If I Should Die

Or rather if my husband and I should die, what will happen to them?











That has been on my mind lately.

All the life insurance in the world can’t buy new parents.

Am I the only one struggling to come up with a plan in the event the worst happens?

Open Season

My childhood was filled with killing. There was no real season for it. The guns stayed in the truck window hanging on the rack all year long. Depending on the time of year, the dead deer were either strung up proudly in a tree at the end of our driveway, or hung secretly down in the dirt cellar. We butchered them on the kitchen table. Bones sawed and cracked through rang in my ears. The blood got on everything, and it smelled...sweet and heavy on the edge of decay.

And it wasn’t just deer. There were bloody headless chickens who ran even after they were doomed. There were turkeys soaked in pails of stinking brine whose feathers needed to be plucked out. Pluck, pluck, pluck... the perfect word for how it sounds and feels to pull a feather from a soaking wet bird carcass. There was the rabbit I saw getting skinned. My young eyes were fascinated by how his coat peeled from his body, leaving a thin layer of film to hold in his red, purple, and grey guts. “Looks like a peanut butter and jelly sandwich,” My grown step brother said staring down at his catch. The next time I opened my lunch to find the white bread faintly seeping up with grape jelly trails, I knew he was right.

And it wasn’t just things we ate. There were troublesome dogs, unwanted litters of kittens, and foxes who did not belong in our coop. There were floating bull fish after the quarter stick went ka-boom in the pond. There were unrecognizable piles of skin and bones littered throughout our woods. The deer skulls were obvious... the others I wondered about.

And it wasn’t just animals. There were two little girls who came to believe Him when he said he would tie cement blocks around their necks and throw them in the pond. Those girls grew up and got away. But I know if you go back and look into that dark and murky water you will see reflections of them lying there at the bottom.

I See Evil People

It’s an epidemic. Everywhere I look on Facebook, I see evil people...

Just last week I found out that the Waltons (of Walmart) are evil. I did not know that they enslaved poor people everywhere, and are the reason poor people stay poor. I had no idea that they force people to work and shop at Walmart, thereby condemning them to a life of poverty. They make people wear cheap clothes (made in China) and they make people eat unhealthy foods (made in ?). Walmart stole more from us than the combined wealth (can you call it that when people are poor?) of the lowest 40% of our country. Those bastards.

 And then there are those evil fast food CEOs who are lining their pockets by blocking people's arteries. Thankfully New York’s Mayor Bloomberg is taking on those demons... if we are lucky he will protect NYC from 20 ounce sodas. But who will save us from Chick-fil-A? Those bigoted hatemongers, with values and beliefs that we do not agree with, use their profits (that they steal from us by force) against us. Thank God (um I mean thank nothing) that there are local politicians in Chicago, Boston, New York, and San Francisco who will block the expansion of evil businesses into their cities... because you know, I heard that if you buy a chicken sandwich from a hatemonger that makes you one too (unless of course you balance it out by picking up some Starbuck’s afterward).

Damn, it seems like no shopping trip is safe anymore. Drop a dime in the wrong place and I just might be keeping my friends from getting married or I may be helping to hold down the poor. This kind of stress might drive a girl to drink (hopefully not imported Vodka) or even to...

Bring on the smokes! Go Big Tobacco! 20oz sodas, clothes made in China, and greasy chicken sandwiches ain’t got nothin’ on you. Thankfully your CEOs know enough to shut up and pay up. Thankfully our politicians know enough to line their coffers (our coffins?) with people’s addictions... to the tune of more than $24.3 billion in gross cigarette excise tax revenues in FY2009 alone. Thankfully we all benefit from the death-colored revenues generated by Big Tobacco.

So skip the chips at Walmart, skip Chick-fil-A, skip Mac D’s and give your kid a smoke instead. You will be doing us all a solid.

The Day I Dreaded

When the phone rang at 11:07 a.m. and the caller ID flashed “Private” on the screen, I was not surprised to hear the pediatrician’s voice saying hello. I had just been on the phone with her office to ask for vaccination info for camp forms. So although a call directly from the doctor herself was not necessary, it was not alarming.

“Hi there,” she said softly, “I need to talk to you about Masha’s lab results.”

Instantly I felt sick to my stomach and braced myself to hear her say that the CBC was bad and Masha has Leukemia.

“Remember I ordered an HIV screen because she is adopted? It came back positive.”

