...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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Sunday, October 31, 2010

Halloween!

I can hardly wait to post pics! Jack had SO MUCH FUN!!! So, there's another teaser. I know...I suck! Soon. Promise. Need ZZZZzzzz's!

Saturday, October 30, 2010

A Project In The Works...

My love and adoration of our Newest Little has moved me to extremes. I have a project in the works to try to make it tangible. I started the first part tonight, with The Beloved along for encouragement and moral support. Part two will be completed in two weeks. I don't want anyone to see it until it's finished...so here's a teaser...
Feel free to hazard a guess in the comments. In fact, please do! To those in the know, these three items are a sure give away!

Friday, October 29, 2010

Walmart #2951 & The Pumpkin Patch

This is Liz on the right, Jack, and Nancy from the Loss Prevention Department presenting Jack with a check for $250.00 for the DSALA Buddy Walk!
"Is this for ME? Can I eat it?!" Thank you Walmart #2951!!!

Then we headed off to the local pumpkin patch so Mommy could attempt to duplicate some of the cute photos people post of their kids at the pumpkin patch. Didn't work out so well. The sun was high and bright and Jack-Snack was having no part of looking up!
"Are you tasty? Can I take a bite of you? I've got one really sharp tooth!"
My little Jammied Punkin with some giant pumpkins.
And a close up...even if he wouldn't look up!

Thursday, October 28, 2010

Jack's Been Certified!

It's official! Jack-Snack has successfully completed his very own Basic Life Support and Advanced Cardiac Life Support class, or BLS & ACLS. Mostly because I had a last minute opportunity to take the recertification class and a distinct lack of last minute childcare; the instructor is a registered nurse and therefore has a commensurate abundance of misplaced guilt and inability to turn away anyone in need and said I could bring him along; and my good friends Auntie Bits and Auntie Dee Dee were also taking the class and helped me entertain Jack. Although, Auntie Dee Dee mostly just laughed at all of Jack's well timed raspberries during the detailed explanation of these life saving procedures. Clearly, he knows a better way to save a life than the drivel we were being drilled with. He breezed through both of his post tests, finishing first, and didn't even copy off of Auntie Dee Dee once! Then he sat back to happily chew his toes while the rest of us caught up! While Mommy got her re-cert cards today, Jack was a last minute add on and a new-cert to boot, so his official cards will be mailed tomorrow.

I'm very proud of him, but he smugly asserts the he wasn't worried! Danged kid!

Wednesday, October 27, 2010

Jack in the Box

Maybe this one above should be Jrunk in the Box!

Tuesday, October 26, 2010

Buddy Walk 2010

Why is it that when Jax crashes his sleepy head into my mouth that he remains asleep, totally unfazed, while sharp pain stabs through my lips and a completely different pain simultaneously ricochets through my front teeth all the way into the back of my brain?

And why is it that I never see that big giant head aiming for my lips? I would seriously prefer that he pull my hair and bite my nose again! Or puke in my mouth or crap on my leg again. Although, to date, Jax is the only one of My Littles who has yet to puke in my mouth. Give him time. He'll get around to it.

Today I got a call from the tire department at Wal-mart. It was my new soon to be good friend Liz. I approached Liz about a month ago about perhaps obtaining a donation for our Buddy Walk. She let me know that all of their donation budget had already been spent for the year, but that she would submit the letter Jax wrote for next year's budget. And then she told me her very personal story with a special needs child. It broke my heart, but it is not for me to share. We were strangers to each other before that afternoon, and I am quite certain that I've seen her while shopping at least 52,000 times. She's seen me as well, I'm sure. Until that afternoon, neither of us had any reason to give notice to the other.

She was amazingly interested in my Jack-Snack, went so far as to tell any of the associates who approached her during our long chat how old he is, his name, his diagnosis, and asked "Isn't he just the the cutest?" Clearly, her associates love her and know her story. The instant she uttered the words Down syndrome, every person she told softened toward Jack, moved a little closer, touched him...melted a little.

During our conversation, Liz said that while she couldn't give us a cash donation, she was quite certain that she could provide a high dollar item to give away if I'd like to organize a fund raiser. I explained about our situation with three special needs kids in the home and therapies coming out of our ears, and she said that she'd speak to some of her associates to see if they might be able to organize a fund raiser to benefit Jack's Buddy Walk goal! Awesome!

