Friday, January 22, 2016

Good Grief. Dealing with death and special needs.

We've recently had a loss. Our good friend and neighbor, Becky, passed away last Friday. I've been asked more than once how I explained death and dying to The Chick Magnet. They were concerned that he wouldn't handle it because of his intellectual delays, etc..

The answer is fairly cut and dried.

I don't have to.

He's lived enough loss in his young life, he could write a book on it. He was born into the time of the death of his great-grandmother. Once he was old enough to be conscious of loss, it was his Bumpa, his Daddy, then two young friends and another "Mom" friend who left behind a 4-yr-old. That was his first experience in learning that Mommies die too, since all he had known was loss of male figures in his life until then. That left us vulnerable for a long time.

His Grandma V. was a hard one, since we lived so far away, but we had a good visit with her in the months preceding, and that eased it a bit. His auntie called from her bedside to give him the chance to tell her goodbye. <3

Now this.

Becky was a fixture for us, she was his buddy, his cheerleader and one of his biggest fans. She was my touchstone, my partner in fighting the anxiety we both dealt with in different ways. She became a kind of surrogate Grandma for Steven, especially after his own remaining grandmother flaked out on us.

She jousted her dragons of depression and anxiety, stressors coming from both within and the outside world. I would get a call or a text saying "Can I come over?" and we would sit and wait it out together until her husband came home. Sometimes, the quiet of being alone created voices that scared her. Sometimes, her own mind turned on her for no good reason. Dementia was a very real monster.

At times it was my turn, She would babysit me when the first twinges of a panic attack would threaten. She understood them all too well, and knew that just being there helped. Just being. I would try to joke and bluff my way out of it, but she knew. She always called me the brave one, but she was about to dethrone me for that title.

When the call came after an appointment, the call that she had decided to enter hospice, my ground shook. My first instinct was to try to talk her out of it. I knew she had a chronic, degenerative illness when I first got to know her, but it wasn't real, nope. Not going to happen.

Steven and I are a lot alike. We deal with our anxieties and fears by wanting to fix things. Surely, we could fix this?  After her original prognosis of two days began to stretch out, we kept up our vigil of "just being". Her dementia eased it's chokehold enough for her buddy the Chick Magnet to be able to come for a visit and give his stamp of approval on the ladies who took care of her. We were allowed to hope she would get a reprieve, and we could keep her.

Her body had other ideas.

On his last visit, she was having a bad day. She loved him enough to ask that he not come in. She didn't want his last memory of her to be of her fighting to breathe and being afraid.

He was content to send in a hug and to get another smile by having me relay the message he as busy out in the hallway chasing the ladies.

We went home to face reality together. During hard times, His Majesty and I can be like oil and water, but the hidden gift is that caring for him gives me strength I don't know if I could tap into otherwise. Tears don't come easy for him. When they come out as anger, it scares us both, but we find our way through.

I would go to sit with Becky as often as I could. Steven would text for updates during his day and quiz me when he got home. I'll admit his coping mechanism of hyper-vigilance doesn't go well with the loss of my anchor, but we have a wonderful psychologist to guide us. It's hard, but we'll make it.

I'm thankful for my daughter, who also has the gift of "just being". Knowing she's nearby keeps us both from flying off, and the dynamic duo text each other nonsense and inside jokes that remind him someone will always have his back.

All special-needs families deal with that fear. We need to create a network of support, so when we're gone, there will be enough people "just being" to carry on in our place.

I plan to carry on. My writing is rusty, but Becky made me promise to get a book done one day. I have no choice but to try. Both she and my late mother-in-law have made me swear to never give up art like they did, so I'd better get on that too.

Thanks for reading my rambles.

Monday, December 15, 2014

About dignity and a good old-fashioned Humble Brag.

There was a letter to the editor in our paper recently with a gently chiding title about dignity and decency.

In it, the author tells her tale of her alleged encounter with a homeless man in one of our local thrift store, which she chose not to name. The clerk, she reports, THREW the elderly, frail old man's change at him while other customers laughed mockingly when his bags ripped, nearly causing him to drop his Christmas treasures.

She alone rose to his rescue, helping place his new shoes on his feet, offering him a ride to wherever he needed, although she says she KNEW where, as she had seen him in her work with the homeless.

A person at the store mocked her for allowing him in her car, but she was undeterred, saving him.

