...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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Tuesday, November 30, 2010


If you haven't visited in the last 24 hours, there are new posts with new pictures hiding between the rants you've already read. I've gone back to the middle of the month to post pictures I was too tired/lazy/busy to post before! Just scroll down!

Friday, November 26, 2010

It's Official!!!

Guess who's holding his own bottle??? Thanksgiving morning when The Baby Head was snorfling in his cradle, I got up and got him a bottle and then took him down the hall to change him in his freezing (seldom used) nursery. Then I popped him into bed with us where it was warm and snuggly. Well, let me tell you, having not seen the bottle, this didn't sit well with him and he pitched a little mini-fit! He's gotten quite vocal about his likes and dislikes and he will tell you about it at a seconds' notice! Once he saw the bottle was coming toward his mouth he grabbed it and shoved it in there and went to town! He finished the whole thing without dropping it!

This is later in the week. You can see that he's still sleepy.

He's supposed to eat sitting upright, but I had to get a few pics of this new skill before his belly got full enough to upchuck. He still has to be held while eating, to keep him in a sitting position, but that's perfectly fine with me! It's so nice to have two hands free and he's really happy with his new ability to look around and still keep the bottle in his mouth! In truth, Jack could have been holding his bottle months ago. He has to be held while eating anyway, and I use a modified cradle hold with his arm behind me. The Dear Daddy has been teaching him how to hold it on his own, and Thanksgiving morning he was starving and decided to show off!

Remember this outfit? The one from a year ago??? Okay, well it really was 11 months ago, but who's counting? It still fits and he's able to move around in it!
But I'm thinking that by Christmas day, it will probably, finally, be too small!

National Lampoon's Christmas Vacation

So we watched our Thanksgiving staples! First up, Chevy Chases Christmas Vacation! Next up, Planes, Trains and Automobiles. We gotta watch it. Once is an event, twice is a precedent, three times makes it tradition!

Clark is opening his Christmas bonus and it's not what he expected:

Ellen: What is it?
Clark: It's a...one year...membership...in the Jelly of the Month Club.
Cousin Eddy: Clark, that's the gift that keeps on givin' the whole year!
Clark: That it is, Edward. That it is, indeed!

Clark: If any of you are looking for any last minute gift ideas for me, I have one. I'd like Frank Shirley, my boss, right here, tonight. I want him brought right here, with a big ribbon on his head. I want to look him straight in the eye and I want to tell him what a cheap, lying, no-good, rotten, fore-fleshing, low life, snake licking, dirt eating, inbred, overstuffed, ignorant, blood sucking, dog kissing, brainless, d%$#less, hopeless, heartless, fat-assed, bug eyed, stiff-legged, spotty lipped, worm headed sack of monkey shit he is! Where's the Tylenol?

In the end, after Cousin Eddy actually kidnaps Clark's boss and brings him home tied with a big red Bow, Frank Shirley adds 20% to what ever Clark's Christmas bonus was last year.

That's what I'm hoping for now...cuz times are getting scary lean. 20% of what we had last year would be a step up. Not even 20% on top of last year...just 20% more than right now. Pray for us please, if you have a mind to.

This rant cracks me up every time this movie is on. Which is good, because while I've always wanted to write this down, in case I ever need it someday, it took about 25 pauses and rewinds to get it all just right! We're having a Clark W. Griswold holiday.

Post script: thanx Holly W for the comment! I couldn't agree more! And I appreciate the prayers! More about our situation in a coming post.

Tuesday, November 23, 2010

Chicken Soup for the Soul Children With Special Needs

Great Grandma Ross gave me this particular book a few years before The Middle was actually diagnosed as having autism. While I appreciated it at the time, and told her so, I have never read it. It's kicked around this house, from pillar to post, so to speak, without ever having it's cover parted. Until tonight. I'd dug out a new James Patterson book I'd bought at Costco and hadn't yet read, and got all comfy on the couch with my coffee, and realized it was not the new book after all. And in trying and failing to find the newer James Patterson, I found the Chicken Soup book instead. I blew off the dust and I started to read.

