What Doesn’t Kill You…

After the overwhelming response to Wednesdays post So Sad, I feel a bit of rebellious, butt kicking, anthem singing is in order. My friend Abby responded to the post with this comment ‘What doesn’t kill us makes us stronger’, and even as I read it I could hear this song playing. I decided then and there it would be the subject of todays post. So thank you Abby!!

I think most people have lived through at least one experience that shook the foundations of their life. Something that brought them to their knees, trembling under the strain of a heavy burden. Something that made the present unbearable, and the future uncertain. Emotional pain is universal as well as unavoidable. While I’ve had a few of these experiences, none compare to the devastation of Rett syndrome. One of my best friends wrote about this in her blog the other day, and she said it so well I’ve decided to just quote her…

“Rett Syndrome is a genetic disorder that robs our daughters of the most basic functions that we take for granted. They develop normally and then -BAM- they hit a wall and tumble backwards. For Grace, who began regressing at just 6 months, this meant turning back into a newborn-like state. She is now nearly 4 years old and is still like a newborn in her physical body, but not in her mind. The most devastating part of this whole thing is that these girls aren’t mentally delayed. They’re entirely mentally capable and know exactly what they want. However, unless someone is fighting for them and listening to them and their every movement {even if it’s only their eyes} they can’t communicate these things.

There are things about Grace’s Rett Syndrome that can take me into such a deep sadness if I think about it. Obviously, there’s the risk for every girl that they can pass away suddenly – it’s a reality of Rett Syndrome. But there are the everyday battles of being imprisoned inside her body that hurt my heart the most. Can you imagine the helplessness of having an itch you can’t scratch? A toothache you can’t tell anyone about? An ear infection that only gets diagnosed when it’s become too painful to bear? Screaming exactly what you want in your head but no one else hears it? Or simply the inability to cough strong enough to rid your chest of phlegm?”

 

Rett Syndrome is all that and more. It is simply the most gut twisting thing I’ve experienced first hand. Knowing this is the harsh reality for my daughter, and the other beautiful girls with Rett that I’ve met and fallen in love with…well, it deeply, truly and royally sucks.

The most amazing thing about the human spirit however, is it’s ability to overcome – to more than overcome – to rally and gather momentum. I never fail to be inspired by stories of people who respond to hardship by rolling their sleeves up, and fighting back.

Not all of the lyrics in this song work, but honestly…I don’t really care. The bulk of it is spot on. I wouldn’t say I picture myself singing this to Rett Syndrome (that would be silly) but I do picture myself singing it to the pain I associate with Rett. I sing it in defiance of that pain. I sing it with rebellion in the bass, and courage in the harmony.

You think you got the best of me
Think you had the last laugh
Bet you think that everything good is gone
Think you left me broken down
Think that I’d come running back
Baby you don’t know me, cause you’re dead wrong

One other thing – I never sing it alone. That makes the lyric ‘Doesn’t mean I’m lonely when I’m alone‘ – for my purposes – one of the strongest in this song. I’ve blogged about the awesome network of parents we have in the Rett Community before, so please forgive the repetition, but it’s of such extraordinary value I need to highlight it one more time. Even when I’m physically alone, emotionally I’m always connected…that’s a huge part of where my strength comes from.

What doesn’t kill you makes you stronger
Stand a little taller
Doesn’t mean I’m lonely when I’m alone
What doesn’t kill you makes a fighter
Footsteps even lighter

I’m going to listen to this on full blast now, with my sleeves up and my fist raised…care to join me?

What doesn’t kill you makes you stronger….!