Music therapy

Dear Etsy

Dear Etsy,

I appreciate you taking the time to reply to my message, even if I felt like it was mostly to placate me. I noticed that the offensive greeting card congratulating people on their child with Down Syndrome is still up on Etsy's website, along with the cards that celebrate women being raped, or getting breast cancer. Also, I couldn't help but notice that the seller broadened his selection and now also offers a card that declares that people with Down Syndrome are awesome but their parents are a**holes. 

Thus, I conclude that Etsy has decided that these cards do not violate Etsy's policy and do not qualify as  "Items that promote or glorify hatred, racial, religious intolerance". Surely, the card depicting the person with Down Syndrome does not contain an explicit message against disabled people, just like the Jim Crow cartoons did not spell out that black people were inferior, nor did the anti-semitic cartoons of the 1930s openly proposed that Jews should be sent to gas chambers. I understand that people can say and write a lot of hateful things under free speech, even though free speech was meant to protect people's political freedom, and not to enable bullying. Since Duchamp's "Fountain" even a urinal can be interpreted as artwork, so I dare not comment on the artistic value of these greeting cards. But perhaps we can agree that the hostility they contain is arbitrary and not a means to a larger message. 

I understand and accept that the seller of these cards has the right to produce hate-promoting, discriminatory crafts as well as Etsy has the right to provide a place for him to make profit off of them. However, by not refusing to associate itself by such content, Etsy is instrumental in promoting discrimination, misogyny and hostility against disabled people, whether it's intentional or not. 

Again, I appreciate your e-mail, but the message that I'm receiving is that these cards are acceptable. 

All the best,

Erika K

It's a wonderful life

Apparently we are playing germ-pong with some mutating rhinovirus at our house. Phil and I joined Izzy’s mucus marathon, just in time to have a snot-filled Christmas. But we are almost over it, and sadly I’m losing my sexy smoker voice. I sounded like the offspring of Janis Joplin and Joe Cocker, had they ever mated. I think my immune system just went on strike. For years it faithfully fought off the delinquent city-germs that hang out on Budapest buses and subways, it endured many months of hospital living and constant coverage in mucus, but I guess it reached its limits. I’m pretty sure it wants more vacation time.

We decided not to contaminate our friends’ homes with our germs and cancelled our Christmas programs. A cold virus is usually not a hit holiday gift. We skyped with our families in the morning, which was evening for them on the opposite side of the globe and even made it down to the beach, a welcome change after my solitary confinement. It was wonderful to breath in the salty air, and thanks to our cold we could not smell the sewage water that made its way into the ocean (a sad result of last week’s monsoon rains). 

We exchanged gifts on Christmas Eve, following the Hungarian tradition, and after supper we watched ‘It’s a Wonderful Life’. Phil fell asleep before the conflict was resolved by the warm, fuzzy ending and I stayed up with Izzy the insomniac under the Christmas lights. The movie made me think of the time when Izzy was diagnosed shortly after birth, when I decided George Bailey style that it would have been much better for everybody if I (and my messed-up chromosomes) had never been born. Yes, being told that your newborn baby will be disabled or die can do strange things to your head and can result in irrational thoughts. Especially when your hormones are way out of whack to begin with. Thankfully, my mind doesn't roam such dark places anymore. And while probably no one would have ended up dead or in prison or in an insane asylum if I hadn’t been born, now that I’ve been here for a while, I think I would leave a small hole behind if I disappeared. 

Uninvited Guests

(Guest post by Phil)

A few months back (I try to do this every weekend) I told erika “Don’t worry about Izzy, I got her, go ahead and go do something for yourself”. She suited up, turned up the Black Eyed Peas on her iPod and headed out to the gym. We agreed before she left the Bean needed bathing. I thought, this should be fun to hang with Izzy for an hour or so. I try to bath her since it’s hard on erika’s back to lift Izzy in and out of the tub. Izzy and I have fun together. She splashes, tries to lick/taste the water and soaks me in the process.I pour water over her little slippery body. It’s a fun time, our time. 

I got her changing matt all setup with a blanket, clothes to change into and a fresh diaper. In true male fashion I like to prep the area, get everything laid out in a logical way ensuring the most efficient bathing experience, not to skimp on fun time. I started to undress her and right as I got her diaper off she began peeing all over. I thought only boys could shoot their pee in the air and all over the place but let me lay that myth to rest. I picked her up and thought I could deal with the pee blanket once I got her out of the tub.  About 2 minuets into bath time she started making some strained faces. I was a little concerned and was debating what to do when her face became a deep red and out from between her legs surfaced the cause of her discomfort. I sprang into action, picked her up and as I held her little dripping body calculating my next move, poop began falling out into her nice warm bath water. I ran her over to her changing matt but forgot the blanket was covered in pee. While trying to maneuver the pee-ridden blanket off the changing pad with one foot I could see poo sliding down her thigh. The pee blanket wrapped around my foot. Balancing on one foot holding a wet, poopy 25 pound child I laid her on the side of the matt that had no pee blanket on it. Once I freed my foot from the pee-soaked blanket and cleaned her little rosy-red cheeks I went over to change her nice warm soapy bath water only to realize the majority of the poop melted in it. I just started laughing. Everything we’ve been through taking care of our daughter and I still do such new daddy things. It was one of those moments that felt like it was right out of some movie.

