Sunday, September 30, 2007

Saw this in the store today. I'm anxiously awaiting the sequel, Why Very Gorgeous and Extremely Smart People Have More Dead Daughters.

Friday, September 28, 2007

Murphy's Law

. . . apparently follows me into my new adventures in the blogsphere. Figures. The Children's Hospital report showed in the mail today, tucked underneath my highly anticipated grandinroad halloween catalog. My favorite sentence thus far, and I'm very tired and have only skimmed it, is the doctor recalling our actual meeting in August, and stating "the parents have been grieving appropriately." PHEW! That's a load off, because I was starting to wonder. In fact, what is INappropriate grieving? Is there a Miss Manners text on this that no one has brought to my attention? Maybe I should have told them about those Thank You cards that I have yet to send.

In any event, the funky stuff, should you care to continue googling, is: 3-hydroxyisobutyrate dehydrogenase. There's also some stuff that I had forgotten about acidosis, so really, if you're medically inclined and want more, I'm waiving my privacy here.

Thursday, September 27, 2007


Before I go all Quincy, M.D. on your ass, I need to deal with a few business items. I have a few things to iron out in this blog business before I get back to regularly scheduled programming. (Don’t touch that Bat Dial.)

If you blog it, they will come. Thank you for visiting, reading, and commenting –- all, uh, dozen of you? No, really, I’m floored (and a bit mortified, no pun intended) that I don’t know a few of you. I started this as a journalistic experience with wild hopes of finding people who had experienced similar tragedy. And lo, similar tragedy ensues. I was actually rather taken aback that people were commenting, I didn’t really know what to do (!) (insert blog virgin joke – you’d think I had never read one of these things), but I’ll try from now on to respond to you in comments if I get a few moments. (I didn’t mean to be rude and ignore any of you.)

I can’t tell you how sorry I am to hear of the many, many losses mentioned in the comments. I’m reminded of the memorial service I went to at Children’s Hospital in April for those who had died in the last six months (can you even believe they do that twice a year???) and was just overwhelmed by the heavy thick grief hanging in the room. And then the slides started. Far too many children to comprehend, but the babies – oh, so many babies. Sometimes I wonder how we continue to exist as a species with all the blogs devoted to miscarriage and loss.

Speaking of, I’m a newcomer to this party, but I’d like to start a column of death and destruction on the side – A Legion of Doom if you will (and if no one has dibs on Bizarro, he’s mine). I got so overwhelmed by the infertility and miscarriage blogs that I eventually whittled my way down to the big three in order to keep up with some other stuff in my life (that Wonkette slays me and I need to keep up with the Beltway dish), but would like to start keeping tabs on people like me. I've haphazzardly started my way through Stirrup's List, but haven't had time to peruse all and see that a few have been left unattended for a while. So if you pop Zoloft and write one of these things or maybe just read one that you think would toot my fancy, please let me know and I’ll put you over there. And then I’ll cry over your stories and photos and share in your pain, a process I’ve already started in earnest. I’m so glad to know I’m not alone in this ring of hell, but so sorry that so many of you are here with me.

As for today’s item of interest: My grad school advisor used to crush me editorially on not starting at the beginning of a story, and taking for granted that everyone knew what I was talking about. Boy, I can see her madly circling this page right here (and even seriously pausing to put a big ol’ red ring around the word “fuck” and writing in the margin: “Explain”). And here I have a lovely reader who’s willing to spend some free moments on her tough-as-hell, unsung- hero-of-a job to research some medical obscurity that I haven’t even really fleshed out. I heart you. So here, for your clinical reading enjoyment, is the Reader's Digest Condensed Version of Maddy’s wealth of issues which they presume arose from a genetic autosomal recessive disorder.

When I last met with Children’s Hospital I sat ready with a pen and paper and they breezily told me “not to worry!” they’d type up and send me some notes on the meeting. That was seven weeks ago. I’m trying not to run to the mailbox every day, but I was putting off detailing the medical here until I had some, um, details. So I can tell you what I can decipher in the autopsy, but things like the actual name of the bizarre protein in her system will have to wait. If you are truly interested and have a specific question about terminology, please ask. It’s probably in the report, and I just didn’t realize that it was important. Here’s the Big Stuff as I remember and read it:

Brain: Symmetrical, all parts there, patterns “normally formed.” HOWEVER, the brain literally fell apart during examination. Maddy’s White Matter was liquefied. In medspeak, from what I can gather, this is called “leukoenceophalomyelopathy.“ No, really. And if you google that you get a lot back on Rottweilers. (Omen, anyone?) There are some other good quotes from the brain examination; one I find particularly endearing is,“The cerebrum is a disaster.” There’s some chatter about Neuronal cecrosis, gliosis, yada yada yada. The pathologist concludes the brain exam with the pronouncement, “the clinical and pathological features of this infant’s illness are intriguing.” You can just hear the House writers cracking their knuckles. This sentence is followed with “It would appear that the baby had problems in utero.” NO SHIT! Glad we cleared that up. What’s next?

Eyes: Maddy was born with glaucoma. The eyes were sent elsewhere for exam, so I have no other information.

Heart: Enlarged, big time. For a six pound baby, her heart weighed as if she was 18 months. But, it was otherwise more or less normally formed – some asymmetry I gather. I’m a bit confused as to why this didn’t pop up on an ultrasound unless the muscle itself doesn’t present itself in an ultrasound. Or, it began enlargement in earnest after 32 weeks or so, the time at which I had my last ultrasound. Although the doctors wholeheartedly agree that Maddy’s host of problems and the severity thereof were caused by something shortly after conception, it is entirely plausible that many of these issues didn’t present themselves as such until much later. For instance, her thyroid was way underdeveloped, measuring somewhere in the 24 week range, and some of her bones apparently stopped growing around 34 weeks.