Her description of his humble gratitude was heartbreaking, her pleas for the community to take notice of these people and be kind were clear.

When a local radio personality dared to opine on the truthiness of the account, some people were horrified. Some seemed to stumble over each other, calling him names to prove how kind they are.

What started as a little anecdote on her own FB page about her generosity, which she SWEARS wasn't about her, just that poor little old man, took on a life of its own today. There's an actual word for a story that highlights a person's own good deeds in a modest, self-effacing way... a Humble Brag and even a "Facebrag".

Whether it was one thing or another isn't the real point, I guess.

It's about dignity and decency.

Where was HIS dignity in this scenario?

Did he agree to have his misfortune used as a modern-day parable to nudge the rest of us to behave ourselves?

Did he sign up to have his frailties described in detail, to hear how her eyes welled up with sadness and how his struggle to walk was so poignant contrasted with his offer to carry her heavy purchases for her?

Does it matter that the author left out names, places and details when HE would know immediately if he read the paper?


I even have to be careful here, since what I find important to share might be embarrassing to my son beyond the FUN kind of embarrassing. ;)


I have two distinct memories from when I was very young, both acts of giving to our family.

One was a cold winter evening when a basket of Christmas goodies found its way to our porch. Mom came lugging it in, and it felt a bit like magic. We knew it was someone from the church, but the only clue to the identity of the giver was a car door and a giggle in the dark.

The second was when I was older, after Dad died.

There was a lady in Mother's church who liked to give her checks... but presented them in front of the congregation with a flourish.

I'm betting the gigglers had a lot more fun in the end.

They let the gift be about the recipient.

Friday, October 17, 2014

When you live with the Boogyman, Ebola doesn't scare you.

Yes, it took another rant to get me to dust off the blog.

Ebola in Africa

Ebola in America

Same road, different journeys... a woman advising us all to be cautious of "new" people (Meaning the refugees and immigrants in our area who may or may not even come from the affected regions of Africa...) to protect our families is the lucky winner who set me off today.


I can't even stand it when my daughter who lives in another state has a cold. I can't imagine what people whose families have been hit by or are threatened by Ebola must feel. Yes, let's just shun our neighbors in case their fear and grief are contagious, shall we?

I've also been asked if I'm terrified of ebola, since Steven has some medically complex things going on. My answer?

It's not even on my short list.

Here are a few Boogymen who live in our home, on the bus and tail us while we're out and about.

1. Strep . Yes, those of you who send your kids to school with a sore throat orgo to work when you feel like crap (by necessity or by choice) are putting him in danger because people with shunts, ports and other medical devices can become gravely ill or worse from your cooties.

2. Staph. Common bacteria that can do the same or worse than #1. That doesn't even include the risk of resistant strains resulting from people misusing antibiotics.

3. Shunt failure. Any time, any place, it can fail and send him from giggles to an unresponsive state within hours.

4. Seizures. Just when we got used to the normal pattern of things, they changed and knocked him flat.

5. People who don't vaccinate their children against serious illnesses because Jenny McCarthy said it was bad. Seriously, you people scare the shit out of me.

And so on...

When you live with the Boogyman, it just takes a lot to make the list. I probably have a different triage system for my life than people who have the good fortune to be so secure in their safety that they can project their fears out that many degrees of separation.

Frankly, I get jealous of it from time to time. I envy parents who can truthfully tell their children there's no monster under their bed.

I try to be understanding of people who ARE afraid, since I get that we fear the unknown, and I may be the jaded one in the scenario. It's not because I'm sticking my head in the sand or in any kind of denial about a serious illness, though. It's because I know, for as many threats as my son faces, there's a cancer patient or someone living with AIDS out there reading this thinking "Quit being such a baby, Barb! You think THAT'S bad?"

Different journeys, indeed.

Saturday, August 16, 2014

Don't get lost in your "ism".

I was just accused of being racially insensitive for opining that we all need to listen to each other, no matter what our race or creed. This was regarding a strict list of rules written by a person of color about when, if and how to discuss anything related to race if you're white.

Is this what we've come down to?

Truth be told, we live in an age of "isms"; racism, ableism, sexism, ageism... and a hundred more.