I changed the water, got her cleaned up and we had our bath time. I finished with her bath and erika arrived home after an hour and a half workout. She seemed a little surprised that I was  just finishing Izzy’s bath. I began telling her what happened while she was away. 

I know I need Erika like I need air. Like Izzy needs a bath. I am constantly in awe of how hard she works to make Izzy and I comfortable and how she looks after us. She is an amazing mom and wife not to mention a gifted writer. I’m so glad you get to see the truly exceptional person I have the privilege of being married to. I can’t imagine my life without either of my beautiful girls and am thankful for them this Christmas season.

(I just highjacked your blog babe haha!) 

Bath time with Daddy

Discovering the Christmas tree

No comment

If you find the below greeting card as offensive and unacceptable as I do, then please let Etsy know how you feel and ask them kindly to remove this item. You can contact them at community@etsy.com or at press@etsy.com.

http://www.etsy.com/listing/60053498/greeting-card-congrats-your-kid-has-down

Update:

I removed the picture of the card, because I couldn't stand looking at it anymore. Also, I exchanged some e-mails with the Etsy support team, but in their last message they asked me not to share the content of our correspondence. They also told me that they will take a close look at the matter. So it goes. 

You know, I don't think I'm  easily offended, and I would have never written to them if the card made fun of my world view, religious convictions, racial or ethnic background, appearance or sexual orientation. I'm all for artistic freedom and I understand that challenging cultural norms and stretching societal standards can bring about positive change. However, sometimes irreverence is just irreverence. Mocking developmentally disabled people who cannot stand up for themselves is irreverent in a senseless and arbitrary way.  Not to mention plain wrong. But how do you explain it to someone who doesn't feel it at a visceral level? 

Adaptation

It’s been pouring for days here in Southern California and the natives are bewildered by this rude disruption of their perfect, mild weather. They are only used to pleasant atmospheric conditions so they are completely baffled by this runny substance falling out of their usually sunny skies. This “extreme weather” is the focus of the evening news and it would probably still get the most coverage even if someone discovered the cure for AIDS. 

Good things are easy to get used to. I grew up in Hungary with grey sunshineless winters and temperatures that fall below freezing, but now I pull out my boots and scarves when a cold front moves in and temperatures drop to the mid-50s (about 13 Celsius). I was always a weather-wuss, but living in Southern California made me simply pathetic. 

Budapesthttp://3.bp.blogspot.com/_nOnPADk4-nI/TQH9D7FF1OI/AAAAAAAAADU/1dN3GUh660k/s1600/Budapest-by-Night.jpg

Our tendency to quickly acclimate to pleasant climates and become easily accustomed to positive change is hardly surprising. What is more fascinating is our ability to adapt to difficult conditions, sometimes to the extremes. I mean, even the Arctic is inhabited with several groups of indigenous people, and I don't mean Santa and his elves.

http://www.windows2universe.org/earth/polar/myths_arctic.html

I’m writing this while sitting on our living room floor next to the Bean and periodically suctioning her and cleaning up her vomit. She has been throwing up since Sunday 5 AM, which means we are going on 35 hours. I was up all night dealing with her non-stop puking and gagging. I suctioned her nose and mouth, tried to prevent aspiration, kept her hydrated, cleaned up the aftermath, and did what I usually do when the gates of mucus hell open up. I put a washcloth on her head, washed her face and body periodically, changed her shirt when it got soaked, caressed her head and held her hand and wondered what people mean when they tell us to take care of ourselves. I don’t really have a choice, I have to pull all-nighters and play nurse 24 hours, the same way I have to drag the vomit-soaked blankets and cloths to the laundry room in the pouring rain when I run out of clean ones. Since Phil leaves for work at 7:30 AM and comes home around 7:30 PM, there is no way on earth that I will let him stay up all night, even if he insists and I have to kick him out of the living room. And since I don’t have anybody nearby whom I can ask to take care of a constantly vomiting child for me, nor can I leave the constantly vomiting child to her own devices (she has no devices whatsoever), I have no choice but do it alone. 

