Thanks, Facebook.

I remember the first time I finally caved and demanded, “God, aren’t you going to do ANYTHING???”

Facebook was kind enough to remind me that it was on June 7, 2014. This blog entry shared in my newsfeed that desperate day. 20140610-205221-75141340.jpg

I’d like to tell you that two years ago was the last time I feverishly demanded God to perform an act of His powerful, healing hand. But that’s not true.

Since January 2016, I’ve spent too many days questioning His reasoning and His will, wondering if He’s going to do ANYTHING again! It’s felt like dejavu, remember?

Except this time I’m not a naive new heart mom who doesn’t understand BNP levels. Or whose jaw drops when our cardiologist casually throws out “transplant” with his hand resting tightly on my shoulder. Or who doesn’t know that a milrinone dose puts a failing heart at the top of the waiting list.

Especially since our recent cardiology checkup, I’ve been waiting too hard. Begging too loudly. Asking too often: God, ummm hello up there! It’s me and it’s um Annie. You know heart for Annie????? Like could you GET ON THAT?!

Facebook was kind enough to remind me today that two years ago, on this exact day, I was instructed, “Don’t get too caught up wishing for better days ahead. You better enjoy the ones you have because these are likely the only ones you get.”

Don’t hope too hard for tomorrow, dear mother. And although I did…in many ways I didn’t.

Facebook was kind enough to remind me today that since that shocking, devastating, change-your-entire-summer-and-life announcement I’ve actually had 730 tomorrows.

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God was kind enough to remind me today that He actually has been doing something for a little girl named Annie. I hope He keeps reminding me. 

To God be the glory.

Is this the moment?

Have you ever waited on your child to die? Lately, I am.

While Annie sings and plays happily in her nursery class, I sit anxiously in big church wondering if this is the moment.

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While Annie stares blankly out the bedroom window listening for a Monday morning trash truck rumble, I squint to study her face. Is this the moment?

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When Annie coughs down a half-chewed goldfish in the backseat, I shake Matt’s arm to announce,”I think this is the moment.”

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When Annie sleeps through the entire night in her big girl bed, I rush in at midnight to place my fingers on a scarred chest praying to feel its rise and fall. Is this the moment?

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Her care team in Philadelphia discussed Annie’s case in their surgical/transplant conference a few weeks ago. Annie’s cardiologist called to report that the team supports his decision that she cannot have her Fontan surgery. They also agree that she doesn’t need to be on a waiting list for a new heart yet either.

The plan is to wait her out.

Her cardiologist told me that the team made it clear there is no reason to expect Annie’s heart function to ever recover. What’s more likely is that someday (soon?) her sick heart will finally convince her strong body to succumb to sickness, to failure, too.

There is equally no reason to expect that Annie’s heart function won’t recover, he reminded. It’s still a (teeny tiny) possibility that someday (soon?) her strong, fighting, 32-pound body will finally convince her heart to get with it.

We waited her out before, he remembered, and it was worth it. We will wait on her through next spring. We will give her a year, they decided, then retest with a cardiac cath and MRI and make decisions. In the meantime, you’ll know if something changes. You’re her mom, right? he prompted. 

Right.Of course. I’m her mom, and I will know because I will listen intently to every breath, I will measure every med, I will check every fingernail for the faintest trace of purple. I will wonder if every moment is the moment. Uhhh. It’s going to be a long year. 

So far, I’ve been wrong on every one of those moments. Annie remains happy under a facade of healthy, “running around dying” as a curious onlooker recently put it.

Every time I wonder, Is this the moment? the answer is YES. This is the moment that I get with Annie. This is the moment that we have. This is the moment that matters.

So much of this anxiety weighs on me. I’m tempted to zone out in search for a mindless millisecond that doesn’t find me with my hand in front of Annie’s mouth feeling for hot breath. But I don’t want to waste the time I have by searching for solace in a quiet thought.

I recently read an article a friend wrote where he says, “I hope you’ve done something of value today. You’ve wasted a whole day if you didn’t.” (Check it out here.)

I’m praying that even in these anxious days, God will be my peace, grant me rest, and give me the courage to do something of value with Annie every day. Because I’m wasting too many moments if I didn’t.