I spoke to Liz again two weeks ago when she called about the DSALA tax ID number. Of course she asked about Jack. Knowing her story, knowing how a simple benign procedure had changed all of their lives indelibly and forever, I confided that I was terrified of having Jack's wiener repaired and asked her to pray for him. She prayed a beautiful prayer not only for Jack, but for me as well, on the spot!

Today when I got the call from Liz I was instantly excited because I thought it must be related to the Buddy Walk. I've been feeling a little blue that more of my family and friends haven't rallied around our efforts to contribute, but in all honesty, I can say truthfully that if the shoe were on the other foot just now, we wouldn't have the money to donate to someones fund raiser either. And I have to remind myself that The Buddy Walk is just two days after Jack's first birthday and I think people would rather spend the money on him, rather than for him. The first thing Liz asked me was about how Jack's doctor visit went. I wasn't surprised that she remembered. She's been a kindred spirit ever since she shared her beautiful story with me and the two of us stood weeping in the customer service area at her store.

I wasn't prepared for the even better topic that Liz wanted to talk about! She and her husband have just recently adopted a three month old baby boy named Nathan. Liz wanted to know if I'd be interested in getting our boys together for a play date! A Play Date, people! Oh yippee skippee! This simple suggestion that we have a play date, an occurrence that happens in households all over the world every single day just had me giddy with delight! I would be thrilled to get our boys together to become buddies and I very happily told her so, along with, "Oh Liz! Thank you for that! It means so much to me!"

And the next news was just the cherry on the sundae...she'd badgered their corporate office for a cash donation and she would be honored to present a check to us for $250.00 if Jack and I would be so kind as to come to the team meeting at 9:30 am Friday morning! She said it's only $250.00 and I said "Are you kidding me? It's TWO HUNDRED AND FIFTY DOLLARS!!!" So we will firm up details for our boys' play date on Friday! I look forward to getting to know Liz and Nathan, and I hung up the phone with the biggest smile on my face! Yippee skippee!

Yes, I Know.

Yes, I do know. Patti, if you're reading this, you should look away! It's gross. It is. But you tell me why the only medically fragile member of this household is the only one who didn't catch even a touch of the head cold/flu crap that was floating around all this week that the rest of us were all miserable with!

Monday, October 25, 2010

Yeah, That's What I Get Alright

Not twelve hours after I posted about the hospital job, my registry called to tell me that once again, I am persona non grata. Dang it! I knew I'd been wrench free for too long of a while. At least this time they want to hear my side. I typed it out and sent it to my boss to forward to them. Maybe it's not a wrench this time, but just a socket. Sockets can hurt, depending on where they hit you, but not like wrenches. So if any of you are faith believing, we could use some prayers. Otherwise, it won't just be The Beloved and I going giftless this year for Christmas.

Dang It All!

I'm up past two am due to stress. An inability to sleep, due to stress. The Dear Daddy is working tonight, owing to a bout of stomach flu over the weekend on his part, and missed work. The Girlie is ensconced in our bed, along with every danged stuffed animal she owns, six blankets, and six pillows. And she's peeved at me for getting out of bed to wait for the effects of a sleeping pill taken on my part. I hate sleepers. Ya' just never know if they're going to work or not. And they do nothing for stress, but I have lots to do tomorrow, including shopping for a project for The Girlie, due Tuesday, so I need sleep! Gotta hit the pharmacy, gotta call the electric company, gotta continue the saga with the cable company, gotta be awake for Jack's ST, gotta get some danged sleep!

On the other hand, I was snuggling with Jack while he slept this evening and in his sleep the boy flashes some beatific smiles! They are radiant. The boys face is pure bliss and jubilation. I swear he sees angels, so why not dream about them?

That little fang...it kinda feels like "That's what you get." I was so happy that Jack's teeth appeared to be coming in in the typical progression. Not in the roof of his mouth or the sides of his gums. So, now that his first tooth is very clearly a sharp pointy fang, and not at all typical, I kinda feel like that's what I get for being happy about the typical pattern. I kinda think it's a wrench to my head. A small wrench, but a wrench none-the-less and still painful. And I am beginning to hate the word typical. Seriously. Hate it.

