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.

Of Chipped Teeth and Chicken Bones…

“Be honest, is it bad?” I gingerly grinned at the Turk, exposing my front tooth.

He bent down, tilted his head left and right. “It is not that bad. I mean, it is not good but I think no one notice if you don’t tell.”

I ducked into the 1^st floor powder room, the one with the fabulous purple walls and paintings of cats in trucker hats, and immediately began practicing my new closed-mouth smile. I looked like I was seven years-old but it was either this new no-teeth-revealed grin or the possibility of death. Pandemic choices suck.

The route I’d taken to this moment was nothing short of a tour in stupidity led by no one but me. For the majority of my life I’ve danced over the line between vegetarian and mild omnivore on the reg. I’ll be a solid veg-head for years until one day mama needs meat. The problem is, when I come off the veg wagon, I go hard and scarf down meat like a T-Rex on a bender. No surprise, 2020 pushed me over the edge and suddenly, Mama’s raging on a meat bender. 

So, when my darling son left his plate of chicken wings unattended last Friday, Mama-Rex couldn’t help but snag one. But honestly, who can say no the hot, juicy, greasy joy of a Buffalo wing? Not this chunky gal, that’s for sure. As I shoved that wing into my salivating mouth and bit down I was ready for the burst of sweet, spicy pleasure to take over. (Is this why people do drugs? Oh lord, am I a buffalo wing junkie?) But instead of joy my body immediately filled with horror. I felt the crack. Then the chip. Then that terrifying feeling that you’ve just bit down on a rock. I rushed to my purple powder room to inspect the damage only to find a solid chip out of my front tooth. My fat ass chipped a damn tooth trying to steal a chicken wing. The irony was not lost on me at all.

Thoughts of Mama Cass flooded my psyche. (If you don’t know Mama Cass you’re a child. Goog her. She’s a legend.) Perhaps it’s an urban legend that she died choking on a chicken bone but my maternal grandmother Dink always warned, “be careful eating that chicken, you don’t want to end up like Mama Cass.”  Ok, so Mama Cass ended up dead and I only had a chipped chomper but I felt connected to that woman 100%.

“What am I going to do?” I whined to the Turk moments after the incident.

“I guess you have to go to dentist.”

“Obvi, but what about the ‘Rona?” 

“I guess we trust they take care.” He was very unconvincing. Partially because he isn’t really a fan our dentist and partially because he was standing on a ladder in the bathroom trying to rewire the exhaust fan simultaneously. My chipped tooth was of little interest to him. Thankfully his electrical work prevented him from asking for a blow by blow of the incident. I had no need to confess to my husband how I had really committed this atrocity.

Hesitant, I left an after-hours message with the dentist and prepared myself for a Monday appointment. But by Sunday I wasn’t feeling it. Was it chipped? Yes. Did it look bad? Oh, hells yeah. But I’d had a root canal on the same tooth years ago after taking a Thomas the Tank Engine to the front tooth by a post-surgical Nugget so there was no health danger. Was I ready to sit in an office, mouth open, sucking in germs during a pandemic with an airborne virus just to get it fixed? Maybe not. Perhaps I would just never open my mouth again. Practical right? At least I might finally lose that quarantine fifteen.

Sunday night I had fitful sleep. In my dreams Steve Martin was reprising his role of the sadistic dentist from Little Shop of Horrors above me while Covid germs permeated the air and catapulted themselves into my gaping mouth. I’d wake from one nightmare, walk around to brush it off, then return to pick up with another. I died at least three times that night and was near death more than I could count. By the time I woke up, I was convinced that this chipped tooth was going to be my death sentence. Was I really prepared to leave my beautiful babies to suffer through a future with The Turk? He can barely get them dinner when I leave it in the Crock-Pot.

As we sipped our coffee, I dropped the bomb. “I can’t go. If I go to the dentist I will die.”

“I agree.” He took a long sip from his little Yoda mug. That’s the thing about marriage, while being opposites is great, it’s always good to have a spouse that shares your same level of crazy.  

