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

ronan

I've fallen in love with a woman named Emily and her son Ronan, neither of whom I've met. They are close friends with one of my good friends. My heart was crushed today to hear that when I was feeding Calvin this morning Ronan was taking his last breath. He died peacefully amongst friends and family. I'm not sure he was even three years old, but during his short life he and his mother touched thousands of people's hearts. If you can, please donate to fight Tay-Sach's disease at http://www.ntsad.org/

photo by Jennifer Pastiloff

ronan's orion

Our boy Calvin has a habit of waking up at 4:30 in the morning. I usually find him uncovered and rocking, rubbing his head in his palms as if he has a headache, which, because of the antiepileptic drugs, he probably does. I unhitch the netted safety canopy tented over his bed, step up on the little wooden stool, reach in to drag him up onto his pillow and cover him again. If he wants water, I give him some from his sippy-cup, my left hand cradling his sleepy head. Then I re-secure the netting and shuffle off to the bathroom before heading back to bed, and by then he is already fast asleep.

On crisp, clear winter nights I can see Orion out the bathroom window. He appears strong and fearless in the sky and I fantasize that somehow he is watching over Calvin. The other night Orion was surrounded by a billion visible stars and I imagined them each as points of light representing seizures that little kids are having all over the world, imagined Orion trying to wrestle those seizures to the ground. Weird, I know, but that's where my mind goes—sometimes often.

The other day, while I was doing a quick Internet browse, I saw a status update by my Facebook friend, Emily. She wrote about how her two-and-a-half-year-old son Ronan, who is dying from Tay Sachs disease and who has slipped into near total paralysis, blindness and had long ago developed seizures, can no longer swallow. She explained how he is now taking fluids and meds through an nasogastro tube, and his body is slowing down.

I watched an outpouring of love and support wash over the social media format, friends sending compassionate messages for this woman and her beautiful child. One message simply read, "Godspeed, Ronan." I cried as I read scores of others from people whose love and admiration for Emily and her Ronan are palpable.

I went to sleep last night—as I've done so many times—with the image in my mind of Ronan being carried—embraced—by Orion, who whisks him through the night sky, between the countless stars, through gossamer clouds to touch the gleaming moon with a kiss to his forehead—smooth, fair and tender. I’ll dream of Ronan as his celestial giant watches over him and his mother in their sweet, peaceful slumber. And I will dream this tonight, tomorrow night and the next, and it won't be the first time. I’ll hope to see Orion shining in the night sky above our home, the same velvety sky studded with diamonds that in reality are beautiful shining stars upon which a million wishes are being made for little Ronan.

Thought provoking works by Emily Rapp:

The Still Point of the Turning World 
Poster Child
Someone to Hold Me
Notes from a Dragon Mom
Our Little Seal 

To give to Tay-Sachs research: http://www.ntsad.org/
 

Emily and Ronan, photo by Anne Staveley

names and faces

It’s been a while since I’ve woken up to the horrific sound of Calvin having a seizure. The shriek is hard to describe, and isn’t always the same from one seizure to the next except for the fact that it scares the holy crap out of me and I never—ever—get used to it. The sound he makes—that the seizure makes—is somewhere between a desperate cry for help and a blood-curdling scream. At one-thirty this morning, in Michael’s absence, that sound startled me awake. I threw off the covers and ran. Peering into Calvin’s bed through the netted safety canopy, my heart a steely piston knocking in my chest, I could see that he was still sleeping soundly when a little chortle escaped his lips. He had simply been dreaming.

Still, I found it difficult to fall back to sleep. Curled up in a ball I gazed out at the black pines silhouetted against a stone-gray sky. I breathed shallowly so that I could listen for Calvin, for the swooshing of his sheets, the telltale clicking and smacking of a partial seizure rolling into a tonic-clonic one—the kind I fear most—though I detected nothing but his own shallow breaths.