 

 

 

When the Best Already Came

So how long will this heart last? I don’t think  I even wanted to know. What would I do anyway–make a paper chain to countdown Annie’s fleeting days?

While some days that sounds fitting, I’m choosing instead to count up the days we’ve had. On Sunday, we celebrated 730 days with Annie that we’ve been given so far.

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17,520 hours we were strongly urged to never count on.

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2 whole years with this precious life we chose to keep.

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As we look ahead to the next days of her life, it’s difficult. Matt and I admitted to each other that we just got the best year with Annie that we are supposed to ever have: no surgeries, no hospitalizations, no medicines, no delays, no setbacks.

We’ve had a year where we’ve gotten accustomed to her giggle. We count on her midnight milk calls. We listen quietly as she belts out lullabies in the backseat. We wait for the mealtime impersonations and the wry humor she delivers with a bean up her nose and a sarcastic eye roll. We mourn that she’s traded the endearing mumble of “sis-der” for a demanding “Aud-RAY!”

But that’s not what they’re telling us is up ahead. For the next year we have penciled in

  • regular Philly visits (with a 2yo who doesn’t fly free anymore)
  • frequent cardiology checkups
  • auto refilling those red Target prescription bottles
  • Annie realizing her heart is sick
  • potential heart transplant

Sounds fun, right? Of course not. Sounds hard. Sounds scary. Sounds out of my control.

It also sounds like another year with Annie that I’m beyond grateful to be embarking on. I’m not going to fill it with worries and what ifs. I’m going to fill it with gratitude and rejoicing in each day we have.

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So I might make a paper chain after all. Each night before bed, I’ll record something about that day with Annie that I’m thankful for. I’m praying I get to write so many that the chain can decorate our whole house!

I think I’ll keep track of them online too! You’re welcome to join me by checking out #ThankfulForAnnie.

 

 

Even Though It’s Sad…

  “Annie, are you ready for your heart surgery? It’ll make you all better. Even though it’s sad.”

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We hoped and prayed so much for Annie to be able to have the next surgery that Audrey gave her the pep talk Tuesday morning. 

At 6:15 this morning I pushed a syringe of liquid red “giggle juice” into my 23-month-old’s mouth. She giggled and poked at my face, jabbered and mumbled, and finally started drooling and dancing her tongue- the sure sign it was time. She lay on my lap and they wheeled us back.

  
Warm smiles and handshakes turned to serious medical talk once the door skid closed. A mask of silly smell covered Annie’s face and in 30 seconds she nuzzled snugly into me. I slid out from underneath a limp baby so the team could IV and intubate her. 

I walked slowly back to the smiling entry room, biting back tears. We’ll take good care of her, they promised. I knew from experience they’d keep their word. 

4 hours later we were instructed to meet her cath surgeon in the consult room. Usually he leaves the door open, smiles, chats, and goes on. He marched in, tore free his protective mask, and clicked the door shut behind him. 

Shifting eyes and fidgety feet told all we needed to know. “Her pressures are good. Favorable actually. I blocked one vein…the number that is the definitive measurement of heart function was low. So low I was surprised at how depressed her function actually is. Your cardiologist will stop by later to discuss our decision with you.”

In the meantime, Annie was coming to in her recovery room. When we entered she was croaking out one elicit word: “Tea!”  Baby girl doesn’t know there’s no sweet tea in Philly! She settled for a sippy cup of apple juice instead. 

She was required to lay flat on her back for 6 hours following her procedure. So I curled up beside her to comfort and kiss my sweet southern belle. I woke up to Matt shaking me as Annie’s cardiologist entered with the news. 

  
No one wanted to be the messenger. He asked, what’d her cath dr tell you? He went on to smugly relay that though they knew from her echoes that her heart function wasn’t good, her MRI measurements were surprisingly bad. From an echo they’d quantify her in moderate failure. The MRI data categorized her in certain severe failure. 

He shared that he honestly had hoped and planned that she’d be ready and we’d do surgery number three next week. At this time though he isn’t willing to recommend the Fontan surgery for this kind of heart. 

On the other hand she’s not ready to list for a new heart yet either.  He did prepare us,though, that it’s likely around the corner. 

We wanted different. We wanted easy. We wanted more. 

What we got was sad. Even though it’s sad it’s good to know that there’s a plan that can make Annie better someday. 

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.