Scared of Waiting

For exactly 168 hours, I’ve been waiting.

-Waiting to know if Annie will live

-Waiting to find out if her birth heart is still salvageable

-Waiting to know where we will sleep tomorrow night

-Waiting for the dreaded moment that Annie’s body realizes that her heart is so sick

But mostly I’ve been waiting to live! Clenching my fists, gritting my teeth, holding my breath until the call from Philly comes. Not wanting to miss a single precious normal moment, but not knowing how to live in the now with all the imminent uncertainties of tomorrow clouding Annie’s heart.

10:06am a # from Lancaster, PA rang my phone: the moment of truth.

Our familiar-voiced CHOP Dr greeted me,  “How’s Annie?” No time for small talk, he cut straight to the point. “We reviewed the echo. We agree that her heart function has changed for the worse. We wish her heart was working better…but we believe (for now) it’s still working.” He continued to share that while the echo showed significantly diminished heart function, he and her surgeon don’t feel that one heart echo is enough information to make a conclusive decision about her birth heart–yet.

We will wait 4-6 weeks for her body to adjust to her new heart failure medicines. We will wait to see what a cardiac cath and MRI reveal during the month of March. We will wait for God to continue to work. We will wait for Annie to grow bigger, stronger, and for her momma to grow braver. We will wait more hours in more days to see if her birth heart still has a chance. We will wait to see if she needs someone else’s new heart instead.

But we will not wait to live anymore! No, there’s not time for that. We will not wait to love anymore. There’s no room for that. We will not wait for answers anymore. There’s no need for that.

We will LOVE. We will LIVE. We will FIGHT. We will CELEBRATE today, because today is another day of life we get with Annie.

So today we did celebrate our little fighter. We were honored to have Annie chosen as one of eight women for the Go Red for Women American Heart Association Survivor Gallery Exhibit at the state capitol.

She had a photo shoot, her own poster, her story was shared, and she had quite the audience of Annie lovers.

   
   

  

    
Oh yeah, and of course they wanted that sweet thing on the news tonight! Now that is the way to enjoy our days with Annie.

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