I started thinking about all of the children I know who suffer repeated seizures: of little Leland so soft and mild who, since a mosquito bite infected him with meningitis when he was just twelve days old, has been having several dozen seizures nearly every day; of my friend Emily’s beloved Ronan who is seizing all day and all night because of the wrath of Tay-Sachs disease; of Margot, with her dark lashes and curls whose seizures ebb and flow from day to day but never go away; of beautiful Savannah and Sophie, both in their late teens who—for years now—have been drowning in a slough of drugs and yet have had tens of thousands of seizures with no end in sight; of Lisbeth and Olivia and Sammy and Jack and Matthew and Luella and Elijah and Penny and Franny and Lily and Zach. I thought of Kevin, who drowned at the tender age of sixteen because of a seizure, and of the young sons who’ve died from SUDEP and of the countless other children whose parents have reached out and told me of the suffering their kids have needlessly endured at the hand of this malady called epilepsy. I know these parents live with the same nightmares—many much worse—as we do.

I fell asleep tumbling so many names and faces in dark circles and loops through my mind. And I awoke sleeping next to Calvin in his bed keenly aware that today, as in every other, I must tell the world about the scourge of epilepsy, simply because I can.

Please share.
Give to cure epilepsy: http://www.calvinscure.com

Warning: the video below may be difficult for some to watch, though I encourage you to do so, so that you better understand the plight of epilepsy on our children.

grace

I want to send my friend Emily and her son Ronan all the super mojo, good vibes and virtual love possible for the struggles they both face—struggles that no child or parent should ever have to encounter. And so, in their honor, I am reposting the following piece:

A new friend, Emily, whom I’ve never met in person, has a two year old son named Ronan who was diagnosed with the regressive, terminal disease, Tay-Sachs, when he was just nine months old. From what she’s written, it seems he likely hasn’t got long to live. I think of her and Ronan daily, sometimes hourly, and check in on Facebook and her blog Little Seal, to steal glimpses of her beautiful boy and to immerse myself in the poignant words she writes about life with her precious son.

I sometimes read what others write in response to her blog posts. Most entries are compassionate and understanding, often written by parents of ill children. One reader posted this comment:

Jeremiah 29:11

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Not to harm you? I think. I bristle at the words, the false image they conjure in my mind while contemplating my own son Calvin’s tragic health and developmental difficulties. I wonder if these words can possibly soothe her or whether they simply cut her to the bone—like they often do to me—grind salt into a gaping wound that she and her boy have inexplicably sustained. That’s how I still feel sometimes when well-wishers ignorantly toss their belief systems in my face—like a bitter pie—thinking somehow they know better than I the cause and/or destiny of my sick child, thinking their words will serve to make me feel better. The only sense I can make of comments like that—which I know are meant to console—is that they mostly serve to comfort the individual offering them, in an effort to make some sense of the incomprehensible tragedy of a sick and dying child. I'm not saying that the intention is wrong, but perhaps better kept to one's self.

When I tell people about Calvin and our struggles, about life's uncertainties raising a child whose brain isn’t complete and who suffers repeated seizures for which he must ingest copious drugs that have yet to succeed at stopping them, some tell me it's God's will and others tell me that I am brave.

Brave? No. Scared shitless? Yes. At times literally shaking in my boots. Bravery has little to do with being the mother of a chronically ill child, who at times seems to live on a thread of existence. We just do what we do, move through one moment to the next hoping that will make the future seem less daunting, less all-consuming, less suffocating, less hopeless. What else can we do but indefatigably love and care for and cherish our children as if there is no tomorrow—because maybe there won't be? It’s not called bravery; it’s called motherhood. And yes, it's likely there are a select few who'd abandon the challenge of caring for kids like ours, abandon the grief, the strife—their children—but perhaps not because they aren't brave but because they aren't strong. They aren't Dragon Moms, to use the term Emily so effectively coined, the term that I think perfectly describes the way I often feel.

