Sarah lost skills gradually and slowly over time. We didn’t really think about the fact that she couldn’t do some things she used to do, it just was something we accepted. For a couple of years she was able to take little steps while wearing her harness for assisted ballet. Then, she couldn’t do it… Continue reading Assisted Ballet
Tag: cerebral palsy
Grass Experience
For many years our aross-the-back-fence neighbors were an older retired couple called Margaret and Frank. They were nice for the most part except that Margaret was obsessed with gardening and weeding her back yard and with the possibility of contamination from weeds or “trash trees” in our yard. We are not gardeners but we do… Continue reading Grass Experience
SUDEP
Cure SPG4 has added Sarah to their website with an “In Memory of” overlay, and with some words we wrote about her. If you make it over to the Foundation’s webpage, scroll down to the bottom to the “We Are SPG4” section and swipe through the kid’s little bios. Sarah is kid number 4, all… Continue reading SUDEP
True Facts
Little kids, and sometimes adults too, used to come up to me and ask me “What’s wrong with her?” when I was out and about with Sarah. I don’t blame kids for having questions but there was never any good answer and I sucked at handling this situation. Sarah understood everything that was said around… Continue reading True Facts
The First Year Without Sarah 