"We took Zoe home. We took her home knowing full well she would die there. For a year my family loved her. We figured out how to feed her with a bottle by placing a finger under her chin, gently pushing upward until she bit down on the nipple to express milk. It took two hours for her to finish a bottle."
"We held her through countless sleepless nights because her body was unable to metabolize sleep hormones. She would lock up in tonic seizures, big blue eyes jerking to one side. She would go stiff lying beside me, and I would gather her in my arms, my nose in her hair, trying to memorize the soft smell of her. Sometimes I hoped she would go still, that her heart would stop, so that she would be free from suffering."
"We wrapped her in electric blankets in the middle of the Alabama summer because she couldn't regulate her own temperature. We spent every major holiday in the hospital that year. On Thanksgiving, her lips were turning blue and she stopped eating because she had developed a kidney infection. She nearly died from the antibiotics. On Christmas, we watched as she was stuck over and over again for IV placements and her veins blew one by one."
Zoe returned home where her family provided continuous care while accepting that she would likely die there. Her feeding required a finger-under-chin technique to elicit bottle sucking, often taking two hours per bottle. Sleep remained elusive because her body could not metabolize sleep hormones, and she experienced tonic seizures and episodes of stiffness requiring constant holding. Temperature dysregulation, infections, and multiple medications including Zantac, Synthroid, benzodiazepines, melatonin, and Miralax complicated care. The family spent major holidays in the hospital; infections and IV complications threatened her life. The caregiver began nursing studies, balanced classes with appointments, and formed a lasting personal relationship during that year.
Read at BuzzFeed
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