T1 D: We’re the Parents

Composed on my cell phone at 3:26 a.m. Today is the last day of National Diabetes Awareness Month.

We’re the parents. We’re tired.

Tired of chasing toddlers around the house with insulin shots in hand.

Tired of pleading with, worrying over, and screaming at our irresponsible teenagers who just want to be “normal” kids.

Tired of our child’s anguish over it – why did this happen to me? It’s not fair. I just want to eat when I want. I don’t want to test. I hate diabetes. I hate my life.

We’re tired of not sleeping. Tired of the constant worry that the outside world seldom sees.

Many of us are on medication. Some of us self-medicate with alcohol, a little too much.

We’re tired. Tired of having outsiders question us when we’re pushing our kid to finish all their food, because they don’t know or understand that she’s just bolused six units of insulin and will have a serious low if she doesn’t.

Tired of explaining Type 1 diabetes to the uninitiated. Tired of sharing information, and trying to make the world see – at least one month out of every year – how serious this disease is, how deadly, and how it is NOT Type 2 diabetes like your grandma has.

Tired of insensitive people sharing how little they understand by comparing our child’s diabetes to that of a cat they once had, or worse – telling us about a friend’s husband who died when his blood sugar dropped to 17 and there was no one to save him. In front of our child.

We’re tired. Tired of explaining that a blood sugar under 60 is a serious medical emergency that cannot be ignored, postponed, or treated lightly.

Tired of lying awake in the middle of the night, our child’s blood sugars well over 300, worried about ketones and not being able to forget the image we saw earlier of a beautiful young girl who died because of a kink in her insulin pump line.

Tired of watching the cost of life support rise to ridiculous prices, and scared to death that one day our child might not be able to afford their insulin. Tired of wondering why there’s a copay for this life-sustaining medicine, but not for the test strips to monitor blood sugars. Tired of fighting with insurance companies, who don’t work for us, over all the supplies we need to keep our child alive.

Tired of worrying about every birthday party, every field trip, every excursion our child takes, away from our ever-watchful eyes.  Worried that they’re remembering to check their blood sugars before turning the key in the ignition.

Tired of worrying over the quarterly finger-stick report card we call an A1c, that tells us how well we’re managing the rollercoaster. Worrying over annual blood tests – which remind us of other worries like high cholesterol and heart disease, kidney disease, and the higher risk of secondary disease that walk hand-in-hand with diabetes, like Celiac’s and thyroid disease. Worrying over every annual eye exam, and praying there are no changes.

We’re tired of worrying and thinking about how our child is going to do this on their own someday. How we’re going to sleep at night when they’re no longer living with us.

We’re tired of hearing of new diagnoses. We’re tired of hearing of one more child who died from undiagnosed Type 1 diabetes, because their parents didn’t know the signs.

We’re tired of all the fundraising, and the promises of the ever-elusive Cure. Sometimes, we’re tired of hoping. Sometimes, we’re tired of praying.

We’re the parents, and we’re tired.

 

 

 

 

 

Advertisements

The Chronicles: Thanksgiving Edition

The desire to write again is creeping back slowly. I was, as so many were, so deeply affected by the outcome of the election. Many people are talking about it, still talking about it, posting about it …. and I don’t want to. I have no desire to write about it. But what worried me more was that I had no desire to write, period.

So I returned to my writing roots, to my journals where I write only for me. The daily morning ritual of coffee and pen to paper has helped. The impending holidays and several neck and back adjustments have done just enough to turn my frown upside down. And so, without further ado, the previous week’s shenanigans…

About a week before Thanksgiving, Veruca begged me to listen to the Holly channel while we were driving. Please please please?? Fine, I said. It was the Twelve Days of Christmas. At least we could sing along. However, this version, by Straight No Chaser, is like following somebody to a place you’ve never been and they’re driving so fast you end up losing them. These dudes skipped numbers, turned back to those missed halfway through the song, dipped into Dreidel Dreidel Dreidel, and then slipped into Toto’s Africa, Christmas-style. Eight maids-a-milking, and they’re milking just for me…  And I don’t always have a dirty mind but when I do, it’s not in the car with my 11-year-old singing the Twelve Days of Christmas.

And while we’re on the subject of feeling uncomfortable, I recently heard a fun story about a family that sits in a circle after Thanksgiving dinner watching the Sound of Music and rubbing each other’s feet. The whole damn family! In a circle. Touching each other’s feet. For 3 hours. Imagine that! Because I can’t. But if you can, and you like it, that’s great. There’s no judgement here.

