...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, July 18, 2010

Milestones or Millstones

Okay. So I knew there would be delays. I knew that. Jack may not walk until he's well past 2 years old. He may not speak before then. He may not crawl until he's a year old. I knew all of this and told The Dear Daddy and The Olders all about it while I was pregnant with Jack. I knew. I was prepared. But does it still have to suck so much???

Little Nella who is 10 weeks younger than Jack, for crying out loud, is already sitting up. Briefly. And really, so is Jack. Very briefly. But Nella is sitting up long enough that her Mommy, Kelle, managed to get pictures of her doing it. (No offense Kelle. I love your family and I read your blog as soon as you post. It's my pick-me-up!)

So far, Jack is pretty much just like any other baby. Except that he sleeps through the night and I can always get a smile out of him just by getting into his line of sight! But then come the comparisons. And while I know I am not supposed to compare Jack to my other babies, how do I not? My Olders were sitting up pretty much by six months. They both crawled everywhere by nine months. Jack has been rolling everywhere long before they did, but I'm pretty sure that while The Girlie and The Middle Little both took off walking on their first birthdays, Jack will likely...still be prone.

Okay. Time to slap some perspective into myself. Jack is trying really, really hard to crawl. He's got the motions down. He's got the head lift. He gets his knees under himself. He gets the darling little diapered butt so high into the air. He gets his elbows underneath himself and lifts. And he's very exuberant about all of it. Just not all at once. He's still too weak to get it all going at the same time. So...maybe he will crawl by his first birthday. That seems like a more realistic goal. He's got four months. But it's not Jack on the clock. It's me. Yeah. Me. Sad, huh?

On the other hand, I don't want to ever say "Jack can't..." I think the more grievous error would be to set the bar too low. I have expectations of My Olders. I have them of Jack. And they are much the same. The degree to which each individual child succeeds will be measured by how high they set their own bars. I've said to my kids since they were tiny that they would graduate high school and go to college. Not sure how we're going to pay for that yet, but I digress. I can see The Girlie announcing that she will not go the college route, much more than I can envision it for Jack or The Middle Little. I'm seriously considering making both of The Olders go to nursing school. If they go right out of high school, get finished and discover that they don't like it, they will have degrees that they can bounce from into other areas, and at the very least, an income they can support themselves on. They will be young enough to fund higher education for themselves in some area they do want to pursue.

But what do I want Jack to be? I don't know. I'll have to see what his interests are. When he decides what to be when he grows up, he will let us know. The Girlie wants to be either a veterinarian or a "Massager person." I don't know how that will pan out. She lacks the discipline to study for veterinarian school (And The Beloved and I lack the funding!) and as a masseuse she could make a bunch of money. Maybe she will marry well and adopt all the babies "Who have no one else to love them," as she has often said she will do. The Middle Little I can see being an amazing graphic artist. Or a rock star. Or a computer wizard. I've seen his mind at work and he is more like my dearly departed Youngest Older Brother than I want to admit. That boy will build the better mousetrap. Reinvent the safety pin. Sell you something you don't need at three times the price it's worth, all the while making you feel great about it! My challenge with him will always be teaching him to do the right thing, not the easiest. With a child with autism, just how the heck do you teach that the right way is not always (or even often) the most expedient or effective way? It boggles me.

Anyway, the point is...what? That I'm a little blue that Jack isn't leaping over barriers and breaking records? He's just a baby. This is my problem, not his. Right now he is quite successful at being a baby. He charms me. And he charms his bad little self! He's gotten quite the attitude as of late. He is no longer content to let out a few yips to show his discontent. He still gives the warning yips and then moves right along to the all out howl. That's progress, isn't it? And the sweet little baby coos and vocalizations? He still does that. He's doing it right now in fact, in a supported sit over my left arm and atop my left thigh while I type one handed and simultaneously balance, counter balance and plain out reposition him every twenty seconds while he does bending and stretching acrobatics trying to leap to a bruised noggin on the tile floor. I'm trying to get him to burp. He's holding out! Time to lay him on the floor...

Okay, so I laid him on the floor to play and he promptly flipped over onto his tummy. And then. He pivoted! He pivoted! Twice! To get the toys in front of him! I wish I had it on video, because I was only able to tell his PT and OT that I thought he may have pivoted once, about an inch.

Okay...so back to the cooing and sweet vocalizations. He has another thing he loves to do. For about 30 minutes several times a day, I recline my rocker and sit Jack on my chest in a supported sit while I gently rock back and forth and tip him to and fro. This is building core strength and it's easier on my body than sitting on the tile-over-cement-slab-floor-covered-by-a-thin-carpet to balance him atop a giant ball. Jack loves this game of balancing and pays intent attention to my mouth while I make a variety of sounds. I firmly believe that the maneuvers he does with his tongue during this time is the reason he is able to close his mouth and keep his tongue inside much more than just a month ago. This is how he learned to make raspberries on purpose and I swear on all that is chocolate, every time his Daddy picks him up, he raspberries his Dad and spits in his eyes! He doesn't do this to anyone else. Just his Daddy!

And still I have not gotten to the thing he now loves to do. While sitting on my chest, he moves his mouth and tongue around and tries very hard to mimic my sounds. Eventually he starts yelling. Yes, yelling. And that becomes the new game. I give up trying to make sounds for him and start yelling back at him. He smiles. Then he takes a big deep breath and lets loose with all that he has. He leans forward, gets his arms rigid out to his sides, gets all red and scrunched up in the face and by the end of his breath, he's making short little staccato bursts of "Ah! Ah! Ah!" to squeeze every last sound out. And then he sits up, giggles, and then raises his eyebrows as if to say, "Whatcha got to top that? Bring it!" And then it's my turn to "yell" at him while he giggles and wiggles, all the while trying and succeeding to balance inside the protective circle of my hands.

So I guess I've typed myself out of my pity party. And as my dear baby boy is now asleep, cuddled so sweetly in my arm while I once again type one handed, I look down into his angel face, kiss his brow, and in my heart I go to my knees and thank my God for sending me this boy. This one.

He is not a millstone about my neck. He is all that is good and pure.

4 comments:

Carrie said...

The comparing can be brutal--but when we look at our kiddos for them--life is good. Good job talking yourself out of your pity party!

Your little ones are adorable! I look forward to following along!

Melissa M said...

Claire and I yell at each other too! She loves to talk and on some days, loves to do it quite loudly. :) Claire wants to sit so bad too, but just doesn't have the strength yet. We're working on it though.

The comparissons are hard though. I have a niece 3 weeks older than Claire. She is sitting perfectly, and it honestly hasn't bothered me (yet). I'm sure it will, but so far I've been able to look at my niece and just see what fun things we have coming up next.

Jen, P.T. from Houston TX said...

Hi there Tracy, I followed you from Kelle Hampton's blog because I read that you are looking for that loop duck toy that Nella had. I am a Physical Therapist from Houston, TX, and I know about a very similar toy to that one, the only difference is it has a cube/block in the center instead of a ducky. Here's the link if you are still in the hunt for it:
http://www.manhattantoy.com/product/206923/200930/_/Winkel
It is called the Winkel, manufactured by Manhattan Toy Co.
Hope this helps. P.S. Based on my career experience, I know how easy it is to get discouraged when you see others that have achieved milestones faster than your own has. Chin up, Mama, he'll get there, it may take him some time but he will.
Jen :)

Tracy said...

Jen!
Thank you so very much! I ordered two! I can't tell you how many people have been hunting for this toy for us! I really appreciate that you took the time to find it for me and Jack! Hugs!