Wednesday, November 28, 2007


Boys and Girls, time for another science post. Quiz to follow. I will try and use less "fucks" and more "alleles" just for Julia. Let's see how it goes.

Genetics Counselor called, and test results from August -- you know, the ones that were to take six weeks? -- are back. Everything is negative. Except for one interesting finding: Maddy's mitochondria were rather depleted. Mitochondria, as Wiki says in nice layman's terms, are the power plants for cells, and let's face it, if you don't have a lot, not much energy there to do things like, oh, produce white matter in your nervous system for starts. Mitochondrial Depletion diseases are usually classified when there is 70% depletion, and Maddy was 60%. But most kids with severe mitochondrial depletion are still alive (albeit barely, and maybe two years or so) so who's to say Maddy's wouldn't have been more depleted were she given more time?

Mitochondrial Depletion diseases are indeed autosomal recessive genetic problems, meaning should this be the answer, both Mr. ABF and I apparently carry a recessive gene that when combined that 1:4 time, makes a child whose metabolic system runs on empty. I should say here for the biologically astute that her mitochondria were perfectly formed, and nothing was wrong with them, there just weren't that many. That's important, because moms give individual mitochondria their genetic information, so it means I don't personally carry a mutated problem (and thus, should we decide to have another child, my eggs are just as fucked up as Mr. ABF's sperm, and thus still on the table, provided I still have eggs to put on a table).

Here's the deal: to date, science (you know, big guy? White Beard?) knows of 5 genes responsible for mitochondrial depletion. We agreed to check Maddy's information for these 5 to see if there are evident problems, and this should take 2 months (read: we might know by Memorial Day 2008). There are currently experimental studies on two additional genes, so if the 5 turn up negative, we will enroll in the studies and that will take a while (read: as long as it takes some overworked grad student to run gels for his/her adviser's grant while simultaneously grading a million Biology 101 papers, doing his/her own research for his/her long overdue thesis, and still making that killer party on Friday night. I'm thinking circa Memorial Day 2009).

This would be somewhat interesting news to have. If we knew exactly the gene that caused the train wreck, we could, hypothetically -- if pigs fly and RE's still agree to take me on as a patient, and my body responds to whatever they need to throw at it in it's now advanced age -- get pregnant again using our own genetic material. We could do PGD or CVS or Amnio and pinpoint that particular gene and see if the embryo is ok or en route to Deadsville. And act accordingly.

BUT (and there's always a but, isn't there?): this mitochondria depletion may just be a SYMPTOM and not the disease unto itself. That is to say, Maddy may have had some unknown (most likely genetic) mishap during gestation and her system opted to redirect it's energy to stave off another problem rather than spend time making mitochondria. In which case, all these tests will come back negative, and we'll be no further along the road to knowing than we are now.

But, for now, it's a visible path in the forest of overgrown genetic mistakes, and we've opted to take it. With our fantastically wonderful luck, it will in likelihood peter-out into a dead end. Although, frankly, I'm not sure what kind of luck it will be to find out our daughter succumbed to some insanely rare genetic mitochondrial depletion fuck up. (whoops. Can I cram "allele" in there somewhere?) Or what kind of luck landed us in this preeminent Children's Hospital that just so happens to specialize in metabolic disasters and knows exactly what to do and where to go to find answers. Good or bad? Better to know or not? Jury still out.

So we wait, but not so much sitting by the phone with baited breath. Not as if an "answer" will bring her back. But it will perhaps, depending on the timing, leave us with some options for reproducing again. And I guess that's something, provided they get around to running those gels before I'm 45.

Monday, November 26, 2007

Signs of Divine Intervention

I must admit that there are times this year I have truly believed in Karma and payback from former lives, and that in my past lifetime I must have been a serial killer of the worst sort. You know, killing extremely cute kittens and puppies with bows on. For food. Or something. I ponder the names Idi and Pol and wonder if there's any connection. Because who loses a child and then has to deal with the minutia of bad shit? Take, for example, a hellatious week in July that starts with an aunt nearly dying from falling off a horse to then have both family cars break down a total of three times, the last of which happened at the airport while trying to pick up family. And the car couldn't be jump started. While trying to plan not one but two parties that weekend. There have been karma breakdowns and demigods of misbehavior waving their wands since February: Drunk driver creaming fence. Neighborhood kid ruining freshly poured concrete. Oven door falling off (and I do mean off, onto the floor. Makes for easy cleaning, I'll say that.) I'm a runner (well, WAS a runner, trying to remember how) so once Bella hit school in September, I hit the trails in an effort to burn off some baby fat. And because in my former life I apparently tortured the kittens and puppies before turning them into a pie, my plantar fascia whigged out, and now I haven't run in about 5 weeks and have very much gained back any weight I dutifully burned off in September. Because why should this be easy or go according to plan?