So Thanksgiving. The night before, Todd and I drove the kids up to their dad’s and – against my better judgement – decided to have an impromptu date night at the restaurant. The night before Thanksgiving. This is never a good idea, no matter how much food and wine my mother plies me with. I ended up behind the bar – surprise! And date night turned into tipsy-bartender night with hubby rubbing elbows with some of our favorite guests. And then, while totally unnecessary, the staff tipped me out for “saving” them. How many people who aren’t professional escorts can say Date Night turned a profit?

We hosted Thanksgiving at home, as we always do, with a total of 15 people (and four dogs) who came to nosh and drink and watch The Secret Life of Pets before passing out. I’m happy to report it was a peaceful bi-partisan gathering with no talk of all the president-elect’s men. Well there was the whisper of one, which I shut down like a boss by threatening to leave my own house and run away to an unnamed neighbor’s, leaving the targets looking like two deer trapped in the headlights. Nonetheless, I would like to apologize to all of my mothers, who may not have been guilty at all.

It was a lovely day… no smoking bird and no fistfights (really, we’re not that kind of family, but wouldn’t it be fun to say so?), the only casualties a crystal champagne glass and our downstairs toilet, which sustained a mysterious crack in its tank and leaked a rather large puddle of water overnight. Oh – and in keeping with the spirit of lost items at every event, a pair of ear buds were found in the driveway the next morning.

Oliver was extremely pissed to have to share his home with visiting dogs, one of whom spent the night guarding the space between the kitchen and the rec room where his litter box lives, and having the area around his litter box flooded sent him over the edge and apparently onto one of our bathroom rugs, which sent Todd over the edge. Oliver has been banned from the master bedroom indefinitely, and there’s nothing I can say to save him until the smoke clears.

I don’t shop on Black Friday because I’m not suicidal, so I don’t have any good shopping stories yet. But I learned some other things. I learned that people who get really drunk and loud and obnoxious still exist. I learned that some girls really do like older men, though in some cases I can’t for the life of me figure out why. To quote a friend, there’s not enough money in the world to [put up with that]. The latter part is censored because I just can’t write it here without feeling dirty, and believe me I feel dirty enough when two people are hurling accusations of infidelity in front of me and I’m desperately wishing I’d worn my invisibility cloak. I must say I felt terribly sorry for the Uber driver who spent what must have been a very entertaining, albeit uncomfortable, hour locked in a car with these two.

Yet truly, I felt sorry for the two of them. Imagine being in an on-again, off-again relationship for years, punctuated by fancy dinners and expensive wine (if it doesn’t get spilled all over the table), mistrust and hushed yet very public arguments, hopefully some decent Viagra-assisted sex, and constantly having to apologize for your date’s behavior. Where is the joy in that? It’s a very sad, sad situation, and one I would never envy. I’d rather spend the rest of my life alone with twenty-seven cats, than have even one night of that kind of drama.

It’s a gift, to get reminders now and then of just how good I have it.  An old family-drama-of-marriages-past tried its best to suck me  in recently, and I’m relieved and proud to say that I slammed the door on that circus.

I am so blessed to have the love of a good man – who may be old to a 20-year-old but is perfect for this 47-year-old. Life is good.

 

 

 

Throwback Thursday: Reunion

I drove to our meeting place, my heart in my throat and my stomach somersaulting. While we wanted this first time to be private, circumstances made that virtually impossible. I imagined this as some epic reunion, and could hardly think of seeing him, after so long, in some crowded restaurant.

I pulled into the lot, my palms sweaty and trembling on the wheel. We had spoken frequently over several weeks, his voice over the air waves like an old familiar song, but until this very moment our eyes hadn’t met in over twenty years. All I’d had were pictures on a computer screen, and an old prom photo that by some miracle had escaped a jealousy-driven purge many years ago.

I saw his silhouette inside his truck, and knew there was no turning back. My heart was pounding in my chest. He stepped out of his truck as I opened my car door, and I was soon standing by my car feeling suddenly shy and conspicuous. We walked a cavernous short distance toward each other and I did what I always do when I’m breathtakingly nervous – smile stupidly like the kid caught with his hand in the cookie jar.

And then we were face to face. This boy I’d loved beyond all rational reason 25 years ago, the first real love I had, the unforgotten one who was indelibly imprinted on me … was standing right in front of me, flesh and bone. Same soft dark hair, shorter today. Same frame and square shoulders. Same dark eyes that see inside of me, reading all of my secrets.

And he did what any guy in his right mind would do under these extraordinary circumstances. He hugged me. I felt his arms encircle me and tried not to melt into them. I tried to remember that I was a 41-year-old woman who was mature and put together and … then I hugged him back. I couldn’t breathe. Because, Todd.

I hadn’t spoken that name out loud in forever. Hadn’t dared to think much more beyond a casual reminiscence. We stood back, looking at each other. So? So?

