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.

REALLY?

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...

WRRRRRRRRSQUEALCLUNK.

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.

Nope.

Dead.

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.

AHHHHHHHHH....

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.



SUCCESS!!!!!
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?

Hmmm...

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.

Huh?

"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.

Anyway...

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.

Nothing.

EXCUSE ME? caught his attention, but he looked lost

Tie-downs?

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

*sigh*


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?



Sunday, May 18, 2014

For the love of God...


Alternate title: How not to hurt someone whose child is suffering.

We have a friend whose child is being tortured with never-ending bouts of pain, surgery, medical intervention... pain is trying to beat the life out of him. I can only imagine the level of exhaustion they're feeling, having been to the brink of my own sanity at a much lower level a time or two.

Everyone feels helpless.

If you have a strong faith, I'm sure it's hard to fight the urge to share it with someone who has been laid low in life... but trying to justify their pain to them by telling the parent, or worse, the CHILD how it's all part of God's plan, or how they just need to believe HARDER only causes more pain.

There is nothing useful in a locker-room pep talk to someone who is depleted in every way. 

If you think it's constructive to teach a lesson via sermon to someone who you feel could benefit from hearing how YOU find comfort in thinking God is using our baby to make you grateful for your own child's robust good health, please don't share your epiphany while they're cutting mine open again.

If you're sure suffering is the One True Path to enlightenment for the next life, there's a time and place for sharing your theory... not here and not now.

I get it, I really do.

Most people who treasure their faith are offering their prayers up as the only gift they have in hopes of healing the suffering they see.

Like his guy.
Tell me you're praying for us, and I'll see your heart and know it's a gift of love from your heart directly to my child.

Let me know you're there, wanting good things for us. I'll feel less alone.

Let me pour out my heart to you, or even just sob uncontrollably for a while while you hold my hand and just sit there.

You're good enough. Your love is good enough all by itself.

Understand that there's just no way you CAN understand our pain, even if you've had your own pain. We all hurt differently.

Tell me you feel helpless and don't KNOW the answers. I'll know you get it. We ALL grapple for just the right thing to say as if it will magically take our friends' pain away because we love them.

Understand that not seeing God the way you do just may be my path. I promise not to come into your moments of pain to try to convince you there is NO God because of your child's pain, that your belief suffering is the path to heaven is wrong, and you should doubt more and just deal with it because shitty things happen to people who don't deserve them every day.

I won't. You know why?

Because it's not about me.

I believe in miracles, no matter what they're called. I've seen my child's eyes open when nobody thought they would.

I believe that even the people who feel the need to preach, even the one who told me my child suffers because of my sins, because I don't have blind faith, or because I need to visualize with sincerity and "manifest" wellness probably mean well.

Deep inside.

Very deep.












Thursday, May 15, 2014

Shake, Rattle and Roll.


 Seizures suck. I've been slow in writing about his last trip to the hospital because we've been sorting it all out.

Steven has had seizures that we've caught since he was 5 or 6 years old. They can't pin down where they come from, why he has them, or how to make them stop. Luckily, his seizures were mild, he never lost consciousness and we were just irritated by them.

Were...

It's starting to look like (and this is my Dr. Mom Half-baked Theory) the last med we added after 5 futile days in a Minneapolis center has created its own monster.

Three times, we've tried to step down his dose and three times set off a tonic-clonic nightmare in his brain that left us all in disbelief. Instead of our comic routine of growling and laughing to try to scare his leg spasms away when a "regular" one hit after PT, his head snapped to the side, he went silent, then the violent jerking and twitching hit.

Time stopped.

I guess if you're going to have a crisis, an office attached to a walk-in clinic with a fire station across the street is as good a place as any. We were immediately surrounded by what seemed to be the entire cavalry.

I remembered to breathe while trying to look calm and pull answers to questions lobbed from all directions out of various crevices. As long as HE was breathing,  I could too. Last time, he stopped...

The fireman and the paramedic who drove the ambulance kept making sure I knew they had lots of radio traffic going, so not to be freaked out if I hear things that sounded bad.

My eyebrow went up.

Oh, you mean like last time, when I wasn't supposed to hear the guys hovering over my kid radio in that "the patient has become critical"?

