Skip to main content

For Megan



Two years ago today, time went off the tracks and my worst fears materialized ... the worst possible thing that could happen, happened ... and my daughter, Megan, in an instant, stopped breathing and died.  And yet two years ago today she was also still alive.  She was sleeping in that morning, on Christmas break from high school, when I left for work, so I didn't give her a kiss on the cheek like I usually did on my way out the door.  I didn't say goodbye.  I left home for work that morning living the life I'd always known, a good life, and returned home that night to utter desolation. To ruins.  Her tragic death, at times, even now exactly two years removed from it, still feels like only yesterday—and yet a yesterday a lifetime ago.  How can forever still feel so close?

Heedless of Megan's absence, time passes.  Time waits for no one is a brutal surreal truth.  Phillip K. Dick called this paradox of time's passage in our perceptions TIME OUT of JOINTthe title of his early, 1959, novel. What did he know that we don't about time? T.S. Eliot, in BURNT NORTON, knew that Time present and time past / Are both perhaps present in time future, / And time future contained in time past.

Marcel Proust knew as well as anyone that remembrance transcends time, and so today I'd like to follow his lead (albeit in far fewer words) and remember Megan, my beloved girl, so that her memory too may somehow transcend time.  With that objective in mind, I've collected below, in fragments, any spinning blur of a photograph or recollection I could find in my old book reviews and other writings.  Click on the links below and, somewhere, in something obscure I wrote about this under-appreciated book or that one, Megan is there—forever—I hope.

Megan was born, barely alive, on August 11, 1998, at 6:31pm. Within minutes of her birth (I can still hear that goopy, suction sound, when she was hurriedly scooped out in an emergency c-section), she was practically hardwired into an I.V. pole and monitor.  Lying un-conscious in that little bed, she looked like she was some futuristic robobaby.  She couldn't cry, even had she been conscious, since she'd been immediately intubated after birth. My wife and I cried in her stead, watching her fight for her life from the get-go. Megan's left wrist had been slashed to insert an "art" line to monitor the rhythms and inner workings of her odd heart.  Her skin was mottled blue, meaning she was "cyanotic".  Her blood pressure and "sat" readings zig zagged all over the place on her monitor.  Our eyes, when not on Megs, were glued to that monitor flashing numbers in multiple colors nonstop.  The "art" (or arterial) line provided NICU staff with instant readouts of her malfunctioning heart.  Had there been a print out in real time monitoring the wild, second-by-second, fluctuations in her blood pressure, I imagine it may have appeared on paper as if her heart were having an earthquake.  One that went on hour after hour, day after day, for weeks.

Congenital heart defects are common among babies like Megan born with Down syndrome. Megan had a doozy of a heart defect: "tetralogy of Fallot".  I couldn't even begin to explain tetralogy of Fallot, even though the doctors did their best to explain it so we'd understand.  Her doctors huddled around her bed. One took us aside and advised my wife and I to prepare, to be ready, just in case—saying she wanted to be completely straight with us—that Megan might not make it, that we might not be taking our baby home.  I wrote "TET BABY" as a result of this intense experience and not from any exact memory of her fighting-for-her-life ordeal, for time then when all we could do was stand idly by, staring at "sats," was just this timeless, mind bludgeoning blur, especially when she'd "crash" and have to be "bagged"; but rather, I wrote it from a photograph of her lying immobilized beneath that riot of tubes and wires that I found thirteen years later, when I was looking for something else in my desk.

Those early days with Megs were fraught with fear.  She might not make it.  What else could go wrong?  I touched more on those early days in what was one of the earliest books I tried my hand at reviewing, BABIES with DOWN SYNDROME: A New Parent's Guide by Karen Stray Gundersen. Over the last five years of Megan's life, her
name came up fairly frequently within the con-text of the plots or cir- cumstances in the life of whichever character in whatever book I happened to be reading and reviewing at the time.  And writing about Megan was both a joy and catharsis for me; as it was, for instance, in my review of DISABILITYLAND by Dr. Alan Brightman, in which I vented my frustrations and anger over the ever ongoing challenges we faced in advocating for our daughter's right to F.A.P.E. ("Free and Appropriate Public Education") under I.D.E.A. ("Individuals with Disabilities Education Act, 1982") within a largely broken public school system and administrative bureaucracy that prioritizes maintaining their six-figure salaries at the expense of providing appropriate levels of federally legislated services such as speech therapy to its special needs students. Beyond catharsis, reading and reviewing great books could (and still can) be like sitting down for dinner with a dear friend and experiencing that unbreakable
bond of commiseration: times of reconnection that can inspire re-newed hope for the weary and dis-heartened. I experienced all that upon reading and then reviewing LOVE YOU to PIECES: Creative Writers on Raising a CHILD with SPECIAL NEEDS, a brilliant anthology of short stories, novel excerpts, and poems, edited by the expatriate novelist Suzanne Kamata, who lives in Japan.  Love You to Pieces is an essential book for anyone who lives or works  alongside human beings with special needs.  One of the contributors in Love You to Pieces, Hannah Holborn, having read my review, contacted me on LibraryThing and later sent me a signed and inscribed copy of her first story collection FIERCE: Stories and a Novella.

