Upstream Nugget

I’ve developed a new obsession with one of Mother Nature’s insane inventions. This has happened a lot this year. The boys and I have spent hours on the Cape watching jellyfish (or as I call them, floating danger loogies). I continue to remain fascinated by all things cranberry bog.  And of course, I have that disturbing love/hate relationship with Debby the Horny Turkey and her posse living in my woods. (ICYMI here’s Debby’s tale) But now that it is herring run time, I have a brand new obsession. 

River herring are a blueish-silver fish, about 12” long that spawn in late spring. Here’s the kicker, they have to leave the ocean, head to a stream, swim all the way upstream, and often up fish ladders, to return to their place of birth to spawn. Yes, they have to roll back up in their hood o’ origin to procreate, because Mother Nature said so. Impressive, since I can’t even handle taking a flight with more than one connection to get back to my hood o’ origin south of Des Moines.

People flock to a small stream next to Plymouth Rock to catch the herring action and of course, my badass homeschool self decided this year we should too. I had no idea what to expect because all I knew of herring was that it came pickled in a jar and smelled like ass. But after about 9 months of this homeschool jam, I’ve found that anything can become a field trip, especially watching fish swim upstream. So we bundled up, because yes, even in May we’re still wearing hoodies and pants in New England, and set sail for Plymouth Rock. (Ok, we didn’t sail and it’s only a 10-minute drive but when in Rome…) 

As we headed up the path next to the stream there was little to no action with the exception of Steve. That’s what Nugget named the lone silver devil floating belly-up at the start of the stream. “Gueth Theeve didn’t make the trip.” 

“Mom, if you brought us here to see a dead fish, I’m out.” Number 1 added. He’s rapidly morphing from my darling boy into a surly teen and I am not a fan.

“Have faith in the fish, buttheads.” 

By the time we reached the halfway point, the magic was happening and within a few more yards the entire stream, about 15 foot in width, was jammed full of herring, all swimming their little fins off and seemingly not moving an inch. The speed of the stream was intense and those fools just kept going. No one gave up. No one retreated. They just kept swimming against the current, determined to make it upstream. Once they actually made it through this rough section of stream they would face a massive ladder that each fish would have to fling itself up, step by step, in order to get past the grist mill blocking their way. The ladder would lead them to a quick respite in a pond before they took off on the next leg of their journey.  We were catching these guys not even a ½ mile out of the ocean, and at the very beginning of their journey. I was exhausted just watching them much like that time I peeked in on a spinning class.

The odds of survival and various facts were posted around the site and it was discouraging. It’s probably a good thing river herring aren’t avid readers. Their chances of success were slim and the odds of their kids making back to the ocean were even slimmer. There would be a lot more Steves along the way. But I couldn’t help but feel hopeful. I wanted to whip out some pompoms to cheer those little fishies on and give them some high-fins for effort. I couldn’t put my finger on why, but I felt connected to these herrings, deeply.

It wasn’t until later I realized why I felt so connected. (I mean, besides the fact that I’m a Pisces – obvi.)  Those fish, giving their all and believing in their souls that they were going to make it, were just like my Nugget. From the day that kid was born he has been swimming upstream. He was born with Brachio-Oto-Renal syndrome, a genetic syndrome that occurs one in 50,000. It came with one ear, a bum kidney, hearing loss, ADHD and a whole host of things that continue to pop up as he ages. He had more surgeries and procedures before the age of 7 than his father and I have had in our entire lives. People underestimate him at every turn but that sassy little Nug just keeps swimming with full-force.

Recently he had a major set-back when we realized his football coach was assuming that he was severely disabled because he can’t hear. The coach was treating him like a token charity chase by allowing him 2-3 plays per game and making a huge deal out of it and patting himself on the back. I was furious. Nugget was devastated. He’s played football for three years and this was the first time anyone assumed he wasn’t capable because of his hearing. 

Back at home, he packed up every piece of football gear he had and asked me to throw it away. I wanted to beat the crap out of that coach. He might be 6’5” and 300 to my 5’4” and none-yo-business, but a pissed off mama can take down Godzilla if it’s to defend her baby. But a couple days later Nugget informed me, “I’m quitting that team. They don’t deserve me. I might play next year with a better team or I might take up hockey instead.” And that was that. He was back in the water, swimming upstream, determined to get where he wanted to go reguarless of obstacles in his path.

I will always be sad that Nugget has to swim upstream, but I’m also in awe of my little herring. Just like those crazy fish, he defies the odds and keeps on swimming. He’s perfectly situated for world domination though. Some day when you’re taking orders from a one-eared, hyperactive nutjob with an epic lisp and potty-mouth, don’t say you weren’t warned. Nugget will be one of those herrings that get where they’re headed and I’ll always be there with my pompoms.

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.

