When Cross-Cultural Appliance Buying Goes Wrong

STORE-M0RE-FREEZER

There is a roar in my kitchen. No, it’s not the roar of hangry children scavenging for food nor the roar of a rabid beast that happened in through the screen door. It is my refrigerator. The refrigerator my darling husband, the Turk, secured from some sketchy deal last fall. The refrigerator takes up half of my kitchen but was “a really good deal.”

The roar began a mere month after my husband, our neighbor and two strapping young lads, grunted, growled, sweat and struggled to get the oversized behemoth into our tiny kitchen. (Oh yes, you read that right, it took 4 men-to get this refrigerator into our home. But it was a really good deal.) After the Turk removed a few cabinets and hacked a piece of wall out, his fridge eventually fit into our kitchen.

“How good this is right?” He beamed

“Are you planning to start a catering business?” I asked.

“Don’t worry. Later you will love.” He hoped.

Initially the roar was intermittent but now it’s loud and proud and this old gal can’t take it anymore. It’s the kind of dull roar that could push a woman, like myself, with questionable sanity and on the doorstep of pre-menopause, to lose her damn mind. Last week as I was chopping onions to the beat of the roar it occurred to me that if I were to record the sound and submit it as Exhibit A, no jury of my peers would ever convict me. That’s when I told the Turk to watch his ass. This roar is fo reals yo.

How did we get to the point where a refrigerator could begin my spiraling descent into madness when life as a geriatric, full-time working mother (as a middle school teacher, if that’s not enough to usher one to insanity!) with a hyper 8 year-old, special needs 3 year old and crazy Turkish husband hadn’t managed to do it? Who would’ve guessed a Kitchenaid would be my demise?

This fridge mess started about a year and a half ago when we purchased our current fixer-upper. Like most normal people who make fixer-upper purchases, (not those on HGTV who seem to have limitless funds and only work about 2 hours per day) we agreed to make upgrades as budgets allowed.

Item one on our upgrade list was the refrigerator. The house came with one that was not much bigger than fridge I kept stocked with cheap beer in my college dorm room. If me, the 5’4” goddess that I am, can easily clean the top of an appliance destined to house and cool food for a family of 4, that bitch is too damn small. But as life would have it, the very day we took possession of the house and labeled the mutant-micro fridge upgrade number one, Nugget’s kidney issue imploded.

A bum kidney had been percolating inside his tiny body but literally hours before the movers arrived it all went to hell, starting a series of hospital visits and procedures and ending in Mama taking a year off work to care for him. As is the case for most of us not on HGTV, when a household income is halved, fixing-upping goes on hold too. Mutant-micro-fridge would have to stay

For a long year we stooped to search the top shelf, shopped frequently because the damn thing couldn’t hold more than a stick of butter and quart of milk, and because the appliance was about the size of a toddler, used duct-tape to keep Nugget out. (After I caught him in his playroom manhandling an open bottle of wine that had been stored on the door.) But when Mama finally went back to work and that second paycheck returned, the first purchase on the charts was a brand-new fridge!

Like an American, I planned to head to a big box store, hand over some plastic and await delivery from 2 burly men in a truck. In stark contrast, like a good Turk, my husband decided to search out the best (aka sketchiest) deal and do whatever it would take to save a buck. One would think that after 10 years of marriage and 3 years of living in his county, amongst his people, I’d have seen it coming. Back in Turkey when we needed things, they appeared, delivered by hairy men in beat-up Toyotas. No receipt. No warranty. No questions. Things just happened that way.

Things are expensive in Turkey, really expensive and wages for most who are not in a position to take a bribe here or there are low. You could go to the mall and buy on taksit – a payment plan- or you could do as my father-in-law did and roll up in the old neighborhood with your mustache groomed and fedora pulled low to see a friend of a friend who knows a guy who knows another guy. The next day – boom – 2 hairy guys in a Toyota are delivering a heater.

After smacking my head on the top of the mutant-mini-fridge and screaming “Where in the hell am I going to put these groceries,” one too may times. The Turk took his cue.

“Don’t worry. I take care this.”

Two days later he pulled into the driveway in a huge U-Haul, rolled up the back and said. “Look what I get you! It very heavy. I think we need help.” (Yes, you read that right. The fridge was so big he needed to rent a U-Haul. The BIG U-Haul!!)

It was good for a while but then the roar began…and the leaking. The very good deal’s freezer would freeze into a solid block of ice, but then it would melt two days later. Some mornings I would stumble downstairs at 4:30am desperate for coffee only to be met with the River Styx running across the kitchen. The Turk fixed the freezing by buying a deep freezer for the garage and the melting with a beach-towel dam but I knew the time with this beast was limited. (The Kitchenaid, not the Turk – I’m pretty sure he’s a life sentence.)

Finally last week I lost it.

“That is it! This weekend we are going to Home Depot and we are buying a refrigerator. It will come in a box. It will be delivered. It will be installed by people who are not wastewater engineers. It will have a warranty and it may or may not be a good deal. I do not give a damn. I do not care.”

“Ok” he muttered.

“Oh I don’t think you heard me. We did this the Turk way and now we’re doing it the big, fat, lazy American way. Got it…wait what?”

“I say, ok. I cannot take that sound any more. It killing me.”

Last Saturday we bought a new refrigerator to be delivered the following week. The next day, The Turk found a better deal on the same fridge so he returned the first fridge and bought the better deal. (I had my fears but in the end, his deal was made in a store and was actually legit.)  He got his good deal after all but most importantly, this time the good deal will come in a box with a warranty and the two suckers who install it will have to figure out how to get the behemoth with the lower level iceberg out of my kitchen.

