A Portrait Of A Mother As Hero

Something - someone - that I haven't written about it in a long time: my nephew, Tanner. He's dying. He has an aggressive form of muscular dystrophy - Duchenne's muscular dystrophy - and it's become painfully clear over the past few months that his is a more aggressive form of an already aggressive terminal disorder, which is why I haven't written about it in so long. It's too painful. He can no longer walk, at all. The muscles in his legs have deteriorated to the point where they are no longer able to carry him forward. His lungs and his heart are going to fail him in this way, too, but there's no wheelchair for the lungs or the heart.

He's only eight years old. This is all happening much too quickly. For us, for him.

His mother is my sister, my only sibling. If you'd asked me, say, twenty years ago whether I'd admire her as grown-up, I would have stuck out my tongue at you and called you stupid. I would have said no, because she's a stupid stupid-head and she took my favorite top and she's going to be a stupid-head forever. Or something like that. We loved each other, but we rolled like that.

My sister, formerly-known-as-stupid-head, is now the mother of three children, one of which a dying child, and I don't know how she does it. Like, head-shaking, utterly-baffled, completely-beyond-me, oh-GOD-pass-me-another-drink don't know how she does it. I don't think that she knows, either. But she does it, somehow. She keeps on doing it, because it's the only choice she has. She can't give up. She has to keep going, for Tanner and his brother and his sister, and for herself.

She runs. She runs faster and harder and longer than anyone I know. She keeps running long after others would have stopped, long after other legs would have buckled, long after other hearts would have near burst. She runs for Tanner, to raise awareness of his condition, to raise money for research, to raise his name upon a sweaty t-shirt so that the world can see that there's a kid called Tanner out there and he's special and he's loved and please never forget kids like Tanner.

She runs because Tanner can't. She runs because he's running out of time, and because, in the face of being able to doing nothing to stop or slow the passage of that time, it helps, a little, to run headlong into the wind and speed through time and make time her bitch, if only for the hours and minutes it takes to run a marathon. To feel her own legs weaken and her own heart and lungs strain to bursting in their confrontation with time and speed and the inexorable spinning of the world toward destinies she has not chosen.

She is, as they say, just a mom. But she's the most extraordinary mom, in my eyes, because fate keeps pummeling her heart and she keeps saying fuck you fate and then keeps on running and running and running and running for her boy and for herself and for her family and for anyone who ever felt overwhelmed by life and love and the all-too-swift passage of time.

And that persistence, that determination, against all odds - whether it's expressed in running or writing or just hanging-on-by-the-fingernails coping - that's motherhood at its most heroic. That's heart.

And I am in awe of it.

My sister, finishing the Boston Marathon this week. A portrait (in miniature) of awesomeness.

********

I'm closing comments for this post because a) my heart is a little raw after writing it and I'd like to just let it sit for a while, b) because I'd rather you take that extra second to click over here or here and learn a little about MD, or maybe, if you're so inclined, make a donation.

(Posted as part of PBN's Portraits of Mom Blog Blast)

Evil Mom-Blogger Haters Sent Me Into Labor. Sort Of.

False labor. What the hell is up with that, seriously? It's, like, the meanest trick that the gods have up their sleeves - save, say, giving a pregnant woman who is racked by both anxiety and extreme morning sickness walking pneumonia and her toddler an eye infection two days before they move house. Maybe.

False labor is worse than that. It's worse because not only is it physically painful - the contractions feel pretty damn close to the real thing, which, you know, is not good - it is out-and-out psychological torture. You never know when they're going to hit, and when they do, you don't know whether it's the real thing or not until they begin to subside. So it's this recurring experience of

ouch-OUCH-OUCH-OOOH-OUCH- isthisit?-isthisit?-OUCH-OOOH-isit?-isit? .... ouch-ouch-nope-ouch-maybe?-nope-nope ... gawd ... THIS SUCKS.

It's even better when it happens, like, six times in the middle of the night while your legs and feet are cramping themselves into something approximating badly contorted crab claws. And what's even more awesome? My doctor tells me that although the false contractions (which, she says, could be caused by stress. HA) might signal an early labor, they might also continue for some weeks! Which: GREAT. Shoot me now.