In other news, a hospital I used to work for and then was somehow no longer welcome at called my agency the other day and said that perhaps they had been hasty, perhaps they had been misled by the information available, and would I perhaps like to come to work for them again? Well, this was great news! Not only do they pay well, and they are one of my all time favorite places to work, they also take good care of patients, are up on all the latest techno crap and expensive products other hospitals won't spring for, and the people who work there are great to work with! So I was tickled pink to be invited back! Looks like some of our financial worries are looking up. Until tonight. None of the three hospitals I routinely go to needed registry tonight. Dang it! I needed this shift! And therein lies my stress and sleeplessness. It always comes down to money.

While I was a single starving student and The Beloved was giving me half of his paycheck so I could devote myself to school full time and only had to work weekends, I dreamed of the day when money woes would be behind me. What the heck was I thinking? Unless you're Donald Trump or his ex-wife, money woes are never behind you. Currently, the kitchen faucet handle is tricky and will come off in your hand or clang into the sink and put yet another chip in the porcelain if you're not careful. The turntable in the microwave no longer turns. Both bathroom showers leak. There's a broken sprinkler valve in the front yard that even in the off position still allows water to trickle down the driveway. There's a bad smell when I use the oven. The heater thermostat in our house needs replaced and it's any one's guess if it's actually going to come on with the first try or the tenth. I'd say at least none of the major appliances are broken right now, but that would just be asking for that's what I get.

That sleeper seems to be kicking in. I'll go scoop sleepy little Jack up and see if I can't neck snuggle a smile from him, and then put my sorry self back into bed. I am quite certain that The Girlie is still awake, watching the clock, counting down the fifteen minutes ticking by that I promised her I would return in. And if the project doesn't get done tonight, well, maybe she'll have just a touch of the stomach flu on Tuesday morning.

Friday, October 22, 2010

Hair Pulling, Pinching and Biting

I used to simply adore the way Jack greeted me first thing in the morning. Two hands full of hair and his lips dive bombing my face. It was an even more exuberant greeting when I got home from work in the morning, after he'd been awake for at least an hour. And then Monday morning, when I scooped him out of Miss S's arms, he grabbed a hand full of hair in one hand, a hand full of neck skin in the other hand, and sunk that sharp little fang into my jaw. It was a nasty little surprise and quite the eye opener. Jack was so happy to see me that my surprised shriek did nothing to deter him...I just made sure he had nothing to sink that fang into!

So fast forward to Tuesday when we were getting settled for a nap. After repeatedly removing his grubby little fingers from the fine hairs at my temple, I started stroking his face and saying "Nice. Nice. Soft. Gentle." Then I used his little grabbers to stroke my face, all the while repeating the mantra. And I stroked his face and hair with his hand. After removing his hands from my fine hairs about twenty more times, he pulled a fast one on me. Really fast. He looked droopy eyed so I rested my head next to his and closed my eyes for sleep. And he grabbed some hair and some neck skin and reeled me in to bury his sharp little fang in the tip of my nose. I don't know what hurt worse, the hair pulling, the neck pinching or the nose biting. It brought tears to my eyes and a giggle to Jack's lips. I gave him a firm "NO!" while I extracted my hair and flesh from his paws. And he did it again. This time he didn't laugh. The expression on his face was truly one of taking it in. Seeing what happens. Another firm "NO!" and gentle stroking. And he went to sleep.

Wednesday, October 20, 2010

Peas, Pears and Poultry

Again with the red-eye reduction which works by making the baby close his eyes!


I ran out of chicken, so we tried turkey again. Still not a big hit. Today Jack ate peas for the first time and he loved them! I tried mixing the turkey with a scoop of pears...he swallowed the pears and spit the turkey back out. I don't know how he did it. I tried several times, pears in the back, turkey in front. Turkey in the back, pears in the front. Didn't matter. He swallowed the pears and spit out the turkey. So I tried the turkey. The turkey flavor was great. The texture...not so much. No wonder he spit it out! In ST news, Dr Elaine says that Jack is doing great. His tongue thrust is still prominent, but he's swallowing before he sticks it out, so I reach in and Nuk his tongue after every bite and he pulls it back in. She says we'll get there.

Tuesday, October 19, 2010

Jack Loves a Good Storm!

