Category Archives: Universal Coverage – In a Bad Way

Hiding from the Moon on a Very Dark Night

In case anyone needs to hear this, you are going to make mistakes as a parent. Some of them will be colossal. Just try not to let that be your standard operating procedure. Learn from my mistakes…


*

Continue reading Hiding from the Moon on a Very Dark Night

When Life Hands You Bitter Melon…

Thanksgiving was one of the roughest weeks I have had this year. Technically, it was rougher on the kid than on me. But misery rolls downhill, like Jack and Jill, leaving you with a busted head and an empty pail.

Continue reading When Life Hands You Bitter Melon…

Screwed, Blued, and…

TATTOOED!

It’s official. I now have my three tiny blue dots in place and next Monday I start my radiation treatments.* I’d like to say I was totally bad ass when they inked me, but I suspect yelling ‘Ow’ each time they poked me diminishes my street cred.

Continue reading Screwed, Blued, and…

Boob Job

I’m finally getting around to taking care of a small matter of imbalance. It seems I’ve been a bit lopsided lately. Leaning a bit to the left, if you will. Turns out there’s a reason for that! With the news the doctor gave me, I’ve decided to go ahead and have some work done.

I don’t have all the details yet, but I wanted to keep you abreast of the situation; I’m having a little corrective surgery. Before you panic and start picturing me as a centerfold model in the next AARP circular. It’s nothing that drastic. I’ve just reached an age where the fun-fun mammograms I’ve been having routinely for decades have finally paid off. They found something worth looking for.

To be honest, I’ve been waiting for something to happen for a while. Bad news comes in threes, and after the tree killed our roof two summers ago, and last year we experienced the dubious pleasures of salmonella and the criminal justice system for minor children, I had the feeling the Bad Sh*t Happens Universe wasn’t finished with me. The trilogy was yet to be completed.*

I go through a few more medicinal hoops, ring a few more lab test bells, and the doctors schedule me for surgery in a few weeks. Now all I have to do is tell everyone I know the good news.

In a manner that suits my personality…

I want to have a last hurrah before picking my son back up from camp. I send out a hurried request for a Girls’ Night Out. Friends join me at Noto’s Restaurant on the beach. It’s insanely busy and loud, but has a gorgeous view of Lake Michigan. We chat about everything–which includes someone introducing me to a term I’ve never heard of before. The friend mimes pulling an imaginary peanut M&M from her generous cleavage, saying, “Hashtag: Boob Snack,” and pretends to nosh on it. This seems like a great segue for my announcement.

I order a desert appropriate to the occasion. While handing out our choices, the helpful waiter, Chris, makes the mistake of asking, “So, what’s the big reveal?”

Bodacious Babe Drops the Bombe on the Beach!

In the spotlight, holding up my mounds of ice cream with cherries, I blurt. “I have breast cancer!”

In the appalled silence that follows, the waiter escapes, and I hurry to explain. “It’s really, really small! It’s so small that finding it was very lucky.”

It’s like a micro-tumor. Only about 5-6 millimeters. And today I learned that it is moderately slow growing and is responsive to hormone therapy. I got a grade of Stage 1-A. Or as that doctor put it,”If you have to get breast cancer, this was the best kind to get.”**

Hugs are given and I feel warm and fuzzy, especially after the waiter comes back to tell us he comped me my ice cream! A friend says we should go out more often…and I agree, adding, “We can take turns being the person with cancer to snag a free desserts! Hashtag: Boob Snack!”

We leave the place cackling like mad women and tromp to the nearby beach to take selfies in the sunset. It was the best end to a day a girl can have, surrounded by loving, laughing ladies.

That’s the news, everybody. I go under the knife on August 20th. And while I appreciate thoughts and prayers, I’m even more appreciative of thoughtfulness and practical help. Which leads me to my second bit of news.

Before any of this happened, I signed up to take part in something called GISH, an acronym for the Greatest International Scavenger Hunt (the World has Ever Known) which starts JULY 27th. I’ve never done it before and, from what I understand, I will be performing acts of charity while dressed entirely in cheese, or some other wild suggestion, created by a team of very disturbed/imaginative people.