So I'm exhausted. Mentally and physically exhausted and pretty desperately in need of a very dry double vodka martini and maybe a flock of scantily-clad manservants to hand-feed me the olives while I slurp the liquor. Because, you know, that'd help a bit.

But seeing as that's probably not forthcoming, maybe I'll just go crawl back under the covers and not sleep for a few more hours.

HBM (aka CNEZPMB): Portrait Of A Woman Nine Months Plus Pregnant and Hating It.
(Seriously.)

*******

If I had more mental energy, I'd be participating in this week's Friday Flashback party, for which the topic is, First or Most Memorable Early Movie Memory: Discuss. I'd have something to say about having been terrified by Darby O'Gill and the Little People, or about being forbidden by my parents from seeing Grease, two experiences that scarred me for life. Travels into the darker reaches of my childhood memory, however, just might bring on more contractions, though, so, yeah, not up for it. Feel free to jump in yourself, though. (See an example at OTJ, who brings up Escape From Witch Mountain, which, omg, SEMINAL WORK OF CINEMATIC ART AIMED AT FANTASIST CHILDREN.)

(Also, if you're feeling all participatory and Earth-friendly today, you might go do this, too)

Crazy Narcissistic Exploitative Zombie-Pimp Mom-Bloggers, Unite and Take Over

Nothing makes a mom-blogger prouder than to open the online editorial page of a major newspaper and see a picture of her daughter with a hyper-linked headline that asks "Is Blogging About Your Kid Exploitation?"

Of course it is, you say to yourself. And then you print the article and fold it neatly - you know, for the scrapbook, and also maybe for tax purposes - alongside the stacks and stacks of hundred-dollar bills you've collected from the enterprise of exploiting your daughter. The stacks that you make her wrap in wee elastic bands and load into the stroller basket to take to the bank. When she's not busy posing for the pictures that you post on your exploitative 'GET UR LIVE TODDLER SHOW RITE HEER" blog, that is. Or amusing herself in the corner with old vodka bottles while you spend the better part of each day telling the Internet stories about her. You know, for the cash.

I knew what that Globe and Mail story was about when I agreed to be interviewed for it. And I knew, too, that allowing them to photograph Wonderbaby and I would make us a focal point. I also knew that when I said, in the interview, this is going sound totally inappropriate, and probably needs a lot of explanation - it's just that I can't think of a better word - but in a way I think of her as my property, yanno? that the ambivalent preamble would be omitted when the quote was - inevitably - used. (Actual quote, minus preamble: "In a way I think of her as my property, my work of art... She's a work in progress that I'm involved in. To that extent, I have some licence to be public about having her as my muse.") I didn't have a problem with that. I was prepared to stand by that. I knew that I would have to stand by that, because I knew that I'd get shit for that.

And I did. But I wasn't quite prepared for the force of the shit being flung.

In the comments to the online article, this was the tenor of the response:

"Is it just me or is this poor little kid doomed from the get go?"

"Isn't this just another form of pimping?"

"At 6 her daughter will likely hire a lawyer and sue her for half."

"Parents that sit and blog are actually NOT paying attention to their children. You know the old saying 'where are the parents.' Well their (sic) right here in front of you honey, but they are zombified in front of a screen."

"If this is the way this woman views her child, I hope she saves up whatever money she's earning from her pathetic blog to pay for her kid's therapy later in life."

And my favorite (regarding a quote from Wonderbaby, cited in the title of the article) "Who would teach their child to speak like this?"

(Memo to 'Dennis sinneD from Calgary': if you know any two-year olds who can not only construct complete sentences, but articulate those sentences with perfect diction, then you live in some alternate parallel universe where said children quote EB White at five years of age, attend Oxford at seven, and publish their collected essays on the rise of the English novel at ten. Which is to say, NOT CALGARY.)

Anyway. OUCH.