When I read Emily’s words and view the muted, acid-tinted, dreamlike photographs of her son, what I see is not a brave woman but one with the grace of ages. If I let my mind wander she appears as a barefoot nymph with blushing skin and shining rosegold locks, her body loosely draped in a simple gossamer gown, Ronan gently cradled in her arms—a pure embodiment of grace. I see her loving embrace of Ronan—the way she delicately supports her son’s head with slender fingers just at the back of his little bird neck, like I used to do with Calvin. I see grace in the way her gaze seems to linger on him as if it would never end. I see grace in her reply to a stranger’s ignorant, probing questions about her dying child. Hell, I know I'd even see grace in her bitterness, her bark and her bite, her firebreathing struggle, in her grief, sorrow, despair, anger, self-pity. Because grace is honest and true, grace is unapologetic, grace cannot be put on.

And so we, mothers of these innocents who suffer, move forward one step at a time, perhaps gracefully, but only hoping to be brave.

Originally published 11.02.11.

Please share.

Please join in the National Day of Hope for the National Tay-Sachs and Allied Diseases Alliance in honor of Ronan Louis 

Ronan

ronan’s orion

Our boy has a habit of waking up at 4:30 in the morning. I usually find him uncovered and rocking, rubbing his head in his palms. I unhitch the netted safety canopy tented over his bed, step up on the little wooden stool, reach in to drag him up onto his pillow and cover him again. If he wants some, I give him water from his sippy-cup, my left hand cradling his precious head. Then I re-secure the netting and shuffle off to the bathroom before heading back to bed.

On crisp, clear winter nights I can see Orion out the bathroom window. He appears strong and fearless in the sky and I fantasize that somehow he is watching over Calvin. The other night Orion was surrounded by a billion visible stars and I imagined them each as points of light representing seizures that little kids are having all over the world. Weird, I know, but that is where my thoughts go—sometimes often.

Last night, while I was doing a quick browse on Facebook I saw a status update by my friend Emily. She said:

Ronan needs your thoughts today, friends. Please send good vibes his way.

Ronan is her toddler (though sorrowfully he can’t toddle) who is dying from Tay-Sachs, a dreadful regressive genetic disorder. He has become blind, is mostly paralyzed and has begun having seizures, all symptoms that at some point in the not-too-distant future will be followed by his death.

I went to sleep last night with the image in my mind of little Ronan being carried—embraced—by Orion, who whisks him through the night sky, between the countless stars, through gossamer clouds to touch the gleaming moon with a kiss to his forehead—smooth, fair and tender. I’ll dream of Ronan as his celestial giant watches over him and his mother in their sweet, peaceful slumber. And I will dream this tonight, tomorrow night and the next. I’ll hope to see Orion shining in the sky above our home, the same velvety sky studded with diamonds that in reality are beautiful shining stars upon which a million wishes are being made for little Ronan.

To learn more about Ronan: http://www.ourlittleseal.wordpress.com/
To give to Tay-Sachs research: http://www.ntsad.org/

Ronan

daytime shadows

This low light of winter can turn a gray mood into black. The wind is sharp and bitter cold, cuts through to my skin, chaps my hands. Everything bears a pathetic hard-edged shadow that is both blindingly bright and dismal at the same time. This sun, which comes at me nearly horizontal in the sky, takes me down. I want to look away. It casts its long, suffering shadows that I know will take months to retreat. The ground is solid and unforgiving now, icy morning crystals frosting blades of grass soon to be obscenely covered in white.

I learned this morning that my new friend’s (she’s really the dear friend of a friend and someone I’ve never met before) twenty-one month old son, who is dying from Tay-Sachs disease, has started having seizures. When I read her words I felt a sharp jab in my heart, the familiar saline sting in my eyes. I know seizures, I thought, I hate them. I’m not sure when little Ronan’s seizures began, nor what they are like, nor how long they last. But perhaps, as sick as it sounds, all that is immaterial—doesn’t matter—because with Tay-Sachs, from what I know of it, seizures are simply the inevitable.

And then, shutting my eyes, I to try to conjure up the image of my friend holding her son through his seizures, like I’ve done with Calvin countless times, while at the same time shutting my eyes to try and blot out the image of my friend holding her son through his seizures.