This brings me to you…my adoring friends, my extended family, and wacky Chicago fan club! (Please note the use of the Oxford Comma per your request, K, J, and MJ!) I hope I may call on you all in my hour of need. If I require someone to go out, dressed like sasquatch in a tutu, to serenade strangers on a street corner while playing a stringed bass (the fish, not the instrument) I am totally playing the ‘C’ card and asking for help. It’s either that, or you get to mow my lawn for me. You decide. But, I’m totally milking this cancer thing for all it’s worth. Consider yourself warned.

Tomorrow I get the kid back from camp. So, if I miss your kind words, know that I will look forward to reading them once life gets back to normal. For a given value of normal equal to infinity plus or minus the deviation of the norm over pie.***

Asterisk Bedazzled Footnotes:

*The third movie is always the one where the hero wins in the end, right? So, it’s all good.

** Unless one could be diagnosed with unnaturally young and perky boobs after 50? It could happen. Right?

***This is not a typo. MMmmmm…PIE!

Happy Lousy Valentine

Pick on You to Be Valentine
Pinterest: home of the most disgusting things you can Google.

We were introduced by a friend.

She didn’t know you would be so clingy, so demanding.

Such a total leech.

Sucking the life out of me.

But when you started in on my kid, that was it.

It was time for you to go.

It wasn’t easy.

You didn’t want to leave.

It was clear.

You had to die.

Stuck home on a snow day, I’m Googling ways to end you.

It wasn’t enough to get rid of you.

I had to totally erase your existence.

Clean anything you’d touched like a literal plague.

Boiling all the sheets was easy enough.

But trying to get a kid to sit still, while I tore your influence away one painstaking strand at a time?

Just awful.

Everything had to be examined.

All the lies and denials.

It was a total nit-picking nightmare.

Kiri Louse 2

I went to a specialist.

We went over everything.

Talked about how you wouldn’t let go.

How I just wanted to cut you out of my life so badly I was willing to get rid of anything you held dear.

“Just do it.” I told her. “Quick, like a band-aid. I’ll close my eyes and think of Sinead, Sean, and Shaquille. They’ve made it work for them.”

She talked me down from the nuclear option.

Getting your hair done is usually a calm, soothing experience.*

But getting rid of you was not.

With every stroke, it felt like I was being pulled in two.

As she scorched my tresses in thirty-second blasts, I visualized you frying until your little head popped.

I imagined your tiny death rattle.

And then I went home and cleaned like a woman possessed.

If you’d touched it, into the garbage, laundry, or freezer it went.

And then, I tackled my child.

It wasn’t pretty.

It wasn’t fun.

But it had to be done.

And if you ever come back into my life, I will totally do it again.

Breaking up is hard to do.

But in eleven days, after a repeat cathartic cleansing, it’ll be over.

I’ll finally be rid of you.**

Happy Lousy Valentine’s Day, you creep.

 

Lice Check

Asterisk Bedazzled Footnote:

*I’ve never paid so much to have my hair done only to leave a ‘stylist’ looking more like a train wreck. Except for the time I went to high-end salon and they gave me (without my permission) some godawful cut called a ‘Rachel.’ Looking back, even this experience wasn’t that bad!

**Don’t visit us for at least two weeks to be safe.

Kiri Louse
The price we pay for hugging people.  Maybe my son had the right idea all along.

 

*_____________________________________*

You read this far bonus:

I found a weirdly appropriate book in French while searching for Google images to accompany this post. I couldn’t quite fit it into the above text but wanted to share it with you.

Here is: The Terrible Adventures of Valentine and Her 118 Lice.

Valentine and her 118 Lice

Yes, I’m giving you lice for Valentines.

It truly is the gift that keeps on giving.

 

Featured image available at: https://www.toilette-humor.com/valentines/valentines_heart_rejects.shtml

 

 

With Prejudice

I’ve been keeping secrets.

Because I had to.

Because it involved a court case.

That involved my son.

I wrote an anguished post with gut-wrenching pathos at the time it happened.

And I’ve waited until the final hearing to share it.

You may question whether it is appropriate to publish such personal information.

I certainly have.

But, I have decided that if it is at all possible to help another child by sharing what we endured…

…to reach out to other autism families.

…to other police officers.

…to other neighbors.

Then, maybe next time, nothing bad will happen.

Or something better will happen.

Or nothing will happen at all.

And wouldn’t that be beautiful!