And before I'd even gotten through the acknowledgments, before I'd read word one of what are sure to be heart rending stories, I was weeping. Yep. Weeping. Kinda like I am right now. Quiet but deep weeping. I guess because I own it now. Special Needs Children. It's my life now. My reality. When The Middle was diagnosed with the first few acronyms, The Girlie had already collected a few of her own. I won't go into the personal hell that I lived in when she was first tagged as learning disabled, that's a story for another time; but when The Middle was finally formally diagnosed with autism, it was at long last a place to start from. A place to begin to make reparations, to learn different methods to teach, to try to rewire the thought processes that had gotten jacked up in his blue prints. It was a filthy and rough worn combat boot right to my teeth to read it in black and white, but still, it was a place to jump from here to there. A place to start. A place to begin. A place from which to issue the primordial bloodied battle scream and to take back my son from his own private hell.

When The Girlie was later diagnosed as also being on the spectrum, it wasn't nearly as difficult, but still hard. She didn't have the behavioral issues that made day to day life a navigation through murky treacherous waters like The Middle. And as The Middle was better able to control himself and the raging and the melt downs and the despair started to decrease a bit, and then more so, life got better for everyone. And it continues to get better. There is the quite reasonable expectation that both of The Olders, with therapies and exercises and diligence to cause and effect reasoning and the teaching of life skills, along with plenty of love, despite their diagnosis, will grow into responsible, productive, happy, capable and independent individuals. There is something, many things, to be done to ensure their success and happiness, both now and in their futures.

And then came Jack. Jack's Down syndrome isn't what I was hurting over as I finally opened this book. It was thoughts of The Middle's daily struggles that had my grief and fears spilling out in liquid down my cheeks. But Jack is the one who tipped me over the edge. I don't know that this makes any sense. I can only say that my days of grieving over Jack having Down syndrome are done. Finished. He's just fine. (Don't quote me on that ~ I may have to revisit this idea.)

Let me try to explain it this way: Jack has Down syndrome. He always has. He always will. Nothing I can do, or have failed to do, can influence this fact. With Jack, everything I do with him is going to be beneficial. Every therapy. Every experience. Every hug, kiss and snuggle. It's all up from here. So, I'm kinda off the hook with him. As long as I do my job and do it well, he will be the best that he can be. My toughest job with him will be to outlive him. I cannot die while he lives. I have to be there for him, in how ever much or little he needs me to be. When he's taken his final breath, I can die. And yes, I am quite sure that a broken heart can and will kill me. When I'm 107.

And there's still the huge question with The Middle. Have I/am I doing enough? Is he getting what he needs? Am I/have I been diligent enough? Provided enough? Loved him enough? Played with him enough? Disciplined him enough? Taught him enough? Hugged him enough? Do I/ have I said yes often enough? Held firm to no often enough? For all the stages of his life so far, these are the questions that never go away. And there's no measuring stick at the end of each stage to show me if I've come up short with him. There's no roll of the dice where you pass GO! and collect $200.00. There's no litmus test to say, yeah, we're good. Advance to the next stage of growth and development. There's also no Uh-Oh...better change this. This thing right here. No, not that, THIS! Jack progresses. Not in leaps and bounds, but it's visible progress. With The Middle, all I can cling to is that while he's mastered so few of his own behaviors, while he still struggles daily, sometimes hourly and even minute to minute to reign his own little self in, he is progressing. And at the end of the day, no matter if it's been a great day or a pretty crappy one for the records, we come together at the end for hugs. Snuggles. Bedtime tuck-ins. Sips of water. Just one more kisses. And it's not so much that the questions are still out there. It's more that the answers are still out there. But I need some litmus now. Before it's too late. Before I screw him up. Because~I~Don't~Know. Too many questions. Too many variables. Not enough certainties. Zero answers.

So I read one story in the book so far. Ironically, about a girl with Down syndrome. I will go back and read more. I will. And maybe I'll discover the answer to the question hidden in the wording: Why is it called special when everything about it is so damned hurtful? Because that's where I am right now, sobbing over the keyboard, feeling like the world is on my shoulders to get it right the first time, for them, especially The Middle.

And I am no closer to knowing why Jack having Down syndrome makes The Middle having autism so tragic. He had it before Jack was ever a dream. Maybe it's the juxtaposition. Like I said before...I don't know.

