...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

MusicPlaylistView Profile
Create a playlist at MixPod.com

Friday, July 29, 2011

I Can Thank Down Syndrome For That...

Please stop what you're doing and go over to Holly's blog to marvel at her beautiful little Brooke. She has written an amazing post about perspective and achievement, for our babies, and for as as parents. Please go read it here. She inspires me.

Thank you, Holly. Knowing you is just one more thing that I can thank Down syndrome for!

Saturday, July 16, 2011

Auntie Bits

Please pray for my dear friend Bits. She and one of her children have been hit with that wrench and hit really, really hard. Hard times come and hard times go. There is usually a reasonable hope for good times to return. When there is not that hope, there is despair. It is truly desperate times when it involves our children. Then hard times become suffering and torment, and no matter how bad things have been, that damned wrench just keeps coming back to hit them again and again, leaving bigger bruises, deeper wounds, injuries that will not heal. That cannot heal. That damned wrench has claimed far more than it's pound of flesh and I hate knowing that it still flies, bloodied with their pain, to hurt them again and again many more times before this is over. Please pray with all of your might for my friend and her child.

Keep your head above water Bits. You will get through this.

Click on the Music Player to hear this beautiful song*.

Did you ever picture your life like this?
No shooting star to grant your wish.
Are you everything you hoped you'd be...
or caught somewhere in between?
You dropped your nickels down a wishing well
and prayed for luck to cast it's spell,
to bring you closer to your dreams,
that always seem just out of reach.
You pray to God the moment when
you feel the current pull you in.
Tryin' to keep a head above water
has never been harder.
Even when it feels hopeless...
you're gonna get through this.
Head above water
gotta fight from going under
even when it feels useless to wish...
you're gonna get through this.

Have you ever felt like giving in?
Tried for hours but just can't win?
Tell yourself you're not good enough?
The struggle alone is just too much.
No one's there to hear you scream.
Gasp for air but just can't breath.
Did you ever think you'd see the day
when you'd watch your life get washed away?
You pray to God the moment when
you feel the current pull you in.
Tryin' to keep a head above water
has never been harder.
Even when it feels hopeless...
you're gonna get through this.
Head above water
gotta fight from going under
even when it feels useless to wish...
you're gonna get through this.

Did it ever hurt so bad
that the thought of feeling lost
would never end?
Well you will think again.

Tryin' to keep a head above water
has never been harder.
Even when it feels hopeless...
you're gonna get through this.
Head above water
gotta fight from going under
even when it feels useless to wish...
you're gonna get through this.

~Theory of a Deadman
Head Above Water
The Truth Is...Album

*Can anyone tell me how to make the music play automatically?

Thursday, July 14, 2011

Well then...

July 8th came and went this year without any notice until days later...

It was an after thought this year, that date that seemed to have such profound significance just one year ago. Jack, you've come a long way, baby...and so have your Mommy and Daddy.

Three weeks ago, I brought home a swimming pool. The water park would cost $228.00 for the package deal that we could use for roughly six weeks, since they go back to school the second week of August. The pool cost $249.00, plus no driving, no parking, no inevitable registration ticket for the van because I am incapable of ever paying for it on time, no over priced concession stand food and drinks, no wet seats in the van, no eeewwww every time I see someones diapered baby in the water, and we can use our own pool until it gets cold, whereas the water park closes after Labor Day every year. The pool took less than an hour to assemble and start filling. It is NOT my fault that the Dearly Beloved decided that the entire back yard had to be cleaned up, taking a full day, before the pool could go up. I would have made the kids clean up the area the pool was to be set up in and done the rest later as incentive for the kids to be able to get in the pool!

Two weeks ago I brought home a swing set. Again, it was a great deal, and all three kids love it. I bought a baby swing for Jack, and there's a nifty saucer thing that will encourage his abdominal muscles to strengthen while he balances himself in it! That took a full day to assemble.

Last week, since we are a family of five now, and since the front porch glider canopy is long gone, and cannot be replaced anywhere, and it's only a two-seater anyway, and looks really junky and broken down on the front porch, I brought home a new glider. The old canopy-less glider is now under the tree in the back yard, and the new glider resides on the front porch, shiny, gleaming, smooth and canopied! Which really has nothing to do with us being a family of five, but it's just the perfect size for My Love and I to sit on the porch in the evening breeze.

And The Dearly Beloved said to me, "If you bring anything else home for me to put together, I'm going back into the house and pretending I never saw it. You're on your own." I'm pretty sure that he meant it, but I'm not going to test it out. I did see his chest swell out quite a bit when he saw how much fun Jack was having on the swings and saucer while The Girlie and The Poddest of Pods were whooping it up in the pool.

