Friday, February 3, 2012

Friday, February 3, 2012

Tonight's picture was taken in February of 2009 in the Childlife Playroom of the Hospital. Mattie spent many a day in this playroom when he was well. Sitting next to Mattie was Sally, the storybook lady. Sally is quite a gifted actress who has her own production company. Yet would volunteer her time in the hospital. We LOVED the days Sally came to the unit. We acted out all sorts of plays and things with her, and she took a liking to Mattie. She appreciated him and was able to bring him out of his shell on bad days. Each hospital visit, Sally came dressed as a particular part or theme, to help give flavor to the story she was sharing with us. However, Sally didn't just read a story, she made all of us ACT it out. I typically played the witch, something I perfected over the course of 14 months being locked up in a hospital. In this picture, Sally was celebrating African American history month, and she introduced Mattie to the power and symbol of the drum.

Quote of the day: Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. ~ Leo F. Buscaglia

Today we lived out Buscaglia's quote. I joined forces with Girl Scout Troop 3989 at Georgetown University Hospital and we delivered 100 Build A Bears to the Childlife Department. As my faithful readers know, last Friday, I went to the mall and met this troop for the first time and got to participate in their bear assembly process. However, that was only part one of their service hours to Mattie Miracle. The second part happened today. To me the act of service learning actually means participating in HELPING those you plan on serving. So making the bears was indeed important, but it would only have purpose and meaning if the girls then visited the hospital and got to see the units and delivered some of the bears to the children. I believe it is through human interaction and feedback that our quest and passion for service learning gets nurtured and further inspired.

Our wonderful friend Tim, who is an Associate, Administrator at Georgetown University Hospital came by to visit with the girls today and congratulated them on their service and contribution to the Hospital. When I entered the hospital today, I had a ton of Mattie's stuff with me and felt like a wilted flower. Tim immediately grabbed the Mattie bag and carried it throughout the hospital for me. That kind gesture meant a lot to me, as did his presence today.

As with all my Foundation presentations, I brought Mattie items with me. To me it is important for others who interact with us to know that Mattie was a real boy, who led a profound life in seven short years. He is our constant motivation for what we do and guides us on our mission.

My friend and Mattie supporter, Tanja, journeyed with me today. Unlike others in this childlife playroom, Tanja understands the ramifications of that room (since she played with Mattie in it) and just the simple presence of being in the unit. Tanja took a picture of the troop leaders with us. From left to right are: Pam, Trevor, Vicki, Tim, Katie (childlife specialist), Heidi, and Ellen.

The Girl Scouts had a half day of school today, and when they arrived at the Hospital, Linda (Mattie's childlife specialist) allowed us to close down the playroom for several hours so the girls could have lunch, I could do a presentation, and then we could assemble the distribution of bears. I have done many Mattie and Foundation presentations but ONLY to young adults and adults. Today was my first experience presenting to teens. I walked a fine line between being honest and graphic and trying to temper the information so as to not scare the girls. In my adult presentations, I am much more candid about the horror of cancer and the devastating on a family. I do think with this age group things do get absorbed but thoughts and feelings aren't always easily shared. However, in time I believe the pictures they saw, the information shared, and video of Mattie will get absorbed and sink in.

I introduced the girls today to Lauren Chelenza, the founder of Bows for Hope. As my readers know, Lauren is a 13 year old Osteosarcoma cancer survivor, who battled cancer in Pennsylvania during the same time as Mattie. When Mattie died, I think Lauren felt compelled to do something with this loss and she used her creativity to basically create her own non-profit whose mission is to financially support Mattie Miracle. I am in love with Lauren as a person and feel she is an outstanding role model for young girls. The Girl Scouts were very interested in Lauren, in how she was doing, and they also wanted to know about her mobility and prosthetic. Through Lauren these girls learned about repiphysis technology. Lauren was kind enough to make every girl today a Bow for Hope (www.bowsforhope.com). The girls were thrilled and we took a group picture with each of them wearing Lauren's bows. The irony is I did not have to encourage them to wear the bows, they naturally gravitated to the colors and wanted to put them on. Brava Lauren!