Okay, I'll play along while I adjust myself to make sure the Mom eyes in the back of my head had a little help from a sudden case of lazy eye... when Moms can see to the left without turning their heads. This is usually only used to watch kids without alerting them to the surveillance. It just also comes in handy to produce the illusion of cheerfulness and blind trust in the medics while still allowing one to see every move in the other direction.

Poor Steven, the pretty young lady working on him keeps asking to hold his hand.  If THAT didn't get him, what would?

He came out of it just when his new friend was about to add some ativan to his versed. He started to wake up after the shaking wound down, and I was thrilled to see him bat his lashes at her a little.

He was improving steadily while we held down the fort in the ER. My brain bounced between the young nurse who remembered him from high school and the grumpy man on the other side of the curtain who was steadily losing a battle with the women in his life about whether he was going to just march out of there, get his Duane's House of Pizza and go HOME or humor them and spend the night to see if his blackout was another heart attack like the one he conveniently forgot to mention to the first doctor.

His wife and I bonded, because my guy heard about the Duane's idea and suddenly thought it was GREAT planning.

Thanks, old guy.

I DID almost have my own heart attack while they rolled Steven off for testing.

We refer to it as:

The Bathroom Incident. (Cue dramatic music)

The restroom for guests was just across the ER, past the busy nurses' station. I'd had a LOT of coffee, so I was a frequent flyer of sorts.

On my third trip, just as I was completing the process and washing my hands like a good girl, there was a knock at the door.

"Are you okay?"

Um, yes?

I opened the door to see the young nurse and thought "WOW, this is service!" All eyes were on me, and I hadn't even played the trumpet or anything.

Oh, but you know what?

The help button has a loooooonnnnggg cord attached. Somewhere between liftoff and purse-grab, I pulled it.

*sigh*

I gave a red-faced parade wave and scurried back to my spot in time to hear the other dude give in to the third daughter joining the dogpile. He got his pizza IF he stayed.

Steven decided he could do ONE night, especially since friends and helpers he knew and loved helped us get settled and retrieve his chair and the van. I got to run home for a bit, feed the pouting cats, pack a bag and grab a Happy Meal. Little did I know when I got the My Little Pony meal, they were referring to the contents of the bun and not just the toy prize.

After double-checking with the nurse... a nice young man with an accent that surely inspired at least one Coen Brothers stereotype... we settled in to "sleep".

The old man in the next room had to have had pneumonia, because the only thing that could have produced those sounds otherwise would be an old Model T backfiring in a muddy barnyard. Just when I got my round edges packed and balanced in the square corners of the unforgiving vinyl and concrete recliner, here it came... HOOOORRRRRKKKKsputterBARKBARKwhoooooopGROOOONNNK, with a phlegmmy spit for emphasis.

By about 5:00 a.m., it left me contemplating odd things...

The size of this baby... what is IN the wipes anyway???
Were we actually stuck in the bottom one here?






What's the worst that would happen if I tried this at home?







Last but not least... just how absolutely wonderful it was to sit awake and listen to him breathe.

Sunday, May 4, 2014

And it isn't even Mother's Day yet!

An impromptu poem by my son:

Nobody loves me as much as you do,
as much as you do when you help me go poo.

Thursday, April 17, 2014

Hannity, a new high in lows.

This is an example of everything wrong with people.  The guest uses a hurtful slur, doubles down on it with a comment about Down syndrome ... and all they worry about is that they aren't "allowed" to use their preferred insults anymore due to "political correctness"?

How about human decency?

Couldn't he have said "That's not an acceptable word anymore." instead of "We aren't ALLOWED to use that word..."???

Oh, right... the mean people who care about our children and teaching them not to use words to hurt each other are trying to take your freedoms away.

I have a few words for you Mr Hannity and guests, but I think they may be too big and/or meidcally impossible for you to perform.

Hannity and his lovely guests. Click here.


Sunday, April 13, 2014

Sunday morning Stevenisms. He's on a roll.

So far this morning, we've had some interesting thoughts...

During my silly song and dance while getting him out of bed:

"I guess MY milkshake brings all the girls to the yard."

"What would you do if your milkshake really brought all the boys to the yard?"

""How many relationships have you had?"

