Friday, August 17, 2012

Who is Lucy Shaffer?

Lucy Shaffer is a two year old little girl who:
-loves her mom and dad
-loves her puppy, Elmer
-loves all of her grandparents, great -grandparents, aunts,uncles, and cousins
-really likes to eat...a lot! Especially cheese (in any form!), pizza, pudding, applesauce, hotdogs, turkey burgers, pasta, dippy eggs on English muffins, yogurt, DONUTS!!!, and a ton of other things
-knows the names and face of all of the people in her life and can point to their pictures when asked
-can also identify approximately 100 things including animals, foods, colors, tv shows, people, and places all by pointing to pictures
-Loves to watch her favorite tv shows which include Martha Speaks, Curious George, Super Why, Word Girl, Sesame Street, Wild Kratts, and anything that she watches while either sitting on the couch with her Dad'ums or in the chaise lounge with her Pappy
-Smiles when she is happy, cries and fusses when she is mad or sad, yawns when she is sleepy and acts up a bit when she's being a stinker
-likes to ride horses
-Loves to go swimming
-likes to go for wagon rides and rides down her slide
-does NOT like to get her face wiped off
-does not really like sauerkraut
-loves to rock in the recliner and read stories and cuddle
-loves Violet, her talking puppy toy
-understands all kinds of things like where our socks and shoes go, the difference between yes and no, what is and is not a food, that she shouldn't chew on Elmer's rawhide bones, but does it anyway until I scold her and then she tosses it aside, acting as if she hadn't been doing anything at all!
-hates to get sunscreen on
-gets impatient when I take too long getting her supper/lunch/breakfast ready
-likes snacks
-has a favorite teddy that she must sleep with at every nap and every night
-still likes her binky
-does not especially care for getting her teeth brushed

Lucy Shaffer is a two year old girl who also happens to have Rett Syndrome. She is not Rett Syndrome, she just has it. She is many, many, many other wonderful things, and also, as I have shown, in a lot of ways she is not much different from any other two year old little girl. Just because Lu can't talk doesn't mean we don't know what she likes or doesn't like, or how she's feeling, or what she knows. And just because she doesn't walk, doesn't mean she doesn't go anywhere. And just because Rett Syndrome has stolen all of these major things from her, and then replaced them with rocking, squealing, ceaseless hand movements and other exhausting things that she cannot control, does not mean that Lucy is not in there. She most definitely is and she's's just up to her "big bats" (aka me and Chad) to make sure people are always seeing that she is in there! She hears us, she understands us, and she wants to be a part of things, just like any two year old does. And she knows without a doubt that she is loved unconditionally by her Mom and Dad, but also by many others, and I bet she knows we will make the world know just who Lucy Shaffer is.


  1. Oh Julie, you make me cry. . . . . you have done such a wonderful job with this blog, keeping us informed and educated. Lucy is all those things and more, thanks to two wonderful parents! She WILL always know she has two loving and patient parents. Keep up the good work. Blessing come to us in different ways, and sometimes we have to look at things in a different way to see them!!

  2. The above comment just took the words right from me and typed them in here for me! Perfect! Mirrors my thoughts on this post to a tee, Kiddo! Keep up doing everything you've been doing with and for Lu and she's gonna shine like the brightest star ever!