...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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Why My Beautiful Disaster?

Did you arrive here from BabyCenter.com?

If you have come to my blog in response to an invitation I've sent, or because I've listed my blog at the bottom of my posts, I feel obliged to explain my screen name "My Beautiful Disaster." First and foremost, it is not a reflection of my son with Ds and not why I chose that moniker. He is my Beautiful Wonder and it is quite clear that we all adore him.

I started using the screen name My Beautiful Disaster many years ago to ensure anonymity and also because Kelly Clarkson's song Beautiful Disaster spoke just so perfectly of rough times we had been having. Of the beautiful pain in every moment. Beautiful and terrifying yes, and rough times in deed.

Shortly after Beautiful Disaster debuted, My Middle Little embarked on a journey that would change all of our lives and frankly I wasn't sure that at the end of the day, he or I would survive it. The diagnosis of autism was still far, far off. (Incidentally, while I type, Jack is in his usual place lying in my lap under the keyboard, doing head lifting practice, trying so hard to get his mouth up to my elbow! You go Jack! I can feel the slobber now!) But back to The Middle Little.

I'd put him to bed one night a happy, normal, bright, vivacious and sunny toddler. What we awoke to just a few hours later was a whole different child. What followed were days of screaming, frustration, dancing for hours on end while balancing on his tip toes and loudly singing the tune to the Vonage commercial "Woo-hoo! Woo-hoo-hoo! Woo-hoo! Woo-hoo-hoo!" To this day I cannot hear that tune without becoming physically ill. He was awake for 21 hours a day, alternating between absolute sheer jubilation, every amount of joy exponentially magnified to the power of ten, interrupted with bouts of complete and utter despair, heart wrenching sobbing, sorrow like I've never witnessed. If a child could writhe and gnash his teeth, that's what he was doing while he was in his depths. The three hours he slept were punctuated by waking every ten to fifteen minutes in a rage, angry and pissed off over something in a dream, sorrow over a lost or broken toy, the fact that he'd had a cookie instead of a cracker, you name it. It had him angry. It had him pissed. It sent him from a deep exhausted sleep into wide awake in a total rage. And then he would drop off to sleep again. For another ten to fifteen minutes.

My Girlie had a maintenance appointment three days into my Middle Little's first "break" as I've come to call it. Thank God above. Her doctor addressed her minor needs and spent the remaining hour assessing my Pod-Pie. I say thank God because there are no psychiatrists or even behavioral specialists in this entire valley who will see a pediatric patient. Pediatricians will not dive into uncharted territory, no, they just write referrals that can never be fulfilled in this area that they are quite aware is bereft of special needs doctors. He was just 2 years and 7 months old at that first visit while he stood all of three feet tall in front of the doctor's desk and wagged his finger at the doctor and angrily told him 'where to go' in no uncertain terms with a vocabulary that could rival most adults. I don't mean cuss words...the child has a phenomenal vocabulary. The doctor wanted to immediately hospitalize him to keep him from dropping dead from exhaustion. But he decided with my absolute refusal to do that, to send him home with medications because I was by then a seasoned ICU nurse and could monitor him closely. I had to call him twice daily to "check in."

So we went home with a few prescriptions. One to control his rage and despair, one to help him sleep. And they seemed to work exceptionally well for a few days. Then we'd get a dose adjustment and they worked well again for a few days. More adjustments. Different meds altogether, the dose adjustment trial period, etc. With his first med I was to give him one tablet in applesauce every four hours, and increase it by one tablet every
dose until he was able to maintain reasonably good control of his emotions for the entire four hour period. Day three saw us still adjusting. At the 3 1/2 hour park, he came and laid his little head in my lap and said words I'll never forget. "Mommy. I need my me-icine." What? He knew I was drugging him? I asked what medicine, as he'd only been familiar with cold medicine or the occasional liquid antibiotics for a few ear infections. He looked up and said, "Oh Mommy. You know. The me-icine ina app-oo-sauce." Okay then. So I gave it to him with a sip of water instead. He climbed up into my lap until they kicked in and he was good to go in about ten minutes. "I'm better now Mommy."

I'd love to say it was smooth sailing from there, but it was far, far from that. I remember trying to explain to their father what had happened and why his baby boy was getting psychiatric medications. I tried to explain to Mom and Dad what had ensued over those few short days that had the doctor so alarmed that he said if I couldn't successfully treat him at home, he'd have no choice but to hospitalize my baby. My baby. And they regarded me with disappointment and something much akin to contempt. Neither their Dear Daddy nor their grandparents could understand any of this because they hadn't seen it. The Dear Daddy was often out of town for work and the grandparents visited frequently, but I'd been refusing their visits for a few weeks while we were going through the absolute hell that was our new life. Only I, The Other Mommy and his doctor had been witness to the mayhem and lived to tell the story. No, to them, until they got to see it for their own eyes, the problem was clearly my poor parenting skills. I mothered him too much. I spoiled him. I didn't discipline him enough. I was too lenient with him. I babied him. What? Who exactly were they talking about? Surely not the mother they'd witnessed up until now.

