...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, December 1, 2010

Am I 'That Mom?'

Well, yes, I guess I am. I had an out of body experience today. The proverbial floating above, looking at myself, feeling void, feeling intimate and familiar with that woman but also strangely detached at the same time. And then my spirit was pile driven back into my body with a force only equalled by the pain of being. At least, that's how it seemed. I'm sure it wasn't that dramatic, and it took me longer to type that than to have the experience.

I really am fine with Jack having Down syndrome. Really, I am. He wouldn't be Jack without the extra bits. Once again, it's me having the problem, not Jack. All that bravado a few days ago...yeah, all pure crap. At least that's how it was this morning.

It's easy to feel like I'm coping when we're totally sheltered by all of Jack's therapies coming to us. It's a different story to join a group. I've read plenty about Mom's who have been gobsmacked by their feelings while attending their Buddy Walks, and I've read about quite a few Moms who were already feeling stunned just at the prospect of going to the Buddy Walk. So I thought I was prepared for ours, and when it came I was fine. I even spoke to lots of young children and their parents. I was fine. Maybe it was because The Dear Daddy took complete possession of Jack to go watch the band while I chased after our seemingly typical Olders to do all of the activities that Jack is too young for. Maybe I was just busy and distracted. Maybe I really was just okay with all of it.

So this morning I was pretty excited as The Jack Snack and I headed out the door to a Mommy and Baby class that Beth, our OT, thought might be beneficial for both of us. The class has three little girls, the youngest is Miss S and she is 11 months old. The oldest is Miss N and she is almost two, and the middle of the girls is a little dolly we've already met several times, Miss Em and she is 19 months old. Two of the girls have Down syndrome, and the oldest, sweet Miss N, has some other chromosomal issue I don't know the name of. It turns out that Miss S's mom had to call out that day, so it was to be Jack and the two girls.

Miss N wasn't having a good day and cried quite a bit, but she'd started off willing enough to play and do some of the activities in this giant room full of fun stuff to do. Jack kinda took it all in, not at all bothered by the noise, having a shared a home so far with The Middle. When Miss Em arrived we were happy to see a familiar face. We were all in a circle playing and learning how to share. Miss Em and Jack have met before, but the first time Jack was sleepy and had little to say. The second time we were at the mall having yogurt and Jack pretty much babbled to himself and aside from staring raptly at Miss Em, had little to say directly to her. Today was a different story. Today he could not take his eyes away from her. He sat and stared at her. He laid on his belly and stared at her. He babbled to her. Miss Em's Mom gave her the sign for boy. A few minutes later she gave her the sign for friend. They sat together. They stood together. Or I should say, Miss Em stood while Jack was held in a stand. And Miss Em leaned over and gave Jack the sweetest hug ever! While we were working on our sharing skills with Miss Em, Miss N was working on voicing her discontent, and Mr Jack was working on rapt devotion to Miss Em, it suddenly happened. That whole out of body thing.

It was brief, but dang it kicked my butt! Suddenly there I was. I was that Mom. You know, the one with the kid with Down syndrome. I was part of that group. And it pretty much sucked for a minute. There were no facial grimacing or tears, just a brief moment where I was sucked backward for a second out of the time continuum and then shoved abruptly back forward into the here and now. Jack has always been that kid. Jack has always been part of that group. You know, the kid with Down syndrome. Poor Jack. Yeah, not so much. Jack doesn't give a rip that he has Ds, and truth be told, neither do I. Because Jack is Jack and he rocks those genes. So it's time for me to also be part of that group. You know, the Mommies. Because until now, I've really just been The Mommy. Now I can be part of the group. Mommies. Plural. Not single. Not isolated. Not alone. And crap, here come the damn tears again.

So this whole OOB thing wasn't some final admission that my darling baby boy has Ds. It wasn't some final acceptance of the Ds. I've been there, done that already, and I'm finished with it. I guess it was an eye opener for how this Ds thing may help define me. It just added another dimension to who I am. The Beloved and I have already been that couple faced with an unexpected later in life pregnancy. We've already been that couple struggling to cope with what we truly believed was devastating news when Jacks dx came in. I've already been that woman out shopping looking longingly at other women's bellies where typical babies grew. I've been that woman who had to endure the pity looks from doctors, nurses, lab techs. I've been that woman who told friends, neighbors and family the news. I've been that woman who was scared skinny. But no more. Now I am part of The Group. One of The Mommies. And I belong. I belong!

So it turns out not to be a pity party post after all. Turns out it was pretty danged cathartic to write it all out! I talk to myself quite often. It's usually a one way conversation, with a stubborn pig head. Sometimes I talk in circles. Sometimes I get mad at myself. Sometimes I yell at myself. Sometimes I wind up more confused than I started. Sometimes I get answers. Sometimes...I am brilliant.

Miss N's Mommy decided to take her home mid way through the play group, so it was just Beth, Jack, Em, Em's Mommy and I. The kids sat in the suspension swing (Man I wish I could get in there!) and then we all sat on the bench swing to sing and sign. Jack and I learned a new song called Slippery Fish. Well, I learned it...Jack pretty much just ogled Miss Em and fell more deeply in love. It turned out to be a really good thing to do and I can hardly wait for next week! Yeah, Mommies!

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