...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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Friday, July 30, 2010

Speech Therapy

Last Wednesday I got both the Little Little and The Middle Little to nap at the same time. So, I did what any good mother would do and took a nap myself. For two and a half blessed hours! I was planning to work that night, so I needed at least a modicum of sleepy time! And during that time, the SLP who caused me such pause with her visit, called three times. Three! She was trying to get her schedule together and wanted to know when the best day and time would be to see Willie to start his formal speech therapy. I clearly recall her vehement denial that she actually did the therapy. She said that both of their STs were out of town and she'd been asked repeatedly to take Willie on her case load. And she said she'd refused the possibility of doing any more evaluations out in our area (she lives about 30 miles away) unless Willie was included. Very, very strange indeed!

So, I gave her directions and we set an appointment for this morning at ten am. She arrived at 9:50. I answered the door with "Oh, you're early." She said "I didn't think you'd be home." Huh? I said I wouldn't have set the appointment if I hadn't planned on being home. Not off to a good start, but it did improve significantly from there!

During our one hour visit she did quite a bit of stimulation with Jack's mouth. She used frozen lemon glycerin swabs which Jack liked quite a bit! I'd brought some home and they are currently in the freezer. She also poked around in his mouth with a straw and while Jack preferred to chew on it rather than suck, she did seem a little more in her element with him than on her last visit. She sat down on our ottoman to be right at level with Jack. I did suggest more than once that she try lifting the swab up a bit so that Jack would lift his head. She did and he followed suit. She wet one of the star shaped pink dental sponges (brought home a bunch of those too!) and worked around in his mouth some more. Eventually she explained what she was doing in his mouth and why each activity was important. Yeah for her! I'm trying hard to like her now that I know she'll be in our lives for a while. I almost feel guilty about my previous post, but looking back on that visit in it's actuality, I glossed over much of that very, very bizarre visit! So I am leaving the post up!

Next we moved on to some banana! We just happened to have fresh bananas so I cut off about a third of one and mashed it up good. Remembering how alarmed she was about chunks, I tried to get it nice and smooth. It got kinda runny instead, so I had to stop. It's odd. The bananas were rather firm, but this turned almost juicy. And, more points for her...not only did she agree to man the camera for Jack's first taste of bananas, she took three good pictures!


Jack liked the banana and finished the whole serving without spitting much out. More points to MN, she actually directed me on spoon placement, even if it was something I was already doing.

I did have to remind her five times that no, I hadn't tried feeding him this or that yet because I was waiting for the SLP to tell us if it was safe to do so. She finally got it on the fifth time.

At the end of the visit she gave me some printed information to give to Jack's sitters on the importance of his body position while eating. My friend Dee Dee and I agree that after our first disastrous visit, MN went home to research this topic and educated herself.

She wasn't able to give us a return visit date, but noted my preference for Tuesdays at about ten am. She's going to try to get Regional Center to pay for the Fisher Price portable feeding chair with the five point harness, because frankly, Jack needs it and we won't have the bucks for it until next week at the earliest.

As I gave her directions to her next client and then more directions from there back to her office, I said goodbye to her feeling much better about the situation. She had willingly held Jack while I prepared a bottle for him. He was comfortable in her arms and she didn't fumble with him. I'd wanted to ask her before about her experience with babies, any babies, but it turns out she has two children of her own and five grand babies. Like I said, I'm trying to like her.
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