And then, amongst the shit pile, are small tiny gems where I wonder if there is indeed a God, and s/he is keeping just a wee tiny eye out for me and my mental health. The college football season, which I normally pay close attention to, and normally is a big fat yawn following the script minus a game or two, is intriguing this fall beyond my wildest imagination. The vast array of Republican scandals this year has been nothing short of giggleworthy. And Mr. ABF informed me of the best news I've heard in a long, long time: one of my favorite fast-food restaurants is opening a store 10 minutes from my house. I may be in the shitpile, but now I've got good fries to keep me company. Or maybe I'm reading this wrong: without the running, and the fries, I could be accepting my new identity as a coronary patient. Time will tell.

Wednesday, November 21, 2007

Um, Thanks, I Guess

I know many of us have jack shit to be thankful for. Because if you're like me, you're thinking things along the lines of: I'm thankful my daughter died here, and not where we used to live. (No offense to where I used to live, which was perfectly lovely, but the family, neighborhood, and especially medical situation here is wayyyyyyyyy better.) I'm thankful she died in our arms and not hooked up to machines with doctors working on her. I'm thankful one of my two daughters is alive. And really, if that's what I'm reduced to giving thanks for, that's pretty grim and sad, no? No one should be in a position to make such positive sounding propositions out of a dungheap: I'm thankful the IED only took my one leg and one eye. I'm thankful the fire destroyed my house and everything I own, but not my family. I'm thankful for this tasteless but warm dinner, because it's far better than what I normally get seeing as I live under a bridge.

Perhaps this holiday is made for the downtrodden, as a chance to reexamine life and just be grateful for existence (although I'm sure for some, existence is not all it's cracked up to be). Maybe living through hell should make us grateful for life, or family, or something. Or maybe it's for the rest of humanity to just be grateful that they're not us. I'm not sure I'm feeling so big and magnanimous, mature and introspective this year. I think I'll take a pass on the meaning and significance and aim right for the crass aspects: stuffing, gravy, pie and football. But, I must sheepishly confess that I am a bit thankful that I decided to venture out and do this blog business, and have met a most supportive, interesting, smart, and funny group of deadbabymommas and supporters thereof to help keep me sane. Have a spoonful of something bad for you, on me.

Monday, November 19, 2007

Circle of Life

In what appears to be a "growing trend," someone scattered human remains (read: ashes, not, you know, limbs and hair and teeth) on the Pirates of the Caribbean ride at Disneyworld forcing workers to shut down the creaky rowboats while they made sure it was just deadpeople detritus and not anthrax. And apparently they're not overly happy that it might be harmless ashes, because those gum up the works, and really throw the audio off in the "Yo Ho Yo Ho, A Pirate's Life for Me" portion of the trip. More so than the millions of plastic souvenir cups and mouse-ear beanies and cameras I'm sure they scoop out on a daily basis. Not to mention it puts a bit of a damper on the "Happiest Place on Earth!" slogan to know that funeral rituals are going on in the gondola next to yours.

George Smith! The doctors were unable to revive you after your coronary, and your family just took you off life support! What are you going to do now?

I'm going to Disneyworld!!!

But let's cut to the chase: who in their will has their dying sentiments expressed as "please cremate my remains, catch the next AirTran flight to Orlando, and sprinkle me throughout what used to be a somewhat scary but is now an excessively overmarketed Disney (tm) ride in a crowded park full of tourists and sugar-hyped children. To remember the occasion, I ask only that you purchase a plastic skull beer can holder with lighted eyes (batteries not included) at the gift shop on the way out"? I've heard of sprinkling ashes at the Grand Canyon, Yankee Stadium, the ocean, outer space, sunset views, and in the forest, but Disneyworld?

I shouldn't judge. This might have been someone's magic kingdom. Maybe there was a marriage proposal in the dark rowboat while faux bombs were dropping perilously close in the water. Or, perish the thought, maybe this was a child's dream to remain forever with the characters from his/her favorite movie. Now that I think of it, Maddy will never get to experience Disneyworld, or anything Disneyovermarketed (tm) -- maybe she'd appreciate spinning on the teacups for eternity?

As the writers are on strike, and with all due apologies to the picketing Letterman staff, I thought the grief community should pick up the slack and create a Top 10 Locations for Scattering Remains. I have started us off, please submit your ideas in the comments.

10. The Oval Office. Forgetting the logistics of getting your ashes in there, here is a permanent place of power to remain with in perpetuity! Think of the intellect! The intrigue! The scandal! The [expletive deleted]! The endless discussions about which tie to wear when meeting the prime minister of Fill-in-the-blank-istahn! The boring suited guys walking around talking into their wrists! The goddamn boring paperwork and endless requests for signatures! The schmoozing and the asskissing and the . . . Ok, maybe this isn't such a hot idea. Next.