Time for a new song... :p

"I'm glad I didn't get one of the serious moms."

Well, I'm glad I didn't get one of the serious sons.

Thursday, April 10, 2014

Birthdays agree with him...

Nobody loves birthdays more than The Chick Magnet.

He woke up ready to roll, tolerating my loud, off-key serenade like a champ. "I can't believe I'm 23!"
Guess what day it is... BIRRTTHHHHDDDAYYYYY!!!

Neither can I. I suppose I'll have to quit telling people I'm 29 now that my children are catching up.

With the promise of his choice of lunch and Cake after physical therapy, he finished browsing his collection of Facebook greetings and well-wishes by texts, I tore him away to go get his work in.

"I must have a lot of friends."

Yes, you do. :)

The traditional Hornbacher's John Deere cake.



Hard work stops for no man.

 He's making incredible progress at Rehab4Life. The fact he's surrounded by women there is just PART of his success.  He's got a fresh sense of determination these days I haven't seen before. Even when offered the chance to take it easier due to a mild seizure, he declined. This is the boy who used to fake a heart attack to try to get out of PT, to the point his nickname was Fred Sanford.

"I'm having palpitations, seriously!"

Well, son... now I have them. You amaze me.

Off for the Birthday Burrito at Mexican Village.




There was cake and reflection once we got home. He bravely fought off a nap as he browsed more greetings on his iPad, then opened presents. A nice, taunt-laden Skype session with Big Sister, and he was all but out for the count. Old men get tired easily, he opined.

The common theme for me that last few days (Chick Magnet Birthdays are basically a week-long event!) was how many times I heard "I love that kid!" and variations on "His smile makes my day!"

Mine too. :)

I found a bittersweet birthday picture while digging for baby pictures to embarrass him with on Facebook. This is the last birthday celebration he got to have with his father.




Party at Nettie's Diner.

Steven lost his Daddy just over three months later. Now that he's growing into a wonderful young man, I just KNOW his Daddy is watching over him with pride just like this.

Just like the rest of us...

Happy birthday, Chick Magnet.

Thursday, April 3, 2014

I Was a Weird Kid Just Trying To Find God.

I was an odd little child.

I spent a lot of time outside, lost in my own mind. To anyone else, the loose piles of sticks in the trees, the circles of rocks in the dirt, and the drooping piles of weeds plucked from the empty lot probably looked like the work of vandals. To me, it was my Pippi in the South Seas shelter or my prairie Ingalls homestead, depending on the day. Having my own world was magical. I could bend it to my will and change it on a whim.

Yes, my other favorite way of staying off my mothers nerves was to bury my nose in a book. Those little house books pulled me in. I identified with Laura in many ways. ( I swear it wasn't a conscious decision to name my daughter Laura, but it may have stuck in my heart.) My older sister was sweet and very, very good. I... was not.  I was no juvenile delinquent by far, but I had a habit of asking bold questions that got me more than I bargained for at times.

You don't ask nuns why or parents a lot of "why" questions. That much I knew for sure. I honestly NEEDED to know where the rest of us came from if God made Adam and Eve, and they only had two sons. I truly HAD to know why mother decided we needed to "get out of her hair" when I hadn't TOUCHED it.  I hadn't even combed my own.

Ahhh, I get it now. Sit still and shut up. Gotcha.

I was thrilled when they made the Little House books into a tv show.  TV was almost as good as books most of the time. Those two grainy black and white channels were just made for a little girl to sit a little too close to and visit other places.

There came an episode that really solved all the problems in my 8-yr-old head. Laura's baby brother died, and all the grown-ups were sad. Laura figured she had let everyone down because she hadn't prayed hard enough and that made her baby brother not get better.

Being the half-pint problem solver she was, she set off to climb to the highest mountain, figuring God just HAD to hear her if she got as close as she could.

Well...THAT was my problem!

I hatched a plan.

The highest point in town was Water Tower Hill. That hill killed your legs if you tried to ride your bike up to the top, so it HAD to be close enough so God could hear me.

I had a list of requests in my heart. He needed to fix the sweet older lady, Mrs Sallee. She was sick. I didn't know her very well, but whenever I saw her, she hugged me with her smile. Her skin was darker than mine, which fascinated me,  and her hair was a wonderful grey cloud. God could make her better while he worked on my other stuff.

