25 Random Things About My Child with CdLS

Stealing this idea from Facebook, the CdLS-KIDS Blog Challenge this week is to write 25 random things about our child with Cornelia de Lange Syndrome.

1. My child with CdLS is Baylee, and she is 12 years-old.
2. She was diagnosed within a few hours of her birth.
3. Baylee loves to eat…and eat….and eat.
4. She’s a skinny little thing. I don’t know where she packs it.
5. Baylee loves swimming and taking baths.
6. During the summer she lives to go to the neighborhood pool.
7. Baylee usually wets her pants at least once a day.
8. Baylee has killed several iPods.
9. Baylee loves to watch the movie “Lady and the Tramp”.
10. She loves baby dolls and always has one with her at all times except when she’s in school.
11. Her baby doll must go up on the highest shelf in the laundry room every day before she gets on the bus for school.
12. Baylee loves shredded cheese and spreads it everywhere in our house.
13. Baylee loves her grandparents and gets really excited when they visit.
14. Baylee must have her TV on all night.
15. Before she walks out the door to the bus in the morning, she has to run in the kitchen and ritualistically clack her heals together (think “There’s no place like home, there’s no place like home) against the dishwasher before she leaves.
16. Baylee hates to have her hair combed.
17. Baylee flooded our basement once.
18. Baylee has walked on our roof.
19. Baylee has climbed a six foot fence and escaped our yard on her 8th birthday. She was found four blocks away and she crossed a 4 lane road to get there.
20. Baylee thinks she is the funniest person she knows (we think she’s pretty funny, too).
21. Baylee hates shoes.
22. Baylee hates hugs! But she will give you one if she wants something from you and you tell her you’ll do it for her if she gives you a hug.
23. Baylee knows some sign language.
24. Baylee loves tortilla chips and hot salsa…the hotter the better.
25. Baylee is very empathetic and acutely feels other people’s joys and pains.

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4 Comments

Filed under CdLS-KIDS Blog Challenges, Cornelia de Lange Syndrome

4 responses to “25 Random Things About My Child with CdLS

  1. Baylee is definitely full of personality! What a wonderful blessing it is for us to be able to know her through your blog.

  2. Great list! I’m glad to hear she eats so well! Thanks for sharing!

  3. cyrus shares many of those things. i have just starting writing about him on my blog.

  4. Bethany

    My daughter is nine and was just recently diagnosed with mild CdLS. All of her little quirks are so perfectly explained with this diagnosis and it amazes me to read about children like Baylee that have similar interests and behaviors. I am so happy to have found your blog!

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