Wednesday, February 8, 2012

what we do to others, we do to ourselves


Hello, my name is Tara Schleifer and I oppose Senate Bill 636. I am a married stay-at-home mother to my son Isaac who is here with me today.
I was the one who said NEVER. I will never abort this baby for any reason. I love my husband, we have resources. I was a primary caregiver for my lifelong-disabled mother and she recently passed away in our home as I held her hand whispering all the names of people who loved her. There is nothing that could ever happen to change my mind, Obviously, I can take on whatever happens. Don’t we all feel that way about life’s challenges? I came to learn sometimes life breaks you.
My husband and I have struggled to build our family for 12 years. Last February we were shocked to find out we were pregnant with no medical assistance. At 17 weeks, jubilation quickly gave way to feeling like I had been set on fire.
Our baby was diagnosed with a congenital heart defect called complete AVSD. This would require multiple, open-heart surgeries starting in infancy. There would never be a complete recovery. Amniocentesis confirmed Downs Syndrome, which I came to learn can be a cluster of chronic physical problems as well as varying degrees of intellectual impairment. No one can say which ones, how many at the same time or how severe. Each of these is a very serious condition on it’s own. Things like Leukemia, nerve, joint and muscle weakness problems that can cause paralysis or death, digestive problems that lead to chronic vomiting & constipation or even an obstructed bowel that would require corrective surgery immediately at birth, are examples of some of the associated health conditions.
His Level II Ultrasound showed “Echogenic Bowel” which indicated he would likely have bowel problems. I learned, instead of eating and growing he would have a condition called “Failure to Thrive,” due to the combination of weakness from lack of bloodflow before his heart surgeries, combining with an in-ability to take in enough air to breathe from overall muscle weakness, and his reliance on a feeding tube and the possible recovery from the obstructed bowel. As a mother, your first responsibility is making sure your baby eats. Watching helplessly as he throws up everything he eats – EVERY MEAL – EVERY DAY is excruciating for you and traumatizing for your baby. Especially when doctors tell you he has “Failure to Thrive.”
Additionally, my blood work revealed dramatically high levels of certain proteins—so much so, initially my doctors thought the results were wrong and we needed to retest. I learned these correlated with placenta previa and abruption, as well as intra-uterine infections. These conditions were likely to develop as the pregnancy progressed and doctors told me this was a high-risk pregnancy and I could lose my life. Letting Isaac lose his mother at 3 years old and making my husband become a single dad – to handle all of this alone, was not a possibility I was willing to entertain.
Learning that our baby would most likely die before he was a year old, and that being AFTER multiple, traumatizing medical interventions, seemed inhumane. To love your baby and have no way to COMFORT him, hold him, tell him you LOVE him, or be able to convey that all of this pain and scary machines were intended to save him was unimaginable. Knowing he would be on a ventilator was heartbreaking. When my mom was on the ventilator, the nurses told me it felt like a feeling of being constantly gagged with no way of stopping it. You are too weak. If they give you the pain meds so you don’t feel that sensation, you could lose your life so they don’t gamble. As soon as I learned about the mandatory ventilators, I just about DIED myself.
If he survived, our baby would require lifelong, daily care. Knowing our son Isaac would grow up to have to oversee his care after we were no longer able, while he was just starting his own life, career and family was unacceptable. Nor could we allow Isaac’s childhood to be dominated by medical crisis after crisis---just like my childhood with my mother’s medical needs at the forefront.
Whether or not our baby survived, the experience would bankrupt our family before his first birthday, emotionally and financially and logistically. I’ve read nightmare stories of everything I’m describing to you on the public websites on Babycenter.com. And the experience would take us away to the hospital a lot, and emotionally, all the time, causing a permanent fog of just surviving each day. It would literally rob Isaac of his childhood, as I know first-hand.
For us, 7 weeks of devastating desperation followed the diagnosis as we raced to understand everything we were dealing with. With SACRED time, I searched my soul, talked to as many medical experts I could and really thought through every consideration. Terminating was the last thing I wanted to do, and ask the medical professionals who treated me: I went in howling like a wild animal, kicking and screaming in both physical and devastating emotional pain.
Nothing mattered. Every person in my life, of all political stripes offered their support confronted with my reality. Only two, stridently up until the last moment, lobbied hard for letting go to God’s will and trusting, saying Abortion is Murder. And what you’re doing makes me physically ill and want to vomit. One was a best friend. Another, a woman from the website of my nightmares who’d lost a child to this identical circumstance. Nothing anyone said to me was worse than what I said to myself.
The only comfort to be had was that I carefully and methodically thought through everything. I considered every person in the situation, including my baby, and realized the only ones I could save were the living. I literally could not embrace the WORST to be able to HOPE and PRAY for the best. God will have his judgement on me. I have to live with myself.
Many women will find out about these anomalies at their routine 20 week ultrasound. It would be cruel to force a woman to decide on termination before allowing her to research and think through her decision. It is immoral to prevent her choice. This ban would prevent women from seeking out second opinions on the diagnosis.
If this ban had been in effect with our dear Christopher, I know we would have terminated immediately. And I know I would wonder, everyday for the rest of our lives if the tests were wrong and we mistakenly aborted a perfectly healthy baby? I would never recover from that, emotionally destroyed and living in perpetual grief.
To me, deciding to end a pregnancy when the baby is dying is similar to taking someone off life support when it is clear further medical care would be futile and painful. It doesn’t make sense that parents are able to make this decision about a baby who is on life support after being born, but can't make the same decision when the baby is inside the womb.
All of these situations are gravely serious medical situations. Each family dealing with this trauma and emergency deserves the time they need, to research, to search their soul and seek their own religious counsel. Each family has the right to follow their own conscience in making this most profoundly personal family decision. There is no black & white, right & wrong decision. All of it is awful.
This is the ultimate in invasive government intrusion into a family’s life. Government mandating a mother and wife to risk her life, her ability to mother and to force a family into bring a permanently disabled child into the world against their conscience and forcing the baby to endure immense suffering. This is government directly responsible for devastation of many families---financially, emotionally, and logistically. Plunging them into bankruptcy, divorce, loss of their ability to work to provide for the family as they provide care for their child, and for some homelessness or suicides. Some of them even abandon these children at the hospital—I am sure out of complete duress.
The VA Legislature should not be in the business of compounding human suffering.

