Searching for meaning.


When Edda was first diagnosed with Rett Syndrome, I had a few pals tell me that it just wasn’t fair and that I didn’t deserve to have a child with such a serious disability. I don’t often think of it in that way; for me, I’ve always understood that random mutations in DNA happen all the time and sometimes they result in someone who is stronger/swifter/smarter and sometimes it just doesn’t work out that well at all. So I always figured that Edda having Rett Syndrome is just the randomness of the universe.

But it doesn’t mean that I don’t try to find a more spiritual meaning in raising a child like Edda. Of course, Edda and her disability have taught me to become more understanding and patient. But my secret belief of why Edda is the way she is, is that somehow, somewhere I’m suppose to meet a person that will change my life. How will the person change my life? In what way? I dunno. That is the big mystery to me. I’ve met so many wonderful people via Edda and I continue to do so everyday.

On Saturday night, I met a group of local mothers who each have a daughter with Rett. We ditched the husbands and the kids, met up at a local grill and had a few maragritas (I got carded! Woo hoo, Asian genes at work!) and talked and talked and there was still more left to say. It was really, really wonderful.

4 thoughts on “Searching for meaning.”

  1. Well, I think Edda shows up in our screens has special reasons. Today, when I hugged her, she giggled and gave me a big smile which worth millions.

    What can I say? She is lovely in her own ways.

  2. Thank goodness for other Rett moms – the only people in the world who truly "get it" I only wished I lived closer so I could have joined you all!

  3. oh how i wish we were closer! I have never actually met another "rett mom". When I read your posts I know I'm not alone. Tomorrow we go to the orthopedic surgeon to schedule back surgery that we've been putting off for almost 2 years ,I so don't want to do it, but it is time.

  4. Good luck yarn shop girl! May the surgery go as smoothly as possible and that the recovery is quick and uneventful. Hugs to you all! (And I hope we meet someday in real life, you never know, it might be soon!)

Leave a Reply