...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




Lilypie Second Birthday tickers
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, May 4, 2010

The Good, The Bad & DANG IT!!!!

THE GOOD: Willie no longer has to see the neonatologist that I describe as "The dog who sleeps with his fleas."

THE BAD: His echocardiogram for tomorrow morning has been cancelled for the third time. Willie has to have a referral from his new pediatrician before they will see him.

THE GOOD: Willie doesn't care! About any of this. Only his Mom does.

DANG IT!!!: We were not assigned to the pediatrician we requested. Not even close! We got the name of his new doctor from CardiologyForKids.com when they called today to cancel his appointment for tomorrow. Yes you read correctly - type that into your browser and you'll find them! They are the only game in town for miles when it comes to wee ones and their hearts. Please refer back to the post where I describe my choice of driving 60 plus miles away to see a high risk OB or going to the Public Health Clinic here in town. I'd link it for you but I have not figured out how to do that. Between my city and our neighboring city, we number about 280,000 in population, but for some reason, our available health care choices still bite.

THE GOOD: I called the new doctor. They are nice and have good grammar and an excellent command of the English language. That is especially rare around here where most doctor's office staff just do not care how badly they butcher sentence structure. I explained our situation to the gal who answered the phone. Yes you heard correctly - a real live person answered the phone, not a techno voice demanding that I press 1 for English. Once I explained our needs, she explained them to the appointment desk and guess what? Instead of waiting weeks for a first time visit, Willie has an appointment for tomorrow at 10:45. The same time we should have been strolling into Acme Cardiology.

THE BAD: Willie continues to show a distinct lack of enthusiasm for this great news. I'm going to have to speak to that boy.

DANG IT!!! The Middle Little starts school at 8:00 am. I got a call from his teacher this morning. At 8:12. Not good. I didn't need the caller ID to tell me it was his school. No, just hearing The Middle Little's angry rabid screeching as I lifted the receiver to my ear told me that much.

THE GOOD: I was able to talk him out of his tree and he returned to classroom activities as calm as you please. The Teacher called me at lunch break to tell me he'd been just dandy since. And I got to follow up on the note I sent her this morning requesting that neither the Vice Principal nor the school pseudo-nurse be in attendance for The Middle Little's IEP at the end of the month. She said this is completely within my rights to request, but we'll have to change the date so that the Principal can attend instead. This is good. This is very good. The principal will no doubt get an ear full from a pissed off Mom who will have a good few weeks to prepare what she wants to say about his Vice Principal and his 'nurse.'

DANG IT!!! Nothing more to say here. I just like typing DANG IT in boldface!
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1 comment:

Denise said...

You are funny!! And oh so creative!! I kind of know what you are referring to in regards to having to travel for the specialists. Living in Temecula, our choices for ANY specialists are either San Diego or Orange County...both of which are 60 miles away. But hey, it's always fun to take a nice drive!! I think I owe you a return email....must check my inbox!!

May 4, 2010 at 1:21 PM

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