Tag Archives: rett syndrome

It’s been a year…

This week, it has been a year since we took Grace to the hospital after she had so drastically changed from a mentally present, vivacious little girl into a limp, disinterested newborn. Staring at her hands, ignoring her own feet, crossing her eyes and head tremors. It was all very scary, especially when we were...

She knows so much more than I thought

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...

Going Back to the Way Things Were

Today, I put Grace’s crib mobile back on. When she started showing signs of getting to that age where I worried that she’s reach up and pull it down on herself, we removed the fluffy, lavender sing-song Mammas and Papas mobile and tucked it safely under her cot for some other lucky baby. Now that...

Blowing Chunks – What a crap way to wake up

It’s becoming a 5am date for Grace and I. I stumble to her room out of a dead sleep, woken by her desperate plea for someone to pleeeeeease come save her. And before I even open the door, I can smell the vomit. Why does it happen at 5am? I have no idea. It’s been...

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