A Trisomy 18 Warrior
This is Chicken Nugget—also known as Evalyn! Keeper of all things chicken and full of spunk, she made her grand entrance on New Year’s Eve, true to her fiery personality.
Evalyn is almost three. She was born without a heartbeat and brought back to life after two minutes of resuscitation. She was bagged for 20 minutes until the local children's hospital arrived to stabilize her and transport her. Nobody knew what was wrong.
Five days later, we got her diagnosis—Edwards Syndrome (Trisomy 18). At just one day old, she underwent surgery to repair esophageal atresia. We spent 31 days in the NICU and went home under comfort care, anticipating we’d lose her—but following her lead, not the prognosis.
On May 3rd, Evalyn had heart surgery to repair her large VSD, small VSD, and an ASD. She was one of only three or four Trisomy 18 children in five years that our local hospital had attempted to operate on. Now, the same hospital has performed 4 to 5 surgeries just this year. Evalyn helped open that door.
She got her g-button on July 28th. She has bronchomalacia and tracheomalacia, which makes colds especially hard. We spent most of her first year in and out of the hospital with illness, but she recently had her longest stretch home.
Evalyn is in OT, PT, and speech—and she’s doing amazing! She has two big sisters who absolutely adore her. We’re giving her every opportunity to thrive and become the best version of herself, without pressure. If she can do something, we cheer her on. If not, we love her just the same.
She loves light-up toys, jingle bell sounds, and is insanely ticklish. Her smile lights up her whole face. She’s a water baby, a car ride enthusiast, and an adrenaline junkie at heart. She listens to Christian rap, settles with classical music, and her favorite lullaby is “Chicken Nugget Dreamland” on YouTube—we’ve officially declared it her song.
Her sisters call her a silky chicken because of her fuzzy hair and the way her sweet arms look like little wings. She loves shadows and bold colors, and will play in the dark all night with a flashlight, making hand and foot shadows. Her joy is truly contagious.
The hospital was covered in Christmas lights while she fought for her life. Now I have a soft spot for Christmas lights—they remind me of hope.
In the NICU, I made peace with the possibility that Evalyn might go before my heart could ever be ready. I leaned into God, praying not for my will to be done, but for His. I’ve tried to honor whatever plan He has for her, and not fight it.
Evalyn has brought prayer back to the wavering, hope to the hopeless, and light to those who thought they lost it. Anyone who meets her falls in love with her joyful spirit and that soul-deep smile. People pray with us and for her. Watching her impact has been beautiful.
I often say, she has Kingdom work to do. And despite her differences, there is never a shortage of joy on her face. She reminds me daily of God’s goodness. No miracle is impossible.
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