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 awesome...it'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.

We have had three successful trips down to the beach so far since the first unsuccessful attempt. Lucy loves it and laughs and smiles and kicks her feet! She isn't even scared and some waves have caught us off guard and splashed her in the face a little bit, but she's just so brave about it! We sit right in the sand as you can see in the pictures and it is messy and hurts a hit, but it is the best way for her to be able to experience the way it feels when a wave comes in and washes over her and then what it feels like when the wave goes back out and the sand gets pulled out from underneath her. I am so glad that we came and she got to have this experience!  We have a few more days left to enjoy it before we head back to "real" life...

Forrest and Jenny

So something about being away from home that I had not anticipated is that Rett Syndrome is constantly punching us in the face...we are out of our comfort zone. At home we do the same things, in the same way, with the same people, for the majority of each day.  So here we are in a completely different place, with only strangers, and trying to figure out each day and how it can be successful. It is a little overwhelming...to say the least.


I wrote a whole long post this morning and it began with the preceding paragraph. Unfortunately, after that paragraph I lost my Internet connection and did not realize it so the entire post (minus that paragraph) was lost. I just want to say really quickly what the gist of the post was, however. It was sad and I am kind of glad it got lost because I have a much nicer topic to write about. The post, titled "Forrest and Jenny" as this one is still titled, told about how Chad and I were watching Forrest Gump last night and I lost it when I watched Forrest plowing through the crowd to get to Jenny after his accidental speech at the anti-war rally. And as they waded through the reflecting pool into each other's arm, I just began sobbing because Lucy is so awesome and I want her to be able to have a Forrest in her life. I want her to have someone, outside of her family, that loves her and understands her, and always keeps trying to understand her. That looks past her Rettness and sees Lucy for Lucy.

But I lost that post and it's okay. Then today the sweetest thing happened when we were out for lunch. After we were finished eating, Chad and Lucy went to the toy store and I went to the restroom.  As I was leaving, the young girl that had found a table for us said that she just wanted to tell me what an adorable family we were and how happy we seemed. She said that she sees so many people who seem like they might just be happy because they have lots of money and because they are on vacation, but that she could tell we were just genuinely happy and loved being together! It brought tears to my eyes and I found Chad and Lu in the toy store and told them what the girl had said. I said later how wonderful of an observation that was, given the year we have had and the huge, pretty heartbreaking, and life changing news we received.  That in spite of all of that, we are still happy, and we are people who don't let "life" be the boss of us and keep us down, but make ourselves the boss of life.  We ARE happiest when we are together, but I never knew that outsiders noticed that.

I am still going to add the picture that I was going to add to the original post because it is relevant to both that one and this one.

Lu and her "Forrest"