...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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Monday, August 9, 2010

Oh Yes I Did!

I did it. And it felt good. Really, really good! And I'm not sorry. Not. One. Bit. In fact, I think I'll do it again. Soon! Let me explain...

Last week I received a call from the bus company that picks up The Littles. They left me a message letting me know what time The Middle Little should be ready. Nothing about The Oldest. Neither of them are going to schools in our actual district, which ironically is about ten miles farther from home than the schools they are attending. Go figure. So, they take the school bus. So I started calling. Yes, she was bussed to and from the same school to and from the same home last year, but she was not on their schedule for this year. Contact the school. So I did. And the school contacted the district. And the school let me know Saturday morning that the district notified the bus company and faxed over The Girlie's authorization. The bus company called Sunday morning to let me know that they still had not received any paperwork for The Girlie, therefore she would not be taking the bus on Monday. And that was Sunday, so while the bus company was in the office, neither the school nor the school district would be.

So...how to get two kids to two different schools at exactly the same time. More importantly, how to pick up two kids from two different schools at exactly the same time as everyone else in the district. Dang.

Well obviously I can't wait at home for The Middle Little to get on his bus and still drop the Older Little off on time. So I took them both to school. And knowing this process had to be reversed in the afternoon, I couldn't take the chance that I'd be stuck in traffic picking up The Oldest while The Middle Little's bus was at our home. So I picked them both up. Early.

And at the The Girlie's school, I met a little resistance. The gal was new and unaccustomed to the fact that I have already established the "Don't piss me off or say anything stupid to me and I won't hurt you" attitude. So I calmly explained for the third time about the busing fiasco, the inability to be in two places at one time, why I was picking The Girlie up at 1:30 in order to get to The Middle Little's school to retrieve him and still get us all home in time for the ART to arrive at 2:30. She still didn't "Understand" what the problem was. So I said, "I have a medically fragile infant. He's not supposed to be out in this heat." Magic words! I swear the structure of her face changed. The Girlie was summoned and we were out of there! At The Middle Little's school, encountering the same line of questioning for the umpteenth time, I uttered those magical words, and we were off campus and on the way home before the final bell rang.

Yes, I think I abused the power. I also think that the clerks at their schools were being overly pragmatic. I also have the words from Jack's pediatrician, delivered in a solemn doom and gloom voice: Keep him out of the heat. Do not take him to crowded places. Do not take him to the grocery store. Do not take him where there are other children. Keep him home. Yes, he had pneumonia. Yes, he had a dual ear infection. Yes, he has some minor cardiac defects. (Does that even work in a sentence, minor and cardiac defects, especially in relation to an infant?) So does that make him medically fragile? No. Would I do it again? You betcha!

2 comments:

P said...

He's as light as real feather, do what you need to do. Yes, that's fragile!!

Tracy said...

Thank you "P." I hadn't anticipated feeling guilty after the fact. But I kinda did. Won't stop me from doing it again under those circumstances!