I love that Lily’s classmates want to help her, play with her, work with her. I said in my previous post that she causes a bit of a stir everywhere she goes, and school is no exception.
Walking down the halls, kids stop by to say hi to her. The teachers, therapists and aides all look forward to seeing this kids smile. She is such a ray of sunshine to all she meets.
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.