9. Le Bec Fin. Because otherwise how will you get a table?

8. Target. Instead of Disney, which let's face it is a bit space restrictive in terms of how much new marketing they can cram in there, go to mecca! Have your survivors sprinkle you around the store -- a bit in video, a bit in audio, a bit in electronics, a bit in toys, a wee sprinkle in housewares and clothing -- and keep up with pop culture and trends (not to mention the latest in leaded toys and world trade politics) FOR.E.VER. And I know you love it.

7. Starbucks. Because nothing says "heaven" like Grande non-fat no-sugar caramel latte.

6. Recycling Center. Go Green! Dump ashes in the plastic bottle bin and the adventuresome soul can indeed be reincarnated for another life! As a countertop! Shoes! Another plastic bottle! Or pour ashes into compost pile and return soul to the earth FOR REAL while ashes help propagate roses, azalea and a myriad of vegetables! (warning: for the faint of heart, this may border on cannibalism. Check with your local spiritual guidelines.)

5. "Over my dead body." Stick to principal. Jewelry not getting passed to someone? Bank account not going to that wretched family member? Stupd-ex-whoever showing up in your house? Insolent child eating ice cream BEOFRE dinner? Daughter wearing scandalously low-rise jeans out of the house? Scatter your remains at the place of your worry be it the jewelry box, bank lobby, front door threshold, freezer. Have family members confront the guilt literally, and we'll all keep our fingers crossed while you wait it out for an eternity. At least you'll have something to keep you occupied.

4. Your turn . . .

Wednesday, November 14, 2007

Deadbabymama Tunes

I thought I'd post a deadbabymama playlist replete with little audio clips and such, but while I can sort of figure out how to put clips in the post, I can't really find a definitive answer as to whether that's technically legal. Have I skirted the law? Crossed against the light? "Shared" a CD with someone? Not reported a slight overcharge here and there? Um, yeah. But being new to all this would hate to have some lawyers on my ass because I really don't have the time. Oh hell, who am I kidding, I really don't have the time to make little clips anyway, so I'll just try to send you somewhere that has them and THEY can deal with the lawyers, ok?

A bit of background that will probably bore you to tears and if you are already, I'm sorry, feel free to skip ahead. I started playing violin around 5 years of age and played "seriously" until I was 22. At that point, "working my way through graduate school" did not include busking. (I was in the Midwest. It would have been difficult 9 months out of the year, anyway.) I took out the fiddle for the occasional Handel "Messiah" at the holidays, and now I pull it out to show Bella that indeed, that little diddy on her electronic gizmo is in fact a real piece of music that sounds a bit better (usually, when someone has warmed up a bit and practiced) on a violin.

Contrary to popular belief, growing up around classical music does not preclude one from considering all other genres of music utter trash. (Just teen pop shlock.) I actually feel that my background has opened me up to accept pretty much any music with the caveat: it has to be good. So, if the rock/pop/rap/jazz/R&B/C&W/grunge/garage/folk/"world" song is "good," I'm game. Now, granted, some of these genres don't lend themselves so much to "good" -- C&W, I'm looking at you. But, with some appreciation of lyric, tone, complexity, and general interest, Patsy Cline not only makes the cut but is a favorite. There's much to learn about breath and phrasing and just good feelin' listening to some Patsy. You're probably thinking I played Mozart to Bella in the womb but Ha! The Outkast CD had just been released, so Bella is a "Hey Ya" and "I like the way you move" baby. She gravitates toward a good bass line.

To paraphrase Nick Hornby extremely liberally to the point of offense, I too believe that people's musical taste evolves as far as it will by age 17 and doesn't mature much thereafter. Not that you don't listen to different music (you do, right? RIGHT?) but that it has some connection to the stuff you liked when you were 17. (Hornby's theory may change with the ongoing American Idolization of "the single" (or god forbid, "the ringtone") replacing "the album.") I fall into this trend. Not to date myself here, but when I was 17 I was in the thick of Sting, Paul Simon, Peter Gabriel, Rush, and a plethora of 80s rock groups (Echo and the B'men, anyone?) so I tend toward the musically complex (I like a lot going on, especially in the percussion section), lush dense sound yet sophisticated, with some (but not always) interesting lyrics. Throw me something with an interesting beat and introduce an instrument I wouldn't otherwise expect and you'll have me in your palm.

Classical music is actually where I get picky. Things that are boring to play are boring to hear, and I would sooner sort my sock drawer with my eyelids pinned back than listen to Bolero or the Pachabel cannon. I've also pretty much had my life's fill of the Brandenburg concertos and the Beethoven Overtures and Vivaldi's Seasons, although sometimes I surprisingly find myself listening to them. I like the complex here too: Brahms, Sibelius, Brittan, Tchaikovsky, Bach. One thing I only realized recently is that I have NEVER really liked the slow stuff. I'm not sure if it was the actual pace of things (I'm a person that has to always be in motion -- has to be doing something while watching TV, walks around while brushing my teeth), or the underlying sentiment that I didn't have the maturity or life-experience to appreciate. Maybe I never got sad, and now it's a bit too close? I always appreciated the slow, found it "pretty" or "nice", but I was always looking ahead on the score through the second movements of seemingly endless Adagios and Largos and Lentos gleefully anticipating the Scherzos that followed. Interestingly, this sentiment bleeds into my "other" musical taste as well -- I turn the dial when slow and melancholy and angst come on, and aim for something with a little movement. Not to say I'm not a romantic: I love Scheherezade, Swan Lake, American in Paris, the Lalo violin concerto, as well as pretty much any rendition of "You Can Leave Your Hat On" and Peter Gabriel's "Sledgehammer" and the Beatles' "Michelle."