Bizarre, extremely rare protein found in system post mortem. Apparently this makes the metabolic people quiver, but all of the other standard metabolic tests are turning up negative. Protein sent off to Dutch guy who I gather will look at it and Maddy’s DNA when his grant money allows so I'm not holding my breath on a speedy response. It is nice, though, that he pays attention to such wacky stuff that affects so few kids.

While alive, Maddy had seizures, blood pressure problems, and edema (people are writing off the latter due to the obscene amount of stuff they pumped into her).

Before we removed her from support, we gave consent for the doctors to perform a tissue biopsy. This needed done while her heart was still beating, and means that any time they’d like to “grow” some genetic material, they can. They can send it to Holland now, and they can have it 10 years from now should the field of genetics advance beyond cloning yet more corn and cute cows.

Frankly, what amazes me is the amount of stuff that was right in this train wreck. The pathologist goes on about some syndrome that everything seemed indicative of, and then adds, “however, the lack of liver damage is unusual.” In another section, the report lists some more genetic possibilities, such as the lovely-on-the-tongue Hallervorden-Spatz syndrome, but then concludes “But all are associated with iron storage in the central nervous system . . . which is not present in this patient.” Despite even more blather on more syndromes to consider, the pathologist admitted “but this patient lacks many of the features of these syndromes.”

More to the point, “there is no evidence of intrauterine infection.”

For some reason what I find especially rough to read (as if any of this is a fun exercise) is the description of Maddy's external appearance as she lay there, as I remember her. I can almost smell her beautiful baby smell when I read “Scalp hair pattern shows a single centralized clockwise swirl,“ as I imagine running my fingers across her soft, fuzzy head. In contrast to the Brain portion of the story where you could just sense the doctor's building frustration as s/he reached the end of the Roget's entry on synonyms for “wildly fucked up,” the pages here describing her outward self are replete with poetry: “normal,” normally shaped,” "normally placed,” and my favorite, “unremarkable.” I substitute “beautiful” as I read, knowing they probably thought so too.

Google away, kids. Let me know what you find. I’ll join you when and if I ever get this damn write up with the protein “name.” And allegedly the mitochondrial results should be in soon too.

Monday, September 24, 2007

The Right Stuff

This has been the hardest post to write to date, because it’s been difficult for me to cynicize and snark about this particular subject. Oh for the love of Mike, I hear you saying, this woman has found a way to one-line her way through taking her baby off life support. What in all that’s holy could possibly be more serious, more difficult to verbalize and talk about? (I see you peering through your fingers. It’s like a car wreck isn’t it, can’t turn away?) I’ll tell you what’s rough to discuss:

Things that make me feel better.

Maybe it’s all so awful, that awful is the new normal, so to me it’s just comedy gold. It’s that rare blip of “hey. That wasn’t so bad,” that has me all tongue-tied, grasping for a way to put into words what just happened so maybe (maybe?) I could, you know, feel it again sometime. So, for your reading enjoyment, I thought we’d dwell a bit on the spoken word, and specifically, the words that made me feel a wee tad better.

People with a couple brain cells to rub together usually know what’s appropriate and what’s not in certain awkward situations, like when you find out a friend or relative is infertile, suffered from a miscarriage, or lost a child. In fact, if you’ve found this blog and have gotten through the sidebar and are still reading, it’s highly likely you’re not one of those people who stay stupid crap about these kinds of things without thinking. Let’s look at a few examples for the fun of it: should someone you know have a miscarriage (raises hand) it’s not a horribly nice thing to respond with adages to the effect of “well, it’s probably for the best,” or “it was meant to be,” or “God had/has a plan.” No, no, and um, not one I agree with or worship, no. Ditto if someone you know confides in you that they’re suffering from infertility (raises hand again, sigh) it’s not great to say things like “oh just relax and it will happen,” “give it time,” and the great zinger of them all, “maybe you weren’t supposed to be a mom.” It won’t (or fuck you), I have, and kiss my what? (Like, maybe you were meant to keep that infected appendix! Maybe you were meant to go through life with 80/40 vision! Maybe you were supposed to die of tonenail fungus!)

I know I’m preaching to the converted here when I tell you to avoid such no-no’s after discovering someone you know has lost a child: it was for the best, you’re young – you can have another; God had/has a plan; God only gives you as much as you can handle; bullshit, bullshit, bullshit. I’ve been very, very, VERY fortunate that the asinine comments lobbed in my direction have been extremely minimal. Sadly though, I have not been spared the occasional mindblowing doozy: at my six-week checkup (and yes, they still make you go even if your child dies. Tough, huh? Like you care at that point about the state of your vaginal canal) the woman checking me in saw on the computer that it was my six week check and said cheerily: “Oh, your six week check! Did you bring your baby?”

No really, she said that. Had I had my wits about me, the response woulda been “Why yes! She’s right here in my purse, hold on a sec . . . . . (whips out box of ashes).” But, really, I burst into tears, and so did she. In another case of brain fartage, a mom I know regaled me with a story involving an screaming infant, a holiday, nice clothes, and diarrhea, and summarized the story with “It was my worst night as a mother.” As my jaw went slack, I mustered every amount of strength I had to not utter, “You’ve gotta be fucking kidding me.” In yet one more moment of spectacular duh, a mom off-handedly told me that her 5 year-old son’s frog/goldfish/hermit crab/whatever had died, and she just couldn’t figure out how to explain it to him. (!) I pulled together my best “hmmm,” face, wondering if I should recommend some great kid’s books I have on why people die, and how kids feel when a sibling dies that might, might be a bit useful in his tragic case. And oohhh, how tough THAT one must be. To flush or not. Would that such an opportunity could arise so I could have such philosophical and thought-provoking discussions with my toddler.

