Monday, September 30, 2013

Help, don't harm.

 I planned on a light-hearted post about the Chick Magnet's weekend, and I promise it's still coming, but I can't get this out of my head.

I've written before about trying to support other parents and not shake a critical finger at them, but this author is getting a different kind of "finger" from me today.

I hate to even give the writer more clicks, but please note the pages of comments from others who call her out. I hope she reads them and gets some insight and education. Somehow, I doubt it, since she didn't bother to follow up.

That father did exactly what he SHOULD have done in his situation. There are far too many headlines about parents or caregivers who fail to reach out for help, and the children pay the price.

Please share THIS link far and wide. Let's throw out a lifeline where we can.

Saturday, September 21, 2013

Stevenism of the Day

"You know what one of my favorite things from my childhood is?

Tattling on my sister. That was great stuff. "

He isn't kidding. When Laura watched him while I worked, he was usually asleep when I got home. The first breath he took in the morning was the beginning of a narc-fest you wouldn't believe. "She wouldn't get me my toy, she was on the phone, she didn't give me a turn on Nintendo, she wouldn't read me an extra story, she...."


Sunday, September 15, 2013

That will NEVER happen to me!

Oh the sweet, blissful ignorance of being able to believe that to be true.

Tonight, a young boy in my town went missing for the second time this summer. He's a bright, wiry, quick boy who happens to have autism.

It makes my heart swell with pride to see the community rally to try to bring a happy resolution to this and other missing kid stories. Social media have become a powerful tool to bring us together to offer whatever assistance we can.,

Sadly, the lucky and some of the child-free take the chance to jump up and pound their chests and wag a finger at the parents who are already hurting.

I know both sides. I used to be one of them.

I had all the answers. They JUST need to... and they SHOULD... because a hundred perfectly good reasons why bad things happened to OTHER parents was a warm shield  to ward off the notion that we're all vulnerable. If we can find some flaw in the other parent, it means we're safe. After all, anyone can see they're just careless. IF they'd only...

Then, a tiny ball of determination came into my world too soon.

Once you've spent some quality time wagging that judgy finger at yourself for not knowing to look for the signs, not being perceptive enough to understand what your body was doing, for being too afraid to ask more questions, for a hundred other hindsights that may or may not have made a difference in the end... you're slower to throw rocks at other mothers. They sometimes bounce back and hit you in the heart. The path of parenting a child with extra needs is rough and hilly, with plenty of vantage points from which to examine every decision you ever made in painful detail when you look back.

For all the people who cry out for young Draven's parents to lose custody of him, that they should "watch there dang kid harder" and "They need to NEVER let him out of their sights"... I truly hope you never find yourself in their shoes, on that path.

I'd love for you to take a moment and at least imagine the trip, though.

Monday, September 9, 2013

Inspiration Through Beer Commercials.

Sometimes, as the mother of a young man with disabilities, I feel like I'm watching a lot of  life through a weird filter. We may be looking at the same picture, but the colors are shifted. Some of it comes from spending Steven's formative years in a very loving small town, but one where there were no other children in chairs. I had everything in common with the other mothers, and nothing at all. It depended on the day.

I've gotten used to the feeling of "Same planet, different worlds."

It hit me again last week because of a beer commercial.

I've seen this ad shared over and over on Facebook. "Inspirational" and "Beautiful!", guaranteed to make one's heart melt.  If you haven't seen it yet, I'll wait while you watch:

Now, I'll try to explain why I had the opposite reaction... or at least give it a shot. (Pun probably intended. ;)  )

I'm watching... and loving the game. The voiceover about dedication, loyalty... yes, you have me! Then, all but one get up out of their chairs as the voice says "Friendship." (Wompwomp, stomach drop) The choices we make reveal the true nature of our character...

That's when it hits me they're extolling the qualities of the guys who have the choice to get up and walk out of the gym, not the guy who ruled that game who can't.

You see, from MY vantage point, I see my son get up every day and take on the world. Through all the indignities, pain and frustrations of his day-to-day life, he smiles and pushes ahead.  He rides his stylish John Deere chariot around and over obstacles that would leave me exhausted, bitter and ready to call it quits.

And still... he smiles.

He's my strength, my determination and my teacher. To his peers, he's... well, he's just Steven, and that's wonderful. That's what friends ARE. They just want to be around you and you watch out for each other. The chair is the vehicle, not the man.

There's my struggle with the "inspirational message" aspect of the ad. Without the smarmy voice-over ... buddies having a blast in a way they can all enjoy. WOOT! Game on!

With it? It becomes a patronizing message of it taking sterling character and dedication to be a good friend to someone in a chair.


Friday, September 6, 2013

Origins of the Chick Magnet label and bounty hunting.

Steven was born flirting. I'm convinced that's why he was premature. He was in a hurry to get to the nurses.

He started to get a reputation early on, thanks to his long eyelashes and toothless grin, and it seemed we were always finding, or being given, shirts with some variation of "Chick Magnet" on them, and it stuck. The red one in his picture was his absolute favorite. It was dubbed his "lucky shirt" after a flock of nurses descended on him in the hospital cafeteria to admire it. After they moved along, Steven gave me his waggly-eyebrow look and declared "It worked!"

Incorrigible. ;)

After a particularly rough year healthwise, the second neurosurgeon in as many years to save Steven's life and Steven's favorite nurse, Peggy, wanted to help him get his Make-A-Wish dream. Steven heard ideas from all directions, but there was only one wish for him.