Unfortunately, Izzy’s vomiting episodes are much more common than the pouring rain in Southern California, and sadly we are much more accustomed to it. Don’t get me wrong, it is still hellish every time it happens, just like the biting cold continental winters don’t get more pleasant, but you adapt. Maybe you will always hate the low temperatures, the wind, and the snow, but if you live in a climate that has brutal winters, you have to learn how to deal with the cold, otherwise you'll freeze to death. 

Decisions

Every morning when I wake up to those dreadful coughing sounds that foreshadow another day from mucus-hell, I have to make a decision: my mind has to come to the resolution that I can do this, even if my exhausted body tells me that I can’t. I have to tell myself that I'm able to go on and I can deal with the infinite flow of mucus and the incessant gagging and vomiting, even if it seems humanly impossible to go through another day, another hour or another minute of this insanity. I have to tell myself that I can spend another day locked up in the house or another night sleep-sitting on the couch. I have to, because if I don’t, if I tell myself I can’t, then I really can’t. So I suck it up, hold Izzy’s retching little body, suction her nose, and clean up the vomit over and over again. 

Every time the seizures come and invade her body, and I have to watch helplessly how the light disappears from her eyes again and again and again, I have to decide not to let my frustration and anger rise too high and consume me. So I suck it up and hold her tight, caress her curls, and kiss her light silky-skinned forehead. 

Every time I’m reminded that she is light years behind the “typical” children of her age, as she is still not walking, crawling or even sitting up, I have to choose not to wallow in self-pity. And even if I cannot keep out the fear that she might never be able to reach those milestones, I can choose not to surrender to it. 

Every time I think about how she doesn’t speak or babble or make any kind of sound and how she will never tell me ‘mommy’ or ‘I love you’, I have to make a decision. Even if I can’t stop the dull gnawing pain in my heart, I can choose not to give way to despair and not to suffocate under my sorrow. I focus on her sweet smiles, the loving twinkle in her eyes, her pure luminous essence, and I tell myself that she loves me even if she can’t express it with words or hugs. 

But then there are those random moments when I’m caught off guard, when I see a little girl while waiting in line at CVS, who looks like my daughter, except she is talking and sitting up in her daddy’s shopping cart, holding onto a stuffed animal that she has picked out for Christmas, and I can’t choose not to feel my heart sink deep into my stomach or feel like crap on the way home. 

Tangent

A Pilinszky poem got stuck in my mind and no amount of Christmas carols had been able to clean its haunting lines out of my head. I attempted a translation, just for the heck of it, and I probably butchered this literary masterpiece.

The original Hungarian:

Pilinszky János: Négysoros

Alvó szegek a jéghideg homokban.

Plakátmagányban ázó éjjelek.

Égve hagytad a folyosón a villanyt.

Ma ontják véremet.

My translation:

Janos Pilinszky: Quatrain

Nails sleeping in ice-cold sand.

Nights soaking in poster-loneliness.

You left the light on in the entrance.

Today my blood will be shed. 

Chinese water torture

Her body goes limp, her head drops forward and her eyelids droop as if she had suddenly fallen a sleep, like old people in the midst of a reminiscing conversation. “Oh how cute, she is sleeeeepy” sometimes people exclaim enchantedly when they witness the fallout of the electrical storm in her brain. It’s not cute. It’s an effing seizure. One, two, three seconds later she reboots and looks around for her pacifier, which she can’t keep in her mouth long, because her nose is stuffed and she cannot breath. She starts coughing from all the phlegm running down her throat and sounds like an old smoker after awakening in the morning. One big cough makes snot bubble out of her nose, her poor chapped red nose, and I have to suction her again. Rudolph the red-nosed reindeer is playing on my Pandora Christmas station, I desperately needed some holiday cheers. She knows what I’m about to do when I lay her down on the floor next to the suction machine. She makes that sad face with the wrinkled forehead and the pouty lips that always break my heart into tiny pieces and she fights me as I put the mushroom suction head in her nose. She fights until her body goes limp, and her head drops and her eyelids droop as if she had suddenly fallen a sleep. I put her on her blanket next to the Christmas tree that she loves so much and let her roll around and wiggle and play. I want to work on rolling and sitting with her but every time I try her body goes limp, her head drops and her eyelids droop as if she had suddenly fallen a sleep. Seizure, snot, cough, gag, suction, seizure, snot, cough, gag, suction, seizure, snot, venting, cough, suction, seizure, seizure, seizure, seizure. I once read that it was Hippolytus de Marsiliis (a sixteen century lawyer) who invented what has become to be known as Chinese Water Torture. Hyppolitus observed how drops of water dripping slowly on a stone created a hollow and he applied it to the human body: victims were strapped down while cold water was slowly dripped on their forehead. It drove them mad. Ironically, sleep deprivation as a form of torture is also ascribed to the ever so creative Hippolytus. Watching water slowly drop on your forehead almost sounds like watching your daughter seize again and again and again and again. Indeed, seizure-watching would be a highly effective interrogative technique: I'm about to confess to be the perpetrator behind every unexplained crop circle in the world.  I pick her up and hold her close to the Christmas tree so she could better see it with its lights and ornaments. She touches the tree and it makes her smile big toothy smiles, until her body goes limp and she bumps her curly head into my bony shoulder. I sit down with her, hold her tight, burry my face into her soft curls and while the sounds of Christmas fill up the room, I try to will her seizures away. 

