This started as an online journal in early 2006. At the time, it was a carefree spot for silly diatribes and the occasional photo. Since then, I got pregnant with mono.amniotic mono.chorionic twins, learned one of our daughters had a heart defect, spent 11 weeks in a hospital room and 29 more days with Eva in the NICU and PICU before losing her. We have two children who are alive and thriving and one who didn't make it. For me, this has become that place in between.
Friday, February 12, 2010
Too Much Sorrow
I just think about that and I feel my skin go cold and my eyes sting. and my nose. How could it not? I just have to sit with that every so often. How does one come back from that place of horror?
At other times, the circumstances are less finite. Lately two women have come into our circle who have each lost one of their twins in utero and have each been given such horrendous information, such shoddy care that I want to rage at their incompetent doctors. I want to spit nails. Into their faces. One woman was told to abort her surviving twin because the baby may end up with the same defects that the lost twin has.
The other woman was told that she didn't need to see a specialist because she only had one viable baby now, so it was essentially a singleton pregnancy.
Wait. What??
Yes, yes, pay no attention to the dead baby in the uterus. Don't worry about the extra set of umbilical cords. It's nothing. really.
I have to write this here because there is no other place to express my disgust . I try to remain measured and constructive over "there" but they don't know about this. So, here, I can bubble over with fury at these shitty, dismissive so-called professionals who with their ignorance and neglect alter the trajectory of lives from this point to infinity. Those babies are never coming back. Those mothers are never coming back.
Even from my own small vantage point, I, too, am never coming back.
Friday, February 05, 2010
Changes and Challenges
Sadly, I get the most movement from the front torso region (more on that later), especially if I get to the bottom of my sports bra stack, like I did a couple of days ago. And lest my reader (no, that's not a typo) think I am utterly hopeless in this endeavor, let me share this: I have a talent, actually, for one part of the whole exercise thing. I am excellent at sweating. I sweat profusely and with abandon. I sweat when I tie my shoes. I turn purple when I reach around to do battle with my bra clasps. I, dear reader, am a world-class perspiration machine. If there was a cost-effective and portable desalination solution, I could irrigate California's Central Valley and solve their problems. No need to thank me.
But it's not all Nobel-worthy. There, too, is the dilemma of undressing and showering at the gym. Books could surely be written about this -- the timing, the strategizing, the order of clothing removal and textile reCOVERy. Angles! As I scurried today from the shower to my locker, I noted mentally that I had a very short window to dress before someone came out of one of the other shower stalls. I had to decide if I should maneuver the dressing-while-toweled approach, which is modest, but clumsy and potentially injurious, versus the dropping the towel and speed-dressing while still damp method, which is riskier but faster. I went with the latter and was yanking my sweater down victoriously just as the other woman emerged. She, incidentally, is a towel-dresser (better balance). The worst part of this for me is changing bras. At the risk of getting too graphic, pregnancy and breast-feeding and yo-yoing weight have taken their toll on the old ta-tas. Frankly, I need to do a little scooping action when applying the brassiere garment and that's putting it mildly. Sometimes it feels more like origami to tuck the girls in properly. I am a little self-conscious about this, if you must know.
So there you have it, the weepy, the drippy, and the droopy.
Tuesday, January 26, 2010
Despite Our Best Intentions
I didn't take the girls' survival for granted. Before entering the hospital at 24 weeks, I bought 2 preemie outfits to bring them home in. That's it. With MoMo twins, you can't help but be aware that there are no guarantees. Even at viability, even when you're being monitored, losses can happen. Throwing a heart defect into the mix of my already cautious nature and let's just say that I was, at a minimum, guarding against hubris. All this sounds so strange and foreign to me now, but I felt that humility and pragmatism and well-managed expectations required me to wait on the exuberant pink spending orgy.
Nevertheless, during those eleven weeks in a hospital room I had a little time on my hands. In addition to a love of terrible-yet-entertaining VH1 shows, I found a great deal on Craig's List for a double snap n' go and 2 Snug.Ride infant seats. All for $100! That's pragmatic, right? I wasn't tempting anything, was I? It wasn't even pink. My dear friend went and picked up the gear for me.
The day my surviving daughter was discharged from the NICU we brought one of the car seats to the hospital and found that although she met the weight minimum, the straps were nonetheless too loose even at their tightest setting. Par for the NICU course, they sent us on our way in late afternoon and told us that our daughter was discharged and they would not keep her another night. Nor would they let us take her home in our Snug.Ride. We spent that evening going from one store to another until we found a seat that would accommodate her puniness. At that point, we had no fewer than 4 infant seats.
So, when the reality that we would not be needing our double snap n go set in, we paid the deal forward. I took this photo for the post.
A woman brought her young daughter, pregnant with twins, to look at the gear. D handled the transaction, while I sat out of sight, but within earshot, nursing (and you'd be right to wonder what, exactly). Grandma asked why we were selling the gear. Silence, hushed tones and shortly thereafter, I could hear her asking if she could give us more money. It was one of those bewildering/well-meaning/clueless interactions. Seeing the picture brought back a complicated set of emotions (pain... guilt... hopelessness) and the memory of one of those surreal moments -- a clear moment like a splinter in the fog of early grief.
Monday, January 25, 2010
What Your Mother and the Broken Treadmill Have in Common
Today, I rendezvoused with the broken treadmill at 1200 hours for a quickie. At least, the treadmill told me it was a quickie -- sub-7:00 miles at times. That treadmill is like my mother, telling me I'm fast, when all other evidence suggests otherwise. The broken treadmill insists that I am worthy even as it screeches and groans under my ponderous waddle, even as the mirrored wall shivers and the very laws of physics mock us. Like my mother, I go to this treadmill when I want to feel good about myself. But if I want the truth, I have to go elsewhere.
Thursday, January 21, 2010
The Mommy Track
When I finally started working again, it was on a contract basis and the "dream" job quickly revealed itself to be notevenremotely serious/career-enhancing/likely to exist for long. So we thought maybe it would be a good time to get on with the second child thing. And voila, 9 months later Eva died. For all the times and ways I've turned those two words over in my mind, I've never before today really thought about the fact that from the time we decided to have our second child to the time we lost our third was nine months. We are so lucky in so many ways. I feel so damned sometimes.
But this was about the outside the house kind of work. After a few months of being at home with my surviving twin, I got to a point where it became essential that I go back to work. I took the first job I was offered. It was a big pay cut and a lot less of a challenge, but in my grief and eagerness to discount myself, I took it. I told myself that I needed a soft place to land and that I couldn't afford to fail. Both were true, but two years later, the place on which I landed feels so soft that I can't quite get my footing. It's starting to feel like quicksand. It neither provides me with the flexibility I would like to be available to the children nor does it reward me in the ways I need now.
But it wasn't until a good friend was effectively jettisoned by her employer after she returned from maternity leave that I realized that she and I had been mommy-tracked, she by her boss and me by, well... me.
Friday, January 08, 2010
Diminishing Returns
MWF is called "kickoff" and implies a certain organizational collaborative strategory planning orgy of business readiness and profit margin fireworks. In reality, it is drinking, eating, lectures, drinking, eating, lectures, free time, drinking, eating, drinking, fun and games, drinking, eating, lecture, free time, eating, drinking, eating, free time, fun, fun and drinking. I think I have pretty well summarized the week's itinerary. In these winter escapades (note how easily that word turns into escape), I mean "kickoffs," which are always the first week in January (you know, right after the holidays, first week back at work and school, just to keep the whole funness thing happening...for them), activities have included, bowling, deep sea fishing, super long zip fly through a canyon and other distinctly profitless (ad)ventures. In the meantime, we have been at home in sub-freezing temperatures trying to get back into the swing of things. Sniff. He comes home tonight and that's a good thing, cuz the house needs to be cleaned. And he's good at that.