He put Yoda back on the counter, “I think it ok you can wait. We are red zone. It is very dangerous to go now. Plus, you see nobody but us and if you go out, you wear mask. No one can see.”

My Turk made a very good point. This whole mask thing could be my vanity’s savior. While maskholes argue about fabric face coverings impeding their personal freedoms, I’ve always been all in because: 1: I believe in science. 2. I believe in protecting society and 3. Most importantly, those masks hide a double chin like nobody’s business, and I will take that all day long. Now, as an added bonus that mask is going to hide my snaggle tooth until this virus subsides enough for me to get to the dentist. 

After some practice in the purple powder room mirror, I’ve resigned myself to my new look. I’m sure it would be considered nothing in some places (I’m lookin’ at you Kentucky, ) just know that the minute we are no longer in a danger zone, my ass is in that dentist chair.

2020, the year that just keeps giving.

Which is Better…This…or…This?

“Can you read the last two lines?” The doctor pointed to the card I was holding with his shiney new pointer to insure social distancing.

“Sure.” I was confident. Was it blurry? Yes, but I was certain I could get through those tiny letters with ease. “R – F – P – O – C – Z”

“Good job. Now can you read the bottom two lines?”

“I just did.”

The twelve-year-old optometrist shook his head slightly in a way that made it clear he was used to dealing with those in denial. “No, I’m sorry, but there are two more lines of letters below that one.”

My mouth fell open and my now failing eyes widened. “No way! Seriously?” I wiggled the card closer, then farther as I widened my eyes to the point they were close to bugging out of my head. (Let the record state, I was actually wearing my glasses.) Finally, I performed my recently adopted signature move: bowing my head to start at the top of my glasses then slowly tilting upwards and staring down in search of a sweet spot that would let me see something…anything…with a bit of clarity. That’s when I saw it. What I thought were just lines on the little card were actually letters but there was no chance in hell I was making out a single character. “I’ll be damned.”

Doogie Houser nodded knowingly. “Looks like it’s time to refresh that prescription.”

Obvi Doogie. Why else would I be sitting in an optometrist’s chair, fogging up my glasses in the midst of a surging pandemic?  If I could see the dust on my mantle from across the room, would I be in your office right now? No. I’d be home avoiding dusting. Since the beginning of this cootie-infused hell called 2020, I’d noticed my old bifocals were beginning to fail me. That’s when I patented my afore-mentioned head nod in search of a sweet spot in my progressives. As the year droned on I found myself upping the font size on my e-books as well as using old-lady mode on my laptop. Things were getting ugly. Faced with the new 2020 mask-glasses-perimenopause combo which results in frequent fogging, I found myself often trying to go sans spectacles. After I walked into a pumpkin display at the food store, I realized those days are over and Mama needed new specs.

I’ve worn glasses since 7^th grade but I’ve usually been able to survive without them in an emergency (or at least when they’re fogged over.)  But as 50 stares at me from the horizon, those days are gone. I got my first set of bifocals at 41 but I also had a newborn, so it wasn’t really a big whoop.  Upon reading my new prescription last week, I found I’d gone from a solidly mid-forties prescription of a +1.5 in my bifocals to a geriatric-leaning +2.0 this time around and the whoop was bigger, but Mama’s gotta see. A few years ago, another optometrist suggested I try the bifocal version of contacts where you wear two different lenses – one eye for distance and one for close-up. When I wasn’t even capable of finding the door to the exam room after putting them in, that idea died. Fortunately, the advent of on-line glasses purchasing has made it easy to have an array of funky and fabulous frames at my disposal to temper the pain. What a time to be blind! 

My husband, the Turk, however, is new to this game and he’s not dealing well with it. Since I was booking myself an appointment, I went ahead and booked him one too. He swore that was futile, but I’d seen him doing the wide-eyed, arm stretch thing to read fine print lately. He’s also blind as a bat at night and all of us white knuckle all the way home when he’s driving in the dark. However, he refuses to admit he’s night-blind. He has worn glasses for computer work for a few years but essentially, he’s a four-eyed noob.

