...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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Monday, March 28, 2011

Bu-Bah-Nuh

That's what he said! In case you didn't catch it, he was trying to say Banana! Yep, my boy tried to say banana.

Some more recent favorite sounds, shouted in piercing decibels and then modulated to mere whispers:
B-B-B-B-B-B-BEEEEEEEEEEG-G-G-G-G-G-G
B-B-B-B-BEEEEE-B-B-B-B-B-B
BEEEEEEEEEG-BEEEEEEEEG-BEEEEEEEG
B-E-E-E-E-E-E-E-E-G
BEEE-BEEE-BEEE-BIP!
BIP! BIP! BIP! BIP! BIP! BIP! BIP! BIP! BIP! bip-bip-bip-bip-bip-bip
He really likes this combination of sounds and it goes on for hours! He played around with variations of P, I, E, D, G, B but one clear favorite finally emerged

PEEEEEEG!

Funny, funny boy!

New Posts

If you haven't been here in a while, I can hardly blame you...I haven't been here in quite a while! I am here in spirit...just too tired and worn out to be here in body! I've written several posts, and I promise to get pictures inserted with them soon! Please keep checking back!

Tuesday, March 22, 2011

RATS!

I surprised the kids with pet rats last week! The Middle Little named his Emily...she's the one with some tan. The Girlie named her ratty Squeakers...she's all white. Rats are actually very clean animals, are smart and easily trained, and they are highly social. They make very good pets and can live up to eight years...unlike hamsters who are guaranteed to break your kids' hearts by dying within two years.

Monday, March 21, 2011

This Month's Pedi Appointment

After Jack's last appointment and the new asthma diagnosis, we were told to come back in a month to check his pulmonary status. Which really, was fine with me so we could track his weight with the switch to soy milk. So, first up was that fight. At this pedi on February 18th, Jack weighed 20 pounds and 14 ounces. At his cardiology appointment on March 3rd, he weighed in at an even 21 pounds. Today he weighed 20 pounds and 4 ounces. He measured 29 1/4" but he'd lost 10 ounces. I informed the doctor that I had not switched him entirely to soy milk, that on my best judgement and the advice of Dr Elaine, his SLP, I was alternating soy milk with formula. He maintains that Jack needs to switch entirely to soy milk. I argued. He said there were more calories and grams of fat and protein in soy milk, to check the labels and I'd see for myself. Well, I already thought this was crap, otherwise, we'd be feeding our babies soy milk instead of formula when we can no longer provide breast milk. With the evidence in front of me in a 10 ounce weight loss, (which is really 12 ounces if you count the cardio weight!) when I got home I decided to take his advice and check the labels. It's easy to see why he might think that, even though he should know better. The nutrients listed on the soy milk are per eight ounce servings. The nutrients listed on the formula can are per 100 calorie servings. Duh. That's five ounces. And there are far more nutrients and grams of fat and protein in 8 ounces of formula. Why do I know this and his doctor doesn't? Crap! I wrote it all down on a piece of paper in neat little columns and compared formula to Traders Joe's organic soy milk, Wal-mart's Great Value organic soy milk, and even went into our local WIC to write down the nutrients in their brand of organic soy milk. I plan on rubbing his face in it when we go back in a month. We left that argument off with me refusing to change to full soy milk and stay on the alternating soy and formula and work like mad to get more solids into him. And I will quietly give soy milk in every third bottle instead of every other. Which brings us to his pulmonary status. I am so sick and tired of this doctor telling me that I am wrong and that I am not seeing what I am seeing. At last month's visit I asked for a refill on Jack's albuterol, because he was using it for a lot of wheezing at night. That got us the Q-Var inhaled steroid and a refill for the albuterol. At this visit when the doc asked if Jack wasn't doing better, I reported that no, in fact, he was having a greater number of wheezing episodes, particularly at night. Any of this sound familiar to any of you asthma Moms? Knowing that this doctor has a penchant for denying the obvious, I listened to Jack's lungs before he came into the exam room. He clearly had wheezing in the right lower and middle lobes, inspiratory and expiratory, as well as some rhonchorus sounds in the left mid and upper areas. The doc said he was clear. I said to listen again, and of course he refused. So I pulled my own stethoscope out and had another go at it. And I pointed and said Right there. Wheezes. And here and here. Rhonchi. His answer? "Those are not really there. They are referred sounds from somewhere else in the bronchial tree." Okay, yeah maybe, but doubtful, and even so, they are referred sounds from somewhere else inside my son's bronchial tree. So again with the arguing. I wanted nebulizer treatments for the wheezing at night. For the episodic wheezing I can hear from across the room at night. I finally wore him down and he ordered saline by nebulizer to help with his thick secretions while he's teething. And finally, while he was at it, he finally said I might as well give the albuterol by nebulizer too, and ordered it. So back we go in a month. The nebulizer arrived the next day with all the little saline bullets and albuterol liquid and another Q-Var. Jack's a happy camper. On the up-side, Dr Owen, Jack's cardiologist said that he still has the open holes, hopefully they will close by his next visit, he's doing great, come back in four months.

