...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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Friday, May 27, 2011

New Skills and Abilities

I've suspected for a few weeks that Jack is transporting items to and from one place to another, mostly because when he's the only one awake and playing on the floor, a toy will be here with him, and the next thing I know is that the same toy is now over there, and Jack's left the room for the front room, the hallway, or better yet, hanging on the baby gates to the kids rooms and hollering at them to wake up and come play. But today, oh today in my foggy sleep deprived over stressed haze, I watched my dolly boy crawl and transport his beloved butterfly across the floor with him in a very grubby little paw. Yippee!

He also self fed himself a Nilla wafer this evening, All. By. Him. Self! Yeah! Rhetorical, I know...but so what? He fed HIMSELF!

Monday, May 16, 2011

New Pictures

I've gone back to May 1st and posted pictures. Please, do go marvel at what my son has been up to ~ don't miss Mother's Day ~ it's a crowd pleaser!

Sunday, May 15, 2011

What IS this?

Every now and then, part of one or both of Jack's palms get bright red and lasts for about an hour. Today, both palms got entirely red, up and over his fingertips, and they were extremely warm and rather puffy ~ plump, if you will. There was a slightly raised edge outlining the red around his palms. It lasted for about six hours today. It didn't seem to bother him in the least ~ he's dreaming while I snapped this picture. We've done nothing new. No new soaps, detergents, cleansers, pets, carpets or anything else I can think of. Any ideas? It's very curious.

Saturday, May 14, 2011

Thursday, May 12, 2011

18 Months!

Willie is 18 months old today! What a journey it's been! I could spend hours and hours staring at the screen trying to type words to describe what he means to me...but if you're a Mom, you already know. Don'tcha? Do you ever find that your special needs children occupy a slightly...more layered area of your heart? Not better, not deeper, certainly no more loved than your other children...just more...fast? Elemental? Immediate? Inherent? Penetrating? Your feelings for that child more...intrinsic? More connate? More utter?

I've been struggling to define just what Willie means to me that is different than my other two cherished babies. It alludes me. Ever since that first day of knowing, even before the positive pregnancy test, and waaaay before the positive ~ make no mistake, I mean shout-it-from-the-rooftops POSITIVE! ~ amniocentesis, Willie has had his adumbration sidled up to my heart, buried into my soul, my very being. But do I love him more? No. I do not. I love them all equally, but very differently. The relationship is different with each child. Just as I am sure their relationships with me are all different. Should I feel badly that they might each feel a different kind of love for me? A different layer of love for me? Then why do I feel almost sacrilegious trying to define what I feel for Willie? I don't know. Like the definition itself, the feeling of guilt defies me.

But that's not what this post started out as! It's supposed to be this:

Willie has a new tooth, on the bottom right, several spaces over from the next one. I don't know which one it is yet, and I won't know until it reveals it's shape, but it's #7 for Willie!

He's been cruising along furniture for a week now! I finally got to see him do it myself, even though The Dear Daddy and The Darling Daughter have been telling me he's done it for a week now!

I've already posted a gazillion pictures of him sitting up tall!

Willie once again weighs 21.04 pounds (21 pounds 2/3rds ounce!) and he is 30" long.

He is still wearing size 6-9 and 9-12 months clothes, and wears a size 4 diaper.

He can sign "more" and "all done" and Miss Katee taught him to high five!

And lest I imply that he's all sweetness and light, I must tell you, the boy has learned to pitch a monumental fit when every little thing does not go his way. This includes dropping a toy, being put down before he's ready, being put into his crib before he's ready, having anything taken away from him, the Mommy-dog walking away from him, the ball rolling away from him, his bottle getting away from him, that it might be Tuesday, or the clock struck ten or whatever...if it displeases him, he screws up his face all squishy and squinty and lets out a howl that hurts the coyotes' ears. And turns red. Very red. Limbs all out straight and rigid. A palatial fit to be sure. It's kinda comical that he can spew such wrath, but I bet it won't be for long.

So, sorry I waxed all sappy...didn't mean to. The boy has stolen my heart. I'm just sayin'...

Post Script: Toothlette #7 is a molar!