 

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Here We Go Again…But I’m Cool With It

 

Full KubiHulkHere we go again. At approximately the butt-crack of dawn tomorrow morning Nugget will be in pre-op. Again. You might remember my grand appeals at the start 2016, begging that this year not suck. Well, now that we’re 7 months in with Trump and his hate train barreling down the tracks, senseless racist violence erupting seemingly daily, bombings in the Turk’s motherland on the reg and countless dead musical legends, I think it’s safe to say my pleading was disregarded. (Thanks Universe! This will be remembered.) 2016, it appears that much like your older brother 2015, you suck.

But I’m no Negative Nellie and I’m taking a different approach to this situation because even though my little guy will be sedated and out of my reach for a couple hours, this one is easy. This time around no one is pulling a vital organ from my Nugget to trim and reshape before stuffing it back into this abdomen with a slew of tubing and the hopes it will work again. This time we won’t be stuck in a hospital room for days, cradling a baby writhing in pain. This time we’re lucky and this year I’ve met a lot of people who have taught me just what it means to be one of the lucky ones.

A few months ago, in the children’s section at the library, I met a kindred spirit. I knew from her first F-bomb over the abstract puzzles we were meant to be. While other mothers discussed things like better options for Christian-based Mother’s Day Out programs (Seriously? What in the hell Hoosiers? I never heard of these before and I don’t get it…but you do you girl…no judgments.) my new potty mouthed friend and I were comparing notes on the two local children’s hospitals. We were discussing the merits of nursing staffs and surgical waiting rooms. We were talking about how much your prospective changes when you spend a lot of time in these places and how other parents are so lucky they will never need to know this. Then we were talking about her son.

Unlike me, my new friend wasn’t one of the lucky ones. Three months before we met, her five year-old didn’t get to leave the hospital. His rare and rapidly spreading brain tumor that initially took her through our shared experiences, took his life just months after diagnosis. When we met she was days from moving back to her native state while trying to hold things together for her younger son and prepare for the “miracle” son arriving in a few months. She was a tough broad and her story and those hours our kids played together will stick with me forever.

And then there is our Deaf Fairy Godmother’s son. After battling cancer and losing an eye to it years ago, her 19 year old is once again battling the same rare cancer he beat previously. The woman that so dramatically changed our life by teaching us how to relate to our little deaf Nugget and cheering us on every step of the way has spent the past month sitting by her own son’s hospital bed in that same children’s hospital. So far, it’s looking good and the hope is there that they will once again, be some of the lucky ones. (Now if you are a regular reader you know I’m not a promoter in any way but if you have the ability, please go to this Go Fund Me page and help out. This family is amazing. They are Deaf parents and activists of 4 deaf sons on their 3rd round of fighting cancer and they could sure use any generosity you might find.)

There are so many more families I’ve met this year fighting fights most would never dream of, so as we go into surgery tomorrow, it’s pretty easy to keep things in perspective. This time around Nugget is having reconstruction work done on some teeth and jaw parts that didn’t form due to his hard-core infant drug use. He had so much radioactive crap pumped into his kidneys those first months it’s a wonder he doesn’t glow. (Though it might explain his frequent Hulk-out moments) And he’s getting a new ear tube since his old one fell out and has been stuck in his Atresia canal for more than a month because it’s too small for the tube to fall out like in a normal kid. (Seriously, can you imagine something sitting in your ear like a bug for a month? No wonder he gets surly.)

As with anything, there is a risk. There’s always the risk of more hearing loss with the tube implantation due to his anatomy but there’s risk without the tube too. Like everything in life, it’s a crapshoot. But so far, we’ve been the lucky ones and I will always be aware of that. So tomorrow morning we’ll kiss our Nugget, then kiss the dice and hope for the best. Even when things are uncertain, (I’m lookin’ at you 2016!) perspective is the key – and hey, with only one ear to fix, it will take half as long! Perspective.

If You Need Me, I’ll Be In My Iron Lung

CDC Iron Lung “You should’ve come in sooner.” This is what my doctor said as I wheezed into her stethoscope. “You really need to work on your self-care.” I tried to argue my case to the petite little flower I call my primary care physician, explaining that due to my possession of the same metabolism as those in the sloth family, I eat pretty healthy and do exercise. (For reals, it’s bad. One lapse and I could totally be the next contestant on My 600 Pound Life.) I thought I was doing pretty good at self-care.

“That’s not the kind of self-care I’m talking about.” She corrected. “If this was one of your kids with these symptoms you would’ve had them in here last week. Why did you wait so long for yourself?” Ah yes, petite little flower, you know me well.

I’ve never been great at putting my needs before those of my family but once the crap hit the fan with Nugget’s health last summer, I definitely lost any grip I might have on self-care. (Though I really think it should be called something else. Self-care sounds kind of dirty and it makes me think of weird things like Gwyneth Paltrow’s promotion of vagina steaming.) I blame my deeply-rooted lapsed Catholicism for my self-inflicted martyrdom. It’s one thing to believe your kids need you, but it’s another when you actually do serve as your kid’s primary language interpreter thus allowing him to communicate with the rest of the world in addition to being his advocate and protector. Between the whole deaf thing, the apraxia of speech and Nugget’s bum kidney, my mama bear genes have been in hyper-drive for about three years so it’s no surprise the crap had to hit the fan eventually.

I’m well aware of the adage; “You can’t take care of them if you don’t take care of you.” But let’s be honest, anyone who has been on the frontlines of a full familial bout of the stomach flu knows that is just crap. Moms don’t get to be sick and that’s that…until mom loses something important like a limb, heart function or the ability to breathe. That’s what happened to me this week and landed me in the ER for one of the very few times in my life.