I wanted to live with my Grandma and Grandpa all the time. If God couldn't do that for me, then maybe he could arrange a tearful hug like Laura got when Pa and Mr Edwards came to find her on that mountain. I didn't know if that Jonathan guy who helped Laura was a man or really God, but I knew this was a plan that just couldn't fail. Old mountain man or no, I was going to be heard, finally. Things were about to improve in the Weber household, thanks to me.

I decided to bide my time until Saturday morning. My eyes popped open just as the sun started to show. My heart was pounding as I tried to time my breathing with the snoring coming from the other rooms so as not to wake my sister as I slithered out of our bed.

I tiptoed down the stairs, avoiding the creaky boards that might tattle on me, crept through the kitchen past the smelly garbage bag and the pile of dishes I might be clumsy enough to spill and sound the alarm.

My heart raced as I eased the screen door closed behind me, then the rush of freedom and purpose hit like a giddy wave.

Off I went to climb a mountain.

Up the soft, wet gravel street I flew. I was just like Laura, crouching to drink from the stream. Mine may have been a trickle of cold water coming from the melting snow drift halfway up the hill, but it was JUST like the show.

Seriously.

I huffed and puffed my way to the top of the hill, where the town's water tank reached up to the grey sky. For a minute, I considered trying to climb up a bit on the ladder, so I could be sure God got the best reception. On second thought... I'd just pray a little extra hard to make up for my lack of altitude. After getting stranded on that ladder trying to climb on the roof of the chicken coop, I didn't trust them anymore.

There wasn't a majestic rock like Laura perched on with her hair wild in the wind, her buck teeth shining in the sun as she set about making her case to the Lord about how she figured he should go about fixing things so her Ma and Pa could be happy again.

Ahh, a big slab of broken cement jutting out of the ground near the sturdy iron foot of the tower. Perfect!

It was a little damp from the mist, but I settled in to get to business. I addressed God politely (See? I can behave!) then started to ask for the things I had planned, but all that came out were tears. I managed to choke my requests out clearly enough, by the time my eyes quit leaking. I settled in to rest a bit before I went home to see if it worked.

I didn't have to wait long. Here came Dad in the car! That was pretty quick service. Why hadn't I thought of this before?

With a song in my step, I headed for the happy reunion just like Laura and Pa had. Things were going to be better now, thanks to God and Little House on the Prairie.

Hmmm.. he's pretty quiet.

Mom sure doesn't seem happy.

They wanted to know what the hell was wrong with me. Only someone sick and wrong would scare her parents like that. After Dad was done yelling, I think he went off to work, and mom thanked me... for getting her in trouble again.  I was always doing stupid shit that made Dad get mad at her.

I spent a lot of time in my room that day wondering how my plan had failed.

I guess it only worked if you had a REAL mountain.

I'm still a weird kid at heart.



Friday, March 28, 2014

Mind Your Own Business... Or Not.

It's hard to stomach reading the news stories about a mother, tucked away in a small town very close to my home, who quietly slid off the radar with her three children. One of them had a medical condition, which she decided not to treat. The others were kept home to be "schooled", although they were discovered to be neglected and illiterate... all the while bearing witness to the decline and ultimate demise of their big brother.

I make no excuses for her,but I feel a need to understand what had such a grip on her she lost her protective mother instincts, or if she ever had them.

I have friends who are sitting by their son right this moment, willing him to heal, wishing they could trade places with him just to ease his pain. Nothing could tear them away.

I've been there as well, watching Steven breathe with tubes and wires everywhere, making bargains of all kinds with a God I'm no longer sure even exists, just to see his eyes open and to have that smile back.

I've also been close to the edge of isolation and depression so thick my world got smaller and I built walls out of "stuff" because my life had become a barrage of missed sleep, fear for my son, surgery, trying to keep things running with the house, the vehicle, fighting the weather, wishing for someone to come riding to the rescue but not wanting to be dependent.

They were waiting for me to ask for help.

They didn't know how to insist.

They did what they could, as anonymously as a small town will allow. It hurt, but it was better than not caring.

