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:
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."
No comments:
Post a Comment