I’ve had asthma for over 20 years and it’s usually pretty maintained but every few years I need to wheel out the old iron lung and take up residency for a bit. It’s been about four years since I’ve been hit hard so I was feeling cocky. A few weeks ago Wheezy started to rear her ugly head and just kept getting worse so after hitting the inhaler like a crack-pipe (Is that a thing still or is crack whack now and I’m showing my age?) for a week, I decided I might need to see the doctor. However, when I did, my doctor determined it wasn’t my asthma but instead it was my heart.

When your father drops dead of a heart issue at 37, every doctor you see for the rest of your life will panic at the first sign of chest pains. I’m aware of this but this time around the mere suggestion of my heart failing me sent me into a tailspin. I mean I was weak and fatigued, had massive chest pains on the left side, was short of breath and at my age, Web MD as well as my real MD said it could go either way – asthma or heart failure. It was enough to send this old girl reeling. What if I really was like my dad this time? Who would take care of my babies? Oh dear God don’t make me leave them with the Turk!

My doctor ran a couple tests and sent me for more and while I awaited results, I began mentally writing my will, lamenting the fact I have no quality possessions to bequeath and getting pissed that Brexit just tanked any investments I might have left my beloveds. (Stupid stock market wussies.) Being a planner, I determined I wanted Elvis Costello played at my funeral and decided I should go shopping as the Turk really couldn’t be trusted to pick out a stylish yet flattering ensemble for my internment. Just as I was about to start Googling a replacement wife for the Turk (I love that man but God knows he cannot handle things on his own.) things took a turn and this very stubborn woman determined it might be time for an ER run.

Fortunately, my potential demise coincided with the same time grandma got off work so I didn’t have to schlep my offspring with me to the ER but I did make the Turk go – just in case I died behind the wheel. I’d hate to be responsible for a 40 car pile-up on my way to meet St. Peter.

20 minutes and a flurry of activity later, I was getting a rush of IV roids and a breathing treatment that left me feeling like what I imagine a heroine junkie feels like after a fix. I had been so short of air for so many days; I forgot the simple euphoria of oxygen. Three hours later they determined it wasn’t my heart, “just asthma” – though as anyone with asthma will tell you, saying “just asthma” is moronic as it’s like saying, “oh, it wasn’t anything big, just an inability to perform a task essential to sustaining life.”

I was home for bedtime with an armload of drugs and strict instructions to take it easy. So I’ve spent the last two days lounging about (as much as one can with a Nugget and family of Turks to care for), sucking on a breathing machine like it’s a hash pipe and popping ‘roids while warning my family, “Keep Mommy calm or she’ll get roid-rage!” I’ve also promised my family I would attend to my health before the Grim Reaper stops off for a cocktail again. But in the meantime, if you see a good price for an Iron Lung on Amazon, let me know. It looks like I might be due for an upgrade.

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I Think My Spirit Guide is a Wrestling Quaker

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With the exception of a stint in a private school owned by the Turkish mafia (What? Mafia bosses care about education too.) and a year in public school, I’ve spent my entire teaching career in Quaker schools. If you’re not familiar with Quaker schools let me nutshell it for you. Quaker schools were created by the Religious Society of Friends (Codename: Quakers) to educate their young’uns, although now most students are not Quakers. These are groovy, progressive schools where equality is the norm, community service is part of the curriculum and you can’t help but get sucked into their hippie thinking. (Quakers are pretty badass for pacifists.)

After many years in various Quaker schools, the Quaker way is deeply rooted in my thinking and parts of it occasional spring forth from my cluttered brain in times of need. This week, one Quaker idea has really been poppin’ thanks to my one-eared, bum kidneyed, hard of hearing, apraxic, high-strung, Nugget’s latest journey and that’s the idea that “a way opens.” It started in the dairy section of Aldi. (Yes, I’m a value shopper. No shame in that.) I heard, “Relax, a way opens,” over and over in the voice of my former coworker Mr. Ross, a wrestling coach/hippie Quaker. (I’m guessing this means he’s my spirit guide. I’m not sure how that works but admitting I hear voices sounds like a cry for help so I’m going with spirit guide.)

Most likely, Mr. Ross became my spirit guide because he was the one who best explained the theory to me many years ago. “If there’s a rock in the stream, the water doesn’t try to break the rock. The water makes a new way around the rock. Thus, a way opens.” It was pretty Zen for a dude who spent most of his time in headlocks and half nelsons. Ultimately, it might not be the road you were planning to travel, but a road will open, in time.

Right now, I really need a way to open in the, choosing-a-school-for-the-One-Eared-Wonder arena. As of August he phases out of Early Intervention and moves on to big boy school, but due to summer break decisions must be made now. We have 3 choices: the ASL based deaf school, the speech based deaf school with no ASL or the all encompassing developmental preschool which I lovingly liken to the Island of Misfit Toys- everybody who needs a little extra help can find it there.

We tried the ASL deaf school earlier this year and even though signing is his first language, it was a di- freakin’-saster. (Here, in case you missed it.) Since his main issue now is developing speech I had grand plans for him to attend the speech-based deaf school but after demonstrating a flagrant disregard for his mother’s plans by throwing his placement evaluation like Pete Rose in a title game, I began to worry. After discussions with his developmental pediatrician, speech therapist and audiologist last week my grand plans began to crack. All three suggested that due to Nugget’s increasing anxiety issues, he might not be ready for a speech intensive school. Why ya gotta do me like this Nug? Mama had a plan.