Here's how we have fared without him:
Monday: D leaves and I resolve that we will have a peaceful and unharried week. Nutritious meals will be eaten and voices will not be raised. There will be no occasion for time-outs. The wine in the fridge will not be consumed.
Monday night: Reasonably healthy dinner is consumed, thanks to the spinach I snuck into a tray of baked ziti (with brown rice pasta - thank you Tra.der J.oe's!) made on Sunday. Children are relatively kempt and peace, however tentative, is maintained.
But, sleep is scarce. Son worries loudly to his worry dolls about "villains, sharks, Eva and death" but seems relieved and unburdened thereafter.
Tuesday: Alarm does not go off in the morning for the second day in a row. I thought I fixed this problem (yeah, apparently I did not suspect the pesky volume culprit)! I wake to the sound of the children playing by themselves because they do not want to "bother" me. All, however, is not lost. Nutritious breakfast (organic vanilla yogurt, with lowfat granola and fruit) is still prepared. We manage to rally and work together and we are fed, caffeinated (um, just me) cleaned, dressed, bundled and strapped into our car in under an hour. We are champions and we know this. Son asks, "Is this a record?" Satisfied, I tell him that it just might be.
Tuesday night: Pickup motorcade is a slog. Both children have gotten less than stellar reports from school. Disagreements between the children occur regarding dinner and the right of the other child to continue to exist. Mother compromises by offering a mix of Asian and Italian favorites on the same plate (a state of affairs that WOULD NOT STAND were D present). Hidden spinach is still nobly appearing in the roll of vegetable and I hope against hope that the shu mai has some cabbage or something mixed in there. Mother consumes wine. Highly anxious son ends up in mom and dad's room that night.
Wednesday: Mother is required to appear at place of employment at 7:30 a.m. Breakfast is coffee cake because there is no dilly or dally over delicious baked goods in this house. I think there may have been some bruised fruit also. We three stoicly trudge to the car at an unreasonable hour only to arrive at son's school before the morning care program starts. Trudge back to car and wait with heater on full blast. Daughter tells teacher at dropoff that she had cake for breakfast. Mother avoids eye contact with teacher and scurries away, arriving only 15 minutes late for work.
Wednesday night: Welcome reprieve from normal commute. Son is sullen as always when going to his sibling's school, suspicious and on the lookout for any potential injustice in the distribution of familial resources. Dinner is tater tots and chicken burgers. Vegetable = ketchup. Mother ponders beverage options. Voices may have been slightly elevated but only so as to make my meaning Quite. Clear. My dear friend visits, leaves at midnight.
Thursday: No alarm snafus as children cheerily wake me at 6 a.m. Based on the forensic evidence found later, they were probably fed fruit leather in the car on the way to school, but I can't guarantee that.
Thursday night: Back to the long slog commute. I can't remember what was for dinner other than the terrible Muscat I choked down with seltzer. You can be quite certain there was no vegetable...
Friday: I woke up with a cold and my son sleeping next to me. Saw snow on the ground and skipped the caffeine. Experienced palpable relief on the discovery that schools were open.
But then I got to work and saw an e-mail from my boss in which he indicated that he was going to be late because [the same system as my son's] school was delayed. What? Where is my son? I remember dropping him off! With an adult! I think! A quick check of the appropriate (read: not the one I checked from home) website revealed... PHEWW... we were both right. School was delayed, but the before-school care program was only slightly delayed. My son is probably playing shoot 'em up games on the computer as I type.
All this is to say, we really missed you, better half.
Tuesday, January 05, 2010
Vanquishing Platitudes Wherever They May Cower or Everything Will Revert to the Mean
That which doesn't kill you...
Everything happens for a reason...
It'll be okay/alright/fine...
Forgetting the expressions of blind faith, which leave me cold.
I want to know what that line means. On some level, I should accept it as meaningless, as all platitudes are, by definition. But what if there is some truth to it. After all, the phrase isn't "everything will be great" or "nothing will change" just that everything will be alright. Maybe it is a more humble and truthful expression than I give it credit for and it does account for the possibility of the unexpected even if the unexpected sucks. Maybe it is my understanding of what 'alright' means that needed an adjustment and the expression was right all along.
Further, "everything's gonna be alright" doesn't imply a deadline and so maybe over long horizons the majority of us survive what befalls us, even if some of us are slightly more diminished and some of us are slightly enhanced (a topic for another day). Is there some profound truth that over time everything and everyone -- including those who've experienced tragedies -- will revert to our mean, give or take a standard deviation? Is that what it means to have hope and to "be alright?"
Monday, December 28, 2009
Don't Tread on Me
This baby and her mother were there waiting for their ultrasound. I knew her mother, who was a neonatologist at that same hospital and we made brief and awkward small talk. This particular neonatologist is really the only one I clearly remember from our harried, desperate days in the NICU. I had met her before I delivered. She was the one who came to my room in the hospital where I spent 80 days to give me a consultation on the risks that 28-weekers face, even though I was already at 30. And she was the one who first uttered the phrase "myocardial thickening" in reference to my daughter, the one I had, until then, believed to be healthy. She was the one who, failing to notice that I hung from sanity's cliff side with only my fingertips, stepped on my hands -- carelessly, not meaning to hurt, but doing so nonetheless. She rattled through our life's circumstances like she was confirming a takeout order. She ticked off all our exotic ingredients like they were common condiments or ho-hum pizza toppings. Our heart defects were mundane, our rare flukes pedestrian.
Okay...Let's see ... that'll be two monochorionic monoamniotic twins, one with hypoplastic left heart syndrome, the other with myocardial thickening. Maybe a couple of VSDs on the side. Do you want to order open heart surgery with that? How about some breathing assistance? Yeah? Would you like that through CPAP or a ventilator?
Okay, I know ... That was really crass and self-indulgent and morbid. The point I am trying to make is that sometimes, just sometimes, your life, your very existence and that of your family feels reduced to a set of labels and discrete transactions. And when that happens, the sum of the parts does not equal the whole. Ironically, I think it was only Eva who managed to transcend the transactional orientation of our hospital experience. They pulled out all the stops for her and she died anyway. I can't help but wonder if anyone comes out without diminishment. This healing place, does it heal without scaring?
So... encountering the doctor brings me back to that desperation. When I see her now (which is a mercifully an infrequent occurrence), it feels as though I am still gripping a cliff side and she still doesn't see where she's walking.
Tuesday, December 22, 2009
Scary
Witness the Bro.oke Shields informational spot for La.tisse. That is some crazy, crazy. Because no matter how desperate I am for thicker, fuller, longer lashes, I am just not willing to suffer the travesty of redness, itching, weird hair growth wherever La.tisse comes into contact with my face or a permanent change in eye color. Cuz if you're going to head on up to your eyelid anyway, why not just go the extra step and apply the mascara if it is so stinking important? What am I missing here? It's not like the medication has a permanent impact, unless of course, you counting the increased brown pigmentation to your eyes. That is permanent. The eyelash growth, not so much.
So what's with the tirade, you wonder? A few years ago, as D and I were about to get married, I started to feel fatigued and I noticed my pee was the color of iced tea so I went to the doctor. Long story short, I was destroying my liver... with my acne medication. My liver enzymes suggested that I was close to liver failure, but hey, my skin never looked better.
Thursday, December 17, 2009
Atonement
Ehem.