His appointment was after mine, providing just enough time for us to hand-off kid care duties. He returned home just as I was filling two different carts on two different sites with frames I’d tried on virtually right on my sofa. “Well?” I prompted.

He handed me his new prescription. “I am fine. He say I just need little tweak.”

Glancing over his prescription I nearly exploded. “Did he say anything about the kind of glasses you need?”

“I don’t know. He talk a lot so I stop listening. What is he, 14? Why he look like kid?”

I stifled a giggle. “Did he mention the word bifocal?”

The Turk snapped his head at me. “NO! Why you say that word? I am not old.”  The Turk loves to remind me that I am older than him. He constantly points out that he is a child to my old age. He is 1 year and 9 months younger but to hear him, it sounds more like I’m Mrs. Robinson and he’s 19. 

A Cheshire cat grin spread across my face. These are the moments for which I live. I pointed to the glaring +2.0 on his prescription. “Looky, looky grandpa. There it is. That means you got bifocals.”

“NO!” He yelled, grabbing the paper from me then pulling it close, then far, then close again in an attempt to focus on the tiny print. “How this happen?”

As I went on a diatribe explaining the aging process to my clueless husband, I felt validated. Sure, I was older and had old lady eyes but now so did he. He didn’t even get to wean into the whole bifocals thing like I did, nor did he want to sooth the pain of aging with some purple frames or rhinestoned cat’-eyes. (Ugh. Straight men.)

BOTH of our new bifocals should be arriving next week so New Englanders, rest assured, the roads will be safe from the Turk soon. Personally, I look forward to returning to a life in 12 font and maybe even recognizing my children when they are more than 6 feet away. I can’t wait to see what I’ve been missing!

Squishy Warrior Down

The email came in around mid-December, “Join the Winter Warrior Challenge! Sign-up Today!!!” As a squishy gal of the advanced forties with bad knees, asthma and a penchant for wine and chocolate, there is nothing in my being that screams “warrior.” At the very least I might scream, “negation team,” but definitely not “warrior.”  Still, I read on. The challenge was for each school divisions to form teams of staff and students. These teams would compete for the most miles covered by walking or running in the month of January. Solid idea right? It would fit well with my standard, be healthy, eat better, become less fat new years resolutions I make every year. Then, I read further.

“All miles must be completed outside, every day. Students can miss a day and they remain on the team but adults who miss a day of outdoor walking, running or biking are dropped from the competition and their miles are no longer add to the team total.” Hubba whaaaaaa? Outside? In January? In New England? Bitch please.

Sure I was born on the icy tundra of Iowa and I was forced to do farm chores in the sub-zero temperatures until I was spawning snot-sickles from my nose, but that is exactly why I left. (And while New England is cold, it doesn’t hold a candle to the cold of Iowa.) My ass has now developed a fine appreciation for central heating and heated steering wheels. Ain’t no way Mama’s goin’ back to the snot-sickle days.

That whole “outside” thing was where I decided this was the most ridiculous challenge of all time. Who would do this? Why would anyone do this? Oh, and what was the grand prize for braving frostbite for 31 days in a row? Amazon gift card? No. Cash money? No. Pizza party? Hells no. The grand prize for this torture was…bragging rights, freakin’ bragging rights. Let me say it again, bitch please.

And then it happened, “Hey guys, I think we should do the Winter Warrior Challenge. We can make a middle school special ed team.” My perky blonde co-worker with two working knees and not a squishy part on her body made the proclamation as I stuffed a piece of post-lunch Godiva into my pie-hole. I tried to take a hard pass but she kept coming back. “We can all do it together and get the kids involved too. It will keep us on track and make us accountable. Great way to start the new year right?” Did I mention how not squishy she is? If you’re not squishy do you really need to be kept on track and accountable? No. But once she’d managed to muster a growing team, pride would not allow me to be the squishy one in the corner, avoiding exercise and spending lunch with Godiva instead.