With every professional suggesting a holding pattern, I knew what they were really saying…look how well he’s done with you this year… you should give him one more year…stay home with him, just one more year. Sure I nodded and claimed I’d give proper consideration, while my insides screamed “NOOOOOOOOOOOO!” Now I certainly love my Nug and I will agree this has been a great year for him developmentally, but regular viewers may recall my fear of financial ruin forcing me to take up pole dancing on cellulite night as a means of survival. That fear hasn’t diminished and I’m staying flexible just in case. Here in the real world Mama needs to bring in some dough and while I’d love to stay home (Ok, not really, 24/7 Nugget duty is hard and I’m old.) I really must get back to the workforce.

Going back to work not only means freedom from the threat of pole dancing, it also means wearing pants not intended for yoga. (While I enjoy my yoga pants, my pants have not been exposed to yoga in the past year and Mama desperately needs the stand-up-and-suck-it-in goodness that occurs with a waistband.) I long for commutes where my sports radio is not disturbed by constant demands for It’s Signing Time Music Time. (Yes, I’m butch like that but only during football season.) I want lunch without that little bastard Daniel Tiger and coffee that doesn’t have remnants of a toddler’s masticated bagel. All of that is at my fingertips if I just get this school thing right. See, I’ve already taken a teaching position for next school year. (Now you see my plan? Mommy goes to school, Number 1 is in school, Nugget starts school. Easy peasy…or not.) So the need for accurate Nugget placement is high.

Hopefully my Spirit Guide is right and soon, a way will open. In the past, through all our trials, (And there have been an inordinate amount, damn it) a way has always opened. It wasn’t always what I’d hoped for but it’s always worked out, eventually. (Though I may now have a compromised liver and nervous tick, everything has to resolve, eventually.) On an up note, somehow in this stress, I developed not an ulcer, but rather a wrestling Quaker spirit guide so it seems my body has learned to handle stress differently this year. Perhaps a way is opening…

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The Heathen Has An Easter Epiphany

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Ah, Easter. As practicing heathens it’s not really that exciting for us, (though you won’t catch either of us passing up the chance to decapitate a chocolate bunny). We don’t go to mass because I’d hate to have my skin catch fire from the holy water in front of all those poor, innocent, kids just waiting to have their Easter baskets blessed. We don’t go to egg hunts because Nugget is such a tyrant right now that we can’t afford the lawsuits he’d likely generate unleashed upon the toddler masses. We’ll hide a few plastic eggs in the yard that we will continue to find until August, stuff some baskets and have our annual Turkish/American cultural confusion chat about how an egg laying bunny ties in with that whole Jesus on the cross scenario. (It’s been nine years and I still haven’t mastered an explanation deemed suitable. Did Lucy and Ricky have the same struggle?)

Though we tend to keep Easter pretty low-key, thanks to my occasional practice of lapsed Catholicism and the Midget’s post-Catechism questions I have been able to keep one foot in the Lenten guilt pool and thanks to all that guilt, I had an Easter Epiphany this week and it had absolutely nothing to do with egg laying bunnies. (Though I do deserve a few medicinal Cadbury Eggs for the stress.)

As I mentioned a couple weeks ago, (Here it is in case you missed it.) Nugget started a preschool program at the deaf school. The goal was to boost his ASL, get him familiar with the deaf and hard of hearing culture and give this tired old lady a break. Three hours, two days a week, that was it. It didn’t start well but due to my Irish/Catholic genetic make-up, I was certain that tough love was all he needed to find his way.

School days played out like this: I’d drop him off. He’d scream bloody murder. I’d depart, blowing kisses and promising to return soon while frantically signing I’m so sorry to his teachers. Then I’d sit in my car until my stomach lining had eaten itself from guilt before heading off.

I’ve spent most of my life working with kids and I know it is a rare unicorn that does not freak out when first dropped at preschool. I also know that most kids calm down after a belief distraction or in particularly bad cases, after an hour. However, upon my return (every damn time) Nugget’s face was tear-stained, he was sniffling and he would hug me like I’d just returned from war rather than from the Starbucks on the corner. Through  signed conversations with his teachers (parts of which I’m sure I didn’t catch) I learned he’d cried the entire time. They reassured me that in time he would grow accustomed but by week three I wasn’t buying it.

At home he stopped working on his speech. Before he started preschool he had about a dozen word approximations, all vowels and only translatable by me or one fluent in drunken mumbling by toothless vowel speakers, but compared to where he’d started, it was huge. He’d again grown ridiculously attached, like after his kidney surgery. He was so bad that my attempts to pee alone would send him into a fit of terror. On school mornings he would sign, don’t want to go to school over and over and as soon as we pulled onto school grounds he would have a toddler-sized panic attack, hyperventilating and all.

After each drop off the Turk would call and ask me if it had gone better and with each, “Hells no,” he’d tell me to give up. Turks don’t like to cause their babies any undue stress or pain. (They don’t feel the same towards adults. Ask my mother-in-law.)

Last week when I left I had that feeling mothers get when they know something isn’t right. Carol Brady called it “women’s intuition.” I call it, “crap, I screwed up.” It felt like we might be doing more harm than good. I did some Googling, because that’s how I roll at this parenting game, did some thinking, called everyone whose opinion matters and let it simmer.

The Irish/Catholic mother in me wanted him to suck it up. The teacher in me worried he was manipulating me because what’s more fun, going to school or cruising the aisles of Trader Joe’s with mom? The tired old mom in me hated to see her tiny break go and the special needs mom in me realized this was a situation requiring an entirely different examination.