I love the latter two moms of which I speak, they’ve been nothing short of supportive and caring, but you know, that’s no excuse. THINK before you speak people, please. Instead of going through the litany of stupid things you shouldn’t say (don’t’ worry – I’ll post the mindblowing crap with appropriate snark here), I thought I’d put up some helpful things you could say and do should you find yourself in the presence of someone like me. This is in no way intended as a backhanded slam to anyone I know personally reading this now – like I said, I’ve been insanely lucky to be surrounded by caring, compassionate, and extremely articulate and loving people. If anything, I have a feeling I’m simply validating and reaffirming what you smart readers already know. In fact, you might recognize yourself here. These are just the things I’ve decided I liked best, and want to take a few moments to be thankful for people like you.

BE HONEST. If you can’t think of what to say because it’s just so horrible and words fail you and you can’t stop crying, and all of the cards seem stupid, just say that. That’s enough, and it means a lot. A lot more than some stupid trite sympathy phrase you whip out when your neighbor’s cat gets hit by a car. If you have no idea what to do because you honestly don’t know what I want, tell me that too. Maybe I’ll say something, maybe nothing, but the fact that you thought about it and told me is wonderful.

BE PATIENT. My social anxiety was not unheard of; many grieving parents just tune out from everyone for a while. It’s not that we don’t like you anymore, or don’t deem you close and cool enough to share our emotions with you, or that we’re off making grief buddies and you’re going to get left at the curb. We just don’t want to talk. Period. There are a couple people in my life who – despite my absolute silence -- showered me with daily and then weekly email and phone messages – just saying hi, telling me they were thinking of me, sometimes just a sentence to say they still thought of me and loved me. Months later, they would write again, again with no pressure to write back, to fill me in, and let me know they were still there should I need them. There was never, ever an expectation for me to return the message. And when I started communicating again, these people were the first I reached out to. Hang in there. I may not need you right away, but I sure as hell will in 6-12 months.

A subplot of Be Patient is that yes, I received word of the generous donation you made, and I’m so overwhelmingly grateful and thankful for people like you. But if you thought those wedding gift thank yous were bad, try writing thank you cards for gifts given in memory of your child. I haven’t made it through the stack yet, but I will. It will be very late, I know. But I appreciate your thoughts and generosity.

CONTINUE TO CARE. So many people said they were sorry within the first month. And then it all dried up. The flowers and food stopped, the cards ebbed. Once we started communicating with a few people, they then assumed all was well and quit asking. The people who touch me most, who I most appreciate, continue to ask how I’m doing -- really doing – even now. One of my neighbors, still, after his cheery “Howya doing, neighbor?” will frequently put his hands on my shoulders, look me in the eye, and say, “how are you doing?” I know he wants to know the truth, and I tell him. The grief doesn’t stop after a month, or six. It’s nice if the caring doesn’t either.

USE THE CHILD’S NAME. It’s not “the baby,” “the incident,” “what happened to you,” or [silence. Cricket. Cricket.] My child had a name. And I love hearing it. One of my most memorable early grieving moments was when a fellow dog walker – whose name I didn’t even know – rang my doorbell in order to give me a card and a Grek Tear Jar (which she made, because she couldn’t find one anywhere to buy, lodry I love my neighborhood). She then asked me what my daughter’s name was because she wanted to know her name when she thought of me and her. I told her. We cried together.

BRING “IT” UP. If you feel up to it. Who knows, there may be other news like in my ongoing medical saga. I love talking about it and Maddy. If you’re willing to listen, I’m willing to talk. Know that it may make me cry, and that’s OK. Don’t feel like you’ve dragged me down, because believe me, I’m already there, and it has nothing to do with you.

LET ME KNOW WHEN YOU NEED A BREAK FROM “IT.” Should you bring “it” up, and I assume that you’re cool listening, you may find that it’s just tough. And it is. It’s a lot. It’s not pleasant. It may make you fear your own children’s well being, or shake your faith in the universe. But instead of leading me down the road and then pausing and very suddenly changing the subject (“So! We’re going camping! Did I tell you?”), just be Honest (see above) and tell me – “If it’s ok with you, can we change the subject?” I get that. Really. I don’t get segueing from my dead baby to the weather or worse, silence. One of my friends is honest like this, and I just can’t tell you how much I appreciate her willingness to listen, and her candor in telling me she simply can’t bear to hear any more right now. She always brings “it” up again by the way, when she’s ready.

DON’T TAKE YOUR LIFE, YOUR KIDS, YOUR UNIVERSE FOR GRANTED. I’ve created a few straw men over the course of this year, and one is that every other parent in the world just hums along without a care, thinking bad crap like this only happens in the movies and certainly not to anyone they know, and Children’s Hospital is one of those freaky out there places where conjoined twins go to get separated. In my sane moments I know this isn’t true; that many parents have undergone all kinds of bad stuff, much of it worse than mine. But then I overhear the extremely pregnant woman whining to her friend about how wretched she’ll look in those delivery room pictures and I just want to strangle her. Or prop her eyelids open with toothpicks and force her to read this blog.

I’m not telling you that you can’t complain to me; remember, I now do bad news really, really well. I’m totally here to bitch with you about your job, your car, and your homelife. I know all the bad words, I can lend you Kleenex (I carry it now in every purse, and every pocket), and flip the universe off with you. Just realize at the end of the day that there is something worse than finding out your roof needs replaced and getting your car towed in the same 24 hours.

Hug your kids. Live for today. Never complain (well, not too much at any rate) about your children doing something that means they’re alive. Give to your local children’s hospital, because behind those doors are kids just as smart and cute as yours, and parents just like you, and you never know when you’ll be in there, begging them for answers. And think. Think for a few moments about all the things that could possibly go wrong, and how fucking lucky you are to still have what you do. Taste your food. Revel in joy. Because you just never know when that minute will come that might take it all away.