You can damn well believe that Clapton's "Tears in Heaven" and anything off Pink Floyd's "The Wall" will not make my current list (although if "Comfortably Numb" comes on, I'm probably not moving the dial). Not only are they slow, they're downers. I'm depressed, but I'm not up to pouring flaming hot molten lava into the wounds either. When I stopped to consider what my top few iDevice tunes were over the past few months and really dissected them, lyrics and all, I was actually a bit surprised to discover how upbeat some of them were. Aren't I cynical? Brokenhearted? Shaking an angry fist at the sky? Should I be listening to Nirvana? Eminem? Somebody's "Requiem?" Yeah, but I guess I have to locate that inner cynic I can dance to. There's an occasional slow down, but not a slow one per se.

1. Jonatha Brooke, "Careful What you Wish For" And I mean really, doesn't that just say everything? There's just something sad and angry in this that really speaks to me.

Relevant Lyrics:

Careful what you wish for, careful what you do
Even when you whisper, someone's listening to you
Careful what you wish for, careful what you say
Careful what you wish for, 'cuz it just might come true someday

Now that I have everything
I'm a puppet on a string
Someone's got the end and I'm unraveling
And here's the thing
I would throw it all away
If I could only hear you say,
"Baby I'll stay, baby I'll stay"

First I wished for money and a house on a hill
I had so many friends around me, but which ones were real?
Careful what you wish for, careful what you dream
'Cuz no matter what you wish for, it's never gonna be what you need

2. Jem, "It's Just a Ride" A little pop-y, and techno-y, a wee bit zen-y, and perhaps a bit too shallow of a message for my current state of affairs (because if this is the ride, I shoulda gotten off a lonnnnngggg time ago and blown up the car), and yet I can't stop listening to it. Why?

Life, it's ever so strange
It's so full of change
Think that you've worked it out
then BANG
Right out of the blue
Something happens to you
To throw you off course
and then you

Yeah you breakdown
Well don't you breakdown
Listen to me

It's just a ride, it's just a ride
no need to run, no need to hide
It'll take you round and round
Sometimes you're up
sometimes you're down
It's just a ride, it's just a ride
don't be scared
don't hide your eyes
It may feel so real inside
but don't forget it's just a ride

3. Patty Griffith, "No Bad News" Bordering on the country genre here, with a smackeral of folk maybe, and yet timely message with a catchy tune. Get yer banjo right, and you can't go wrong. That and the trumpets. (Although the slimmed down acoustic version is pretty great too.) The one thing I do like about country is it's a rare genre that you can really grouse about life being in the shitter, knee deep in the gutter on Christmas, lamenting lost love with a plastic cup of Jack Daniels, to some wacky upbeat guitars, banjo, and harmonica. And make it work.

Don't bring me bad news, no bad news
I don't need none of your bad news today
You can't have my fear, I've got nothing to lose, can't have my fear
I'm not getting out of here alive anyway
And I don't need none of these things, I don't need none of these things
I've been handed
And the bird of peace is flying over, she's flying over and
Coming in for a landing

4. Modest Mouse, "Float On" (Sorry, that's actually a link to the video -- it's off their not-new album and therefore impossible to locate anywhere anymore.) It's happy lyrics (more or less) with an angst-ridden beat. I like it.

And we'll all float on alright
Already we'll all float on
Alright don't worry even if things end up a bit to heavy
we'll all float on alright
Already we'll all float on
Alright already we'll all float on
Ok don't worry we'll all float on

5. Peter Gabriel, Downside/Up (live). This was on my run mix before the disaster. And I never really paid a whole lot of attention to it, other than it was Peter Gabriel and I like him. So imagine my surprise when I ran for the first time post disaster and actually heard the lyrics. I'm sure he's referring to being in love, or a love affair gone bad (if I had few more moments I could pinpoint this on the PG timeline and know for sure), but all the lyrics are so pointedly appropriate, I could put the whole song here. But I won't.

All the strangers look like family
All the family looks so strange
The only constant I am sure of
Is this accelerating rate of change

Downside up, upside down
Take my weight off the ground
Falling deep in the sky
Slipping in the unknown

6. Queen Tribute Band, "Somebody to Love" Yes, the original Freddie Mercury (may he RIP) power ballad was pretty kick-ass too, but there's something about this a capella group set-up and the more upbeat tempo that I find rather endearing.

