Man of the Ear

“Are you really sure about this?” I asked Nugget one last time as we spun through the hospital’s revolving door for the third time. (Revolving doors never get old in our family.)

“Yeth. I am thure. I’m ready Mom.” The idea of letting a six-year-old make his own medical decisions seemed nuts but in the end, it’s his body. After spending the summer jumping through more hoops than a participant in the Westminster Dog Show, Nugget will be heading into surgery tomorrow to get an abutment implanted in his skull that will eventually hold his hearing aid and while he can’t wait, I’m ‘bout to lose my damn mind.

Six years ago this chunky Nugget came roaring in and while he was as big as a small toddler, weighing in only an ounce shy of 10 pounds, he had more issues to contend with than his thunder thighs. He had a kidney that didn’t quite work taking up his entire abdomen. He had a divot in his throat that we hoped had closed better on the inside than it had on the out and as a cherry on the top, he had one ear. The other spot was filled in with a tiny nub that kind of resembled a mini-ear but with no opening or inner workings. After failing the newborn hearing test and a few kidney scans we spent his first couple years splitting our time between children’s hospitals and doctors until we finally got the diagnosis that put it all together – Branchio-oto-renal syndrome. Branchio-the divot in his throat, oto- that missing ear and renal, the  hot mess kidney. With an official answer, we were on our way to getting a handle on things.

The first three years of his life were filled with procedures, surgeries, early interventionists, audiologists and a mother that played detective better than Cagney and Lacey combined. Eventually we hit a good groove and things became manageable. A speech impediment and anxiety issues are far easier to deal with than internal organ issues but there was still one surgery left and that one is happening tomorrow.

Because he doesn’t have an ear, there is no place to put the hearing aid and no tube to send the sound through so he wears a BAHA (Bone Anchored Hearing Aid). He’s worn it on a headband up until now that holds the aid close to his bone and transmits soundwaves through his skull. But being the one-eared guy wearing a Bjorn Borg head-band all day as well as a transmitter around his neck connected to one around the teacher’s neck has taken a toll on his self-esteem. (And I thought being the chubby kid was rough!)

Last year a little asshead from a neighboring class did mock him but the perpetrator was quickly reported by the class narc and received a harsh punishment. I asked Nugget if he was upset about the incident, “Nah. It didn’t bother me because I didn’t hear him.” Note to the asshat, if you’re going to mock the one-eared guy, you’ll need to do it on the side he actually has an ear or your efforts are fruitless. This is a prime example of how Nugget handles all this. In his six years he’s gained more self-acceptance than most adults. Last week he came home from school with  a self-portrait complete with one ear, “Dats who I am Mom. I’m just keepin’ it real.” It worked for Van Gough, so why not Nugget?

Six is the magical age when a kid can break free of the headband and get an abutment implanted so the hearing aid just snaps on, streamlining the process and turning him into “a man” as Nugget explained. “When I get my BAHA implant, I’m going to be big, like a man. No more little kid.” He has been counting down to this manhood for years. This summer we got the approval and now it’s time. It’s all great for him but the thought of wheeling my baby into surgery one more time gives me more anxiety than the current political climate. And if I’m bad, my husband The Turk, AKA Captain Anxiety, is about to blow. 

“Baba is thrething me out Mom.” Nugget confided in me last night in bed.

“Right??!? He stresses me out too!” I confirmed.

“Can we leave him home?”

“Sorry Nugs but no. We can send him for coffee a lot though and if we take him he can drive and we can snuggle in the backseat.”

“Thounds good to me Mom.”

So send some good vibes our way for tomorrow, Nugget becomes a man, or at least his ear does and while that happens I’ll be twitching and pacing and The Turk will be getting coffee….again…and again.

 

Here We Go Again…But I’m Cool With It

 

Here 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 3^rd 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

 “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.

I Think My Spirit Guide is a Wrestling Quaker

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…

 

Just A Little Off The Top Please

This week I’m taking on the role of special guest star (you know, like they used to do in bad 70’s shows like Fantasy Island.) over on Canadian Expat Mom’s blog. She’s a groovy gal who put together a book I contributed to coming out soon called – Once Upon An Expat. It’s going to be an awesome read with stories from expat women all over the world.

Anyhooo, in my role as special guest star, I’ve written a little piece about penises. Yes, penises. I can say the word just like Dr. Ruth, though I tend to quickly revert to weiner because inside I’m only 10. Ok, it’s not all about weiners, (oops, see there it happened, I’m an immature child) it’s more about the Turkish circumcision ceremony called a sunnet where a boy becomes a man at age eight when his weiner is whacked. Since our oldest is turning 8 this week, it’s been a hot topic in our house.