The pedi said he thought Jack might have a sinus infection and said that his right ear was slightly inflamed. I already knew that, because I have my own otoscope and found the ear inflammation last night, but if I'd brought it up myself instead of letting the doctor "find" it, sure as shootin' he would have denied the obvious. He prescribed Amoxicillan. I wanted Augmentin. He said no. I said Augmentin had done so well on his two previous infections. He said no. I said there's Amoxicillan and Clavulanate in Augmentin, why not go with what we know works? He said no. So we have Amoxicillan. And there you have it. Our doctor fun for March. NOT!

Friday, March 18, 2011

The New And Improved 'Too!

Sleeves rolled up and getting it done... Lili pads and cattails... The Girlie took the pictures, and had the lens on zoom, otherwise you'd see a little bit more of Matt. This area in the fold of the elbow is called "The Ditch, because it hurts like a @&$#*" And here it is!!! This is my left elbow where the doctors left some severe scarring when we lost Hannah. I think I've mentioned before that I appeared to have track marks* any junkie** would be proud of. Now I don't! I have a cute little orange frog with blue spots, catching his breakfast! "...Underneath the ink on my tattoo, I try to hide my scars from you..."
P!NK, I'm Not Dead,
from the I'm Not Dead album

And here's the almost finished story-in-a-picture. I can go back in three weeks to have Matt fill in more purple to the powder puff and add some pixie dust!

*scars caused to veins when junkies inject drugs into their bodies
**junkies are sad souls who get high injecting illicit drugs directly into their bloodstreams

Wednesday, March 9, 2011

Ah, The Fires Of Hell

...are burning my toes. Let me explain.

Today, I had the distinction of being That Person. All you Moms of special needs kids have met That Person many, many times in your children's lives. You know That Person. It's often a woman who puts on the genuine or feigned air of caring. She's often got a pleasant smile. She's assessing your child. And dang it all, she should realize that every thing she utters about your child is a question, an indictment, a judgement and a sentence. Every inflection, every facial expression, every lilt to the brow, change in pitch, even her posture, will be a judgement of you, of your worth, by way of placing judgement on your child, a worth or value on your baby.

And today I was That Person. I felt my toes burn as I began the assessment of a beautiful child cuddled happily in the arms of his loving mother. It's the questions. So, Mrs. Smith, does Little Bobby help you dress or undress him in any way? Does he push his arms into sleeves or pull up the legs of his pants? Can he put his socks on by himself? No. Of course not. Little Bobby is 18 months old and has Down syndrome.

I saw the posture change. How can a woman rise to the defense of her child and simultaneously buckle under the pressure in her shoulders. How does she lower her shoulders in sorrow in the exact moment her spirit to protect shines brilliantly? How does that work? Did I look like that hearing those biting words? How many of you recognize yourselves?

It killed me to see the smoldering shadow of hurt and fear dart it's path behind her eyes before she smashed it down and told it to shut up! She answered in a clear strong voice while burying her lips in her child's hair. My eyes burned, threatening tears. I'm sorry. These questions are asinine. I hate that I just asked you that. Of course he isn't doing these things. And of course, this is NOT the first time you've gotten the drill. I have baby with Down syndrome and I'm finding that the number of nurses who have any special needs children is a rare thing in the home care arena. She asked about my child, his name, his demeanor, how happy he'd made us while she hugged her child tighter then felt at ease to hold him a little looser. A little surer. A little safer. In the course of discussing our boys and in the general camaraderie of shared chromosomes, I got my stupid questions answered. Every single one. All without making this beautiful Mom and wonderful little boy feel attacked, made small, judged, undervalued, injured or ready for battle. Instead we celebrated the accomplishments our children are making. Laughing about their antics. Comparing the similarities in them to ourselves, to their Dads, to their siblings, to their friends.

And I do here-by swear on all that is chocolate, I will never approach this admission intake process ever again wearing the skin of That Person. I hope Her skin itches.

*Do the Dads hate this person as much as us Mommies?