Cops
Who did this protect and serve?

June 9, 2018

Dear Officer:

We met today under the worst circumstances. You were just doing your job; I understand that. But I feel I need to explain why I behaved the way I did and, perhaps, you can understand a little bit how the exchange seemed from my side of the handcuffs.

I came to the door, half-clothed and disoriented by lack of sleep, to learn my son had escaped. For fourteen years, I have been responsible for keeping my child safe and I have failed. Again.

But this was different from other times.

The neighbors whose home he entered were sleeping. All they heard was an intruder.

And my son no longer looks like the little boy he is.

When you first approached me, you said something about my son not responding to requests. My reply was not polite.

“Of course he can’t respond. He is a non-verbal autistic!”

You walked away as if you needed space to process that.

So, when you came back and asked me, “Do you realize what might have happened?” I answered you honestly.

“Yes. Yes, I do. It is my greatest fear.”

I was not trying to argue that the situation wasn’t serious. I was just grateful nothing worse had happened. I was focused on making my son feel better, to calm him down right now so he wouldn’t injure himself.

And you wouldn’t let me see him.

You have protocols for interactions. None of the officers would let me approach the car where my son was handcuffed. But I could hear him wailing from where I was standing in my bare feet on a damp sidewalk. You have your emergency response and I have mine.

I have a mother’s need to care for and defend her child. It doesn’t matter that my ‘child’ is five feet eight inches tall and weighs 170 pounds. He is still a child who was crying because you had his blanket, crayons, and papers. Materials now taken away in evidence.

It is probably not expected for officers to feel empathy for the wrong-doer, or his mother. To care about both sides of an equation. Perhaps you were running on adrenaline?

Did you train your firearm on my special need child? He couldn’t follow a simple command like, “Put your hands in the air and get on your knees.”

This thought haunts me.

I later learn, from the reports, that you had to tackle my child to get the cuffs on him. That he resisted and clung to a door frame as he was pulled from the house. This explained the bruises and abrasions.

Trust me, I can picture what might have happened in painful clarity.

In the past, when my son has escaped and entered homes or the nearby church, people have recognized his special needs and things have been okay. Maybe that made me blind to a growing problem.

The fact that my son was wearing a pair of Christmassy pajama bottoms and a Victory Day t-shirt from the school’s special needs programming wasn’t enough to tell you how very special he is.

The training that kicks in and locks an officer into a rigid response doesn’t allow you to recognize my shock and relief at a nightmare that wasn’t fully realized. Perhaps that looked like an insult to you? It wasn’t meant to be.

You couldn’t know that I had been sick with Salmonella. That Friday night was the first night I got any real sleep in almost a week. So, when my son woke at five a.m. Saturday, I was disoriented and put him back to bed. That when he woke me at 6:10 a.m., I was more so. That I fell back asleep is my fault. I promise you, I’m wide awake now.

I am haunted by what might have happened. I am haunted by it every time he is out of sight. I am haunted by a future I cannot see or control but can only dread. Fear never leaves me.

I am grateful that he wasn’t taken into a police station and booked. Thank you for releasing my son into my custody. Even if, like Cinderella, you sent him home with only one shoe.

I had hoped that the neighbors would drop the charges against my son for entering their home and scaring them so badly. But their fear was greater than their understanding of autism or the limits of a system that is not built for children like mine.

I do not blame them. Or I try not to. I understand how it must have looked from their side of the road; I just wish they could see the situation from mine.

Just as I hope you can understand. And that you never learn how it feels to watch your baby in handcuffs, crying and just wanting to go home.

*


Like many unpleasant life lessons, this has been a learning experience.

The wheels of justice move glacially slow. 

We waited weeks for the notice that my son was being charge with first degree home invasion. Then we had to be assigned an attorney by the court. Then there were appearances and reports to submit. The sheer drag time of getting a competency review dulled the initial sharp stabs of terror to a steady, gnawing anxiety.  I cried a lot this summer and into the fall.

During that time, Child Protective Services became involved. I was very grateful for the unexpected kindness of the Children’s Services Specialist who eventually cleared me of charges of neglect.

There were some positives.

The county health organization expedited Alexei’s process for getting ABA assistance as well as Community Living Supports. We are finally getting the help we’ve needed. 

