Edda falls asleep in the most unlikely of places.

Edda’s school year has started and it is always nice to see her enjoying her friends and teachers at school.  I just finished reading a memoir called Keeping Katherine.  The author has a daughter who has Rett Syndrome (who is now in her 30s) and I really enjoyed reading it.   Some of the feelings that she expresses are spot on with what I felt or what I feel – other very strong feelings that she had did not apply to me at all. I’ve known about this book for a long time, but I did not read it until now because I didn’t not think I was ready yet. My own feelings about Edda and her disability are always such a jumble – acceptance, grief, hope, action and, of course, love – it’s very difficult for me to put into words.

In the photo of Edda above, you will notice she’s wearing a silver necklace.  It is the guanine base pair, the one that she is missing (806delG).  Guanine pairs with cytosine in the DNA strand – so I always wear my cytosine necklace.  

5 thoughts on “”

  1. Doris, I am so touched by your words. You inspire me and give me more hope than you'll ever know.

    I was also deeply moved by the necklace you and Edda share. What a meaningful symbol.

    Hugs to your family

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