She continued on... explaining antibodies tests and actual virus tests... Masha’s blood had failed the virus test even though the antibody test came back negative. Could I take her into the hospital for further testing... here is the phone number... they have her records and they are waiting for her. My composure stayed steady on the phone as my brain repeated over and over, “It’s not a death sentence anymore, it’s not a death sentence anymore, it’s not a death sentence anymore.”

As an eighties girl, I was wide awake when AIDS made its public debut. Within a couple years the disease traveled from the drug and homosexual male communities into dentists’ offices and blood transfusions. We were all appropriately terrified of the mysterious disease that had no cure and eventually ended in death. Those who had AIDS or its precursor HIV became pariahs.

Before we hung up, our pediatrician gave me one small drop of hope in the words, false positive. Maybe, just maybe, this was all a big mistake. I pushed the call disconnect button and burst into tears.

It is doubtful my husband understood much of what I sobbed into his ear but the HIV part got through to him and he was home with me within a half hour. Together we cried and wondered how on earth this could be possible. She came from a wealthy family who had other children before and after her, so it is doubtful it was transferred to her perinatally. She had never been in surgery so a transfusion was unlikely. What other possibility was there... bad vaccination practices at the orphanage?

Jumbled. That is how the thoughts come in times like this. I remembered a bad bite on Masha’s back last year... the dental indentations had looked suspiciously like Kimani’s mouthful of teeth and now I worried if HIV could be transmitted through a human bite. Maybe it wasn’t Kimani who bit her... maybe I would have to tell the school and they would tell the other parents... and as if Down syndrome were not enough to get in the way of her up-and-coming social life, surely HIV would be. Who in their right mind invites Typhoid Mary to their kid’s birthday party? Kimani had meningitis, Masha has HIV, and what’s on the agenda for Autumn... Leukemia? WTF? This is why I avoided getting their labs done... this is the day I dreaded. The enemy I can’t see is the one who has had the most power to destroy my babies.

My best friend was at my house in a matter of moments after my call to her. She would babysit for us so that when Masha came home from school, her father and I could whisk her off to the hospital to meet with the infectious disease specialist. Putting her in her carseat I started crying all over again... she just seems so strong and healthy... She asked me if I was hurt and she leaned in to kiss me. It is ok to kiss her I reminded myself... HIV is not a booger disease and a little bit of runny nose or wet lips was not going to make me get it. Oh my god, I don’t want to be afraid to love on my daughter.

 

The little old lady “bug” doctor, the same one who hovered over Kimani in PICU trying to pinpoint the force that was sickening her week after week, walked into the room and said, “Well hello. I know you but who is this little one?” Introductions and explanations were made and then she reviewed Masha’s translated medical record. There it was. Anemia. The doctor explained that in some countries blood transfusions are given to anemic children.

The needle jumped up a notch... this whole time bits and pieces of information pushed the line of fear up or down on the graph in my heart. The doctor explained all of the tests given for HIV, and that there are two different strains and that Masha had actually not yet been tested for the virus itself (the needle dropped down a notch). In fact they would be drawing blood to do that test right after our meeting. The results would take a week and she herself would call us to deliver them. She took my hands in her cool, bumpy grandmotherish hands and looked me in the eyes. “Deep in my heart I think this could be a false-positive but if it is not, you must remember that it is not the end of the world for her. This is a chronic disease and we can treat it.” I felt my cheek muscle tense up and wiggle but I did not cry. I held on to those two words that might possibly erase this whole thing... false positive.

For the next couple of days I couldn’t help but remember how I'd had a similar bit of hope while pregnant with Kimani. They didn’t know for sure if she had Down syndrome, and I had held fast to the word “maybe.” And then there was the hope that the meningitis had not caused brain damage...

On Friday, Dr. L. called with the good news that Masha is fine. Her specialized blood test for the Human Immunodeficiency virus was negative. This chapter has a happy ending.

This Is About Execution, Baby

New business ventures succeed only if they have a strong business plan. You must find or create a need for your product. And then you must latch on to that need and promulgate it over and over until it becomes a necessity... stitch it into the fabric of your culture... make it the gold standard.

And that is exactly what the companies Sequenom and Verinata are doing with their prenatal blood tests that can indicate whether or not a fetus has Down syndrome. They are capitalizing on old fears, outdated ideas and stereotypes, and the need for a perfect child to the tune of an estimated 2 billion dollars a year.

Today www.xconomy.com published an article, written by Luke Timmerman, touting Verinata’s release of their version of the MaterniT21 blood test developed by Sequenom,

"The promise of this eventual capability has been in play for more than 20 years. Now when it’s finally here, there’s a wonder and awe in the community,” says Caren Mason, Verinata’s CEO.

