Floating

http://photography.nationalgeographic.com/staticfiles/NGS/Shared/StaticFiles/Photography/Images/POD/l/lily-pad-261271-sw.jpg

When I was a wee little girl and my father was teaching me how to swim, he told me that my body (technically, my chest cavity) was naturally buoyant, and if I stopped fighting gravity and relaxed instead of thrashing around, I would float and my body would not sink. Therefore, before I learned how to move my legs and arms to propel myself forward, I practiced floating by taking a deep breath, resisting the urge to fight and relaxing my body.

When I was pregnant with Izzy and I was getting reassuring feedback on my screening tests, I thought I wouldn't be able to handle it if there was "something wrong" with my baby. When she was born and it was apparent that "she certainly had some issues", I thought I wouldn't be able to handle it if she were to be disabled. When we were told that she was going to have multiple and severe disabilities, I thought it was the end of the world and I didn't have it in me to cope with our situation. But just like gravity, reality is also an irresistible force and you either fight it, which will make you exhausted and sink, or you work with it to survive.

I've stopped thrashing my arms. I've stopped saying 'I can't' and I've stopped asking 'why' ; instead, I began telling myself 'I can' and I began asking 'how'. I'm floating. I know I am, because I don't feel a sudden sharp pain in my chest anymore when I pass a happy pregnant woman on the way to the beach, nor do I feel sadness sneaking into my heart at the sight of the rambunctious children running around in the park. It doesn't feel like a sucker punch when people say things about Izzy dancing or driving or becoming a prom queen. I don't get disheartened by the progress reports that I receive from Izzy's therapists, as I know that the black-and-white categories don't do justice to her development and do not reflect how much closer she is to sitting up now than she was a couple months ago. I've ditched my baby books and I don't read daunting descriptions of developmental milestones anymore; rather, I shrug my shoulders and celebrate the things that Izzy is able to do, delighting in her little quirks and ingenious ways to compensate for her limitations. I don't feel an underlying sorrow anymore when I hold my daughter, but I feel content as I look into her eyes and cuddling with her fills my heart with joy.

I might not know how to move my arms and legs yet to properly propel myself forward, but I haven't sunk and I'm floating.

A post close to my heart

I read an excellent article today by Louise at Bloom, and it helped me to sort through some of my thoughts and emotions, as I've been reflecting on all the drama and unexpected events that took place in our life this year. For me personally, it was one of the most helpful pieces I've read since Izzy's birth, pertaining to the grieving process and the series of emotions that can lead to the "acceptance" of a child's disability. If you are interested, check out the link.


Her blog is worth visiting anyway.

http://bloom-parentingkidswithdisabilities.blogspot.com/2009/12/grief-unlikely-friend.html

Foolishness

Questions I think about while half-lying, half-sitting on the couch in the middle of the night while holding a mucus-filled baby in a vertical position:

Question#1:

Do I wake up a baby who has finally fallen asleep  to suction her when in her obviously disturbed sleep she is struggling with mucus which makes her constantly cough and which she can aspirate or do I let her struggle?

Question#2:

In this fight against mucus, do I resort to the suction machine that makes Izzy's nostrils hurt and swollen and consequently results in a crying and unhappy baby, or do I let her mucus make her cough which will make her throat and lungs hurt and consequently result in a crying and unhappy baby?

Question#3:

What do I do when a baby's throat hurts and is dry from all the coughing, yet she cannot consume anything by mouth, ergo no liquid can touch the throat to make it feel better?

So after suctioning her and giving her a Pulmicort/Xopenex treatment through the nebulizer and some tylenol via feeding tube and sticking her pacifier in her mouth so at least the sucking motion would alleviate the discomfort in her throat, my brain retreats into its self-protecting mode, which involves thinking about foolishness.

Here are the results of half-sitting, half-lying, half-awake, half-sleeping, half-brained thinking on the couch  in the middle of the night:

30 Reasons why I still don't pass as an American:

1. Watching football and baseball for me is like watching a Chinese soap opera: I have no foggy clue what the heck is going on.

2. The various toilet flushing systems still confuse me. Especially the automatic touchless flushers that sometimes just don't flush for some mysterious reason before I leave the stall. I think they are screwing with me.

