...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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Thursday, February 24, 2011

Lots To Say

Jack's been discovering how his legs work! He's refining his 'crawl' to actually involve his legs, in a left~right~left three step fashion so that it actually looks less like a 'drag' and something more akin to an actually 'crawl!' If he's travelling 20 feet, I can count on the left~right~left action about every five 'steps.'

Here's a newsflash. On Tuesday night, Jack actually slept in his own crib. FOR THE FIRST TIME EVER!!! I love how he sleeps with his little butt up in the air!
It made me uneasy to have him all the way down the hall, and I had a really hard time falling to sleep. The baby monitor alerted me to when he woke at about 3:30, and into our bed he went. Along with the Girlie who later said in true Girlie fashion, "You know, Mom. I don't really feel safe with him in his crib. I think it would be much better to have him here with us. I just don't feel safe with him all the way down the hall in his room. I couldn't sleep." Notice how she's perfectly comfortable claiming our bed as her own whenever The Beloved isn't home!


And here's another new skill...he's transitioning from a semi supported sit to a crawl! He's discovered that he can get away from me, his OT and his PT. I guess the therapy is paying off?

This big news came yesterday morning while I was getting ready for work. This deserves a drum roll...Jack crawled/dragged himself over to the Woody doll, picked it up, and without letting go of Woody, he transitioned himself into a sit, tall and erect... and while triumphantly beaming up at me, continued the fluid motion of falling right over sideways! Boy was he ticked! Such brief triumph so quickly turned to tragedy! I propped him back up with the Woody doll to sit, so I could snap a picture or ten, but he wouldn't sit up tall again...more of a "I'm safe in this position" slump!

He's doing really well with the soy milk. He gobbles it down like his favorite dessert! I'm having a little trouble communicating with his sitter. I thought I'd been pretty clear that Dr Elaine gave the go-ahead for her to feed Jack spoon food twice a day. I'd lined up a bunch of breakfast foods and fruits, and a bunch of lunch foods and fruit and veggies. Suggested she feed him breakfast at about nine, and lunch at about one in the afternoon. Put out bibs and spitty cloths and all of his paraphernalia for preparing to eat. First day went well. Second day...I asked how he'd done and she said, "Oh, I didn't know I was supposed to feed him every day." I keep her because she's really good with the kids. She's no nonsense with that mouthy Middle Little, gentle with The Girlie, and she has genuine affection for Jack. Plus, what ever she may lack in common sense, she makes up for in keeping~my~kids~safe!

In tattoo news, the moon is starting to de~scab. Pretty term, huh? Well at least I didn't photograph the days where it was all gooey, beige~ish, blood starting to decay alternating with dry, beige~ish, blood starting to decay flaky! There's a plus, right? It's at the point now where there are just a few tiny beige colored flakes stuck to it, it's itchy like all get out, and the white of the moon is shiny and smooth and the underlying inflammation makes it look pink. Next up is the stage where it scabs over clear and is itchier than it is now. I don't like this stage. Plus, the muscle underneath started feeling like I'd been beaten with a hammer. Happened last time too. Yep, I'm a big baby about this.
But you can clearly see by the redness how inflamed it is...so I'm really not that big of a baby about it.
Here is it today!

Wednesday night was Jack's second night alone in his crib. Until he woke up at 3:20 to eat. Then he was in the big bed! Thursday night he slept through the night! Yay! I checked on him often, twice encountering The Girlie on her way back from checking on him, and he woke up at about 6:30 when the rest of the household was in full swing, getting ready for school. The Beloved got home Friday night and quickly nixed the Jack sleeping his his crib thing. Who is this man??? He never, ever allowed either of The Other Littles to sleep in our bed! Yep, he's back in our bed...but he again slept through the night!
I'll leave off with with Jack's latest skill...pulling up to kneel at the coffee table!
Jack has not one but two top molars trying to work their way in. There are sharp pointy spikes on each side of his top gums...but he hasn't really been cranky! Here he is having a chomp on his favorite new chewy!
Happy, happy boy!