Awe and wonder... I don’t think that is what I feel. Pissed off is what I feel. If you have time, go read the article. It provides the most straight-forward admission of what this push for prenatal testing is about, money. I am not against prenatal testing but I am against pressure to get prenatal testing and/or to terminate based on the results of testing.

The company has hired genetic counselors to help doctors with communicating results to patients, and has people working on economic impact, which it hopes will persuade insurers to cover the cost of the test over time, Mason says.

Ms. Mason, it strikes me that there is a strong conflict of interest in your statements. The only way you convince insurance companies that covering the cost of your test is economically sound is to ensure them that the results of such testing will lead to the terminations of “medically expensive” children. So, to make your test worth it’s cost, your genetic counselors need to help doctors communicate to pregnant women that they should abort their babies with Ds.

It is beyond unethical for these companies to hire people to “help” doctors communicate with their patients. That kind of manipulation for financial gain should be illegal. I am pro-choice but to me that means a completely informed choice not a “choice” pressured by a doctor pressured by a genetic counselor hired by a company making billions off the whole scheme.

Don’t go running to invest your money quite yet as Timmerman goes on to write,

There are a million things that could sink the endeavor, whether it’s competition, litigation, insurance resistance, or physician skepticism. There’s even potential for political and moral debates to sidetrack the company, as people argue over whether it’s ethical to use this kind of information to potentially abort a fetus.

While it might be ethical to use information about your fetus to decide if you want to continue the pregnancy, it is not ethical to insinuate that people with Down syndrome are too expensive to allow them their lives.

What else is not ethical? The constant articles dredging up (in a positive way, you know, with the intent of putting them to rest) old statistics, stereotypes, labels, and fears that serve to reiterate a negativity around Down syndrome.

And what I view as most unethical is a doctor or diagnostics professional not sharing the readily available information that gives a woman the freedom to research and educate herself about the baby she is carrying and what its life might be like.

Sadly, Mason does not seem to let ethics get in the way of money making,

She sounds deeply determined to get this one right. “This is about execution, execution, execution,” she says.

Yeah, Mason you got that right.

So here is my question readers, should companies like Verinata and Sequenom be required to share the results of their "economic impact" studies and the genetic counselors' coaching plans that will be used to "help doctors communicate with patients" with the general public?

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In case you don't have time to read the article, here is my "favorite" comment on it so far. I wonder exactly what "it" is that he wants people to think about.

I reckon the biotech segment is pretty hot right now. Why is this guy not writing the article about Sequenom? Really…..Think about it………….$$$$$

Fear Me

I am the one who wanted you.

I am the one who dreamt of you in secret.

I am the one who made sweet love in the hope that you would be the result.

I am the one who knew you first.

I am the one who announced you with delight.

I am the one who nourished you deep within my body.



I am the one who feels filled with strange.

I am the one who considers you, and finds you wanting.

I am the one who hides my shame behind false words.

I am the one whose heart you are breaking.

I am the one who will sentence you to death.

--------------------------------------------

Imagine that? It could have turned out that way. It was my choice.

Before... and After

Before the actions of hate struck fear and then sorrow into our hearts, only one of our combined eight children (who range in age from 24 years to 22 months old and have all been to NYC) ever saw the Twin Towers in real life.



When TK was in second grade, my husband took her into NYC for a day of fun and adventure. A few months later, she started third grade and life as we knew it changed forever.

She doesn’t remember the trip, nor does she remember how our day played out on 9/11. At that time my husband and I had not yet even begun the talks about creating her younger siblings and her older half siblings lived far away and only came to visit NYC after 9/11.

This morning I made our children who live at home watch some of the 9/11 anniversary specials on t.v. They fussed, bored and antsy to get back to their cartoons and computers. They could not feel my sickened stomach as my memories flooded back. They could not feel my sadness as the victims’ family members shared their stories. For them, 9/11 is a page of a history book, as Pearl Harbor once was in my mind.

For me 9/11 made all historical accounts of war and tragedy real, tangible, things I can now truly envision and feel when I read about them or visit sites like Babi Yar. But for my children, before and after 9/11 is all the same to them, and a part of me hopes nothing ever changes that.

Get Outta the Trunk

Have you been following the Casey Anthony trial? Even if you weren’t interested, it was hard to miss. But I was interested. I was fascinated. I was right there in the trunk every night following it on Fox News.