 

Mama Don’t Need No Tribe

Everyone has those words or phrases that rub them wrong way like the ever-despised word “moist.” Personally, that one isn’t a trigger for me because when someone says “moist” my mind automatically follows that with “cake.”

It’s not gross words that rile me up, but more phrases that might be found in a middle management training manual, like “team building.” Or, “I just want to circle back to that.” Unless we’re out riding our bikes to the Dairy Queen in 6^th grade or rounding up our wagon train to conquer the Wild West, I see no need for you to “circle back,” just call me.

But the phrase that has really been eating at me lately is “my tribe.” As an incredibly politically incorrect human, it’s probably shocking to most that I might be a little uncomfortable with that term. I’m especially uncomfortable when “my tribe” is used by a bunch of white chicks in reference to likeminded friends when they’re out grabbing pumpkin spice lattes. Even we offensive broads have limits.

This whole tribe thing has been stuck in my brain lately though and I’ve been giving it way more thought than necessary. It started last week when I was having a difficult time with Nugget which resulted in a true special needs mom meltdown. That’s when it was suggested that the answer to my problems was that I needed to find “my tribe.”

At the risk of sounding like an 80’s Rob Lowe character, I’ve always been a loner. People are fine and all, and I do have a pocket of friends I consider to be sisters and gay brothers, plus a huge web of people beyond that, but I’m an arms-length kind of gal. I don’t do tribal friendship. (Perhaps because I don’t do pumpkin spice lattes?) However, in my pocket of sisters and gay brothers and even in my web beyond, I don’t have any close special needs parent connections so my journey with Nugget has been a lonely road.

When you have a kid that carries a genetic label few have ever heard of and even fewer can spell (Branchio-oto-renal syndrome doesn’t usually pop up in spell check), and has a whole host of diagnoses that follow him around, it’s easy to feel like Tom Hanks in Castaway with no one to share your woes but Wilson the washed ashore volleyball. (Full Disclosure: sometimes when the Turk and I do talk about Nugget’s issues, the big English words throw him off and he basically turns into Wilson too. I love him but I know his limits.) But a tribe? I don’t know about that kind of hippie madness.

Last year Nugget finally started to catch up developmentally. About mid December, that dude started busting through every limitation that had been weighing him down. He gained years in months and it was exactly what my mom heart needed to believe things were finally going in the right direction.

And then this year he got stuck in a mudbog. Since school started this year Nugget has stagnated. No growth. No change. When I persist, “Let’s work on letters.” I’m met with, “Nope. Can’t do dat.”

If I try, “Let’s write together.”

I get, “No. I can’t.”

It’s killing my old teacher heart.

In addition to his genetic anomalies, Nugget also drew the long straw on a healthy dose of stubborn Turk genes too. Many a teacher and medical professional have said, “Wow, he really only does what he wants to do.”

To which I can only respond, “It seems you’ve not met his father.” But recently those Turk genes are about to do me in and have me worried of they are a sign of more than just obstinace.

The driving force behind my recent meltdown, the one that spurred the whole tribe thing, has been Nugget’s hatred of everything resulting in hissy fits that would make Naomi Campbell proud. There are tears, flailing, occasional profanity and relentless arguing and that’s just on Nugget’s side. I’m about a step from postal.

Simply put, Nugget doesn’t want to do anything.

Go to school – hissy fit.

Go to anything for his brother– hissy fit.

Grandma shows up – hissy fit.

Grandma leaves – hissy fit.

And the list goes on and on. After one particularly rough day when the hissy fit was so bad at school he had to go home, I immediately spiraled into a pit of mom guilt so deep even mid-day, high-dollar chocolate couldn’t bring me out.

It’s been a rough year with a new and highly incompetent teacher (It’s not brain surgery girl, it’s special ed preschool.) and I’m beginning to think special ed is holding him back. I spiraled from, maybe we should pull him from that school, to maybe if I weren’t so busy taking care of other people’s kids all day mine wouldn’t be in this mess.

I talked it out at work, (A major advantage to dealing with special ed school issues for you own kid is working in a special ed school) until I finally relented and called Wilson – I mean, the Turk. I’m not sure why I was moved to call him but I assumed that women with tribes do that kind of thing.

“I don’t know, I just think maybe if I weren’t working all the time I could get Nugget going again and put an end to this crap.” I whimpered on the verge of tears.

“No.” The Turk replied.

“What?”

“Honey, calm down. He is asshole. Even if you home all the time, he still be asshole.”

“Are you joking?” Sometimes it’s hard to tell with that accent.

“No. Don’t you remember Number 1 at this age? He was asshole too. He is not asshole now so they get over it. You don’t need to quit.”

The Turk was right. There was never a time when I understood more fully why animals eat their young than when our oldest was four. He was indeed a raging asshole but fortunately, he grew out of it.

“When I kid, I hate school too. My father get so mad because I never learn letters or write. I not do it because I thought it was stupid. Maybe he’s the same. Relax. We get him there.”

