...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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My Girlie

When my sweet little nugget of a Girlie was born I just could not believe how incredibly blessed I was that this sweet miraculous tiny little creature was mine! That The Beloved and I got to take her home to love forever. We were sure she would be Our Only after all the fertility issues.

She has quite the story to tell her kids someday. We'd done our course of fertility treatment. We measured various things. We watched. We had an ultrasound to tell us when. Okay and by "we" I mean me. Men usually get off pretty easily in this treatment thing. So on the weekend that the doctor said to try, we did our thing. And ten days later I'd had a serum pregnancy test from my OB. It was negative. A few days later I still hadn't started my period, and I mentioned to my excellent friend Bits that I kept feeling a gush, like I'd started. She got that look in her eyes. I didn't know what it meant, but having already had two of her own beautiful babies, she knew all about that tell-tale gush thing.

Since I hadn't started I decided to do just one more test. We were at work, and hospitals being more liberal in those days, and having a friend in the lab, I decided to draw my own blood and sent it down. And when I say I drew my own blood, I mean just that. I am needle phobic. Getting the tourniquet on is the hardest part, and actually sticking myself is way preferable to the nausea, anxiety, giggling, crying and stomach turning that happens when someone else comes at me with a needle. (Just ask the lab supervisor who insisted I not draw my own blood. Once I'd thrown up all over the front of him, even into his pocket protector, just watching him come at my tender flesh with that needle, he gleefully handed everything to me and said, "Knock yourself out. I'm going to go clean up.") I hand delivered my blood to my lab friend. A while later she called me back. I saw the lab ID in the phone window and was just praying for good news. It was my friend. It was negative. I hung up and stood there numb. Then again with the phone ringing and the lab ID in the phone window. I answered. It was my friend, "Can you come down here?" So I did. My friend wanted to draw blood and try one more time. So we did. And she got the same result. She'd said that when she hung up with me the first time she went to toss the test cam into the garbage - and saw a faint blue circle! Just like the faintest of blue circles in the second test cam. We'd done it! I was pregnant! The Beloved and I were going to have a baby!

I marched back up to ICU and banged on the door of the isolation room Bits was working in, garbed in the full protective gear and face mask. She looked up from what she was doing to see who the heck was making all the racket. I held up the two test cams. She didn't know what they were. So I gestured a plus sign and a round belly motion. I've never seen someone remove isolation gear and do a clearing scrub so fast in my life.

Then came the high blood pressure and the meds. Bits went with me to every OB visit as The Dear Daddy To Be would still show up to work every single day even if he had died the day before. I look back on it as a pretty idyllic pregnancy. I was excited when I had my first bout of morning sickness and subsequent light headedness. I was absolutely giddy the first time I actually threw up. Then at 17 weeks my OB doctor showed me a print out of my funnel shaped cervix and my Girlie's head trying to protrude through it. I had a cervical stitch placed in the morning and went home from the hospital after two days to strict bed rest.

Almost to the end of my second trimester I hemorrhaged for no apparent reason. The Beloved was out of town. I'd gotten up to pee and found blood. Lots of it. One frantic call to my friend Miks and a midnight ride through quiet streets later, it was established that The Girlie was still safe and snug, and absolutely no indication of where the bleeding came from. I was monitored for a few days, the bleeding stopped and we all went home.

My baby shower, to me, was the event of the century! So much so in fact that I didn't even realize that it was my birthday the next day until I had to write a check at the party rental place. I said to Miks, "Oh my goodness Miks! Today is my birthday!" She says, "Oh that's right! I completely forgot!" Then we giggled like school girls when I said "I did too!" So we went out to lunch!

Three days before my due date the doc decided he didn't want to wait this baby out. He wanted her delivered before anything could go amiss. I am glossing over much of my health history for the sake of brevity. Because I'm known for that. Brevity. Yeah okay - not so much!

So bright and early the next morning, Bits met The Beloved and I in the maternity wing at the local hopspittal. A pitocin induction was initiated. And it wasn't fun! And I hadn't progressed after 4 hours. So they broke my water. And turned up the pitocin every 15 minutes for the next 6 hours. Very Not Fun! Eventually it was decided that if I had an epidural to put me out of my misery, maybe I could relax enough to rest and dilate.

It was heaven! I do not comprehend why anyone speaks out against an epidural! And then it migrated and I was back to slamming contractions that lasted up to 6 minutes with a 2 minute break in between...and got me absolutely no where. I was still stuck at 4cm dilated for the last 6 hours. The epidural was replaced and I slept for a little while. And then the baby's heart rate started doing scary things and I was writhing in pain. The pitocin was turned off and I was whisked into to OR, quickly prepped and readied for a c-section. After 16 hours of hard labor. Dang! I remember giggling about how badly the prep tickled. Someone should have been clued into that fact.

As my doctor started, I was waiting for that awful cautery smell. But I didn't smell it. I felt it! And I spoke up and said "I can feel that! It really hurts!" More meds were given. Then more. By the time I was trying to claw my way out of the restraints at my arms, my daughter's head was sticking out of my incision. I couldn't see this of course, I just couldn't understand why My Beloved and Bits were letting them do this to me and how I could have been so bamboozled by the OB doc every one loved. Clearly he was trying to kill me to steal my baby and sell it to someone.

The way I remember everything after my first utterance of pain was that I issued one long primal scream of pain, terror, rage and betrayal. I was finally getting to have a precious baby of my own and suddenly I was being tortured to death so they could steal the baby and probably leave me to die. And then utter silence while people around me worked.