The comments are stupid, I know. And, simply, wrong: I'm not some shameless mom-pimp, whoring out an online kiddy show for pennies from Google ads. I'm a writer. I make money from writing; it's my job, my contribution to the household income, the means by which we're going to send her to university and pay for her wedding and help her buy a house and just generally take care of her and her sibling. But it's also a labor of love - I didn't start writing to make money, I started because I love it. And I started writing about - mostly - being a mom because, in addition to loving the writing, I found solace and comfort and release and community in it. And so did others - readers, and other writers, who shared their stories with me. And so I kept writing, and so I keep on writing, and so I will keep on writing, until I have no words left. The money is nice, but it's incidental to my love for the practice of writing.

Most of what I write is not Wonderbaby anecdote. I'm not simply keeping a play-by-play (or, more accurately, asskick-by-asskick) record of her life. I'm writing what is, in part, a living memoir of my experience as a first-time (soon to be second-time) mother. She's a big part of that - the biggest part, in most obvious respects - but there's a lot about that experience that holds her at the periphery. A very, very close periphery, but still. My motherhood is a work in progress that involves her closely, but it is, also, a work that is more mine that hers. When I said in the article that she's my muse, that's probably as close to the truth of the writing matter as I could get. She is the source of my identity as a mother, and my primary inspiration as a writer - but the story that I tell about the experience of motherhood - the experience of womanhood after having children - is not, strictly speaking, her story. It's mine. Mostly. (The issue of public/private distinctions as these pertain to the quote-unquote institution of motherhood, and the idea of children as any sort of 'property,' are subjects for another post. Soon.) (I'll just say this: the word 'property' - from the Latin proprius, meaning one's own - doesn't necessarily refer to chattel. Rousseau and Mill took 'property' to refer to the broad spectrum of things - including happiness, self-respect, family - that one might hold dearly as 'one's own')

And in any case - even if one does regard my personal blog as simply one long exercise in narcissistic storytelling about life with Wonderbaby - what of it? As this blogger pointed out to me in a private conversation, why does so-called lifestyle writing in print not prompt people to generalize those writers as narcissistic nutbars or neglectful parents or - most pleasantly - pimps? Memoirs, autobiography, lifestyle op-ed columns - these have been around for a very long time, and while some such writers, I'm sure, are called narcissists, most of them have probably not had the unique pleasure of being called crazy, zombified pimps. (Most of them, however, have - from Rousseau to Sedaris - historically been men. There's something about so-called lifestyle writing or memoir by women - online or off - that inevitably provokes hysterical name-calling and foretellings of the decline of civilization. This has everything to do with the historical consignment of women and family to the private sphere, I think, but again, that's a subject for another post. I can only skim the surface here.)

There's something about mothers lifting back the veil of the family that upsets people, that leads people to accuse the mothers who dare do such a thing of neglecting their maternal duties, of exploiting their children, of exposing their children to the dangers of the public sphere, of being bad. But that's precisely what makes mom-blogging - to overuse a deservedly overused phrase - a radical act. We've always been told to not lift the veil. We've always been told to stay behind the veil, no matter what. We've always been told that the sanctity and well-being of our families depends upon the integrity of that veil - upon modesty and privacy and keeping our struggles and our victories to ourselves. Which has, over the course of the history of Western civilization (and that of other civilizations, of course, although I cannot speak to these with any authority), kept us isolated from one another. Kept us silent.

I choose not to be silent. I choose to tell my stories, tell - while she is young - her stories, tell the stories of she and I and our family and our place in this world and to pull meaning from those stories and to speculate on those meanings and to reflect, out loud, on what it means to be a mom in this day and age and other days and ages and all the days and ages to come. I choose to use my voice, my fingers, my keyboard to make myself heard. I choose to write. If that makes me appear, to some, a crazy, narcissistic, exploitative zombie-pimp who whores her child out for the sake of a few bucks and the self-indulgence of storytelling, then so be it.


It's worth it. It's so worth it.