It is difficult to believe that small missteps in the investigation allowed what seems like a murder to become a possible accident... reasonable doubt. One of the nights during the trial, there was a forensic consultant on t.v. saying that the prosecution should have tested the flies and maggots in the trunk of Casey's car to see if they had been feeding on little Caylee's dead body. Her DNA would show up in their teensy bug bellies if that were the case.

There were flies and maggots in the trunk of Casey’s car? Hellooooo, I have three year old french fries in the back of my van, along with an assortment of other “leftovers”, but no flies or maggots. I suppose bugs don’t prove a cause of death but they sure do signal that something grosser than a trip to MacDonald's went down.

At the very least the girl is guilty of more than just lying. And everybody knows it. And everybody also knows that she is not only getting away with it, but she is going to profit from it big time. She wouldn’t even dare take the oath and speak on behalf of her drowning story, and yet her lawyer has already hired a hot shot NY agent to help set up the most lucrative talk show deals. Who knows, maybe there will be a book or a movie forthcoming. Then she’ll be all set for the bella vita.

Or maybe not... maybe we could all get out of the trunk of Casey’s car. We could stop ourselves from acting like the maggots who gorged themselves on that rotting baby. We could boycott any shows Casey appears on. We could refuse to purchase any magazines that print her paid story. We could use our collective purchasing power to stop Casey from getting rich off her daughter’s tragic death.

D.O.A.

When I was 15 years old, I killed myself. One could say it was accidental but then one might be lying. Looking back, it must have been a very upsetting and even humiliating experience for my mother. Sorry mom.

Why did I do it? Oh, what a complicated question to which there is no simple answer.

The door was open. It has always been open for as long as I can remember. And one day, I just stepped through it.

I have been asked what I saw on the other side and the answer is nothing. Perhaps an overdose of drugs and alcohol blots out the shining light...

I saw nothing, but I learned something... Death answers to God.

(God was kind enough to remind me of this yesterday at our staff picnic. A friend mentioned that he had once died... and suddenly I recalled a day long ago, a day I had almost forgotten, a day that taught me that God calls the shots, not me.)

The Open Door

I feel this poem...

Death Barged In
by Kathleen Sheeder Bonanno

In his Russian greatcoat
slamming open the door
with an unpardonable bang,
and he has been here ever since.

He changes everything,
rearranges the furniture,
his hand hovers
by the phone;
he will answer now, he says;
he will be the answer.

Tonight he sits down to dinner
at the head of the table
as we eat, mute;
later, he climbs into bed
between us.

Even as I sit here,
he stands behind me
clamping two
colossal hands on my shoulders
and bends down
and whispers to my neck,
From now on,
you write about me.

(From Slamming Open the Door by Kathleen Sheedar Bonanno. Copyright © 2009 by Kathleen Sheedar Bonanno. Used without the permission of Alice James Books and so I hope you go buy a copy so they don’t send me to prison. All rights reserved.)

She knows what I know, only she knows it better than I.

Death opened the door and I cannot get it to close all the way.

It doesn’t seem to matter that Kimani is a healthy 25 lbs. of sheer power and joy. It doesn’t matter that she has 21 signs and says things, and can almost walk. It doesn’t matter that when she eats peaches or berries or watermelon that the sweet juice bursts forth and trickles down her chin. Even her wild laughter cannot bolt the lock.

I can see him, I see the shadow he casts from that thin crack of space where the door is still slightly ajar.

“Go away,” I yell at him pushing hard against the smooth cold wood. My efforts are futile and he is nonplussed, still tossing golden coins in the air.

The Worst Kind of Mistake

“A Florida OB-GYN who was supposed to abort a fetus with Down syndrome in a twin pregnancy but leave the normal one alone made the worst kind of mistake.”

I’ll bet you can guess what the oopsie was.

I must be really jaded about this issue because I snorted a half laugh and half humph after reading the article in the Miami Herald. I couldn’t help it. The sick irony of the whole situation sent me over the edge.

This couple wanted a child bad enough to hop through the in-vitro hoop, and they got twins out of it, a boy and a girl... two for the price of one. But, oh no, one was “not normal.” One had Down syndrome and was therefore scheduled to die.

But then uh oh, Mr. OB-GYN accidentally injected the wrong baby... and when you kill the wrong baby there is hell to pay. You can lose your license to practice medicine over such a mishap. The doctor felt really bad about it (not sure if “it” was losing his license or killing the wrong baby.) He said he was going to kill himself over it and ended up involuntarily hospitalized. (You can kill babies but not yourself, I guess.)

