Update:  Parker started today out bright eyed and bushy tailed.

Not so much the Mama.

I have a call into Parker’s cardiologist.  Hopefully this will prove to be just a fluke.

Hopefully.

I’m sitting in the rocking chair, next to Parker’s crib keeping careful eye on Parker’s oxygen sat monitor.

His heart rate has decided to hang out in the very low 50’s and take several trips  into the low 40’s.

Moments that cause my heart to want to freeze up.

His sat monitor is continuously beeping.  You can silence it for a few moments, but it just goes right back to chirping it’s warning.

You’d think that I’d be used to the sound of the alarm by now.  That I’d be able to tune it out.  But, no.  I don’t just hear it, I feel it.  Anticipate it.   My heart knows knows the alarm is coming before the sound ever reaches my ears.

I thought that putting his vent on him might help bring up his heart rate.  But no such luck.

There is comfort in the knowledge that if Parker were to stop breathing the vent would kick in and take over that job for him.

But that isn’t enough to allow myself to sleep tonight.

A mere machine could never take the place of this Momma’s intuition.

Or the power of her prayers.

So, am I the only Mom that has given birth to a kid who has earbuds growing out of his head?

Or responds to the suggestion of a haircut as if you had just ordered him to military school?

Hey! Military School! Now there’s a thought.

Eh. Who am I kidding. I’d miss this kid way too much.

On most days anyway.

Parker thought he’d get a head start on the day today.

You know. While it was still dark.

While I’ll always be thankful for Healthy and Happy, I can’t help but wonder if maybe it couldn’t have slept in just a little bit today.

Parker, on the other hand, wasn’t quite so thrilled with that idea.

There’s so much that needs doing around our house these days.

We are trying to mark many tasks off our list.

We’re trying to stay true to our goals of creating and re-purposing what we have into what we love.

With very little, if any money.

The albatross sitting in my family room is gonna take quite a bit of creativity as well as some mighty big effort in the sweat equity department.

But we’ve got a plan.

And one REALLY big bottle of Aleve.

Most of you already know that Parker and I are the Managing Editors over here:

But starting in January I’ll also be working behind the scenes over here:

You won’t see anything written by me, instead I’ll be the one trying to organize when all those amazing giveaways go live.

And don’t be surprised to see us show up every so often here too:

And you may even be able to catch a cameo or two from us over at MommyTalk.com soon too.

And I’m keeping my fingers crossed that the amazing, talented, way out of my league (but a girl’s gotta have a dream) women over at www.blissfullydomestic.com might find it in their hearts to hire us on over at their place.

Because by hiring both me and Parker not only do they get a whopping two for the price of one….they get a Diva of all things special needs AND medically fragile.

And if THAT isn’t enough, I’ll even through in the promise to make my totally stolen images and turn them into usable buttons that actually take you to the specified site when clicked.

What more an online magazine could want I simply can’t imagine.

My blogging goals will always remain the same though:

To show others, firsthand , that a child with special needs is first and foremost a child.

Especially a medically fragile child with special needs.

Over 90% of all children prenatally diagnosed with Down syndrome are still being aborted. Mainly out of fear of the unknown.

The what-ifs.

The I could NEVER do thats.

Fear is a funny thing. Introduce it to experience and whoosh! it can disappear into that space hidden between heartbeats.

And truthfully? I spend many nights worrying that when Parker does get healthy enough to run around and do all the things healthy little boys do, that there won’t be anyone who will want to do those things with him.

They’ll be afraid that he’s too different. They’ll be too uncomfortable. They won’t know how to act around him.

I worry that he’ll never experience such simple things as:

birthday invitations.

regular play date inclusions.

valentines and secret crushes

the thrill of being chosen for a team

Not the out of pity kind. But the kind that comes with the same desire and excitement all the other kids receive.

Cause, trust me. We’ll know.

I worry that other parents just won’t have the time to include a kid like mine with a kid like theirs.

So I try to share how much Parker is just like every other four year old.

Except, you know, different at the same time.

But still just as amazing.

And capable.

I find my today’s prayers asking that Parker’s tomorrows will include many in our community willing not only accept, but to welcome, embrace, and include.

I’m hoping to start a conversation sharing ideas of how to prepare our families in case of an emergency.

*Power outages.

*Economic Crisis

*Loss of Mail Delivery: Many of Parker’s medical supplies, including his formula and one life saving medication are delivered via FedEx and UPS>

*Earthquakes

*Hurricanes

*Civil Unrest

You know.  What seems to be the usual state of the world these days.

And I sure could use your help.

Here’s a direct link:  HOW PREPARED ARE YOU?

Maybe we can make 2009 the year we all get prepared for whatever may come our way.

Come on over and share your ideas and ask any questions you may have.