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

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.

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.

Back Off -- I'm Just Visiting

Zoe was back in the hospital last month, an eventuality we'd managed to avoid this winter. After repeated bouts of pneumonia last year, (including an overnight stay, which happened to be exactly one year earlier) we'd avoided more of the same this winter. Possibly it was the mild weather, possibly it was the vest and nebulizer treatments that have become routine, but regardless, the poor kid who'd been through pneumonia, EEGs, EKGs, sleep studies, and swallow studies had stayed out of the hospital.

Until last month. But this hospital trip wasn't like the ones from last winter, with IV connections and multiple tests and setbacks.This time, she could come and go as she pleased. She wasn't hooked up to any machinery, and she wasn't a tiny island of a kid in a vast hospital bed, way too big for her. This time, she was in the hospital to welcome her little brother to the world.

For the entire week that her mother and brother were in the hospital, Zoe visited them every day. She would sit with the two of them, the baby resting on her lap. The only attention she got from doctors or nurses was the repeated question "Are you a big sister now?", which she answered each time with a contented smile. We have never seen such peaceful expressions on her face, or such pride. Then again, she has never had someone to take care of -- it's always been the other way around.

The rest of us have taken the baby's arrival cavalierly. Granted, our lives have changed a little from before. There's one more person to feed, to hold, to ease into sleep. But for my wife and I, aside from the adjustment of changing diapers for a boy, and the attendant equipment, nothing has really changed for us. His oldest sister is used to helping, given Zoe's condition especially, and she does so in her own way. She didn't get too excited when her sister came along just over four years ago, so why should she start now? The only one who's been completely changed by this experience is Zoe.

To answer the question, from those doctors and nurses in the hospital, yes, she is a big sister now. And while she can't talk to her brother yet and can't do everything she wants, she has an emotional responsibility she didn't have before. Nothing for her will be the same again. And that was what struck me most about her joyous expression as we wheeled in and out of the hospital doors that week. She was finally getting a chance to not just be a big kid, but to be a little closer to having the freedom of being just another kid.

What is Rett Syndrome?

"We were forced to become expert in something that we never knew about, never wanted to know about, and something we will never fully understand. We learned a great deal about genetics very quickly, and each day we dug deeper into Zoe’s cellular mysteries. Rett syndrome is a disorder affecting the brain; it prevents the brains of girls like Zoe from telling their bodies what to do and when to do it, a symptom called apraxia.

The condition is the most physically disabling of all disorders on the autism spectrum. Quite simply, they know what they want to do, be it playing, running, singing, whatever they see kids doing in school, stores, or the neighbors’ yards. Their bodies won’t let them.

This is a result of a random mutation on the MECP2 gene, the Rett syndrome gene. Each cell in a normal female body silences one of its two X chromosomes. Girls with Rett have a healthy MECP2 gene on one of their X chromosomes and a mutated, stubborn version of the gene on their other X chromosome. The variances in girls’ symptoms are a result of the random nature in which the chromosomes are silenced; there is no way to predict which X chromosome, healthy or unhealthy, the body will elect to silence.

One of the hallmark symptoms of Rett is drastic regression in motor skills and abilities. We were lucky to a degree. Unlike many families, we didn’t have to watch Zoe develop on schedule, walking and talking like her sister and other kids, only to have her lose those skills around the age of two. That scenario is sadly far more common.

The affected neurons, don’t die, unlike in other neuro-degenerative disorders, like Parkinson’s. They can be reactivated; in fact, a scientist named Adrian Bird was able to do this in mice. He was able to temporarily disable one of the genes in them, and in that state, they exhibited all the symptoms as a typical girl with Rett. When the gene was reactivated, over the period of weeks, the mice returned to their normal physical state. It is possible to extend that treatment to these girls."

The preceding quote is an excerpt from an essay I wrote about our experiences with our daughter Zoe and adapting our lives to her neurological condition, Rett Syndrome. The entire essay will be available in the Kindle Store in February 2013. Proceeds will be donated to research for a cure for Rett Syndrome.