I'm going to try to blog more because this blog offers perspective - for me when I write - and from you when you comment. I learn stuff. Ryn Tales has also served as a centering force on this uncharted path. I have been feeling self conscious though about how much to share about Ellie. She is growing older and it's her story just as much as my own. From your comments, sharing parts of that story has seemed to help - serve a purpose - help others. And I am still learning about disability and how to navigate its ever changing face every day. The extroverted part of me wants to share every bit of that learning here to have help in making meaning of it. But like I said, it's Ellie's story, so some things I can't share.
Time is also an issue. I remember reading Biz Stone's Who Let the Blogs Out. It's a great book for anyone out there thinking about blogging and what to do. He really lays it all out for you. One of the things he says though, is that unemployment is the best thing for a blogger. Simply put - you have time to write and more importantly - time to reflect on life. Time to take the wisps of inspiration and commit them to the small screen. He was right.
Since I finished my dissertation, nothing slowed down. Instead I just got more busy with work and family and catching up with the long list of things I needed/still need to do for Ellie. Also upon finishing instead of feeling relieved I just feel restless and wound up - like all the things I put off for 18 months should not get done right away. Instead of feeling accomplished, I am more keenly aware of all the things I want to do that I now can with the letters. In that sense it's been a decade of waiting. Hence the restlessness.
What's in order however, is renewal and perspective and being centered. Sadly, none of that is coming naturally and is proving something I need to create myself with discipline and practice and acts. Blogging is one act. This blog is also something wholly mine versus being a thing I produce with my mind and creativity for other people and as such, not to be neglected. If anything I hope it continues to serve some small corner of humanity.
Last, I heard about this book on NPR today. I just ordered it so will let you know what I think. However, I hope more is written on this topic - disability. It's always on my mind. The love I feel for Ellie and the joy she brings me every day is something I always appreciate and am grateful for. AND a book like this that tells how various societies viewed disability differently may offer some proof that disability has been appreciated. Go see the Neanderthal skeleton in the Smithsonian where the note reads that the person lived and died of old age despite an obvious massive skull fracture injury. So if the Neanderthals valued their disabled enough to expend limited resources to keep them alive and treat them as a valuable member of the tribe, why not us? Or more specifically, why not all of us?
2 comments:
I have always seen Ellie as a child who is one chronological age but a mixture of developmental ages. When I saw her poem, the writing was very age appropriate for a 9-year-old but was about a topic that would typically interest a younger child. I think with individuals with special needs we need to recognize that Ellie may be three in some ways and fifteen in others and that very few parts of her are nine.
HI Laura,
Are you sure Fijits are only of interest to younger children? Ellie watches tons of videos on YouTube posted by kids her age and older - seems like the 10 - 12 year olds have a particular yen for Fijits.
Aside from that your point is well taken. She is a patchwork quilt. Her teachers say she has splinter skills - my recent question to them was - when do all these splinters come together to make a solid skill?
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