I love this goofy face!!!

Wednesday, February 23, 2011

Where The Good Life Leads To...

In case you missed it, I saw this plastered all over the back of a Metro bus on the way home from the interview that landed me my new job. It pissed me off then and it still pisses me off today. The city I'm complaining of is high and mighty and full of itself, but I wasn't going to write about that, so I'll get on to what I'm really after...

First of all, in this town where the good life leads to! my office shares a communal bathroom with all the other offices on that floor. And in that bathroom there are typically four rolls of bathroom tissue all lined up on little spindles for your convenient use. Two of those rolls are good quality, absorbent multi-ply toity tissue. Two of those rolls are, at the bare minimum, ten-ply. Yep. You read right. I haven't actually taken it apart to count the layers, but they're THICK! As in you could take an entire bath with one square. Do your dishes. Wash your car. Scrub out your sinks. This got me to thinking. While I am not a tree hugger, I have to wonder, do these elite people even care about our planet? Huh? Do they? While I do not believe we should kill an entire industry to save an owl, I also do not hold with abusing the planet. We live here. Let's keep it clean. Let's do it sensibly, but let's keep it clean.

Being that the communal bathroom we share is also shared with Baby Steps, and being that there is a baby changing station there complete with a Diaper Genie, sometimes our communal bathroom smells like...well the stuff that comes out of babies' butts. I was a baby, I've been around babies, I've had my own babies and do, in fact, have a baby now. This is not a good smell. So, one day this week I trekked up to the third floor communal bathroom. The first floor doesn't have a bathroom. I guess they go in the potted plants. The third floor bathroom was an adventure into rest rooming properly. They had music. They had plants. They had real flowers in a vase on the counter top. They had six rolls of toity paper in each stall and all of them were the ten-ply variety. My next shock was the caliber of hand soap. Not the pleasant enough but clearly industrial grade crap I'd been using in the second floor bathroom. No, this stuff was in a pretty burgundy pump right out on the counter top, next to the flowers, with olive oil and infusion of cranberry. What the heck? And the paper towels? Soft, bi-fold two ply, not the crappy sandpaper tri-fold single-ply rough and chap your hands crap you get out of the towel holders on the second floor. Oh well. What can I say. God never intended this planet to last forever.

And another thing. What's up with the names on the streets? They don't have avenues. They have Avenidas. And nothing is abbreviated. Nope. You'll only see Boulevard spelled out like Avenida and Street and Court, as well as Place and Lane. No abbreviations, please. I've seen lots and lots of personal names for streets. First and last names, please. And then there's the regular b.s. named streets like Melody Lane. Yes, that's a real name. I thought it only existed in Clark W Griswold's world. I was wrong. Rainbow Glen. Sugar Frost Court. Mountain Mist Orchard Road. Ocean Fog Way. Really? Yes, really. Right smack dab in the middle of the desert that is California, a good 80 miles or more from the ocean, they have the delusions adequate enough to name a street Ocean Fog Way. Go figure. There's also Sea Spray Lane and Avenida Lighthouse.

When I drive through Jack in the Box in my up until now decent neighborhood, which is, I've come to see from driving the streets of Where the good life leads to! is really sub-par, mediocre at best, all of my order gets stuffed into one bag. Doesn't matter if I've ordered one meal for myself or four plus meals for the family. It all gets shoved into one bag. Not here. Not in this city. Every item gets it's own bag. My extreme sausage sandwich got it's own bag. Likewise for the order of hash brown sticks that comes with the combo meal. And the mini-waffle cake? Got it's own bag. They guy asked if I wanted salt or catsup, (okay Holly...yes I was alive in 1967, but I'll say KETCHUP just for you babe!) and I said no because I was afraid it would come in it's own bag. Dang. I have a hard enough time keeping my van clean without fast food joints where the good life leads to! junking it all up!

