Sunday, April 21, 2013

Lyrics Reprinted Without Permission

The other night, with both girls in the bath, I started singing something. I don't even remember what it was. As is usually not the case when I sing, someone asked me to sing more. Hannah wanted to hear a special song for her, and also a special song for Zoe.

Hannah actually has a special song, even though I rarely sing it to her anymore. Once, when she was a baby, and she couldn't settle down to sleep, I sang her "The Weight" by The Band. In the moment, I substituted her name for Annie, the woman named throughout the song. The Load was taken off Hannah, it was put Right On Me, and Hannah fell asleep that night. Maybe she enjoyed my rendition, maybe she like hearing her own name over and over again, or maybe she was caught off-guard by the well-meaning atonality that is my singing voice. Whatever it was, it worked.

I've always wanted to have a similarly special and effective song for Zoe. Since I'd wound up with a song for Hannah that I also happen to love, I had the same standards for Zoe. Or to more accurately rephrase that, I wanted a song that she loved that also properly represented my musical tastes. I tried many, many selections --  some Neil Young here, some Wilco there. It was never clear what worked. Most nights, she remained upset, awake, and at the mercy of the flashing synapses in her brain. I even serenaded her with a little "Mr. Brownstone" when I wanted to tease her for getting up Around Whenever, which she did all the time, at different times (it's only recently that she's been able to get up somewhat On Time). But because of Rett, she can't tell me what she likes. She can't make verbal requests; it's guesswork. She can look at me tenderly to say she likes what I'm singing at that particular moment, but she could be silently applauding the vocals, the song selection, or just the effort. The next night, the same song could be met with anguished screams and squirming, all depending on what Rett Syndrome decides to do to my audience's nervous system at the moment. It won't even let us share something so simple as the same favorite song on a nightly basis.

I have one song, of all the ones I've tried over the years, that I return to the most on those nights I need to calm Zoe down. It's not a perfect song for our relationship, but I love it, it makes me think of her, and not many people know it. It's called "Easy Hearts" by Whiskeytown, from the album they never quite finished before Ryan Adams went solo. If you look up the lyrics, you'll see a glimpse here and there of why it makes me think of Zoe, but it's not a perfect, literal translation of our shared experiences. There are really only a few lines that are even a little relevant. It's an imperfect song that, for me, represents an imperfect relationship. And when Hannah asked me the other night in the bath to sing something for Zoe, she assumed Zoe and I didn't have a special song. I had to tell Hannah, we sort of do, and it's called "Easy Hearts". I didn't sing it for Hannah, I didn't play the song for her later, I just told her the name of it.

A few nights after that, Hannah showed me something she'd written in her journal -- her own version of "Easy Hearts", also a representation of her relationship with Zoe, but far more perfect than I could have hoped for.

  Easy Hearts, going to sleep
Must be sure you are the one I love
[Throughout] my heart
I love Easy Hearts
I love you
I don't make you be me

Thursday, April 18, 2013

Wait, you have a NOOK...

...I had no idea. That's adorable. I'm assuming it looks sort of like a Kindle, an iPad, or a tiny computer -- I just haven't seen one on the train before. Anyway, you can find the link for it on the right. Please download it, all the while, feeling free to share the link and post reviews.

Saturday, April 13, 2013

E-Book is Live!

The essay about our experiences with Zoe is officially published on Amazon and available for purchase. It's our pleasure to share it with everyone who hasn't already read it. More importantly, we want to spread awareness about Rett Syndrome, and if we can raise a little money to help Zoe and the thousands of other girls out there like her, we have to do it. Your interest in this cause, in Zoe, and in her friends can bring the Rett research community ever closer to making this a winnable battle. Click the link just to the right to find the published version of the essay - thanks in advance for your support.