in a simliar fashion a track player passes a baton to the next runner. 

Tonight I posted pictures of the 9 raffle items that were featured at this year's Mattie Miracle Cancer Foundation Walk. Carolyn, our raffle coordinator, and her raffle team did an outstanding job soliciting businesses and individuals for fantastic items! The raffle was a huge success at the Walk. We want to thank all our pre-raffle ticket sellers and of course all purchasers of raffle tickets.

Item #1 - Annapolis Sailing Excursion
Sail Away for a fabulous day on the bay aboard the Windemere – a 39’ sailboat docked in Annapolis. Day sail is for up to 4 people for 4-6 hours and
can be scheduled for week/weekend day this summer (excluding Memorial Day Weekend, July 4th Weekend and June 12-20).

Item #2 - Washington Nationals Tickets
Enjoy a Saturday night out at Nationals Stadium – June 19 – first pitch at 7:05pm – when the Nationals take on the Chicago White Sox. Game package includes 4 Diamond Level seats with parking and a $35 per ticket allowance for food or merchandise.

Item #3 - Summer Fun Basket

The Dog Days of Summer are just around the corner – and this item has everything you will need to keep the entire family entertained and excited all summer long –including SSSAS Summer Camp, Baseball Tickets, Top Golf Membership and so much more!

Item #4 - Professional Portrait Package

Capture that special moment with a professional portrait by a premier DC photography studio. This priceless package includes sitting fee and a free 8 x 10 portrait.

Item #5 - Around Town Gift Basket
Enjoy all that Alexandria has to offer with this variety of gift certificates
from local restaurants and vendors.

Item #6 – Let the Sun Shine In Basket
Brighten your day and your home with this cheerful collection of “sunny” home adornments including, a handmade quilt, note cards, sun catchers – and other items to let the sun shine in - even on a rainy day!

Item #7 - Pamper Me Package

Everything the “Lady of the House” needs to feel relaxed and pampered –
from a day at the spa to some special items just for her!

Item #8 - Washington Capitals Fan Pack
A Caps enthusiast’s dream – a fabulous collection of Caps Memorabilia and Autographs!

Item #9 - a case of BBQ sauce, from the Pork Barrel BBQ restaurant in Del Ray, VA.














I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am glad you got out yesterday and that you enjoyed the day. I too have noticed that people can no longer pay attention to only one thing. I was at a concert yesterday and it seemed as though half the audience was either talking or texing on phones during active portions of the concert. This was in spite of all the stage effects and the usual things that surround an open air concert. Baseball is a game from our agricultural past when time was less of an issue (it is one of the remaining untimed sports) and it runs at a much slower pace. So to keep the "multitaskers" occupied, they've added all these other things/events to the game experience. I think that all of this has subtracted something as well; we've lost the ability to focus for any length of time on an event or a person or a project. In a sense, we are all becoming ADHD like. I am glad that given your feelings about baseball, that you were able to "connect" with Margaret and have a good day in conversation and people watching. As I sit here looking out into the woods, connecting with nature and listening to the birds, I wish you the serenity I feel when I take time out to do this. I hold you gently in my thoughts."