Dear Bubba

I used to treasure my life,

Long before there was you.

I was selfish and clueless.

And invincible too.

I carried you in my belly,

While I fed my big behind.

With thoughts of an unhealthy baby,

Not once crossing my mind.

I was oblivious to the real world,

But my dreams were coming true. 

I was having a child of my own,

Anticipating days of "me and you."

You might think that the words "EB"

Hit me like a ton a bricks.

But it took Mommy a long time,

To realize this wasn't something I could fix. 

So here I am two years later,

Staring at your beautiful, raw face. 

Praying to God so desperately,

To let me take your place. 

You see, my Dear Bubba... 

I still treasure my life- but at a different length. 

Because now YOU are the center,

My heart, my soul, my strength.

I would go before you. 

I promise you I would. 

I'd give up everything here, 

If it meant that I could. 

I would take all of your pain. 

And put aside my dismay.

I would give up my life in a second, 

If it meant that you could stay. 

Free of sores, bandages and pain,

Just like a healthy boy.

If you could talk, sing, run or jump,

And live a life you could enjoy.

You might think I'm just saying this,

Because that's what a "mommy" would do.

But I mean every single word-

I'd give my life for you. 

"He won't live to be a year."

Those words cut like knives.

But little did they know...

You were put here to touch lives.

Oh, Bubba, it's so unfair. 

And everyone thinks so, too. 

It's a hard thing to comprehend, 

Why all of this suffering was given to you. 

And as the months have passed, 

I realize more and more. 

Why you were given this cross,

And why you're impossible to ignore.

Only you, Bub, could do it.

Your will to fight is like no other.

No one could possibly take your place,

Not even me, your mother. 

So even if I make bargains with God,

And beg and cry and plead.

I know He'll never let us trade. 

For He knew your role, indeed.

There's no doubt that you're a saint. 

Free of sin, innocent, and pure.

And this, Dear Bubba, I promise you...

For EB- we'll find a cure. 

I don't know how long it will take, 

Or if it will be too late. 

I do know one thing, though. 

You don't deserve to wait. 

So here is my prayer, God. 

I know, right? Not again?

"Give him peace here or peace in Heaven, 

My Dear Bubba."   

Amen. 

-Written by Mommy

9/24/11