...And in the air, the fireflies, our only light in paradise. We'll show the world that they were wrong, and teach them all to sing along; singing Amen I, I'm alive. Amen I, I'm alive...

- Nickelback, If Everyone Cared

For All The Right Reasons Album



And I'm singing Aaa-ayyy-men, I'm alive!







William Leonidas November 12th, 2009
My only regret is that I cried so many tears while I waited for you.


"...I'll try ~ but it's so hard to believe. I'll try ~ but I can't see what you see. I'll try and try to understand the distance between the love I feel ~ the thing I fear ~ and every single dream. I can finally see it. Now I have to believe all those precious stories. All the world is made of faith ~ and trust ~ and pixie dust. So I'll try ~ because I finally believe. I'll try ~ because I can see what you see. I'll try, I'll try ~ to fly..."

Jonatha Brooke "I'll try"


Fear thou not, for I am with thee; be not dismayed, for I am thy God; I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10




Now the word of the Lord came to me saying, "Before I formed you in the womb I knew you, and before you were born I consecrated you..." Jeremiah 1:4-5




For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. Psalms 139:13-14



Monday March 5th, 2010

So Why Stinkerie?



It's simple, really. It's the first thing I whispered against my newborn little Dumpling's temple as I held him alone for that very first time. "There's my Little Stinkerie." And all was right with the world as I brushed my lips across his delicate dewy soft newborn-pink skin and sniffed at his sparse smattering of downy soft hair. Corny and sappy, huh? I can't help it when describing my new Little Puppy. But don't get used to it - I have been told I am "irreverent."



Anyway, it just came out and he's been Stinkerie ever since. As well as Stink Pie, Stink Pot, Stinkey Pete, Little Stinks, Stinks, Puppy, Ducky, Baby, Baby Head, Baby Head Jenkins, Jack, Jack-Jack, Jackie Boy, Jax, Snork, Snorkis, Snorkle, Billy Boy, Billy Bob, Bobby Sue, Billy-Joe-Jim-Bob, Will, Willie, Willister, and the name given by my mentor turned friend Beth - Snake. When I write to her I call him either The Snakester or Slither! And of course, Dumpling, because he is my Little Dumpling - warm and soft and comforting. It's alright to combine comfort food with baby names, right? Have you ever watched the movie Where the Heart Is? If you have, you'll know why I mention this in my defense!



Long story short, you're likely to encounter any one or more of these names in a single post. Because I can. It's my blog!





Something to Consider

Bad decisions make good stories.

Something to Think About

With any pregnancy, there are concerns. With any child, there are worries. When you have a diagnosis of Down syndrome, you know what to worry about. You know what to look for. You have a plan of action. With your typical child, there is no limit to the things that can 'go wrong' or 'happen.' There's no place to focus your worry and concerns. 'IT' will always be out there, waiting. You'll always be on guard. Even when the child is 55 and has grandchildren. With Down syndrome we have a battle plan. With Down syndrome, there is a finite number of things that can go awry. With a typical child, there's isn't. It's a crap shoot. I'm sticking with the Ds and taking the other two back to the hospital for a refund.

Head Above Water


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Tuesday, January 11, 2011

You Just Broke Your Child. Congratulations!

This isn't an easy post to write. For so many reasons. But it's been bugging me, so I'll write about it. I found this post from Single Dad Laughing to be very, very disturbing. For a variety of reasons. I won't enumerate them. Just suffice to say that I read his very impassioned post several days ago, and it's still with me, still just really bugging me. That's the title of his post, and I copied it for mine.

I'd like to see what happened in the lives of that father and child directly before the scene in Costco. I'd dearly love to see what happened in their lives after they left the store. I cannot stress enough that there is nothing, n-o-t-h-i-n-g that the child could have done to deserve the treatment he was given, but I'd still like a little insight as to what came before. I'm hoping in my heart of hearts that while the father's behavior was extreme, it was just the steam blowing off that allowed him to not lash out and strike the child with the anger behind his words. I hope against hope that the writer of the post embellished his story just a little. I'm hoping that the dad took the child with a gentle hand by the shoulders while leaving Costco to keep him nearby and safe crossing the parking lot. I'm hoping that once buckled in, the dad said to the child, "I'm sorry I spoke to you that way. I was really angry and frustrated, but that doesn't make it okay to treat you like that. I'm really sorry. Can you forgive me?"

Sometimes parents get fed up. Sometimes children are difficult in the extreme. Sometimes parents in a snapshot of time are ill equipped to deal with it. Sometimes children push our buttons to the breaking point. Sometimes, the public has the front row seat.

