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.

Tuesday, June 24, 2014

So many pictures.

Early Steven and his car noises.
I have boxes of pictures from the pre-digital age, and since I took the leap to the use of a smartphone...well, I'm a hoarder of images.

I was gently teased over the weekend about being Steven's personal photographer. It's true! Video too.
Click here to see the best day ever...

Steven takes such joy in using the images we capture to relive all his happy times. He pores over his collection of joys like a giggly miser. He wants to make sure his friends and family get to see ALL of his adventures! 

 It would be easy for me to just take that at face value and not dig any deeper.

I also have a need to share him. I see what he does to people, how his joy spreads, and how he takes over a room.  I've been told time and again "I wish we could bottle that laugh."

I do too.

I feel the same kind of compulsion to share him as he does to show off to his friends near and far, to leave a wide and loud trail of laughter and that smile.

I'm just a little afraid.

My truth is in the images I've deleted, the ones I wish I could delete from my mind altogether. Frozen images of silence, tubes, machines, wires...stillness.

This is one I kept, after he was stronger than the machine that kept him breathing, when it was safe again. I was free of the ache I felt going home to an empty apartment, dropping in a heap on his rumpled bed to find some sort of reassurance he was coming home to it. To think of the walls NOT echoing with that laugh, a hundred fart jokes, and the same six tv shows sending him off to sleep each night was just more than I could take without breaking down.

As a friend said, "The world needs Steven in it."

It does.

When you lose someone, you forget how they sound.

With hope and optimism, he's going to outlive us all. Since birth, Steven has been a masters-level defier of odds and all-around miracle man.

I'm still going to bottle that laugh all I can.

The world will always have Steven in it.

Friday, June 13, 2014

I'm Not a Good Father

I remembered why I no longer watch The View about three minutes in.

They asked their male guest co-host about fatherhood, then tore into him when he started to answer.  Apparently he had made some comments on the internet that a father can give a child things a mother can't.

Whoopi and Jenny came unglued.

How DARE he say that? How dare he insinuate that a woman can't give her child everything all by herself? There are plenty of women who... why I never... HRUMPH!

I've raised my kids alone for most of their lives after the death of their father.  I know what people are TRYING to say when they give me a pat on the back and say I'm both mother and father to them.

That's just not true.

I am a hell of a good mother according to my kids, but I'm not a father.

Now that I've lost a few of you and put my feminist card at risk...

I made the conscious decision, after a couple of failed relationships with men who ultimately failed the "father material" test, to go it alone. At that point, I would have probably bristled at the notion (... and I DID when a teacher told my SON his mother needed to find a husband, but that's a rant for another day.) that I couldn't give them everything. My pride was at stake.

I've done a pretty decent job of broadening my horizons, embracing the finer points of guyness... I go to car shows, I can scratch, burp, cut the cheese... I have an encyclopedic knowledge of poop jokes.

That only takes one so far.

I can show them how a strong person copes with the metaphorical poo life flings, and I can build them up to not be limited by gender roles and to respect people regardless of their place in life.

What I can't do is SHOW them what a man should be. I've been fortunate to have had some good role models for them along the way. They've had some good uncles, family friends and now Steven has a whole new set of positive influences in the men of his day program and our activity group. He isn't just watching from the outside, pining for a Dad, that's not how we roll.  Instead, this amazing group of men has reached out to him, included him and showed him that men can be equal and loving parents to their children and stepchildren. He sees how they treat their wives with love and respect... and he gets to whisper and giggle with them about the mysterious "guy stuff".

I know some spectacular single fathers, too. They've stepped up and taken on nontraditional parenting jobs just like I have. Wonderful fathers? You bet. Mothers? Nope.

I'm NOT saying a single parent needs to rush into finding a partner, nor am I blaming women OR men for not doing things "right". I had both of my kids without the benefit of marriage, and my daughter was adopted by my new husband and had a real Daddy for far too few years before he died.

My own father died when I was in my obnoxious teen phase, so my experience with a Dad is fairly limited. My uncle died before my Dad did, but I carry part of them both with me.  I had a deep, enduring love for my grandpa, and had the privilege of caring for him until his days were done.

Each of these men brought something to my development that shaped me into the person I am now, into the parent I am now.

They loved me and taught me differently than my sweet Grandma, who inspired and comforted me in her own ways.

Does that mean I think parenthood is ONLY for man/woman couples? No.

I believe same-sex couples have as much to bring to the parenting table as anyone, maybe even more since they have to work hard and overcome much to become parents at all.

I'm just not ashamed to admit there are things I don't know. Things I just CAN'T know. I'm not offended at the notion a child can do better with the yin/yang of personalities and gender than with just ME.

We all do the best we can.

I wonder if it's just my intense dislike of Jenny McCarthy that made me yell at the tv and ask if she's SO sure she's parenting perfectly all alone, why is her son soon to have his second stepfather in his young life?


I guess neither of us are father material. :)

Thursday, June 12, 2014

Hidden Barriers to Independence and Mom's "Business Face".

His best attempt at The Face.
"I don't know what to call your face." he says out of the blue.


"When somebody messes up and you scare them with your face..."

Ohhhhh... that one!

We decided to name it Mom's Business Face, because the eyebrow goes up when I mean business. According to the boy, flames hoot out of my eyes, smoke comes out of my ears, and I have an evil smile that burns flesh. I'll have to ask his sister for a second opinion. I picture myself as a firm Mary Poppins, but it sounds like I come of as Maleficent.


We had taken a trip on the city bus that day, on a quest for barbeque at Ribfest. We were really excited, since it was our first time riding since the city finally put in sidewalks on the bus stop corner. Until now, you would have to wait in the grass or mud depending on the weather, and keep a sharp eye out for holes.

We won our game of 17th Ave Frogger and got across to the stop in one piece.  We caught the bus just in time, and Steven navigated the ramp and tight turn with skill. I helped get him into position, since the driver wasn't getting out of his seat. That was unusual.

He watched from up front as we waited expectantly for him to come back to secure the chair in the restraints.


EXCUSE ME? caught his attention, but he looked lost


Double whammy... language barrier AND he must have slept through that part of his training.


I felt the eyebrow go up, it has a mind of its own.

 Despite a couple of stuck straps, I managed to do it myself, since the driver wasn't even able to find the tie-down spots on the wheelchair.

We filed a complaint, and while I'm fairly sure this driver won't be forgetting his training again, it's not the first time... nor will it be the last.

One driver looked me in the eye and said Steven's lap belt on his chair was good enough. A few more just couldn't get the shoulder belt to work... and they have each met the Business Face. While I'm using our city bus trip as an example, we've had similar instances with private ride services with drivers who know how to secure chairs, but try to get away with leaving off a corner tie-down because it's "too hard" to get to or they forget until Steven calls them on it or they catch the eyebrow in the rear-view mirror.

It shouldn't be so hard. What about all the people without a Mom figure to help them stand firm while their needs are met? While Steven is learning to speak up for himself for the times I'm not with him, what happens to the people who can't muster the courage?

Don't get me wrong, Fargo is a great small city, full of opportunities. When you look at the big picture, people with disabilities have so many advantages here over cities many times the size. When you look at it all on paper, it looks like a smooth system.

The devil is in the details.  You can't see them until you're in the position to have to depend on others for your safety in a far more vulnerable way than would be comfortable for most of us.

I'd love to see some of our city officials dress down and navigate the metro in a chair.

I wonder what kind of face they have?