So by the time we were seniors, with me enabling her the whole way, she was soaring above whatever I managed to feebly huff and puff below. Finally in the Spring of our senior year and on the heels of college acceptances (which I mention because I think it played a role), I started to come into my own ever so slightly. It's funny what a little acceptance letter from a school you really want to go to can do for the spirit. Suddenly I realized a certainly reality of our friendship and my role in it. And I didn't want it anymore. I didn't need it. I had the envelope. I was leaving and starting a new life in another state and [here's the rub] there was little consequence to my decision. So, I left her pretty unceremoniously. I came to the abrupt conclusion that I did not need that relationship anymore and that she would not change and I was done. I did not attempt to resolve or discuss. I actually remember feeling free.
It was not a shining moment of friendship or emotional maturity on my part. I went from being long-suffering to not being at all. I know that my sudden abandonment hurt her and I regret that. In fact, I know because she told me so at the wedding of a mutual friend a few years ago. It was such a dramatic moment for me that I am convinced I had a dream about it before it happened and I could scarcely sleep the night after. But even then, I didn't fully recognize my own shabby role. My response to her was a non-committal, "it goes both ways."
I hope that by now the universe has offset my bad behavior and that we're better friends to others than we were to each other.
Tuesday, December 08, 2009
Separation
Separation
by W. S. Merwin
Your absence has gone through me
Like thread through a needle.
Everything I do is stitched with its color.
Friday, December 04, 2009
Faith and Reciprocity
There. Done.
Pretense
Thank goodness I never have to be an adolescent again, cuz that kind of thinking is a travesty of self-respect and (at least as important) a highly inefficient use of finite brain power. Think of what I could have learned if I hadn't wasted so much time worrying about the size my butt compared with the next person's! Misspent youth, indeed.
[whisper] I do it now, though...
I size everyone up, but not according to their physical attributes (at least, not always). I am always calculating the level of pretense I must prop up on my shoulders. How okay does this person expect me to be? How deeply must I bury it? At times it feels (and I've used this metaphor before) like a piece of rotting meat that I have to carry and that I have to hide. The few people and places where the pretense of okayness is abated for a time enable me to just put it down. The relief is real. The change is palpable. Because hiding it is hard. It stinks, after all and so the schemes are often elaborate and the effect... odd and odoriferous. Come to think of it, that's me in a nutshell.
It's as exhausting as always believing that you are the fattest and ugliest (....and most broken....) person in a room and always checking to make sure.
Tuesday, November 10, 2009
Panic and the Sublime
I was abruptly brought back to that moment of weightlessness, when your child's life is out of your hands. It's a fork in the road. Your child can be returned to you or the very worst thing can happen. Those are basically the options. In the life BE (before Eva), I always knew that latter prospect was out there in the mist of possibility and yet my reaction in those moments was to basically believe in a good outcome. But yesterday, I remembered the last big fork and I couldn't ... despite the fact that surely most panics end well.
I was thinking about this fork-in-the-road idea last night as I was frosting D's birthday cake and later as I was falling asleep. Maybe for that reason, a merciful thing happened: I had a sublime, euphoric dream about Eva surviving. In the way of dreams, she just was discovered after being dead a few weeks. She might have even been under the bed, not sure. In any case, I picked her up, put her to my breast and, given the effort of raising herself from the dead, she was hungry and nursed beautifully on her first try. But because I had so much milk for her, I did overwhelm her a bit. She sputtered and I burped her. But after that, she was all smiles, beauty, pure light and unqualified joy. It was a gift and I overslept trying to get back to it, to her.
Friday, October 30, 2009
The Right-Born King of England
A few months ago I wrote about the a stressful time we were having with the boy. In the Spring it looked as though he had ADHD and we struggled mightily with what the ramifications of that diagnosis would be for him. At the time he was in a Montessori program. At the time he was seeing a counselor. Well, he got kicked out of that school and we found a new therapist for him once it was clear that his former therapist was in favor of medication as an immediate recourse despite our feelings that meds were not yet called for given his age and our belief that underlying his behavior was some serious anxiety. At the very least, we felt grief and anxiety should be ruled out completely and other techniques applied before moving on to medication, which seemed extreme to us (even as our nerves were fraying from the stress of it all).
All through the Spring and Summer I wondered (okay fretted) what the Fall would bring for the boy. We enrolled him in our neighborhood public elementary school for Kindergarten. We shifted our schedules to accommodate his activities and to limit daycare. He would have Karate 3 times per week after school and would also be in our town's soccer league. The boy was excited about going to his "big school" ever since his first visit in May (incidentally that was just days after he was kicked out of his Montessori). And the boy loves playing soccer. And he seems to be getting a lot out of Karate, even if he is sometimes ambivalent about it. And his visits with his doctor, well yesterday he asked if he could start going twice a week (oy! my calendar and my wallet ache at the thought).
So yesterday, when the man went to the boy's parent-teacher conference at school, I had occasion to reflect on the past few months, on that diagnosis, on the pain and anger I still feel when I think about how his former school dealt with us. Because here it is -- our children are the best of what we have to offer (at least, I believe that my children are the best of what the man and I have to offer), so when the boy was jettisoned by his school after we did everything we could think to do to engage with the school and improve the situation, it hurt me deeply. Not only was my fragile hope dissolved, but my son's potential was dismissed. I'm still not over it all these months later. I think frequently about the boy's teacher looking me in the face and telling me that Eva's death was "in the past" and I shudder at the callousness and stupidity of such a statement. Babyloss brings some cruel garbage even from the well-meaning, but it sometimes it reveals that some people (and I'm going to try to show some restraint) are, in fact, not well-meaning. For me, particularly coming from a teacher, that was the worst thing. And while I'm on this particular nerve, why would a head of school tell a parent that a teacher came to him to complain about the parent's child? What possible purpose would that serve? Perhaps it was just context for the words that followed -- don't bring him back.
In contrast to the unresponsiveness of our private school, every call made to our public school was returned within 24 hours, before we were ever enrolled. And the boy's teacher? Hallelujah! We hit the jackpot. When the man told her about Eva, she said, "I'm so sorry" and "I'm glad you told me. Thank you for being so open." So, 6 months ago, the professionals around the boy wanted to medicate him. Now, those around him do not think he has ADHD (though clearly he is impulsive) and agree that 5 year-olds should not be medicated. For once, we listened to our shared gut. For once, it seems, we were ... right? Okay, at least we did not make a horrible mistake. We think...
Thursday, October 29, 2009
8 Years of Married Bliss
Yeah, me neither.
Wednesday, October 28, 2009
Pressure Cooker
Shh, shh, shh, shh is the sound also of my longing escaping when I can no longer contain it in this body. When my knuckles are sore and my eyes are bleary from the effort of punching down my desire for Eva, sometimes I just have to say something. Today I asked D if he wonders what it would have been like. What a bore I am! What a tedious refrain that one is! He says, "it would be harder." Yes, it would be physically and financially harder, but emotionally... you'd never hear me shh, shh, shh, shh again. And maybe my red paint would stop peeling off.
Thursday, September 03, 2009
Softness against the smell of plastic
Some days I can't imagine that I will have to live without you for another 35-50 years or more. 29 days is not nearly enough. I wish you were here still. Where is the miracle of your survival?
I tried to talk about you last night to your twin. I love you and I don't want you to be forgotten. Daddy said you're too young, your sister is too young to be saddled with my grief. Maybe I am trying to get her to carry it with me. I am permanently diminished by your absence. My soul had an accident, a horrible disfigurement. Small strokes, tiny seizures, imperceptible shadows of death... in the NICU, PICU. I didn't go to the burners, to the morgue. I will never touch your sweet skin again. Softness against the smell of blood and plastic.