Thursday, September 20, 2007

Science Lesson

I promised there would be medical information. A few words before I begin down this road, and yes, it will come over a series of posts so you can turn off the coffee pot, put down the notebook and pencil, and reshelf Grey’s.

Part of helping me through my grief has been sifting through the medical wreckage that was Maddalena’s brief life. I think this is largely because this is what she was really: a medical mess, and continuing to speak of the mess is to continue to think and speak of her. Which I love to do. It is all I know of her, Maddy of the tubes and machines. There are a precious few photos of us in the delivery room, all smiles and relief and tiredness, Maddy in just a simple blanket, before the hubcaps flew off the already loosening bus wheels. And even though these are the only pictures I have of Maddy without gear, I can’t bear to look at them even now, six (check that, seven) months later. It’s as if they’re a lie, that the baby in the photos wasn’t her really, and that certainly wasn’t me. It’s the very last few seconds of my “before” life, and I can’t bear to witness it. The photos that line my mantle are Maddy and her increasing collection of wires and whatnot, because that was the true her, the real her, the Maddy I came to love and miss every day.

But before you rip out the tissues, let me also say that the medical stuff is a wee bit fascinating. If I were to pick up a New Yorker and stumble across an article by Atul Gawande about a 30-something couple who shockingly and tragically produced a beautiful-looking yet profoundly rare six-pound genetic fuck up, I probably couldn’t put it down. Then again, I’d have a hard time putting down a Gawande article on gallstones or wart removal, so who knows? Feel free to put his down and don’t go copying and pasting my scientific explanations into Wikipedia is all I’m saying.

When an infant dies, pathologists et al look at three categories of causes of death: infection; some category whose title I’m forgetting but basically “accidental” things like cords wrapped around necks and freak aneurysms and people stabbing mom and all that good stuff you don’t want to contemplate but CNN apparently does; and genetic. I’ll talk more about the categories as the tale progresses, but note that pediatricians ALWAYS suspect infection, and genetics is about the biggest black-hole of infinite medical problems there is.

If you remember from high school, and I don’t so no judgment, genetics control things like what color eyes you have, whether you got uncle Bob’s prostate cancer gene, or whether you pee standing up or sitting down. The vast umbrella of genetic errors that could occur during reproduction include chromosomal problems, and the infinite number of things that can happen to genes themselves: mutations, translocations, dominant yuk that runs amok through families, and the occasional recessive garbage that two people who fall in love happen to both carry. These genetic miscues can lead to a number of outcomes, in our case they seem to be most interested in metabolic disorders in which the body doesn’t have enough energy to grow itself properly in utero or function postpartum. There are a zillion genetic combinations, and hence, a zillion number of problems that can occur. And as much as we know about genes nowadays, we don’t know it all. We can determine whether you carry the breast cancer gene, or if Dad has a funny translocation on or between certain chromosomes, or if two star-crossed lovers sadly carry the Tay-Sachs or Cystic Fibrosis genes, making their chances of having offspring with these disorders 1:4. But there are innumerable freaky problems that have not yet been mapped on the double helix.

Remember the blue eye charts from high school biology? No? Too busy naming your frog cadaver and giggling over the word “testes”? Yup, me too. So here’s a refresher: Mom’s got brown eyes, but carries a copy of the recessive blue eye gene. That means she has big B, little b eye genes, or Bb. Dad is the same, Bb. You draw a grid, and plug in the four possible outcomes of one of mom’s genes combining with one of dad’s, and get: BB, Bb, Bb, and bb. Big B brown eye gene is dominant, remember? It kicks little b’s blue-eyed ass if combined? So mom and dad’s kids have a 3:4 chance of having brown eyes, and 1:4 chance of having blue (bb). The ONLY way to get blue eyes is to inherit TWO little b’s. (Well, according to high school biology, but a physician I overheard in a sushi bar once claimed that this wasn’t entirely the case. I was too absorbed in my unagi to pay much attention – maybe some biologically astute person could sort that one out for me.)

After sifting through the detritus of Maddy’s genetics, and they’re still sorting (her genetic information as it were is presently in New York City (at my alma mater no less -- do you think this counts as a legacy admission?), Iowa, Texas, and Amsterdam. I like to think she’s well-traveled), the reigning theory at the moment is that Maddy suffered from a perhaps never-before-seen, or at least profoundly rare, autosomal recessive disorder. That is both Mr. ABF and I carry a copy of some bizzaro lethal recessive gene (we’ll call it little “f” for . . . oh please, you know me by now) that when inherited from both of us (ff) turns a baby’s brain into liquid mush. Because no one as of yet has seen anything quite like Maddy (“severe if not unique” was the theme at the postmortem), there is absolutely no way of knowing what gene in the tens of thousands it is. Thus, we were never tested because we didn’t know what on earth to look for (Bella apparently slipped through the 75% part, but she could carry a copy of this nonsense – she could be FF or Ff; the miscarriage I had before Bella apparently was not as lucky). Amnio just sifts through the chromosomes to make sure they’re all there, none are missing, there aren’t any extras, and there aren’t any major breaks. All of Maddy’s proved to be a-ok, both during the pregnancy and even during the serious looksie afterwards. It was this little f pair that she got by some shit roll of the dice that led to her demise.

