Is it possible to achieve “Rett Zen” while helping those with Rett syndrome?

Over the years people have coined such phrases as “Zen of Running” and “ Zen of Cycling’, so why can’t we coin the phrase “Rett Zen”?  Here’s my definition:

“A mind-set and focus of energies directed at the day-to-day enduring care of those with Rett syndrome that is euphoric in nature”.

Somehow is just doesn’t make sense and you may wonder what direction I am going with this post.  Trust me it’s OK I wondered too! I won’t say that I have obtained a Rett Zen, rather a Rett Rut. Rett Rut is akin to the movie Groundhog Day with actor Bill Murray. Bill portrays a character Phil who is stuck in a time loop where the events of Groundhog Day repeat themselves like a broken record.  And so it goes day after day but something wonderful occurs. Phil changes his behavior, and people respond to his new actions, opening up all kinds of possibilities for playing with the unfolding of events.  As it turns out Phil has to be exiled from normal life so he can discover he is in exile from himself. 

As I tackle the multitudes of daily challenges of mothering two young ladies with Rett syndrome I struggle to maintain a healthy focus and balance. There never seems to be enough time in the day to achieve the much-needed warp speed to break the Rett Rut. 

And I suppose that I am not alone exiled in a Rett Rut, so I am going to continue to share my thoughts, ideas, suggestions even more regularly to reroute myself out of Rett Rut mode and into Rett Zen. Maybe others out there can also offer some suggestions along the way. Your comments can be added at the bottom of this post by clicking on the “comments” link below. I would sure like to hear what you have to say about Rett Rut and Rett Zen. Please drop me an email anytime.

Thanks for listening,

 Janine Battistone

Editor, Rett Syndrome Magazine

Janine@RettSyndrome.Info

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