3. I would only go out in public in my pajamas under extreme circumstances. And by extreme, I mean a fire or an aerial strike. Under no circumstances would I go to the store in my sleepweare.

4. I'm very bad at abbreviations, which is an essential skill in a country with an abbreviated name where even one-syllable words can be reduced to a letter (!) and all parts of speech in a sentence can be replaced by abbreviations (DJ, my BFF from the OC, IM-ed me from her PC because she was PMS-ing and needed some TLC; and I was like TMI.)

5. I still forget that changing booths are never unisex in the US.

6. I look for the person to whom I need to pay after using a public toilet and feel a gush a gratitude when I realize that I have just peed for free.

7. Hollywood endings that involve orchestra music and clapping give me an itch. I'm much more comfortable with gloomy or heart-wrenching endings. I can't help it, I grew up on Eastern European children movies in which the main character and his dog didn't reunite after all the difficulties and trials that the dog had to endure, instead, by the time the owner got out of the hospital and got to the "shelter" it was too late and his four legged companion was "euthanized" involuntarily. Yeah, it was no Lassie all right.

8. I want to ask the person at the Deli counter to slice up the cheese and the ham for me, as opposed to giving me a big hunk of them. And yes, it is perfectly reasonable to opt for an unsliced hunk, if you want to freshly grate your own cheese with your own cheese grater right before the meal, so shutty.

9. I talk quietly in public places. I talk quietly period.

10. I'm flabbergasted when a salesperson welcomes me with a friendly smile, warmly asks me how I am doing and initiates small talk with me. Actually, I'm flabbergasted when I don't receive crappy customer service or when I'm not being followed around by a sly security guard while shopping.

11. Sometimes I tell people how I am doing when they ask me, even though I know very well that the question is just a formality and part of the greeting.

12. I always introduce myself on the phone when I call someone, and I ask 'Who am I speaking with?' when the person calling me doesn't do the same. I say my full name when I call people I don't personally know (i.e. when making appointments) and I get really annoyed when I get cold calls from telemarketers and they call me on my first name.

13. I'm always tempted to smuggle in some snacks and drinks to the movie theater because they are so stinking expensive there. Oh, and I look for the seat assignment on my ticket.

14. I still secretly believe that cross-breeze (the Huzat) along with weather fronts are our arch enemies and can seriously harm us in mysterious ways. True story, ask any Hungarian.

15. I always carry tissues around in my pockets and in my purse and I usually have enough for everybody with me.  And I can't sniff for the life of me. I just can't.

16. I use an electric epilator (the kind that yanks out the hair by the root) on my limbs and armpits and I don't even wince.

17. I have no qualms about eating liver and other organ meats but I find Wonderbread unfit for human consumption. And I would choose liver mousse over a juicy hamburger any day.

18. I am emotionally unaffected by handsome brooding vampire boys and their shirtless werewolf buddies (or enemies?). And I would rather have an upper lip wax than watch New Moon.

19. I don't question a man's sexual orientation just because he carries around a man-purse and wears capri pants and light, colorful scarves. For me these are completely acceptable pieces in a man's wardrobe.

20. Beauty pageants for little girls creep me out. Especially the freaky mom part of the pageants.

21. I don't think a 100 year old building qualifies as old. Not even middle-aged.

22. The existence of cheerleaders blow my mind.

23. I don't  even flinch when I see a man wearing a speedo. I've grown up seeing  heavy-set older gentlemen watering their lawns in undersized speedos. Not a big deal, really, especially compared to the heavy-set older ladies sunbathing topless on public beaches.

24. I always make too much food and too many courses for my guests, stuff them until they are uncomfortable and then pack up a bunch of leftover for them to take home.

25.  I laugh out loud when they ID me, considering that I could openly buy and drink alcoholic beverages in Hungary when I was 15 and nobody ever asked for my ID. Oh I'm sure they got better about it by now.

26. While I appreciate the spirit behind the "you can do whatever you want, you just have to work hard enough", I totally don't believe in it. That's right, I said it. Maybe because I come from a country where fairy tales don't end in "they lived happily ever after", but rather in "they lived happily until they died". Oh, we are a grumpy bunch.

27. I don't send out Christmas letters nor holiday photos of  our family in matching sweaters. I haven't had one professional photograph taken so far of Izzy with cute little backgrounds in cute little outfits. Shame on me.