Each morning I get up I die a little
Can barely stand on my feet
Take a look in the mirror and cry
Lord what you're doing to me
I have spent all my years in believing you
But I just can't get no relief, Lord!
Somebody, somebody
Can anybody find me somebody to love?

7. Ben Harper, "Better Way" This is probably more a political statement for me than personal, but I appreciate the lyrics and damn if it ain't a good song too. Would love to hear an extended live version where the end drum stuff goes on for another ten minutes. I don't know how you can't help moving to this.

Reality is sharp
It cuts at me like a knife
Everyone i know
Is in the fight of their life

I believe in a better way!

Take your face out of your hands
And clear your eyes
You have a right to your dreams
And don't be denied

I believe in a better way!

8. Beethoven," Emperor" Piano Concerto, No. 5. (Scroll down beyond the discussion and you can hear all three movements.) Listening to classical music after February was really hard. Probably because there are no lyrics or music videos (the movie "Aria" and some Bugs Bunny cartoons notwithstanding), so you could just insert your own wretched thoughts into the piece. None of it helped. It was all awful. The first thing I reached for when I was ready was this. It's probably less to do with the piece itself, and more to do with the fact that I know it inside/out like a comfortable shoe. Every phrase, instrument entrance, pause, breath. This to me is my musical mashed potatoes, carton of Ben & Jerry's, and sweatpants. The last movement is pretty good, too.

I should probably also add Feist's "1234" with the following caveats: 1) I liked this back at the beginning of the year, before the commercials and overhype, 2) it's currently Bella's favorite song. She's memorized it all, and sings it on pitch and everything. Nothing like hearing your 3-year-old crooning, "Woah, oh oh, change in your heart." Good thing. Five Little Pumpkins was really starting to bug.

Saturday, November 10, 2007

Nine Months

Julia had me thinking about the nine month marker, which I'll probably hit by the time I get around to posting this missive.

(And may I stop here and say holy hell, how do some of you find time to do this post-every-fucking-day-in-November-blog thang? I don't have time to shower every day! Can you even believe that Smitten is posting once a day? Smitten! Unbelievable. The world is chockablock with people who don't deserve to blog, and I think I'm one of them.)

Nine months is obviously the time one carries a child, although I must say to a former math-nut, the week/month thing always threw me for a loop. So, nine months of my life were essentially wasted (my current point of view) carrying a child that would die, and now I'm nine months out from "it." I thought I'd take a moment to list some changes I've noticed in my immediate surroundings during the last nine months. I'm not going to try and dissect these too awfully much, nor will I assign them into positive and negative columns because my brain would implode and you would probably get very tired of the redundancy. I'll skip the obvious stuff, like, you know, the fact that I don't have a second child anymore. So here, in a nutshell, are some things that have occurred since that wretched week in February:

* I'm off my antidepressants. The memory loss was making me more anxious than the grief. Not entirely sure that my short-term memory has returned though, leading me to believe that it was the grief. Shit.

* I've lost weight. But I still could stand to lose about 10-15 pounds.

* Bella is potty trained. Well, 99.8% potty trained. Enough that the occasional accident is confounding.

* We have a new Dog, Buddy. This is one of those "major life decisions you shouldn't do during the first year after losing a child" (and hey, is that an urban legend? Has anyone run across this advice in a professional setting, or is this one of those things they bandy about soap operas and it works it's way into popular culture?), but we couldn't resist. Neighbors were fostering a dog that had been in a horrible car accident (threw hip out, shattered leg) whose owner surrendered him at the emergency vet once he saw the bill. We had been thinking of another dog for our 8-year-old Max (saved from the DC animal shelter in '99), and in a state of numbness and "oh, what the hell," we took Buddy into our home in May. The dogs get along famously, Buddy loves Bella, and more importantly, Buddy woke me up and made me start noticing my other animals again. Suddenly, I started paying attention to Max and my two geriatric cats to make sure everyone knew there was enough love to go around. Hey, I have pets! They're pretty great! Even my daughter began playing with Max again, much to Max's dismay as he stares at me from under a blanket wearing a party hat. I can say in this instance, this significant change turned out to be a positive. Unless you count the fact that Buddy eats Bella's socks and has destroyed numerous members of the stuffed animal menagerie.

* Big things roll off my back like water off the hippo; the little things annoy the piss out of me and make me ballistic. Drunk driver runs into our fence at 2 a.m. and does thousands of dollars worth of damage? Hey, whatever. Shit happens. Good thing the dogs weren't out. Less than a year-old fruit-adorned laptop refuses to respect strong wireless internet connection on any browser? (Might I say, internet connection so strong that I'm considering blogging full of typos from my iPhone, and I'm pretty sure Bella updated her MySpace page using her toy oven.) My eyes start bugging out and the profanity starts flowing. Soiled Bella underpants and discovering I'm sans quarters at a parking meter can reduce me to tears lamenting my horrible luck and apparent former life as a serial killer; the fact that Buddy will need major hip surgery in the upcoming months or that our ancient house needs a new furnace is met with a nonchalant shrug. Big Bad Things now have a definite threshold. Little stuff could use some work.