cover by Lindsey Spinks
Human beings with special needs are often far more perceptive, far more there, far more aware and present in the moment than their more "typical" peers probably think or could possibly imagine. Perhaps even more than their parents could possibly imagine.  I dealt briefly with this facet of Megan's interior life in my review of The DIVING BELL and the BUTTERFLY by Jean Dominique-Bauby, a profound and moving account of a physically and psychologically afflicted man's last days before succumbing to "locked-in syndrome".  Megan, likewise, due to her limited ability to communicate verbally, was "locked inside" herself.

I remember well the moment when I caught my first glimpse of how much more was going on inside Megan than I'd ever previously realized.  I wrote about this dawning realization in an online group that's been talking books and literature together for over six years. And so here I'll quote what I wrote in its (slightly edited) entirety:

I came to James Branch Cabell late, through my online pal, Crypto-Willobie's, unmatched passion for the man, in 2012.   The first book of Cabell's I bought was the Dover, pricier edition, of JURGEN, with the Frank C. Pape illustrations, while on our summer vacation that year down the coast in Carlsbad.

Found it at a great local shop, Farenheit 451 Books. And I began reading it that summer on vacation: that idyllic summer vacation right on the sand in Carlsbad that would turn out to be the next to last summer vacation we'd have with our daughter, Megan, who would pass away suddenly and unexpectedly from cardiac arrest the result of a pulmonary embolism just a few days after Christmas, 2013.

During that vacation I really connected with Megan for the first time.  I don't mean to suggest we were disconnected before that, but due mostly to her autism (which only exacerbated the verbal communication challenges she already faced having Down syndrome), and my inability to see through all the tics and "special" personality quirks she presented, I had no clue that there was a deeper level of connection awaiting us. But
there was, and we bonded beautifully that summer week on the beach in a way that was magical and hard to describe exactly. For the first time that summer, rather than get on her to "come on, Megan!" and wade out farther with the rest of us into the ocean; "you can do it, Megs!" (as she was invariably leery of doing because of her hypo-tonia and sensory issues that caused in her an understandable disequilibrium whenever she stood on such unsteady ground), I backed off and met her on the beach right where she was at.

That summer — and why I don't know why (must have been intuitive) — I decided to just sit beside her, as she sat, on our butts with our legs aimed at the horizon in the damp, compacted sand of low tide, while the small curls and constant surges of seawater splashed into us, knocking us over, these warm sudsy edges of the ocean sizzling all around us. Back on our butts "the sea would slide back" (as Sylvia Plath once poetically put it), and we'd look at each other and laugh, and wait, all giddy and giggly in anticipation of the next wave. During one of those interludes that summer at the beach, waiting for the shore pound to bowl us over again so we could laugh till it hurt together again, I looked into her eyes and she looked into mine, and I saw that I was meeting a deeper part of Megan I'd never met before for the first time. We spent hours of almost every day during that idyllic vacation on the sand like that, becoming as one with the rhythms of the waves as we'd become with one another.  Megan was already thirteen that summer (and only had a little over two years left to live) and yet in a very fundamental way I realized — I felt it, just knew it — that I was meeting my daughter for the first time. And we were so close thereafter, tight buds, until the day she died.  And now, of course, though she's gone, Megan still exists in that faraway realm of James Branch Cabell's Jurgen, somewhere "between the dawn and the sunrise".

About a year before Megan died, I reviewed PLACE LAST SEEN, the debut novel — and so far only novel (sure wish she'd write another one) — by Charlotte McGuin Freeman.  In her mesmerizing novel, a girl with Down syndrome named Maggie (we often called Megan "Meggie") goes missing on a family day hike in late autumn in the Sierra Nevada's Desolation Wilderness.  The outcome for Maggie and her family is, you could say, sheer desolation.  Sheer devastation.  Freeman, unaware of my daughter's passing, contacted me here at the blog not long after her death to say thanks for the review. Her comments follow my review.

The day after Megan died I posted "HOPE," (Megan's middle name) which in retrospect was completely for myself — and the commitment I was then making to myself and, perhaps more importantly, to my wife and family, that together, no matter how excruciating and permanent our grief would be (and only one day removed from Megan's death I really had no clue just how cruel and excruciating that first year would be) we would nevertheless figure out a way together to survive our shared ordeal. And we did, and continue doing so.