I’m pretty new to this special needs parent thing and it seems to get more complicated the older they get. I learned this week that parenting a special needs kid is pretty much like starting all over again. All those things I learned about momming the first time around, don’t necessarily apply. Sometimes they do, sometimes they don’t and it’s trying to figure that out that is responsible for my increased frequency of visits with Miss Clairol to cover my ever-spreading gray.

Through my fog of guilt and torment, I realized there are lots of things to take into consideration with my Nug that I didn’t have to with his brother. Like the fact that his chronological age and developmental age aren’t necessarily the same and that his medical past has a huge effect on his anxiety and that sensory issues are real. (Even though I always thought they were just a wuss-out.) Most of all, I learned sometimes boundaries aren’t meant to be pushed and I think that’s what Nugget was trying to tell me.

So we’re taking a break. I’d never have done it with his brother and I’d never recommend it as a teacher. But my Easter Epiphany taught me that being a special needs parent means knowing your kid and making decisions that work just for him reguardless if those decisions fly in the face of traditional theory. My Easter Epiphany also taught me that no one is more valuable in these situations than other special needs parents because you really can’t understand unless you’ve been there.

Is this the right decision?  Who knows, but my gut thinks so and Nugget seems to agree.  That’s the other thing I’m learning about special needs parenting, much like all parenting – it’s a crapshoot, so kiss the dice and let it roll. (Meanwhile I’ll be snarfing down chocolate eggs while I wait to see what happens.)

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Cue The Balloons, It’s Rare Disease Day!

February 29, 2016 is Rare Disease Day. Since we only got Nugget’s official diagnosis last August, this is our first. I’m guessing that for those of us who have or parent rare diseases this is a day to whoop it up right? We blow up balloons, whip up a genetic defect cake and celebrate being one in 50,000? Right? No? Well, like I said, this is my first Rare Disease Day so if I bring the wrong hors d’oeuvres, the Rare Disease peeps will cut me some slack.

Ok, just in case you do some Googling and blow my story, here’s the truth. In addition to the party, Rare Disease Day is actually for raising awareness about rare diseases to lawmakers, healthcare professionals, scientists and to the general public. It takes place the last day of February every year and started in Europe (Good on you for being proactive Europe) about 8 years ago and has been gaining steam worldwide ever since.

Personally, I’m down with all this because if you have a kid who’s illness is listed way in the back of the diagnosis manual, rather than on page 5, it’s tough to get what you need. Countless times I’ve reeled off Nugget’s handful of diagnoses to to medical professionals only to be met with blank stares, or “Huh. I’ll have to look that up.” Reassuring right? Sometimes as I’m explaining the syndrome or giving details of things like missing ear canals and jacked-up kidneys I physically work to suppress my urge to proclaim, “Um, you know I’m a C student who went to college for art, right? But I seem to know a lot more of these big, important, sciencey words than you. Doesn’t that freak you out?”

So here’s your rare disease science lesson for the day:

  • A rare disease is any disease that affects more than 1 in 1500.
  • 80% of rare diseases are genetic in nature and 50% of rare diseases effect children (Which totally sucks)
  • There are over 6000 diseases considered rare and those are difficult to track because symptoms and effects vary greatly from patient to patient.
  • There are seldom cures for rare diseases

Here are the odds on Nugget’s combo:

  • He’s got Microtia Atresia, which weighs in at 1 in 12,000 odds. (rare)
  • Due to the Microtia he’s got Unilateral Hearing Loss which has odds of only 1 in 1000 (not rare)
  • His form of kidney disease has odds of 1 in 1500 though add to that his birth defect and it’s higher. (rare)
  • He’s got Childhood Apraxia of Speech, which has odds of 1 in 1000 (also not rare)
  • But when you combine all of his little bits and pieces together to get his overarching diagnosis of Bracciotorenal Syndrome, he’s 1 in 50,000. WhooHoo! Go Nug Go!!! Time to draw Mama some lotto numbers!

Whew. That was lot of big words and math for today and not nearly enough smart ass comments and fart jokes. Sorry about that. I’ll do better later this week.

Sure it sucks dealing with a rare disease. It’s stressful and difficult but here’s how I look at it, I have a little fat guy that is happy and hilarious and it’s looking like he’s smarter than his father and I both. He’s tougher at 2.5 than most grown men from all he’s gone through and because of him I’ve learned a lot of big medical words, everything about medical billing and insurance, American Sign Language, how to adjust a hearing aid, and how to be one hell of an educational advocate.

Rare disease or not, our little one eared wonder is amazing so in honor of Rare Disease Day today, we are going to celebrate. We’re going to whip up a genetic defect cake, turn some healthcare grade latex gloves into party hats and bust a move to the musical stylings of Rachel for Signing Times. I could say he’s one of a kind, but I have actual, genetically tested proof that my Nugget is one in 50,000. That’s pretty freakin’ cool.

 

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I’m Pretty Sure It’s Bubonic Plague…

I’m writing this dispatch from deep within the trenches of what is sure to be the end game for our times. You see dear readers, it seems that in the past weeks our house has become ground zero for the 2016 outbreak of the Bubonic Plague. What? Too dramatic? Ok, the Black Death? Mock me if you wish but I’ve just contacted Amazon.com about ordering up a few black lung machines and an extra hyperbaric oxygen chamber for the living room and when you need to borrow it, I’ll remember this mocking.

As with any hard fought struggle, it’s not difficult to pinpoint the inciting incident that transformed a tiny battle into a full blown war.

Time: 17:00 hours

Day: Last Wednesday

Place: The Multipurpose Room of the family homestead, AKA, My Kitchen

Incident: My precious Nugget, having been rather ill all day, was sitting innocently on his loving mother’s hip as she argued with Nugget’s big brother, yet again, over the fact that he was going to do his homework and she didn’t care that he thought 2nd grade math was stupid because he was going to shut-up and do it anyway. While her mouth was in the fully open and upright position, darling Nugget unleashed a sneeze, expelling a mist most heinous of toxin-filled phlegm which drifted into all open air passages of said mother. Infection was not immediate but inevitable.