Also, I was able to take advantage of a program through Vivint Gives Back to get a reduced rate for a security system that will wake me up if any one of the doors or windows are opened.

And my son’s window now has security bars, because he can get into trouble even faster than an alarm system can wake me.  (I stopped jerking awake at the slightest noise after these were installed.)

My son’s psychiatrist agreed to let my son take stronger meds to help keep him asleep.

And this week, my son was declared legally incompetent.

The case was dismissed with prejudice. Which is a good thing. It means he can’t be held responsible for his crimes and the verdict is final.

And I can only hope that the next time a family like mine is struggling, that it doesn’t take a crisis to get assistance. And that maybe the neighbors will offer to help make our lives easier instead of harder.

As for me, I spent these months channeling my fears and anxiety into my garden. Every time I had a panic attack or thought about losing my son, I planted flowers. I think I there are over five hundred bulbs and perennials out there now.

So, when spring arrives, perhaps it will bring a promise of better things.

Tulips

 

 

 

 

Diarrhea Diaries: Volume II

Warning: Graphic and disgusting subject matter. Not for the faint of heart. Reminiscent of my prior post on the topic: The Diarrhea Diaries. Which, as it turns out, was volume one of an unfortunate series.

*

Dear Diarrhea:

The US Food and Drug administration recommends two to four servings of fruit per day.

I don’t think they had this in mind:

BEWARE KILLER MELONS!

 

Killer Watermelon
Borrowed without permissions from drawception.com.

If you visited the CNN article I referenced, you get why I fear produce. If you didn’t trip the above link, the 20-point, bold font title of the article pretty much says it all:

“Multistate salmonella outbreak linked to pre-cut melon”

Now the fact that pre-cut watermelon has been spreading salmonella throughout the midwest wouldn’t ordinarily concern me except for two things:

  1. I ate some pre-cut watermelon Sunday.
  2. Monday began a marathon that makes the prospect of running 26 some miles actually pleasant by comparison. This is not that kind of marathon.*

I did not buy my melon at any of the stores referenced in the CNN piece on salmonella contaminated fruits. This does not stop me from putting a very strong set of coincidences together and coming up with a likely culprit to my week spent regretting everything I’ve ever eaten that I did not personally sterilize in a 1400 degree Fahrenheit kiln.

I spent the last (gets calculator, does math) 168 hours visiting the powder room. HOURLY. Sometimes more frequently. A brief itinerary of my adventures can be summed up this way:

Day 1: 6:00 a.m. – stomach lets out initial howls of protest. By 4:00 p.m., I am so sick, I’m curled up on the floor of my son’s therapy office wishing I didn’t have to drive us back home. 

“Can’t we just live here?”

Day 2: After waking all night long to tango with the toilet, fever strikes and I shake my digital read-out thermometer convinced it has to be wrong.

Temperature Degree Thermometer

Day 3: Have decided that having a will to live kind of sucks. Scrounge through medicine cabinets to find decade’s old Tylenol and take it, hoping it will kill me.

Day 4: Fever finally breaks and I would celebrate, but I’m getting low on toilet paper and there seems to be no end in sight.

Day 5: Am now reconsidering my agnostic stance and will willingly convert to whatever religion will cure me.**

Day 6: There may be light at the end of the tunnel, but I suspect they are the tiny sparks as each of my brain cells implode from dehydration. I gird my loins and guzzle Kefir straight from the carton.***

I wipe curdled cream from my lips and scream:

“Take that, you plague-ridden, bacteria bastards!”

Today is Day 7. It has been a week and, slowly, I am feeling somewhat human. Though, of course, the diarrhea hasn’t given up trying to kill me.  I counter its vicious attacks with a chemical carpet bombing of Gatorade and Live-Culture acidophilus pills.

I’d really like this to be the worst thing that will ever happen to me, but I known I am just not that lucky.

As for whether this was a case of Salmonella or not, who knows? If it wasn’t, I sincerely pity the people who’ve had it worse.

If anybody needs me, I’ll be in the bathroom…freshening up.

Asterisk Bedazzled Footnotes:

*Hint: it was not a Law & Order Marathon either.

**I’m looking at you, Vishnu, you beautiful blue man. Although, Shiva the Destroyer makes more sense in the circumstances.