And what did the mom and dad learn from this mistake? If at first you don’t succeed, try try again. A week later they had the little guy with Ds injected and ended the whole nasty affair.

I feel sad that when it is all said and done, the worst kind of mistake means something entirely different to me than how it was written in the article. And I feel sorry for that couple, sorry for them in ways I can’t even explain.

Stone Me

A while ago I went with my aunt to see The Stoning of Soraya M. It was a hard movie to watch.

Soraya’s husband no longer wants to be married to her so he arranges for her to be accused and found guilty of adultery. According to Sharia law, she must be stoned for this. Her own father and her two young sons participate in the stoning (along with her husband and most every other male in the town).



I wanted to close my eyes, to turn away as the rocks flew into her face. But I denied myself that out because I knew it was a true story, and because she could not turn away, I would honor her by watching what she went through.

I felt so connected to her. I live in the same time period as she did. I have a husband and two young sons. I have committed sins much more worthy of a stoning.

I, too, have been condemned to die for my sins.



But as I await the fulfillment of my sentence, I hear Christ’s words, “If any one of you is without sin, let him be the first to throw a stone at her.” John 8:7

Though no one steps forward, the weight of my own sins still holds me down in that hole like the convicted prisoner that I am. I realize that I am alive today simply because I was born in the USA instead of Iran.

Picture credit: I doctored the dvd box art. You can click it to see the original.
'TUC in the Ground' by Artist Anaa.

A Cold Hard Place

August 2008
One day my unborn child, who had already enchanted me, was handed down a sentence, unearned and unjustified, and it became my passport to the molten center of my life’s core. In the beginning the adrenaline fueled by my fear protected me. After that, I cried and I cried until I was empty and speechless, and then I slowly learned a new language... one that gave me hope of a way out, one that reminded me that there may not be one.

And now I wait. I watch my baby’s body war with itself. I feed off the brief glimpses of normalcy... a coo, a cry of hunger, a dirty diaper. I stare into eyes that do not know what I know, that do not fear what I fear. I wonder if the coin tossed high will land on my call, and if I will still be able to gaze into these eyes tomorrow. I am afraid to leave her, afraid to go home, afraid that she will die while I shower, or kiss a different child goodnight.

I pray, (and perhaps I bargain and make undeliverable promises). I walk alone into the temple with my paltry sacrifice, and I go one on one with God. I am terrified that He will ask for this child, and that I will not be able to answer.

Specialists, with stacks of medical degrees, confer at her bedside. They can not give me the answer. They can not write the end of this story for me. These chapters that hang between living and dying are fraught with needles and drugs, wires and tubes... the life support tools of the trade. Fancy machines monitor her score with numbers blinking red and ever changing. Alarm bells ring for more troops and battalions charge in to rescue her in these moments.

I am so tired in my head. I feel like we have been marching for days on end with no food or sleep. I feel as though I might drop her before we reach our destination, and that if I do, this will all be over, and her death will go on forever.

So I sit, awake in the cold hard space between life and death, watching her, waiting on her. I touch her soft warm skin, bruised and torn. I lean in close and sniff her baby scent. Heaven’s perfume still lingers on her. I swallow down everything that is outside of this breath of her. I push it into the tight ball that has taken over my stomach. I cannot let anything distract me from memorizing this instance of her... because I’ll need it someday, no matter how this story ends, I know I’ll need it.

(I read this post and it took me back in time to a place I’ll never forget. She does a much more eloquent job of explaining it, that cold hard place where a parent goes to wait for the answer.)

I’m Not Special

It wasn’t a religious thing, nor was it a moral thing. And, I am not special.

I didn’t want a baby with Down syndrome. Really, I didn’t. But more than that, I didn’t want to face an abortion.

She was a wanted baby. We made her on purpose. We were thrilled and excited to be pregnant again. It is not like this was some college accident.

I am lucky... I can get pregnant at the drop of a... well, you know how it works. We could have very easily done a do-over. Two, three months later I would have been pregnant again. Most likely it would have been a perfectly typical baby.

But to get there, I would have had to choose death for the zygote, fetus, baby that was already on the way. I, me personally, would have had to say definitively that this person should not live. Then I would have had to get up on the table to prove it.

I just couldn’t do it to her.

And everyday, as I bask in the light that shines mysteriously around her, I am so thankful that her story didn’t end that way.

Photo credit: Artist Anaa

The Blessing of Tragedy

I have a confession to make.