And with that, my meltdown ended. I didn’t need some ridiculous tribe; I only needed Wilson to finally talk back to me on my desert island.

Unfortunately, we are only 3.5 months into this grand age of 4 and with some wine and more high-dollar midday chocolate, I might make it through. Better than that though, I realized a gal doesn’t need a tribe as long as she has a straight shooting Turk.

 

When Cross-Cultural Appliance Buying Goes Wrong

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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Terrible Twos? Ah Hells No, Now It’s The Tyrannical Threes!

I’m relatively certain that the individual who coined the phrase, “terrible twos” did so before his or her child turned three. There is not a parent on Earth that would honestly agree that a two-year-old tyrant is worse than a three-year-old tyrant. Ok, maybe that Duggar woman would disagree but after passing 82 children through her lady parts, it’s understandable that her sanity might be compromised.

My darling Nugget’s birthday was this week and, as usual, the date marking my successfully delivering offspring into this world makes me a bit emotional. On both of their birthdays I can’t help get little weepy as I recount those glory years, when they were cuddly and smelled like…well…babies or dwelling on life when they were tiny bundles of love that wore what I put on them and didn’t sass me or argue about every damn thing! (Previously I would have said before they could talk but in the past year Nugget has proved that one can sass and argue just as effectively in sign language so there goes that thought.)

Amid all the mushy melancholy and buttercream frosting, I had a thought. Maybe since the Nugget had such a rough go as a two-year old, what with the whole deaf thing, the apraxia thing, the bum kidney thing, and on and on…maybe the universe will give me a break and we will waltz through three like a pair of washed-up musicians on Dancing With The Stars. I mean, after the past year, don’t I deserve it?

I have good reason to fear three. My darling, kind and loving Number One Son was literally Satan on Earth when he was three. The sweet child I’d doted on since birthing him in a crazy Turkish hospital morphed into a pocket-sized Attila the Hunn the moment he blew out those three candles. Add in his adult-sized vocabulary, stubborn Turk genes and hot temper (No really, by 4 we were seriously considering anger management classes for him.) and I often doubted that kid would see 4.

Yet somehow, like childbirth, I’d blocked that horror out, until the Nugget’s big 0-3 started to draw near. As an incident over the shade of an ice pop blew into a throw-down last week leaving a sobbing Nugget clutching me, signing Why is Baba so mad? Why did Baba make me cry? and the Turk screaming Turkish profanity followed by “What the hell is wrong with him?” It grew apparent, 3 was coming to take my Nugget as well. But being the Positive Pollyanna that I am, I tried to lay out my rational as to why three would be better with Nugget than with Number 1 for the Turk. (While I took the brunt of the horror on round one, he was not left unharmed and we both suffer from Post Traumatic Turkish Toddler issues. And since Nugget is a major Baba’s boy, it’s not looking good for the Turk on this round.)

“Maybe since he’s got a few delays, the whole three thing will be delayed too and   we’ll get it in spurts instead of all at once.”

“No. You are crazy. He is crazy. This will be very bad.”

“Maybe since he had such a rough year and he’s made such huge strides this year   will be a breeze. It’s karma.”

“No. This will be bad. I see if I can travel more for work this year.”

“Maybe since we’re really old now, it won’t bother us as much.”

“No. Now I just get piss faster.”

The signs started to show around 2.5 but it was too soon so I wrote it off. But as the sass via sign started, I worried. When he began to sigh, “Uggggg Ooooooooom! (Aw Mom!)” while rolling his eyes and storming off, I saw the tidal wave beginning to form. Then, this week when he handed me a poop-filled diaper, leaving a trail of poop on my freshly (like mere hours earlier freshly) cleaned, white carpet, and began to explain that he was uncomfortable and needed a shower “Ow!” (Now!), it was clear there would be no delays. 3 had arrived like a freight train and no one would be spared.

But as I cuddled a chubby little birthday boy who somehow appeared in my bed in the middle of the night, I got a little weepy thinking about how much has changed for him in the past year and how much he’s accomplished. Last summer he was lethargic and miserable with a kidney that just wasn’t working and now he’s an unstoppable ball of fire. Last summer he was so angry because he couldn’t hear or communicate and now he gladly wears his hearing aid and communicates in both ASL and spoken English (though he’s still only using vowels, he knows what he’s saying even if the rest of us don’t.) Last summer we didn’t really understand all that was going on with Nugget or even what BOR Syndrome was and now we’re a veritable font of knowledge on the subject and have made great strides at getting him on track.

So even though 3 pretty much sucks and we’ll be in for quite a year, I gladly take it. Especially if it means that my baby is finally catching up. (Full disclosure: I could not have chosen a better time to go back to work.) Good luck Developmental Preschool. You’re going to need it with this one!

 

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.

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.

 

I’d Like To Call a Do-Over

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 3^rd 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

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.

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.

 

 

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.”