...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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Saturday, April 9, 2011

Fastest ER Trip Ever

Yesterday morning The Little Jack-Snack woke up with some serious green crusties all but sealing both eyes shut. I smeared some water based super mild makeup remover over both eyes and let it sit for ten minutes, and then wiped it all away with nary a protest from The Snackster. Checked a temp. Normal. Listened to his lungs. Clear. Tried to see into his little ear-balls ~ after three days of every doctor in the state probing everything from his eyes to his parts, he was having nothing to do with me going at him with an otoscope! And yes, ear-balls is a word! Google it!

So, my week long fantasy of actually getting some sleep this weekend was shattered first by the fact that I am on call this weekend, and second by Jack waking up fussy and inconsolable at four am. After trying for 10 minutes to soothe him and getting no where, I decided we'd better get up and be more aggressive with the Mommy comfort. And that's when he put his little palm on my cheek. It was hot. I took him to the nursery to check him over and as soon as the lights were on I was treated to the vision of my baby's face smeared with dried green gunk from forehead to chin. Yuck. Green snot from both nostrils. Greenish yellow crap in the lacrimal ducts. Temp? 104.0! Had liquid diarrhea for that diaper and squishy, more full bodied diarrhea a few minutes later. Off to the ER we go...

...checked in at 4:55am after finding a near empty parking lot and a slot near the door, which is really good because the temperature outside was 26.8. Called my on-call recruiter to advise I might be out of cell-phone signal range, advised she'd call my boss for any issues. Saw the nurse, who took the time to coo over him, didn't like how he looked, put an O2 sensor on him, 97% on room air, checked him over, had a squishy diarrhea diaper, got weighed, found out he's lost another 2 ounces for an even 20 pounds with a diaper on. Played with the O2 sensor cable, seemed delighted that Mommy could not take it away from him and say "No!" Got cooed over by every one from housekeeping to engineering, tried hard to stick his head between the rails on the gurney, got mad that I wouldn't let him. Next he tried to jettison himself over the top of the rails instead, laughed at me like it was a funny thing when I wouldn't let him do that. Saw the doc, who also took the time to coo over him. Doc checked him over, said the measle-ey looking rash now spreading across his cheeks and neck is viral, got cooed over by security while we waited for our 'script. Left. Called my on-call recruiter to tell her I was back in cell phone signal range, advised that no calls came in, my boss was not disrupted from her peaceful slumber. Went to the pharmacy, avoided vomit on the pavement right where I get Jackie out of the car, got Jack back into the car while avoiding the vomit and scrambling to figure out where I'd left the 'script, found it the top of my on-call bag in the back of the van where I'd put so I could find it while I was bungee-ing down the stroller I'd wheeled Jack into the ER in. Avoided the vomit while once again getting the baby out of the car, went into the pharmacy, got cooed over there, turned in our 'script, read 'Dear God, It's Me' to Willie while we waited. He liked it. Didn't buy it, had ratty edges. Got our 'script filled, got a syringe which wasn't in the bag when we got home, went out to the car to again avoid the vomit on the pavement while I put Jack back in the van, drove home through wakening Saturday morning streets while listening to Willie coo, and pulled into our driveway at 6:44am. And guess what the doc said? Sinus infection persists, for one, severely inflamed right ear for another, mildly inflamed left ear. And guess what he gave us? Yep, you guessed it! Augmentin. Said it would have been his first choice for The Willister. Damn that Dr Asshat. If I had the energy I would begin every one of my blog posts by writing his real name and then issuing culturally sensitive insults of the most damning kind, suitably proffered in the language of his national origin. But I don't have the energy and he's really not worth it. So he will remain Dr Asshat.

Jack's playing happily on the floor now that his fever is down, telling his telephone very loudly, "but, but, but, but!" alternating with "wub, wub, wub, wub!" I'm having coffee with sugar, a scoop of chocolate and obscene amounts of coffee creamer, some Excedrin maigraine for the caffeine content, and a toasted "Everything" bagel, piled high with fluffy comforting clouds of whipped cream cheese! The entire household remains asleep. Jack feels better. Life is good.

1 comment:

Not a Perfect Mom said...

okay...seeing as how you've had a tough week I won't email you complaining I never hear from you anymore....
and Brooke is back on antiobiotics...she was off of them for 5 whole days...sucks ass...
just take out the tonsils and adenoids already...