One good thing I've noticed, despite the congestion because every one who is anyone wants to live, or at least work in this city, is that when I put on my blinker to change lanes, people let me. They get out of the way to let me in. It might be the way I drive. It might be that they don't want their shiny Lexus or Beemer to get dented and scratched. It might be both. Or it might just be that life is all sunshine and rainbows in the city where the good life leads to! I don't know. I don't live there. Have I gone on about this enough yet? Cuz I've got more. Lots more. I'm just sayin'...

Tuesday, February 22, 2011

Oy, Soy

So, at Jack's 15 month well baby check, the doctor said, among other things, that he wants Jack to switch entirely to soy milk. Which is quite different than the "extend formula for six more months" he said at his 12 month check up. The problem here is that neither I nor Dr Elaine, Jack's SLP, believe he's taking in enough calories and fat and protein from his spoon food. Yet. Our plan is to alternate Jack's formula bottles with soy milk, thickened, of course, and I started that tonight. He gobbled his first serving of soy milk down like it was pure ambrosia. Do I have to be 70 years old to say things like "pure ambrosia?" cuz I just did. I'm just sayin'... Anyway, Dr Elaine has finally given her blessings on Sonia feeding Jack spoon food independently. And today she did, and she reports he did really well. Since Jack goes back to the pedi in a month, we're going to proceed with our plan and if he doesn't hold his weight and loses any, we'll go back to formula and continue advancing his spoon feeding. Dr Elaine will continue to monitor Sonia's skill at spoon feeding and Jack's willingness to eat. So far, Jack hasn't given her any of the Today I like this but tomorrow I won't, I'll eat all of this cold, some of that warm, none of this at all, and I'll pretend to eat this no matter what temperature you offer it to me and then I'll pocket it all in my adorable little cheeks and give it all back to you all at all once just when you think I've swallowed that last spoonful business that he's given both myself and Dr Elaine.

Sounds like a pretty good plan, right? Here's the hitch. Now that Jack is pending approval for an LVN to care for him, everything that occurs with him, to him, about him, on him, or even thought about anywhere near him has to approved by his doctor, right down to the Desitin smeared upon his little bum, OTC, prn, and all the requisite lingo that goes into a proper order. So if the doctor approves an order for Desitin and I run out and proffer A&D, the LVN cannot apply it to his little cheeks. Same with our plans to alternate soy milk with formula. And you already know how many rounds I've already gone with this doctor. So, wish me luck!

Sunday, February 20, 2011

Jack's Been Up To No Good!

First he figured out how to expand his horizons with a trip down the hall......to pick out a movie...

After that he ventured into the kitchen all the way on the other side of the house...

...to see what mischief he could find...
...under the table...
And this is his newest trick...
...and he's tickled pink to have outgrown his cradle...
...can you see how pleased he is with himself?
And his new kneeling skills have led to this...
...time to teach him how to fold!
And teach him to stay out of the CD's...

...and to NOT pull on the telephone cord... ...cuz it only leads to this...
It didn't actually fall on him...but the loud noise when it crashed convinced him that he was dreadfully injured.
Of course there's always room to explore under the coffee table...

...and what would the day be without kneeling at the step stool?

That top left tooth I spotted the other night is here to stay...not the here now, gone tomorrow second bottom tooth that's been playing shy for months now. So, Jack-Snack officially has four teeth! The top two look to be like normally shaped teeth. The bottom right tooth has finally made it's debut permanent, and it's every bit as unique as it's neighbor, a sharp spikey pointed fang. That the bottom teeth are spikey is no longer much of a wrench to the head. I'm over it. He's my little Jack, and his teeth are spikey.

Friday was his 15 month well baby check. And a new diagnosis of asthma. So he has yet another inhaler, this one an inhaled steroid called Q-Var, 1 puff every morning and one puff every night. Dang. Jack weighed in at 20 pounds and 14 ounces. He is 28 inches long! His head circumference is 45 cm. He's still wearing a size 4 diaper and his crawling skills are getting more uniform...not quite a genuine crawl, but the boy gets where he wants to go, all the same! And Saturday I bought him 7 new sleep and play outfits...size 6-9 months. He's barely hanging onto the regular growth charts at the 1st percentile for height, but he's moved up 2 points and is in the 5th percentile for weight! You go baby! I love you so much it hurts, but in a good way!