And suddenly there were no words. We sat down together, and suddenly the walls came down again, like they had on the phone, and we were talking about everything and nothing.

At some point he picked up my hand and I looked down, surprised by the familiarity – by the sight of his hands. You know how not all hands you will look at like they are yours? We were older now, but his hands hadn’t changed. And when I felt his hand around mine, it was a memory come to life again. In that moment, nothing had ever felt so right.

A Series of Unfortunate Events

giphy-6

It’s been a pretty shitty week. Again. It all started with that damn monthly bloody mess that ruined my mojo and made me all blubbery on the eve of my son’s 16th birthday. Yeah, I know – too much information. Well buckle up, cause there’s more.

It would be lazy to just say I’ve been pissed off. It all started the weekend of the double shift. One of our servers quit without notice, and we’re already short-staffed. But here’s the thing – I don’t know if I’m more pissed at her, or at myself. I was driving home the last night I worked with her and was thinking about the shit she’s going through, and really feeling for her, you know? So I’m pissed at myself for caring, and not the first time being burned by someone in the workplace. Nevertheless, now we are struggling to serve people once again on a skeleton staff.

Someone who caused someone I love a lot a trouble decided it was okay to walk back into their life recently. Here’s a piece of advice for all you forgiveness seekers: if you really want forgiveness, go knock on their door in PRIVACY. Don’t ambush them in a public place that they can’t escape from or throw you out of, without them looking like the asshole. I’m so angry and disappointed by this series of events, and apparently I didn’t make myself clear enough the first time.

My daughter’s school bus “sex-ed teacher” was reprimanded and that same afternoon got back on the bus, sat in his regular seat, and proceeded to interrogate everybody in the vicinity as to who “told on” him. She was so upset when she got off the bus she said her legs were shaking. SO. One email copied to everybody on the planet, and… Newsflash: Dick and his boner are now sitting in the front of the bus, right behind the bus driver. And Veruca is back on the bus and all is right with the world again.

Meanwhile, I decided to write birthday wishes all over my car windows for Opac – giggling madly to myself when I picked him up from practice. I was so excited to do something fun and silly for him, and guess what? He was raging pissed that I would “disrespect” him, and I don’t love him or even know him if I could do something like that. I know – you’re wondering if you’re missing something now, right? Yeah – so was I. It was ugly.

The political climate is a hot mess and I am maniacally oscillating between profound depression, debilitating anxiety, and downright anger. The country is so divided and people so mean, I’m holding my breath until this whole thing is over, and yet I’m scared that it will never be over. Two days ago someone (who is now no longer a friend) crossed a line and I’m embarrassed to admit I let them slip by a while back when they claimed the Holocaust was a fabrication. Someone commented today on a different thread, that “how it got this far is a testament to the collective intelligence of our country,” and they are right.

For the most part I’ve been avoiding commenting on heated threads, because it makes me upset and the troll who started it just goes on with their day without another thought. Except yesterday… some woman started regurgitating senseless rhetoric and pointing her finger at the Crooked One. And all of a sudden – to quote Eddie Murphy – I started laughing my mother-fuckin ass off.

The thread is still going strong, with no signs of abating. And like an addict I keep checking back in to see what else she comes up with. I hate to admit I admire her conviction, however deranged it might be. If I don’t laugh, I’ll cry. I’m just one glass away from public drunkenness. And speaking of public drunkenness, good-lager-gone-bad Yuengling recently endorsed the Orange One. What is the world coming to?

I had yet more disappointment this week as plans for an art show I was organizing fell through. I didn’t get the response I was hoping for and, while I could easily blame so many factors on others, I own the fact that I should have started organizing earlier this year. In some ways I’m relieved – my nerves were frayed at the thought of it all – but the embarrassment at having to pull the show isn’t going to wear off for a while, I think.

It’s just another blow to an already fragile ego – one that has been behaving badly this whole year and embarrassing itself in public places. Lucky for me, I still have my family… and my husband who not only gets me, but still loves me in spite of myself.

**Disclaimer: I don’t use the upgraded service; therefore, you will see ads at the bottom of my posts (ads I don’t see because I’m not you). As it has come to my attention that certain ads may not align with my world views – I am compelled to add the following statement until further notice.

I ABSOLUTELY DO NOT SUPPORT DONALD TRUMP. NOT YESTERDAY, NOT TODAY, NOT – EVER.

Diabetes, and Emails, and Mice

I’m working though my emails this morning and there was one from Kohl’s. It’s their “best Black Friday deals early” email. Um, WHAT? We barely have one foot in the door of November. My God, I haven’t even begun to think about Thanksgiving.