No they were not witness to the times I had to pull off the side of the road and stand outside the car because I couldn't take his outraged screaming. The times I'd deadbolted the front door so I could walk around the front yard to talk on the phone to my employer, and they could still hear him over the phone raging inside the house. The times The Other Mommy would call me at work as many as five and six times a shift in tears because this experienced, well versed in special needs kids Mom was at her wits end. They did not know the times I paid the neighbor girl $40.00 to stay with him for an hour so I could make a mad dash to the grocery store. They did not know the terror that could be struck into a mother's heart over the tiniest little change in pitch in her child's tone (Auntie Bits, are you listening?) that signalled a screaming two hour long tirade of inconsolable crying and violent raging. At home. In the grocery store. Riding in the car. Watching TV. Playing happily. Enjoying an ice cream cone. From a sound sleep. It could and did happen anywhere at anytime without a moment's notice or any provocation.

They weren't there when I'd finally reached my breaking point. I'd returned home exhausted after dropping him off at kindergarten and could hear the phone ringing incessantly. Ring. Ring. Ring. Ring. Answering machine on. Click. Disconnect. Repeat. It was the school calling. He'd assaulted a teacher and two other students. He was being detained in the school nurse's office. He should be in the Principal's office, but he'd had to take over his teachers class so she could go to urgent care for her injuries. Inflicted by my then five year old. Pick him up immediately. He'd been suspended for the third time in one month. No, they were not witness to me falling to my knees on my living room floor and screaming at God. I'd demanded to know, "Is this Your idea of a joke? I prayed for a baby, and this is what you give me, this menace to society! Is this fun for You, watching me struggle while my family falls apart and You in Your Heaven do nothing to help us? Is this the price I have to pay for my sins, the sins of the father being visited upon the child? Do You not hear my prayers? Are You even listening? Is this my penance, watching my child struggle and suffer? Are You really a just and loving God, or is it all about "vengeance is mine?" I vented my rage for a good ten minutes. My anger, pain and the injustice of it all. I railed at God, spewing all of the pain in my heart, my venom, using every swear word in my repertoire, ending finally with a demand and a plea. "You gave me this child now show me how to mother him!" And a heart rending, soul clenching "Please!"

Shortly after that he was finally diagnosed as autistic. Meds were changed and worked better to help him control himself. He has matured and is able to remove himself from potential situations. He is once again a happy, bright, sunny and vivacious child. He still has his moments (and they are literally moments, instead of days or weeks or months), but they are fewer and further between. He is my boy. And when he has those rare days where he feels like a disaster, he is still a beautiful one. God did indeed show me how to mother My Middle Little. He placed tools and help in my path. He gave us people who knew what to do. Teachers who tried harder to see the struggle before it was insurmountable. Friends who have wearily trod down that same path. Therapists who taught him a better way. Ways to help him succeed. People who cared and understood. Some people who truly did not understand, but did care and care truly! (And God in His grace did not strike me down or send plague, locusts or famine upon my house for yelling at Him! Not even zits!)

I believe that all of my days have been ordained for me. Usually. Sometimes I doubt. But that's okay, because God knows this about me already. And He knew I would one day in mid January of 2007, scream at Him and come away cleansed. I do not believe that God is a puppeteer, pulling my strings to make me dance. He gave me free will to love Him or not. He gave me a daughter to either learn how to educate  or to hurt her with words like stupid, dumb, idiot, retard. She got some A's on her last report card and she loves school now! He gave me a middle son to either seek out the key to unlocking his world, or to abuse and beat to death in my frustration. He will tell you himself, "I'm happy! I love being a child!" (Leave it to him to say "child" instead of "kid!") He gave me a second son to either love and cherish, or to discard as so much useless flotsam. He can't speak yet because he's just under 6 months old, but He has blessed my life with this child in ways I am just beginning to appreciate.

The whole point of this post is to refute the idea that I may consider any of my children disasters. They are wonderfully and fearfully made. And there just happens to be a song that I heard one day by a beautiful young lady who touched my heart and lent balm to my soul when it felt like it was bleeding.

And now when I hear Kelly Clarkson's song, I still tear up up in places remembering the Disastrous days, but I still love the song for describing the Beauty that is my boy! I believe it was written for a lover, but it applies more than perfectly to my happy, loud, noise-with-some-dirt-on-it whirling little dervish!

He drowns in his dreams,
an exquisite extreme, I know.
He's as damned as he seems,
and more heaven than a heart could hold.
And if I try to save him
my whole world would cave in.
It just aint right. Lord, it just aint right.


chorus
Oh and I don't know,
I don't know what he's after.
But he's so beautiful.
He's such a beautiful disaster.
And if I could hold on
through the tears and the laughter,
Lord, would it be beautiful?
Or just a beautiful disaster?

He's magic and myth.
He's strong is what I believe.
A tragedy with
more damage than a soul should see.
But do I try to change him?
It's so hard not to blame him.
Hold me tight. Baby hold me tight.

chorus

I'm longing for love and the logical,
but he's only happy hysterical.
I'm searching for some kind of miracle,
waiting so long. I've waited so long.
He's soft to the touch,
but frayed at the ends, he breaks.
He's never enough,
and still he's more than I can take.

chorus

He's beautiful.
Lord, he's so beautiful.
He's so beautiful.

written by Matthew Wilder and Rebekah Jordan
quoted from Kelly Clarkson's live performance,
not the lyrics on her artwork sleeve.

And there you have it...My Beautiful Disaster.