"I want to be a bounty hunter."

At that point, Steven had three favorite shows he would watch over and over again. Cops, Mister Rogers, and Dog the Bounty Hunter. (One of these things is not like the others...  lol) It gave me psychological whiplash at times... "People can like you JUST the way you are...Can I give you a cigarette? ..FREEZE MOTHERBLEEPER!" *sigh* Never fear, to this day, he censors himself by actually bleeping himself out loud. :)

I wish I had video of his face while he watched, the glazed eyes, the unbridled admiration and random smooching noises. That's how I knew when Beth appeared on screen. Steven loved her with the enthusiasm usually only reserved for the older red-haired girl at school, Whitney. It was the kind of love that left him dazed and giggly, the kind that cartoon eye-spinning and floaty hearts was made of.

They gave him three questions to ponder while choosing his wish:

If you could be anything in the world, what would you be?
If you could do anything in the world, what would you do?
If you could go anywhere in the world, where would you go?

His answers, delivered with the look and tone of "Hello Captain Obvious." were:

A bounty hunter.
Be a bounty hunter.
To visit Dog and Beth and be a bounty hunter.

He was hard pressed to come up with a second choice in case it just couldn't happen. He's a man who knows what he wants. We're lucky the people at Make A Wish and A&E were able to work some magic.

We got the call to pack our bags and get ready to go to Hawaii, and Steven was speechless. That's as rare for him as for ME.

The Lucky Shirt had to have a place of honor in the suitcase. It was going on this adventure.

There aren't a lot of photos of the journey from north central ND to Honolulu, mostly because I was pretty busy trying not to have any newsworthy moments navigating four airports when we had not only never FLOWN, but it just happened to be my Big Phobia. Clearly, I survived, but I have quite a few helpful suggestions for the major airlines. Only a few of them are painful and/or physically impossible. (I'll give you three guesses what I'll end up ranting about on here sometime. Smooth, right?) Steven only stopped grinning when he was sound asleep, and even then... happy.

Just a bit of our visit. It was all worth it. :)

Make A wish is an awesome organization. If you get a chance, seek out your nearest chapter and offer to lend a hand.

Tell them a bounty-hunting Chick Magnet sent you.

Family picture at the bail bonds.
The happiest Chick Magnet
Steven's luau friend, Kehau.

Wednesday, September 4, 2013

Stevenism of the day.

"My leg kind of hurts, and it goes to my hips. They don't lie."

Annnddddd cue the Shakira-esque butt wiggling.

But what do I say to someone in a wheelchair?

You know what makes me sad?


Not the kind you're probably thinking of, the mean, ugly ones... but the ones I hear the most often. More often than not, I overhear people talking about how cute Steven's John Deere chair is, how funny his shirt's saying is (He has an extensive collection of t-shirts, as you'll see over time!) or just how sweet his smile is.

Come on over and say hi. Tell him. :) It's a shame to waste a perfectly good compliment, isn't it? I don't always have the chance to let you know I overheard and draw you into our conversation, so you'll have to speak up.

This brings up a subject some people freak out with nerves about... "What if my kid asks a rude question?"

The answer? We'll live.

I've seen mothers turn every shade of red, but a spontaneous, honest question sure beats a child being shushed or hurried away. Even if Steven's not feeling up to saying anything, I'll bail you out, I promise. All I ask is that you not nudge them forward to ask "What's wrong with his legs?"  unless you won't mind me sending them back with instructions to go up to a relative and ask a personal and/or potentially dirty-sounding question in their outside voice at the Thanksgiving Dinner table.

*waiting for hate mail*

Seriously, bring them up... but to say hello and chat a little. Show them that a person in a chair is a person like any other by the way you act. I've got your back. Even if the Chick Magnet has his eye on a girl, or is in a hurry to go check out all the gadgets in electronics, he will still take a minute for the kids to check out his controller or show them how he can race. If he's having a day where he's not feeling up to questions, I'll give your little ones a nice, age-appropriate explanation of why some people need wheelchairs.

Many years ago, forever ago... but yesterday... I had no idea how to answer those questions either.  What I know now is what I've learned from being head over heels in love with a 5 lb, 3 and 1/2 oz. bundle of emotions I didn't think I was equipped to handle.

The more Steven endured just to fight back from being born too early, the more I found myself rising to my job as his support. It's funny how that works. If HE could face pain and fear with a gummy little lopsided grin, his Mommy had to keep up!

I've been trying to keep up ever since.

It keeps me moving faster and in wilder directions than I ever would have gone alone. My one wish would be for him to be healed and never suffer again. Those of you who know me know what my Grandpa said about wishes. ;)  With that in mind, I wouldn't have missed this rollercoaster ride for anything in the world.

So... what DO you say to someone in a wheelchair?


"Nice wheels!"

"Hey there, good-lookin'"

"Can you parallel park that thing?"

"Nice weather..."

"What's new?"


                                                                      The End

Tuesday, September 3, 2013


I'm new. Be gentle with me. :)

This will be a random compilation of "Steven Stories" as requested by his admirers, with a healthy dose of  my rather warped sense of humor. You've been warned. So has my daughter, Laura, who is bracing herself for the potential embarrassment of a Mom with a blog.

Most of Steven's stories will involve women in some way. He's been a Royal Romeo since birth, charming nurses, making them cry and learning fairly young the art of waggling his eyebrows and winking.

Welcome to our life.

This is the face of danger at age 4.

                                                                                                                                                                                                                                     Danger, the later years?