Thursday, September 16, 2010

i think i'm done now!

Done ranting that is!

I've been keeping that post close to the chest for about 9 months now. I didn't want the sweet wonderful people I know here to be saddened by my opinions and I didn't want my family to be sad that I'm not IN LOVE with Virginia (as I fully expected to be!)

But I've said most of this to them anyway! And I want my blog to be REAL, not just happy and shiny.

And, if my opinions have hurt your feelings--I apologize! I am sorry. I love all of my dear friends and family and wouldn't be intentionally hurtful. And, I'll say it again, if I could get you to all move to Seattle, there just wouldn't be any issues! We could all just live happily together :) And, MOVE ON TO THE NEXT TOPIC of conversation. Oh, boy I'm sure Dave can't WAIT for that moment.

So--we just wait and wait everyday. To hear news about Dave's interviews which determine where we will live for the foreseeable future. That topic will be a separate post.

Living in limbo, and hopefully having answers about our future very soon. At this point I would gladly live anywhere else!! Except that we love our house. (Separate post on that soon too.)

:(

virginia - part III

It's important to read the entire post from the beginning. So if you are just tuning in, start at 'virginia.'

Carwashes
No car washes actually work around here. And the salt crust gets BAD in winter. I for one, do not wanna be outside in winter washing my car!