******

Wee update: The writer of the article contacted me and asked if I wanted the offensive comments removed from the Globe and Mail site. I said no - apart from the name-calling, they're expressing an opinion that I chose to engage with (because I think that it's stupid and in some cases offensive, but still) and in any case, I'm not much on with censorship, unless it's me doing it on my own site. Still... was that the right decision? Letting comments that refer to me as 'vile' and 'zombified' and 'pimp' stand for eternity on the interwebs? Or does open discourse require a bit of personal discomfort - perhaps more than I'm used to - sometimes?

Seconds

In four weeks, give or take some days, I will give birth. To a baby. Another one.

At this point in my first pregnancy, I was totally prepared for the arrival of the baby and for any and all potential natural disasters and had already moved on to alphabetizing the boxes of teas in the tea cupboard. I had purchased and assembled (okay, had husband assemble) a stroller (carefully selected after extensive research) and a crib (examined and re-examined and re-examined again for possible defects and potential baby-head-mangling gaps.) I had outfitted the crib in organic cotton linens and stocked the dresser with impossibly tiny onesies and receiving blankets and diapers and diaper ointment and baby jammies and wee socks and booties and even some of those creepy little fingerless cotton mittens that I never did use. I had stocked the bookshelves with baby books, and put pictures up on the walls, and put little stuffed toys on the daybed. If that baby came early, I was ready. If that baby came late, I was ready. If a tornado hit and shut down the city and we were suddenly faced with an extreme diaper cream shortage? I was ready. If the ice caps melted and the streets flooded and we were suddenly forced to float south on a crib made bouyant by a thousand Pampers Swaddlers and some teething rings? I. WAS. READY.

This time? I am not ready. Not even close.

I have one new onesie for this child - one - and that was a gift. I haven't even gone through Wonderbaby's baby things - the stuff that I didn't give away in the weeks and months during which I was convinced that I would never go through that new child thing again, HELL NO - to see if there is, by chance, one or two onesies or pajama sets that are not a) pink, or b) irretrievably shit-stained. The bassinet is in storage, as is the infant car seat. The BabyBjorn was given away, loooong ago, after Wonderbaby rejected it. And the nursery? Looks like this:


Those are bins of laundry - washed, yes, but unfolded, because who has time for that? - in the foreground. And a vacuum cleaner. And while there are books and magazines on the bookshelf, they're all old New Yorker magazines, Penguin Classics paperbacks and Martin Amis novels. Not a single work of Margaret Wise Brown to be found.

I tell myself that it doesn't mean anything, my inattention to the details of preparing for the arrival of this child. I tell myself that I'm slacking because I learned from the last one that all the organic cotton onesies and stocks of diaper cream in the world can't prepare you for the onslaught of mess and noise and love that a baby brings. I tell myself that what's different this time is that I know that money can't buy me baby-love. Or peace, or quiet, or security from fear. I tell myself that I'm not nesting, that I'm not feathering the nest, because I know that the feathers don't matter. That only my love, and his father's love, and his sister's love matter.

But still I worry. Isn't there a fine line between acknowledging what doesn't matter, and not caring? Mightn't I be perched on the slippery slope of devoting less care and attention to this child? This second child?

When I first found out that I was pregnant this time around, I was gripped - along with the joy - with fear and anxiety and ambivalence. I worried that while I was providing Wonderbaby with a wonderful, wonderful gift in a new sibling, I might also be depriving her of me - my love, my devotion, my attention, all of these things, undivided. I don't worry about that anymore. She has been and will always will be given enough love and attention and adoration to last lifetimes. Now, instead, I worry that I am bringing her brother into a life where everything that he is offered - love, attention, adoration, onesies - is divided. Handed down. Seconds. Even if what he is being handed down - even if what is divided - is in quantities that can only be measured by infinities, doesn't it matter that these are still seconds? That whatever he has - kisses, hugs, baby socks - will have been had by his sister, literally or figuratively, first?

That my love for him - although perhaps more the sweeter for coming from a calmer, more mature place - will not be my first, most intense love?

I will love him - DO love him - to the height and depth and breadth my soul can reach, etc. There will be no gaps or shortages in that love; there will be no further distance that that love could travel, no greater height that love could climb. It is, and will be, complete.

But it will always be the love that came second.

Does that matter?