Only God Could Do That…

For exactly 4 weeks she’s nightly been praying, God, can you help Annie’s sick heart? Momma says only You can do that.

Momma, can you walk on the water? she asked.  Before I could respond, No! Only God could do that! she retorted.

Momma, she giggled, can you make a monkey? Before I could respond, No! Only God could do that! she shouted.

Momma, she marveled, can you count the curly hairs on my head? I can’t even untangle them, I thought. No! she quipped. Only God could do that!

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The transplant team says an echo won’t show anything new, he informed. They agreed we should do a blood test instead. Remember, though, we can’t expect any change in her numbers after only 4 short weeks, but we hope that the medicine has stabilized her decline. 12 weeks is the ideal time to retest. Sometimes by then we’ve seen nominal improvement from this medicine combination. Today we’ll simply get this info for our records. I’ll text you later with the results.

A charming Annie blew him a kiss as he closed the door.

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5 hours later the text came through: “Check this!!! Her heart failure number has decreased more than 2,000 points. She’s firmly in normal range now. Praise God from whom all blessings flow!”

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So, Momma, Annie’s heart is getting better? Yes, dear. 

Momma, Only God Can Do That! Yes, dear, only God can do that! 

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Even in light of this good news, our plans haven’t changed. We will continue to move forward with a cardiac cath in Philadelphia in a couple weeks. We still wait to know the decision regarding keeping her birth heart to proceed with a third surgery, or listing Annie for a heart transplant. We’re still very much living in the middle of the story.

But we were reminded today that Annie’s is a story of hope and of a God who knows what He’s doing. I’ll continue to proclaim that this is God’s story, and that makes it good.

  

 

 

 

 

 

The Effort to Forget

For a minute just now I forgot it’s all happening.

I snuggled in bed next to Annie crying out for me. I can hear Matt cleaning and clanking the dinner dishes. Audrey is snoring lightly across the hall, her backpack readied for another week. Laundry piles are neatly creased and work clothes crisply pressed. Days like these make it easy to forget.

Closet piles with a sister make it easy to forget. IMG_5073

Swinging and singing with friends makes it easy to forget.IMG_5093

Storytime antics make it easy to forgetIMG_5155

Hand-me-down toddler tryke riding around the kitchen makes it easy to forget.IMG_5265

Lunch dates with the uncle make it easy to forget.IMG_5337

Post-bath pajama rocking and temporary tattoos make it easy to forget.IMG_5402

The recent weeks seem like a collection of regular nights in someone’s regular life.  But they’re not.

We do everything we can to forget that on the inside Annie’s heart is failing. To forget that these days may be our last. To forget that just ahead we will sign papers, put her to sleep, hand her over, hope we get her back…and pray that she’s still eligible to be handed over yet again in the days that follow.

So the truth is that while we try to fill every day so full that we forget the haunting ahead, each fleeting moment reminds us that everything is about the change and it makes me sick to remember.

I am exhausted from the effort to forget… But there are things that have to be forgotten if you want to go on living. And, today, tomorrow is one of those things.

 

 

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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