All signage in Spanish and English
If I had immigrated here from any country other than a Spanish-speaking one, I'd be really mad they didn't have my language! Aren't we supposed to be a melting pot? What about Pluralism? If we have one language, shouldn't we have the top 5 or 10? [NOTE: Seattle does]

All church signage in Korean and English
Let's be clear. I've not actually seen a Korean person for the entire time I've lived here. Chinese, yes. Vietnamese, yes. Indonesian, yes. Korean? Dave has seen two Korean people--downtown--the ones that operate a Bool Kogi stand. There are not even Korean people in line for the Bool Kogi at lunch. So where are all these mythical Korean people who are so dedicated to going to church that EVERY church within a 150 mile radius is working hard to attract them by having their language on the sign? Again, if I was anyone other than a Korean person, I'd be really mad that the church didn't have my language listed also. What about attracting everyone else to your church? Confusing!!

You can die riding the Metro
Apparently it's quite common. Accidents, lack of infrastructure spending. I heard today that violent crime on the Metro is up 24% since this same time last year. So what if Seattle doesn't have a subway system?

Commuting
It can take anywhere from 35 minutes to 4 hours to get to DC depending on accidents, Metro or VRE delays. It's major part of life here. Sometimes the VRE just lets other trains use their track during scheduled VRE times. Blissful.

Opinion: There are no nice neighborhoods (Exception: Annapolis, MD)
Just tiny pockets of pretty-ness and nice-ness. Perhaps I am spoiled from having lived in Raleigh, NC, Pittsburgh, PA and Seattle. There are really really nice neighborhoods in all those places. Lots of them. Where an entire 10 mile radius is uniformly pretty. Here, not so much. There are tiny pockets of pretty developments sprinkled here and there surrounded by lots of humongously-scaled mega housing developments with things like stacked condos, or like this one which emulates the Great Wall of China: (this one only has two pass through spots)



YELLOW Firetrucks.
YELLOW!!! Hello! Who has YELLOW firetrucks? These remind me of albino pythons:


Who does that? Everyone knows, fire engines are supposed to be RED!

The WIND
You would think with all the blasted sunshine that it would be GREAT to be outside all the time (which I was in SEATTLE). I love love love being outside. Walking in the woods, hiking, running. As I took for granted in every place I've ever lived. Here, not so much. First, no shade. The trees are like 4" tall. And the woods are so dense (and filled with COOL wildlife) that it's waaaaaaaaaaaaaaaaaaaay too scary to walk in them. BUGS. Icky ones that give you Lyme Disease. But the ABSOLUTE WORST hands down is THE WIND. The wind gusts regularly around here up to 50 mph. All year round but particularly in Spring. Since there are no trees, the wind goes unabated. Big deal? Ya? What is the big deal? The big deal is that no one has LOCKS on their GARBAGE can. When we first lived here, I actually tried going outside to clean up all the garbage blowing around on garbage day. Chinese take-out from the neighbors, stinky diapers flapping in the wind. I definitely did my own, but I tried doing my neighbors too. ICKY. Double ick! After it happened about 20 million more times, I gave up. It's just downright aggressive wind and it makes it very uncomfortable to be outside when it's windy. Which is all the time. I can't be my normal outside person because in addition to the wind and sunshine (read DRY), there is DUSTY DIRT. And if you know me well, you know that I have to wash my hands immediately when I come into contact with DUSTY DIRT. And just FORGET about DUSTY DIRT on my feet. Seattle has LOAMY SOIL with gentle mists and cool weather with pine needles cradling the woodsy floor and blankets of shade where the trees are so tall you can't see the tops. Oh, and they compost their food waste EVERY DAY CITY WIDE so there is no garbage blowing about on the street. Oh, and no rats downtown either. No BUGS either! Unless you count spiders. Tons of spiders. It just feels really clean there and that pine smell is better than any perfume. I actually have Campfire Memories incense. You can buy that smell.

Anger Management
It's clear that people here are some real power brokers. You can just feel it walking around. It's also clear that some people have some pretty big beefs. You have to feel really strongly about your cause to be a lobbist, activist, politician, and even a service person. You can just feel the tension and the seriousness. This is not a lighthearted place. People are very intense, aggressive and very type A--especially in large crowds or in traffic. Me no likey! So different than the culture of creativity, beauty, personal acheivement and work-life balance I'm used to--in where--yes! Seattle!

