If you’ve been reading my blog for long, you’ll have a good idea of how I feel about John Mayer. It seems to fall a long way short of the mark to merely say ‘he’s a genius’. Or ‘his voice is like melted honey on the richest just-baked bread’. His lyrics are the cleverest form of poetry, and on some of my hardest days those lyrics either lifted my spirits or gave a voice to my anguish.
The music on my radio
Ain’t supposed to make me feel alone
Listening to John Mayer, whether it’s on the radio, in the car or on the stereo…I never feel alone. I feel connected, engaged and understood. I’m indebted to him….somehow, through his music, he gave me permission to cry, to shout, to wallow and then to pick myself up and get busy healing.
His latest album initially felt different from the others. Like spending time with a familiar friend who’s changed in subtle ways, making them suddenly unfamiliar. That’s not to say the changes were unpleasant, but they did take a bit of getting used to. It was like this ‘long-time friend’ had gone on a journey, during which they’d had some perspective altering adventures and soul deepening experiences. It felt weird at first, but once I’d altered my perception of who I thought this ‘friend’ was, I saw that nothing was missing…there was just a whole new level to admire.
The song Speak For Me – from the new album Born and Raised – is absolutely brilliant. The lyrics – as originally intended – are sharp and honest. Though I’m going to use them here to say something rather different, I hope you’ll also listen and enjoy the true meaning as opposed to my – very liberal – reinterpretation for the purposes of this post.
A couple of fellow bloggers (who also have daughters with Rett Syndrome) have recently written about challenges they’ve faced demonstrating the potential their little girls have. Emma’s post put ice in my veins and fire in my belly. Her daughter Eva was assessed without consent and determined to be Intellectually Impaired. Eva isn’t yet 5 years old, and can’t speak. How on earth could a valid assessment be carried out under these circumstances? Eva is just beginning to use an augmentative communication device with eye-gaze technology…give her enough time and she will be able to tell you exactly what she thinks of being labelled this way. The second post explores the same issue. Elizabeth’s daughter Grace tested with eye-gaze and the experience brought up some strong emotions. Partly from seeing the ways this tech could help Grace make choices; but also from the difficulty in obtaining it; the cost is somewhere in the region of £10,000. Both of these posts are well worth reading and I encourage you to check them out so you can get a more complete picture.
Show me something I can be
And play a song that I can sing
Make me feel as I am free
Someone come and speak for me
This morning, as I was feeding Emlyn her breakfast of blueberry yogurt, she seemed decidedly underwhelmed. This is typically a ‘lick the spoon’ treat, so I’ll admit it surprised me when she seemed disinclined to eat it. I cajoled, I implored, I begged, but all to no avail. Slow on the uptake from lack of caffeine is how I’m spinning this…but eventually something made me taste it. Yuck!! Bitter, sour and utterly un-appealing. Now – in my defense – this was not our typical yogurt brand, but I still should’ve thought to check the taste. Apologies galore and a liberal teaspoon of sugar later – after checking it first myself – I convinced her to try it again. She clapped with ‘you fixed it!!’ glee and each mouthful brought more appreciative ‘yum’ sounds. Had she been able to speak she could’ve said “yuck, that’s too sour” or “it needs sugar” after the first mouthful. The ability to communicate must surely be the most basic of needs?!
I try so hard to read every facial expression, each tiny message of body language, I try to put myself in Emlyn’s place and see the world through her eyes…but I still miss so much. She needs someone/something to SPEAK FOR HER. She needs at least that bit of freedom…the freedom of self-expression.
Show me something I can be
And play a song that I can sing
Make me feel as I am free
Someone come and speak for me
Someone come and speak for me
It breaks my heart to consider how often Emlyn must have something she wants to say and no means with which to say it. I ache for each word that goes unspoken, each need she can’t express. For every desire un-noticed, every question un-answered, and every hurt un-comforted…all for the lack of communication. When my older children were Em’s age, my days were filled with ‘Why’s’. Why is the sky blue, why does the door creak, why did that dog bark, why is the wind cold, why does my tummy make grumbly noises? So many ‘why’s’ it was hard not to say ‘Just because!’. Em’s curiosity is entirely dependent for it’s relief on my unreliable ability to see it. If I catch a question in her eyes of course I try to imagine what she’s curious about and then provide information or amusing stories to satisfy her. BUT how much do I miss? A terrifying amount even on my best day, I’m sure.
Just show me something I can be
Play a song that I can sing
Make me feel as I am free
Someone come speak for me
Someone come speak for me
Someone come speak for me
