Tonight's picture was taken in November of 2008. Mattie was in his room recovering from his second limb salvaging surgery. As such it was a major feat just to relocate him from his bed to this hospital chair. I can tell given what was going on in the room.... it was a Friday!!! Because the volunteers in our room were from the University's chemistry club. They who would visit every Friday and share an experiment or two with the kids. Mattie LOVED these experiments. If Mattie was unable to come out of his room, the experiments came to him! Though the room was tiny, somehow we made it work. I have to say this was an adjustment for me, because the hospital room was like entering our home. Sometimes I really did not want people in our personal space, but because I knew it was for Mattie's best interest and his emotional health, I put up with all sorts of things and at all hours of the day. When I reflect on the chaos we lived through for months on end, it is truly hard to know how we are still standing.
Quote of the day: Do not be afraid to color outside the lines. Take risks and do not be afraid to fail. Know that when the world knocks you down, the best revenge is to get up and continue forging ahead. Do not be afraid to be different or to stand up for what's right. Never quiet your voice to make someone else feel comfortable. No one remembers the person that fits in. It's the one who stands out that people will not be able to forget. ~ Nancy Arroyo Ruffin
I have never been to Winchester, VA, but it is about 90 minutes west of Washington, DC. The countryside is quite beautiful, but since we were driving at night, it was a bit of a dark sort of experience. Unlike today's trip home which was filled with beautiful landscapes and scenes of farms and cows! 
I originally thought we were going to present one thing today, but then one of the leaders of today's retreat asked whether we could also include information to parents about trauma. Though this wasn't in my plan, I trust her insights and I know she understands her audience. So I really took her guidance to heart. Thankfully I did! So for this past week, I have been revamping our entire slide deck! Up until last night as well! Since Peter was on travel too, I was unable to really sit in one location and talk this through with him. So last night at the Dancing Goat we worked through 70 some odd presentation slides since our presentation was over TWO HOURS today!!!
In the process we also met and chatted with several incredible parents. One couple lost all three of their children. One child to cancer, the second to an accident, and the third had a heart attack. The mom described her child who had a heart attack, by saying that he died of a broken heart. How could he not? He lost two other siblings. The question is how does this mom go on? I of course know the answer to this.... there is NO answer!
I met another mom who I chatted with for a while. She came up to me to tell me how much she enjoyed our presentation and how much she appreciated all the data and research we shared. She was candid with me and told me she did not like the fact that I showed the four minute remembrance video of Mattie. Peter and I gave an introduction and after our introduction we explained that Mattie guides our mission and our work, and since we are all parents, parents share their children with each other. So we felt it was important to share Mattie with all of them. We wanted them to understand that we knew what it was like to be in their shoes. I understood the feedback she was giving me. She wasn't telling me to cut this video out of future presentations, or that she did not see the relevance for why we shared it. She was just telling me it was hard for her to see it and she was thankful that our whole presentation wasn't comprised of this very raw emotional content. Most likely that would have been hard for everyone in the room to sit through. Talking about research and data and then applying it to one's life circumstance is much more relevant, especially in the context of a parent retreat. But what I also got from our dialogue together was this mom feels different from the mainstream cancer community. This is her story, so I am not going into detail about it here. Nonetheless, after talking with her, I concluded that we all handle our child's cancer journey differently. Because the research or those within the cancer community suggest we should do x, y, or z, doesn't necessarily mean that will work for everyone. Sometimes we have to be ourselves and figure out what will work for our own mental stability. Being different does make people like this mom and myself stand out. I usually keep my opinions to myself now, but she and I were talking the same language. As if we studied at the same school of hard knocks, and yet we just met each other. A rather surreal experience, which I wouldn't have had if I did not go to Winchester, VA!
No comments:
Post a Comment