Go visit, read my tale of tallywhackers and stay for the Canadian charm. Here’s the link one more time…Just a Little Off The Top

Now go…you know how nice Canadians are…enjoy.

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.

 

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.”

Musings From My Bi-Cultural World

I’m not a very good American. Fine patriots like Donald Trump and Sarah Palin would probably label me an over-educated Liberal, Socialist. (Full disclosure, I’m more Libertarian than Liberal. Back in 2011 I ran a solid campaign to become Ronn Paul’s VP but the bastard never called me. Perhaps he felt my stance on immigration was a bit harsh.) The only flag I’ve ever owned is the one they passed out to family members at my husband’s naturalization ceremony, unless you count that Springsteen bandanna I procured down the Jersey shore on a bad hair day back in ‘98. I vote in every election but only out of my Jedi-like sense of duty not my sense of patriotism. My husband has been an America for two years now and he’s miles ahead of me in the race to be a good American.

I think the problem is that I find a good majority of my countrymen quite off-putting which results in my laissez faire patriotism. How can one be overjoyed to come from a people who created three-pound hamburgers available to you in the comforts of your car with a 900 oz. soda on the side? (Diet soda, of course.) We are the people who created Wal-Mart, fast food and obesity. (See that connection?)

For the love of God, we are the people whose current top presidential candidates consist of a reality show jackass, a surgeon who thinks if the kindergarteners at Sandy Hook had charged the gunman they’d be here today and the wife of a former president. Really? This is the best we’ve got? Oh Americans, you make it easy to get down on you.

But then, just when I get down on my people, something happens to show me the half-full side of the glass.

Last week, a good family friend in Turkey, someone my husband has known all of his life, died. Ali was 39. He came home from work with a tight chest and a shooting pain in his arm. He went in to lie down and was dead an hour later. You, my American reader, know from that brief description that Ali was having a heart attack. You know in that situation you do not lie down. You pop an aspirin and get your ass to the ER, STAT. But Ali was in Turkey where the above is not a commonly known practice for one with those symptoms. You know how to treat a heart attack because in America, whether you want it or not, we look out for your well-being.

You know if you’re on fire you stop, drop and roll.

You know that you should exercise daily and brush after every meal.

You know that if you eat too much sugar you are at risk for diabetes.

You know that if you eat only those 3-pound burgers and 900 oz. sodas you will probably need to know how to treat a heart attack.

Why do you know these things? Because we have a ridiculous number of organizations that educate the masses on issues of health and safety. Starting in elementary school you learn these things and if you missed it, you can catch it on a TV commercial. (In that same vein, we all also know what do to in the case of 4-hour erection. Thank you advertisers.) We know these things because everyone’s health and well-being is important to us in America. Even if you take your health for granted (insert comment on 900 oz. soda again), we are still going to take care of you.

Countless times on this journey of ours with the Nugget our Turkish family has commented on how different things are going to be for him because he is in America. Oh, we know. The advances here are amazing. (2 months ago they literally took my baby’s kidney out of his body through a 4-inch slot, reconstructed it, shoved it back in and it works. Whaaaaat?) Early Intervention resources will hopefully bring my little one-eared wonder up to speed with other kids his age by the time he gets to kindergarten. Audiology gave us his gazillion dollar hearing aid to test-drive for three months before we had to fork over a dime. (When I was in labor with Number One Son in Turkey, we had to pay in-full for the birth before we were allowed onto the maternity ward. Fun Fact: the hearing aid costs 4 times more than Number One’s birth.)

All stupid insurance and big pharma issues aside, why is medical care so much better here than in Turkey and other nations? I think it’s because Americans have a fight unlike any others. We see a problem and we need to fix it. We don’t accept answers without facts. We know things can be better and fight to make it so. Once we’ve solved the problem, we want to educate you so you can be better too because in the end, we look out for our countrymen, even if we don’t like them.

When the doctor determined, in Ali’s apartment, that a 39-year-old died of a heart attack, it was accepted and he was buried in traditional Muslim fashion 24-hours later. No autopsy. No more questions were asked. Ali was dead and that was that. That’s how things go in Turkey. I’ve seen it often.

But that is not how it works in America. Questions would be asked and answers demanded. Tests would be run and evidence pored over. And in the end, those answers would be used to help others.

Through our many, many trials with the Nugget, my mother-in-law has always said, “Margaret can handle it. She is American.” Full disclosure, it has honked me off more than once but I think now I get it. She’s right. I can handle it because I’m going to find answers. I’m going to get the facts and I’m going to work to fix things. I’m going to fight because I’m an American. So maybe I am a crappy patriot but maybe I am not such a crappy American after all. (Insert snaps in the z formation and a head toss as I drop the mic and walk off.)