***Kefir – the sound you involuntarily make after tasting fermented yogurt drink. Which tastes just as bad as it sounds.

 


Feature image stolen from UK Pinterest site. Please forgive me, I have no energy or desire to get my own watermelon and recreate your excellent work.  Although, Gallagher’s work on expressing rage by smashing fruit with a giant mallet is starting to make a great deal more sense to me now.

Skinny-Jeans, Heart Attacks and Crayon Calamities

 

“Hello, this is the VA triage line, how may I help you?” The female voice on the other end of the line is calm and reassuring.

“I think I’m having a heart attack.” Me, not at all calm or reassured.

“What symptoms are you having?” The triage nurse asks.

“It felt like someone stabbed me in the heart with an ice pick.” I say, holding a hand to my chest as if I could somehow prevent a relapse. “Can I go to the VA for this?”

“Ma’am, if you think you are having a heart attack, you should go to an emergency room.”

And so starts a most bizarre week with not one but two emergency room visits for what have to be the dumbest reasons ever.

I wish I were making this up.

*

Art - Angry Crayons
Thank you to the first grader, Phoenix K. who drew my sentiments so aptly.

Despite it being a snow day in April, Monday, which is also Tax Day in America, has been mostly uneventful. After a weekend trapped in the house due to an ice storm, you’d think the kid would be climbing the walls. But no, the boy child is thrilled being home and is keeping himself entertained. I’m firmly ensconced in sloth, enjoying Supernatural reruns on this lazy afternoon. So, I am totally unprepared for the Grim Reaper to make a house call.

I am a borderline hypochondriac. Even I have a hard time taking myself seriously. One of the surest signs that I’m not that sick? I talk about it. I kvetch. I whine. I exaggerate the nature of my near-death experiences. (Spoiler alert.)

I suspect that, somewhere deep down in my soul, I believe I can stave off something really bad happening if everything is a joke—an opera of misadventure and suspense resolved with a laugh or two. But when something rears its cackling death skull, I get quiet. Really quiet.  That is, until I can laugh about it again.

When the pick ax struck, I wasn’t laughing.

Here I am, mid heart-attack, maybe, and I’m staring at my autistic teenager who I can in no way take with me to an emergency room. What can I do? I don’t call an ambulance. No, I call my mom.

“Hi, you caught me in the middle of something.”* Mom tells me.

“I’m sorry to bother you, and I wouldn’t, except I have a problem. I might be having a heart attack.” I insert quickly.

“What are your symptoms?”

I tell her the details in brief and end with, “I spoke with the VA nurse and they suggested I go to the emergency room.”

“You know it’ll cost you a thousand dollars to go to an E.R.!” That’s my mom, ever the frugal one.

“Yeah, but I suspect ignoring a heart attack will cost me more.” I say.

She doesn’t argue with this. Like the trooper she is, mom drops everything to come watch my boy.

Fifteen minutes after that, I pull up to the nearest after-hours emergency center. I park and am through the door as fast as someone who thinks they are dying can manage.

Let me just boil down the results into one exchange:

“Were you doing anything strenuous or feeling particularly anxious when the pain occurred?”

“No…not really. I was sitting on the couch watching tv. I didn’t feel anxiety about anything.” I say, but then a thought occurs to me. “Uh…I was wearing a pair of skinny jeans though, and they are kinda tight. I might have been taking shallow breaths—maybe I was hyperventilating without knowing it? Could that cause heart problems?”

“Skinny jeans do not cause heart attacks.” The doctor reassures me. “The E.K.G. shows no signs of problems. You have no edema. No signs of a clot. We’re going to label this non-cardiac chest pain.  We’re releasing you, but make sure to follow up with your physician”

On the way to the med center, I was making all sorts of promises to do better. To get more exercise. To eat right. To take care of myself and my son the way I should.

On the way home, I bought celebratory donuts and, once mom had departed, lounged in my yoga pants, taking deep, even breaths, while licking frosting.

Art - King Evil Gingerbread Man
I am sad that Presley made King Gingerbread Man the evil villain. Personally, I think Gingerbread should be king for how much fun it is–what other cookies can be made into houses? I ask you!

This would be the end of my tale, taking a moment to laugh at the fleeting promises we make to be better people when we think our life is on the line, except that it’s not the only faux emergency I’m going to have this week. It’s not even the weirdest one.

No, this happens Friday.

