Seven Lessons I’ve Learned From Rett Syndrome

I know what you’re thinking… you’ve not heard from me in ages and then within 24 hours, I post three things.

Well they say that all (good or bad? I can’t remember the saying) things come in three so this will likely be my last one for a while. And it’s really just a repost of what another wise momma wrote. It resonated with me so much that I wanted to share it here.

Thank you momma-warrior Joanne for sharing your insights,  specifically the ones on bizarre symptoms and respite.  She has nailed it with her commentary on what Rett Syndrome has taught her.  Like I said in my earlier post, it’s a hell of a disorder.

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At school earlier today playing with bubbles!

 

The Beauty of Technology

A friend posted the below link on his Facebook page yesterday.  I began to open the link knowing that I was opening myself up to an avalanche of self-pity and ‘what-if’s’. So I closed it down.  But the title of the article, well, it stayed with me.  I woke up this morning and had to add my take to his somewhat smug post (which, by the way, I totally get and likely would have posted similarly had I not found myself in my unique parenting situation).

Here is the link: Stunning photo series shows what it’s like to grow up without technology’.  

Here’s my comment:

Just reading the title of this article fills me with a level of jealousy I never knew existed. I have two iPhones, two IPads, a tablet and a $20,000 eye gaze device that I rely on to not only speak to, but also educate and comfort my child with Rett Syndrome. And because of this technology, my 5 year old nonverbal child told me (through technology) last night that she wanted a jacket because she was cold. I don’t think anyone could truly understand how amazing that moment was – to hear her express her basic needs – unless they have to live through it. Not all technology is bad and not everyone can follow the ‘ideal life’.

I dream of the day when Rett Syndrome will no longer be our reality.