...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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Friday, August 6, 2010

Carrots & the JBA

Here's Willie attacking his feet!I strongly objected to having Willie's ST today, just an hour and a half before his initial assessment with the Junior Blind of America. I didn't want him tired out. In the end, the ST didn't call me back to firm up out appointment for Willie's optimal time of Tuesday at 10:00 am. I called her in the morning Tuesday. She called back and said she thought we were on for Friday at noon. She had nothing else available until then. She insisted she could be out of the home by 1:00 pm so that Willie could rest for his next session. I should have listened the The Mommy Voice.

Anyway, here she is trying to get Willie to close his lips around a lemon glycerin swab.

Here he is having his first carrots! He seemed to like them quite a bit!
But of course, it's always more fun to squish the bib into his mouth! All in all, he ate about 3 ounces of carrots, and 3 ounces of bananas, followed by 4 ounces of formula!
And the ST did not leave until 1:20.

Consequently, when Laurie from the JBA arrived ten minutes later, she got 20 good minutes with Willie and he got cranky and wanted to sleep. I have tried my best to like this ST and it just isn't happening.

Laurie liked what she saw though! Willie tracked red, yellow and blue flash lights, turned towards pictures placed in his peripheral vision, and did tummy crunches trying to locate pictures and objects lowered from his line of sight. The real excitement for her was that he preferred the more complicated pictures to the simple ones! He also turned to locate noisy objects held behind him!

Despite the brevity of the session, Laurie said she had a good feel of where Will is visually. She will do at least two more assessment sessions and then tailor a visual stimulation program for him! She spent the remainder of Will's time speaking with me about various things to do to encourage his obvious interest. I really like Laurie and so does Willie-Pilly! We can't wait to see her again next Friday! Please say a few prayers for Laurie as she is in the home stretch of treatment for a serious illness.

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