If I chose, I could live my life as a sufferer of weight-ism.  Every slight, every sidelong glance, every rejection could be because I'm obese. I could rail at my thin friend that I've been stared at all day because I'M FAT. I could go on and on about how each and every slight is adipose tissue-related and shush her every time she opens her mouth and tell her not to even DARE tell me I'm wrong because she doesn't understand the struggle.

What if she was just trying to tell me I sat in some mustard and have a huge yellow stain on my pants that looks like it's been there all day?

Sometimes the perspective of an "outsider" is worth considering, even if you really HAVE experienced all the bad things because of your "ism", it doesn't mean you can't occasionally be wrong or overreact. To shout down and disregard anyone who tries to point out what you may be missing only hurts YOU in the end.

What if I organized a protest that involved looting Sandy's Donuts to show all those skinny ones that they'd better stop stereotyping us chubsters? Could anyone smaller than I am point out the irony, or should they shut up and eat lettuce because they can't know? Would it help to highlight the very real ways people of girth are discounted in society? I think not. It would end up looking like a bad punch line. (Punch? Will there be cake? :)  )

When I see footage of large groups composed primarily of young black men destroying property and stealing every night, it seems to ooze dissonance. I feel it has nothing to do with the young man who allegedly got shot for being black at the wrong time. IMO, it's because there's an element in society that seems to lie in wait for a spark to justify their rage. It's not "a black thing", necessarily racist to point out or you wouldn't have seen the riots over hockey games, would you?

Was that racist, anti-Canadian or elitist to say?

I don't know what it's like to be black, this is true.  I can't say I know how it feels to walk down the street seeing white people react by clutching their purses a little tighter just because my skin is darker than their fake spray tan.

I also would never dream of trying to tell someone who has experienced racism that I know just how they feel because I too have been excluded for being a fat, white, middle-aged woman. Our experiences are apples and oranges.

I only have a brief sting of being the racial minority under my belt. I got picked on and attacked on the playground for being white the year my Daddy worked at the reservation school. That gives me a peek, but not the full picture.

I don't know what it would be like to live my whole life like that any more than the young mother who told me she knew JUST how I felt about my son's disabilities and health issues because she was so scared that time when her son had to have tubes put in his ears.

I could have accused her of having an ableist outlook that discounted my son's medical issues and trivialized his disability and my own struggles as his sole parent. I have, on occasion, rolled my eyes later on. That's true.  I just have to keep working on seeing the attempt at identifying as what it most likely was... an attempt to connect and open up a conversation.

Working to avoid getting tied up in our respective "isms" is the only way we can hope to feel connected enough to be able to point out the mustard and learn about each other.

End of Ramble.

Tuesday, July 29, 2014

Is there room for shaming in parenting?

The talk on the local media today is a West Fargo mother who posted her daughter's concert tickets for sale on an online garage sale page.

I won't name her or share the post because I really don't want to give her more attention.

My problem isn't with the fact she sold the tickets as a consequence of the child's attitude (It came out this morning the daughter is actually 18, so not exactly a baby anymore.) but how she felt the need to post that her daughter was a "spoiled brat" who didn't deserve them.

A lot of back-patting and congratulations followed, and anyone who spoke up about feeling name-calling and public shame weren't parenting techniques we agree with seems to be shot down with talk of "You can't whoop your kids like I got anymore, that's why kids don't have any respect !" and called names like "wimpy" or "wishy-washy".

I refuse to accept the only alternative to reason and consistent teaching is "whooping" or inviting public critique on their misbehavior. In my opinion, if you have to resort to trolling for validation of your parenting in a public forum of any kind, be it on Facebook, a street corner sign-holding session, or even like my own mother did pre-internet by telling her church group how rotten I was so one of them would come over and wag a finger at me... you've already lost. If there had been Facebook in the 70's and 80's, she would have had a field day!

I'm far from a perfect parent, and my kids will be the first to tell you they pushed the limits just like every other normal, healthy kid does. I'm pretty sure my kids have grown into decent adults as much despite my parenting as because of it, but I do know our relationship as adults is the reward for surviving all the teen angst.

