...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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Saturday, July 31, 2010

I Didn't Know I Liked Monkeys!

Will finally got some cuddle time with "Grandma Wisdom!"
Grandma Wisdom is a pro at holding babies!
Debbie, Conner, Grandma and Willie
Debbie and Conner actually had to bargain over who "got to change the poopy diaper!" How funny is that? In the end, they wound up changing two poopies, both as a joint effort! Willie let loose with his canon and pee'd all over Conner! I wish I'd had the video camera!
We were all laughing too hard to get more than two pictures of the poopy diaper and waterworks!
"Where are the feet?"
"These are not feet!"
"Oh these snaps are tricky!"
Notice how Willie migrates to different positions during the snapping process!
A rare picture with the elusive Ryan!
When we arrived there was a sweet package all wrapped up for Willie!
I didn't know how much I liked monkeys! These are adorable. Three monkey onesies with matching monkey bibs and two pair of super soft pants!
Darling! Conner gifted Willie with this teddy bear on our last visit. It stays in his cradle for snuggling!

Rock 'n' Ride

Late in June The Beloved and I went to the Rock 'n' Ride for Autism because, well, we have at least two Littles with ASD. It was sponsored by our local Harley Davidson dealership. We bought Willie his first bad-ass-biker outfit. The best part of the day was definitely riding the scoot! It's been a long time since I've gotten to ride on the donor cycle but the wait was certainly worth the ride! The Older Littles have gotten to ride more than I have, and it does stop my heart just a little to see them beaming up at me from the back of a murder cycle, but I have to remind myself that The Dear Daddy is more than aware of his precious cargo. Growing up, The Beloved, then just Boyfriend, was one of only two people I ever felt safe riding with. The other was my Youngest Older Brother. The one addicted to heroin and coke. Go figure. I clearly remember my Mom and I standing at the kitchen window one afternoon waiting for my brother to arrive. We could hear his motorcycle as it got off the freeway about a mile away. We could tell when he turned onto the boulevard by how the whine of the motor decreased, and just how fast he was approaching by how loud it got. We went to the window when it was clear he'd barely decelerated from the boulevard to come down our street. And he pulled his Harley up to the curb and parked and got off of it. All 6'1" of him. Barefooted and bare chested. Wearing nothing but Boxer shorts. As in underwear. Things you wear under pants. I thought my Mom was going to drop her teeth! But that's a story for another day. One of these days I will post a page about my sordid past and sketchy upbringing. For now, here's a picture of Willie in his new duds!
I hesitate to post this one because I didn't realise how yukky my profile is. But here it is. Will is being allowed to sleep on his side for once because no matter how many times I put him back onto his back, he just kept rolling to get me. He's keeping his binkie in his mouth for the first time ever all by himself!
Here we are, sharing warmth. Sharing breath. I love this boy!

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.

Thursday, July 29, 2010

Junior Blind of America, Take II

Shortly after Anna from Early Intervention left at 3:50 pm, a very nice lady named Laurie arrived from The Junior Blind of America. I really liked her and she wasn't scary at all. Even though I previously posted that I was wiggy because Jack was getting services for the blind. She was quite nice, personable and friendly with Jack.

I usually time Jack's bottles to either be due an hour before his standing date with Anna, or right after. If he eats too soon before Anna arrives he gets sleepy. If he's due to eat when she arrives, he gets cranky. Today was perfect. I had just popped his bottle in his mouth when Laurie arrived. She'd told me on the phone that she wouldn't be working with Jack much on this first visit, that she'd mostly be asking questions and taking a history from me, but she did hope she'd get to meet him. Like I said, a nice lady.

So, I fed Jack and answered questions, and he charmed Laurie. We even covered our years of fertility treatment for the Older Littles. At one point Laurie asked for clarification of his name. Is G****** his middle name? No, it's one of his last names, T*** being his proper last name. What's his middle name? Leonidas. Oh, that's unusual, did you name him for someone? I explained that his Dad and I wanted a strong name sake for the challenges that may lie ahead. William Wallace of Scotland and King Leonidas of Sparta were both very strong of character and of might and met their challenges coming rather than going. Wow, that's quite a legacy for a little boy! Well, we figured with the Down syndrome he might need a little leg up on bravery. Oh! He has Down syndrome? I hadn't been aware of that! She seemed excited by that! And she turned to my Willie Boy once again. And he gave her a big wet slobbery grin! She said she would not have guessed because he simply didn't look like he had Ds. She said she's worked with quite a few babies with Down syndrome (Points for putting the baby first!) and she just would not have guessed! Then she spoke to Billy-Joe-Jim-Bob in her sweet cooing voice and said, "Well that makes you just an even more extra special surprise blessing, doesn't it!" and she meant it! (I tell ya, this gal racked up the points with me!)

So after an hour and half, we have an appointment for next Friday to see her again. She'll bring a bunch of auditory and visual stimulation toys and try to best determine how much of a visual field or loss Jack does or does not have, and she will tailor a vision therapy program to meet his needs. I really liked her and how she regarded Jackie Boy and I am looking forward to our next appointment!

And I promise, there are pictures in the following post!

Oh Dear!

This is how I found Jack asleep in his cradle when I got home from work this morning! Yes, he's upside down with his feet higher than his head! Kinda defeats the purpose of snuggling the Boppy up to his butt to keep his head in the area of the elevated cradle mattress! Sweet Miss S thought the Boppy was to protect his head, but now she knows!And he's pretty cute all the same!I have to admit that I got a chuckle out of this!

Tuesday, July 27, 2010

Heather Needs to Change Careers!

She needs to change from working with the Autism Response Team and become a physical therapist!Up!
And down!
He's putting weight on his arms!
"Okay Heather, that was fun...but how about if we go make some cookies now?"
Look how tall he's holding up his head!

My Boys!

I love the goofy faces they're both making!

Sunday, July 25, 2010

Eeeeewwww! Gross!

I know, many would say "Eeewww, gross!" but Jack cries every time Princess stops!

Friday, July 23, 2010

Slumber Party

Jack, Princess, The Girlie
Cushions. Lest they fall!