Doctors, being lawyers in their other lives, cannot state anything “for certain.” They cannot rule out this being the result of an infection, although the pathologists at Children’s Hospital found zero indication of one despite their insistence that infection is the cause of nearly everything deadly in a baby, and Ockham’s Razor and all that, not to mention all of their looking again and again. Apparently in utero infections leave traces of whatnot, and there were none to be found. Also a bit odd to have BOTH an infection AND to be born with glaucoma. I suppose some babies are less lucky than others (and boy would ours fall into that category), but the docs tell us that glaucoma does not usually arise from infection, and that the chances of getting two separate but outstandingly serious problems are slim. Ditto for “accidents” like aneurysms which may (may) have cooked her brain in this odd way, but would be less helpful in explaining the super rare and lethal protein they found floating around in her system. So, to the best of their ability, they’re scoring this auto-recessive, and giving us at least 1:4 odds of having another similarly afflicted child.

But here’s the rub: should we decide to try and reproduce again (and believe me, there are scores of blogposts lined up about my infertility history and the agony of thinking about sitting down at the big table with the universe again and trying to roll some lucky sevens), there is no way to determine if the proposed future fetus carries two copies of deadly ff insanity until the baby is born. They don’t know what gene is responsible, so there’s no way to test for it. And despite the fact that Maddy was born with numerous, serious problems, NONE of them – not the liquefied white matter in her brain, the enlarged heart muscle, the glaucoma, the bizzaro protein – are identifiable via ultrasound or otherwise. To the perinatolgists who monitored my bleeds and placenta, and took some time to scope out and count body parts and take measurements, Maddy was a well formed, 4-chambered-heart, two-kidneyed, one livered, right-sized brain, solid heart-beating, no nuchal folds, chromosomally sound, measuring-on-target little girl. And believe me you, 1:4 when the 1 is another dead baby after 40 weeks of pregnancy are not odds I’m willing to play with. Gotta know when to fold ‘em and walk away and run like hell.

How rare an ff are we talking? We have some idea: Maddy’s information was shipped off to a guy in Holland who studies the bizzaro protein found in her system. IF (and this is a big IF) Maddy falls under the category of the disorder he studies, she will be one of less than 5 afflicted children in the world, and the ONLY one of nonconsanguineous parents. Nonconhuh? Maddy would be the only one whose parents aren’t related. All of the other ff kids (IF this turns out to be her problem) are from communities where people don’t leave much, so they tend to marry distant cousins. Mr. ABF and I aren’t even from the same ethnic background. So, the chances that we BOTH carry a copy of this f and that we met, fell in love, and reproduced is . . . um, well, basic statistics are failing me here but the current world population is up around 6 billion and with only 5 or so alleged ff kids, us being the only two parents to leave the mountain top . . . . let’s just say we have a better chance of getting hit by lightning twice as our plane gets slammed by a meteor while we’re on the phone confirming that we’ve won Powerball.

The doctors at children’s hospital, bless ‘em, are still looking for (and apparently charging me to explain) an answer to Maddy’s issue. Obviously, should someone in the wide world of genetics recognize one of Maddy’s problems and determine that it corresponds with the freaky little f gene s/he’s been looking at for that obscure med journal article, then we’ll know, and we’ll know what to test for. If this happens, we could test Bella to see if she’s a carrier (and if she is, she could have her future baby’s daddy test as well), and more to the point, Mr. ABF and I could test a future baby early in the pregnancy via CVS or amnio to see if s/he was afflicted too and save us a bunch of time and heartache and blog hassle. It would, in a sense, give us an answer. But the doctors have pretty much told us not to hold our breaths. They claim that when they show others Maddy’s autopsy results that a not-unusual response is “never in my two decades of [oddball neurological science subfield] have I ever seen a case like this.” In other words, we may never know.

Would an answer be nice? Sure, hell ya. In the way that I used to churn through calculus problems for pages to end up with x=.0267 and look in the back to discover . . . . lo! I was right! Relief. Order in the universe. Gratification. But would this be “closure?” I think if the docs had sat us down and told us Maddy had died of a gunshot wound, I’d still be here, still feeling just as crappy, still blogging away, still missing my beautiful baby girl.

Sunday, September 16, 2007

Baby Fat

I think we can all agree that death is never easy on the living. Even when my great grandmother died in her sleep at 100 I felt, well, badly. And this was, as far as deaths go, probably the absolute best-case scenario: feisty woman puts in century of life, has scores of descendants who worship her, lies down for her after-lunch repose and never wakes up. If I could choose my end, that would be it. Rest in Peace, Gramma H, hope you're getting Pirates coverage where you are, and sometime I'll catch you up on their cataclysmic demise since, um, yours.

Death, as most of us learn while growing up, happens in a certain order; namely, older people go first. Our first experiences with death usually involve great-grandparents and grandparents. As time wears on, and we enter "middle age" (oh good lord, did I just really say that?) we begin to eye our parents' existence with some trepidation. There are of course aberrations to the pattern, and while unholy to contemplate they tend to follow the script to some degree: young children left without one or both parents. Loved ones succumbing to horrible, painful deaths long before they should have to. Many of you, I know, have lived your childhood and/or adulthood without grandparents, and some of you, without parents or even spouses. It's the way (om), but it's an awful deviation, and I'm so sorry for all of your losses and your precious time lost with these people that you love.

But the order gets turned completely on it's head when children die first.

I'm not going to sit here and say that my experience is worse. I don't like playing those games. I'm very fortunate that I have a living child, a strong marriage, and a supportive family around me which is more than a lot of people who suffer from a close loss of any sort can claim. But I will vehemently state, with no apologies, that losing a child is a very, very different sort of loss with a grief process all of its own. Different to the point where a lot of people don't get and can't fathom what happened to us regardless of the numerous funerals they've attended.