28. I've never sat on Santa's lap as a kid. Nor as an adult. In Hungary, it was Baby Jesus who brought the presents at Christmas so sitting on Santa's lap and telling him what gift I wanted would have been absolutely pointless and unreasonable. And sitting on Baby Jesus' lap is  frown on.

29. It blows my mind that people have the liberty to name their children whatever they please, including made-up names or random words (such as Moon Unit, Pilot Inspektor, Audio Science, or Moxi CrimeFighter). Not that I'm against liberty or creativity, and I guess kids need to learn to suck it up. I wonder if one could get away with naming a child just a sound or a string of vowels - like aaaaeeeeeeoooowwwww

30. Sometimes people think I'm being sarcastic when I'm being sincere. And vice versa. Not so good.

"Life without limb-its", or who is Nick Vujicic

"Nick Vujicic was born with no arms or legs - but he doesn't let the details stop him. The brave 26-year-old - who is mainly torso - plays football and golf, swims, and surfs, despite having no limbs. Nick has a small foot on his left hip which helps him balance and enables him to kick.He uses his one foot to type, write with a pen and pick things up between his toes [...]" Read the whole article:

http://www.dailymail.co.uk/news/worldnews/article-1196755/The-astonishing-story-man-born-arms-legs--world-famous-swimmer-surfer-footballer.html

Iron Baby

There are two dominant views when it comes to history: the worldview that history is cyclical, with repeated patterns and cycles, and the view that history is linear, consisting of a chain of events heading towards a great finale. I don't believe in Hinduism nor any other derivative religions that hold up this cyclicality, but nonetheless, it's hard to ignore the cyclical nature of events in our household. Here's how it goes: periodically Izzy contracts a virus that makes her sick, which makes her body produce a buttload of ( I don't know its metric equivalent) mucus, which makes her choke and gag and throw up, and thus puts her aspiration-prone little self at risk of inhaling her mucusy puke, which can easily land her in the hospital on the ventilator or in another place whose name we do not mention, which provides puke-and-saliva-covered me with the proper incentive to stay up all night with her and hold her in a vertical position so we wouldn't enter another cycle that consist of ER-hospitalization-discharge.

Oh, I'm really just being a whiny-butt. We've been home from the hospital for over a month now without any emergencies, ER visits or medical dramas and only our weekly doctor's appointments and physical therapy have provided some sort of relief from this sheer boredom. The suction machine had been getting rusty, I had been getting too much sleep, and Izzy had been having way too much fun and outside time, so It was high time our boring life was spiced up with some mucus and puke. And if Izzy wants to win the toughest baby contest, she needs to stay in shape, so puking/gagging for two hours straight was just tough love from the universe. I really shouldn't be such a baby about this little episode, as it was only a minor incident on Izzy-land, and she only cried through one night and the vomiting lasted only a day and by the time we got home from the doctor, she already stopped puking up mucus from her empty stomach and she was able to keep down the pedialyte with which we pumped her up, thus she didn't even get dehydrated nor she aspirate so we didn't even have to go to the hospital. Not to mention, that today was a much better day as I was able to feed her some oatmeal which she tolerated. She even played a little on her playmat, although I had to put her on a Boppy pillow preventing her from laying flat on her back, but she didn't mind it since it helped her more easily grab her hangy things and to lick them, which is her ultimate goal as a lick-addict. She only played for a little while before she fell into exhausted sleep for the rest of the day, but she played nonetheless. She takes these mucus and puke filled episodes way better than most men I know and should be called the Iron Baby. And speaking of pseudonyms, I'm considering adopting the name Immune System Queen. I've been under siege on two fronts (did I fail to mention that Izzy got this upper respiratory/gastroenteritis virus from Daddy?), have been covered in vomit and saliva, had puke shot right into my face (quite literally), had minimal sleep in impossible positions, yet I'm healthy as a horse. So what if I also possess the aesthetics of one right now?

Dreams

When you first dream about them, you want them to be perfect: smart, beautiful, successful, popular and funny.

Until you lay on an awkward bed staring at your dream on a screen and a strange anxiousness seeps through that pink cloud surrounding your brain and crawls into the dwelling place of all your hidden thoughts and then you know that all you really want is them to be healthy.