I love my new job...been there since June 8th! At my old job I was working about 80 hours per week with nary a thank you, all for $50.00 per week travel reimbursement. This job? I'm working about 40 hours per week for roughly the same pay, but the travel reimbursement for two weeks paid for the swing set, the pool and the front porch glider, including tax!

A huge thank you to the Dear Daddy for all of your hard work and for all of the great fun your children are having as a result!

Wednesday, July 13, 2011

New Toofies

Poor Jack has been miserable trying to cut his last first molar. It's taken twice as long as the other three to come in put together...but it's finally in as of this morning! It's tooth #8, on the bottom left!

Tuesday, July 12, 2011

Letting Go...

A few nights ago, Jack was standing next to Princess' kennel having one of his nightly holler-fests with her. She licks his fingers and when she stops, he hollers at her to do it again. Suddenly he let go. He stood for all of 3 seconds before plopping down on his butt. I tried to photo-document the event, but with Jack down, Princess laid down and they had a staring contest instead.

Despite the fact that I absolutely forbade Stoopid Katee* from telling me any new thing he does until I've already told her that he's done it for me, she reported last week that she let go of his hands and he stayed upright for a few seconds in a standing position.

Other fun stuff he's taken to doing is pushing the dining room chairs across the floor and walking behind them full speed, sometimes faster than his little legs can carry him, and he's all but running around furniture now, instead of cruising. Some not-so-fun stuff: his Father allows him to crawl from the couch to sit on top of Bailey's kennel and sit up there like he's king o' the kennel. What? Really? Who is this man? It amazes what what Jack gets away with doing around his Dear Daddy. The bathroom door is always closed now. He has not discovered the lid to the toity raises, but he has figured out to use the brute strength of his arms along with the traction of bare toes to skinny up the side of the bathtub, over and in...head first. He's narrowly escaped injury only because he's only allowed in the bathroom when someone is there to prevent a topple. We're aiming for walking by two. I keep hearing how much trouble he'll get into then, but really, the boy gets into tons of trouble now!

There are so many moments in our children's lives that make us burst with pride. Who knew some of the biggest would be so simple. I asked Jack, "Where's your nose?" and he poked his own nose several times hard enough to smoosh the tip down. Katee taught him that! Then I asked Jack, "Where's Mommy's nose?" He lunged forward and sank all five sharp little nails into the tip of my nose! Yep, he actually made me bleed, but he found my nose!!

*We love you, Katee!

Tuesday, June 21, 2011

Growing Up

Today my little girl hit a major developmental milestone, but she forbade me telling anyone. And I promised that I would not. So I can't. So don't ask. Because I cannot tell you. Period.

My cell rang in the late morning. She'd snuck the phone into her bedroom, away from the nurse and the sitter. Oh, my heart was pounding. I'm sure the ring wasn't any different than it's ever been, but even before I saw where the call originated, even before the first tentative "Mom?" I was bracing myself for the words that I knew would come. And they did. I swear I had at least a few heart palpitations. I pulled over to the curb and directed her in the step-by-step of what to do. She responded by snapping my head off. I said I'd be home within the hour and made it there in 45 minutes. I wanted to make sure she was not having any discomfort, but even though we were sequestered in the bathroom with the water running in the sink, every privately and discreetly whispered inquiry was met with shortening the stub of my neck where my head used to sit. Dang! I can't wait for next month!

In the evening she timidly asked "Mom. Do I have to wear it to bed?" All timidity was instantly gone when I replied "Yes, sweetheart." You'd have thought I'd strangled her favorite pet and served it to it for dinner with a demi-glaze of apricot sauce! Clearly, it is entirely my fault that she is, in her own desperately quiet words, "Suddenly...I'm no longer normal."

I'd hoped this event would take place outside of school hours. Wish granted. It causes me great pain that she is so very adamantly refusing to discuss any little detail. She gets infuriated when ever I try to give her direction or tips. So, I made a list, sent her brother outside with a Popsicle and tackled it all at once in one fell swoop. There are things she needs to know, like, yes, you have to wear it to bed. And, you need to wrap it up before you put it in the garbage. Stuff like how to tell when it's on it's way, what to look for, how to alleviate the discomfort. The angrier she got, the calmer I got. I finally said that I wasn't sure why she was so angry with me, that I just wanted to make she she knew what to do and how to do it. That's when the tears came and she whispered so, so very quietly, "It's just that...suddenly...I'm no longer normal." I wanted to scoop her onto my lap and rock her like a baby. Instead, while I had her attention minus the glares and daggers, I assured her matter-of-factly that it was indeed perfectly normal and that all of her friends would be experiencing the same things very soon if not already.

So, the less said, the better. I'll wait for her to ask what she wants to know. And then I found the pile of laundry and the comforter that looked like a small farm animal had been slaughtered on it...four days later...balled up in a corner of her closet. Thank goodness for ordinary old household hydrogen peroxide!