There's been a lot of talk over the past few days about the 'legacy' of these athletes, of the social progress which comes from events like these and of the lessons they teach us all. It would be nice to think that their legacy is global and profound, that it challenges perspectives, shifts attitudes and redresses relationships.
The world around me is a sharp, bitter, devastating blow.
Disorders should not be cash grabs.
It's more than “hatred of sound,” “chewing rage,” or “sound rage."
In a way, these half-written blogs and unfinished reflections sum up the past six months pretty well: a collection of emotions and experiences with few clear ends or answers, with dangling ellipses and uncertain next chapters.
Sometimes, in trying to explain the impact that Rett Syndrome has had on our lives, I have referred to myself and my husband as "damaged goods." People don't respond to this very well.
I have enough close friends with children whose milestones have, like Hannah's, not been reached, to know that I am not the only one who finds birthdays hard.
Five weeks after Hannah's diagnosis (five years ago today, hence the reflective post), I had six weeks off work, less because of the emotional trauma we'd been through and more because of the magnitude of the lists that needed to be dealt with.
can adapt my expectations about my life so that the disappointment and shock of landing in Holland instead of Italy is turned into celebration. I can do that.