Instead of looking back at a life, when a child dies you're faced with the loss and pain of looking forward. All of the milestones evaporate and you're faced with nothing but emptiness -- empty picture frames, empty "firsts," a black hole of an existence. Trying to grieve without memories to clutch is a downright impossible task. Children don't leave behind lifetimes. They don't leave behind children of their own to carry on and share in the mourning. They leave imprints, which their parents cling to like sand rushing through their fingers. Children are not only robbed of their lives, their parents are robbed of experiencing their children's lives too. It's a two-for-one special, in a way. But wait, there's more. If part of your life has been defined as being a parent, you've just been hosed. Your "job" as it were, is gone, and you're stuck on the metaphoric unemployment line filing forms for a new identity.

There is undeniable comfort in communicating with other parents whose children have died. For once, all of the elephants are in the room together, and actually want to discuss the taboo subject looming in the air. We want to know names, see faces, and hear the stories from start to finish. It's comforting to know that I'm not going crazy, that other people have the demented thoughts that I do, and it's a relief of sorts to hear that stupid people who make inappropriate comments drift in and out of everyone's life.

I must confess, though, I feel great distance even from parents who have lost young children. While I'm listening to another parent describe their heartache I'm simultaneously playing the comparison game. Don't judge: apparently this is totally normal, and helps in defining the parameters of one's grief experience. Frankly, I think if you were to gather a group of women who had all lost husbands to colon cancer that -- despite their overwhelming commonality -- they too would play this game, occasionally concluding the grass was greener ("at least she has children;" "her husband suffered for a less amount of time") and other times releasing a mental exhale ("Jeebus, was his physcian on crack?" "Thank GOD I don't have her mother-in-law"). I have indeed exhaled when comparing my experience to others: our doctors were fantastic, our hospital experiences as textbook compassionate as they could be, and the end of Maddy's life was dignified as possible given the nasty circumstances. But more often I find myself listening to other parents as though they experienced something completely different. Other parents can share holiday photos of their children, muster a smile when remembering a child's smile, note that the child's eyes were "just like mom's" or that their new offspring bears some comforting resemblance to the deceased. Some lament loss in relation to already-happened events: isn't a shame Johnny won't see his sixth grade class move on to Junior High; Susie loved Christmas, this would've been her fourth. Some parents can even reflect and draw on their child's personality: my son was always happy, he would've wanted me to be happy. My daughter was a fighter, she never complained once during her treatment, she'd need me to be strong.

If you lose an infant (or neonate as the case may be) you don't even get those milestones to refect upon, as meager as they may be. Maddy never cried, never opened her eyes. According to the doctors, it is unlikely she ever heard us repeating her name, reading her stories, and telling her we loved her. Given the state of her brain, it's doubtful she felt my hand clutching her tiny fist and smoothing her beautiful head of hair. I can't even claim to be thankful I got to hold her, because I didn't really. She was constantly, increasingly attached to machinery and undergoing examinations that made it difficult, despite the nurses' kind attempts, to hold her next to me. I did, but over the six days I'm willing to guess I held her for a total of two hours, including her death. I'd like to think she was a fighter, that she did her best to exist that week, but this is largely make-believe on my part as the respirator, medications, and two near-death experiences will attest. To be honest, I'm not sure why she was here at all, other than to torture me and to undergo some modest level of confusion and discomfort herself. Rather an existential conundrum, eh? Maddy appears to have been the proverbial tree falling in the woods.

To compound the loss of an infant (as if it could get any worse) (and isn't this turning into a lovely PoMo deconstruction) are the special physical impairments that nature bestows on Mom. To wit: a couple of breasts full of milk. Maddy never ate. They pumped a bit of sugar water into her through a tube, but that was it. What I discerned to be rooting movements of her lips the professionals dismissed as seizure activity (fucking everything was seizure activity. Bella's hour with play dough this morning is suddenly looking incredibly suspicious). But what does my body know? She's supposed to eat, so my breasts filled up with milk. And gamely holding on to some scintilla of hope, I dutifully pumped and froze in the off off off chance that my baby would someday need the sustinance. In the end, I'm left with a dead baby, a freezer full of little bottles (I oversupply, lucky me -- the nurses were downright amazed at my 6-day output), and two very engorged breasts. I donated the milk (who knew? Apparently they homogenize it), and then with no baby to feed, still had to pump every few hours and wear cabbage in my bra to let down. If you think pumping is bad (and boy, I do, and that's with a cheerful smiling happy live baby to feed), try pumping knowing the milk will never feed anyone. Try NOT thinking about your dead child (I read a rather gruesome mystery novel during let-down). You can almost hear the universe cackling while it pokes you in the eye.

And perhaps the most physical reminder of this extremely shitty happenstance is the baby weight. There are tomes devoted to losing the baby fat, many of them humorous and chillingly positive and uplifting, about what a drag it is, and how long it takes, and how breast feeding makes it melt away faster!, and nine months up/nine months down, and blahblahbabycakes, but I'm here to tell you facing baby weight without a baby is a slice of hell. As if you need any more reminding that you actually carried a baby to term that is no longer around, HERE are the 20 pounds and the enormous gut staring at you every damn morning. Just in case you forgot. It doesn't help remotely when your toddler points at your slowwwwwly deflating stomach and asks if the baby is still in there. Maternity wear, never fun to wear after having a baby, is now simply torture. (Remember when you wore these huge pants AND felt the baby move? Yeah, wasn't that great? What? Baby no longer moving? Did I hear those 10-yr. old sweatpants calling?) As difficult as it is to get out of your house and leave your head behind, it's impossible to escape your body. When you're trying to forget that you were ever pregnant, never mind the catastrophe that happened as a result, not fitting into your clothes is about the biggest self-esteem issue you could have. It's a daily physical slap in the face that you made a sacrifice, and got nothing for it. That you did exactly what you were told, and through no fault of your own, your baby is gone and bonus! your clothes no longer fit. As much as I want to lose this weight (see previous post on forgetting this chapter of my life entirely) I have zero motivation to do so. Especially when I see all the trim moms waltzing down my block with their strollers as I peer out through the closed blinds with week-old brithday cake in one hand. When the only reason to get up in the morning is the cup of coffee and a whole lotta cream cheese on a bagel, how on earth are you going to deny your psyche this one thing? How? Do I really feel like joining the gym and slimming down a la Angelina Jolie and joining the ranks of svelte and sexy mommies? Not so much. So here I sit, still unable to wear things that fit a month or two post-Bella's birth, wondering how much longer this body will stare back and torture me.

