Grace for Rett » Grace's Life with Rett Syndrome

Her Hands

The hallmark symptom of RS is this persistent hand wringing. It’s been described as a hand washing motion, but I don’t know how ‘they’ can call it that. It so is not. What the girls do with their hands is so individual to the girls. Some clap, some roll and rub, others constantly mouth their hands. Some keep them separate in their habits, others bring them together. For Grace, it’s the obsession with her hands that causes the most frustration when it comes to photographing her. But also some smiles. For every one photo you see of Grace looking at the camera, there are 40 of her licking her hands, running her fingertips across her lips, rolling her fists around like she’s picking a fight (eeeeey wise guy).

I really do love her little hands, though. They’re pretty useless. She doesn’t do anything with them. But I’d venture to say that they’re one of the greatest joys of her life. Her best little friends. Because they’re so often tightly gripped into a ball, her little fingers are a bit bent. They’re so delicate and soft and they always smell good from constantly being in her mouth. She still has that sweet, fragrant newborn breath and it makes her hands smell sooooo good.

Although her hand habits get elevated when she’s anxious, stressed or upset (that’s when she bites her hands and arms in frustration), her hands are also a sign that she’s happy. The happier she is, the more fervour goes into those fingertips as they brush across her lips over and over and over and over and over and…

Rachel - September 24, 2010 - 4:39 pm

I LOVE her hands! God Bless you! She is such a beautiful little gem! you can see it in all her photos!!

juanita stamp-hillier - October 15, 2010 - 9:13 pm

I have a daughter who just last week got diagnosed with Rett’s as well and i would have to say her hands are her best friend too! I love reading your stories it is like a day in my own life and I take great comfort in knowing their is someone out there who understands. Thank you so much for having the courage and strength to share the life of your “beautiful little girl”.
“just another mom”!

Tracey - October 23, 2011 - 11:59 am

I’m reading back through all your blog posts – I just found your blog today. My daughter Jovie has been formally diagnosed with Autism & a Global Development Delay, however all our doc’s are still investigating Retts & Fragile X. We won’t know until next March or so once her blood tests are back

I just wanted to say that this blog post about Grace’s hands – gosh it hits home for us. I never thought of it that way, that they’re her best friends but that’s perfect.

Would you take the time to watch the video we made about her? There’s a little bit of video showing her hands


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