Riveter at work on Consolidated bomber, Consolidated Aircraft Corp., Fort Worth, Texas. Photo by Howard R Hollem for the Farm Security Administration, October 1942. Credit Line: Library of Congress Prints and Photographs Division LC-DIG-fsac-1a34953.

I’ve Got Me A Three-Foot Rambo

Having a kid with health problems inevitably turns you into a nut job. For reals. I mean, I was a little on the nutty side before that adorable little one-eared, bum-kidneyed, mute Nugget sprang forth from my loins, but he’s only made it worse. In the past two years I could personally give Sybil (You know, from the classic 1977 Sally Field movie-for you young whippersnappers.) a run for her money. While I’ve Sybiled out on every aspect of Nugget’s care- let’s do it, let’s not do it, let’s do it, let’s not – my most regular flips have been in the realm of hearing or To Aid or Not to Aid- The Hearing Aid Debate of The Millennium, as we like to call it at Casa de Turk.

The Nugget has one ear that works like a charm, but his little nub of an ear is totally closed off and they won’t do a CAT scan to see if there are any working parts in there until he’s older. So for the past two years we’ve just let him adapt like the one-eared wonder he is. Fortunately for him, his mother is very loud. Sure, you can totally screw with him by sneaking up on his right side since he can’t hear you coming, but over all, he’s done well hearing with just one ear.

But here’s where it gets tricky, research shows that most kids with one working ear have no delays until they get into a classroom setting. There is also research that shows pathways in the brain that go unused, as in the case of unilateral hearing, can become paralyzed and a hearing aid can wake those pathways up again. You can ask six ear doctors and three will say “Aid that one-eared wonder” and three will say, “Nah, let him be.” It’s been a tough call but since my sidekick has remained the Teller to my Penn, still adorably mute with the exception of humming show tunes, we decided his pathways may need a wake-up call.

His ear doctor was one of those that had suggested a hearing aid from the start but we decided to wait and see what happened. He could hear well enough and, as can happen when you are the child of an Irish Catholic mother and a Turkish father, we wanted to toughen him up and make sure he could function without help. Additionally, I also wanted to be certain he was prepared for the zombie apocalypse when hearing aid batteries would be sparse and Nugget would need to be able to sense the undead coming at him on his deaf side. He’ll thank me later.

I realize now this is utterly stupid. (The toughening up part, not the zombie survival part – that’s totally legit. I grew up in a funeral home. I’ve seen things. Trust me, it’s coming.) I am wholly dependent upon my glasses to do the most mundane things. Would I expect myself to toughen up and squint, consistently waving to strangers or making sex kitten-like gestures to any dark-haired individual who looked like the Turk from a distance? Obviously this would become problematic rather quickly. I have a weakness and I have used glasses to aid that most of my life. Why wouldn’t I do the same for my kid?

So a few weeks ago, deep into the year of “Fixing the Nugget,” we decided to start the hearing aid process. Last Friday we went for our fitting and it was far more stressful than I’d ever anticipated. From his throw-down in the exam room as they checked his ear to his major meltdown in the testing booth, (PS – I’m pretty sure that those sound proof testing booths are exactly what the Death Star feels like – cold, dark and void of all noise. If an audiologist ever did some deep breathing over the microphone, I’m pretty sure I’d crap my pants.) to his colossal screamfest as the woman programed his trial aid, I was sure this was going to be a battle.

Because his ear is closed and thus there is no way for sound to enter, Nugget has to have a what’s called a BAHA, bone anchored hearing aid. When he’s older they can implant a snap or magnet into his skull behind his ear and just snap the aid on but as a little guy he wears it on a headband. The BAHA vibrates and sends sound waves in to the nerves. (Full disclosure: previously I had vanity issues with putting a protruding box on my baby’s otherwise adorable, yet very, very large, head. Ridiculous, I know, but I had to work through it. Of course that was obviously before I realized he would look like a three-foot Rambo. Who would pass on that?)

As we neared the fitting portion of our appointment, I was prepared to execute WWF moves to keep that thing on his head. I know my Nugget and if he doesn’t want to comply, nothing will make him. (Again, I blame that on the Turk.) But the minute that band was slipped on his head, everything stopped. He looked at me, a little confused, and then he flashed a big grin. Somebody finally turned on the other side. Of course I melted, right there in that maroon naugahyde chair. It was the greatest thing I’d ever seen.

Since then, he’s only taken that quarter-sized device that costs only slightly less than the national debt, off his head twice and both times I didn’t have it turned on correctly. He hasn’t tried to hide it and most importantly, he hasn’t tried to flush it-which is a favorite pass time of his. I think we may just be on to something. It took Sybil long enough but finally I think we made the right choice. So far, not one person has asked about Little Rambo’s headband – maybe if you see a kid wearing a headband, using sign language with a box above his ear, even a moron can figure out the deal. Or maybe he just looks so badass that  nobody wants to mess with my three-foot John Rambo. I am still concerned about keeping him in top form for zombie fighting, but he’s a solid little dude and if his skills at jacking his big brother transfer to zombies, he’s be just fine.