I don't often use the word "unfair" to describe what happened to me. It's sad mostly, and sometimes it makes me angry on some universal level, but I guess I don't think it's "unfair" as much as fucking "unlucky." But the boobs and body? That's unfair, people. If anything should come without strings attached, it should be death, and perhaps the death of a child most of all. Now if you'll excuse me, I need to examine this bill I received from Children's Hospital who charged me for a meeting where they explained the results of Maddy's autopsy. I know these people need to eat, but come on. Pass the m&ms.

Tuesday, September 11, 2007

Owen Wilson

From the side bar just to the right you can see that my web perusing isn’t all doom, gloom, and politics. I occasionally partake in the goss, and really, who doesn’t? I know the criticism: why are we paying attention to Paris Hilton’s prison togs and not the Troop Surge? Or Darfur? Or the minutia of universal health care? Frankly, I rather resent the implication that ingesting information on Britney Spears impairs my ability to recognize the seriousness of marines dying in helicopters over Baghdad as if this is a zero sum deal and intellectually I can only handle so much information. Or, worse, the way I choose to relax my brain is trashier (and therefore more memory consuming?) than someone else’s. I will join in lamenting the unfortunate blurring of “The Press” that covers celebrity garbage and “The Press” that does in-depth reporting on the alarming number of murdered Russian journalists (CNN, I’m looking at you). But hey, we all need to give our gray matter a margarita now and then, whether it be watching foreign films and reading art reviews, watching mainstream television while doing Sudoku, or having a cold one while watching the game and flipping through People. I like to think I bridge the spectrum as a wine-drinking, New York Times crossword puzzle-doing, NFL-watching, occasional goss reader. Furthermore, I happen to have enough brain capacity, despite the grief and Zoloft and Toddler, to pay attention to the war, name all the presidential candidates, and know that Willie Parker rushed for over 100 yards against the Browns last weekend. Nobel prize mental capacity or average ability to juggle a few balls? You be the judge.

ANYWAY. I’m scrolling down through Pink Is the New Blog looking for some David Beckham eye candy, and hit upon the news that Owen Wilson tried to kill himself. Brain spins. Wilson. Actor. There are brothers there, Alec, Bill . . . wait, those are the Baldwins. Oh yeah! Owen and Luke. Was Owen the one on “That 70’s Show”? No, I think that was the brother with the non-broken-looking nose. Owen appeared in “Royal Tenenbaums” and that Bosnia action flick which I actually rather liked. Owen. I know zippo about Owen. Nada. Not even the rumors. Does he drink? Smoke? Shoot up? Date? Date Gay/straight? Have a mug shot? No clue.

But I do know this about Owen Wilson: he is in a deeper level of hell than I am, and that is saying a lot.

In my darkest hours, on my absolute worst days -- the days my therapist calls me “inconsolable” – I fantasize about a cave. A cave that would appear on my porch that I could crawl deep inside of, curl up in the fetal position on the cold, dank floor, in the dark without a scintilla of light, and cry whilst undergoing some sensory depravation. A place where no one would find me, the phone wouldn’t ring, and the dogs wouldn’t need walked. I wouldn’t see the neighbor pushing her double stroller around the block, there’d be no house to upkeep, no shopping to do, no bills to pay. I wouldn’t have to explain to people what happened, or fake it. I wouldn’t have to force my way through the seemingly endless list of holidays I’m now facing without my child. I wouldn’t have to hear the news that other people get to bring their babies home from the hospital after having them. And I’d like to stay in there for a long time. Like maybe a decade. And then, after I had caught my breath and dried my eyes, I’d emerge into the sunlight, hopefully a bit thinner, and see if I could take it then. Essentially, I’d let all this “time pass” that people keep talking about but do it without interference so I could just get “there.”

My other fantasy on the really bad days is for a lobotomy. (The fantasy also includes a hysterectomy, lipo, tummy tuck, and boob job – you know, since I’m under anyway and they have the knife out and all.) I’d love to simply forget everything from May 2006 forward. Forget I was ever pregnant. Forget all the stupid conversations about naming the baby. Forget the delivery. Forget how beautiful Maddy was. Forget that awful week of bad news, and worse news, and the growing number of tubes and wires hooked up to my increasingly listless child. Forget the conversation on Feb. 18 where the doctors told us we were looking at hours to days. Forget her death that replays in my head like some awful ESPN slow-mo footage loop that I can’t shut off. Because right now I can’t seem to find a single damn good thing that came out of any of this, and I wish desperately it would all go away so I could be my “old” self again. (Correction: “old” self with perkier breasts.)

This is me at the very bottom floor. It’s a circle of hell that I wouldn’t wish upon anyone, and would hate for anyone to even contemplate or imagine. But after reading about Owen’s suicide attempt, I realized that there’s a whole row of elevator buttons below mine that I haven’t noticed. And the meaning of my metaphoric fantasies suddenly hit me like a metaphoric anvil: the reason I long to do a Rip Van Winkle or turn off part of my brain is that I want to stay here. Apparently sometimes I actually rather like being here, on this plane of existence, with the husband and daughter I love – just not all the time anymore. Pale skin or dead brain cells notwithstanding, after emerging from my make-believe locations I am curious to see how the story unfolds.

