...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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Monday, February 14, 2011

Hurting...

I'm danged tired starting my third week at this new job. I haven't settled my feelings about what I've been allowed to see this last week enough to talk about it. The immediate things that come to mind are a two year old angel of a girl who won't live to see three, and an eleven year old with liver cancer that I drew blood from today. Yeah, it's been kinda rough. Duh! What was I thinking? Sure I thought I'd have other babies with Ds like Willie, and I do, but where were my ears when my brain was screaming that these kids are sick and some will die? I guess I was still living in the honeymoon of Down syndrome because Willie is just so perfect and precious and good. But Willie is healthy. These kids are not. And it really, really sucks and it hurts quite a bit more than just a little.

I haven't blogged because I've been trying to soak up my kids while I am home. I am seriously rethinking my decision to work days. How do you busy day working Moms do it? Not liking this being away all day one bit. And all Willie wants to do when I get home is scratch and pinch the crap out of my face. He thinks it's very funny to draw blood from my cheeks while wearing a big goofy grin. It seems to be a mix of "I'm really happy you're home but now I'm going to make you suffer for leaving me." I'll post pictures when my heart isn't so low. Thanks for listening. Truly.
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3 comments:

Becca said...

I couldn't do the job you're doing, and I truly applaud you for it. I wish I could, but I'm pretty sure I'd self-destruct daily, watching sick children struggle. But living in denial, as I do, doesn't help *them.* I'm grateful that there are caring people like you out there to help, but also know that while *I* don't feel the burden, someone else does. There's no answer other than to just abolish sickness in children. I wish.

Anyway, I'm rambling...don't worry, all that scratching *will* pass!! I thought it never would, but finally, suddenly, it did. Just like throwing, hitting, etc. :-)

I work full-time, too, but really treasure the morning and nighttime routines I have with Samantha, and our time on the weekends. Good luck with everything! That transition is not an easy one.

February 15, 2011 at 3:33 AM
Not a Perfect Mom said...

awww...I'm sorry...I could never care for sick little kids...and it must blow to be away all day...

February 15, 2011 at 5:38 AM
Anonymous said...

I'd have a really hard time working with sick kids like that too... I grew up wanting to be a doctor, but wonder if i could have handled it.

Being a working mom is hard. Harder than many give you credit for. My little girl loves going to daycare, but cries when other parents pick up their kids and her mommy or daddy isn't picking her up... it breaks me heart to see her upset when i pick her up. and then she is usually a stinker when we get her home... moody, tired, etc. But when she is home all day the evenings aren't nearly as difficult.

I wish I could work 6 hour days... I'd be able to pick my girl up early and maybe even actually cook a meal rather than just warm something up...

Hugs,
Dannielle

February 15, 2011 at 6:35 AM

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