There is a good chance that I would have been disappointed for a very long time with my baby girl if not for the tragedy of the sixteen weeks I spent aching to know if she would live.

Before her, I had given birth to two "perfect" boys. Two boys who grew and developed on or ahead of schedule. Two boys whose every moments of life were celebrations of the miracles of babyhood. Every milestone they reached reinforced my feelings that I had created two of the most talented and brilliant people ever to be born. I was so blessed I thought.

Then came along a baby girl with Down syndrome and the world as I understood it came to a crashing halt. Who will ever love this person I asked myself silently and my husband aloud. What will become of her?

I could not see the future for my eyes were clouded by the confusion and sorrow in my heart.

Hours after her birth they whisked her away to the NICU bootcamp and for the next three weeks getting her to eat enough to come home became my number one priority. She could not cooperate... a faulty baby who could not latch on, who gagged on the bottle or fell asleep after three swallows. She can’t even eat my brain screamed at me on and off all day, each day. What will become of her? My heart sank deeper into a despair fueled by fear, anger, and shame.

And then the Lord God reached down and slapped me so hard my head spun.

Congestive heart failure. An echocardiogram revealed a life-threatening condition called a coarctation of the aorta. Oh, I had known, been told while she was still in utero, that she had a broken heart... a complete AV Canal defect that would require open heart surgery at around six months old but this new development meant an immediate surgery. Her aorta would be cut apart, the narrow section removed, and then the open ends would be sewn back together. Forget bypass, instead her whole body would be deep cooled and completely shut off, a controlled thirty minutes of death.

I stopped worrying that she would not go to college or get married and started worrying that she would not live to ever sleep in her own crib.

She was transferred to a major hospital where there was a surgeon capable of making the repair. Within days of her arrival she contracted a bacterial infection that ripped through her kidneys, blood system, and brain.

Still though, like an ancient pharaoh, there was a part of my heart that was hardened to the idea of Down syndrome. A very soft ugly whisper in my mind asked, would it be better for her to die? After all, what will become of her?

I’m guessing by that point God was pretty disgusted with me. He took my hand and walked me through a sorrow-filled hell on Earth. He showed me dying babies. He showed me parents who were hurting perhaps worse than I was. He showed me many things that are harder to accept than Down syndrome.

As she lay in the hospital, my boys turned two and five. Life went on without me. Summer gave way to Fall and the wild things outside prepared for their long sleep. Death outside, death inside. Death wormed its way into my heart. I thought about how there is just one second between the hope for tomorrow and the finality of death today. That second stayed with me for weeks. It changed me. Forever.

As I write this, the floor above me is bang bang banging as she jumps like mad in her Jumperoo. I hear her squeals of delight. The question, “What will become of her?” now holds the promise of wonderful things. She is alive, do you hear me? Alive!

And that is the greatest blessing of all.

Warriors

We were drafted. My only way out would have been to take her as the first casualty. Before I played this game of Risk, I knew I wouldn’t deploy that sniper. So now, here I am, far from the battlefield still dreaming of little shattered bodies.

This time last year I was living in a NICU chair, angry and sad, but still unaware of the real battles that lay ahead. I didn’t know yet that my baby and I had entered a war. I didn’t know that her aorta was too narrow and wreaking havoc on her heart and lungs. I didn’t know that a teensy bacteria could find its way into her brain and eat away at it. I didn’t yet understand that death really does come for babies.

Sarah, Rita, Jasanna, Miracle, Jayshawn, Bella, Savanna, Ryan, Kimani, Ashlyn... our battalion... some died, some made it out, some are forever wounded, some are still enlisted. I wonder if their moms feel like I do. I wonder if their dads play Guild Wars and kill fantasy creatures in dark livingrooms.



I wonder if I can ever get the shrapnel out from under my skin.

(Thanks go to my dear husband for providing the screen shot of his Guild Wars character (named after me, awww) standing over her latest trophy.)

I Don’t Need Your Ruby Slippers

It has been a rough couple of weeks thanks to the shooting death of Dr. George Tiller. By now you have probably heard of him... provider of the late term abortion. The blog-o-sphere has been burning with his name and the stories of his clients who traveled to Kansas to give what only he would take.

As many of you know, I am pro-choice. And, even if I did have a momentary lapse after looking at pictures of first trimester abortions, I have recovered. Because being pro-choice doesn’t mean that I have to think your choice (or mine) is good or even appropriate.

But if you are going to do it, be honest with yourself at least. Aborting a pregnancy, terminating a pregnancy, pregnancy interruption, losing a baby, letting it go, saving your baby from a “lifetime of suffering”... it all equals the same thing... choosing to end your baby’s life. That is a death sentence.

