Thursday, June 21, 2012

Thursday, June 21, 2012

Tonight's picture was taken in May of 2006. We went to the grocery store together, and while there, Mattie got this yellow balloon. This particular grocery store caters to kids and provides cookies and balloons. Two approved items on any shopping trip with Mattie. Mattie, not unlike most children (though I hear I was different, since I was fascinated by food at an early age!), hated going grocery shopping, and being strapped into a shopping carriage in his early years was painful for him. With Mattie I learned how to shop while NEVER stopping the carriage. It was speed shopping at its best, because Mattie preferred to be in constant motion.

Quote of the day: After the game, the king and the pawn go into the same box. ~ Italian Proverb

I started the day by going to my zumba class. The first song Jenny played today was Dancing Queen. For most people in the classroom, they have NO idea how significant this song is to me, but Jenny does. Mattie liked ABBA music and he literally did physical therapy around the Georgetown University Hospital hallways to this song. I can't possibly think of this song without thinking of Mattie, his battle, and the countless hours of therapy we did together. Now in hindsight, I know how much pain Mattie had to be in since his cancer was spreading everywhere. Now I sometimes feel guilty that we pushed him to try to do therapy. But at the time, I used every motivating technique possible to try to get Mattie to energize and participate in his recovery. A recovery that NEVER happened.

After my class was over, I received a text message from my friend, Tina. Tina wanted to know what I was up to and invited me over to her house. I naturally hadn't planned for that today, but instead was going to work at home after my class. However, I appreciated the opportunity to connect, chat, see family pictures, and brainstorm about the Foundation. It is funny, I saw many wonderful family photos that Tina shared with me today, and then thought, that this is so lovely, I should share pictures with Tina too. To me seeing pictures and sharing stories are special ways to connect with a friend. But then I stopped and thought about this as I was driving home and realize, I do share pictures with Tina. Just not in the traditional sense. I share pictures with Tina through Mattie's blog, and since she is an avid blog reader, she shares in this part of my life. I have found that those closest to me are those who are avid blog readers. Naturally this is not a mandatory component of our friendship, but I find that on some level these individuals realize the blog is a vital part of me, and if you want to understand and be close to me, reading the blog is important. The blog represents Mattie to me. Mattie in words, and since Mattie was and is one of the most important things in my life, so is the blog. I have a hunch that those closest to me get that, without me having to state it. 

This afternoon, I had an appointment in the city, and while walking to my destination, I went through the campus of the George Washington University. While walking, I bumped into one of my former professors. When he saw me, he stopped to talk with me and asked me about the Foundation and how I was doing. However, I sensed he wasn't just going through the motions, he genuinely wanted to know how I was surviving without Mattie. I found his insight into my loss intriguing and then he admitted to me that his sister died when she was only 21 years old. He said that his parents NEVER recovered from this loss, and seeing this through the eyes of his parents, he worries about me. It was a very honest, real, and meaningful conversation. One I hadn't expected today.

I have two more nights of Walk photos to share with you! I haven't shared every single photo with you, but I have tried to give our readers a feeling for every aspect of the Walk.

At the Walk, we always have a ceremony in which Peter, myself, and our guest speakers share facts, insights, and feelings with our attendees. This is a photo of Peter speaking at the ceremony. Peter did an outstanding job of presenting childhood cancer awareness facts, the mission of the Foundation, and why addressing the psychosocial needs of children and their families battling cancer is crucial.

While listening to the speakers, one of our photographers snapped a picture of me. What I want you to see here is the beautiful headband I was wearing. This headband was designed especially for me by Ellie (the 10 year old creator of Bands for Hope). Ellie knows how special butterflies are to me, and that they symbolize Mattie's spirit. I attached a link to the May 22nd blog posting which highlights the message I delivered at the Walk.  
 http://mattiebear.blogspot.com/2012/05/tuesday-may-22-2012.html

This is a photo of Danielle, a leukemia cancer survivor, and her brother, Wade. Both shared their thoughts and feelings of surviving childhood cancer and the impact of this disease on the family system.







This is a picture of Wade, who gave a sibling's account of watching his sister Danielle battle cancer. Childhood cancer impacts siblings, especially since parents must focus their attention toward the medical care of the child with cancer. This redirection of attention, can impact every member of the family.

This is Marilyn, Danielle and Wade's mom. Marilyn is a wonderful parent advocate, and if you should want to read the speech she delivered, please click on the link to the May 20th blog posting below.  
 http://mattiebear.blogspot.com/2012/05/sunday-may-20-2012.html

This is a picture of Coach Dave. Coach Dave has been the Master of our Walk Ceremony for three years now. Dave is a crucial part of Team Mattie, and visited Mattie often at the hospital and at home. Like Peter, Dave wears his Mattie Miracle orange wristband everyday, as a reminder of this special 7 year old's presence in his life.

The photographers caught Peter and I in motion right before the Walk ceremony.

Immediately after the Walk ceremony, our special guests gathered on the track to take a picture with our banner. Our special guests are comprised of family, our Georgetown Hospital family, and childhood cancer survivors!

I would have never thought to take this picture, but before the actual walk began, one of our photographers took a close up shot of our banner and Amanda, holding the banner. I have highlighted Amanda's attendance at our Walk previously on the blog. Amanda is an Ewing's sarcoma survivor, and she proudly held our banner and led us around the track for the first lap.

The Walk attracts people of all ages! Here is a picture of one of our youngest walkers!

This picture captures many of Mattie's friends running at the Walk. Friends from both preschool (Emily and Charles) and kindergarten (Cameron and Tim)!

As I mentioned before on the blog, there is nothing Amanda can't do! As you can see, she is quite a runner and she truly inspires those of us in her presence.

I love this picture because along side Amanda is Mattie's friend, Kazu (Junko's son). Check out this picture, Kazu is literally flying through the air.

This is a picture of Junko's daughter, Bethie. When I look at Kazu and Bethie, they remind me of Mattie. They all have that slender and delicate body type. Most of the children in attendance were running and walking to have fun and to celebrate the spirit of the day. However, for Kazu and Bethie (and all of Mattie's friends), I imagine the walking and running on this track is a reminder of Mattie.

Many of our Georgetown University Hospital family were captured in this picture. The two ladies in the front are Tricia (one of Mattie's outstanding HEM/ONC nurses) and Katie (one of the wonderful Childlife Specialists at the Hospital). Behind Katie, is Toni (Brandon's mom).

I LOVE this picture! To me it captures our entire walk theme.... Love of Family! While this mom and daughter were walking together, this mom leaned over and kissed her daughter. That alone is touching, but what you should know is this is Suzanne. Suzanne is the mom of two beautiful daughters, the one in this picture and Amanda (an Ewing's sarcoma survivor). To me this photo has great meaning because it wasn't only Amanda fighting cancer, the cancer impacted her sister and the entire family. This is a proud mom, and I am so happy this tender moment was captured that day.