The Ugly Truth

Annie paraded around the ICU

-chained to a rolling IV tower,

-face leashed to rubber airflow,

-directed by an overeager five-year-old,

-prodded by an overaggressive nurse,

-filmed by an excited aunt,

-hand in hand with an anxious mommy

-moaning and crying with each tiny wobble.

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What a spectacle. With every groan, new onlookers spotted the procession. I felt equally ridiculous and proud, coaxing her a few more steps to show her the windowed corner unit her frail body rested in when she was a wee four-day-old. “And then look over here, this is where you were at eight weeks old. Oh and over here is where you were at three months old.”

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I wanted to shudder. All those tiny sick babies held by lovesick parents just doesn’t seem right. I felt terrible interrupting their sacred moments with my wailing toddler. I looked apologetically into each staring eye.

Until I remembered.

One night I sat in that windowed corner, lovesick, rocking a tiny sick baby late into the night. It had been four long days since I’d had my hands on her. Holding her felt like I could die from the delight and the fear. I sang her the song I’d sang while she grew in my tummy and the world around me stopped. The next day she’d receive her first scars.

One day I sat in that private room, begging God to heal my newborn’s failing heart. Crying over diminished echochardiograms, enraged by sky high BNPs, and too homesick to breathe.

One morning, I finally laid my eyes on her again. Three hours after I’d given her to them. She looked lifeless, swollen, and I knew she was mine.

Those intense survival moments were each joyfully interrupted by a post-Fontan parading toddler. Moaning, wobbling, face leashed to rubber oxygen, tethered to the IV pole. Excited aunt filming each step. Anxious mom holding on tight.

On those days, my eyes were the staring eyes, the begging eyes, the envious eyes, the hoping eyes. What if maybe someday that could be Annie? What if that jagged cut, the swollen head, the IV drip, the aggressive nurse, the bruised pokes were worth it? What if someday the ugliness of today could get us to the beauty of that grunting progression?

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Moments ago, I gently bathed an ICU wrecked girl. Today, nine days after open heart surgery number three, Annie was discharged. Sticky residue still covers her elbow from the every morning prick. A jagged scab flakes from her incision. I pinned her down to peel off the last super glued dressings. She kicked and spit at me while I tried to speak softly and tell her that what I was doing was from deep brave love.

But now I sit laughing and selecting kitty stickers in a Philadelphia hotel room. A smiling pink lipped girl hides her battle scars with giggles and remember whens.

Remember when we went to Disney? Remember when I was a baby in that tiny room? Remember when I drove my Barbie car? Remember when the doctor said I could go home to the hotel today?

In about an hour I’ll have to restrain her again, convince her to choke down medicine that she’ll spew back in my face, and then hide my tears so that she’ll choose courage and swallowing.

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Remembering the ugly is traumatizing. Living the current ugly is scarring me.  Basking in the absolute beauty of ongoing healing makes it feel the tiniest bit worth it. We’re brushing off the ashes today, wondering what garden could ever grow in this barren place.

But we’re believing in the faithful God who has made beautiful things out of our wretched dust for the past three years. We’re clinging to the life and love and normalcy that has grown from the ugliness of those hope-filled rooms. Because of those frightful days that we’ve gasped through too many times, we can look full shining faces to the future.

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When you Can’t Go Back

8 days ago I nuzzled a 3yo snuggler awake. My touch was soft, gentle. She didn’t want to wake up yet but still she turned to me and smiled. 

This morning I settled a thrashing 3yo awake to shake her from her own nightmare. “No, no, no!” she wailed and rolled and screamed. When she felt my touch, she flenched and fought more. She thinks I’m at her bedside to help a stranger force pricks, pokes, and pain.  

8 days ago, my brave and compassionate 5yo comforted her little sister. “It’ll be ok, Annie. I’ll push you for a ride around the hospital.” Yesterday, Audrey clawed my legs and shrieked in hospital bathrooms, protesting having to leave me for another night. “No one ever let’s me do anything here!!! It’s always about ANNIE!” 

8 days ago, I was dreading but hopeful about Annie’s third open heart surgery. Today,  I’m sitting next to my normal acting girl who’s still in the ICU because of a post op complication. Every morning the anxiety grows again as a team reminds Annie that she can’t eat at 4am, X-rays her at 5am, then starves her until 9 debating their decision. Annie has a pleural effusion, which is a significant amount of fluid filling up the pleural space between her right lung and chest wall. 


I can hardly remember who we were 8 days ago: rested, agreeable, thinking we might have gone home by now. Now in survival mode we’ve forgotten about home. Trading off nights asleep on hospital couches, arguing for midnight meds to be moved, pretending the beeps aren’t sounding, trying to manage my own trauma every time blue scrubs come through the door. ​

Last night we asked each other why we wanted this. Today I’m knowing my name is the one on that consent form. I’m responsible for her nightmares, her real life terrors that are justified. Our decision is the reason for the distress and dysfunction and desperation we can’t escape right now. ​

​We’re thankful Annie’s surgery went well but we are weary in the waiting. We have hard days behind us and hard days in front of us. This strange fight for survival isn’t over yet.