Thursday, August 13, 2009
2 years, 4 months, 9 days
I am waiting for that moment of trancedence that somehow justifies or mitigates this impossible state of being. The pain is renewed so often by so many innocuous situations that I wonder how much longer this can continue before my despair smashes everything around me.
Recently my coworker's triplet grandsons were admitted to the hospital with a mysterious presumed virus. She related that her daughter saved one of the boys by recognizing he was unwell and taking him straight to the hospital. My friend, who is no stranger to stuggle, also managed to save her sick child by insisting that her babies co-bed and by never leaving her side. Although no one intended to suggest that my parenting was inadequate, I have not been able to shake the feeling of abject, fetid failure. And that's all I can say about that right now.
Monday, August 10, 2009
Close the window
Lately, two stories about mothers who saved their babies have revived my despair and guilt. I was such a shabby, useless person. Maybe if I wasn't she would have lived. Maybe there's is an evolutionary component to this whole thing. If I had been a stronger member of the species...things might have been different.
Monday, June 01, 2009
The thoughts that come unbidden
Wednesday, May 06, 2009
What now?
But after seeing the boy for a few months now and after doing 2 different sets of evaluations with him, including one with a school psychologist, it seems we're headed for an ADHD diagnosis. It's a bit of a shock, but we've been hearing the term suggested to us for a few weeks now. The surprise is that the boy's therapist went to school to observe the boy in the classroom. She called the man and told him that the boy's behavior at school was terrible. After several weeks of an upswing and not getting bad reports, we feel knocked down by this. We have had no indication from the school that his behavior had deteriorated, but then again, they are non-responsive, to put it politely. The boy's behavior at home is generally not bad, but lately we've seen the difficulties pick up there also. So it's not totally out of the blue that he's having more trouble at school but the severity is surprising. And the therapist said that the other kids avoid him. She seems to be suggesting that we get him medication, which we are loathe to do. She seems to imply that his self-esteem will suffer because he will be ostracized if he's left to continue without meds. But we don't want to deaden his creativity and ability. I don't know... I feel afraid. I feel as though we can handle home, but we're not always going to be at home. He will have to find a way to get along at school. somehow.
Friday, May 01, 2009
New Beginnings and Endings
The boy has started bringing home readers from school and reading to us, which is a really wonderful thing to see. In so doing, he is taking another step toward independence. But he's not quite ready to fly the coop just yet. On Wednesday, I went to our monthly neighborhood ladies' event for the first time. We just moved January 30th. I wasn't invited in February. I couldn't make it in March, but this time I was sure to go. The boy bravely let me leave and told me that he wasn't too worried that I was going to Ms. S's house, as long as I came back, gave him a hug and kiss and woke him up to tell him I was home. The next day, he told me that when I leave, he worries that I will die. As hard as it is to hear that and to know all too well from where it stems, that he can articulate his anxieties is a new and wonderful thing.
Now, for the "endings":
The girl, who has had vague interest in and access to a potty for several months, has finally made a *product*ion of it. Until this week, she would see the potty, and occasionally she would sit, we would cheer, and she would stand to start the process over. Clearly, we had misplaced the emphasis.
Well, while we have a potty seat that she has easy access to because it is on the floor, we also have a portable seat that can be used over an adult potty. This one has the added appeal of being festively festooned with Sesame Street characters -- Elmo, "Big Birdy," Cookie Monster and Ernie, to be precise. We have tried to play it cool on the potty front, so this folding seat sits atop the tank in the kids' bathroom waiting for inspiration to strike. Well, it struck the other day! The girl requested the seat to be opened and we placed her on it. She tinkled! Not enough to darken the water at all, but we heard it! Honest! A day or two later, her confidence bolstered, she tried the floor model. She made a little noise. We cheered! She made a little more! We expressed our pride, our adulation, our glee at all that emerged (mostly it was gas, mind you) and we're very much hoping to make a habit of it. No pressure...
Friday, April 17, 2009
Certainty in a time of turmoil
And sometimes, when you're floating along, you need to. But then again, sometimes the data is too general and what happens to you, too specific. It's binary, not a probability.
Facing Facebook
Maybe on another layer, I don't feel successful and being "found" at this point in my life is disappointing to me. I don't know where I am. I don't really know what's next and I feel as though I have wasted so much time.
But I joined. I entered as little information about myself as possible. I just joined so that I could see pictures of B's new baby. Maybe I'll deactivate my account after that. Or maybe I'll face the fear. Hey, maybe I'll learn something along the way. After all, the MoMo site has been very good for me. Maybe another toe is ready to dip.
Saturday, April 04, 2009
Sestina for Eva, Two Years On
Sestina for Eva, Two Years On
Two years have passed since you were born with your twin
On every day since I have cradled your heart
A garnet sliver inside your open chest sewn together in blue
Plastic which was your world – isolette, tubing, the smell. I mourn
For all that we came so close to having -- the memory?
A lump of sand I can’t choke down. Naomi, your other half
Thrives but too there is the howling hollow spaces your absence, your half
Leaves unwhole. At 18 weeks we first learned of our twins!
You lived only 21 more and how I wish I could have more memories
Of your beauty, more than just that night before open heart
Surgery (the first), before the car accident, before cardiac arrest that morning
Before your body swelled, called for mercy and released you to the blue
On the good days, relatively, I imagine that you are soaring in the blue
Sky, your bright eyes free of pain and plastic. The other half
Of the time, I think I would take you in any form and mourn
The lost chance to hold you with your brother and your twin
for even one moment as the family of five that is my heart’s
very beat if not the picture in my addled memory.
One part of me is pulled to you in memory
One part to hope, the pieces of my cracked soul in red and blue
The veins and arteries that are tentacles originating from my heart
boring through everything everywhere, splitting into halves
and dividing against themselves creating more twins
multiplying, amplifying all that we’ve celebrated and mourned
Only now can I finally see a morning
Bird soaring and I erect it on my shoulders into a tower in your memory.
In time we will tell Naomi that her twin
Flies so that she will never feel alone as long as the sky is blue
We spin and weave mythologies of you in trying to fill this cup to half
Fullness --for a start-- and grow the left ventricle of your heart
In another universe or dimension perhaps your heart
Is whole and beating. And in that place, I need not mourn
We are complete with both halves
That were never divided. There a book of memories
Is written about two girls with my curls and eyes a kind of blue
Touching as they were for 34 weeks, 6 days, inside one amnion, twins.
I will, to eternity, hold the memory of your heart,
Covered in the blue of an infinite sky in morning
You are half of my world, twin to the earth on which we continue.
Thursday, January 08, 2009
It has been 21 months now, without you. When your tiny body finally quit, you broke my heart, my sweet and beautiful girl. Every day I claw at the injustice of life without you. But when you broke my heart, you opened it also, driving me relentlessly to want to be worthy of you. If I couldn't be your mother for more than 29 days, maybe I could keep you alive in other ways -- in my soul, for certain.
Monday, August 11, 2008
Moving wrong along?
While most of my brain recognizes that the boy is one of the children who did survive and thus deserves to be able to take advantage of opportunities that arise, there is a small part of my brain, dedicated to the proposition that all children are created equal, that is tortured just a little by the fact that we're making this lemonade. I feel disloyal to my girl. If I had the choice, I might choose differently. I don't have the choice.
Wednesday, August 06, 2008
Oh no! A budding fashionista?!?
