Wednesday, September 7, 2011


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.  


Erica said...

where did you find the necklaces? so cool!

sherah said...

I know I like that necklace too!

Doris said...

Marta said...

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

Doris said...

hugs to you too Marta and little Caroline!