*Massive sigh* “Fine. I’m in.” I regretted those guilt-driven words the moment they passed my lips but there was no going back. I was about to be a squishy warrior.

Day one, 1/1/20 – *Ding* “Did you get your mile in girls?” the text read. Accountability sucks. But I’d treated myself with some Sherpa-lined sweatpants so I had that to motivate me. (PS – no size 14 butt needs the extra 2” on all sides provided by Sherpa-lined pants but damn, they’re warm.) Day one, done.

By day three, against my intentions, I was actually enjoying my time strolling through the neighborhood cemetery, amid the deceased founding fathers (It makes me feel alive.) listening to my true crime podcasts and waiting for my watch to give the 1-mile buzz and end my task. By the second week I was all in. I walked the track at school, braving sub-zero temperatures at lunchtime and if I couldn’t get my mile in during lunch I would hike up and down my driveway (The only advantage to a massive driveway.) as I waited for Nugget’s bus and on the weekends. Around the 18^th  the thrill was gone but I pressed on. I’d come this far and I only had 12 more days to completion and damn it, I was a sub-zero soldier. I was going to see this challenge through.

Day 22: It was Arctic cold and I had no desire to do anything outside, least of all walk for a  stupid mile, but I had only 9 walks left once I finished this one. Even though I began as the most reluctant warrior on the roster, I was adding up the miles at a nice steady pace.  I donned my Sherpa pants and parka and headed out. Instantly, my tears froze and my mascara solidified. As I walked I hurdled patches of ice and remnants of the weekend snow but I pressed on. Until it happened. It was like a scene from Rambo when he gets hit, stumbles but doesn’t quite go down. I couldn’t breathe. I tried to push through like Rambo in a parka. I slowed my pace. I was going to finish the last .10 of a mile no matter what was happening inside my chest. The single digit temperature threw me into an asthma flare and mama needed some albuterol STAT. Crawling up the driveway, I hit the mile mark and rushed inside.

I spent the rest of the day sucking on my inhaler like I was tokin’ on a pipe. When that didn’t work I moved to the nebulizer. For the next two days I was a nice shade of blue as I struggled to get my lungs working again. I had more steroids coursing through me than the WWE in the ‘80s.

Day 23: It was over Johnny.  The squishy warrior had fallen. Only 8 miles left and no matter how much I wanted to, my lungs wouldn’t let me. And after a harsh lecture from my doctor, I accepted defeat. But at least the 22-plus miles I banged out would have helped me shed a few pounds, right? No. I gained three and spent $150 in asthma medicine and $200 in co-pays. Suck it warrior challenge. Next year when that perky blonde mentions the words Winter Warrior again, I will simply slink back to the corner with Godiva and accept my reality. Squishy for life.

 

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.

 

Misfortune Is Simply Fodder For Funny

We’ve all met that person who has a full cannon of personal anecdotes with stories so crazy, so outlandish that you end up wiping tears from your cheeks while you wonder to yourself, “This can’t be true, right?” Well, I’m here to tell you these stories are true. (Unless the storyteller is in a bar, then these might be big ol’ booze lies.)

I’ve recently come to the conclusion that there are people, like myself, whose lives are so ridiculous that our life’s purpose is to provide entertainment to the masses by sharing our tales. I’m also certain the universe crossed the paths of the Turk and I all those years ago for no other reason than to make us the life of every party we attend by recounting our daily foibles and if last week is any indicator, there is no hope of things changing.

It began on Sunday. I was working in the yard when I heard the vacuum. Since I’d vacuumed an hour earlier, this Nancy Drew needed to investigate. As I called to him from the garage, he began to stammer his now frequent catch phrase. “Don’t worry, I fix it.”

No woman, anywhere, ever wants to hear the phrase “Don’t worry, I fix it.” Ever.

