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.


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.


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.