Until your dream turns into a nightmare and you realize that for some, the simplest dreams can be hopelessly unattainable and instead of 'healthy' and 'perfect' you merely want them to breath and swallow on their own.

A year ago, I was dreaming about the arrival of our daughter, our new life and our first Christmas together, but my dream did not contain any oxygen tanks or feeding pumps or feeding tubes or therapists or specialists or messed up chromosomes. It's hard to wake up after a good dream . You try to hang onto that fleeting moment on the edge of consciousness when you linger between dreaming and awake. But once the dream is gone, all you have left is the longing.

True Terror

"True terror is to wake up one morning and discover that your high school class is running the country."

I haven't understood the true depth of this Vonnegut quote until I had a medically fragile baby and I began to interact with doctors and miscellaneous medical professionals on a regular basis. As a child, you think doctors are infallible, kind of like the Pope, until you grow a little older and you realize that they, just like the Pope (sorry, Grandma) are capable of making mistakes, and your awe morphs into simply impressed, which will be once again reduced to mere respect as  you finally realize that they are just the nerdy kid from your high school class. This revelation might sound banal but I was much more shaken up by it than by the realization that Santa Claus was not real (which I deduced from the fact that s/he had a bad odor and a badly designed fake beard as s/he was passing out gifts to us in kindergarten.)

See, when I was completing my Master's degree, I had a fairly good idea about the abilities and potentials of my fellow grad students.  I knew who were the slackers and who were the hard workers, I knew who were the ones who flunked their exams and who passed them with ease, I knew who were conscientious and who  were unscrupulous, I knew who would make good scholars, authors, translators or teachers and who were the ones who should not be teaching students, or even be allowed in close proximity to them. And it's the same with medical students: some of them are brilliant and they are all about their patients, while others should wear a warning sign and should not be let out of the lab and become practitioners. See, it's the same, except the MD after their name allows them access to your children's body and not just their mind.

Santa and my butt

December 6 is Mikulás ( Mee-koo-laash) day in Hungary, which is the Hungarian version of Saint Nicholas' Day. Mikulás is the Hungarian alias of Santa Claus who traditionally had his own separate day on December 6th and had nothing to do with Christmas, as the delivery of the Christmas gift was the department of Baby Jesus. It wasn't until the Iron Curtain was lifted that all the Anglo-Saxon traditions sneaked over the boarder and Santa usurped Christmas. Mikulás, who had a much thinner physique when I was a child, visits children on December 6th and fills their boots - cleaned and shined for this special occasion - ideally with treats. Hungarian Santa operates on a merit system: "good children" receive treats, such as candy, fruits and nuts, while "bad children" can only expect sticks (virgács), for the implied purpose of spanking the unruly kids. I know, social services and child psychologists would give Mikulás a firm warning, but they would probably also frown on the shady company he publicly associates himself with, as his companion is the devil-looking Krampusz and is considerably less cute than the Anglo-Saxon elves. 

When I was 19, Jenn, who has been one of my bestest friends in the world for 15 years now, invited me to spend Christmas with her and her precious family in New York. It was my very first time in the US and I had a wonderful time. It was also a great opportunity for me to be immersed in English and improve my intermediate level language skills. One Friday evening she took me to her church where she was a youth group leader and since it was December 6th, she asked me to explain to the youth the traditions surrounding Mikulás day. Of course I complied with her request, but when I got to the part where children clean and shine their boots and put them on the windowsill for Santa to stuff them, I made a slight mistake and confused the word 'boots' with the word 'butt', which created a quite different and most likely painful imagery in poor kids head, potentially scarring them for life. And if my friend Jenn hadn't promptly corrected me, these kids would have grown up thinking that Hungarians were the most perverted people in the world. Happy Saint Nicholas Day, Jenn! I miss you.

Writing 101: Rhetorical devices

In order to make your writing more colorful and vivid, you need to use some rhetorical  devices.  If I were to write a post about health care, for instance, I would probably use an opening line that is somewhat shocking in order to perk interest in my audience. Maybe the following sentence would suffice:

'Can anybody explain to me how it is possible that insurance does not  cover a baby's feeding pump and feeding bags when the aforementioned baby has silent aspiration?' 