Intent: Was Nugget defending his brother? Did he believe he was taking down a tyrant? Or was it simply a very lucky shot by an uncontrolled toddler. The answer is not certain, but the truth is out there. (Sorry, I’ve been watching a little too much vintage X Files this week.)

While horrific, mucus-filled illnesses are to be expected this time of year, it’s not the norm for this family, especially, me – the matriarch. We tend to be astonishingly healthy, capable of dodging most cooties with a deflective wave of the hand. Sure, that Nugget may have drawn the short straw in regards to healthy ears and kidneys, which sometimes compromise his immunity, but for the most part, we don’t get sick.

For the past three years, Patient X, (aka Number one Son) has carried toxins home from the parasitic hotbed he visits daily known as elementary school, but we are generally able to fight those infectious bastards off with our Turk-centric diet and super-powered immunity. (To all those ladies at the food store who look at my cart like I’m running an illegal produce stand, suck it. It keeps us healthy. Or, it did.) In the off chance someone does fall victim to the odd cootie, they never seem to receive the full victimization of their peers and thus, we win again. Until now.

As of today, Nugget has been toxic for 9 ungodly days and I’m going on day 5. What in the name of all that is unholy is this crap?!?! Patient X brought it home two weeks ago and after coughing for two days, rebounded perfectly. Where is the justice in that Universe?

Fortunately, the Turk has not fallen. The fall of any man is a horrific trip into the overly dramatic realm but when a man with a genetic link to Genghis Khan falls ill, the drama reaches Medieval Torture levels. The mere fear of falling ill was so severe this past weekend that it drove him off for a mid-afternoon nap while I attended to the needs of the offspring amid feverish delusions. (For reals. If you think your man is bad…you got nothin’ on this one.)

I’m trying to fight though the phlegm but between the brain fog and decongestants, I’ve managed to delete three chapters of my current book, miss four deadlines, email my tax return to my dentist and send the Midget’s dental X-rays to the accountant, rebuy the same grocery list twice because I forgot I’d gone shopping yesterday and checked out an enormous stack of library books to entertain Nugget and then left them at the library. And it’s only Wednesday morning.

But fear not readers, Nugget and I are fighters. We will continue to medicate ourselves with a combination of early 90’s television and Bob the Builder as we await the return of our health, sanity and senses. (I got fart-bombed by a 7 year-old last night and had no sense of smell to save myself and my poor one-eared wonder has an infection in his lone ear giving him the sense of balance of a 10 month-old.) Alas, we shall overcome. I will pull him up to the top of that soiled tissue mountain and amid the confetti of cough drop wrappers, we will find greatness.

Vintage nurse
Photo: Imperial War Museums Collection

I’d Like To Call a Do-Over

January

New Year, new you right? Well we’re now six days into the new year and it seems the new me is just as snarky, wrinkled and cellulite riddled as the old one. So much for New Year’s miracles.

I don’t do resolutions anymore because I not a big fan of self-inflicted failure. I’m sure somewhere there is scientific evidence to prove that 99.9% of all New Year’s resolutions end in disappointment. Why become a statistic, I say. Instead of resolutions, I just call a do-over. You know, like in elementary school when you were playing kickball but missed the ball and called for a do-over so you could try again. What, that never happened to you? Whatever Pele. (Full disclosure: as an un-athletic chubby kid, without the do-over, I’d have been nothing.) At Jefferson Elementary in 1979, a do-over was a totally legit way to own your screw-up and try again with no condemnation. If it was good enough for the 3rd grade kickball field, it’s good enough for adulthood.

Last year, my do-overs were amazing. I started 2015 with a bang. I kicked that diet soda monkey off my back and for like one whole week I became one of those smug broads that say, “Oh I don’t eat refined sugars.” Ok, so the sugar thing was a bust but I did well with others. I drank water like a camel about to hit the Silk Road and logged enough daily steps to make Jack LaLanne proud. In the evenings I read from actual books instead of cringing at stupid Facebook posts or creepin’ around Pinterest like a fat girl looking for a cake recipe and my positive outlook was actually positive. Nothing could stop me, except February.

By week five of 2015, being Positive Polly and swallowing my smart assed brilliance was giving me heartburn, but I was doing pretty well on everything else. By March I was tired of books and really needed the kind of smut that only Facebook can provide. By April I’d decided I’d been clean long enough and would be safe checking in on Pinterest for new springtime meal ideas. Not so. I was sucked back in like a junkie in a back alley. By May the Coke Zero monkey climbed on for a piggyback ride again and by June when the Nugget’s Pandora’s box of health-problem- sprang open, I just said – screw it all and let the peanut clusters flow with wild abandon.

The second half of 2015 all bets were off as it was a blur of doctors, audiologists, therapists, hospitals, good news, bad news, and lots and lots of wait and sees (And if you’ve ever had a kid with issues, wait and sees suck the most.) But now as we embark on 2016, his kidney is working as expected, though it’s one of the wait and sees. He’s adjusting well to his hearing aid and while our biggest wait and see is in the speech arena, his ASL skills are hard core amazing so I finally feel like maybe, just maybe I can call a do-over and do some things for me.