Tuesday, May 10, 2011

More Sitting Up Tall

Willie is fascinated with anything that has fabric straps or handles, and in addition to my work bag that is hemorrhaging field charts, he has quite a good time with all of the totes brought in by his various therapists - never mind the toys, he wants the straps on their totes! And yes, I realize that my glider is hemorrhaging it's foam and stuffing, but that poor chair has nursed two babies, and valiantly spent endless hours pumping breast milk for Jack.

See how tall and straight his back is? I am so proud of this milestone!

Can you tell?

One toy in each hand!

And yes, Auntie Bits and Auntie Dee-Dee, that is the outfit you bought him last summer!

One day soon I will see about re-stuffing and upholstering that poor glider!

Monday, May 9, 2011

Sitting Up Tall!

Not only is he sitting up nice and tall, but he's also using both arms to play with a toy!

Love this view of his features

And right now, this is my hands-down favorite photo...such joy! I can still hear his gleeful laughter as he flings Woody around by his ankle ~ and I know Woody feels extremely loved!
Please just focus on the baby...if I'd known he was going to do something cute, I would have put some effort into his surroundings!

Sunday, May 8, 2011

They're Up To No Good

Mother's Day including some new skills, thanks to The Dear Daddy

I wish I'd gotten a picture of the triumphant grin Jack was wearing when he finally scaled the steps to land safely on the couch...
...but he knew where the "big kid" toys were and made a bee-line for them!

Post Script: Sorry for the poor picture quality. On the next trip 'up the steps' Jack only needed help with the first knee up...after that he scrambled to the top lickety split to get those toys at the top!

Happy Mother's Day

My Mother's Day this year started off with this!It's everywhere!

Yes, that's poop in his hair. Green poop, no less!But the rest of the day was terrific! And seriously, just look how tall he's sitting up!

Saturday, May 7, 2011

Biter Biscuits!

He's finally able to bite off chunks and chew them up - and he LIKES it!

Tuesday, May 3, 2011

Crouching Dog...

...or bruised lip?Sorry...that's the only yoga term I know!

"My Happy Place" (Katee's Story)

I am the nurse, Katee, that Tracy spoke so kindly of in the post entitled, "She's A Keeper." I was flattered by Tracy's remarks and appreciative of the opportunity to discuss my previous encounters with other Down's Syndrome children and their families. It has been refreshing to be in Tracy's home, entrusted with her precious Little Stinkerie, while she is working, and see a family truly embrace the gift that Willie is. My story begins a year ago, when I was placed in a 7,000 square foot home in a ritzy gated community, in the Santa Clarita Valley. My patient was a 3 year old twin diagnosed with DS. I was excited to work with her but quickly my excitement turned into anger and resentment. The family was using me to disclude their child from family outings, because according to them a child with DS can't appreciate Disneyland or trips to the zoo, beach, etc. This family was fortunate to have money at their disposal, mom was afforded the privilege of being a stay at home mom and chose to only play mom to her two "normal" (her words, not mine) children. My heart was conflicted. I felt like this child needed me. Because unlike her family I enjoyed outings to the park or mall. I proudly introduced her to friendly passersby. Eventually, her mom got rid of me, presumably because our relationship became so intense and our views were worlds apart.

My next client was unfortunately much of the same, but with an added twist. I was instructed to keep this beautiful child in her 10 x 10 foot room. She was approved for much needed therapies that she never attended because mom wouldn't make the 10 minute drive to the clinic. I did my best to teach her fine motor skills, teach her to walk, etc but I was frequently instructed to stop and turn the TV on for her instead. I did my best to educate the parents as to her capabilities and encouraged them to set goals and assist in her journey to achieve them only to be met with resistance and then later get blamed for her delays. It is said that opportunity knocks but for me it rang...

And brought me to Willie......

Here I am now, in my happy place as Willie's nurse. I am a part of a team working to make Willie the best little person he can be. I no longer dread going to work, but embrace every new day, every sign of progression and every kind word of appreciation. More than anything I am grateful for all of my experiences, good and bad, with these amazing kids. Each and every one of my patients will always be in my heart. (And hopefully I'll be in theirs)

Posted by Katee, Nurse Extraordinaire!
Thank you, Katee, for baring your heart to us.

Monday, May 2, 2011

Happy ALL The Time...

...just ask him!

Keeping The Pearlies White!


He's cruising! I saw it with my own eyes tonight! Every one else has seen him do it...and now I have too! Yeah, Willie!