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.

Crap. I Forgot About The Healthy Kid

“I like this,” he said as we were both parked on the couch in our flannel jammies with our matching Fred Flintstone feet propped up side by side.

“I don’t.” I replied.

“What?” he was shocked.

“I thought her tango last week was much stronger. This quickstep is kind of blah.” (Yes, I watch Dancing With The Stars and I’m not ashamed to admit it. Is it because I’m a chubby old lady? Perhaps. Is it because I’m a former theatre designer with an appreciation for the flare of fabulousness? Perhaps. Or do I watch in anticipation of that moment when a former-star turned train-wreck face plants gracelessly mid-dance. I think you know the answer dear reader.)

“No Mom, I like this- us hanging out and watching our show.” (Yes, I’ve taught my child how to enjoy a good wash-up spectacle as well. Go on and judge me.) “It’s never just us anymore.” (Punch to the gut.)

“Me too bud. Me too. But I still didn’t like that quickstep.”

It’s tough to be the parent of a kid with a lot of medical crap going on, but I think it’s also pretty sucky to be the brother of that kid too. You spend a lot of time getting dragged along to appointments, sitting in hospitals, being pushed off to grandparents or watching your parents freak out. You have one choice and that is to basically go with the flow and not make waves in the midst of the crap storm swirling around you. Of course you worry too and you care about your brother but in the end, you’re just a little kid and you can’t help but see how much the whole situation sucks.

Long before there was the Nugget, there was the Midget. My sidekick, my shadow, my alter-ego in little boy form. For years it was just the two of us for large chunks at a time when The Turk was traveling or working long hours. Back before the Midget started school, he often went to work with me too, where he would lay low with crayons and books so I could work without having to send him to daycare. We’ve always been two peas in a snarky little pod. Before the Nugget came along, there wasn’t much I did without the Midget by my side so when he pointed out that we don’t get to spend much time alone together anymore, it tore me up. I’ve been so busy juggling Nugget issues and he’s been so good at going with the flow that I put him on the back burner and that’s a really crappy-mom thing to do.

Since the day I brought that sensitive little half-breed into the world back in Turkey I’ve been molding him in my image. He’s a chill little dude with a wicked sense of humor that wears his heart on his sleeve. He loves all things nerdy and he can put a spiral on a football that would put most 10 year olds to shame. He is a true Renaissance man. Unfortunately, he’s also a little too skilled at going with the flow. In his life we’ve lived in 2 countries, 4 states, 5 cities and 6 houses. If you count preschools, he’s also attended 4 different schools and he’s only 7 years old. The Midget has always been on the move so understandably his need for stability is low and that is exactly the problem.

As we sat there munching on our apples dredged in unholy amounts of peanut butter (Did I mention that he’s also my fellow foodie? We bond over our identical palates so much so that if we also didn’t share a love of biking we’d be two massive fat asses. Ok, let me clarify that – he’d be a fat ass and I’d be a fatter ass, like Jabba the Hutt fat…no for real.) anyway, as we sat watching a one-hit-wonder decimate an iconic dance waiting for the start of Monday Night Football, (Seriously, we are a well-rounded people.) I realized my Midget has been upstaged by his brother for long enough. Thus, it’s time to put the baby in the corner. (That didn’t come out right. Don’t call DCS or anything. I’d never actually leave the Nugget in the corner. It’s not even possible because he doesn’t sit still. Additionally, I think if I left him unattended he’d likely burn down the house in 2.5. When he feels good, that kid is hell on wheels.)

It’s fall break here in Flyover Country and my Midget has a whole week off from the stressors of 2nd grade. Football is over and Catechism is on break (Yes, this lapsed Catholic forces her child to go to Jesus school once a week. I feel it’s important for him to know where that internal sense of unending guilt comes from. Go ahead and laugh.) so for the first time in months, time is on our side. During this week I solemnly swear that there will be no reading patiently in doctor’s offices while the Nugget has an appointment. There will be no scheduling our days around Nugget therapies. This is a week of Midget love. (I bet that tag line will get me some kinky visitors. Thank you Google.)

For this week,

I pledge to make no excuses when asked to toss the football in the backyard. (I’m no Terry Bradshaw, but I can hold my own. I just have a constant fear of a Marcia Brady moment. “Oh, my nose!”)

I pledge to do Midget-centric activities. (Legos. Star Wars and Football, in no particular order.)

I pledge to suck-it-up and play Wii (This is a serious sacrifice because I really, really suck at Wii).

I pledge to listen (not just nod and say ‘um-hmm’) when he gives me every mundane detail of a video game or corny television show.

I pledge to take time to snuggle up and watch TV with him after the Nugget goes to bed. (Another big sacrifice because-full disclosure- I’m often asleep with the Nugget.)

And above all else I pledge to make sure he knows how thankful I am that he’s just so damn understanding. (I need to keep him on my side because that Nugget is wild and some days I need back-up.)

Balancing two kids is a challenge. Balancing a special needs kid is a challenge. Balancing the combo definitely has a learning curve but I’m determined to get there, come hell or high water.

