...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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Tuesday, January 11, 2011

Some Good News, Some Better News & Really? Parts 1 & 2

So the good news is that the job I trekked out into the snow last Monday to interview for? Looks like I got it. My background checks and references have all checked out and I'll go in this week to initiate the formal hiring process. The better news? The company works almost exclusively with special needs children and very, very seldom has typical adults in their care. Yeah!

The Really? My here-to-fore potential boss was scheduled to come out to see Jack today to start him up for nursing services. Yeah, I know. I'll get to that. So my first concern when I get the message from MM at The Company is that there will be a conflict of interest in my being employed for them while my baby is getting services from them. Miss D assured me that as long as I wasn't case managing (No desire to case manage, thank you very much!) there would be no issue. The second and more huge consideration, do I really want my potential future boss coming into my home to see where I live and notice all the dust (and dirt, let's be honest!) in the corners? Thirdly, in the section where I was supposed to describe why I'd be an 'ideal candidate' to work with special needs children, I played my trump card and said that I have two older children with autism spectrum disorder and one baby with Down syndrome, and that as a veteran RN and a mother seasoned in special needs, I had experience that other's may not...but did she really need to be treated to the floor show that The Middle Little can put on? Fourth? The front room remains a disaster. It's a neat orderly disaster, but a disaster none-the-less. There is just too much stuff and too little house. So it's in the front room. That's what happens when you suddenly need an extra bedroom for a little miracle baby and the garage is already filled up to the rafters!

In the end it all worked out. I cleaned like a mad woman for Sunday and Monday, going as far as to de-clutter the front porch and launder the doggy linen so as not to lend olfactory offense, and vacuumed and mopped the floors this morning the minute both Littles were on their buses. The house was clean and smelled good. The kennels were clean and smelled good. The baby was clean and smelled good. The children behaved like dreamy little cherubic angels. Really! They did! Even the dogs behaved!

So, I have a new job and a house that is clean. And I will have to keep it that way until next Tuesday when the new boss comes out again to formalise the services she will be requesting for Jack and sign papers and do all of that.

And that's the second part of Really, part 2. In the younger years, the cost of The Middle Little's child care was quite hefty. Still is actually. The difference is that he's no longer such a handful that I'm paying someone a huge amount of money not to get so riled by him that they abuse him and now I'm paying someone a huge amount of money not to get so fed up with his mouth that they abandon him before I get home from work. He has come a long, long way, but he is still a big, wiggling, loud, boisterous, rambunctious whirlwind that 'handful' doesn't come close to describing. With his diagnosis of ASD came some child care and respite hours from the Regional Center. When The Girlie earned the same diagnosis, she was also granted child care and respite hours. It's not a great deal of money, but it does help offset some of the costs. When Jack came along with all of his special feeding issues, we decided that he needed his own care giver and we already had someone in mind who foot the bill perfectly. With the budget cuts the Regional Centers or someone at the state level decided that children under 3 years old do not qualify for childcare or respite hours. I guess little people unable to provide care for themselves are not deemed deserving of that care until they prove their worth by surviving to 3 years old. It makes no sense to me. Because Jack gets preprandial medications as well as an albuterol MDI, he qualifies for a skilled nurse to provide his childcare. I'll basically be leaving my child in the hands of an LVN to provide while I am away, what I will be providing for another child as an RN. Seems like a tremendous waste of tax dollars to me, to pay a skilled nurse to do what Jack's baby sitter has already been doing quite well for significantly less money. Why don't they just cut out the middle man and pay me to stay home and take care of Jack?

So there you have it. For the record, we'll only be using this LVN until I am once again gainfully employed and can revert back to our old ways. The gals who have been babysitting so far will now share duties of taking care of The Olders, switching off nights with each other. While an over paid other person is in our home taking care of Jack. It makes no sense to me, but we'll do what we have to until we're on more firm financial ground.

Once the business of Jack was all decided, we turned to talk of my employment. She asked me a little more about what kind of nursing care and client base I was interested in, and said she'd speak to MM tomorrow about me perhaps filling a few positions that have just become available. On top of that, I liked this gal. She was at ease with herself and she cooed at Jack! Really, how am I not going to like someone who coos at my baby?

So you've done it again, Jax-Snax! You've shown me another new dimension to life by being born with your awesome extra chromosomes. I've always wanted to work with children and babies, but without you, I would never have considered working in special needs home care for them. I'd never known there was a need for it, because I'd never been the one whose family needed it. You are amazing Little Dumpling!

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