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"

So today I figured out how to use Google+ to add pictures to my blog!!! I have been trying to figure out how to add pictures since I started my blog and I am just not so savvy at things like this so it took me awhile. Even Chad wasn't sure how to do it! Yay! So watch out, tons of pictures will be now included!

This is Lucy after she we up from her TWO HOUR NAP today! She rarely naps that long...vacation is rough on her!

Much needed vacation!

Yesterday the Shaffer family arrived at their beach front condo in Duck, North Carolina for their first real vacation as a family. It is just the three of us and we are so incredibly excited to be here and to just relax. Eat good food and relax are the two main items on our agenda. After the year we have had with Lucy's diagnosis and the starting of such an increase in her therapies, not to mention Chad graduating from college and getting offered a permanent position at Minitab, we are pretty whooped...to say the least. So here we are after a nine hour drive!

We attempted to enjoy the beach this morning and it was quite disastrous. Lucy was cranky to begin with and we should have just let her take a nap first, but I thought the excitement of seeing the ocean and the water would distract her...it did not. It just enraged her further. In addition to her crying, the walkway to the beach is in no way handicap accessible so I carried Lucy down in the backpack carrier we have and she didn't like this much either. We are also on the third floor with no elevator. When I booked this cute little condo last summer (at a very reasonable price!) I thought Lucy would be able to walk by now...we didn't even know what Rett Syndrome was at that point.

So, weneed to adapt, change our expectations, and regroup. Maybe we just go for nice walks on the beach, and there is a nice pool right by the condo. We are going to go out for some nice dinners and maybe go to an aquarium. The important thing is that we are all here together sans work, therapy, laundry, and the usualness of every day. We will make  it work!

With her own two hands...

I will not deny that sometimes I use my blog to express feelings to my friends and family...so I can do so in a calm, thoughtful, and constructive way. This is one of those times. Lucy is constantly clapping her hands, flicking her fingers, and some times doing a little wringing. This is Rett Syndrome. A quote from the Rett Syndrome Handbook, provided to us by the International Rett Syndrome Foundation is as follows:

"It is important to recognize that she is not causing the repetitive hand movements to happen. They are happening to her. Even in situations where she wants to, she is usually unable to break up these movements on her own."

Often times, people that do and do not know about Rett Syndrome will make comments such as, "Oh yay she's clapping!" or "Oh, she's playing patty cake! Good job Lucy!" But, as is stated above, and is a fact, she is not doing either of those things, or anything meaningful at all. It is just happening, and I am fairly sure that Lucy knows that very well...better than anyone else in fact.

I would challenge anyone to take a full minute and continuously clap their hands over and over again; that is Lucy's waking hours, every day, almost every minute unless her hands can briefly
distracted by something else, but afterward, it's always right back to that. Regardless of who makes the comment, it feels like somebody has socked me in the gut. The difference comes from people who do not know she is not playing patty cake and the people who do. I have spent a lot of time thinking about why it upsets me so much and how I can express myself without seeming like I am trying to tell people what to do and I have come up with two main points I would like to share so that people who love and care about Lucy might look at her hand movements in a different way, and change the way they acknowledge them.

First of all, as Lucy's family and friends I believe it is our job to let her know that she can be who she is, and how she is 100% of the time for all of her life. I feel that pretending this very obvious aspect of her disability is something more meaningful or more "cheerful" is not fair to her for several reasons. First and foremost because she knows it is not meaningful or cheerful and if we as her loved ones insist on pretending that it is, then she will eventually come to feel like it is wrong or bad, or embarrassing...but she can't stop it, so she would just continue to feel that way. If somebody was having a heart attack in front of us, we wouldn't pretend they were acting out a scene in a play just because that would be easier to handle. It is important to "call a spade a spade" as the saying goes, and move on.

I feel like the motivation for pretending that her uncontrolled hand movements are something else might stem from various reasons:

1. It's sad.
2. It's so obvious and people just don't know what to say.
3. People want to hide from Rett Syndrome, avoid it, pretend it isn't the bastard that it is.
4. Maybe they think it makes Lucy feel better.
5. Maybe they think it makes me and Chad feel better.

But here's the thing, little two year old Lucy never gets to hide from it, never gets to pretend it's something that it's not, and never gets a break from all of the symptoms. And so as adults, and people who love her, I don't feel that it is fair to her that anyone else should get to hide from it either. It is freaking sad, but pretending doesn't make anyone feel better. If she is brave enough to soldier on every day; learning, and working, and struggling, then we all need to be right there with her, accepting Rett Syndrome for what it is and facing that. The reality of this situation is that how we all feel about Rett Syndrome and the sad things that go along with it is not really relevant. It's not about us. It's about Lu and what she needs and what is best for her. For example, the other day, the swallow specialist that we are going to see in New York said to go back to a nipple with her so that she will maintain her "suck/swallow" ability because she has always lost a ton of liquids and is now losing food. This made Chad and I sad, but it does not matter. What matters is that I want Lu to be able to eat and drink for as long as possible! Forever hopefully, and if we have to use a bottle to accomplish that, then we do, and our feelings cannot get in the way of that. We have to just suck it up.

And I will tell you this, I spend every day watching those hands go and go and go, and there is not one second that passes when I watch them that I do not want to scream and cry. I never look at them with anything less than rage, and confusion, and without my heart breaking all over again. But I also look past them, to my beautiful daughter who smiles in spite of them, which is why I am able to shoulder that rage, tuck it away, and get on with business...because that's how she does it.

My request is just that people say nothing at all. They are her hands. They are in constant motion. Yes it is awkward, and obvious, and sometimes tiring just to watch, but we all know that, so let's just step right around them, and let Lucy be Lucy. She never has been able to play patty cake, she probably never will be able to, but who cares! She rocks in other ways, while learning more and more ways to rock each day!

Take that...

In the past few weeks:

1.) Lu has started not only sometimes peeing on the potty after her bath, but now she is pooping too! She has done so four epic times this week with last night's poo being the most epic of all! She was tooting up a storm as I bathed her and I said, "Lu, don't poop in the tubby! Try to hold it. You can do it!" and as I finished up her bath I just kept reminding her to wait until she was on the potty and the moment I sat her down on her little potty she started pooping!

2.) Lucy has started learning to look at us for yes and away for no! We were not having much luck in trying to teach her how to nod for yes and shake her head for no and then when we were at the conference one of the presenters used the looking at you or away method and that is working great! We have been using iPad apps as practice and she loves it! As she continues to become proficient in this imagine all that she will be able to tell us!

3.) Using a Step-by-Step communicator Lucy has helped read The Grouchy Lady Bug and Katy and the Big Snow, two of her favorite books. Lucy has also chosen from activities she has done in the day and used the Step-by-Step to tell her Daddy about her day when he came home from work. (Also a great idea I learned at the conference!)and greeted her friend Celie one morning when we went to the library.

4.) We are fortunate enough to have grandparents with an inground pool and have been swimming almost everyday. Lucy can sometimes float on her backin her life jacket and kick her feet and is doing awesome at practicing standing on the steps in the pool.

5.) And yesterday Lucy got to see a horse for the first time and we met a lady that is going to do therapeutic horseback riding with her.

So I am just really proud of how hard she works and how smart she is and I figured I would just save up and brag about it all at one time. My main message, however, is "Take that Rett Syndrome, you mean, miserable, sneaky, thieving bastard of a foe! Bring it on, we're not afraid of you!"