Oh how I know tempting it is to react in anger when they push ALL your buttons, but I've seen the rewards of waiting until I could respond from a better place. When I wanted to yell "OH YEAH? I HATE YOU TOO!" I would have tried to justify it to myself and come up with something plausible... but delaying that instant gratification until I could tell them I understood why they felt frustrated with me but the behavior they used to express it was going to have consequences enabled me to sleep at night. I used to nearly chant a mantra of "It's not personal!" when my teen was doing her level best to hit all the soft, vulnerable spots because the hormonal rollercoaster and pressures of school left her to lash out at the ONE person she knew would love her anyway. To react by calling her a name or belittling her would have driven her farther away, when all the screaming teenager wants deep down is to know you love them enough to set limits and be there for them when their heads stop spinning.

I get the feeling of "Ohhh, I'm going to TEACH THAT KID A LESSON!" I really do. I could almost understand the frame of mind of a young mother of toddlers I once knew who gloated over breaking her son's tonka truck because he gouged the top of the table with it.

Retaliation is childish.

You can't use it to try to demand or extort respect out of people, even the small ones.

I just had to learn what lessons were going to help change the behavior and model how grown-ups should handle those furious feelings, not just soothe my ego and fuel my own anger even more.

Taking the truck away, then having him help fix the scratches with her or his Dad might have been a good chance to teach him how to respond to his own anger.

My kids know I will tell them the truth, good or bad. Whether it's with Steven over his medical things (Yes, it's going to hurt, and the doctors will give you medicine to help that and I'll be right there for you.) or my own shortcomings... like when I would overreact and ground my daughter for a month over something trivial because I was stressed about something entirely unrelated. Admitting I was wrong to do that was HARD. My father could never admit he was wrong. I can understand why, but I resented it so much I swore to myself I'd be different.

It paid off when my kids were able to come to me and admit when they fell short. They knew I'd understand, even if I was upset. I suppose it helped that we had a rule about "If I hear about what you did from YOU before the school, the other kid's mom, or the neighbors tell me, your punishment will be HALF... and DOUBLE if you lie to me about it."

They figured the math FAST. ;)

To make my long ramble shorter...

Sell the tickets, take the car keys, cut off the phone, make them work for what they have... it's all a part of the learning process.

All I ask is that you think about throwing out words you can't take back.

Oh, and whoever said "...and words will never hurt me." has never met my mother's church buddy.

Sunday, June 29, 2014

How We Became a Roadside Attraction... the Vacation that Wasn't.

It has been many years since The Chick Magnet and I had hit the road. A family reunion seemed like the perfect excuse to head back home and have a weekend adventure.

We had no idea what an adventure it would be!

Unpack cat. Check.
Shiny new tires, check.

 I'm not organized by nature, but when it comes to traveling, I'm a List Maniac.  Gas, check, new tires, check, because... and I quote... "We won't get stuck on the side of the road now, no sir!"

Bright and early, we loaded up to hit the road. I merged onto the interstate like a pro, without a trace of my Driving Lamaze Breathing I developed when moving from a town with a handful of stop signs that acted as loose suggestions for tractors to a bigger town with actual lights, multiple lanes and on-ramps.

I negotiated miles of road construction without a whole lot of input from the co-pilot, other than giggles as we traded fart jokes whenever the detours led us to drive on a long stretch of rumble strips.

Something smelled a LITTLE funny when we left I-29 at Grand Forks, but we blamed the smoke-belching semi ahead of us, and each other in case one of us hadn't been joking.

It seemed like the cruise control was acting funny. It was windy and we'd been hitting some bumps, so I turned it off. Life went on.

For a while...


Oh, crap.

I eased it into the approach to a little town I hoped had SOMETHING helpful. A semi was coming our way, so I flagged him down to ask.

"Looks like you have a problem. There isn't anything there but the elevator, but maybe they know somethin'." and off he went.

I weighed my options and decided not to take my chances on the trailer with the angry-looking dog in front of it, so I turned old Red around carefully and limped along in the direction of Devils Lake until we came to a mile marker.

Our new home.
Look at the picture, then try to guess what kind of cellphone reception you could expect. Our landscape looks perfectly flat, but there are rises and valleys of all sorts, and we were at the bottom.

I finally got through to the 911 center and got the mile marker number to her as well as part of the problem when it dropped.

Steven and I were taking turns being strong and sniffly, and after a dozen or so vehicles kept on going when I waved out the window (Special thanks to the bimbo in the convertible for waving back with both hands and a "Wooooo") an older guy in a red pickup turned around and came back to see what was going on.  He wasn't sure what to do, but offered to go up higher and make sure help was coming.