To celebrate the occasion, the girl showed off her exploding vocabulary (which now includes yes, no, ball, duck, bye-bye -- all exclaimed with passion and emphasis -- if not the correct pronunciation) with a new word. As we were getting ready to leave this morning, I took the girl to the living room and she clearly anticipated my intentions because she pointed to her bin of footwear and exclaimed "Sthoo!" which could only mean one thing. Baby needs a new pair of ... [word of the day]
This I [Don’t] Believe: The disempowering nature of “bootstrap” cliché
Whenever life challenged me as a child and young person, I went to my closet of “go-to” aphorisms and wrapped myself tightly in one or more, depending on the situation, the depth of its chill. Through every setback or disappointment, I would bury my face in the softness of “it is for the best” or “everything happens for a reason” or the truly heroic, full body cashmere sweater of “that which doesn’t kill you, only makes you stronger.” Those cloaks stood me in good stead until now.
Then last year I watched one of my identical twin daughters die in the aftermath of 2 open-heart surgeries. It was the last and worst trauma in a very complicated pregnancy and a doozy of a short life. Over a year later, I keep trying to go to that closet but none of those platitudes fit anymore. They’re garish and abrasive in the light of the “new normal” as bereaved mothers call it. I can’t take comfort in “think of what you DO have” and won’t even touch “well, at least you still have one.”
But it is “that which doesn’t kill you, only makes you stronger” that I keep going back to, keep trying to use to cover the rawness of my new skin. I want it to be so. A little strength would come in very handy, in fact. I want a heroic happy ending wherein the devastated but persevering mother goes on to channel her agony into something that makes the world a better place. The problem is that I am not stronger, not yet anyway, and all I have to show the world thus far is this essay. So, for now at least, I am donating a closet full of easy-care clichés for something more minimal.
The new garments, the ones that seem to fit after shock and anguish have abated somewhat are not as thick and not as soft, nothing ever will be again. But though the chill still passes through, one can find a little warmth in “be as well as possible,” “I am thinking of you” and most importantly “I have not forgotten her.”
Friday, April 25, 2008
Long in the Tooth
I am and have been to varying degrees of success (and failure! I am the rare woman who's actually managed to GAIN weight since delivering the girls) trying to get back to my fighting weight. I am a long way off. I guess an unexpected consequence of having babies and losing baby is that I have almost no vanity left. Who cares about cute clothes and saggy deflated body parts under the circumstances. It's a little freeing, at least. I care to the extent that D has gotten into very good shape and I want to hold up my end of the bargain, but clearly the circumstances are a little different for me. Nevertheless, a good restrictive diet seems to be in order and will add the benefit of just a little bit of self-torture, which is called for!
Friday, April 11, 2008
Loss Begets Loss
Ironically, that realization (that loss begets loss) is something I've gained, something that has emerged from the vacuum. And it is this understanding that is enabling me (among other things) to make a little modest progress. Credit must given to the wise mothers I've started to meet in the virtual vacuum, which it must be said, is something I had not placed my value in. It is only hard-won humility and utter desperation that brought me to open myself up to others in this way. But in the absence of any other alternatives, I spent the time to find others still coping. I have been impressed and moved by the grace and thoughtfulness I've found on the CLIMB message board, eLimbo. How about that?
Thursday, March 27, 2008
Lessons Seeped In
1. A sure way to lose friends and alienate people is to mention your dead baby. Grief is inconvenient and unwieldy and you should really try to keep the cover on it. It's not that they don't care. They do, but they want you to get the whole thing over with so everyone can go back to the way things used to be. And didn't they show up for your service? Didn't they graciously accept your misery before you even understood enough about the situation to be miserable? Whose fault is it that you were so in shock for the first months that loss had not yet come to define you, settle into your very bones until long after all the friends and neighbors had packed up and left?
2. Loss is a menacing trickster. One day you may feel the weight lifting ever so slightly, but just as suddenly (and surprisingly) as that feeling appeared, the tractor of trailer of sorrow will hunt you down and level you at full speed.
3. Time is linear but grief is not. Time may heal most wounds but the death of a child is surprisingly immune to this form of treatment.
4. Right after Eva's death, a nurse told me that men and women grieve differently. At the time I thought, "she doesn't know us." Apparently, she does.
5. I thought I cared about my child's "quality of life." I don't. I care about her life period and know that I am no judge of its quality or lack thereof.
6. No matter what choices I made, I would have regrets. Regret is one way of pretending I had some real control or say in what happened. If I could go back and undo or redo, I would only replace my current list of regrets with new ones. This is seemingly the natural course of motherhood.
Wednesday, March 26, 2008
At this moment
Almost a year on, I can almost smell the plastic tubing and the blood. I can feel your warm soft skin, your wisps of hair. There has been nothing worse for me than this feeling. It used to be that I cared about quality of life. Now I only care about life. I would take you in any form. Not that I want you to suffer, but I want you here and I am no closer to peace and understanding, no closer to resolution.
Monday, February 04, 2008
10 months
I miss you still. I don't feel as though I can talk to anyone about you without feeling guilty. I'm not sure where I can turn, so I'm turning to you directly. Maybe the energy of you and my love for you have combined somewhere in the universe. If only. Eva, when I see your name, I am paralyzed. Eva, when I think of you, my throat constricts. I am sitting at my desk at work and I cannot do anything but long for you and try not to let that longing crush me.
This weekend, I baked cookies and ran for the first time with your brother and crawled around the floor with your sister, teaching her to walk. We watched the Superbowl (or part of it) together. Every good thing is diminished without you.
This weekend, I kept thinking of our drive to the hospital while you were dying. Your absence is the worst sort of violence.
Tuesday, January 22, 2008
Big Days
The girl started daycare full time today. After weeks and weeks of looking for a nanny, we finally accepted the fact that we needed to expand our search. We found Ms. E and her home daycare. She has 3 other kids -- her daughter and two siblings. I hope the girl does well there, but I suspect that we will be the disease vector, not the other kids. We'll just have to see. I hope perhaps we make it until the girl can go to Win.wood. Otherwise, we may have to go back to the drawing board.
Life is for the Living
Well, last year the boy's birthday party was a few weak cupcakes eaten in my hospital room and if that doesn't suck, I don't know what does. So this year....
Fancy-pants cupcakes from a bakery in a superhero theme at school. Thereafter, we'll be painting t-shirts. He will then be taken out to dinner at a restaurant of his choice. He chose Red Ro.bin. At some point, he'll get his present from us, a digital camera and when we get home, he'll hopefully see a big box on the doorstep -- a new blue electric guitar. And, on Saturday, we'll have a dinosaur-themed party at home. Unfortunately it will be mostly grown-ups and babies, but so be it. I hope it will be a birthday worth keeping in that steel-trap of a brain he's got.
We're all about onward and upward.
Tuesday, January 15, 2008
You don't know the half of it
So making it news, disclosing to new people that Eva lived and lives still in me is difficult, if not impossible.
So when a new coworker told me that she does not envy me in my working motherhood, I couldn't help but think, you don't know the half of it. I am trying to mother a dead girl.
Wednesday, January 09, 2008
Your Eyes and Mine
Monday, January 07, 2008
9 months and counting
Eva, what I wouldn't do to have you back. I finally sent myself a photo of you that I took on my phone. Your eyes are open and I am afraid I might lose the phone and thus lose forever the one picture of your open eyes that I think we have. I've never felt so close to the edge of breaking.