Captain Crapper is on the Scene

I’ve heard there are these mythical beasts, small and mighty, that have shocking powers. I’ve read of newborns that do not insist on being up all day long, infants that actually sleep in beds not shared with their parents and toddlers that sleep all…night…long. (Ok, full disclosure, I’m still waiting for the 7 year-old to sleep through the night.) As I said, I’ve read of these but never witnessed them in the wild, more particularly, I sure as hell never witnessed these oddities within the ranks of my own little buttheads. No, not once have the fruit of my loins taken an easy route anywhere but yesterday, I saw a glimmer of something that has provided me with a tiny shred of optimism that the Nugget might just be preparing to cut Mom a break.

After dropping Big Brother off at school, I looked to my mute counterpart in the backseat and suggested, “How ‘bout we go pick out a potty?” My rational was simple; this whole path to privy perfection was likely going to be something we’d be traversing for the next year or more so now that he was two, we might as well get the ball rolling. His kidney doctors warned us that for kids with hydronephrosis, it can be a long and arduous journey to the throne. Some have too much control, some have too little, there can be bladder spasms, blah, blah, blah and a whole catalog of other possible medically induced toilet training landmines. Also, after all the poking and prodding they’ve faced in the diaper zone, they can also have both fear and distain for anything happening south of the border. (Who can blame them? If you’d had catheters shoved up your Wee Willie Winkey all your life you’d label it a no fly zone too.) Add to all that the fact that my half-breed Turk is about as stubborn as Sultan Suleiman the Magnificent and I figured if its going to take forever, we may as well get us a tiny toddler commode and commence the misery.

Next to weathering a multi-child stomach flu-storm and anything that begins with the word projectile, potty training is the most heinous of all parenting tasks. My first half-breed Turk took about a year to train for no reason other than he is just stubborn. It started out as fear of falling in (Which began shortly after his mother got distracted and let go allowing him to plunge into the icy depths of a Trader Joe’s toilet- my bad.) Then he took to mounting full LA Law-worthy rebuttals each time I tried to use logic and reason to explaining why we don’t crap in our pants (PS- Having a mute toddler after a big talker can actually be a blessing…just saying…) and finally he decided he just wasn’t cut out for potty life. Eventually, as I am Irish and he’s got way too much Turk in him, it came down to a hostile stalemate. For every free-range turd that I found in his pants, I took a toy hostage. Finally, when he was down to a three-wheel dump truck and a horrifyingly ugly jack-in-the-box, he relented and he’s been a normal toilet user ever since, (though his aim is sometimes questionable.)

I assumed, as number two is even more stubborn than the first and on top of that we’d likely be dealing with the medical misery of it all, I was in for a much larger fight so when my suggestion to potty-shop was met with a nod of agreement, I ran with it. (PS- why in the hell were there 15 different choices for potty chairs? It’s for pooping. Must it sing? Need there be glitter or an iPad holder? This is setting up ridiculous expectations for their virgin voyage on the porcelain god. Just sayin’.) When we arrived home and opened the box, the Nugget proceeded to de-pants and go right to work. He then continued to use that non-musical, bare bones, port-a-john every time he needed to go the rest of the day. Day two went just about as well, though we were derailed by a couple surprise grenades thanks to a hearty lunch of beans, but that’s ok. He just turned two a couple months ago. I don’t want to get cocky or anything because my name is synonymous with the odds not being ever in our favor, but could I actually have one of those mythical beasts that potty train themselves? Is it possible to dodge the grossest bullet of parenthood? Is this the universe’s little gift to me for all we’ve been though?

Because my life is so surreal that I’m now relegated to exploring the rational behind the Nugget’s expulsion of bodily fluids, I had to immediately consult with my best mom friend for her take. Her response:

“Maybe he’s just been waiting to excel at something?”

To which I replied, “So he choose pooping? You are telling me my child decided to excel at pooping?” Farewell dreams of having birthed a captain of industry for it seems I have only birthed the captain of crap. Now that is good mothering.

I guess only time will tell if Captain Crapper really is going to train himself. It would stand to reason he’d choose now to go all cold turkey on diapers. After the doctor told us how difficult this task would be, I purchased a box of diapers so large they used a fork-lift to get it into my car. More than once we’ve been told that the Nugget is a medical anomaly, and that with his odds he should play the lottery. I just kind of wish we could’ve won the Powerball instead of the Loo Lotto. It’s all relative I guess.

Never bother a brother when he’s reading…or pooping…or both.