I slipped soundlessly off the edge of the hospital bed, careful not to wake Annie. It was still early. And we needed her to sleep peacefully through every possible minute of her no food allowed morning. In about an hour, the team would come to take her back for her cardiac cath procedure.
I needed to shower and think before I got up the courage to hand her over. I robotically went through my routine. Mindlessly brushing my teeth in the tiny sterile hospital bathroom mirror, I caught a glimpse of myself.
I gasped and dropped my toothbrush into the sink. I saw someone in the mirror I wasn’t expecting to see. Glasses still perched, wet hair hanging. I saw me.
I wasn’t seeing the reflection of a internet heart mom friend. I wasn’t encouraging someone else who was about to hand her baby over. I was looking right at me.
You think by now I’d understand that all of this isn’t happening to someone else. Some other family. You think by now I’d be way past believing it’ll never be us. Never be our child. You think by now I’d know it’s me. Accept that it’s my life. But it’s not all that easy to swallow right now.
If this is really me–and the reflection in the foggy glass proved it is–then it’s my daughter about to undergo another life-threatening procedure. Then it’s my daughter who has to be held down by me and two nurses just to choke down her regular meds. It’s my daughter who has hospital life PTSD and throws thrashing trauma fits randomly late some nights, unable to be soothed by a caring, but exhausted mother.
Mostly, I don’t want to believe it’s really me because if it’s really me, then it’s really Annie. And it’s hard to admit the test result’s proof that Annie is facing a new complex, incurable diagnosis. Annie has officially been diagnosed with a rare complication of her new heart physiology.
For the last 12 days, living in Children’s Hospital of Philadelphia, Annie has been medically described each morning as: “Annie, our 3-year-old hypoplast, post Fontan, newly complicated by PLE.” Every morning I want to kick and scream and tell them that can’t be my Annie. Every morning the blood test result readings, the new medicine prescriptions, the 6-8 week plans for waiting on her body to respond all explain my Annie.
We’ve agreed to partner with Annie’s care team in Philadelphia to medically manage her new disease for as long as possible. We all know that the medical management of her Protein Losing Enteropathy (PLE) comes with a loudly ticking clock. We don’t know when the clock stops, but her body will decide. It might tick for a number of years, wound by a new recreated fenestration, stents in her pulmonary arteries, high doses of anticoagulation and diuretic pharmaceutical concoctions. It might tick for a few months, stopped short by high pressures, significant protein loss, and lymphatic fluid overload.
All in the same moment, when I can’t even catch my breath because of the sadness for my daughter over the grueling amount of pokes, tests, uncertainties, and awful realities she inevitably faces, I catch my face stuck with a wide, bright grin. I’m Annie’s mom!
-Annie, who upon checking into her 6th floor room for an unexpected hospital stay, carefully carved her own name on a princess sticker paper. Then whispered, “Momma, write brave and strong above my name!”
-Annie who charms the doctors with her old soul and understanding beyond years.
-Annie who has fight and determination.
-Annie whose strong mind convinces her weak body that it’s okay.
-Annie who coaches herself to stay up all night to avoid sunrise pokes by yelling to her eyes, “No, no, no!” every time they threaten to close in the midnight darkness.
-Annie whose will to live has outwitted every prognosis.
-Annie whose quality of life, vibrancy, and giggle offers hope to new moms wheelchairing around the CVICU hours after delivery.
We’ve been teaching Annie, even more in the last two weeks, how God made her exactly the way He knew she needed to be made. A little easy going. A lot feisty. Not very sensitive. A mind over matter kind of girl. We’ve been teaching her to rely on Him when it feels too scary to take another step. “Fear not, for I am with you,” she’ll quote her Bible verse. We’ve been agreeing with her that she is strong and brave…not on her own, but because God can make her that way.
She admitted that sometimes she feels brave and sometimes she doesn’t want to be brave anymore. She took the words right out of my mouth. Every day now I’m scared to be Annie’s mom. I’m scared that I don’t have what it takes. That I don’t know how to comfort her. That I won’t cut up her 8 bedtime meds right. That I won’t make the best decicions regarding her delicate care. Most days lately I just don’t really want to be brave anymore.
Her bedtime book this week is about Franklin going to the hospital. Dr. Bear reminds him that “Brave is doing what you have to do no matter how scared you feel.” So, no matter how scared I feel, I’m clinging to the truth that I’m teaching Annie. We don’t have to fear. We can be strong and courageous because God is with us. And He’s working for our good.
Tonight I’m especially glad to be Annie’s mom, because Annie and her mom are free after another ICU stay. Every time I walk into the hospital with Annie, I’m never certain I’m going to walk out with her. Tonight, I’m thankful to be the mom walking out with my child.
We have so many complicated and confusing and complex days behind us and up ahead. I’m thankful that because of those, both Annie and her mom understand the gift of every ordinary moment.