...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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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!


Becca said...

Wow, what an amazing clarity of perspective from being on the other side!! I'm so glad the camaraderie won in the end. Those questions seem, in a way, like being asked for my id when purchasing alcohol - DUH, of course I'm over 21, did you *really* find it necessary to ask? Just doing what's required of the job. :-(

Tracy said...


Exactly the point I was trying to make! It just seems so inane that we are subjected to this crap over and over again and it never changes or gets any better!

"I'll take 'Pointing Out The Obvious In The Form Of A Question' for $1,000, Alex."

It just burns my britches that seemingly educated and supposedly "aware" people remain so oblivious. DUH!