Thursday, August 15, 2013

Thursday, August 15, 2013

Tonight's picture was taken in January of 2009. Peter and I took Mattie to New York City to start an experimental immuno- therapy treatment at Sloan Kettering. A treatment that had to be started in NY, but was continued for seven months thereafter (twice a week) at Georgetown Hospital. While in NYC, Georgetown University Hospital arranged for us to see the Lion King. We had six front and center orchestra seats to see the musical. Not only did we see the show, but after the show, we got to meet the cast and stand on the stage. Karen, my lifetime friend, and Emily, Mattie's babysitter and her husband joined us. It was a very memorable night for all of us. In fact, while Mattie was watching the show, he was bouncing around in his seat, dancing to the music. Music brought Mattie happiness, which was actually amazing given all he was dealing with at the time. The fact that Mattie could smile here was a testament to his fortitude and strength.


Quote of the day: In our time together, you claimed a special place in my heart, one I'll carry with me forever and that no one can ever replace. ~ Nicholas Sparks

Yesterday, I received an email from Lauren. Lauren is 15 years old, an osteosarcoma survivor, and one of our Mattie Miracle Faces of Hope. Lauren battled osteosarcoma at the same time as Mattie. In fact, they were diagnosed just a week apart from each other. Lauren lives in Pennsylvania and of course we live in DC. So you maybe asking yourself, how were they connected? After all Lauren was NOT treated at Georgetown. Our families connected through Mattie's blog. Lauren's aunt found our blog and then told Carey (Lauren's mom) about it. Carey reached out to me and I am so happy she did. We went through chemo and surgeries together, not physically but virtually. We understood each other's fears and concerns and of course we also understood each other's level of exhaustion. I remember we would write to each other often as I was sitting in Georgetown's PICU and Carey was at St. Christopher's in Philadelphia.

When Mattie died, this impacted Lauren. How could it not?! Children are not supposed to die and of course Lauren knew Mattie died from the same disease she was battling. A daunting notion! Most teens would probably acknowledge that Mattie died, put that somewhere, and try to move forward with their lives. NOT Lauren! Instead, Lauren became an activist. She brings awareness to childhood cancer both in her school and community and she also created her own non-profit called Bows for Hope (www.bowsforhope.com). Lauren uses her creativity to design hand crafted duct tape bows in almost every pattern imaginable and sells them on her website. Where do her proceeds go? Directly to Mattie Miracle! Over the past two years, Lauren has raised thousands of dollars for Mattie Miracle. We fell in love with Lauren in 2008, when we started communicating with her mom, but once we met Lauren in person, she had us hooked. Lauren is a beautiful young lady, sharp as a tack, creative, generous, and has a heart of gold. I can't say enough about Lauren.

Lauren took the initiative to reach out to Breland Emory. Breland is 17 years old and a beauty guru on the internet. She clearly has quite a following, which is evidenced by her over 87,000 fans. Breland, like Lauren, is absolutely adorable. She covers all sorts of beauty issues that are applicable to teens and when you watch some of her videos, even as an adult, she inspires you to try some of her hairdos. Though, as I said to Breland in an email, it helps to start with great hair.

Lauren was looking for other avenues to promote Bows for Hope and to raise funds for Mattie Miracle. Which is why she wrote to Breland and told her about her bows and about Mattie. Breland was so moved by our stories that she created a youtube video about us and featured Lauren's bows. In fact, she and Lauren designed a special edition glitter bow in honor of childhood cancer awareness (seems quite appropriate since September is Childhood Cancer Awareness Month!!!). I encourage you to check out Breland's video. Given the demographics of the audience she reaches, I think she presents a very serious topic in a way that is totally non-threatening and in fact she encourage teens to buy bows to support childhood cancer awareness. Or in other words to take a stand. To see Breland's video, click on this link: 
http://www.youtube.com/watch?v=-MCvlQpiRss

I began my morning by hearing doves! Literally I was sitting at my breakfast table, and all I could hear was WHO WHOOOOOO!!! WHO WHOOOOO!!! To me this is what a dove sounds like. Later in the morning, I  went upstairs and looked out Mattie's window. This is what I saw. Two doves perched on Mattie's windowsill. To me doves are very symbolic. They are called mourning doves for a reason. The only time Peter and I saw doves on our deck was when Mattie was dying. Specifically we had a mother dove nest in our flower box in the summer of 2009. She sat on her eggs for days. This occurrence never happened again! When I saw these doves this morning, they reminded me of the time we had Mattie in our lives. To me they were a sign that Mattie was with me. It seems ironic to me that these doves flew right to Mattie's window and hung out.

I began tonight's posting with a picture of Mattie in front of a Lion King poster. Now I am not ending tonight's posting with a different Lion King poster. This one is being displayed in Madrid, Spain. My lifetime friend, Karen, is in Madrid and today she sent me this photo. When Karen and I go on vacation, we always send each other photos. This way it is like we are both able to experience the moment even though only one of us is on location. When Karen sent me this photo tonight, she reflected on our time in January of 2009, when we took Mattie to see the Lion King in NYC. In fact, I can't think of the Lion King without associating it with Mattie and cancer.