Friday, November 19, 2010


As in, Is that the best I can expect? Excuse me while I have a WTF moment. And yes, I said that, in spite of the fact it may offend some of my more lady like readers' sensibilities. I am really stunned. Really dismayed. There's a blog that I follow, as do many of you, that is viral in it's popularity. I initially started following the blog because of the author's amazing and poignant account of her youngest daughter's birth and the surprise diagnosis of Ds. It was moving like few things I've ever read. I've stuck around because the pictures are beautiful and some of the stories are kinda funny. It's nice to see another Mom's slant on this lifelong career called Motherhood.

When I read that this author's blog had been nominated for Best Special Needs Blog, I just kinda shook my head. I even considered emailing the author to tell her why I love her blog, but also why I would never even think of it as a special needs blog, much less a Ds blog; nor would I ever consider voting for it in that particular category. Why? Because to coin a phrase, What have you done for me lately? Or ever, really? This blog is dynamic and fun. But the author mentions Ds about as often as I change the oil in my van. I empty my vacuum canister more often than this author mentions Ds. Or the struggles, questions, challenges and mind boggling endless therapies and techniques, frustrations and head scratching that comes along with it. Recently, the National Down Syndrome Something or Other gave this particular author a big honor for advocating for Down syndrome. Really? Why? What has this author done? Where was I? Did I miss it? Where was the advocacy? Seriously. I'm not trying to be sour grapes or bitter apples, but just where is the advocacy? Because clearly, I missed that post.

Then last night I had no work yet again, so after The Littles were in bed, I caught up on my blog reading. As always, I read my top four favorites first, this particular one being #4 in my favorites list. And I was stunned to see that this blog won the award for Best Special Needs Blog category. There were so many other categories this blog could have easily and deservedly won. Best Photography, for one. Best Photo Topics, for another. Most Funky. Most Unique Writing Style. Best Blog About Motherhood. Most Fun Ways to Have Fun With Your Children. There are so many wonderful things about this blog, but I have to say, I would have been less stunned if it had won something like The Best Farmer's Almanac Blog. Which really is funny actually, because the author has, in fact, just started a small backyard garden.

So please, write me a comment and tell me what the heck I'm missing. I've never gone to this blog with my questions, concerns, or when I'm needing advice. I've never encountered a problem related to Ds where I've remotely, much less immediately thought, "Oh, I'll get the answers on what to do..." on this blog. I still love this blog. When I'm not working or exhausted, I tune in almost daily to see what the author has been up to, turn away a little sad if there's nothing new posted. Sometimes I just cruise through older photos that I've already marvelled at dozens of other times.

For this blog to win this award kinda makes me feel like I'm back in high school and I'm supposed to vote for the Prom Queen. And the nominees for Prom Queen don't even know who I am. They don't know my name. They wouldn't smile at me if they sat in a circle around me in English while they copied off of my test. It just feels like high school all over again. I'm just sayin...

Uh-oh, uh-oh-uh-oh!
Uh-oh, uh-oh, uh-oh, uh-oh!
"Four years," you'd think for sure...
"That's all I've got to endure."

And then when you graduate...
You take a look around and you say:
This is the same as where I just came from...
I thought it was over!
Awwww, that's just great!"

And you still don't have the right look,
and you don't have the right friends,
Nothing changes but the faces,
the names and the trends...
High school never ends.

"I've seen it all before!
I want my money back!"
~High School Never Ends
~Bowling For Soup

Post Script: So there's no mystery which blog I'm talking about. That's pretty clear from the comments and the many private emails I've gotten off-blog. It's up for Overall Best Blog now. That I could actually get behind, and I might even vote for it myself, because it is a great blog. But it's still not a special needs blog. Even if it irritates people that I said so.

Thursday, November 18, 2010


"I'm strong to the finish cuz I eats me spinach! I'm Popeye the Sailor Man!" Toot-toot!
I tried to find plain old creamed spinach but I guess it's not made any longer. Earth's Best had spinach with potatoes, and Jack seemed to like that just fine!

Wednesday, November 17, 2010

Barium Swallow Study

Baby Head was really quite happy to be wrapped up in pillow cases and taped to a Bratt Board! And he was pretty amazed with the table sliding around and the giant x-ray machine received quite a few "pats" as it rotated above him and got close enough to touch.

I think he's either waving to the "camera" or signing "Mama, come see this!"