I would like to share some pictures I took of the girls walking around the pediatric units today. I entitle this one, "en route" to the transplant unit!

Katie, a childlife specialist, escorted us around the floor today and got consents from five families for us to take pictures. Which I appreciated! This is the second event Katie has participated with us on, and we value her support and enthusiasm. Featured here is Mathias and his mom. When we got to Mathias' room he was lying in bed. Yet with help he popped up, got his shoes on, and greeted us at the door. Because most of the transplant children live under constant contact isolation, we couldn't enter Mathias' room, but he was happy and motivated to receive a bear!

The next family we visited was baby Nicole and her Mom. Naturally it isn't easy for a family to be caring for a sick child and isolated in a hospital room. So in many ways I felt that Nicole's mom was grateful to see adults and have live interaction today. I remember the days being isolated in a hospital room, and I am not so sure I would have been as gracious about a stranger taking my picture as many of these families were today. Nonetheless, the children and their siblings appreciated the bears. I rode down in the elevator today with a sibling who received a bear and she was beaming from ear to ear and felt very special! Mission accomplished.

We then journeyed to the PICU. The unit Mattie lived in for over a year. Though Cory is a teenager, he was very happy to chat with us, he invited us into his room and was smiling as he received a bear. With Cory is Elizabeth (one of the girl scouts) and me. The irony about this room is the last time I was in it, Mattie had died. It is hard to look at this room the same way. Though the sun was shining in through the window, to me it was like walking into a funeral home. However, I was the only one seeing that vision.

Our next stop was to see this cutie, Sophie. Sophie was actually one of the children who was at the Verizon Center event with us. She was beyond thrilled to be visited by the girls and to receive her own bear! As you can see she invited some of the girls all around her bed!

Our last cutie which we were allowed to photograph is Destiny. A very beautiful name to go with a very alert and curious little girl. Destiny loved the bear and was playing with it once we walked out of the room. It is our hope that these cuddly creatures bring a smile and some moment of happiness into the lives of these courageous children.

As I told Tanja today, I was so happy she came to our Georgetown event. We had a good time processing the day and it always helps to have a friend there who knew Mattie and is part of our mission to see the Foundation grow! To end my day with a smile, my friend Heidi, told me that she and I were in the local paper, the Alexandria Gazette. Since I don't live in Alexandria, but I wanted to see the paper, I googled it. Here is the picture in question from our time together at the Zumba Explosion fundraiser last Sunday. If you look closely you will see Heidi and I!

I would like to end tonight's posting with two messages I received today. The first one is from my friend Heidi. Heidi wrote, "Your presentation got me thinking about a lot of things I never realized...the lack of drug choices for children with cancer, the effects on families, the financial issues...I know it must be difficult for you to re-examine and create awareness every day. You are an inspiration! So glad that our paths have crossed. You are so good at connecting with all types of audiences. You have a gift."

The second message was from one of the girl scout troop leaders. Pam wrote, "On behalf of St. Mary's Girl Scout Troop #3989, I want to thank you from the bottom of our hearts for everything you did to make such a beautiful experience for our troop today. Your presentation was amazing, and from the heart. The love you have for your son is contagious, and grows in those you surround and educate, and I know will impact the lives of the ten girls you met today. Fridays are always tough for the girls. They are very tired, and have been under a lot of school and social pressure at school. I assure you they were listening. As we drove home in my car with four of the girls, they talked about each child they saw and gave a bear. You had an enormous impact on these girls. I also find it amazing how they are like sponges - taking it all in - and sometimes you don't realize how much until you hear them conversing amongst themselves.
Thank you for all the arrangements you made with the staff and administration of Georgetown Hospital. Thank you for all your hard work in the preparation of your power point presentation. Thank you for your excellent presentation. You were so engaging with the girls. Most importantly, thank you for the opportunity you and the Mattie Miracle Cancer Foundation have given our girls. On behalf of our troop, I thank you!"