Midget
“Look Mom! Boobies!!!!” Yep. He’s all mine.
My Beautiful Buttheads
My Beautiful Buttheads

Who’s Afraid of the Big, Bad Turk?

In the past two years, if I’d been paid by the hour for time spent in doctor’s offices with my Nugget, I wouldn’t have to worry about the ever-nearing possibility of taking that job as a pole dancer on cellulite night. Nephrology, urology, ENTs, audiology, genetics, developmental pediatrics and let’s not even get into the regular sick visits and stitches. When you’ve got a kid with a syndrome, you’re always at the doctor.

The doctors are different but the waiting rooms are always the same. There are nervous parents, panicked parents, we’re-just-here-to-be-safe parents, and old-hat parents.(I’m rapidly becoming the latter.) You can always tell those on their first visit because both parents are in attendance. The Turk and I tried that a couple times. He’d leave work to meet us at the doctor so we could get the news, good or bad, together. Like I said, that only happened a couple times though and the reason was multi-faceted. First off, eventually the Nugget just had too many appointments – ain’t nobody with a job got time for that.  Second, he’d often get confused by medical terminology, causing him to tune out and forcing me to re-play the entire conversation upon our exit. (Full-disclosure: complicated medical terminology in your second language is rough. That’s why my poor Turk knows some rather disturbing facts about lady-parts and birth canals because back in Turkey with the birth of Number One Son, our roles were reversed.) And third, I’ve recently discovered that the Turk has far more power over the medical professionals in our life by NOT being present.

It started innocently. Without the Turk present, I could put off any decision making by saying, “You know, I’m going to have to run this by the Turk first.” Who’s going to argue with a mother wanting to consult with her baby daddy? Then it progressed to using him to ask for further information when I didn’t want to admit my own confusion, “Just to make sure, can you draw that out in a diagram for the Turk since he’s not here?” But recently, it’s taken a more sinister turn.

Last week patience and understanding vacated my earthly body and I lost my crap all over a few medical offices. See, I have a problem with the slow burn, I’m calm, I’m understanding and then one day if nothing gets resolved I just blow like an angry mama bear searching for that asshole that shot Bambi’s mom. One office set me off over a billing mistake. Another of my explosions was over colossal screw-ups in Nugget’s privacy and care, and the third, well, they were kind of collateral damage but they were late responding and I felt they should be schooled anyway. Across the board, I was served a dish of placation with a dash of dismissal for being old lady cray-cray. This was not the desired response so unbeknownst to him; I broke out the big bad Turk.

“Well I’m not so angry but my husband, the Turk, is furious.”

“I accept your apology but you should just be glad my husband isn’t here. He’s a Turk and you know how their tempers are.”

“I’m handling this because my husband, The Turk, is too angry to speak with you right now.”

Of course the knew nothing about any of these situations as he sat obliviously in his office, nor did he care but that didn’t matter to me.

Here is where I’m supposed to say I’m not proud of my actions but that would be a lie. I’m as proud as a fat kid who just did her first pull-up. It was freaking ingenious because it worked. Suddenly instead of receiving the brush-off, I heard:

“We’ll go ahead and write that off and adjust your bill. If you’d like me to call and explain things to your husband personally, please let me know. It would be no problem at all.”

“I can schedule a private meeting with your husband to discuss this and apologize to him as well. I’d hate for him to have bad feelings towards us.”

“Please pass our apologies on to your husband. Should we follow up with him too?”

Ingenious I tell you. I got exactly what I wanted without going off like a pre-menopausal lunatic. It was so simple. I can’t believe I never thought of it before. Here’s why it worked so well: back in the day, when people thought of Turks they thought of Midnight Express or if they were more classically trained, they thought of barbarians. Americans feared the Turks but knew as long as they didn’t try to smuggle drugs across their borders or overthrow their government the Turks would be cool.

Fast-forward to 2015 and thanks to the current mayhem in the Middle East and the overall lack of domesticated Turks per-capita here in flyover country, the Turks are now looped in with all those other mad Muslim bastards over there like ISIS and the Muslim Brotherhood. Sure the Turks can be a bit surly but they are nothing like their nut-job neighbors but as I’ve learned, people in Indiana aren’t aware of that and hence no one wants to piss off a Turk. Better still, no one wants to piss off MY Turk.

Should the Turk ever need to accompany Nugget to any of these offices, I’m doomed. My jig will be up as my Turk is no tyrannical tyrant with a massive ‘stache and a jaunty fez. No, my Turk is a slight, ridiculously handsome, soft-spoken engineer with only a few tyrannical tendencies that are generally limited to his sock drawer and his favorite pens. He doesn’t even have a mustache (He tried once and looked like a pre-pubescent Peter Brady.) and though his temper can be ugly, it’s generally reserved for road rage or the soccer field. But… no one needs to know that, right?

There’s a famous saying in Turkey – Ne mutlu Türküm diyeneHappy is he who calls himself a Turk

I’d like to one up that and say – Ne mutlu Türk’in eşi diyene : Happy is she who calls herself a Turk’s wife!

Turk
Not my Turk, but a fine representation