And part of my new Awful self is an ability to feel other’s hurt extremely well. Joy? Happiness? Excitement? Might as well speak to me in Swahili and hand me a plucked chicken because the “Huh?” expression will be the same. But pain? That I get. I suppose I could easily condemn Owen from this side of the computer and snot that he has a ton of bucks and didn’t lose a child (that I know of), so what does he know about being depressed? But I realize now that his reasons aren’t important, it’s what he feels. And that’s real. And it’s horrible. Owen’s near tragedy made me realize that I’m at the bottom, but apparently not the very bottom, and need to be grateful daily that I can experience my daughter’s laughter (and head-spinning insolence) and my husband’s smile (and dirty socks on the coffee table). And I feel so awfully sorry that Owen’s elevator is barreling south, his cave doesn’t have a back or wall, or a crack of sunlight to eventually return to, and his brain is so completely poisoned that he wishes it gone altogether. I honestly can’t imagine.

Good luck Owen, please seek help. Not the Britney/Lindsay kind I’ve been reading about either, the real deal. I’m thinking of you.

Saturday, September 8, 2007

The One Where I Explain the Title

So many normal slices of daily conversation seem so inappropriate now that I’m here: “How many kids do you have?” “Is she (pointing at three-year old daughter) your only child?” But one that is particularly thought-provoking and usually cringe-worthy is the ubiquitous “How are you?”

Right after Maddy died I suffered from extreme social anxiety. I couldn’t leave the house. I couldn’t talk on the phone, couldn’t email – even with my family. When I was forced to reclaim dog walking detail, I stared at the ground – I couldn’t bear to look people in the eye, even total strangers. I prayed I wouldn’t run into people I knew. Grocery shopping took every ounce of emotional reserve I had, and even then it was not uncommon to start sobbing somewhere along the cereal aisle. One of my friends astutely pointed out that it was a shame we as a society didn’t don mourning clothes any more to let others know why it was we had dark circles under our eyes, were continually weeping, or more to the point, why we weren’t carrying around the infant we were overdue to have just a mere few weeks ago. I actually thought seriously about getting a T-shirt made that simply read “My Baby Died”, figuring that would certainly get the point across, or at the very least, explain the flabby gut hanging over my waistband. It would save me the pain of getting those words off my tongue, and the ensuing (usually backwards) uncomfortable shuffle and stilted conversation of the person across from me. I also thought the people on the cereal aisle would then at least know why I was in a puddle and not assume I was strung out, or that my husband had left me. Those who found this an awkward subject to deal with could run, covering their children’s eyes, to the hills without engaging me first; those who amazingly can mete out compassion regardless of the situation could do so if they felt compelled.

What I grew to hate was the rote “How are you today?” lobbed at me totally indifferently from some sales clerk who really could care less what the answer was. I wanted to scream “REALLY FUCKING SHITTY! MY BABY DIED!” but thankfully decided this was probably rude, especially to dump on a total stranger, so I grew to rely on the oh-so-safe, “Hanging in there.” And for a while this was ok. But soon I realized this was a total lie. I was not hanging in there. I wasn’t even hanging. I was often flat out on my back in bed hoping that my toddler wasn’t investigating the knife drawer downstairs. I have no idea what it’s like to be gay and “in the closet,” but in a way I started feeling I was closeting my grief. For the sake of others I was trying to project the “ok” person, when really, I wasn’t in the least. And it hurt. And I guess on some level, I wanted them to know I hurt, and mostly, I just wanted to tell them the truth and not give a damn about how my answer affected them.

Part of my grief process (because there is no wrong way, right?), therefore, became brutal honesty. For the stranger who folded shirts or bagged my groceries, a simple “ok” or “hanging in there” would suffice most days, as I bit my tongue and swallowed the snark. But for those who KNEW, be it casual neighbor, friend, good friend, or relative, the answer became “Awful but functioning.”

Six months later, I’m still awful but functioning. The functioning part, I’m here to tell you, does indeed get easier. I can now peruse the carbohydrate content of multiple cereals at the grocery without getting verklempt, and most days can get up in a timely fashion and stay upright until my daughter falls asleep that night. (She doesn’t nap. Never has. Will probably dedicate a future post on this subject.) I’m still not on the shower every day plan, nor have I cut my hair or waxed my brows since February. I’m sort of back into caring about dental hygiene – if brushing twice a day, flossing once a month, and thinking about making a dental appointment is good hygiene -- but not so much with the dermatological care – if I wear makeup it’s a good day, and if I wash it off at night, an even better one. I’ve managed to secure a place for my three year old in a prestigious preschool, and I’ve somehow managed to survive potty training this summer. She can spell her name, count backwards from 10, and thank god, play well by herself. I think I’ve done ok by her, a few bad days in bed notwithstanding. She just waltzed into her first day of preschool this week with a simple “bye” and peck for mom as she motored off to discuss world domination with the child at the foam shapes table.

The awful part, I’m sorry to inform you, has not improved. It’s still just as fucking awful as the day it happened. Or the week it happened as it was. Sometimes I’m amazed I can function as well as I do while simultaneously feeling as though I’m being punched in the gut. I think the point of grief (or mine, at least) is to get to the point where the functioning becomes “normal” or “easy” again, and then eventually the “awful” starts receding. One of my books calls this process (though without my cool and catchy terminology) “integration,” and claims it could take two to five years. So! I have that to look forward to. In the meantime, I hope you join me for some cynicism sprinkled with macabre humor and the occasional dash of sentimentality. That and the rather fascinating mystery that our dead daughter seems to have presented the medical community. And it is fascinating, in an out of body sort of way, as long as it’s not your daughter.