Wednesday, December 19, 2007
A few of my regrets
2. I didn't get to hold both my babies at the same time.
3. We were never all in the same room together.
4. I didn't bring you home alive.
5. I didn't hold you while you died.
Friday, October 19, 2007
The American Idea
My parents are immigrants and when they got here, they (like all immigrants) hit the ground running. In raising me, they imbued my consciousness with all the things we all assume when we think of this singular idea of our country. It is, after all, the essence of the American identity, which I embodied for them. They told me I'd be the first woman president of the US (though mercifully it seems I might be beaten to that punch). I was told in school as evidence of my specialness that "God don't make no Junk!" For me, the takeaway was that a future dutifully-planned and carefully-examined would lead to a good (i.e. stable, prosperous and happy) life.
In the wake of my daughter's death, I think that my utter disbelief and disappointment is in part a response to the horrible realization that I won't have a straightforward happy life. The most basic assumption about my path, no matter what equivocating I might have done on the surface of my consciousness is shattered.
Wednesday, October 17, 2007
For the Memorial I didn't know existed
Hi. I'm Audrey. I would like to share the story of my daughter Eva with you.
In this place of white-knuckled anticipation, I spent the last 11 weeks of my pregnancy waiting for the birth of my daughters. They were monochorionic monoamniotic twins, meaning they shared an amniotic sac, which is a dangerous, albeit cozy way to spend the prenatal period. Complicating matters further, Eva was diagnosed with a complex heart defect called Hypoplastic left heart syndrome, meaning her left ventricle was underdeveloped, which is fatal if left untreated.
In this place of redemption, my daughters were born at 34 weeks, 6 days gestation, a time of my choosing, offering a tenuous balance of risks. They were smaller than we thought they would be, but they surprised us in other ways as well. Most notably, Eva's heart was in far better shape than anyone anticipated in utero. She was not treated as a hypoplast and the 3-stage surgery that seemed a certainty no longer was. Over the first days of their lives unfolding, we received the best diagnosis possible, short of "Oops, did we say there was a heart defect? Our bad." That said, Eva's heart was not normal and she still required a surgical repair, but a less drastic one than we'd been prepared for. We were eager for her surgery. In the days leading up to it, Eva was starting to struggle to breathe and we wanted to get past that phase and have her on the road to recovery. Onward and upward! The night before, Dave and I were with her in the NICU, there were a number of people there surrounding us, we were all so positive and happy. I was holding Eva and she was happy to be held by me, I think. We had been at the nadir for so long, that we were anticipating relief at the upswing we thought we'd be starting.
Then the next morning, day of surgery, I had a minor car accident and failed to make it to the hospital in time to walk Eva to surgery. I was calm about it because I never seriously considered that there might not be a happy ending. After all, the doctors had never seemed as confident about Eva's chances as they had the night before.
But, in this place of avalanches, Eva arrested on the operating table before any repair had been done. It was, of course, one of those terrifying transformative moments. The happy calm of the staff surrounding and supporting us became the sounds and the sights of the center ceasing to hold in an outcome we never suspected. I will never understand why but with that catastrophe we began the process of losing Eva and the discovery of what a nadir really feels like.
Later, there was another arrest, another operation, blood, kidney failure, lung collapse, horrible swelling. Torture, in other words. We just didn't see it. We just believed our baby was a fighter and would make it and so we didn't do our basic job. We didn't protect her or save her or even hold her while she died. Only after.
And in what now feels like another spectacular failure of mothering, I stayed home the day before she died. I had gotten a cold and I didn't want to risk getting Eva sicker. She had a long road ahead of her (we thought) and infection was her biggest risk (we thought). So, I stayed home. Dave was there and reported back that she had had her best day post-surgery. Until.
"I don't think we can get her back" were the few words that ushered in the vast hollow of life without Eva. Once we got the phone call summoning us to the hospital on that night, I felt as though I was standing between two sets of train tracks. At the moment of her death, I felt as though trains were passing on either side of me, overwhelming me, threatening to level everything in our life.
In her 29 days here, in this place of possibilities, Eva fought like hell. Even before she was born, she revealed herself to be a tough little kid. She was the one who pushed and kicked and squirmed during all the sonograms and non stress tests. She climbed over her sister at one point, not content to keep to her side of the uterus. Once she was born, the precious few times we held her she sank into our arms, telling us that she needed us and causing us to recognize that she was more than her tiny mass. She was 4lbs 9oz at birth and never really got any bigger. She endured so much and I regret it all. We never questioned the path we committed her to until its futility became clear to us only after she succumbed to trauma after trauma. But we were just accepting what had to be done to have her home with us. We believed absolutely in her recovery, so much so that it was 3 or more months before the shock of her absence finally gave way to despair. I remember saying to Dave the day she died, or maybe the day after, "I miss Eva" as though she were away at camp or visiting Grandma.
In solitude, I wake every morning attempting to map the boundaries and terrain of grief, looking for its edges which don't seem to exist. I am trying, have been trying to put words to a situation in which words fail utterly, and yet I want to talk and could talk for hours. There are so few opportunities to celebrate and mourn Eva openly. At first, our friends and families surrounded us with love and support. Basking in that warmth, we initially sought out people to see and talk with. But we had no idea how quickly time would force us to close the book on Eva, at least outside our closest circle. We've become marked people, the ones with the dead child and few if any dare breach the wide perimeter of pain surrounding us. Eva's absence is a tangible thing, a large piece of cold, raw and rotting meat. I can't cook it and I can't eat it. It's an albatross that is to be carried.
If you didn't know about Eva, if she'd never existed, we would appear to be the American ideal of the nuclear family -- 2 parents who love each other, who've had a long and relatively uncomplicated relationship, with their 2 kids - 1 boy and 1 girl, healthy. We got exactly what we wanted but there's hell to pay. I feel as though I walked out of a Greek tragedy meant to warn against hubris and the folly of thinking you're in control of your life. And now we can spend eternity longing for Eva, wishing things had been different, willing to suffer any ruin to have her back, the presence of her identical twin amplifying everything - giving comfort and underscoring our loss in equal measure.
In this place of beginnings and endings, what we all share is the ultimate disappointment, the nuclear weapon of outrageous fortune -- that our children will not all survive us. Our babies – the best of what we offered of ourselves to the world-- are gone and we're a little diminished. I can only hope that while this sorrow is permanent, it doesn't crowd out all else. Over time, we must try to scratch out a place of peace, however tentative and uncertain.
Disappointments
I did make it to the hospital, though. The man had hernia surgery today and I made a quick visit to HRP, my heart in my throat as I did. I saw one of Eva's neonatologists, Dr. W. She was being seen at the Antenatal Testing Center and was like a fish when I saw her regarding Eva. But at least she remembered us. That's something.
I didn't get to see many people I would have liked to have seen. And today I feel more wistful for Eva than despairing. The boy told me this evening that he dreams about Eva every day and he asked me if she will grow. If only.
But hey, at least the man's surgery went well.
Tuesday, September 11, 2007
Draft for memorial
Here are the facts: After a false positive screening for neural tube defects, I was diagnosed at 18 weeks of pregnancy with monochorionic monoamniotic twins - meaning my girls shared an amniotic sac, one merciful step shy of conjoined twins. At 20 weeks, I found out that Baby B also had a heart defect -- Hypoplastic left heart syndrome, meaning her left ventricle was underdeveloped, which is fatal if left untreated. Because of the rare form of twinning we had, which could result in cord accident and death for both girls, I was kept in the hospital for monitoring of the babies after they achieved viability at 24 weeks. Once they were born, however, it looked as though Eva's heart was in far better shape than anyone anticipated in utero. She was not treated as a hypoplast and the 3-stage surgery that seemed a certainty no longer was. We received the best diagnosis possible, short of "Oops, did we say there was a heart defect? Our bad."