We recently had two days of thunder and lightning storms. While The Older Littles were huddling in fear, burrowed deep beneath the detritus in the corners of their closets, The Beloved and I sat with Jack out on the front porch swing. For a good twenty minutes solid the night time sky was alight with lightening strikes behind the clouds. Jack's little head couldn't pivot fast enough to take it all in! When the thunder rumbled enough to shake the ground, all four limbs were flying and it was hard to keep him on my lap! Finally, the Beloved buttoned him up into his jacket so he couldn't wiggle away! With every rumble of the thunder, Jack took a deep breath and hollered back as loud as he could! Like his Daddy and I, Jack loves a good storm! I so wish I had a picture of Jack's little bald head poking out of his Daddy's jacket! It was sweet.

Monday, October 18, 2010

Anniversaries

I was reading a post on BabyCenter the other that really struck me. It was basically stating that for many of us, the anniversary of finding out is so very significant. Sometimes even more so than the baby's first birthday, their other children's birthdays and sometimes for some, even their own wedding anniversaries. And it struck a chord with me. I don't remember the exact date of quite a few fairly important events in my life. I have to count backward to remember what year I graduated from nursing school. I don't think I will ever forget the exact date and time that the doctor confirmed Jack's diagnosis.

Anyone else feel this way?

Other posts were dedicated to discussion about both Mom's who found out prenatally and those who didn't get a diagnosis until birth...and how much they are still struggling with Down syndrome. Even years later. I am so very glad that I am completely alright with Jack's Ds. So, my question for all you Moms out there...is this the honeymoon phase? Will I struggle more with this in the future? Is this a spinning wrench with my name on it intent on colliding with my head?

Saturday, October 16, 2010

Ummmmm...



I hadn't realized that this was The Girlie's first diaper change! And the diaper did look odd...but I didn't realize what the difference was until she said, "Ummmmm...Mom? I think I might have put it on him backwards!" And there you have it! Good job, Peach! Best diaper job, ever!

Friday, October 15, 2010

Another ST Evaluation

So back we go the medical facility for Jack's ST evaluation. They were waiting for us and we were shown right in to Linda, the ST. She watched Jack eat a bottle and took an extensive history. She also agreed that the pneumonia back in May was more likely aspiration than pneumococcal. When Jack was finished eating he spent his burping time charming her. In the end, she agreed to recommend a modified barium swallow study. And so we now have yet another referral to Children's.

Thursday, October 14, 2010

The Wiener Doctor

So today was our appointment with the pediatric wiener doctor. Okay, so he's a pediatric urologist, so he doesn't just take care of wieners. I was getting everything together for our 3:15 appointment when the phone rang. It was the wiener doctors nurse calling to ask if we could come now. So I rushed us out the door and arrived rather early for our appointment. And we sat there for an hour and fifteen minutes. And when we got in to see the wiener guy, he took one look at Jax' junk and said, "I can't treat a baby this young. I'll refer you out to Children's." Great. Just great.

On the other hand, while we were sitting in the hall twiddling our thumbs, the ST department called and said they had a cancellation for tomorrow, Friday, at 3:00 pm. Could we take that appointment?

Saturday, October 9, 2010

Well Then...

The evidence is right in front of me that my Little Girl is growing up. It's been coming for a long time, but I've always been able to look away. And now I can't. In fact, the Little Buds that were are now burgeoning. And it kills me. They are the first thing I see when she walks into the room. Also, I'm sure, the first thing every one else sees when she forgets to wear clothing and comes dragging her sleepy self out of her room every morning. You see, she's a nudist. Always has been. And she hates it when I remind her to wear clothes. So we struck a deal. She won't come out in her birthday suit and I won't say, "Get in your room and cover those up!" She hates it when I say that. She also hates it when I say boobies. So...if she doesn't respond to the fact that my head is spinning 360* the first time I remind her that she's almost naked...I say, "Get in your room and cover up those boobies!" That earns me her most spiteful slanty eyed glare, but it also gets her moving. We've been waging this battle for a few years now, and finally she is starting the dressing process before she peeks her bed-headed, grouchy-mouthed, Middle-Little-Radar-Directed-Heat-Seeking-Venom-Missile-Shooting self out of her bedroom. The war that is waged in our living room every morning between The First Born and her Successor has gotten old. Very, very old. But that's another story.