And that's what we call a rhetorical question since its purpose is not to obtain the information that the question asks, as I don't really expect an explanation from my audience. If I followed up my opening line with another interrogative, saying:

'Why would insurance cover the feeding pump and feeding bags after all, when eating by mouth would only kill my baby?' 

it would be a further example of a rhetorical question, combined with another rhetorical device called irony. My words are ironical because if taken literally, they express understanding and agreement, whereas  my intent is to convey quite the contrary. (Mind you, verbal irony should not be confused with sarcasm, which is the tone of voice that often times accompanies irony). Another example of a rhetorical device is the metaphor. In order to illustrate how to use a metaphor, I could say:

'Health care costs have skyrocketed' or

'It makes  my blood boil that we have to pay several hundred dollars every month just for medical equipment despite our expensive insurance coverage'

In these sentences, I used figurative language to imply a comparison between a rapidly rising rocket and the rapidly rising medical costs as well as between anger and a hot liquid. Metaphors should not be confused with similes, which are more explicit comparisons and use the words 'like' and 'as'. A simile would be

'Dealing with the healthcare system as the parent of a disabled child is like being a mouse trapped in a maze'. 

Now when I say:

'I cannot really complain about our insurance coverage because it saved us from financial annihilation considering that it has paid millions of dollars for Izzy's medical bills already'

it might seem like I'm using a hyperbole for emphasis, but I'm not.  In order to qualify for a hyperbole, an expression has to be exaggerated, so I would have to use the expressions 'billions' or 'zillions of dollars'. Naturally, the writer can employ a multiple of rhetorical/literary devices within one utterance. See if you can spot all of them in the following sentence:

'I know that my thinking got corrupted as a result of growing up with universal health care and consequently my mind is full of crazy ideas, such as health care should be a person's inalienable right, but regardless, a system that causes millions to go bankrupt while an unregulated monopoly makes huge profit on people's misery is broken."

Hopelessness

I finally watched Revolutionary Road on the weekend, a film about hopelessness and how it disintegrates people and relationships. Hopelessness is a horrible thing indeed. It sneaks into your soul, quietly gnaws on your heart until you wake up one morning to the dull pain of having a hole inside of you. Hope is the air that your soul needs to sustain itself. It helps you to get up after each fall, brush off failure of your clothes, wipe away the hurts and fears and then keep going despite the bruises. You can endure some mind-boggling, harrowing devastation  if you have hope, but if you lose it, even the most mundane things are unbearable.

So in order to help maintain balance in the universe, I also watched a short film about hope The Butterfly Circus, which was sent to me by one of my bestest friends in the world. And because I'm such a nice person, I will share it with you. If you have 20 minutes and you are in the mood for some allegory, visit the link bellow.

http://www.thedoorpost.com/hope/film/?film=4dd298f102c77b625cf37a9e7744ac68

In the eye of the beholder

If you believe that your more attractive friend, sibling, co-worker or fellow-defendant received preferential treatments in various social situations, I am here to tell you that it was not just a figment of your imagination produced by your low self-esteem, it really did happen. But you can't get too riled up by this manifestation of human shallowness because you are also guilty of this crime. We all are, due to a phenomenon called 'halo effect'. Research has shown that people automatically assign positive traits to physically attractive individuals while being completely unaware that their judgement is being clouded by such factors as bone structure and facial symmetry. The dangerous consequences of the halo effect manifest themselves as favorable hiring decisions, higher salaries, more votes, preferential treatment and lighter sentences for physically attractive individuals. In a way, we are still 5 and we assume that villains are ugly, princes are charming, and good-looking people possess such positive attributes as kindness, talent, honesty, and intelligence. Research has found that the physical appearance of individuals has an impact on their perceived intelligence, as more attractive people received higher ratings and were deemed smarter than the less attractive participants.

I wonder if the surprised exclamations about Izabella's aesthetic qualities are also consequences of the halo effect. I'll never forget how astonished her very first visitor was when she laid eyes on her and cried out "but she is perfect". She confessed that after I had told her about Izzy's condition, she expected that her disability would be reflected in her appearance. I did not take offense, and still don't when I encounter the same surprise, it just makes me wonder. When people draw conclusions about her intelligence and tell me that she looks so smart, I wonder if it's her charm and angelic face that enchants them. I also wonder if she would be treated with such kindness if there were obvious tell-tale signs of her disability. I don't know. I'm only sure about one thing: you have to be wary of good-looking politicians.