And I would do it.

You read that right. I know what it is like to be sitting in a doctor’s office with a belly full of broken baby. The difference was that, in my mind, my imperfect baby did not merit a place on Gordo’s broken baby list. He writes,

“If anything, late-term abortions should be less offensive, since they’re so often performed in order to save a woman from having to carry a fetus to term who has one of the following horrific conditions”

He put T21 on his “save me from this horror” list. He put my sweet baby on the hit list. When I let him know that Down syndrome is not a “horrific condition” and not worth a death sentence, he told me I must be lying about being pro-choice.

I am not lying. There are conditions on his list that I might not accept for my child. No, not the ones that are incompatible with life, like T18 or Potter’s syndrome... the other ones... the ones that are compatible... but are so very hard to live with. The truth is that I don’t know what I would do. And I will venture to suggest that you don’t either. Unless you are one of the few amazing parents out there who now know for sure, you just can’t sit back on your couch and speculate that you would choose life for any baby under any circumstance.

And why might I choose to terminate my baby? Because I am scared, selfish, ashamed, guilty, horrified... Because I have convinced myself that “letting it go” is “saving it from a life of suffering.” (Mainly my own suffering, but don’t tell me that.)

Or because I believe there are circumstances where people are better off dead.

Or because I read too much crap on the internet.

So let me say it again here on the internet, Down syndrome does not merit a death sentence. Doctors who deliver doom and gloom with a Trisomy 21 diagnosis do a terrible disservice to parents who are going through a very hard and very susceptible time.

Is my T21 girl a slow learner? Yes. At ten months old, it took her at least twenty readings of a certain book before she caught on to the game “How big is baby?” and she only throws one arm up into the air while squealing with laughter. I appreciate those who would take me to Kansas to spare me this horror, but thanks anyway, I can live with it.

We're Not In Kansas Anymore, Toto

I recently wrote a post, Not Like This where I explored my feelings about how hard it would be to have your baby die in a very busy, very public situation, like a NICU. What I didn’t tell you is that my husband and I had to go through the mental exercise of making decisions about a Do Not Resuscitate order and removing our child from life support. We had been counseled that it was better to know what you would want to do prior to a situation arising, than to be forced to make huge decisions in a highly-charged emotional state of mind (uh, yeah, like I wasn’t already in that state of mind...)

Take a minute to try to imagine your child being kept alive by a ventilator... his brain’s neurons no longer firing or his heart beyond repair.

It wasn’t hard for me to conjure up. Not even two weeks earlier the mother of a five month old baby girl who had aspirated on spit up during a nap, brought me in to “meet” her child... a baby who was alive now only because of a machine that pushed air in and out of her lungs. There was no need for the t-bone clip to keep the vent in place because this baby wouldn’t fight the tube... this baby would never fight anything again. She looked like she was sound asleep. If only.

Standing there, I remembered with guilty intimacy the guttural cries that had come from this young woman just days earlier when the neurologist broke the news to her that her baby was brain-dead. “No,” she had wailed, “noooo, noooo, noooo” Over and over and over again the protest rose from deep within her, and it had sunk and curdled inside of me. It happened on a Friday night around 9 p.m. My own sick baby was asleep in her PICU crib. I heard that sound, that mother’s anguish, and I had to leave. I went home. I could go home, but I could never abdicate my involuntary and unfortunate role of witness.

My husband and I pretended to make up our minds about various scenarios. I won’t drag you to tears with all the details. I’ll share just one. I would be the one to do it, to take the vent out. Because I couldn't live with the memory of someone else doing it.

So what’s the difference between Dr. Tiller, the respiratory therapist that extubated that five month old and ended her life, and me? If the situation is one where the baby will, without a doubt, not be viable after birth (off the mommy-vent), then is it so wrong for the parents to want a private death?

Prayer #2847

Through the years I have often wondered about prayer... what to pray for, and if it really matters. My prayers started off fairly simple in the early days, "Lord, if you take away this hangover, I promise to never drink Mai Tai cocktails again." Eventually I stopped being so self-centered, "Lord, please keep Cute Boyfriend safe on his motorcycle."

Time wore on and I began to pray more consistently for things I deemed important... someone’s health, marriage, salvation, or the outcome of a court battle. I wondered if those prayers made any difference. It was hard for me to have faith when the conversations seemed so one-sided. Even when things turned out the way I wanted, I still wondered, "Was it always meant to be this way or did my prayers influence the outcome?"