But there was still a defect and its effects would become more apparent over the coming days. So, we were eager for her surgery. In the days leading up to it, Eva was starting to struggle to breathe and we wanted to get past that phase and have her on the road to recovery. Onward and upward! The night before, my husband and I were with her in the NICU, there were a number of people there surrounding us, we were all so positive and happy. I was holding Eva and she was happy to be held by me, I think. We had been at the nadir for so long, that we were anticipating relief at the upswing we thought we'd be starting.
Then the next morning, day of surgery, I had a minor car accident and failed to make it to the hospital in time to walk Eva to surgery. I was calm about it because I never considered that there might not be a happy ending. She arrested on the table before any repair had been done. Everything changed. The happy calm of the staff surrounding and supporting us became the sounds and the sights of the center ceasing to hold in an outcome we never suspected. I will never understand why but with that catastrophe we began the process of losing Eva and the discovery of what a nadir really feels like.
Later, there was another arrest, another operation, blood, kidney failure, lung collapse, horrible swelling. Torture, in other words. We just didn't see it. We just believed our baby was a fighter and would make it and so we didn't do our basic job. We didn't protect her or save her or even hold her while she died. Only after.
And in what now feels like another spectacular failure of mothering, I stayed home the day before she died. I had gotten a cold and I didn't want to risk getting Eva sicker. She had a long road ahead of her (we thought) and infection was her biggest risk (we thought). So, I stayed home. Dave was there and reported back that she was finally making urine and had had her best day post-surgery. Until.
"I don't think we can get her back" were the few words that ushered in the vast hollow of life without Eva. Once we got the phone call summoning us to the hospital on that night, I felt as though I was standing between two sets of train tracks. At the moment of her death, trains passed on either side of me, overwhelming me, threatening to level everything in our life.
In her 29 days here, Eva fought like hell. Even before she was born, she revealed herself to be a tough little kid. She was the one who pushed and kicked and squirmed during all the sonograms and non stress tests. She climbed on her sister at one point, not content to keep to her side of the uterus. Once she was born, the precious few times we held her she sank into our arms, telling us that she needed us and causing us to recognize that she was more than her tiny mass. She was 4lbs 9oz at birth and never really got any bigger. She endured so much and I regret it all. We never questioned the path we committed her to until its futility became clear to us only after she succumbed to trauma after trauma. But we were just accepting what had to be done to have her home with us. We believed absolutely in her recovery, so much so that it was 3 months before the shock of her absence finally gave way to despair. I remember saying to Dave the day she died, or maybe the day after, "I miss Eva" as though she were away at camp or visiting Grandma.
We're here to try to put words to a situation in which words fail utterly, and yet I want to talk and could talk for hours. There are so few opportunities to celebrate and mourn Eva openly. At first, our friends and families surrounded us with love and support. Basking in that warmth, we initially sought out people to see and talk with. But we had no idea how quickly time would force us to close the book on Eva, at least outside our closest circle. We've become marked people, the ones with the dead child and few if any dare breach the wide perimeter of pain surrounding us, no matter how much we might want them to. Eva's absence is a tangible thing, a large piece of cold, raw and rotting meat. I can't cook it and I can't eat it. It's an albatross that is to be carried.
If you didn't know about Eva, if she'd never existed, we would appear to be the American ideal of the nuclear family -- 2 parents who love each other, who've had a long and relatively uncomplicated relationship dating back to their teens, with their 2 kids - 1 boy and 1 girl, healthy. We got exactly what we wanted but there's hell to pay. I feel as though I walked out of a Greek tragedy meant to warn against hubris and the folly of thinking you're in control of your life. And now we can spend eternity longing for Eva, wishing things had been different, willing to suffer any ruin to have her back, the presence of her identical twin amplifying everything - giving comfort and underscoring our loss in equal measure.
I wake every morning attempting to map the boundaries and terrain of grief, looking for its edges which don't seem to exist. I saw a couple in their 90s on TV recently, crying over their daughter who lived for mere hours more than 60 years ago. They haven't found the edge of grief either, apparently.
More than 6 months on, I have good days (when we're together and happy) and bad ones (when cheerfully worded medical bills arrive at home long after her, weighing now more than her),. Like an adolescent trying to make accommodations for some disappointment, I still fantasize that it was a mistake and Eva will somehow find her way back to us, but I held her dead body until it turned cold and blue. Finality it its purest form.
What we all share is the ultimate disappointment -- that our children will not all survive us. Hope in the form of our child has been crushed and the future is diminished permanently. I can only hope for now that while this piece of sorrow is permanent, it doesn't crowd out all else. Permanently, but not completely.
Wednesday, August 29, 2007
train of thought
I handed your twin to Teta, said you were not well, and left in my frayed pajamas.
I was between two train tracks, the ground started to rumble beneath me.
We drove to the hospital, that place of avalanches, running red lights and chanting
It can't end this way.
We ran to you, the place where you exited my body a horizontal burn radiating
Men compressing your chest and nurses calling out the numbers read on your blood
The tea leaves of your X-ray
Chaos as the rumble grew louder, trains coming in on either side of me
Your father paced outside of your room and I stared dumbly at the scene of your
death unfolding
I don't think we can get her back, your surgeon said.
in the moment that the trains passed me simultaneously
Pulling in opposite directions at the center, not holding.
Monday, August 27, 2007
Opening doors down the dark corridor
Tuesday, August 14, 2007
Mapping it Out
I want to create something good out of loss. I would endure any ruin to have her back, but short of that, I am desperate to have something good in her name and memory.
call all good things Eva
Wednesday, July 18, 2007
A Cancer
I want to tear my eyes out, but mainly I want to carve holes into my left arm for Eva. For the side of my body she lived in. Should I have waited to deliver? Why did she arrest on the operating table? Did someone's negligence cause her death? If they'd given her anticoagulants on April 3rd, would she be alive today?
At so many moments her course could have changed. At so many moments she clung to life by a thread. So we shouldn't have been surprised when she died. But we were.
I'm disgusted with myself for writing this pity party like a goddamn teenager.
Sunday, July 15, 2007
On Pain and Suffering
My friend sent me an email in which she claimed (in so many words) that what she's going through pales to my suffering. That statement, albeit well-meaning, is utterly futile. I can't a) know the boundaries of suffering in my own life, much less understand its possibilities in an empirical sense, b) quantify this payload of pain to any other in my own life, much less to any in the life of another human being. So how much pain am I in on a scale of 1-to-10? Go f**k yourself.
Saturday, July 14, 2007
The interminable march of days ahead
Friday, July 13, 2007
July Update
The boy also continues to amaze, but on the cognitive front. The other day, he told me he wanted to move because our garage is too messy.
Today at the park, a parent said he was taking his son to get I-C-E-C-R-E-A-M. The boy immediately responded, "Why is Willy going to get ice cream?" Our tools are quickly being diminished...
Thursday, June 28, 2007
Therapy
So this will have to do, a place where I can let it all hang out.
My sweet girl is sitting beside me as I type this, trying to sit up.
My Eva... well, she's in a malachite box on a shelf over my headboard.
I was thinking of the night of their birth, how my favorite nurse, G, asked one of the NICU nurses to take pictures of the babies so I could see them. The resulting polaroids were wholly unsatisfying, but the thought was wonderful.
I remember the NICU, the long corridor between where each of the girls were. It killed me that they couldn't even be next to each other. The NICU was such a cold place. My hands were so dry from all the washing that they burned when I used the anti-bacterial foam.