Dear Santa

December 6, 2010

Dear Santa, Mikulás, Ded Moroz, Père Noël, Jultomten, or to whomever it may concern:

My name is Erika K and I’m writing to you regarding this year’s Christmas presents. For myself, I would like to request 1 full night sleep in my bed without any interruptions, while for my daughter (Izabella K, aka The Bean), I would like to ask for one full day without mucus, suctioning, vomiting, seizures or any other distress or discomfort. I would be much obliged if you would fulfill my Christmas wishes.

Yours truly,

Erika K

Happy Hanukkah!

Competitive coughing

Remember how I told you that my immune system laughs in the face of mucus and I never get sick, even if I’m buried under a week’s worth of phlegm? Well, scratch that. Last week, Tuesday, I woke up on the living room sofa (where I had been spending my nights to keep Izzy in an elevated lateral position) and I felt a lump of broken glass in my throat. "Fantastic." - I muttered to myself in quiet annoyance while I mustered the strength to open my eyes. Calling in sick wasn’t an option (the downside of not working) so I peeled the snoring Bean off my numb body and dragged my achy self to the medicine cabinet. I usually opt for natural remedies but I needed something heavy-duty and fast acting to get me through the day and help me deal with Beanie’s hour-long coughing fits and mucus fests. 

I probably looked like ‘female zombie number 2’ on the set of “The Walking Dead” as I was rummaging for drugs and while becoming exceedingly frustrated over the realization that all of our cold medications had long expired (the downside of rarely getting sick). Luckily, I found some ibuprofen before the Bean woke up and all mucus hell broke loose and then I must have switched to autopilot because the rest of the day is veiled in mystery. I don’t remember how I got through the day and how I managed the Bean’s violent coughing fits that crescendoed into a mucus extravaganza. Carrying out the pump-feedings, giving medications and administering treatments are easy breezy, I can do them in my sleep, but for fighting the mucus, the force must be with you. 

Phil, who turns into Superman as soon as he takes off his glasses, picked up some unexpired cold medications on his way home from work and, as usual, saved the day. He got home around 8:30 PM and I fainted into sleep around 9. When Phil wasn't able to keep his eyes open anymore I took over the night shift and I was praying that Izzy would sleep at least a couple hours before her middle-of-the-night snot-fest begins. 

The night was equally fun: the Bean and I had competitive coughing on the couch, gagging and chocking on phlegm in unison. Beanie beat me in the ‘best snot producing cough’ category, but she could not compete with my dry hacking cough, which I still have along with a raspy smoker voice. I periodically have the urge to break out in a Joe Cocker song but my voice also cracks as if I was a teenage boy reaching puberty. 

Wednesday Phil got a half day off before Thanksgiving (God bless his workplace abundantly) which he spent playing nurse between Izzy and I. At least Izzy was cute and fun and chipper between her coughing fits, whereas I was just a feverish unfun slug. Then Thursday rolled around and I had all the ingredients for a Thanksgiving feast in my fridge waiting for me. Thank God we had invited a friend over for supper, otherwise I would have said forget Thanksgiving and the Pilgrims and the 12-pound turkey and let's just have cereal. But luckily JB was coming and I made the turkey and the stuffing and the mashed potatoes and the cranberry sauce and the 5-cup salad and the sweet potatoes and the pumpkin pie and I was very proud of myself for recovering so fast. Until the drugs wore off and my symptoms returned with a vengeance. As the weekend progressed, we gradually transformed into the house of mucus: my head was full of snot, Izzy had a 6-hour mucus-vomit marathon and Phil's immune system started to cave in under the double attack. He finally got sick and his long weekend was extended by a sick day. 

Unlike my cough, the Bean is decidedly doing better: she stopped having episodes in the middle of the night and she works through her 5 AM coughing fits in a mere 45 minutes.  Her secretion is clear, she doesn’t have a fever, she is chipper in between fits and all her guck is upper-respiratory: her lungs are clear. Furthermore, she’s been able to sleep in a horizontal elevated position, i.e. in our bed, which is still not ideal but a definite step up from sharing the couch with her. 

Pictures of the week: Snuggle