Obviously I could go on and on and on. And on. Just remember that my life is pretty constrained right now. It consists of chasing around a 2 year old Tasmanian Devil and driving on Highway 66 with very terse and aggressive and dangerous drivers for at least 3 hours every day. I am sure if my life was normal and included normal things like weekends with my husband going sightseeing or doing home improvement projects, I'd have a very different outlook. And just remember, I'm apparently the only person on earth who talks smack about Virginia. Forbes magazine ranked Fairfax as the number 3 place in the whole country to live. (Can you say kickback?)

It's just a *LOT* of Helvetica. Actually, worse: Arial. Too much bad design! Too much industrial--what's it called? Military Industrial Complex? Yes, that. So sad for our Nation's Capital.

virginia - part II


So the good parts:

----
Super fun friends and neighbors. Yay! We know lots of happy friends and I can get together with them often with Isaac, just not Dave (sniff :( )

----
Dave's job! He has some good flexiblity and it's a perfect match for while he's in school. They're very understanding.

----
The 99% of our family that's here (or visits often) and the fun casual family get togethers which we could never really do a lot of living 3000 miles away. I've travelled a ton while we've lived here and seen nearly every relative I have at least once!

----
Dave's school. Other than Stanford & Berkley, which we couldn't afford the whole package with me staying home, GWU is the very best place for Dave to study Intellectual Property Law. His professors are friends with Eric Holder and are actual Judges in Federal Circuit courts. He can do mock trials at real courthouses and the whole thing is just really inspiring.

----
That we can live well and I can stay home with Isaac at this phase of our lives. If both of us worked and Dave also went to school, no one would ever be home with Isaac and we would eat take-out and live on a mountain of dirty laundry & dishes. We're able to have a semblance of home life that actually wasn't possible in Seattle (too $$$).

----
The wildlife. Wow! Soooo cool. Turkeys, Blue Heron, Butterflies, Woodpeckers, Deer, Beavers, Hedgehogs, Bunnies, Foxes, Bears, Hawks, Owls, Dragonflies, Damselflies and much more! All seen regularly in my neighborhood. (Of course, I used to regularly see Black Bears, Cougars, Coyotes, Bobcats, Eagles in Seattle)

----
Choo Choos. Isaac is absolutely obsessed, and there are railroad crossings EVERYWHERE. It's always a surprise and a joy to see a real CHOO CHOO! And we can hear them in the distance at night.

So--it's all good, yes? Yes?

NO! As I said earlier, I hate it here. Yes, hate. Probably for the mere fact that:
a] IT'S NOT SEATTLE and
b] It's East of the Rockies
c] It doesn't rain 8 months of the year
d] It isn't listed as THE LEAST SUNNY city in the country

Therefore, in my mind, it's as brown and dry as Arizona, as windy as Kansas, and there is no shade to be found. In other words, it's an abyss of nothingness. I know! Strong words! Who knew geography was so important to me!?

The following are all ridiculous and stupid things, but given my whole outlook on Virginia, they're things that I've noticed and find entertaining (irritating?!!).

The ORANGE LADY:
When we first moved here, we were intrigued by the fact that the local news WAS also NATIONAL NEWS because DC is a Federal District. That was very exciting. Combine that tidbit with the fact that the first 50 stations on the cable dial are either news channels or local access channels and you see quickly that NEWS is very very significant here in the region. Then, a sight accosted our eyes as we innocently tuned in to my FOX DC. It was THE ORANGE LADY. Also known as Julie Wright. I don't know whether or not Julie even does a good job reporting the traffic because I was completely and utterly distracted by her appearance. ORANGE. Glow-in-the-dark ORANGE. And, no, it wasn't my set that needed adjusting. Everyone else on the staff at my FOX DC looked perfectly normal and the white shirts looked white. Methinks Julie indulged a little too much in the self-tanner. YIKES!

The JACKED UP Evil-Genius Traffic Lady:
I need to find a picture of this woman--and the set backdrop she broadcasts from. Just wait.