Post Script: I also discovered late after this post that Jack has the outer point of a molar poked through his top right gums, way in the back, but I was too lazy to get up and update the post. He's had wide mushy back gums, top and bottom, for about two weeks now, so I wasn't really surprised to find that little point sticking out. It was still poked out when I got home from work tonight, so I guess it's officially a new tooth coming in!

Tattoo ~ Part Two

Okay, so it's really part three, but I didn't show you anything until the first two steps were done...and Tattoo Part Two rhymes, so we're going with that. I have to say, we stopped early. It was significantly more painful than I remembered, so I turned into a baby midway through the moon and when the artist said, "You might want to consider doing this as a two step like before. Come back for the Faerie later," I immediately said Yes, let's do that! So...come back in three weeks to see the Faerie. Also, before you see the pictures, keep in mind that the inflamed areas under each of the little white stars doesn't show in the pictures...it looks very much in real life life I've got festering pimples on my arm. Or Leprosy. And that really kinda cracks me up! And the outline of the moon still contains a bit of the purple transfer ink...so the lines will be finer as it heals. And the moon itself still has quite a bit of blood in the ink, so the white is pinkish bloody and the blue looks kinda green. I'll update as I heal.

Here it is!


Thursday, February 17, 2011

Trouble's a'Brewin'

The Wabiest of Wabies made it all the way down the hall to The Middle Little's room tonight. Thank goodness and all that is chocolate that The Middle was sound asleep!

Monday, February 14, 2011

Hurting...

I'm danged tired starting my third week at this new job. I haven't settled my feelings about what I've been allowed to see this last week enough to talk about it. The immediate things that come to mind are a two year old angel of a girl who won't live to see three, and an eleven year old with liver cancer that I drew blood from today. Yeah, it's been kinda rough. Duh! What was I thinking? Sure I thought I'd have other babies with Ds like Willie, and I do, but where were my ears when my brain was screaming that these kids are sick and some will die? I guess I was still living in the honeymoon of Down syndrome because Willie is just so perfect and precious and good. But Willie is healthy. These kids are not. And it really, really sucks and it hurts quite a bit more than just a little.

I haven't blogged because I've been trying to soak up my kids while I am home. I am seriously rethinking my decision to work days. How do you busy day working Moms do it? Not liking this being away all day one bit. And all Willie wants to do when I get home is scratch and pinch the crap out of my face. He thinks it's very funny to draw blood from my cheeks while wearing a big goofy grin. It seems to be a mix of "I'm really happy you're home but now I'm going to make you suffer for leaving me." I'll post pictures when my heart isn't so low. Thanks for listening. Truly.

Saturday, February 12, 2011

Something To Blog About

Irony. It's a funny thing. Alanis Morisette wrote a song about it. Not that I'm a huge fan of hers, but she does make a point.

Mr. Play It Safe was afraid to fly
He packed his suitcase and kissed his kids goodbye
He waited his whole damn life to take that flight
And as the plane crashed down he thought
"Well isn't this nice..."
~jagged little pill album

And so it is purely ironic in the wry satire that is my life, with me being an admittedly proud speed demon, that the only accident I've ever had took place at speeds too low to register on the speedometer. Yep. Today. In a parking lot. Right smack dab up against an innocuous parked car. I'd underestimated the space I had to turn into a slot and scraped another car.

I reversed away from the car I'd just rolled into and parked next to it. I was thinking a foot long dent and maybe some scrapes. Dollar signs were ringing in my head. Increased insurance premiums. How many points is that on my DMV? I got out to survey the damage. Scratched up the rear fender, the rear panel and the driver's side door. The three people who saw the whole action were watching me to see if I'd jump into the van to flee. I'm sure they saw my face go white when I looked at the car's license plate to note the fresh off the lot plastic placards where a license plate should be. And then my eyes travelled upward to see the shiny silvery emblem of the car's maker and I just about peed myself. Couldn't slide into a shot out run down Pinto (are there still any Pintos on the road?) No, I had to do it big and disfigure a Mercedes Benz. Crap!