When I found out that the baby I was carrying had a massive heart defect, and that it might be an indication of Down syndrome, I wanted to pray the right prayers but had no clue what they were. Should I pray for a miracle... that the baby’s heart would be fixed in utero and that there would only be 46 chromosomes? Why not.

He answered "No" on both counts.

I prayed that she would eat, that she would heal, that she could go home... "No, no, no," He said. Everyone else prayed too; family, friends, church acquaintances, strangers... hundreds of people, all praying a prayer that, summed up, sounded like, "Let her live."

But after weeks and weeks, it was looking like we were going to get the ultimate "No". And this got me to wondering about my relationship with God. Isn’t He my best friend? Doesn’t He love me? Doesn’t He want only good for me? Let me tell you, if I had any other friend who had the power to save my daughter’s life with one breath of their attention, and they chose not to, well we wouldn’t be best friends anymore.

Did those prayers matter at all? Was she destined to die on some predetermined schedule?



When king Hezekiah was deathly ill, Isaiah told him that the Lord said he would not get better, that he would die. When Hezekiah heard this, he turned his face to the wall and prayed to the Lord, "Remember, O Lord, how I have always tried to be faithful to you and do what is pleasing in your sight." Then he broke down and wept bitterly. God tells Isaiah to go back to Hezekiah and say to him, "I have heard your prayer and seen your tears. I will heal you... I will add fifteen years to your life..." 2KI 20:2-6

Well, Hezekiah’s prayer made a heck of a huge difference, now didn’t it. Hence, I kept on praying for her life. Somewhere around prayer #2847 on her behalf, I realized that I was missing something. You see, I was still mad at God for not performing the miracles He could have. And all those "nos" were starting to make me question my faith altogether. What would it mean for me and God if He let her die? Could I still trust Him, love Him, believe in Him?

Thus, prayer #2847, "God help me to accept your decision concerning my baby. Help me to forgive you if you take my daughter back. Help me to not let my broken heart stand in the way of our relationship. Help me to let go and let you, even though I can’t understand why."

"Yes," He said, "I’ll give you that." And, finally, I felt peace inside.

Not Like This

On occasion I have given thought to how I might want to die. The results of such mind exercises are always the same; an unexpected bullet to the back of head or I fall asleep one night and don’t wake up. I don’t end up in the hospital in either scenario, nor do I have a chance for goodbyes.

It is one thing to imagine from the bleachers, beer and hotdog in hand, how you will be "out" but quite another thing to actually be the player in the game who is facing another strike. It is even worse when it is your child going up against the pitcher, instead of you.

During the early days in the hospital, I did not genuinely feel that my child could die. Yes, she had a major heart defect, but there was a plan for this in place. When her second, more menacing heart defect was detected, I felt the pressure of possibility weighing down on me.

Within days of that discovery, my baby became very sick, the kind of sick that made her whole body seize. I could hardly stand to leave her, but there was nowhere to rest my head in that place. So I would sob in the car all the way home, wondering if she would be ok.

But I hadn’t yet felt the reality that she might die. Oh, I was scared of it but deep inside I still had that nebulous sense of that not being something in my world. Like it just wasn’t part of my brain’s schema.



The call came around midnight. The caller id flashed straight into my heart... the NICU. Just the ringing was making me shake. We were afraid to pick it up. When I did, the very first thing the doctor said (blurted out) was that my baby was ok. They wanted to do a lumbar puncture and needed me to come down and give written permission for the procedure.

For the first time, but not the last, I wondered how they tell you that your baby has died.

A week or so later, my baby girl stopped breathing in my arms and the reality of it sank in. Suddenly there was a whole new category of thoughts in my brain. The tentacles of horror crept up my legs and arms, and twisted around me, squeezing me tight.

I am an emotionally secluded person. Because of this, my husband and I were married in a secret ceremony ten months before our white wedding. For me, promising the rest of my life to my love needed the privacy that such an intimate moment deserves. My child’s return to God would require that same sort of privacy.

You won’t get that in a NICU or PICU. Every time my daughter’s body would begin to fail, a swarm of doctors, nurses, and respiratory therapists would come and "work" on her. I would stand out of their way and pray, "Not like this, Lord, please not like this." I wanted them to save her so badly I could taste the coppery ache for it in my mouth.

Because if she had to die, I wanted it to be our little secret. I did not want any other person to share it. I wanted to be alone with her... holding her, kissing her, and whispering love in her ear.