The Fitz Way:
I am sure this man is an excellent business person and a pillar of the community. I know he probably does good works and employs a great deal of people and provides very valuable services. That said, he does embody a quintessential regional-ness. He is the quintessential Maryland man. And, there is a crusted-over quality to his persona. I am sorry. There just is. Unfortunately none of his commercials are on-line. You just have to trust me on this.

Enough with the VANITY LICENSE PLATES already!!
In the State of Virginia, one can choose from over 150 different license plate backdrops, some of which even express political messages. From the innocuous, like 'Educate Our Children' to the highly-charged, 'Choose Life.' If that weren't enough of a platform to express yourself, you can also choose the words that make up the actual plate. So you get the array from the obvious--IMSOCOOL, to the indistinguishable--URSOHI or whatever. Whatever. I'm a design purist, so I vote for simple and I just wish that people didn't have to express themselves quite so much. But then, there is just the plain bizarre and ridiculous...

What I like to call "The Faceless Flautist"

Combine all of this with people's proclivity towards bumper stickers around here, and you have quite the assault of messaging, just driving to work everyday! When Dave and I first saw this one, we thought there was a predator on the loose trolling the streets for small children. YIKES!

virginia

Oh, how emotional it is to live here!

For most people, this is a thriving metropolis with affordable housing, awesome diversity -- possibly the MOST racially diverse and integrated place I've ever lived--and THAT'S COOL!, amazing history & cultural significance, quaint towns, bucolic scenery, talented wineries, horse enthusiasts, world-class sporting events, amazing nightlife and all these great things, yadda, yadda, yadda----right?!!

And, if you read through my past entries, I WANTED TO LIVE HERE. I steered us (a bit?) for exactly where we live after realizing Dave had been accepted to The George Washington University (ranked #3 for IP Law, woot, woot!). Usually if I have a hand in what's happening, I'm a very happy camper with few regrets.

So--to quote Jerry Seinfeld, "Whaaaaat is the DEAL?!??"

I hate it here.

There.

I said it!

Everyone who spends time with me these days hears me KVETCH. Constantly. Seattle, Seattle, Seattle, Seattle, Seattle, Seattle, Seattle. I am a broken record.

Seattle is this. Seattle is that. Seattle!!!!

I haven't left Seattle emotionally. The possibility that we may never ever live there again is more than I can handle!

new JACK city

Dooode.

We might move to New York City.

Most people would be overjoyed and jump up and down with glee for this possibility.

Not me.

Oohhhhhhhhhhhhhhh I am so whiny. I cannot convey my sadness.

The good parts would be that we'd still be within a days drive to 99% of our family. And we'd get to visit everyone a lot, which is fun.

And, it's very green and lush where we would be living. Tall shade trees, possibly mountains and rivers and streams. So--that's all good. Who knew I was so obsessed with geography?

And, where we're thinking of living has very quaint, older homes with big lots. That would be very nice. Lots of quaint little towns with wonderful delis. Yummy, wonderful homemade delicatessen foods. All good, right?

Close to some beautiful countryside to visit for weekend trips. Good possibilities for jobs for Dave.

Better. Better than it's been. Possibly a compromise I could live with long term.

But, oh, I'm just devastated! There is no good solution to where we will live! Much of it is dependent on where Dave will get a job--something we can influence, but not control. If we live on the East Coast somewhere, everything I said above applies. But I will be devastated.

If we move to the West Coast, my heart will leap for joy and every cell in my body will breathe a sigh of relief and feel at home, but I will dearly and deeply miss all the lost opportunities for casual family get-togethers.

Why can't everyone migrate to Seattle? It will never happen, but that would be the one scenario where I would have everything I want out of life!

roanoke rocks!




For Labor Day, Isaac and I went to Roanoke to visit Grama & Grampa, Aunt Stephanie, Uncle Joe and Cousins Ethan, Elise and Evan!



It was Aunt Stephanie and Uncle Joe's birthdays and just a nice opportunity for Isaac to spend more time with his cousins. Evan and Isaac are just 8 months apart and they have lots of fun together :)



And with Roanoke being so close by, we get to visit a lot. Which is very nice.