"Mom! They saw my guts! In here! Right here! Where I'm patting myself! Did you see?"

His little socky feet sticking out just did me in! Too funny!

I don't have the official report yet, but after 1.5 ounces of barium, there was no evidence of reflux. The doctor turned Jack onto both sides and even had him upside down for a time, but there were no significant findings. The doctor said he could continue the study and see if Jack eventually experienced reflux, but that would mean more exposure to radiation, and we could still miss it happening. I tend to think that with so little volume in Jack's belly, we were just missing it anyway. He doesn't eat 1.5 ounces for a meal. On the one hand, a leaking weak sphincter is what it is. On the other hand, wouldn't it be more prone to leak with a greater quantity of volume behind it? If you blow up a latex balloon and then let the air out, there will remain a certain volume of air that is under no pressure to escape. I think this study may have been more revealing if Jack had some actual volume in his stomach. But that would mean he'd have to consume a lot more barium, and be under fluroscopy longer. I truly think that if I'd known they were going to give him so little fluid and allow so little time for him to reflux, I probably would have skipped this procedure altogether.

Tuesday, November 16, 2010

Mom, Come Cry With Me

Last night The Littles and I all watched Toy Story 3 on DVD. I'd heard it was a little sad at the end. The Middle has already seen the whole movie, at his public school no less. His public school where they no longer say the flipping Pledge of Allegiance every single day, but now only say it "When we have the flag in our room," but where the curriculum includes Disney/Pixar movies. But I digress.

As the movie was nearing it's end, I ask The Middle, who is snuggled up with his blanket and is using my thigh as his pillow, "Are you sure there's a happy ending?" Yes, Mom he says, in his most how many times do I have to tell you? voice. And when the end hits, well almost the end, because it really is a happy ending, The Middle, The Girlie and I are all sniveling our eyes out with snot running down our faces. Okay, maybe the running snot is a bit of an exaggeration, but you get the picture. And then suddenly The Girlie is too embarrassed/cool/ hip to cry with us and gets up to leave. "Where are you going?" I ask, "Come back and cry with us!" To which I receive the steely-eyed squinty combination look/glare.

So tonight, while watching the movie again, for the hundredth time, and it is ending, suddenly The Middle squeaks out in his best brave big boy bravado, "Mom, come cry with me!" So I did! The tears and the snot ran freely!

Lab Draw, Biter Biscuits & Basket O' Baby!

At the labWe started off bright and early this morning by getting Waby's labs drawn. Not a tear was shed and Jack seemed more interested in the activity than bothered by getting stuck with a needle! He didn't whimper or do the pouty face either!

Next up was a new treat: Biter Biscuits!

They were a hit!

Then for a nap in the laundry basket!

I cannot express how much I love this boy!

Monday, November 15, 2010

Jack in the Box and Other Terrors

The Dear Daddy was working late Tuesday night, and I was too tired/lazy/stressed to feel like cooking dinner. We needed a few things at Wally-World, so we headed out. First stop...food. The Girlie hates Jack in the Box, The Poddest of all Things Pods hates Taco Bell. I hate drive thru. There's a Jack in the Box in the Wal-mart lot. More importantly, there's a Taco Bell right across the street, and even more important than that, this particular Jack in the Box is L-shaped and we can sneak in Nachos Bell Grande with extra meat, cheese, beans, hold the tomatoes and sour cream please, and a large raspberry iced tea that The Pod likes but isn't served at Jack's.

So we get in and I ensconce The Girlie in a far table of the L-shaped dining room, hidden from the registers by the bathrooms. She watched Jack and tore into her Nachos while The Pod and I went to the counter and ordered. So far so good. The Pod goes to get the Dr Pepper that The Girlie has requested. I get strawberry soda. Only, after three sips, it's mostly soda. I speak with the manager who says he'll switch the lines after this current customer. So I go back to the table hidden in the L-shaped dining room behind the bathrooms and resume eating my Supreme Chalupa, also secreted in from Taco Bell. These are pretty big, so mid-way through it, I go see if the strawberry soda is working yet. Nope. Fine. I'll get orange soda instead. So The Pod announces that he needs to use the bathroom and gets up to go. A count of about 30 seconds later, just as I'm stuffing what was the overly large last bite of my contraband Chalupa into my mouth sideways, I hear screaming. Hysterical screaming. Coming from the bathroom. In the all too familiar pitch and timbre of The Middles' screaming voice.