* I finally cut my hair and waxed my brows.

* Bella is a pro at death. For a three-year old, she has it pretty much down, save for a few charming embellishments. I told her recently that my aunt had to put a horse down, and she met the news with a tragic face, a pitiful "ohhhh!", followed by, "we'll never see him again." No, we won't sweetie, we won't. (Profundity was followed by some stupid-ass remarks about bringing him back to life with a magic drum, which I think she picked up from a Diego episode? Curses, you, Dora. But really, I think she gets it.)

* I'm socializing again. Back in February I really thought I'd never speak to another human ever again, but here I am, attending my first book club meeting, looking forward to a neighborhood brunch on Sunday, already thinking about the annual neighborhood Christmas Party which, by tradition, takes place in our house (it was a contingent of the sale, little did we know). Well, socializing with everyone but those with babies. I haven't spoken to neighbor with baby since a week after Maddy's death (I believe my last words to her were "she died,") nor cousins who had baby this summer (last words to them were "Where's Bella?" as I walked into the house after returning from the hospital moments after Maddy died in our arms). For some reason the holidays are imposing this false deadline on me that maybe I should reestablish contact with them soon. Eh.

* I'm blogging. I feel a bit about blogging like I do about writing poetry (or like Billy Joel apparently does about writing music): It's only good if life is absolute shit. Live babies, requited love, perfect flan, and terrific outfits do not good, honest, and intriguing blogging (or songmaking) make. (We'll just call it the "Uptown Girl Phenomenon.") I never really delved into the deadbaby blogs when I was on the other side, unless someone I happened to be reading (Cecily) wound up there more or less in front of my eyes. For a time after Maddy died, I couldn't bear to read them -- they just hurt too much. And then I wanted to know how on earth they got through it, so I went back through Cecily's and Tertia's archives. And just kept reading. And here I am. Still not sure how I'll get through it. But go we must, eh?

* There's a box on my shelf in my family room that holds what I'm guessing is a few teaspoons full of ash. I often look at it, or pause to say something to it. When we went on vacation this summer, I transported the box to my aunt's so it wouldn't be alone. I have no idea what I'm going to do with it. A year ago, I thought people who kept urns/remains in their homes were just the creepiest people. And here I am, CreepyMama. I'm not sure whether I want all that remains of my younger daughter with me, or scattered to the wind somewhere lovely where she can float amongst trees or waves or kids playing soccer. It's been a helluva nine months. At times it feels like 9 minutes, and others it feels like 9 years.

Tuesday, November 6, 2007

Better Off

Maddy was alive from 4:45 p.m. Monday, 2/12/07, to 8:30ish p.m., 2/18/07. Six days. It's mostly a blurry roller coaster descent into hell, except for Tuesday night, which was the low point, Dante's lowest ring. Hard to believe there was a low point in this week, but in retrospect, I believe that was it. I cried all week, but Tuesday night is when the howling let loose.

Late afternoon/early evening, on Tuesday when Maddy was roughly 24 hrs. old, a neurologist sat down with us and told us that not only was our daughter blinded with glaucoma, but there were serious problems regarding her brain development. (Definite nomination for understatement of the year). How bad? Should she live (still a big question mark as of Tuesday), she would have severe brain damage.

When it comes to prenatal testing, I'm in the camp that likes to know. After a miscarriage and a lovely daughter, I can honestly say I have no idea what I would do if faced with a bad genetic report at 18 weeks of pregnancy, but I surely know that I would want to know. I would want to prepare myself and my family for whatever my ultimate choice was. I like walking into things eyes wide open, and I'm not one to give over to fate or chance or put up with what the universe deals me. So after a clean amnio and what I thought was a healthy pregnancy, the news that my daughter was severely brain damaged pulled the rug and reigning life paradigm out from under me.

And I panicked. Not so much a metaphor to say that my entire universe came crashing down around me -- on fire. My mind couldn't shut off the blender of disturbance: would my marriage survive? Would we have to modify our new house? Would we have to sell our new house to afford care? Would we go bankrupt? How would this impact our toddler? Would having a probably-hospitalized daughter suck an inordinate amount of parenting time and necessary financial resources away from Bella? Would we ever be able to travel again? Could I be a mom of two where one lived somewhere else? How would our extended family react? Would it be Bella the lovely one and, oh, her, yeah, sorry almost forgot? From personal to monetary and back again, I grew more nauseated by the idea by the minute. I began to contemplate the impractical and poetic: what if I just whisked Maddy away, under a cloak (well, cloak of our volvo) to somewhere cold and snowy, say, far northern Canada, and we lived out our lives in a fur-lined hut on the edge of a community who took pity on us and occasionally dropped off a basket of unknown meat? At least this way Mr. ABF and Bella could have some normalcy. And I cried. Doubled over and sobbed.