I wish it were all just a terrible dream—these seizures—this grief, this gradual loss some of us experience with our children, albeit it in vastly different ways from each other. This daytime nightmare that follows us into sleep, with its hot merciless brilliance hurling us into darkness, is difficult, if not impossible, to escape. And so we sit with it. We must let it all become a part of us like smoke seeping into our lungs, radiation into our pores, cancer into our marrow, and we learn—somehow—to live with it. Because what else can we do but to die?

photo by Michael Kolster

grace

A new friend, Emily, whom I’ve never met in person, has an eighteen-month old son named Ronan who was diagnosed with the regressive, terminal disease, Tay-Sachs, when he was just nine months old. From what she’s written, it seems he likely hasn’t got long to live. I think of her and Ronan daily, sometimes hourly, and check in on Facebook and her blog Little Seal, to steal glimpses of her beautiful boy and to immerse myself in the poignant words she writes about life with her precious son.

I sometimes read what others write in response to her blog posts. Most entries are compassionate and understanding, often written by parents of ill children. One reader posted this comment:

Jeremiah 29:11

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Not to harm you? I think. I bristle at the words, the false image they conjure in my mind while contemplating my own son Calvin’s tragic health and developmental difficulties. I wonder if these words can possibly soothe her or whether they simply cut her to the bone—like they often do to me—grind salt into a gaping wound that she and her boy have inexplicably sustained. That’s how I still feel sometimes when well-wishers ignorantly toss their belief systems in my face—like a bitter pie—thinking somehow they know better than I the cause and/or destiny of my sick child, thinking their words will serve to make me feel better. The only sense I can make of comments like that—which I know are meant to console—is that they mostly serve to comfort the individual offering them, in an effort to make some sense of the incomprehensible tragedy of a sick and dying child. I'm not saying that the intention is wrong, but perhaps better kept to one's self.

When I tell people about Calvin and our struggles, about life's uncertainties raising a child whose brain isn’t complete and who suffers repeated seizures for which he must ingest copious drugs that have yet to succeed at stopping them, some tell me it's god's will and others tell me that I am brave.

Brave? No. Scared shitless? Yes. At times literally shaking in my boots. Bravery has little to do with being the mother of a chronically ill child, who at times seems to live on a thread of existence. We just do what we do, move through one moment to the next hoping that will make the future seem less daunting, less all-consuming, less suffocating, less hopeless. What else can we do but indefatigably love and care for and cherish our children as if there is no tomorrow—because maybe there won't be? It’s not called bravery; it’s called motherhood. And yes, it's likely there are a select few who'd abandon the challenge of caring for kids like ours, abandon the grief, the strife—their children—but perhaps not because they aren't brave but because they aren't strong. They aren't Dragon Moms, to use the term Emily so effectively coined, the term that I think perfectly describes the way I often feel.

When I read Emily’s words and view the muted, acid-tinted, dreamlike photographs of her son, what I see is not a brave woman but one with the grace of ages. If I let my mind wander she appears as a barefoot nymph with blushing skin and shining rosegold locks, her body loosely draped in a simple gossamer gown, Ronan gently cradled in her arms—a pure embodiment of grace. I see her loving embrace of Ronan—the way she delicately supports her son’s head with slender fingers just at the back of his little bird neck, like I used to do with Calvin. I see grace in the way her gaze seems to linger on him as if it would never end. I see grace in her reply to a stranger’s ignorant, probing questions about her dying child. Hell, I know I'd even see grace in her bitterness, her bark and her bite, her firebreathing struggle, in her grief, sorrow, despair, anger, self-pity. Because grace is honest and true, grace is unapologetic, grace cannot be put on.

And so we, mothers of these innocents who suffer, move forward one step at a time, perhaps gracefully, but only hoping to be brave.

In honor of epilepsy awareness month please share Calvin's Story. Help bring us one step close to a cure.

Ronan