My mom, the boy child, and I are scheduled to go to the local Art and Chocolate Walk which is an exhibit of local school children’s artwork at area businesses. It’s a favorite event of mine—not so much my son though. So partly, I blame him for what happens next and, in hindsight, it’s pretty damned ironic.**

We are in the parking lot beside the local mom and pop restaurant, mom gets out of her car, chatting on the phone with my brother. I’m trying to lure my child with the promise of chocolates and a walk.

He is having none of it and plops down on the sidewalk, sulking like a big dog who’s lost his favorite chew toy.

I run to grab his headphones, hoping that with one sensory battle tackled, he might tolerate the crowded venues. When I get back, I come up against Grandma On The Rampage.

“Have you seen his eyes?” Mom asks me.

[Note: she’s able to look into her grandson’s eyes right now only because he is sitting practically on the ground. He towers over both of us.]

“He’s autistic. Do you know how hard it is to look him in the eyes?” I say not a bit defensively.

“You need to be more careful and pay attention.” Mom adds, as if she never left me at my grandparents for days when I was a kid with a raging sore throat that ended up being a streptococcus virus my grandmother treated by swabbing my tonsils with Merthiolate on a Q-Tip.

So, plans canceled, I drag my kid at 5:00 o’clock on a Friday to the same exact emergency after-hours med center for treatment of what might be an eye infection or blocked tear duct.Eyeball

 

I do not ask my child if he needs a doctor—he rarely tells me when he does need one—so I just skip straight to the E.R. visit. I now wonder what he might have said…or may have been trying to tell me.

We are at the front desk and I’m handing over the medical cards and explaining our purpose of our visit and my son picks through his perpetual tin of crayons and markers to extract a red stub of an oily pastel he has no doubt stolen from the school art supplies.

I snatch it and its subsequent twin from his hand and wrap them up in tissues I nab from the front desk.

“Sorry, these can make a terrible mess if I let him have them.” I apologize.***

We are shuttled to a quiet room which my son inspects with the skills of a burglar—testing all the cabinets and drawers for contraband.

Art - Spectrum Health
I had to use Cecily’s work once I saw that she’d drawn a Spectrum Health medical professional. They all deserve monuments for what I put them through this week

The nurse who inspects my son and gets his vitals is noncommittal. She sends in an intern…or a trainee nurse practitioner of some kind. Maybe the first nurse suspects and wants to see if the newbie can figure it out.

Anyhow, it takes this young lady less than two minutes to identify the problem. She’s eyeballing his hands and I dismiss her concern that it’s any kind of blood.

“No, that’s just the pastel crayons he likes to play with.” I say…and that’s when it hits me. “Oh no. You don’t think…?”

She says nothing, instead, she wets a tissue and washes a smear of red off of my son’s hands. She gets another square wet, asking cautiously, “You don’t think he’ll mind if I dab his eye?” With assurances, she gently taps at the inside corner of his eye—which before this moment, looked like an inflamed nightmare—and, of course the red comes off after a few brushes with the napkin.

“Do you have a medical code for crayons? Something that doesn’t cost too much?” I ask, lamely.

“I’ll pick the cheapest code I can find.” She promises me.

I suppose, I’ll have to take comfort from that. If not from the fact that my son, who has since caught a virus and is home sick, suffered only from an overexposure to art crayons if not actual art exhibits. (Though you’ll note I did manage to go see a few displays which I promptly stole for this blog post.)

As for my chest pain, you’ll be happy to know it isn’t fatal. The stabbing sensation wasn’t in my heart—or in my head—at all. With a few pointed jabs of her finger to my sternum, Dr. B at the VA diagnosed it as costochondritis—or an inflammation of the cartilage area near the breastbone. You’d think I would be grateful.

I believe I put it a little less tactfully.

“Sonofabitch! Maybe you shouldn’t poke that hard!”

There’s no pleasing some people.

Asterisk Bedazzled Footnotes:

*This is a euphemistic was of saying, she was on the potty. I hope both you and she appreciate my sensitivity in this delicate matter.

**Really, it’s like he was saying: “So, you like art, do you? How do you feel about self expressionism or the artist as the medium?”

***For those of you who have already put two-and-two together, wait for people as slow as me to do the math. Let’s not spoil the adventure, shall we?