#TakeThatRett

I see #takethatrett as a rallying cry every now and again.  When someone’s daughter takes a few steps, when they say a few words, when they climb a few stairs.  It’s wonderful to see girls pushing through the hardship that Rett has dealt them.  And considering how Mggie’s been doing lately, slowly getting back to what she was prior to this most recent illness, I thought I could explain to the non-Rett families what #takethatrett really means.

I took a step back on a recent post I saw and recognized that it must be hard for typical families to understand what #takethatrett was really all about.  You see, everything is hard for girls with Rett Syndrome.  Maggie has recently been losing her balance.  Her hand function which was minimal is now next to nothing.  Walking up and down stairs is not easy.  Eating is complicated.  Climbing into a bath is too dangerous for her.  Sitting on a toilet requires more strength than she has.  Everything is hard.

Many girls with Rett Syndrome can’t do any of these things at all.  They are in wheelchairs, eat via feeding tube, have to get carried up and down stairs.

But still, each and every one of us fights.  We take them to therapies, though we don’t know if she will be able to do anything at all at therapy. We push her teachers to pay closer attention, though we know that’s asking a lot.  We work with our daughters with as much energy as we have to spare.

And every now and again, they surprise us.  They do something we’ve been working on for years, or just something they couldn’t do yesterday.  And we take to social media to exclaim that we’re beating Rett.  #takethatrett – you can knock her down, but you can’t keep her down.

Typical parents may go, “so what?  she can open a door.”  But if they had any idea how hard it was to get her to put all of those pieces together…if they knew the kind of work and tears required to make that connection to allow her to do that, then they too would understand.  #takethatrett isn’t just a hashtag.  It’s an exclamation of relief that despite 1000 things against us – on this one day, one thing worked.

Tomorrow it might not work again.  But for today, she’s back to fighting Rett Syndrome and that’s a reminder that no matter what Rett Syndrome takes from her, she can still take some of it back.

#takethatrett

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