In the most dehumanizing week I've ever experienced, I let my pride go and accepted help before I got so sick I risked the very meaning of my life because "Mind your own business! We're FINE!"

So don't mind your own business.

Butt in.

Try offering help, then insisting on it if you have to . Aiden had people who saw him fading, who say they reported the mother's neglect, but nothing was done.  Everyone is pointing fingers at each other. The air is thick with should haves and would haves. I don't understand giving up, throwing your hands in the air and saying "But I tried!"

Remember the girls held captive for many years, hidden in plain sight? That's big city stuff, not small-town stuff, right?

That's the kick in the gut.

We small-town folk are up in each other's business like no others. We have all the dirt... but... We're also very good at pretending and keeping our noses turned the other way. It must be a pride thing. On the brighter side,  people who don't even LIKE you will still line up to help when there's a need.

We know there's a need now, too late for Aiden.

It's not too late for who knows HOW many other children.

It's hard to imagine, looking back, that isolation and depression were so powerful they hid from me in plain sight. It's still hard for me to admit weakness, but I've learned to be honest with myself about my own needs.  I am truly taking care of myself and not just paying it lip service because I don't want anyone to know I can be vulnerable.

We made a fresh start by moving to where help is all around us, and weavng a strong support network that will be in place for the Chick Magnet long after I'm gone.I still prefer to do things myself, but now it's by choice and not because we have nobody else. I still feel shame in admitting I let things go, but it's being replaced with pride for having built something better.

In the end, Aiden's mother will get what passes for justice when there's nothing that can bring her child back. Hopefully, his brother and sister will get the help they need to try to grow through the scars on their souls.

The rest of us will move on.

 Some people will forget, others will resume pretending bad things don't happen right under our noses...

But I hope most of us will have an eye out and be more generous with the risk it takes to stretch out a life line when we see a child in need.





News Story about Death of Child












Friday, March 21, 2014

The Dangers of Corduroy

You learn something new every day.

Steven has specific taste in clothes, and the rules are quite rigid most of the time. His uniform of choice is usually jeans, a t-shirt (ALWAYS short-sleeved. I tried to put a long-sleeved one on him and was promptly shut down. ) and a long-sleeved denim shirt over that. Belt, sneakers and one of his John Deere hats.

Period.

He's been branching out a bit lately, first color-wise then fabric choice. He decided he wanted corduroy pants.

Cat hair magnets, I warned him. I was a bit sad he might never know the joys of the zoop-zoop-zoop of trying to get somewhere in a hurry in them, too. Such is life.

I resisted change this time.

I saw a pair on the clearance rack in Target a while back, so I surprised him. I figured for $8, we wouldn't be out much for trying. It wasn't my first rodeo buying him something he swears he NEEDS, just to have him change his mind.

I felt pretty smart.

Until this morning...

There are things you just don't think of when you're caring for someone with a physical limitation. Over the years, we've developed a smooth routine for getting ready in the morning, and we've found it works best to have him lie on the bed to get his pants up. We then swing him up to a sitting position, move to the edge of the bed again, and transfer back into the wheelchair. We're a well-oiled machine.

The corduroy had other ideas.

His trousers decided to cling so tightly to the bedcoverings the best we could do was manage the kind of dragging, shuddering forward progress that felt like a bare butt on a dry slip-n-slide.

We won.

Sort of.

I tugged and straightened as best I could, then we made the swing into the chair only to encounter the same issue in reverse as he slid (?) into his seat.

What goes up must come down. We had wedgies going in heretofore impossible directions.

At least Steven increased his vocabulary by listening to me mutter as I tried to keep his slacks from ending my chances for future grandchildren. His new phrase is "death by moose knuckle".

Corduroy, the devil's fabric.

Friday, March 14, 2014

Please Don't Call Me Courageous.

I've been chewing on a blog post I recently read, I know what the author means, and I know she only wants to offer her support to all the parents of kids with special needs. I get it. I appreciate it.

Now I'm going to pick it apart a little, because that's how I roll.

Click here for story.

"Having a child with a disability can be difficult. There are moments when you wonder if anyone will ever understand or get what it's like to walk in your shoes. You parent a child with special needs and sometimes you feel alone and invisible.
But you are not. Today, I want to tell you that I see you."

