ONE

It's early, I'm awake, and with the birthday party today, I need to write it out...

I know it's been a long time since I've been here. 

January, in fact. 

Almost an entire year.

Micah,
Yesterday, you turned ONE. 

Can I tell you something?
I never thought it was going to happen.

When you're told so many times that your child is going to die, well, how many times is too many before you just really start to believe it?

Even now, I find myself thinking I'm still on borrowed time with you. 

I hate that about me.  It makes me feel so very full of doubt. 

But then again, aren't we all just a bunch of doubters? 

I want to tell you all about your first year. 
And since I never have any time to write anymore, I woke up early this morning, made a big pot of coffee, and decided it was time.

You've changed my life.
Everything about it. 
You have made me a different person than I was.

When Kathryn died, my body broke.  It really broke.  Not just my heart, but everything about me.  I hurt all the time.  And no one understands what that's like, unless they've lost a child.  They can try so hard to try to understand.  Even saying things like, "I can't even begin to imagine what's that like...."

I want to tell them all, "please DON'T imagine.  Because it doesn't do the pain and the hurt justice."

AT ALL.

My time with her made me appreciate life, but not in that happy, fluffy way people talk about appreciating life when they hear of someone sick.  But it made me appreciate the actual physical things.  The darker things.  Like thinking, thank God my heart still beats, and that my blood pressure is good, and that I don't have to be hooked to a machine to enjoy this sunrise...

I changed.  Forever...

And a year ago, I almost bled out on a table.
And then you were born.
Almost dead yourself.
Spred eagle, frank breech, and not a cry was heard.

I lay there stone faced, maybe even smiling, because I thought to myself, I just have to.  If I have to endure this again, then my body is going to physically shut down. 

I put you in a box.

And spent every day thinking, 'ok, this is the day that I'll probably have to let you go...'

And you didn't go. 

Over time, I softened a bit.
Never enough to spend the night with you.
It was just too hard.

The first time I spent a night with you in the hospital was the night before you were coming home. 
And it was really, really hard.  Trying to reconcile in my head that the baby I thought was going to die was now going to come home.

And now you're here.
You're smiling, and laughing, and dancing, and SCREAMING up a storm.  You're fed by g-tube bolus feeds, but you love it when your nanny gives you water through a syringe to quench your thirst, and yesterday, sweet boy, on your birthday, you even got a sucker to taste. 

You copy your brother.
You love Elmo.
You stare at Mr. Beau.

You give me nuzzles and you wake up at 6:30am.
This of course is after you wake up most mornings at 12am and 5am gagging and oftentimes throwing up.

The truth?
We still don't know what's wrong with you, or what's caused this.

Most docs now believe the chylothorax diagnosis for you and Kathryn is off the table.
You've been tested for storage disorders, and after being presented at a radiology conference, our family is now being submitted for acceptance into an Undiagnosed Diseases Program though Genetics. 

These are things I don't talk about to most people.
But they should know. 
Because they're the things that keep me from sleeping.

Could be nothing.
Could be something.
Could be lots of things.

I hear that a whole lot from a whole lot of folks.
And it makes me weak.

To think that there may STILL be a giant invisible elephant in the room, knowing it's taking up a whole lot of space in my head. 

All the time.

So I could write about you all day, but what I DO know is more certain, and that's how you've changed me.

You've made me realize life is short.
Or long.
Or unknown.

And that unknown of course is the scariest part.

You've given me strength.
I never knew I was capable of this: of raising a child with special needs, and of what that means and how it feels my soul with all kinds of hope and beauty and laughter.

You've taught me that I can do so much more than I thought I could do.

You've given me the gift of finally, after all these years, being able to forgive myself for being me.  Impatient, overly scattered, imperfect in so many ways, and yet, you smile at me, and you bring your head into my shoulder to cuddle, and I forget all those things and only remember one thing: I'm your mom.

This year has been hard. 
It's been really hard. 
I don't really know how we've done it.
But we've done it because for you, I'd do it a million more years.

You, sweet Micah, are a miracle among men.

Not many people get to say that. 

And not many moms get to say they're raising one.

So today, as we gather with family and the closest of friends to celebrate your first birthday, I want to THANK YOU. 

For what you've given me. 

You, sweet boy, have given me back my heart.  And mended it.  In so many ways.  I can't even begin to thank you for what you've done.  I've held back these tears for a long, long time, but this morning, before the sun even comes up, I'm letting them go. 

Thank you for piecing my broken heart back together.
One day at a time, and it's going to be a LONG process.

I'm not the only one you've done this for.  So, so many people have been healed by your fight, and your smile, and your nuzzle.

You need to know this.

And one day, God willing, I'll take you to a river, sit you down, and tell you face to face as we sit on the side of the water, our feet dangling in, how you allowed me to let it all go and swim.

HAPPY BIRTHDAY.