**I'll edit this for spellling and grammer when I am not so tired.

***Hahahaha...spellling and grammer!

Sunday, March 6, 2011

New Stuff

This is what Jack's been up to just this week:

He's pulling up to stand against furniture and the couch (3-6)

He's formally crawling in full quadriped (3-4)

He transitions to sit often now

He transitions to crawl

He sits up nice and tall if he has something to hold onto

He pushes my hands away if he doesn't like something

He transitions to/from kneel to sit to quadriped

He's taking actual steps from point A to point B while supported by furniture

He has his first molar! All four points are showing, still surrounding a puddle of pink gums in the center. It's on the top right and will soon be joined by a canine on the same side, and sharp points are poking through for both of those teeth on the top left! His poor little gummies are mush on both tops and bottoms.


What happened to my baby?

Much Ado About A 'Too

Tattoo that is! Without further ado, (story to follow) here it is, fresh and wrapped in plastic! I can hardly wait to take the wrap off in the morning!


And here it is today! Of course the colors are more vibrant in person, and especially so against the backdrop of my inflamed tissues, but that doesn't really show as vividly in the photograph as it does in real life, either.

I've been perusing fairies, faeries and fae for a few months now, trying to find just what I wanted. In the end I found a powdery puff faerie in one place, (looks like a faerie wearing a dandelion) a posed faerie in another place and wings in vivid rich variegated reds and browns under fae, and printed them all out to come up with my own design. Then The Beloved said, "This isn't going to fly." I thought he meant Matt couldn't do what I wanted, but no, he meant it technically. "No faerie can fly with these wings. The wispiness looks nice, but they won't hold air to allow the faerie to fly." What? Really? Who is this big grown hulk of a man speaking casually of faeries and fae? But yeah, that's what he said. Then he reminded me of another drawing I'd clipped from the 'net and said I'd have better luck variegating the colors that I wanted with some more substantial wings. So back to the drawing board I went until, madly scrambling until I'd come up with essentially what now resides on my arm! All in the hour before we were supposed to leave to go see Matt.

I'll have to go back next week to get the dandelion looking portion of her body straightened out to be more round and symmetrical. Apparently, white pigment is a heavy metal and along with being immensely more painful than other colored pigments, it also inflames tissues more easily. While it wasn't so prominent within an hour of stopping, while Matt was embedding the white pigment into the tender flesh of my arm, the area ballooned up and was beginning to distort the shape. While The Beloved stepped out to go buy me a soda, I asked Matt how much to add two or three solid white tiny 1 1/2" dandelion fairies at a later date. And that leads us to a bit of a back story...

Way back in October when The Beloved was still in shock that I was actually contemplating getting a tattoo, and then again in late October when we'd made our appointments to actually go through with it, he said very gravely, in my response to having asked him if he was okay with me being inked, "As long as you don't get carried away with it." Because really, he knows me better than I know myself.

When Katie, our former ART gal stopped by yesterday morning to visit, I showed her the moon and we excitedly discussed tonight's festivities of getting the faerie added. She said, "Wow, Tracy, I remember when you were still so antsy about getting a tiny little tattoo and if you should do it or not!" And I said, Oh I know! And for a good two months after the pink and blue were done I would still look at my arm and could hardly believe that I was seeing it there on my own body! But I love this tattoo! And I can't wait to get the faerie added! It's almost become a hobby now! I glanced over at The Beloved at he gave me the look. You know, that look. The one capable of saying an entire phrase and thought in one facial gesture "There! That. Right. There! That's was I was talking about!" But he said nothing aloud and just watched with an entertained smirk while I yammered with my friend. It was there though. That vibe in the room. The one that says we'll be having some sort of discussion about this topic later. And he's not being an ass, and he would never dream of telling me that I can or cannot do something...but like I've said before, he knows me better than I know myself, and knows just how easily I can get carried away with something. He saw the crazed look in my eye. I think the buzzwords for him that made his heart go pitter-patter was when I said It's almost become a hobby now! So, when The Beloved returned with sodas in hand just in time to hear Matt quote me a price and ask, "So you want two tiny little dandelion looking fairies in all white?" The Beloved said incredulously "You're getting more?" and I said Or three, here, here and...here, The Beloved gave me that smirk again. Shook his head. Handed me my soda. Sat down in the corner. Said nothing more.

In my defense, I have to tell you, this round of defacing my body was a breeze. It was so much less painful! Matt did a few outlines and finally commented, "How are you liking this so far? I have a new machine. It seems to be much less painful." And I was loving it. It was so much better than all the other times. This time it felt exactly like I was being rapidly stabbed with a tiny little micro needle about a zillion times per second. All the other times it felt like Matt was levering a rusty 1" chisel against my flesh and trying to forcefully pry my skin off of my body with it! Matt had a few colorful descriptors of my more graphic expressions during the last tattooing episodes, which he quoted back to me in a sing song voice, but that's another story...