Up I leap, nearly choking on the Chalupa, pivoting around the corner to the men's bathroom. Up every one else also leapt, in that same direction. Four diners, two people waiting in line. While my brain mentally hyper-drive calculated the potential penalties of bursting into the men's room in a public place, my feet continued forward anyway. However, The Middle came flying out of the bathroom, red faced, horrified, hysterically screaming, with tears literally flying out of his eyes like in a cartoon. "There's a man! There's a man! Mom, there's a man in the bathroom!" You can guess what kind of visions popped into my head. "A man doing what?" I ask while trying to contain the situation. Well you have to know that his vocal hysteria peaked the interest of everyone, even those who hadn't risen with the initial alarm. "Sitting on the toilet!" came his response. "What was the man doing on the toilet?" Surely there was more to this scenario to cause such a hysterical response, and again, you can guess what I'm thinking. "He's just sitting there Mom! He's a big fat black man just sitting there!" I'm trying to get him to lower his voice and usher him back to our table in the L-shaped corner behind the bathrooms loaded with our contraband Taco Bell food, while I ask again what the man was doing on the toilet. The few people who were still interested got completely bored with the drama when he shouted at the top of his lungs, "He was going to the bathroom!"

So I rally him back to his chair, calm him down, and encourage him to resume his meal that was actually purchased at Jack in the Box. And a few minutes later, sure enough, a very large, very fat, very dark skinned black man emerged from the bathroom. He was looking daggers at my son. He looked at me. "What's wrong with him?" he asked, but surprisingly, not in a cruel way, more of a "Is he alright?" kind of way. I said simply that he has autism, he was unprepared to see someone doing their business and that he was fine now. As if this wasn't enough excitement for the evening.

So a few minutes later, The Middle decides he still needs to pee and heads for the bathroom again. Only now, every one that witnessed his melt down has already finished and left, and there are a whole new batch of customers either waiting for their food or waiting to order. And this time, the hysterical and rapid screaming is about ten octaves higher than in act one, scene one. And much more rapid-fire than the first time. He comes flying out, red faced, hyperventilating, screaming, more cartoon quality tears literally flying out of his eyes into the air. "He's still there! He's still there! The man on the toilet is still there!" I usher him back to the table while a whole new batch of patrons are wondering what the heck the man on the toilet is doing to inspire such mayhem. One patron goes into to check, comes out, sits down at his table. As The Pod is finally calm, I ask if the man who asked us if he was alright was the man on the toilet. "No!" He bellers for all to hear, "He's still in there sitting on the toilet!" I'm pretty certain that who ever was working on the loading dock behind Wal-mart 1/4 mile across the parking lot heard it all.

Finally, an extremely tall black man comes out of the bathroom. He's shaking his head at me, but decidedly not in a nice way. He's drinking a soda, which I can only presume that he took into the bathroom with him. Eeeewww! I ask the Pod if that is the man on the toilet. No. And there's no way he's going back into the bathroom. Or that we're ever going back to that Jack in the Box. As we're gathering our debris to leave, two ladies from Wal-mart who were there for both complete curtain calls approach to give me the sympathy looks and ask if The Pod is alright. I pretty much politely blew them off on the way out the door.

The Dear Daddy laughed hysterically while I related the story. Once we were home and calm (and yes we skipped the Wal-mart trip) I spoke with The Pod about exactly what had happened. Apparently he'd wanted to use a toity, not a urinal. He pushed on the door, it swung open and there was the man. You know the rest. So now there ensues discussion on every angle in which this scene can possibly repeat itself. What he will do the next time this happens. How he will politely and calmly excuse himself and quietly walk away. Why the heck isn't this crap in the "What to expect" books? Or Dr Spock? Good Housekeeping's Guide to Early Childhood? Somewhere??? Anywhere??? Dang!

