A lot of the energy that I put into things this year involved writing, communicating and sharing parts of my story, as well as what was happening in the moment and the best action to take next. What I have to let go of, is knowing that a lot of what I wrote was the same stuff I wanted to share here on my blog, and seeing that my efforts didn’t all succeed, it’s easy to wish I’d used what energy I had to share everything here just once. Here I’d have known friends and family would have appreciated it and I’d have enjoyed starting one of my goals of being more connected day to day… of using my story to do good and hopefully help others if I can.
But then I realize, that isn’t really true at all :)… I haven’t wasted my time simply because my big “tangible” dream of moving in didn’t succeed, in fact a lot of things along the way wouldn’t have happened and wouldn’t be in progress if it weren’t for those efforts. So I thought, maybe I can find a way to use some of that communication again!… why write twice what you can write once? and why waste the efforts of all that was written?… 🙂
I have two missions really, one is to share my story and use it to help others, hopefully turning a bad situation into something good. The second is my goal of the Apt’s to help other patients and their families, a place that gives the feeling of a “home away from home” in a time of need. In one of my e-mails I was talking about my dream of meeting Ellen, but about how much I’d love to write her when we already have the miracle of our Apt. done. That way we could go to her with the fun wish of simply meeting her and sharing my story and dreams. This is an excerpt from that letter, which does well at sharing the thoughts behind my mission…feelings that came about through my own experiences over the years, while staying in housing for both adults and children.
“…Simply sharing my story in hopes of doing as much good as possible, not even sure in what ways that may be, but wanting to find as much happiness and love in each day as I can… my family by my side… for what time I have since we don’t know yet how long that may be… tell my goal and dream of breaking that line that is up between pediatrics and adult medicine where as soon as you cross over you no longer have all the color and beauty and fun in the design around you… Hospitals and places no longer seem to care about taking your mind off of your illness and hardship and turning your attention to playing and smiling and having fun, even though happiness and love and living in the now without stress of your health every second is what is most important in healing. Everyone knows that, when you are a child and growing up, and they protect you from it…but turn 18 and the walls turn grey, the art is all the same, the housing is limited and becomes whatever can be thrown together if anything at all, and all the talk is about your illness and how are you going to pay for it. All I ever did was try to escape all of that and I think it helped protect me… or I’d change the conversation and get everyone talking about something fun and actually part of life outside the hospital and the room would end up laughing together and forgetting about things for just a second. I remember my nurse coordinator coming out and thanking me one, day during the first year or two I think, but I didn’t know what she was talking about until my dad told me.
We are still all the same human beings inside that need to heal and we all have an inner child… who better to understand that than Ellen, the one who plays all day! lol That is my goal and idea behind the apts, the foundation to help create more, the importance of feeling at home and design in healing, and how much it has to do with being happy and comfortable in them.”