There were also several “store” emails taunting with coupons to save money by spending money, daily recipes I will never cook, endless Pinterest pins I have to see, and a new bill from waste industries. Which I find ironic seeing as this week they didn’t even have to leave the comfort of their truck because Opac forgot to take the trash cans out. Oh, and another email with 5 Trending Ideas for the Living Room and Where to Hide the Litter Box in the subject line. This sounds like one I can’t afford to miss. Hopefully the trend in Living Rooms is not where we hide the litter box.

Speaking of litter boxes, I was watching American Horror Story last night, alone, when I suddenly became aware of some shuffling noises coming from my kitchen. Both kids were already in bed. Then the dog stood up and stared into the kitchen. A moment later, Oliver came barreling into the living room chasing a small gray thing that appeared to be fast-limping in circles until it found the entertainment center and scuttled under it.

Long story short, we live in the country and the nights are growing colder. This is the second night this week that Oliver has had a live toy to play with. The first night, he and his furry buddy woke Veruca – and then me – at 4 o’clock in the morning. She and I followed them in horrified amusement until the mouse disappeared into one of our guest rooms in the rec room. I figured it’d take a miracle for them to end up back in Veruca’s room, so we went back to bed. By morning, Oliver was playing with the body just inside the front door.

Last night Todd came home from working late and found me sitting on top of the back of the couch, simultaneously watching AHS and the cat, and said – what are you doing? I stood up and walked across the couch to greet him, and pointed at the cat. Fifteen minutes later Oliver chased this thing down the stairs, I opened the front door, and Todd swooshed it outside with a dustpan. It is an unnerving and slightly hilarious thing to watch your cat capture a mouse in his mouth and then let it go several times, and not know which way the mouse is going to run or if it’s going to end up in your bed before morning.

So, back to that first night… where I was up at midnight and 3 a.m. for blood sugar checks. Veruca went to bed high (high blood sugar, not drug-induced high) and after an insulin pump site change, at 9:30. She continued to run high all night – 452 and 343 respectively – probably due to the pizza and birthday cake we’d had earlier for Opac’s birthday celebration.

My alarm was set for 3 and I got up to find her stable again at 162. Less than an hour later I was awakened to shuffling noises and then a soft knocking at my door – Veruca standing wide-eyed in the hallway – and for a brief moment I panicked, thinking she might’ve gone very low after correcting those high numbers.

November is Diabetes Awareness Month, and I commit myself every year to advocacy and awareness for Type 1 diabetes – the chronic illness my daughter has lived with for 9 and half years.

The JDRF has a new “thing” on their site where one can calculate their diabetes footprint. My daughter was diagnosed in June of 2007 at the age of 2. She began with a terrible, old-school regimen of insulin shots that turned her blood sugars into a ride so wild they made the Kingda Ka look like It’s A Small World.

Her calculated diabetes footprint looks like this:

3,425 Days living with T1 Diabetes

1,952 Hours of sleep lost (this is waaaaay off base)

20,550 Finger Pricks (also way off base)

964 Insulin Pump site changes (off base)

There were far too many nights I had maybe 3 hours of sleep total, after constant monitoring and vigilance. Night time is the scariest time for T1s – when many can suffer low blood sugars that can go unchecked if they don’t wake up to test. Low blood sugars, if left untreated, can lead to unconsciousness, and even death.

We used to test her every two hours. Every. Two. Hours. Every day. That’s a minimum of 12 finger sticks per day. Based on that, and given that we’ve backed off of so frequent checking – her total number of finger pricks to date is more like 30,000.

She’s had T1 for 9 years and 5 months. She’s worn an insulin pump for just over 8 years. The site gets changed every two days. Except when there’s a “bad” site, or we have two consecutive blood sugars over 240. Then it gets changed again. There were many, many times it was changed nearly every day, and on a rare occasion, more than once in a day. Therefore, I’d recalculate the above number to more like 1500.

Nine years in, and we know when it’s a site issue, or just some other anomaly. We know that highs happen, and that lows happen, and that that’s just how diabetes rolls.

I know that to outsiders we make it look easy. We don’t piss and whine about how horrible Type 1 diabetes is. After 9 years, it is our way of life… and it is all my daughter knows. But there is so much more to this disease. So much more, and it’s scary and unfair and there are children dying from it. Just one child dying from undiagnosed diabetes should be too many, and last year there were at least 5 that I can count.

 **Disclaimer: I don’t use the upgraded service; therefore, you will see ads at the bottom of my posts (ads I don’t see because I’m not you). As it has come to my attention that certain ads may not align with my world views – I am compelled to add the following statement until further notice.

I ABSOLUTELY DO NOT SUPPORT DONALD TRUMP. NOT YESTERDAY, NOT TODAY, NOT – EVER.