Grace for Rett » Grace's Life with Rett Syndrome

Grace got her feelings hurt (and I was jumping for joy)

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Grace has the most spectacular carer/nanny, Anna. She takes Grace to her church on Sundays and recently, came back with this little story of triumph for us. It’s bittersweet and you’ll see why…

Grace saw a little friend at church who was in her class at school last year. He (innocently) said to her something along the lines of, “Grace, I hope you can be normal someday like other kids…” She looked him straight in the eye and her lip began to quiver, and tears began to flow.

If you know Grace, you’ll know that this just does. not. happen. She’s the happiest kid. EVER. She smiles while getting jabbed by nurses looking for veins. Pretty much nothing upsets her – she’s calm and collected. It was clear that:

  1. She understood what he said 100%
  2. It hurt her feelings
  3. She expressed and communicated it

It can be hard to keep the faith sometimes. I require that in order to be on Team Grace, you MUST “presume competence”. You are not allowed to believe that she’s mentally retarded, cognitively delayed or any combination of the two. So when things like this happen, I jump for joy at yet one more reminder, proof even, that

Grace is there.

Grace understands everything.

Grace is competent.

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