*waves* I see you too! Did you come up and say hi? Did you look my kid in the eye and say hello to him, or were you the one watching from a few feet away, with "that look" on your face? We know the look, the "Ohhhh, look! What a GREAT mother to deal with all of that..." one.

"I see you in the middle of the day, tired. Your hair pulled back in a ponytail and a stain on your shirt. You sacrifice so much for your child. You are beautiful."

I honestly don't see what I do as a sacrifice. I'm a mom. You're a mom, too... and if your child should, God forbid, become disabled due to illness or injury, would you see all the things you've given up- whether material possessions or time and energy for going out - as a sacrifice, or just chucking the unimportant stuff of life aside because you see just how little else matters because you HAVE your child.

BTW, I looked like that a lot of days before I had either of my children. Good to know I'm still hot stuff. ;)

"
I see you at the ballpark, cheering and encouraging the kids playing in the Little League. Yet, I know while you cheer your heart aches, wishing that your son could play ball too, not in a special league, but here, running and moving his body like those kids rather than spending his days in a wheelchair. You are courageous."


I'd be lying if I said I had never wished for more. My heart has been torn apart wanting Steven's pain and struggles to be gone. I don't think that feeling is a stranger, no matter what stage of life your child is in.  It comes and goes. But, please... just trust me that if you think I'm unable to find joy watching able-bodied kids at play without pining for what my son doesn't have, you really don't know us at all.

And while I'm at it... have you been to any of our "special league" games for any of the multiple sports Hope, Inc. has offered kids of varying abilities?

I know you probably haven't if you infer it's some sort of consolation prize. Our kids kick ass, thank you very much. They're also the courageous ones, but they're too busy being kids ripping around after the ball to have time to wear that crown right now. It gets heavy, and might get bent in the middle of that multi-chair soccer demolition derby cluster, lost on the sled-hockey ice or even shot down the ski hill.
"I see you at social gatherings where well-meaning people ask ignorant questions about your child or her disability, make hurtful comments or fail to recognize that your child is a child first. You don't get angry, you don't yell. Instead, you smile, answer their questions politely, and you educate them in a gentle manner, and thank them for their concerns. You are gracious."

Not always. I'd imagine this blog entry would be seen as distinctly NOT gracious by some. Sometimes, what looks like grace is a good poker face and the knowledge that most people mean well. The nasty people these days tend to hide on the internet, so satisfying asshole-smitings are few and far between.

I'm a mom, not a saint. I've done stupid things in my life, made poor choices I wish I could un-do. I'm going to give you an earful sometimes because my Sainthood Card got lost in the laundry last month, but I also have the tact to hold back and NOT blast you for saying something stupid, like how your kid's ear tubes were JUST like my son's brain surgery, so you know JUST how I feel.

I'm not responsible for the actions of my left eyebrow, though. Fair warning.

As for the rest of it, that's what all mothers should do... look out for each other.

I'll come to your able-bodied kids game and cheer embarrassingly loudly for him or her, if you'll come to see our game and do the same. There will be coffee. We'll both need it.

Deal?






Thursday, March 6, 2014

#EndTheWord the Morning After

Spread the Word to End the Word



I learned a lot yesterday. I wish all of it was good.

I hesitate to post about it, since it's so hard not to sound preachy.  I'll try not to cross the line.

Here goes...

Contrary to the beliefs of the people who cling so hard to their use of "retard", I don't advocate against the use of the word from some lofty perch where idealists rest between crusades to control the word and shore up for the next round of "yer so butthurt" or "you crybaby liberal" complaining.

 I don't have delusions or plans to inflict my agenda on unwilling people, depriving them of their claimed God-and-County-given right to say whatever they want to say. I'm not telling you WHAT to think, I'm just asking you TO think before you speak.

I come from the trenches of seeing beautiful, loving people marginalized and turned into a punchline. I've heard the taunts, and I've seen the wounds. For all the people who say others have to just get a backbone and stop being wimps, I challenge you to make it through the day in the place of one of the people you're putting down. Good luck with that. They have spines of steel.

When challenged to look my child in the eye and call him that name after claiming the high ground for using it, people seem to panic. I can't tell if it's a sudden attack of awareness or fear they'd have to squint with their surviving eye to get away when I was done with them.