We felt better knowing someone cared.

The dispatcher was able to call back, and she assured us help was on the way. It was Steven's turn for a "moment" then, out of relief.

We got a little loopy waiting, discussing life, bugs, how it's a good thing it's not 90 above or 20 below, and how much we really needed to pee.

Finally, here came the Highway Patrol. Time for a selfie?

Help's a comin'!!!!!!
We were really much happier than we look. I promise.

I hopped out to talk to the officers. While we were talking, I noticed one of them staring at the back of the van, rubbing his chin, and looking slightly confused.

Oh, right...

Remember this?
I had a bit of a Gabriel Iglesias moment while telling the story of being tired of explaining the van was dented when we BOUGHT it, so I decided to roll with it and have a little fun. I assured him it was just an estimate, not the final tally, and we all had a laugh.

*cue COPS theme*

The two troopers really went all out trying to help us figure out a way to get a tow and a ride. There are no easy solutions to a guy in a power chair stranded on the side of the road, but they kept trying until they found one.

A tow truck driver, a State Trooper and a transit driver walked into a... oh, wait. 
We lost a trooper to the guy who decided to cruise the mud in his jeep.

Steven ended up with some new friends. The Dodge dealership, the pot of gold at the end of our ragtag procession, had COFFEE, and everyone wanted to make sure we knew they were available if we needed more help. The boy and I had a lot of down time waiting on the highway to talk about how many really good people there are in the world and how the bad guys must just get all the press, since we could have felt truly sorry for ourselves at that point without anyone thinking poorly of us for it.

Watching Steven interact with this bunch of strangers made me reconsider my earlier sadness that nobody wanted to stop and help us because I realized the RIGHT people did stop in the end

They each took me aside and vouched for the others, to assure me we were in good hands. I liked that. Steven's eyes told me all was well in no uncertain terms, though, as did his honking big laugh.

Saying our goodbyes to the troopers, who made sure Steven would call them with an update at the garage.

It wasn't good news.

The shop was packed, humming with activity, but they made room for the newest patient.  It felt like a hospital waiting room, as we waited for the diagnosis.

The service manager explained to us how they would start with the smaller things they HOPED it would be, but that it may not be fixable that day.



Chunks of metal in burnt fluid aren't remotely good news.  They said it would be a week or so to fix and could get quite expensive, so they would be happy to keep the van out back for me until I decided if I wanted to move forward with repairs, scrap it, haul it somewhere else... whatever I choose.

He went one step further, calling a customer he knew whose accessible van had just been serviced the day before. He gave me her name and number when he reported back that she would be willing to round up her brother and try to drive us back to Fargo if we wanted.

More good people... they're everywhere.

We opted to call and arrange to hire a service out of Fargo, a young guy just getting established, and return the next day. Steven had his heart set on a motel stay when we set out on our trip, and a couple of calls later, I found a room. It wasn't what we PLANNED, but what can you do?

We roll with it. Pun intended.

The transit driver came back to take us to the motel and we left after paying an unusually small bill for the tow and the shop time, and only after we gave our word we would call them if we needed ANYTHING.


That poptart at the garage just didn't cut it. Pizza Ranch to the rescue!

Bedtime came early, but sleep was hard to come by. Aside from the worries and the train traffic wayyyy too close to our heads, it was the kind of night that lead to philosophical discussions in the dark. The "what ifs" and "if onlies" were discussed, as well as the "100 Ways It Could Be Worse" game...

The quiet, when I thought he had drifted off, was punctuated by "I have a question..." and off he'd go on another tangent. It reminded me of years back, the time he had nearly been taken by a malfunction of his VP shunt. I hadn't heard his voice in days, but he woke up in the ICU asking for pizza as if he'd only been out for a nap.

We spent that whole night with me on a lumpy cot by his bed, eagerly answering when the voice in the dark would pipe up with "I have a question..." or "Mom, I was wondering something..."

Music then, music now.

The reminder was nice.

Girlwatching at breakfast.

GirlCATCHING at the front desk.

We thought our adventure had taken another turn. The van from Fargo arrived right on schedule, but the driver couldn't get the door open!

The suspense was killing us.

On the road again...

I still don't know just how the adventure will end. I don't know if Old Red can be saved, or what will come next.

All I know is it's good to be home.