Saturday, November 19, 2011

Saturday, November 19, 2011

Tonight's picture was taken in August of 2008, during Mattie first week of chemotherapy. Right outside Mattie's pediatric intensive care unit (PICU)room, Linda set up a place for Mattie and his two friends (Charlotte and Claire) to paint. This was an extremely hard week for Mattie, because the acceptance that he had cancer and was going to be at the hospital for days and nights was an impossible adjustment. Linda (Mattie's childlife specialist) helped normalize life in the hospital for Mattie. She made him feel like a "normal" child, she respected his thoughts and feelings, and tried very hard to always empower his decisions. Prior to meeting Linda, if you told me that painting on the floor of a PICU was allowed, I would have laughed and not believed what I was hearing. However, with Linda, I learned almost anything was possible and achievable in a hospital setting! This is one of many examples that illustrate Linda's commitment to Mattie's care, happiness, and spirit.  

Quote of the day: One of the most beautiful compensations in life is that no man can help another without helping himself. ~ Ralph Waldo Emerson


At the Friends and Sponsors dinner we attended on Thursday night, Peter and I had the opportunity to interact with a woman who came up to hug and thank us for our contributions to the Hospital's childlife program. This woman's niece is a patient at Georgetown University Hospital, and has a significant illness that has basically left this teenager living in and out of hospitals since she was born. Based on respect for this young girl's privacy, I clearly won't go into details about her here since I do not have her family's permission. But suffice it to say, I was so moved by her aunt's comments, that I can't seem to get this young person off my mind. It is simply devastating to hear such a young person asking the adults in her life..... "why me? Why am I so ill and suffering, and what is my purpose in life?" All excellent questions, but in my opinion these existential questions SHOULD NOT be on the minds of our young children! Children should be able to be happy, free, and healthy, not weighed down by the harsh realities of a life threatening illness. In so many ways, dealing with such illnesses cause children to be much wiser than their years and as adult we can learn so much from them.

Needless to say, I have reached out to Linda today, and I will be contacting this girl's family soon because I have some ideas about how we can help to give her a "purpose" in life. Some times it is hard for me to hear about the complaints other parents have about their healthy children, when I know SO many children each day are fighting life and death battles. Battles which make them question whether it is worth being alive, and battles which deplete families of their own physical, emotional, and financial health.

Peter and I had a slow day today. However by midday, we decided to take a four mile walk to Clyde's in Gallery Place Chinatown. We know the general manager of that restaurant. In fact, he used to be the general manager of Mattie's favorite restaurant in Alexandria, but he was transferred to this DC location in the spring. We wanted to meet up with this wonderful individual to personally thank him for his generosity to the Mattie Miracle Cancer Foundation Walk in 2011 (since he is responsible for Clyde's food donation at the Walk and for connecting us with Rebecca, an executive chef for the chain, who did all the BBQ'ing the day of the Walk). As soon as we walked into the door of this DC restaurant, I felt as if I knew the person behind the desk. But I did not say anything to her, that is until she saw my name. Then she knew exactly who I was, because she too used to work at the Alexandria location and remembered seating my parents, Mattie, and I numerous times. She is now a manager at the DC location and she personally escorted us to a table and chatted with us for quite some time before and after lunch. We miss these two individuals at the other location, because for me, making personal connections is what keeps me coming back to a place.

Overall, we walked about 8 miles today and got to see how DC is already dressed up for the holidays. It seems to me we are by-passing Thanksgiving and moving right into Christmas. This is a little disconcerting to me.

I would like to end tonight's posting with two messages. The first message is from Gordon. Gordon is the man I wrote about on Thursday, who we met at the Friends and Sponsors dinner. Gordon's son, Nicholas, is the young man who dressed up as Scooby Doo and greeted Mattie in his hospital room back in August of 2008. After the awards dinner, I wrote to Gordon and sent him a picture of his son with Mattie! This was a picture Mattie absolutely LOVED! This was Gordon's response to my email, which he said he was happy for me to post and share with you. Gordon wrote, "I have been pondering how to reply to your generous comments. I also looked at the blog and, uh, I got emotional. The two of you went through every parent’s nightmare. I can’t pretend I know how you have the strength that you do – but I did pray last night and thank god for revealing your presence in our lives. If this makes sense, and I mean no disrespect, Mattie has come back into our lives through your words and your deeds and that is an awesome gift. I hope both of you know the impact you had on the evening and you take a moment to feel that which we all felt – your generous caring sharing of emotion. You clearly framed the reason for the Child Life Program and hit the nail on the head with Linda. If ever there was a call to action on such a significant issue – you have done just that. Your advocacy in the name of Mattie is inspiring and one of the most unselfish deeds I have ever witnessed. I know I will see you both soon. With the utmost respect."

The second message is from our friend, Junko. Junko wrote, "I just wanted to tell you that I was so touched by your speech at the reception - so much so that I had to close my door in my office this morning so that people will not see me crying in front of my computer. I was so happy to learn that you were surrounded by such wonderful people last night, too. Everyone looked great, but especially, you, Peter and Linda! I would like to join the rest of your friends and families to tell you how impressed and amazed I am for you and Peter to do what you guys are doing."