Now, don’t get me wrong, I’m not giving up booze or signing up for Zumba or any nonsense like that. With age comes wisdom and I’ll be 44 years wise in 2016 so I no longer have to wow anyone with my firm buns. (Sorry Turk, but there is just as much love in these flabby buns.) I’m also wise enough to know that my evening Merlot is the only thing that stands between me and a possible rap sheet. (Humanity is stupid and coping is hard. Red Starbucks cups, Donald Trump, need I continue?)

No, the universe gave me a hard-core schoolin’ on the subjects of priorities and expectations in 2015 so as for my 2016 do-overs, I’m keepin’ ’em real.

This time around I’m not kicking sugar, just cutting back. I spent three days sans sugar and by day three my family began dangling peanut clusters and Tootsie Pops over my head in the hopes I’d bite and end their misery. I might have a problem, but we’ll start small.

I’ll still keep trying to hit my Jack LaLanne level step counts but I’m think it’s time to add some upper body work too. Last night when I was waving at the Nugget upstairs my upper arms continued to wave until he made it all the way down the stairs at toddler speed. I haven’t been sleeveless since 2006 and clearly things have taken a bad turn in those years. Ain’t nobody wanna see that.

If all goes well in the above do-overs I’ll meet my ‘drop a few pounds’ do-over. I’m not a fool that saddles myself with weight loss goals in numbers. No, I just want to put a little more distance between me and a me that might need to ride a scooter to grocery shop.

With a few new career plans, a goal to work harder to reach ASL fluency to keep up with the Nugget, oh and that 5K for deaf and hard of hearing kids that I committed to running in April, that’s it for my 2016 do-overs. (Stay tuned for updates on the 5K. Though I was once a runner, that was 30 pounds, a geriatric childbirth and one knee surgery ago so I predict this will end with a tear-fueled crawl across the finish line but at least it will be a dramatically memorable event.)

So you see, as we cruise into 2016 I’m resolving nothing. I’m committing to nothing. I’m just going to try again. Sometimes, you need to do that when balls are coming at you faster than you can handle. Why beat yourself up? Just call a do-over and try again.

I’m Too Tired For Turkey

Thanksgiving_1900

Here we are on the eve of Turkey Day – the day in which we Americans suck down pounds of fowl and carbohydrates in an attempt to remember all those things for which we are grateful. Thanksgiving has long been my number one as far as holidays go.(I venture to guess most of those with a fondness for food feel the same.) What’s not to love? It’s the gateway to the holiday baking season. Usually, Thanksgiving revs me up and I cannot wait to get my Martha on. But this year, I’m just not feeling it. My Martha hand is limp.

Why? Though we’re currently in a giant medical wait-and-see zone with the Nugget and I have a gazillion things to be thankful for in regards to getting us to this point, I’m not sure why the Turkey Day love isn’t spewing out of me. Maybe because it’s been a rough few months and though I’ve roasted my pie pumpkins (Damn right I make those pies from scratch- crust and all.) and my rolls are rising (Yes, I make those too. Nothing tastes as good as handmade artistry –according to Martha.) I still can’t get into the turkey spirit. Ultimately, I think I’m just too damn tired. In the interest of trying to get to the root of the issue, I decided to make a list and put my finger on why I was so tired but my list just kept growing.

I’m tired of hearing tests. (He can’t hear the beep. He’s got one ear and he’s 2. Let it go lady!)

I’m tired of having our days dictated by therapies and doctor appointments.

I’m tired of pouring my energy into therapies and seeing no results.

I’m tired of diagnosises.

I’m tired of worrying.

I’m tired of my football team sucking. (I’m looking at you Eagles. You’re always hard to love but this is ridiculous.)

I’m tired of snot flowing freely in my home. (For real, someone always has a cold lately.) 

I’m tired of my weird neighbor doing things in the middle of the night- and by doing things I mean I’m pretty sure he’s hiding bodies. (Ok, maybe I’m just tired on this one because I’m up in the night spying out the window on my weird neighbor -but it’s my civic duty thought right? You’re right. I need a job.)

I’m tired of living in a home with three languages and yet still, no one listens to me. (I scream in Turkish, I yell in English, I sign. Nothing. Nada.)

I’m tired of chasing a two-foot graffiti artist with a Mr. Clean Magic Eraser.(I’ve yet to identify a surface that he has not tagged. PS – Magic Eraser doesn’t work on white carpet.)

I’m tired of temper tantrums. (And no, I’m not going to disclose if those are mine or the Nuggets.)

I’m tired of stupid people. (Why are they everywhere and who gave them all such free reign on the interweb? I feel like their numbers are growing exponentially lately. Perhaps Donald Trump can create a registry for them. )

I’m tired of politics. (Your hate filled rhetoric is destroying us, you morons. Grow up.)

I’m tired of the hate that is taking over this world.(Suck it up and get along. I blame the push to remove Coke from our diets. Back in the 70’s we had a Coke, we taught the world to sing. It was all good.)

I’m tired of religion. More specifically, I’m tired of people being asshats in the name of religion. (If you’re going to be an asshat, be an asshat. You don’t need any help from God. And P.S., he knows when you’re being an asshat, did you ever think about that?)

Yes, I’m tired but I’ve got hope because I believe in Turkey Day Miracles. See, I know myself well enough to know that a day or two in the kitchen, dusted in flour (gluten free now as we had to add that to our list of issues – nothing’s easy) and glowing with turkey juice, I’ll feel better.Thanksgiving-Chef-VintageGraphicsFairy1 (1)

Later in the day after I’ve added a pound of pie and a gallon of wine to my short frame, I’ll feel awash in happiness and my tiredness will subside.

By Friday I will deck my halls to the musical stylings of Big Bird singing Frosty while Charlie Brown plays on the T.V. (We’ve been learning to sign Christmas carols too so Nugget won’t be left out. When you sign a carol it’s like instant choreography and who doesn’t love choreography?)