It was not a pretty moment for me personally to think this was how I reacted to the health forecast for my own child. For the first few weeks after Maddy's death I felt great shame about Tuesday evening, but came to the conclusion that it was purely an evolutionary, self-defense mechanism on my part. When life hands you an oncoming vehicle, one's reaction is to curl in the fetal position and protect the family. And that's what I did.

A few hours after howling at the moon, and pumping, and falling asleep for 45 minutes, I limped back to the NICU and held Maddy. I honestly can't remember what I was thinking while holding her (everything? nothing?), but by going back and taking her up, I can honestly say that I reasserted myself as her mother. No matter what the future held. I was not happy (there are actually a few photos of us that night, the saddest I have probably ever been in my lifetime), I was not resolved by any stretch of the imagination to deal with any of this (surely still thinking of the easiest way to get up the east coast through Canada -- do I stick to 95? 83?), but deep down I knew I had to get used to a new paradigm, and Maddy was it. And all I understood, all I knew how to do at that moment, was hold her. I assume this was probably an evolutionary instinct as well, that when life presents you offspring, you desperately cling to them and attempt to ward off the lions. And so I did until well after 3 a.m. Tuesday night/Wednesday morning when I finally couldn't keep myself upright any longer and fell asleep for a rough few hours.

I woke up somewhere around 6 a.m. Wednesday morning, Valentine's Day, and turned on the pump to the early early morning news, watching the near-blizzard conditions outside my hospital window. A NICU doctor walked in as was typical when I was naked from the waist up and plugged into the wall, sat down in the chair next to my bed, and told me that around 5 a.m. -- not long after I had left her -- Maddy had a seizure that stopped her heart. They did CPR, pumped her full of drugs, and had her breathing again on a respirator. And right then and there, in that room, in those few seconds, before I had a chance to find some measure of peace in the "my daughter is severely brain-damaged" plateau, the paradigm shifted again: I asked at what point we had to think about how much interference was too much, and he looked me straight in the eye and said "I think we're there now." From that second forward, I wanted whatever was best for Maddy -- not me, not her sister, but her. And if it meant pulling her off her equipment so she could finally rest and stop fighting, than so be it.

As badly as Mr. ABF beats himself up for his panic attack on Tuesday evening (he apparently hyperventilated trying to get Bella to fall asleep, and stayed up until the wee hours online, tracking down the best rated institutions for blind, deaf, and otherwise handicapped children), he arrived at the hospital moments after the NICU doctor left my room, with a totebag of books. On Tuesday, after delivering us a world of devastation, the neurologist told us there was little anyone could do, but: if anything in Maddy's brain was functioning, reading to her would be the best exercise and medicine to try and work any connections that may remain in her poor little head. Her father, after defending himself and his family, showed up ready to be Maddy's father to the best of his ability. And was told that he probably would not have this chance: we were now in a place where we had to think about Maddy's comfort, her pain level, her dignity, and her death. Mr. ABF sobbed, picked up his tote bag, and went and started reading to Maddy.

More than one person told us in the weeks following that "This was for the best." And frankly, I had to agree: for us and for Maddy. It was too much to see her suffer, and I don't want to contemplate what was going on in herself with what little nerve connection she had. But as a grieving parent, I deserve the right to change my mind on this, and I have -- multiple times, sometimes within the same day, or same blogpost. It was not for the best that she died, just as it was not for the best that she was born with a medically impossible set of issues. Babies aren't better off dead, they're better off with their parents. I'm certainly not better off with a dead daughter. I'm a bitter little pill who still can't taste or find joy. There are times I honestly wish I had one more week with her -- one more week to just rub her fuzzy head and read, even if she just lay there, and caused us all sorts of babysitting hell running to and from the hospital. One more book. One more story. One more hold. I can't possibly be better off with my daughter in a box on a shelf.

Or am I? When I dream about Maddy being here, she's healthy. She's a wide, blue-eyed child, who can see me and her dogs and the sky. She can walk, run, see, talk, love, breathe, eat, and be. And I know this is pure fantasy: were she to have lived longer than her 6 days she would've been confined to a bed, a tube, a pump, and drugs drugs drugs for however much longer she had on this earth. Were she still here I would not have had the time to sew Bella's Halloween costume, let alone potty train her, take her to the beach this summer, throw her a birthday party, or just be there for her as her mom should. I would not have time to attend therapy (which I certainly would've needed were Maddy to have lived), write a blog, exercise, or sit by the fire with my husband after an insufferably long no-nap, temper-tantrum filled day. In all likelihood we would not be waking up in our beautiful old house, in our wonderfully supportive neighborhood, wistfully looking at the Blue Atlas Cedar in the yard while contemplating how to renovate the kitchen. The fact is, I don't know if I'm better off or not. There are times that I wonder if Maddy's "gift" as it were was dying when she did. Perhaps Maddy gave us the clear, unmistakable signal that it was time, so we could begin to rebuild as soon as possible, no matter how unspeakably hard that rebuilding might be.