But wait...It gets better!

I was standing in my open door trying to decide how best to locate the car's owner. I turned toward my van to open Willie's door while I instructed The Middle the open his door to get some air, and what do I see? A head and shoulders disappearing into the smashed car's driver seat. The owner had come back and had absently gotten into his car and started it, rolled down the window and put the car in gear. Why, oh why could I have not displayed some of the slow witted sluggish thought processes that I've had for two weeks while I've learned my new job? Why?

I called out to him from the open door, "Dude! I just hit your car." Stupid, stupid, stupid. He was going to drive away. He hadn't seen the damage. I was off the hook. As far as anyone was privy to, except for now of course, The Middle, my pristine accident free driving record could remain unchallenged. The whole driver returning thing happened so fast, if I'd delayed turning around for even 30 seconds to tell The Middle to open his door for air, the driver would have driven away and I would have missed the whole confession. But I hadn't delayed. And it was the right thing to do. Crap!

The guy was actually pretty cool. And he let me know that the car wasn't brand new. It was a 2002. A cop buddy of his had put the dealer placards on his car because he was getting pulled over at least once every three days. "They see a black man driving a Mercedes and think it's stolen." I don't get that logic. I actually wanted to ask him So how is a black man driving a brand new Mercedes different? But he volunteered, "I guess they think it would be harder to steal it from a dealership than off the streets."

While we were in the process of gathering insurance information he said "Oh, this has to be private. I've already got a few points and I have a new insurance agency. Let's handle this privately. Private would be best." He wouldn't even take my info. We exchanged names and phone numbers. He said he has friends who do auto body work and will get a cheap estimate. He said that since there weren't any actual dents, it would mean a sand and buff and a new coat of paint. Whew!

While this post was supposed to be about surviving my first two weeks at my new job, it is this instead. More later when I find out how much this will cost. Oh yeah. And still more when The Beloved sees the nice basketball sized dent in my front bumper.

Monday, February 7, 2011

I'm Old!

Today is your birthday...
Da-da-da-da-da-da-da-da...
Today is your birthday...
Da-da-da-da-da-da-da-da...
Well, it's my birthday too, yeah!

I don't remember who wrote this silly little diddy!

Thursday, February 3, 2011

Sweet Lois Has Her Wings


This little one and her family have fought so hard, but Lois left this earth for Heaven this morning at home in her sleep. Please visit her family here and lend some words of comfort.

My heart breaks for her family. Selfishly, I am scared silly for Jack. As well as all the other babies and their families that I've come to know and truly love through the Down syndrome community. I'm saying special prayers for all of us tonight. We are a family now, connected though an extra chromosome. When one of us hurts or loses one of our babies, we all bleed. Please pray for the family who are missing their little Butter Bean.

I know My Beloved will ask why I'm sad. And I won't tell him. Because he will just ask gently, "Baby, why do you torture yourself? Why do you read these things? It kills you every time." And when I finally do tell him he will say, "Stop reading about these things. It tears you up thinking about it. It's not going to happen to our baby. It won't. It won't!" But that won't lend comfort. And I know why. Because Lois was one of ours. One of our own. And I'm scared to death that one day it will be My Sweet Jack's pictures plastered all over the world wide web asking for prayers for him. I am scared. Terrified. More so than when we got Jack's prenatal diagnosis. But I'm also thanking God tonight for my Ds community. My Ds family. And for all of our babies with Ds.

Tuesday, February 1, 2011

Well Then!

Day two of my new job is completed. It's going well. The bonus is that when I got home, Jack was so happy to see me that he started signing "Mommy" the proper way...up at his chin instead of whacking his splayed hand rapidly against his chest. As always, whether he's beating on his chest or this evening when he used proper form, an excited "Mama! Mama! Mamamamama!" accompanied the activity. It's almost worth leaving him to see how happy he is when I come home. Almost. Not entirely quite worth missing my Little Love.