A couple weeks later, GHOST RIDER: Travels on the Healing Road by Neil Peart gave me some great advice on surviving the death of a child.  God forbid another person out there reading this loses — or has already lost — their child. Whether I know you or not, whether it seems odd to you or not that I'd say it—me, some stranger in cyberspace you do not know—do know, regardless, that I'm genuinely sorry for your loss. No one wants to be in our club, so those of us with the misfortune of being in it share an uncommon but universal bond.  Only recently, the poet and author Terese Svoboda was kind enough to leave a message on my blog after I'd briefly mentioned Megan in a post — On Discovering Lola Ridge while visiting Terese Svoboda's website — about Svoboda's soon-to-be published biography, ANYTHING THAT BURNS YOU: A Portrait of LOLA RIDGE, Radical Poet, that I'm looking forward to reading once it's released by Schaffner Press on February 2, 2016, and hope many other people will likewise do so. Lola Ridge's poem MOTHER explains for me, better than I can, the experience of attempting to describe in this post what it's like remembering Megan, and so I'm sharing it here again:


Your love was like moonlight
turning harsh things to beauty,
so that little wry souls
reflecting each other obliquely
as in cracked mirrors...
beheld in your luminous spirit
their own reflection,
transfigured as in a shining stream,
and loved you for what they are not.

You are less an image in my mind
than a luster
I see you in gleams
pale as star-light on a gray wall...
evanescent as the reflection of a white swan
shimmering in broken water.

Megan was beyond awesome. Beyond words. I was beyond lucky to be her Dad.

Even though she's been gone for two years now, I still find myself saying — as I've said everyday since she abruptly left, and as I suspect I'll be saying everyday that I have left — So long sweet girl. . . .



.


.


.


.


.


.


.


.


.


.


.


.


.


.


.





.


.


.


.


.


.


.


.


.


.


.


.



Comments

Terese Svoboda said…
Thank you for this very moving post.
Séamus Duggan said…
Beautiful and devastating. The closest I have come to something like this is from the other side, losing a parent while I was still a child, or at a devastating moonlit wake for some friends teenage son who had passed in his sleep. it was like the night was grieving. I have never been so aware of my breath.
I have an autistic son and had a similar bonding experience at the beach. I later read about the importance of water for bonding.

Enrique Freeque said…
"It was like the night was grieving" — that's a powerful image there, Seamus. Makes me happy to hear of your own bonding at the beach w/your son w/autism. I didn't know that about water and bonding, but feel like I should have; I mean, hey, if it was good for bonding in the womb, right, might still be good outside it!

Thanks for your thoughtful comment. Means a lot.

Popular posts from this blog

A Brief introduction to the Novels of Khwaja Ahmad Abbas

The majority of the material for this post is taken from Contemporary Novelists, 3rd Ed., Edited by James Vinson, St. Martin's Press, New York, 1982

Khwaja Ahmad Abbas (1914-1987)


There's only eight books of K.A. Abbas cataloged in LibraryThing (five or six different works).  He's virtually forgotten in the United States, though still revered in Indian literary circles.

On highbrow literary critics in India, Abbas said they "have sometimes sneeringly labelled my novels and short stories as 'mere journalese'. The fact that most of them are inspired by aspects of the contemporary historical reality, as sometimes chronicled in the press, is sufficient to put them beyond the pale of literary creation.

"I have no quarrel with the critics. Maybe I am an unredeemed journalist and reporter, masquerading as a writer of fiction. But I have always believed that while the inner life of man undoubtedly is, and should be, the primary concern of literature, thi…

Guest Post: Farewell to Manzanar reviewed by Mac McCaskill

"Mountain now loosens rivulets of tears.
Washed stones, forgotten clearing."
 —Jeanne Wakatsuki Houston




When my father was a boy, he learned that he’d been adopted by the man whom he’d thought was his father. Digging through a dusty trunk in his attic, he found legal documents that gave him the name he wore and the father he knew, but also uncovering an origin that had been hidden from him.

His mother was, by all accounts, a volatile woman — her siblings called her “the hornet” because her sting was quick and painful. She was a hard woman, and reticent to either acknowledge or divulge anything about his biological father. Over the years, he eventually learned from other relatives that she met Mr. Black — it was his name, but also a metaphor for much more — in a late 1920’s dance hall. He left her pregnant, taking whatever money he could get his hands hand on when he went.

Late in his life, after his mother died, my dad started quizzing other relatives for information about Mr…

Guest Post: Play It As It Lays reviewed by Joseph Brinson

You know, I began a try at this review writing about Iago in Othello and the nature of evil.

And about ennui and apathy.

And that the answer is: nothing.

And how I felt deep empathy for Maria.

And then I deleted it all.

This is my review: This novel depressed the fuck out of me.

That, and giving it four stars, should sum it up.






















Joseph Brinson (a.k.a., "Quixada"), a poet and a longtime online pal, made me fucking howl when I first read his deadpanned piece on Play It As It Lays years and years ago.  Yes, it is brief — yet is playfully, skillfully thorough. His homage still slays me today.