So in the car on the way home, I was still amped and excited that my new tattoo didn't hurt, and excited about how vibrant it is, and exactly what I'd wanted, and I couldn't shut up about how much fun this turned out to be this time, and that it didn't take very long this time. The Beloved said, in his sarcastic-but-trying-to-be-diplomatic way, "Well, you didn't have to make him stop fifteen times so you could take a break from the pain this time!" but that only started me up again on how awesome that new machine is and how it didn't hurt much at all! Seriously, I couldn't shut up! He asked several times, with a big goofy grin, "So you like it? You're happy with it?" and I said Yes! I love it! It's a pretty far stretch from the tiny little word 'beautiful' I'd originally wanted up near my wrist, but I'm really happy with it! Oh My Gosh!!! Look at this! Yes, I tried to stretch my arm into his line of vision while he drove through dark streets Matt put a little faerie bubble, a bit of Pixie Dust flying out of the fairies upturned hand! Look at that! Can you see it? Can you? Can you? Huh? Of course he couldn't see it. I could barely see it and it was right there on my arm! He'd look when we got home, he said. But his grin said he was really happy for my delight!

Back at home I was rounding up all my clip art and practice drawings to throw them away, when The Beloved asked what exactly I'd wanted to add next, hedged with the phrase "I thought adding the faerie was going to complete it and all you would be doing from here on out would be touching it up now and then." So I handed him the sample drawings and asked if he didn't think two or three tiny little dandelion fairies wouldn't really compliment the scene. Because, really, it has become more of a story board on my arm. While I'm at it, I think a couple of these lily pads along the bottom would look good. "And a frog too? With his tongue whipping out to catch a fly!" he offers sarcastically. But that led to a discussion of my left arm.

I'd already asked Matt if he couldn't do something to cover the horrid scarring I was left with in the days following the final curtain falling on Hannah's story. It resides on the crease in my left arm, and years after the tissue damage and swelling have gone, I am left with what looks like a junkie's track marks. I don't wear short sleeves to work, ever, even in summer, because it looks exactly like I've described it as. I look like a junkie. So when The Beloved sarcastically suggested a frog on a lily pad, I put my arms together and said, I might just do that. Right here. I've been trying to figure out how Matt could fix this, and that might just work. It will tie this tattoo to that one and won't be something different. "That could work," he says amicably, "but it might also get you started on this arm." And again with the look. He reminded me of how upset I was when he'd gotten his first tattoo. And he recounted almost word for work the whole ranting tirade I'd gone on, even after all these years have passed, ending with my fear that he wouldn't stop until he'd gotten full sleeves.* He was afraid I was getting carried away. He was afraid he'd come home one day to find I'd decorated my body with sleeves.* So I assured him that aside from covering Hannah's scars, my right arm was the only canvas on my body that I had any intention of turning into a tapestry. I promised. And once that was out of the way, he happily agreed that my right forearm was turning into a story to tell. Once he was assured that I would hedge my creativity sometime in the very near future, we started talking lily pads and frogs. I haven't told him yet, but I think a few cattails and a little pond under the lily pads would look awesome! Especially on my left arm crease!

And besides, even if tattooing has become significantly less painful, The Beloved has nothing to worry about here because it is still no less a very expensive art form! So far, all of my work has been paid for by the methods of barter and comp, but the two (or three) dandelion fairies and the frog and lily pads (and pond and cattails!) will be coming out of my own very shallow pocket! Having to save up for the art work will be as powerful a deterrent as any thing else could be.

And now I will say adieu! I have to start on the post about Jack's trip to the cardiologist and all of the new recent naughtiness he's been up to, with the proof of pictures! Stay tuned!

*Tattoo work down both arms, ending at the wrist, like sleeves on a shirt.

Signing Time

Today my Little Jack Snack signed "more" ten times for Dr Elaine! Of course, I was not here to see this miracle as I was out busily earning a living, but I got to read about it in her report. I am clinging to the happiness and pride that he did it, and trying hard not to dwell on the ugly fact that I was absent when it happened. I'm trying to think of it as practice...because in due time, the ultimate goal for any child, especially a special needs child, is that he will excel on his own, out in the world, where the cheering section is absent and perhaps only he will be the proud witness to his success. That's what I'm telling myself anyway...

Saturday, March 5, 2011

Bloggy-versary

Happy Blogiversary to me! Happy Blogiversary to me! Happy Blogiversary to meeeee-eeee! Happy Blogiversary to me! It's been one year since I poured over my journal and started this blog. My first post ever was So Why My Little Stinkerie? Thank you all for reading, and for becoming part of our baby's beautiful new life! It's been a real heartfelt pleasure to have you travelling this road with us!