"Oh, I didn't mean it THAT way!" or "It's a word that also means ________, so I don't get the problem with using it." or "I'm just JOKING!"

Okay, that's true. Words are what we make them.

Words can be roses or they can be weapons. They can be knives or bandages, smiles or fists, as you choose.

Words can be flung like the stuff in the monkey cage, stinking up your target for your own amusement. Just know you can't fling the feces without getting some on your hands.

Check yourself in the mirror.

Be careful who you touch.
























Monday, March 3, 2014

It's Kind of a First-World Problem.

Click here...  Watch Out World!

The success Steven's had in PT lately, culminating in some strong stepping on the bars confuses insurance companies.

In order to spring for a walker, they would have to declare he's no longer in need of a wheelchair and stop paying out for the power chair, any adjustments or replacements, etc. since they're considered "forever" in the minds of the person in the dark corner of BC/BS who thinks of things to deny and ways to complicate things.

Don't worry, he's GETTING the walker.

I'm just going to be adding a name or two to the "Eat my shorts." list from last post.

It just never occurred to me the power chair was an admission of resignation for life.  It's a wonderful "problem" to have so much hope he'll be less dependent on it in time.

Thursday, February 27, 2014

Don't Get Your Hopes Up.

I bite my tongue and fight the urge to parrot my mother's favorite phrase since having children of my own. I try not to say it to my kids, and I have to work even harder not to say it to myself.

I'm sure my parents had the best of intentions, thinking they were protecting me from disappointment by reminding me resources were limited. Life wasn't fair. Good little girls didn't always get the rewards they deserved. It was safer to not reach, don't dream, you'll fall...

Disappointments came anyway, of course, coated in the bitter taste of knowing I didn't try.  It was a comfy place to lean back on, pretending I didn't want whateveritwas anyway. Trying hard is for suckers anyhow.

Right?

The first kick of my daughter's life thrilled me in a terrifying way. My little flutter, safely tucked under my heart where nothing could get to her was about to fly. How was I going to keep her safe once she was out in the world? When they placed her on my stomach, and we took a long look at each other's outsides for the first time, I reached. I dreamed.

I flew.

SO many years of closing my eyes and holding my breath, so many times I almost grappled for her to hold her back, by instinct... stay close, don't go, it's safer here.

Guess what?  She flew too. She traveled away from me. She fell, she hurt, she loved, she lost and she came out on top in the end.

She taught me that if I was her safe place to land, flying was fun. THAT was my job after all that worrying.

I can do this.

When my son decided he was too ready to charge headlong into life, he landed in the middle of the consequences of my body not being strong enough to hang onto him until he was truly ready.

His own body tries to hold him down, to keep him from reaching, from trying... but the moment his doctor taught his Daddy and me a lesson by palming him like a basketball holding him up so he could feel what it was like to soar, I saw us trying to reach up with our hearts to snatch him back down to safety and understood in that snap of time I had my work cut out for me if I wasn't going to hold him back to keep myself safe.

The first time I had to hand him over for surgery, I wanted longer arms. Even though I knew, HAD to know it would be okay, I didn't know what to do with my hands without him in them. The unfortunate first person to tell me not to get my hopes up that the operation would solve the problem got pushed back.

That felt good. :)

You don't tell a mother not to hope when hope is all she has.

I'm still grateful for that doctor who waited until AFTER Steven started reaching and doing to tell me of his own uncertainty and initial pessimism. He declared open season on whatever Steven wanted to try. His words to little Steven as he combat crawled/slithered to the door to try to get the nurse to come back and give him another treat... "Go get 'em!"

Thank you, Doctor Allen. :)

To those who tried to tell me what goals were "realistic" and that I was in denial if I thought my son had the potential of yours?

Eat my shorts.

We're flying,

To all the other mothers of kids with their unique challenges, whether it's running, walking, wheeling or even trying to make words from sound or movement so the outside world can know the soul inside a body that wants to hold it back...

Go get 'em.

I'll stand behind you and we'll show whoever says "Don't get your hopes up." how it's done.

I've got my sassy pants on today.

Thanks, kids.

:)