Again, I am not trying to excuse the father's actions or angry words. But I have a Prest-O-Quick-O change artist myself. He's a tyrannical venomous little viper one moment, spewing bile every where, on every one and every thing, and the next moment he is timid and reclusive, the horns have retracted and the fangs have receded. The moments after a monumental melt down are just as likely to hold a kiss and hug from him as they are to announce he's going outside to play. Or to reveal the tension around his eyes, the pull at his mouth, and the first squeaky high pitched utterances that herald he's winding up for yet another Mt. Saint Helen's sized eruption. You just never know what you're going to get with him until it happens. I've been in the car with him, banging my head against the steering wheel to save banging his head against something. I've stood the physical barrier between him and The Oldest when she's determined to take his head off. He's a tough kid. She's a soft marshmallow. He moves her to violence in two point five seconds flat. He knows how to push the buttons of saints. I swear that God would cuss sometimes. But hey, God's only Son was Jesus, and He was perfect. God never had to put up with calls from Jesus' school saying to come get him NOW before they called the authorities. God never got a call from Jesus' first grade principal saying to come get him, that Jesus' teacher was leaving school to go to urgent care for injuries sustained from Jesus. Am I right? Sometimes, I think God could use a refresher course on really tough kids...maybe make us parents who love them a little thicker skinned, longer fused, slower angering, better equipped, more creative, more patient. The child maybe just a little less extreme. Then again, The Middle's tenacity will serve him well as an adult if he chooses to use it in the right direction.

During any given trek across the parking lot, my thoughts still muddled from banging my head against the steering wheel, he clings to my protective hand and transforms himself into the cherubic angel, looking like nothing more than a very well behaved child. You see, parking lots, and precious few other things, are his kryptonite. Once inside the store, safely away from the dangerous pit falls of the parking lot, he's just as likely to revert back to the whirling over stimulated dervish. Or not. Trouble is, the mom or dad, once inside the store, having had a full day of this prest-o-change-o crap, is still charged to full steam. The pressure doesn't ease just because Houdini has suddenly changed faces for the umpteenth time that hour! The on again, off again, rise to the challenge only to have to rise again seconds later, the volume of the inevitable blow up equal only in how minuscule the stimulus was, the relief when the crisis resolves, and then - oh! Wait! Charge up again, new crisis on the horizon! Whoooaaaa...hold onto to your hats, folks! It's gonna be a big one! Sometimes the escape valve on moms and dads get stuck. Sometimes it leaks out in angry words that hurt and mame tender souls. Sometimes, the public has a front row seat.

Some parents live in a constant state of hyper-drive. Constant. Even at rest. Have you ever been awakened at say, 2:38 am to hysterical and terrified panic filled screaming from your child's room, certain that Freddie Kruger is coming through the broken window with a 3' knife dripping with blood...only to arrive in the doorway to realize the child has not been beset by rabid dogs, he's just pissed! "I just woke up and realized that I forgot to eat dessert last night, and YOU didn't remind me!" Yeah, try getting that kid back to sleep for school in the morning! And should I even send him to school that day? Will my coffee even get cold before the school is calling? And even without the middle of the night tantrums, and sometimes genuine night terrors, parents of some kids don't rest. They sleep from sheer mental exhaustion, but they don't rest. Because tomorrow is coming. It's out there. And who really knows what it's going to hold? Is going to be a marathon of counting to ten or is it going to be "a good day" with few melt downs. Sometimes "good days" are measured by their simple lack of conflict. Happily, most of our good days now are simply that, really good days. Good not because they were not bad, just simply good because they were good. Sometimes parents wear down. And sometimes, the public has a front row seat.

Anyway...the point is that Single Dad Laughing's post resonated for me. How often does the volume in our home escalate? How often do frustrations turn into angry yelling? How often do disagreements between The Olders result in slapping at each other? Nasty names being thrown at each other? Promises to play or loan a toy being retracted in anger? How many times have I blown my cool and yelled? This house is loud. It's a simple fact. Kids playing, TV's blaring, noisy play, the dishwasher running, the phone ringing, mechanical toys buzzing, short fuses...there are a million reasons why voices get raised. Sometimes it's the only way to be heard. Frequently the buzz around this house is energetic and upbeat and has nothing to do with frustrations, but it's still loud. And the sixth request to take out the garbage is not going to be delivered with the same charm and easy tone the first request was made with.

