30 Things You Should Know About Lucille

d47512de-fac5-470b-9882-b9713a1ded10-e1547742635744.jpeg

  1. She is seven.
  2. She loves to dance.
  3. At Christmas, she danced as a Gumdrop in the Nutcracker.
  4. She listens Johnny Cash, especially Ring of Fire and Folsom Prison Blues.
  5. She has a rare disease. A central giant cell granuloma has taken over her mandible.
  6. She has two little brothers, five and one.
  7. Her wavy, dirty-blond hair curls into ringlets when it gets humid.
  8. Now, she has a disfigured face, but her brown eyes still look like mine.
  9. She has my husband’s lips.
  10. Tomorrow, she is having a radical surgery.
  11. Before the tumor, she had my mother’s chin.
  12. Her favorite meal is spanakopita.
  13. She delights in chocolate–in all its forms.
  14. She believes in Heaven but isn’t sure it sounds very fun.
  15. To make this surgery a viable possibility, she spent eight months on a drug called deonsumab.
  16. In second grade, her favorite specials are P.E., science, and art.
  17. She does not like learning Spanish.
  18. She reads two and a half years ahead of her grade, but she likes to read for pleasure, not school.
  19. At the pediatric oncology clinic, the child life specialist gives her Beads of Courage. Her strand is growing long.
  20. A Poopsie Surprise Unicorn and a Chrome Book were her favorite Christmas presents.
  21. Her favorite restaurants are Chick-fil-A and Yafo.
  22. She likes staying in hotels, especially the ones that serve breakfast.
  23. She’s not bad with a hula hoop.
  24. She makes beaded jewelry, and her favorite colors are hot pink, purple, and turquoise.DCEBDF84-DAA6-4EB4-B2D8-B891201F0602
  25. She has become one of the bravest people I know.
  26. Most days, if you saw her when she wasn’t nauseous and didn’t look at her face, you’d think she was a normal kid.
  27. She wishes people would stop pointing.
  28. Her surgeon has been slicing up 3-D printed models of her jaw: He has a Plan A and a Plan B.
  29. We are all hoping for Plan A: complete removal of the tumor and reshaping of her jaw.
  30. When she wakes up tomorrow afternoon, she may have a different face.