The doctor, Bits and The Beloved all tell a different story. And since their stories all match, and mine is very bizarre, they must be the accurate historians. Both The Beloved and Bits say that from my first scream, the room broke out in utter chaos. People came running into the room, summoned by my incessant screaming. Meds were given. Then more. Then still more. Bits is also an ICU nurse and as the anesthesiologist called out each med, she wrote it down. The Beloved was laying across my chest trying to hold me down. There was no room for Bits to get anywhere near me as people were plastered all over my body trying to contain my bucking and thrashing. The doctor and his assistant were screaming at the anesthesiologist, The Beloved was screaming at all of them. I was just screaming. Any thought of maintaining a sterile field was long gone. Eventually I woke up in recovery. The only resemblance of my drama to theirs was that I had survived a cesarean section with no anesthetic.

But the story didn't end there. The baby was out and I still was not. Eventually I was put under general anesthesia while they sewed me up. They brought me "up" so I could see my baby, but as any surgical professional will tell you, what you get going under is what you get coming up. I woke up screaming and they put me back out. Apparently The Beloved was sent to the nursery with The Baby. Bits spoke up and said, "Her sats are dropping." Drapes were ripped away. No chest movement. No breathing. I was manually "bagged" while my heart rate dropped. They were going to kill me after all. And steal my baby. The anesthesiologist had given me so many drugs before she did the sensible thing and gassed me. Now they had to reverse all those agents to get me breathing again to keep me alive. It was a rough and terrifying ride. I do have a vague detached memory of a baby screaming and Bits telling me it was a girl, she had brown curly hair, and she looked just like her Daddy. All the meds I'd gotten during my crash and burn cesarean should have kept me pain free for the rest of the decade, but all the reversal agents they gave me to get me breathing again reverse the narcotic effects of opiates. Once I'd heard what Bits said, that pain slammed into me again and they had to put me back under until the Narcan wore off and opiates would once again be effective. And then I was gone again until recovery. My Baby and the Beloved were both gone. Bits was there and she comforted me while I sobbed the heart wrenching tears of a woman who has just been tortured in a living nightmare and is heavily drugged. You can reverse an agent, but you cannot remove it from the body once it's in there. It will do what it is meant to do, in tandem with the reversal agents. Poor Bits. She had her hands full with me!

When I finally got to see My Baby Girl it was when a nurse wheeled me through the nursery. I touched her feet, her tummy, heard her plaintive cry that sounded just like me. And I knew she was mine. Who else could have that cry but my very own baby. The next few days brought a lot of pain, a lot of snuggling and bonding with Our Girl and a raging infection for me. The anesthesiologist came by to say that she didn't know what had happened. She's never seen that kind of reaction before. My beloved OB however knew exactly what had happened. The epidural was incorrectly place and she hadn't properly assessed me before giving him the go ahead to cut. Evidenced by the ferocious tickle of the prep after the epidural was placed.

I've tried a few times to edit this post to reflect some of the absolute magic I felt while pregnant with my daughter, and once again I have failed. I'll keep trying maybe. Anyway, since I've detailed the song that never fails to bring tears to my eyes with My Pod-Apple, (Why My Beautiful Disaster?) I must detail the song that always makes me think of My Girlie and always brings me back to her warm little body snuggled into mine. It's by an unlikely source for my favorite lullaby, but there it is. Eventually I will 'know' my song for William. Here is My Girl's:

I Don't Want To Miss A Thing

I could stay awake just to hear you breathing
Watch you smile while you are sleeping
While you're far away and dreaming
I could spend my life in this sweet surrender
I could stay lost in this moment forever
Well, every moment spent with you
Is a moment I treasure

(Chorus)
I don't wanna close my eyes
I don't wanna fall asleep
'Cause I'd miss you, baby
And I don't wanna miss a thing
'Cause even when I dream of you
The sweetest dream would never do
I'd still miss you, baby
And I don't wanna miss a thing

Lying close to you
Feeling your heart beating
And I'm wondering what you're dreaming
Wondering if it's me you're seeing
Then I kiss your eyes and thank God we're together
And I just wanna stay with you
In this moment forever, forever and ever

(chorus)
I don't wanna close my eyes
I don't wanna fall asleep
'Cause I'd miss you, baby
And I don't wanna miss a thing
'Cause even when I dream of you
The sweetest dream would never do
I'd still miss you, baby
And I don't wanna miss a thing
I don't wanna miss one smile
I don't wanna miss one kiss

Well, I just wanna be with you
Right here with you, just like this
I just wanna hold you close
Feel your heart so close to mine
And just stay here in this moment
For all the rest of time

(Chorus)
Don't wanna close my eyes
Don't wanna fall asleep
'Cause I'd miss you, baby
And I don't wanna miss a thing
'Cause even when I dream of you
The sweetest dream would never do
'Cause I'd still miss you, baby
And I don't wanna miss a thing

I don't wanna close my eyes
I don't wanna fall asleep
'Cause I'd miss you, baby
And I don't wanna miss a thing
'Cause even when I dream of you
The sweetest dream would never do
I'd still miss you, baby
And I don't wanna miss a thing
Don't wanna close my eyes
Don't wanna fall asleep, yeah
I don't wanna miss a thing
I don't wanna miss a thing

-written by Diane Warren
quoted from the version performed
by Aerosmith, 1998