Three years ago we got the diagnosis, Cystic Fibrosis. The pulmonologist assured us that over the course of the next few years we were likely to have more difficulty from Angel’s “other issues” than we were from the CF.

She was right.

For three years we’ve avoided any serious medical ailments from her CF.  One bout of croup is the worst we have suffered.

For three years it’s been a diagnosis. Nothing more.

Now it’s a reality.

On my last day in Buffalo the real world invaded.  The pulmonologist called my cell phone. We had been in the week before for Angel’s yearly testing.  Blood work was drawn, lung functions done, and a sputum culture.

The results of the sputum culture had come back. For the first time ever, Angel tested positive for Pseudomonas.  We were already on Cipro (her lung functions have been on a steady decline & she’s been having some labored breathing)…we had TOBI added on (a $3000 drug, pre-insurance! *faints*), which is an actual inhaled antibiotic.

My baby is sick.

She runs and plays.  She laughs and sings.  But her body is slowing her down.

At night she rasps and wheezes.  She’s now chained to her machines for an hour each morning and evening. Trying to fight this off so that she can run and play without getting so worn down so fast.

We let her run.

We let her play.

She needs it. WE need it.

Our baby is sick.

It’s no longer something that’s in the background.  It’s staring us in the face and gnashing it’s teeth.

I’d come out fighting, but I’m worn down too.  So instead I fight quietly. I pray to find my strength again so that I can be strong for her, for my family.  Life has tossed me about lately, the phone call from the pulm was the last in a string of crapstorms swirling about me.

But then I see her face. Those huge brown eyes that have melted my heart from day 1.

That smile that manipulates my anger into a grin, even when I don’t want it to. The goofy playfulness that can turn the grumpiest grump into a grinning fool.

I know that she’s too little to know what her tiny body is trying to fight off. I know that she’d rather run and play then sit hooked up to machines and fed medicines.  I know that it all makes her sad.

And that’s when I know.  I’d give anything to keep that smile.  That goofy grin.  The annoying repeating chatter that fills my days (and sometimes my nights).  The songs she makes up.  The piercing shriek of a scream she emits that makes my ears bleed, but show that her fire is not gone out.

I will find my strength to fight this thing.  The Mama Bear will emerge, and we will fight the now present danger of CF.

Diagnosis has become reality.

Now we brace ourselves for the fight.  We will fight for every tomorrow we can get. Angel may be tiny – but she’s got a strength and joy inside unlike anything you’ve seen.

I believe that if anyone can win the battle against this disease it’s her.

And if my littlest, my tiny Angel-girl is strong enough – I sure as hell can be too.