I remember the few times I got to hold Eva, how heavy she felt, how completely she sank into my arms. I knew she needed me.
Wednesday, June 27, 2007
Changes a' Comin'
In other news, she has a double ear infection.
Wednesday, June 13, 2007
A Daughter's Worth
My living girl is my consolation in Eva's loss, but as I've written, she is also a daily reminder of just how precious Eva is to us. Eva and her twin would have been more than their sum, I can't help but feel. Yet, I would hate to imply that my survivor is diminished in her twin's absence -- that her potential is impacted. Quite the contrary, she is what's left of what I think of as a vast treasure and I clutch her more tightly because of it. But surely, her trajectory has changed. I know mine has. What will become of this good kid's good kid?
Monday, June 11, 2007
A Twin's Loss
As time passes, I am filled with joy and sadness in equal measure, for the person my living daughter is becoming and for the person Eva would have been. The more I grow to love my survivor, the deeper my pain for Eva burrows into me. The ones who are here make clear what we're missing.
But what I truly dread for our future is our daughter's realization of what she has lost. Some day, we'll start the conversation with her about her identical twin. I try to imagine what it would be like to know that someone with exactly my DNA and exactly my start in life will never be known to me again. It's inconceivable. I just hope her loss doesn't define her and our hope our loss doesn't define us.
Friday, June 08, 2007
Standing on Ceremony
It seems silly now, but before we were married, the man and I dreaded the idea of a wedding. Part of it was the ridiculous wedding-industrial complex that we wished to avoid, but part of it was a real fear of bringing our very different families together. But what became apparent to me almost as soon as the day was done was that the experience of the wedding created a bond between us all. It enabled our relatives (especially the more socially conservative ones) to recognize us as a family unit. Never mind the fact that this man had been in my life for more than seven years by that point. That day made "US" real and definite to our loved ones and remains a threshold, a part of our shared history.
With Eva's service, we were able to put another distinct marker in our lives and the back cover on hers. The ceremony enabled us to honor her life and recognize and mourn its untimely end. It served many purposes, actually. For those in attendance, it provided a window into our lives and perhaps made Eva's story more real and definite to those who never had a chance to meet her. It has not given me total peace, but I think the best I can hope for is a tentative one.
Tuesday, June 05, 2007
Be Careful What You Wish For
We have what we wanted. We just never knew how painful it would be to get here. It feels like a Greek myth wherein the dumb mortals are taught a wretched, powerful lesson by the gods.
I don't know whether I should feel humbled or just beaten down.
The Itch I Can't Scratch (to Satisfaction)
So, I promised the man that I would do no baking until this weekend, for B's baby shower. It's going to be a tough few days. And how will I limit myself to just one or two things?? Perhaps, however, I should turn my energies to all the funky grains I came home with yesterday.
Wheatberry, here I come.
Thursday, May 03, 2007
Refrain
I have seventeen different thoughts every second, but some thoughts have become refrains.
Grief is a relentless predator.
My third child died three weeks before my thirty-third birthday.
There is no "survivor" without Eva.
The FACT of her suffering...
What if I'd waited to deliver?
Thursday, March 01, 2007
Invisible and Unspoken bonds
Thursday, February 08, 2007
And Islands of Sanity
Well, if I can't have a normal, healthy pregnancy, at least I can rest assured knowing that I'm doing everything I can to bring these girls to viability.
Baby B has a long, hard road ahead of her, but at least it looks as though Baby A has a good shot.
I have to be here in the hospital away from my family, but I'm getting the best possible care -- a level of care, in fact, that most people in the world in my circumstances could never imagine.
And that brings me to a a topic that I'm not even sure how to address. After many weeks here with little to do but think, I've come to realize that I am getting an extraordinary level of care. I will be in the hospital for over 10 weeks when all is said and done. The reason: to have the babies closely monitored in case the start to show signs of distress. In most places in the world, women in my situation would be sent home and told to hope for the best, if they ever got the mono-mono diagnosis in the first place. I did a little back of the envelope calculation and figure I've blown through the amount we have paid into the healthcare system in the form of insurance possibly within the first week or two of my stay here. Although hospitalization is the current standard of care in this country, I can't help but think about the inequities this leads to on a global scale. I'm in no way suggesting that the best care shouldn't be had, I'm just feeling guilty and confused about being one of the very few who can attain it.
Wednesday, February 07, 2007
A Thousand Indignities
If you've never been in the hospital yourself, be aware that hospital rooms are not havens of privacy. Anyone with any pretense of business in your room will knock and enter, enter and knock or just plain enter.
Early in my stay a flurry of entrances would habitually occur and happened to coincide with the time of most satisfying sleep 6-8 a.m. or so. The first visit usually comes from the resident or med student. "Any cramping? bleeding? leakage of fluid?" At least 3 times per day, these questions are posed. The only deviation took place one day when a med student asked, "Is anything coming out of your vagina?" [insert *pregnant* pause here] Some days, the questions are even accompanied by a physical exam, featuring frozen sardines in the role of fingers.
These visits are followed by the delivery of breakfast, clean linens, fresh water, morning meds, etc. etc. Strangers in your room while you're sleeping? Yeah, at least initially, these visits were highly jarring.
One kindly resident once asked me how I was adjusting to my stay here. I told her I felt like a project that was being managed in pieces by many people, but that no one was assigned the role of project manager. I certainly didn't feel like the manager.
Tuesday, January 30, 2007
A long time coming
I am pregnant.
With twins.
Who are monoamniotic.
One of whom has Hypoplastic Left Heart Syndrome.
And I've been in the hospital for nearly 6 weeks so that the twins can be monitored closely. I'll be here until the twins are delivered, which will hopefully be on February 28th.
Pheww. I'm plumb tuckered out. See ya next year!
Monday, July 03, 2006
Monday, June 26, 2006
Dela-won't
It is, perhaps, much like the state of Delaware itself. No matter -- my main point is this. Delaware is an anti-democratic leech on the side of its neighbors and anyone so unfortunate as to pass through its boundaries.
You see, I never go TO Delaware, only through it. I don't even go all the way through it, really. I just graze about 11 miles off the top (on my way to places I prefer), and yet it manages to cost me at least as many dollars and at twice as many minutes. And, this just doesn't seem fair. So, they have no sales tax, and they have no income tax, and every other corporation is incorporated there, so what? Is the purpose of this largess to its own residents (at the expense of anyone just looking to get the heck out of there) a sign of some inferiority complex? Some overcompensation, maybe? I am so stinkin happy for the Delaworons who -- like parasites -- get to suck the blood of interlopers for the benefit of their state coffers.
I need to find a detour! Pennsyltucky, here I come.
Thursday, June 22, 2006
Results Not Typical
-Low fat dieting
-Low carb dieting
-Pills, Speed
-Laxatives/colonics
-Surgery, gastric
-Surgery, plastic
-Exercise
-Starvation
-Purging
It is in consideration of these options (most of which seem, frankly, vulgar) that I happen upon advertisements for various weight loss schemes. They invariably feature a women transformed from doughy to divinely formed. The only problem is in the (again, invariable) fine print... "Results not typical." In fact, the fine print on one advertisement I read indicated that the woman pictured actually lost her weight before going on the plan advertised! What then, I wonder, is typical?
Unfortunately, I know the answer. Typical is "fries with that" obesity.
Saturday, June 10, 2006
Take That
I got a new job, incorporating my love of photography with my boring career in IT. Take that, Gartner!
I have started helping my friend Sheila address the invitations for her wedding. That that, invitees!