Much later that night as I was trying to knock off to sleep, I started giggling. I started trying to imagine this whole scenario for the poor man sitting on the toilet. Not only is he trying to do his business in a public bathroom, but suddenly there's this little blonde white kid barging in on him and then screaming at him. And he had to have heard The Pod's loud animated explanation through the thin walls. And once he thought he was safe to proceed with his private activity, the same little blonde white boy is suddenly there again, only this time he is even more hysterical, screaming faster, and screaming at decibels only slightly lower than what dogs and space aliens can hear. He never did emerge before we got the heck out of Dodge, but I have a secret fear that he was so traumatised by my son that he is still sitting there, hours later, even days later, since I am actually posting this on Thursday night, his butt muscles so clamped shut that he'll never poop again. Poor man! Too bad I don't have a picture of that!

One Year Check Up

Today was Jack's one year check up! He got bored waiting for the doctor to come in, and discovered the crinkly exam table paper.

43 cm head circ

18 lb 7 ounces

27 1/4"

all labs were normal, including the thyroid level
wearing a size four diaper
wearing 6-9 month clothing, some 12 month sleepers with looooong legs hanging off his feet!
eating 8-9 ounces every 3-4 hours
eats 4 oz veg, 4 oz fruit, 2.5 oz meat per sitting
he's rocking on hands and knees
he has a supported sit for up to a minute, now and then as long as five!
he has one sharp tooth! Sometimes he also has a flat topped tooth, but it doesn't stay out!
he babbles all the time!

he makes all of the vowel sounds
b,d,g (guh),m,n,p consonant sounds quite often
he still makes a sound like someone's stepped on a seagull or a squeak toy
he still has my heart in his little grabbers

Sunday, November 14, 2010

Get It In Writing!

This is a long post. Long. And I promise there is a photo at the end. Please don't skip ahead or you'll ruin my punch line!

When we were expecting The Girlie, The Beloved started talking about doing another thing that he'd always wanted to do. He wanted a tattoo. But I thought it was just talk. I get the baby, he gets a tattoo. He never said what he actually wanted this ink "art" to be, and he never actually said that he was going to do it. Ever. Or now. Today.

When he called and said he'd be about an hour late, I really thought nothing of it. It wasn't an uncommon event. The fact that he gave me a heads to the delay of his arrival time was enough. And when he got home I was in the kitchen making dinner. And there was a look in his eye. Something in his expression. An elevation to his brow line. A hint of a snicker to his lips. A glint of mischief in his eyes. And then I noticed his posture. All of this noted in less than two seconds flat, while he poked his head into the kitchen. And he knew that I knew. "What?" he asked. I glared at him. I'd show him what! "Just let me see it," I said. "See what?" And I glared at him again. I was pissed. I did not want him to get a tattoo. I hated that he would mark his body like that. That he would mar it. With something so entirely permanent. And it didn't help that with every word out of my mouth, every steely eyed glare, every line of my face screaming NO! the gleeful jubilation in his eyes, in his entire being, just grew to enormity. And the best, for him, was yet to come. I had yet to see just what bit of "artwork" he'd chosen to forever violate his body with.

At first glance, My Beloved looks every bit the big scary biker. He wears Levi's. He wears motorcycle tee-shirts unless we're out to dinner or some other function. He wears biker boots. He has a mustache. And yes, he really does ride a real motor cycle. (Harley!) I like his thick curly hair to be just touching his shoulders, but for the last decade he's liked it trim and above his collar. And he's a big guy. My friend Ann still lives in terror of him until he jokes her into fits of laughter. My lifelong friend from school days still thinks the myriad of scars on his arms are from gang fights. Really? For the record, white guys don't get into gang fights! At second glance, he has an easy smile, a friendly jovial nature, and eyes bright with wit and laughter. He's a great guy. A good man. But you don't want him angry with you. He's intolerant of ignorance and doesn't suffer fools. Or ex-boyfriends. Or actors. Liberals. Arrogance. Thieves. Liars. Druggies. Cheats. People who ridicule or belittle others. Especially children. So I didn't expect him to commemorate The Girlie's growing life with hearts, flowers and unicorns. What he had chosen just made me sad. Sad. He won't let me tell you what it is, but I blame our Little's love of the macabre, their embracing of bones, skulls, ghosts, ghouls, plastic rats, spiders and all things Halloween on his tattoos!