Saturday I will brave the stupid people and venture out shopping, only to return home to the welcoming arms of leftover turkey and Amazon.com where I will buy the things I wanted to buy but was deterred from by the stupid people. By Sunday, I will nap in the recliner while watching crappy football (Safe from disappointment after having watched the Eagles lose on Thanksgiving) warm under the weight of a napping Nugget and a snuggling Midget as a fire glows and my newly decked halls twinkle.

I’m tired but I will be better after these four days off because as my new patron saint Wendy Williams says, “The ocean, after all, is not about stability but about change. Change is normal. Everything changes all the time.And of course, she’s right. I might be tired now but things will change. Things will even out and the worries will fade (or change). I don’t have much hope for that whole stupid people thing  though, but then again, you never know.

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Oh God, I Think I’m Turning Into Andy Rooney…

The inter-web is becoming a cesspool of stupidity and I think it’s time we break up. In the past months, I’ve doubted our relationship often. I find the inter-web controlling and incredibly annoying. Using that criteria, if it were a man he’d have been ditched long ago. If my addiction to the local mom’s buy/sell/trade group and Pinterest (How did I ever make dinner before? No really, how?) were not so strong, I’d unplug and never look back. But alas, I just can’t say goodbye. Ours is definitely a dysfunctional relationship.

In the past few months the inter-web has served me well with my Nugget struggles. Out there in the ether that is the web, I have met amazing parents who have walked my path and told me what to expect after surgery, what brand of hearing aid is best and when to stop listening to doctors and trust my gut. Likewise I’ve been able to offer big cyber hugs to anxious moms with babies awaiting kidney surgery and reassurance to distraught parents who were just handed their own Microtian. In that vein it’s really amazing.

But that, dear reader, is such a small bit of positivity in a growing area of UGH. When did we start using the internet as the main vehicle for bitching and whining? People of the inter-web can find something to complain about in even the most mundane and innocent posting. Post a photo of a puppy with a kid and you’ll quickly be schooled on dog cruelty or child endangerment. Post a photo of food and you’ll hear about unhealthy choices or starving children suffering while you gorge. No matter what you photo you post, you are bound to piss someone off and they will absolutely need to tell you about it. UGH! (I seldom post photos because I’m offensive enough with the written word.)

Then there’s the fake news that really riles up old people and the uber religious who are looking to be offended. Last week a few elderly Facebookers posted about U.S. public schools forcing kids to say Muslim prayers and each poster was adamant this was true. Oh reeeeeeally. Having recently worked in public schools and having a child in public school I ask, where is your evidence old people? ‘Cause I ain’t seen nuthin. Furthermore, I never even saw that when I taught in Turkey – a Muslim nation. Hmmmmmmmmmm…

Next up there was a post, by the same crew of old people, that “Obama is pulling Fixer-Upper off the air because the hosts share their Christianity.” Fo real old people? Tell me you don’t actually believe that the President of the U.S.of A. sits around watching HGTV looking for the rare prayer? (PS – I think it’s been sufficiently demonstrated repeatedly everywhere but on FoxNews that he’s a Christian too…but what evs.) If Barry O is watching Fixer-Upper, I think he’d be far more concerned with the fact that there is always an unexpected expense at the midpoint of the show which the buyers ALWAYS agree to. Come on now. Who believes this? (I’m not a fan. It’s the Turk. He’s a HGTV junkie. I’m only a collateral viewer.)

All of this brings us to the current war on Christmas. (Note it old people, it’s not real.) My Jewish friends and Muslim family members are way better at celebrating Christmas than I, a life-long lapsed Catholic. The only war on Christmas I’ve seen is the war on stores opening for Christmas shopping on Thanksgiving and premature hall decking. Both of those are wars I can get behind. Please stop posting memes that say “I’m going to be offensive and say Merry Christmas this year. Are you?” Nobody cares. Even my mother-in-law who cannot speak a word of English and thinks Christmas is December 31st, says Merry Christmas. I’ve got Jewish friends who send me Christmas cards. This is all ridiculous. If you want to say something offensive, call me. I can teach you how to be offensive in 2 languages. You’re welcome.

Oh, and as for this red Starbuck’s cups crap? Shut the hell up. It’s stupid. Amen.

Ultimately the web is a bunch of neighborhoods and if you know the neighborhood, you know what to expect there. If you want to avoid riff-raff, (I’m looking at you Facebook,) just stay in your neighborhood where the worst you’ll have to deal with is the nosy neighbor. (PS- I’ve recently realized in our real-life neighborhood I’m the nosy neighbor. I’m just a step away from throwing my hair up in curlers and donning a fuzzy robe when I spy out my kitchen window over a cup of coffee. I need a job.)

A few weeks ago the Nugget came home from Grandma’s with a new toy, a Chuck Norris action figure circa 1983. Though his karate chops are slower and his leg no longer has the rubber band for a kung-fu kick, he’s found a place as protector in our home. He sits by the front door at night, travels to work in the Turk’s briefcase occasionally and even made an unsuspecting trip to second grade in a backpack. We’re seriously considering getting rid of our Turkish nazar (evil eyes) and using Chuck to protect us from bad juju. So I’ve decided to harness the protection of Chuck as I surf the web. Though I know the real Chuck is now one of the crazies intent on believing in the war on Christmas and protesting the non-existence of Muslim prayers in public schools, I’m choosing to remember Chuck as he was – a truth seeking badass. Together, 1983 Chuck and I will ignore the crazies and travel the web together and as we encounter those offended by red cups we will say, “Chuck be with you.”

Chuck