On my way home tonight from work I was thinking on how I can incorporate my little Reilly Roo and Rett Syndrome (RS) into my blog. It is easy to keep it as a running blog but I do want to give Reilly and RS a voice somehow, someway. The challenge though is that Reilly is severely disabled. For instance she can not talk, use sign language, point or even coordinate her limbs to give us a hug or kiss. As a result there are little opportunities to relay stories like I did earlier on with London's little bathroom scene with me this morning. So sometimes I feel guilty that I don't do "enough" with Reilly or "engage" her enough but my standards of what "enough" and "engage" means are based on my definition and not necessarily hers.
Anyways I kept this dialogue up all the way home while listening to CBC in the background and then to my disblief I heard they were going to interview Ian Brown who wrote 'The Boy in the Moon', a story about his severely disabled son. It was funny how I was looking for some answers and wouldn't you know it some of them came through this interview. I haven't believed in coincidences for awhile, so I listened....
The hardest part for me is to put into words what I took away from this interview. I can easily process it in my own mind but to manufacture the right words is another battle and I don't know if I can do it justice. I did find a quote that speaks to one message that stood out for me. He stated that "with Walker, you can just be there and it is true. It reminded me that the truest story is the story that is right there: the story that you honestly experience as opposed to what you think you should experience." These words couldn't have been timed better for I need to continue to work on staying in the present moment with Reilly and enjoying things at a different level or rather from a different vantage point. I was going to use the word simpler but that is not fair or just, for she has taught me some invaluable lessons in the last 5 years. When I bring myself back to the present with such reminders I really embrace being present with the girls and getting pure enjoyment over the simplest things, such as guiding Reilly through some funky dance moves in the living room and seeing the brightest smile on her face.
So Reilly you will have to be patient with me as I find your voice through my fingers as I continue this journey of learning and living (and London you are not out of my thoughts, you will play a pivotal role in this journey as well - but I would appreciate some uninterrupted sleep during the night, please).
To read more about the Boy in the Moon that has won the Charles Taylor award....
http://www.cbc.ca/arts/books/story/2010/02/08/charles-taylor-prize.html#ixzz0f0FDtOIA
Monday, February 8, 2010
Reilly Roo
Posted by Juliana at 7:21 PM
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3 comments:
Excelletn post! Well-said.
But you should save some of this material for long run chatter. :)
Dont listen to Marlene!Selfishly...of course...I would miss all this good stuff if you keep it for long runs. First of all, I love that sweet sweet term of endearment,"Reilly Roo". It's so real as is your writing...enjoying it whether its coming straight from your heart or those voices in the head. Great material. And speaking of staying present and enjoying the simple things...I got the biggest kick today and do once a year every year of being able to fold and assemble those storage boxes from staples. That was one of my accomplishments today and I laughed in the moment because it really made me feel good!
One more example...my 3 year nephew was pumped the other day because "he was going to carry his skates himself". That enthusiasm is so precious!
Oh, my 2 year old is named Reilly Roo, too. I stumbled upon this loeking up information about his disability- a chromosomal disorder that makes him very much like a dwarf. I never saw another Reilly Roo before-- good luck with your Roo!
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