little seal, little star

Twinkle, twinkle, little star, How I wonder what you are. Up above the world so high, Like a diamond in the sky.

When the blazing sun is gone, When he nothing shines upon, Then you show your little light, Twinkle, twinkle, all the night.

Then the traveller in the dark, Thanks you for your tiny spark, He could not see which way to go, If you did not twinkle so.

from The Star, by Jane Taylor

My heart clamps in a vice grip. I feel I can barely breathe. My lids hang heavy over my eyes ... my sorry, sunken eyes. Every step I take feels empty, fatigued, worthless. I learned Friday that a woman I’ve grown to love—a friend of a friend—lost her little boy Ronan, her little seal, who I’ve also grown to love. Ronan wasn't yet three.

The day before he passed, Valentines Day, we had been driving to Boston to take our nine-year-old boy, Calvin, to see his neurologist where we'd talk about seizures and drugs and his recent weight loss. For whatever reason, while gazing out the windows at winter, I found my thoughts drifting to the Sandy Hook children who’d been gunned down back in December. My mind lingered with them, with the images of their fresh faces, dimpled cheeks and chins, little arms and sweet, toothy smiles. I found it hard not to imagine, too, those perfect, pure, supple bodies gone from this world, out of their parent's longing, loving reach. Later, after I’d remembered them in my blog, I wept as I pulled their faces up on my screen and realized it was the two-month anniversary of their massacre, this Valentines Day chock-full of blood-red hearts, foil-wrapped candies and little handmade cards boasting crayon Xs and Os and I love yous that their parents and friends never received from them.

The Sandy Hook murders have changed me, or maybe it’s Calvin’s improved behavior and overall reduction of seizures, or my recent, though relative, catching up on sleep. More likely it’s a combination of everything, that of late I’ve got more of a capacity for patience and loving, for overlooking the irksome, manic behavior of my kid, for submitting to his frenzied lust for hugs that sometimes hurt. After all, he’s so pure, his flesh so soft and spongy, his smile so—dare I say—heavenly, though if there is any semblance of heaven or hell no doubt in my mind they both exist right here on earth.

The next day I sent my sweet, skinny, snotty-nosed kid off to school, the two of us precariously skating across the crusty lake of ice that has become our driveway. “Bye Calvin, I love you!” I said, as I do every morning after praising his improving assisted effort climbing up the bus's steps, and then I kissed him goodbye. As his aide buckled him in, Calvin patted the window, as he always does, appearing as though he is waving to me, but I know that he is not, indeed wonder if he ever will. But in my mind I imagine the gesture to be true in an effort to mitigate my heartache.

Inside, I fixed a bowl of oatmeal with blueberries, then opened my laptop looking for some pearl of knowledge or art or beauty. Then I saw the post about Ronan, and my heart seized with the words his mother wrote:

Thanks, everyone, for the well wishes. Ronan died early this morning. In lieu of flowers or cards, please make a donation to the NTSAD—www.ntsad.org—in honor of Ronan as well as all the other children and their parents who have suffered from and continue to live with this disease.

The gut-punch sucked the air out of my lungs as I sat frozen reading her words over and over wishing it weren’t true, while at the same time relieved that Ronan was rid of any suffering he might have endured. Then I felt anguished and vexed that this mother has been robbed of the warmth and loving human touch of her most beloved, a touch that I have—regrettably—at times taken for granted. I wept into soggy blueberries and oats thinking of Tay-Sachs disease, which—with no exceptions—snatches little children like Ronan from their parents, and at such a tender age. This day had been coming for a long time, I knew it, could tell by Emily's posts and recent photos of Ronan’s gorgeous face in which—perhaps because of its slenderness—I could begin to see Calvin’s face. But one can never be prepared for this kind of news—the news of a child's death. I believe no imagery or prayer or drug or therapy or love or alcohol can truly assuage the grief. No God spares these children, no treatment halts its advance, no doctor cures it, no miracle saves these precious lives.

But the writing? Perhaps (and I hope with every fiber of my being) Emily's journey toward her son's death has somehow been soothed by writing, by tinkering with hard words, images and truths, by typing black letters that spell out loss, by wrestling with feelings as dark as ink and, too, blindingly brilliant, by moving through the thick, sometimes suffocating stuff of grief in hopes of swimming out the other side. I know it to be true for me. I remember one of my dearest friends, Lidia, telling me, after her daughter was stillborn, that the thing that saved her was her writing—literally saved her life. I have no doubt that it did. And like Lidia, Emily poured herself into a book, The Still Point of the Turning World, which, I believe, explores the journey with her dying son.

Twinkle, twinkle, little seal, little star, I think, and remember how on starry nights, well after midnight, I look out my window and see Orion, who I’d first fantasized as watching over Calvin and wrestling millions of little children’s seizures to the ground. But, at some point last year, in my mind Orion became Ronan’s Orion, cradling him in the night sky. And now, to sate my own sorrow, every time I see the unmistakable constellation high amongst a dusting of stars or hanging low in the western sky grazing the tops of trees, I think of Ronan. I think of the boy who touched a million hearts, a boy I never met whose life was too short and fleeting though more pure, powerful and selfless than some who’ll live on for decades. And, I’ll think of his mother as Venus, the Goddess of Love and indeed a most brilliant star to behold. She’s within arms reach of Ronan and his Orion. There they are, together, twinkling in the night sky like some dazzling brooch for the rest of us to cherish and keep in our hearts tonight, tomorrow night and forever.

Ronan Louis, photo by Jennifer Pastiloff