I guess I finally had to face the fact that she's maturing a few months ago. She is a sensory avoider. She hates anything that stimulates her skin in even a benign way. Like tags. Lace. Straps. A hair caught on the inside of a blouse. Jeans. And so for years she has worn leggings during the colder months. And finding leggings that fit her waist and don't come up to her knees has been a trick. For the last few years I've bought her women's size Danskin leggings to meet her length and taken up the waist several inches to match her bitsy middle. But last July she turned 'just so' and I was treated to a view of what her womanly shape would some day be. Those soft and non-skin stimulating fabrics just hugged her too well. So, clearly, those are a thing of the past! For all of this summer she has worn last summer's shorts. It's getting more and more difficult to find anything in the stores for little girls that don't make them look like hoochie-mama's. I refuse to buy my little girl hip huggers, or low rise, as they call them now. What ever they call them, they are not for little girls. Since last years shorts fit, we went with them.

I did buy a few pair of low rise jeans a few years ago. Once the waist was taken up to fit her waist, they were a nice, decent, mid rise fit. That didn't come up past her ankles. And she refused to wear them. "They're too scratchy. They bug me. All I can think about is how they feel on my waist." I told her to wear them for a while and she'd get used to them. The first day that she wore them to school she came home looking like a thunder cloud with napkins protruding from her waist band in various places. "Mom. I did what you said. But all I could think about was how bothered my waist is. It bugged me ALL DAY LONG. I couldn't concentrate! It's too itchy!" So back to the leggings we went. But that was before she had hips and her butt took shape.

On the last weekend before school started, we scoped out Old Navy. Grandma Emmie said we might have luck there finding some jeans. Grandma Emmie, at my behest, also had the talk with her about her body changing and how she needed to start dressing accordingly. I also enlisted the help of The Other Mommy in these negotiations. It was all stuff I'd already said to her, but since it came from the Other Mommy and Grandma Emmie, it was worth listening to. It had more merit. More value. It meant something.

We enlisted the help of a sales lady. She looked The Girlie up and down and pulled down several styles of size 0 and 1. For good measure I also sent her into the dressing with a size 2. For good measure. Had I been her sixteen year old older sister, I would have insisted that she buy the size 0's. However, I am her Mother, and the vision that I beheld coming out wearing size 0 skinny jeans was right from the bowels of every Mother's nightmare from hell. Simultaneously, my heart stopped, I stroked out and I'm fairly sure I wet myself. They were an absolute NO! Back into the dressing room for the size 1's. Those were better. A little gap to the waist but not too much. Some room in the seat. This was good. The size 2's ought to be a perfect fit! Okay, a perfect fit for me. Not for her. The waist was way too gappy for her. And as for the seat, it was so loose that I truly could have stuffed another one of her in there. They wouldn't do. Back to the size 1's. After wearing them around the store for 30 minutes, sitting, standing, bending, squatting, she was satisfied that the waist would not gap further and I was tickled flipping pink that the seat did! So we spent a little over $100.00 on five pair of size 1's Dreamers that she will wear without argument and that both I and her Father can live with. I'm fairly sure that her first date is going to kill me.

Wednesday, October 6, 2010

Are You Kidding Me?

While people with Down syndrome are at a much lesser risk for developing solid mass cancerous tumors, mothers who have a baby with Down syndrome are thought to be at a 23% greater risk for developing breast cancer. Where does that leave me with a strong maternal history of breast cancer already? Up the creek...

This study says that women under 50 but over 30 with their first pregnancies are at an even higher risk. And the fact that I had a 46-chromosomed baby before my extra-chromosomed baby only ups my risk. What about two 46-chromosomed babies before the extra? Does that up the ante again? Is it exponential?

Has anyone else heard about this? Of course not...we're too busy researching and therapy-ing our babies, being super mom to eat a decent meal or shower in a timely fashion to worry about ourselves!

So what am I going to do about this? Ummmm...pretty much nothing. The damage I've done to my body over the years cannot be undone. My pregnancies had their own magic potion to guard against ills. We have 3 differently-abled children. With that being said, I will probably never be allowed to die. Or retire. Ever. So there!

31 for 21

I'd planned on posting every day during October. It's called "31 for 21" where you post Ds facts or related items every day during October. And I have failed. My comrades in the Ds blogging community are doing great...so I will let them.

For Ds this month I am immersing myself in the baby sign language videos. That I can do! Volumes 4,5 & 6 arrived yesterday and volume 3 is on it's way via parcel post. My friend Beth (who knows about this stuff!) bought our first volumes 1 & 2 and I am reviewing them too!

So...if I am skinny on posting I will hopefully be fattening up my ASL arsenal! Also, trying to fund raise for our Buddy Walk next month! If I'm not blogging...that's what I'm doing! I will post pictures though!