Free The Still Point Of The Turning World by Emily Rapp

I wanted to go back in time and appear as a ghost who miraculously lights a candle in the middle of the night at Mary’s bedside, or show up in one of her waking dreams bearing a magic wand, like that luminous fairy queen in
The Lord of the Rings
who gives Frodo a special little stick to use “when all other lights have gone out.” Or maybe I’d just play John Lennon’s “Imagine” on a constant loop from an invisible sound system, the song that was playing as I sat writing by my own fire in those early months of 2011, knowing that someday I would be sitting by the same fire but I would not be the same person, and I would no longer be a mother.
    It was difficult—maybe even impossible—for me to imagine that Ronan was not, in his own way, perfect, if only because he was living the only way he could. There was a great deal of perfection—and rare innocence—in that. He would never look like the other kids; he would be alone at the free throw lane in almost every respect. “I don’t want to take him to the children’s play area while I do yoga because he can’t
play,
” Rick said to me one afternoon, his voice cracking. “What if he just sits in the corner by himself? If he falls over he can’t push himself back up.” Neither one of us could stand the thought. There were so many things from which I had no way of protecting my child, thoughts that put me right at the thinning edge of sanity. But one thing I knew: Ronan would not, like Frankenstein’s monster, be sitting out in the middle of a dark forest, lonely, perched on a log and wishing somebody loved him. Not my boy.
    Ronan was mine. Mine and Rick’s. Of course we would have done anything to help him, to save him, but we didn’t want him to be another, different baby. We couldn’t imagine not having had a part in creating him, or not having known him, or loved him so fiercely. We weren’t running away from him or rushing out of any rooms. We stayed put. And we never wanted him to be perfect. We wanted him to
live.
    I’d never experience with Ronan so much of what I’d been looking forward to as a mom: marveling as he acquired language, teaching him to ski, traveling with him to all of the wonderful places I have lived, helping him learn how to be a unique person in this mad world. He missed all his milestones on the pediatrician’s developmental chart; there were no more boxes to tick or leave blank. I was angry about the unfairness of that, but I also knew this: he would never experience shame, regret, fear, self-loathing, worry, anxiety, or stress—all products of an ambitious search for happiness or recognition or whatever else we think will save us, things Dr. Frankenstein thought would save him and that led to his heartbreak and demise, things he thought would free him but only bound him more tightly. Ronan would never wish himself to be different. That state of existence was so far outside my own experience that I could scarcely imagine what it might be like. My terminally ill son was absolutely wondrous to me in this way, and there was no box to document this amazement, this respect, this difficult lesson.
    Americans love the idea of “the pursuit of happiness.” We love that this mandate is written into our fabric as a people. Ronan taught me that this myth has outlived its usefulness, if indeed it ever had any. Or else we’ve misread it, because this notion of ambition has been a problem, literally, for thousands of years.
    In the Babylonian myth of Atrahasis, the earliest recorded version of the Flood story and a precursor to the biblical story of Noah and his famous ark, the gods get fed up with lifting stones and digging out rivers. They want rest. They demand that other creatures do some of the work so they can hang out and be immortal and engage in smiting and other violent and more entertaining pursuits. They stage a revolt, and it is eventually decided that new creatures—humans, made from blood and dirt—will be created to