Grace for Rett » Grace's Life with Rett Syndrome

No child left behind (except the disabled ones)

One of the worst things about living in Florida with a disabled child is the way in which they just don’t matter. Grace has never been treated like such a low class citizen. It’s like they’re not even trying to pretend that these kids matter to society. Florida’s like “meh” about the disabled so it’s really no wonder they so often end up in the gutter. Case in point? Public transport.

People say, “you should sue!” or “I’d call the news if I were you!”. But listen…we. are. exhausted. We fight these battles every single day. We are always in crisis mode. Even as I write this, Grace is recovering from a 20 minute seizure. I don’t have any more energy for these battles.

I’m tired. I’m pissed. And today the only energy I really have it to whine to you fine people. A little reminder that we currently have a GoFundMe going if you’d like to share with your audiences that’d be grand.

So…drum roll please…I give you a few little excerpts just from the last month. Keep in mind we both work and raise two teenage boys while all this is going on. And we’ve all been living in one bedroom since we moved here in June.

There was that time last week when the medical transportation people just…like…decided not to pick us up…

And then that one time a man fell out of his wheelchair on the Lynx bus and we had to pull over in 100* weather for 2 hours….

Grace’s first day of school, the bus went to the wrong town…

And then then did it again less than 2 weeks later…

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