I know parents who had children who were very sick, uncommunicative and essentially brain dead for quite some time before their deaths. Parents who lived at Children's Hospital for years. To a one, they all said they'd do it all over again if given the chance. I'm not sure whether I'm cursed to have only had six days, or lucky.

Friday, November 2, 2007

Who is It?

Well! Turns out blogging CAN be beneficial! And lower cholesterol! I'm sure there's a weight-loss gimmick hidden here somewhere, or maybe money to be earned at home! But wait, there's more! Turns out just by writing that freakin' last little piece on my reproductive plate of spaghetti, and reading through your most edifying comments, I discovered (lo) that when I cut through the underbrush I have essentially 3 options when it comes to expanding my family:

1) Cut my losses, pack it up, move on. (Strangely appealing, this one.)

2) Adopt. (Entire scores of blogs on the travails of this, will leave for another time.)

3) Try again of my own uterine accord.

Item (3) contains the following three (well, two) sub-options:

A) Use our own stuff: go on met'n whilst shootin' up the prog'one, and GO FOR IT! Um, not. Niobe, I too am not a gambler when it comes to dead babies. Miscarriages are one thing, but dead kids after 41 weeks? Not so much, thanks. With you here. It would get ridiculously fascinating though, were they to unearth Maddy's issue and come back and say "AHA! It's gene [biological-gobbledigok]!" Because what would we do then? Cruise forward a few times hoping we could get by CVS at week 11? (Do I even have a "few more times" within me?) Move right to IVF/PGD even though it's expensive and not entirely skewed toward a sunny outcome and the picture becomes even less sunny (apparently, according to recent studies) if PGD is thrown in the mix? Would that we could sift through these. But I'm 'fraid not. (A) is out. That leaves us with

B) Use donor egg

C) Use donor sperm

So! Like many of you insightful readers (really, I'm feeling like such a Grief-Poser here that I didn't think of this myself) my therapist also suggests that I "try on" a few options for size in my mind's eye, and project myself into the future by a decade and fantasize about what it would be like to be tall, thin, busty, driving a hybrid BMW 6-series convertible, er, AND TO BE A mother of one, mother of two but one totally unrelated, mother of two but one somehow related. You get the point. So far this is excruciating difficult. When I was on a certain antidepressant that starts with a Z I ran a little experiment (shhhhhh) and tried to contemplate suicide to see what my mind and the drugs would do. No worries please, this was never an option for me -- not even why I went on antidepressants in the first place -- and I actually had to think through some methods via favorite TV programs because I'm just that removed from this particular time zone. Anyway, I was fascinated to see that the drugs (I guess) sllllooowwwwed down my thoughts to the point that by the time I should have been visualizing turning on the car in my enclosed garage I was so bored with the process that I had already leaped umpteen degrees away wondering what to have for dinner, or what color scheme I should use in my flower beds. I bring this up because, strangely, I'm having the exact same problem here trying to visualize me as a mom circa 2017, and no, no drugs involved any more. I try for the life of me to project myself in the future with more children (or not) and my brain just comes to a screeching halt, and suddenly I'm wondering whether I should get brown boots or black this winter, and just how to go about trading in my used station wagon.

I'm wondering if this means, like Megan and Kate described, that I don't have hunger. Or thirst. Or pretty much any food-like or further-mothering interest whatsoever. Back after my miscarriage in '02 when I was a total reproductive novice, I had the hunger. I researched and googled and message board-ed to the end of the earth and finally crashed through the door of the RE's office and said "hey, as fast as you can dude. Bring it on." And when I was ready for child #2, I had that thirst again -- not like we can get pregnant by accident here -- so I drove back to the RE and re-upped, and re-tested, and re-biopsied, and re-whatevered and got pregnant with Maddy. But now? Nothing. I haven't even called my RE to tell him how this all turned out. (He's in another state now, so I don't feel quite so guilty or shitty about this as I probably should. Not like he's getting the call again.) I haven't googled anything about egg or sperm donation. Or adoption, for that matter. I'm really very stuck.

So, the question becomes, am I stuck because I'm grieving (coming up on nine months here) or am I stuck because this is it, my gut is sending me a message to close down the shop and turn off the lights? I try desperately hard not to second guess my grief. It is what it is, and I think I do a reasonably good job of letting myself pass through it. But it's very hard now to try and figure out what is what in my poor fried head: is it the grief talking, or me?

Postscript: I'm sporting a rather big lot of bandaids on my thumb for some wacky nail issue, and hence I've made an embarrassment of myself on a number of your comment sections. I apologize. If my imac actually could run through the "Preview" comment option without spewing smoke and starting to gurgle, I'd do it. Many apologies.