Grace for Rett » Grace's Life with Rett Syndrome

She knows so much more than I thought

Don’t get too excited. I Photoshopped this photo to make her sitting unassisted 🙂

Grace seems so grown up lately. And suddenly, we’re becoming aware of her sense of knowing. She knows so much more than we thought she did. She knows her name, she knows when it’s time for a meal. She knows what we’re saying.

The other day we took the kids swimming. I was working with her legs against the side of the pool and we had our back to the kids who were splashing, shouting, playing. Elijah was behind us talking and she didn’t take any notice but when he said “Grace, look!” She instantly turned her head right around in his direction in response.

That same morning, Steven came into the living room and laid on the floor with her for a cuddle. She lifted her arm, plopped it onto his shoulder, looked him in the eye and whispered ‘Dada’. And now that we’re more attentive about looking for signs of understanding, I’m beginning to see her saying Dada a LOT. Her mouth says it all the time and in times where she’s actually sitting with him when it would be appropriate for her to say it. It’s just that the sounds don’t come out very often.

And I’m finding that the more we treat her like she knows everything an able child her age knows, the more we realise that she actually does. You know, older girls with RS know things like how to spell their name. You just have to work out communication systems like eye pointing and take advantage of communication devices to give them a voice.

It’s conflicting for me, though. Somehow, when I thought she would never have a clue, it was easier for me to accept her disability. But now that we’re meeting other girls who are older, in addition to our recent experiences with Grace, it makes Rett Syndrome much more of an enemy than ever before. It’s devastating to know that Grace is thinking things, knowing things and wanting things but trapped in her own body, unable to voice them or even do something so simple as reach out for a cookie when inside, she’s screaming that she wants it. I guess I will never be at a loss for pains and emotions I have to continually give up to God. He has a plan for Grace, I know that very well.

Sara - September 11, 2010 - 4:38 pm

It is really hard watching them grow, yet i learned never to underestimate Livvy, she suprised each and every day. When she lost her ability to work the doctor said she will never get in back, but she did. I always go by the saying “never say never” withour girls. Their strength of spirit inspires us all xxx

aida - September 24, 2010 - 6:38 am

just linked from darren rowse’s website. i just want to say that i don;t know anything about this retts syndrome until now. your daughter is so beautiful and cute. i will pray for her and your family. God blesses you more than you’ll ever know. i am just learning photography and bought my camera a few months ago, i am loving it. Love will lead you. God bless you all…

Lisa - May 2, 2012 - 1:57 pm

Just a thought, but if Grace has control over her mouth and /or her hands…she may be able to use a computer to communicate. I’m not sure what the system is, but I’ve read about children who are non-verbal finally finding their voice using this system. It’s amazing.

F a c e b o o k