So no, I am not that dad from Costco. There have been many, many times I've felt like him though, on the inside. Sometimes the front row seat that the public gets to see is of a tense Mom trying to keep The Middle within arms' reach instead of rooting through someone else's shopping cart, divulging every intimate detail of our lives to other shoppers waiting in line, or walking away with a stranger. Sometimes the Mom had just endured the fifteen minute ride to the store amidst howling, screeching and gnashing of teeth, because quite simply, Woody's hat fell down into the foot well where The Middle cannot get it until we arrive at the store and he can safely unbuckle to retrieve it. And that happened in the first two minutes of the trip. Pull over to the curb? Let the child retrieve the toy and proceed in relative calm to the store? Yeah right. ASD comes with an entire set of rules, written in a language entirely foreign to me, but that clearly state the The Middle shall not, under any circumstances, unbuckle the seat belt until he has arrived safely at his destination. It's simply not done. Ever. And there's my very personal favorite, seeing The Middle frustrated and just about to pop his cork and trying very hard to contain him and keep the lid on him, until we can complete even a brief shopping trip, wait in line, pay and get back out to the van where he can explode in relative safety. Yes, I know, I've heard it before, but seriously, if I have to leave the store every time this happens, every shopping trip will take 6 hours to complete and I will never get anything done. And he simply must learn how to control himself in public. How else is he going to do that except out in public? So yes, please do save that oh so helpful tip about leaving him at home with a sitter for someone brand spanking new to this life of high needs children who might actually believe that works!

And the author...he made some really exceptional points about how to nurture a child. About why it's so very important to nurture a child. About how really very easy it can be to nurture a child. No one sets out on this life called parenting with the aim of hurting our children. No one gets up each day and says, "Let's see what I can do to make my kid miserable today." But I'd also like him to see the other picture once or twice. I hope and believe that the really tough kid is the exception and not the rule. Sometimes the fact that the dad has not hit is commendable. Sometimes that the dad has not said more was an act that required all of his reserves. Sometimes, the fact that a parent has maintained their composure for the last five minutes when they are bursting at the seams, is a heroic measure. Because sometimes, some kids are really tough. And sometimes, the public gets a front row seat without having seen behind the scenes.

And the point in this post is not to exonerate the Costco dad. I'm trying to work out just exactly why Single Dad Laughing's post has rankled my feathers. And for all I know, the Costco dad really is just a big stupid jackass who should not have had kids. The point is that Single Dad Laughing wrote a post that has changed how I parent. There's a sticky note on my computer monitor now with one simple word. This place in our home is where the day either starts out rocky or sets sail for a smooth voyage. The alarm goes off and I start by getting The Girlie awake. Next I head to The Middle Little's room, and yes I am happy to see his face when he rolls his sleepy self over to look at me. He sees a pleasant smile and hears a pleasant wake up greeting. And he either stumbles out of bed and says "Okay, Mom" or ten minutes and ten more wake up calls later, I am bellering at him from the living room to get up. Now! Because by that time, that's where I am, getting breakfast set out, morning meds dispensed, packing lunches, getting breakfast ready for Jack, making sure backpacks and homework are ready to go and shoes lined up for little feet. He'll either bring his sleepy self out to start getting his shoes and socks on, or he'll emerge red faced and pissed off, already snarling, grunting, growling and grousing under his breath that he had to get up. You just never know. But the note is there, where I am likely to see it by that point, sitting in the chair by my computer monitor feeding Jack. A simple reminder. A simple statement. A simple pat on the back. A simple challenge to rise to the occasion and do better. A simple, quiet round of applause, that today, I will not start the day with My Middle Little being yelled at. Even when he clearly wants to yell at me first thing in the morning. He's a tough kid. And I love him.

And it's all up from there. Of course I want all of my children to feel bigger than anything life throws at them. But I have to admit, when it comes to The Middle Little, my concern about this is greater than with the other two, even Jack. He's a tender soul. I want to protect this narrow window of time while his Daddy and I are still everything to him. The Post-it note will be a gentle reminder about shaping his future. Because it's so easy to forget. It's so easy to say that things will be better tomorrow, next week, when his meds are adjusted again, when he's older, when he's matured a little more, when he has better control over his actions, over his words, over his abilities, over his impulses...but really, the time is now.

So I hope I haven't painted a bleak ugly picture of what our home life is. The difficult times are at long last the exception to the rule. There are daily blow ups to be sure, often more than ten in a day, while Our Middle figures out how to function in life with success. There are also plenty of times full of cuddles, of play, of kisses delivered in passing, of a hand reaching out to ruffle a Little head, of silly questions and sillier answers. Of silly stories with silly conclusions. Of serious questions from serious little boys who want, and get, serious answers. Of family movies where we all pile up on one couch with blankets and pillows and a huge dog or two thrown into the mix for good measure. There is singing in our home on a daily basis, almost always from The Middle Little, either songs he knows or is making up on the spot. There is coloring and drawing and cartoons and Lego building. There is laughter and banter and good times that I hope all of Our Littles will remember while they grow.

So...the Post-it note is there. Congratulations. Today I am not going to break my child!

Post Script: If you must, if you have misread the intention of this post, feel free to write me a comment to shred me. I am not defending the Costco dad. Bad parents are bad parents are bad parents...I've gotten to the end of this post no closer to knowing why Single Dad Laughing's post has rankled me so. But there it is. It's moved me to parent better myself, because sometimes that front row view the public has can serve as a mirror. I'm just sayin'...

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