By the time The Pod was baking, it was a forgone conclusion that he'd get another tat. I get the baby, he gets inked. And he told me this time that he was getting it done. When I saw it, I thought it was fitting for him, and at least this hideously ugly bit of ink was to celebrate a boy, not my delicate little girl. While I was no more fond of this tattoo, it was his body after all, and once he had that other one, why not this one? Why not just plaster them all over his entire body? Why not get "sleeves" or some on his neck and face? Why not? WHY NOT? Why not just shave his head and tattoo his scalp? He'd already defiled himself, so why not go all out? I didn't like it at all, but he was happy with it.

It was no surprise that with the news of Hannah's pregnancy, The Dear Daddy started thinking about another design. I will forever be grateful that time and finances were prohibitive, and that he wasn't able to get her tattoo done before we lost her. While that tragedy remains the single most binding together event of our journey with each other, strangely even surpassing our births, seeing her tattoo every day would just be painful. Hurtful. I hope and pray to my God in Heaven that our bond, our ties, our tethers to each other, do not require any more strengthening by the very particular and singular method of profound loss.

And here is where Jack and Hannah's lives seem to cross yet again. The design he'd had in mind for Hannah was to be forever put away, unfulfilled, never to be. Because Hannah was to be our last. There would be no others after her. And this is when I realized that The Beloved's ink was something more to him than a tattoo. It was personal. It was a living breathing thing. Fluid. It was so much more than expression of self through body art. I get the baby, he gets inked. And when we lost Hannah, The Beloved put away the design he'd made out of love for her. He tucked it away, far, far away, from his heart. And then Jack announced the fact of his being. And then the news of his diagnosis. Since Jack's pregnancy was so very precarious and tentative, we wanted to wait until his actual live birth to set his own mark on the canvas that had become of My Beloved's skin. Jack's surprise pregnancy, his diagnosis of Down syndrome, his miraculous birth, all set the stage for what was to be Hannah's design, to be just so fitting, so perfect for Jack. If I were allowed to tell you what his/her/their tattoo is, there would be a collective swelling, a chorus, one voice of "Aaaaaawwwwwww" echoing across the world wide web. It is just so succinct.

As we enter the home stretch of Jack's first year, The Love of My Life has stopped waiting for a shoe to drop and finally got his tattoo. I went with him this time. Jack came too and was the perfect little play date for the artist's seven month old darling little boy, and some mommy-chat time for me. I marvelled at his son's ability to sit up and crawl on his own, and his Mommy was bowled over that Jack says "Mama" and makes raspberries with perfect conversational punctuation! And instead of hating this tattoo as I used to The Girlie's, just accepting what would be The Pod's, I actually helped with the design and placement of this one. And it was good! It was right! And it is entirely personal and beautiful. No, I'm not going to say special. Ewwwwwwww!

While I was at it, working on this third and final of The Littles' tattoos, I started playing around with another design. I discovered just how entirely personal and intimate a tattoo can be. My goal was to incorporate all of Our Littles into one design. It wouldn't be obvious to the casual observer, but it would be meaningful. I had an idea. Then I had another entirely different idea. And if I could blend the two designs, it would be perfect. But Hannah, dear, dear sweet Hannah, thoughts of her kept hovering, lingering, wanting to be heard. Remembered. Included. And I figured out how to give voice to her as well. And it's good that I did, because this tattoo was keeping me awake at night. Evenings for two weeks were spent at the computer trying out different fonts, arranging and rearranging, changing, sometimes discarding an idea entirely. I was dreaming about it. Do you ever have those not-deep-enough sleeps before a big event, good or bad, where the same monotonous and endless dream keeps playing back over and over in your head on an endless loop and you never quite find a solution to the problem before you start the dream again? It was like that. It went on and on. For days. And days. And on the final day, the very last afternoon before this tattoo would become permanent in ink that evening, I figured out exactly what I was looking for. It was finally just right and I could feel it. I showed The Beloved and he said that he liked it, really liked it...but could it be done? That was the big question. But the tattoo artist said Yes, we can do that! And here it is...

Yes. That is my arm. My right arm. Where I can easily fold it over my heart. What started out as a desire to have something small, special, intimate and personal to me, for me, the simple word Beautiful in tiny, discreet blue letters near my wrist, bloomed into this. Go big or go home, right? Yeah, I clearly had what The Beloved lovingly calls a Clark W. Griswold moment. The immediate allusion to Jack is obvious My Beautiful Miracle T-21, but the underlying pink lettering refers to every one else. It's supposed to be hidden a little and not jump out at you. It's supposed to be noticed while reading the blue lettering, as in "Oh, there's something else here...underneath." In case it truly is as obscure as I was trying for, or if it doesn't photograph well, this is what it says:

Faith. Trust. Pixie Dust.