Inside the house, I found a dusting of drywall with bits of plaster coating half of the living room and interspersed within the furniture were huge chunks of insulation. Reflexively I looked up to the vaulted ceiling and released a large, involuntary, “Ohhhhhh nooooo.”

The Turk stood at the top of the stairs, right below the giant hole in my living room ceiling. Sheepishly he added, “I fix it. Don’t worry. Next week I take vacation and I do it then. Don’t worry.”

He’d gone into the attic to check on a leak and prepare to install a ceiling fan (Another project he felt capable of executing after watching a couple YouTube videos. God help us.)

“You stepped off the beams didn’t you?” I asked.

“How you know?”

“Because in American houses there is nothing between the beams.”

He looked down at me with utter confusion. “How I know that? In Turkey houses are concrete.”

Touche.

“At least I didn’t fall through there,” he added pointing to a full set of six other dent/not quite holes, going across the ceiling.

—-

That was Sunday. Monday was uneventful followed by a Tuesday that started the same but escalated quickly to hot mess status.

Thanks to summer storms, we dealt with a long day of power outages so though I’m usually a frugal gal, (cheap ass and tight wad have also been used to describe me but I prefer frugal.) I declared, “We’re going out for dinner!”

As we enjoyed a dinner prepared by someone other than myself and served in an air conditioned establishment, I cut a deal with the Turk – “Help Number 1 get ready for football tryouts with a little catch or fold the 3 loads of laundry I busted out between power outages.” The choice might seem obvious but in our house, football is my jam so it could go either way. (For a recap of our football journey, check out this previous entry.)

“I take football.” And those were his famous last words.

Minutes later a small voice outside yelled, “Um, Mom…Mom…Mom!!!!” immediately followed by a loud Nugget voice yelling, “Mom! Baba is boken.”

From the upstairs window I could see the Turk writhing on the ground and spewing Turkish profanity. His thrashing body was mere inches from a hole I’d asked him to fill for the past two years (Isn’t it always?) so I bit my tongue and yelled from the window, “Are you broken?”

“Evet.” (‘Yes’ in Turkish. We go bilingual for clarity in states of emergency.)

“Do you need help?” I called; wanting to make sure it was real and not soccer field drama being employed to get out of playing catch, before I abandoned my laundry pile.

He switched back to English, “I think I need go hospital.”

After some Turkish profanity on my part, and an epic level of tongue-biting around the whole hole situation, I loaded up one broken Turk and two half-breed Turks and headed to the ER where I nervously filled the silence with statements like, “You’ve only been an American for 4 years, you’re not American enough for football yet.” And “Next time I bet you choose laundry.” (FYI – Unless you’re open to sarcasm, nervous joking and huge bouts of impatience, I’m the last person you want by your side in an Emergency Room.)

…3 hours later we had a diagnosis of a fractured ankle along with a pair of crutches, orders to put no weight on it until he went to the orthopedist and a prescription for pills that made him so goofy I thought he might have to sleep it off in the car.

Thankfully, by the end of the week the orthopedist put him on one crutch and a walking boot. It was a damn good thing too because when it comes to caregiving I am nothing short of Nurse Ratchett and between one immobile Turk and two incredibly needy ½ Turks, a few more days might have given me a ticket to a vacation at Betty Ford Rehab.

So that was last week, and while most of our weeks don’t usually result in a maiming, the level of drama is constant and this summer has been no different.

The other day Number 1 Son said, “Mom, why do you always laugh when bad things happen? It’s a little psycho.”

I replied, “Well son, yes I am a little psycho, but years ago I learned that with this ridiculous life, if I didn’t laugh and entertain people with my crazy tales, I’d be dead.”

He nodded in understanding but I think that was just for the part where I admitted to being a little psycho.

There are 2 weeks left before school starts and 4 more weeks before the Turk is out of his cast. That’s a lot of room for more ridiculousness. But fret not, I’ll keep sharing my stories because clearly it’s my station in life. I’m preparing for my canonization somewhere in my 60s..St. Margaret of the Turks…what do you think?

 

 

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.

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.

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.