And this picture is right after I'd gotten it done, so it's still quite livid. As in LIVID. And painful. Stingy. So the pink will fade some. And it is much clearer in person...the blue is not blurry. Eventually (in 3 weeks) I'll add a spray of Pixie Dust over the entire thing, and much later (When I've forgotten about the pain of this 2-step torture) a little Tinker Bell may also reside above and to the left of the F. We'll see. Cuz this really hurt! As in it really %^$&#*@ hurt, hurt!

Faith for The Girlie, because she has so much of it. Faith in her Heavenly Father. Faith in her earthly Father. Faith in her baby brother. Faith in goodness and the belief that people will show their goodness if given the chance, maybe encouraged a little. Faith in hope, eternal hope. And for some reason, Faith in me.

Trust for The Middle Little. Because so much of his little life is built on trust. Trust in the doctors. Trust in those who guide him at school and in our home. Trust that he will grow from a good little boy into a good man. I sometimes just have to Trust that what I do with him is right, and even more importantly, not wrong. Trust that while The Dear Daddy's methods are often very different from mine, that there is always a bigger picture that he's aiming for, often one that I don't see until he shows it to me. The Middle Little doesn't yet have the capacity to understand God. To him, God is this giant, amazing, all powerful entity that you can Trust to make everything alright, but it's still best if you just leave Him to it and not try to get His attention too often. And, again, for some reason, he has an amazing Trust in me. Me. A woman and mother who once fell to her knees in utter despair, here in this room where I type my thoughts, siphoning my soul to the world at large, and angrily screamed at God, demanding that He show me how to mother this boy. Yes, Trust is the right word for him.

Pixie Dust is for Hannah. A new version of Return To Neverland was released in November 2007. The month and year that Hannah would have been in our arms if she'd made it to term. One of the songs on the sound track, "I'll Try" poked holes into my heart and let some of the grief spill out. It spoke volumes to me, for so, so many reasons. Try to go on. Try not to cry. Try to keep it all together while my heart was so broken. Try to have Faith. Try to have Trust. Try to believe in something, even if it was only Pixie Dust. And like Pixie Dust, Hannah will always be elusive and magical, something felt but not seen, real and intangible at the same time. All it takes is a little Faith, and Trust, and Pixie Dust.

And there you have it. In writing. I have marked my body. Marred it. Defiled it. Forever violated it. Entirely permanently.

And I love it!

I started to title this post "Tattooed White Trash," because my Dear Daughter hates the fact that I have done this to myself. She'll get over it. Maybe when she's 45 and wants to forever commemorate some miraculous event for herself. Like the birth of three babies that medical science said were never meant to be. Or in Jack's case, shouldn't be. Until then, Que sera, sera.

Our Buddy Walk was today. I will post about that later...for now I'm going to go cry in the bathroom, because this post was emotionally charged for me, and very difficult to write. Ciao!

Friday, November 12, 2010

Jack Turns One!!!

Jack and his presents!

"Oh my! Are these really all for me?"

"I like this birthday and turning 1 stuff!" Thumbs up!

The big cake with ugly dark blue writing.

Jack's mini cake with a better color of blue!

"What's up?"

"Ohhhhh...what's this?"

It took him no time to dig right in!

The candle didn't last long...

While The Dear Daddy and I sang Happy Birthday...

...Willie used the candle to stab the cake!

He still hasn't tried it yet...and this is probably the 30th picture!

The aerial view.

Still hasn't tried it...

...so I put some on his lip!

...finally tasting it...

...and it's gone!

Now he's discovered that he can feed it to himself!


"Oh, this is good!"

"So is this hand!"

Another aerial view of the carnage!

Jack had a ball playing with his birthday cake!

We were falling all over ourselves laughing at his antics!

Eating it off the tray.

And I think that's how he got the other eyebrow!

Patti ~ If you are reading this ~ I promise, with my right hand clutching my entire hoard of chocolate over my heart, that no dogs were involved in the clean up! Promise!