Tune in Tomorrow

Heads up! Tomorrow on WTOC's Mid Morning Live show (channel 6 at 10am) Your favorite Cutie Patootie Chloe will be telling the world or at least the surrounding area that watches the show, all about Chloe-Palooza. So if you are sitting at your computer and you think to yourself "Hey I want to watch TV tomorrow but I don't know what to watch" well now you do! And please pray for me. I really want to look like I have more intellect then the common chewing gum caught on the bottom of your shoe, and since Chloe has decided that I'm her voice, well you'll just have to tune in to see if I can make it through the interview alive.

Update: Karaoke for Chloe

As a bit of an update: Karaoke for Chloe was a huge success!  There was a american idol styled karaoke competition that was scheduled to begin at 9:00 but actually got started between 9:30 and 10:00...typical Savannah fashion.  No surprises there :)  There was also a silent auction upstairs with some wonderful jewelry donated by Fabrik and a gift certificate from Ruth Chris Steak House and we even had some art students from SCAD donated some fantastic pieces of work! We also held a 50/50 raffle.

Some of the participants in the contest were incredibly talented!  Others were gracious enough to pay a registration fee for Chloe to make a fool of themselves.  We are very thankful for both.  The judges were very funny and a good time was had by all.  There were some very anxious bidders on the artwork upstairs and the raffle pot got up to $660.  When they announced the winner of the raffle he donated his 50% share of the winnings right back to Chloe.

I would like to thank the incredibly generous group of folks who donated their time, money, and effort into making this event a success.  God has used you mightily to bless Chloe and our family.  We cannot thank you all enough.  Now we look forward to two more events so even if you missed Karaoke for Chloe there is still more opportunities to get involved.  The next event will be the Chloe-Palooza kickoff party at Blueberry Hill (a restaurant and lounge in Garden City) on Friday from 4:00pm to close which will be followed by the climax of everyone's hard promotional work on Saturday:

Chloe-Palooza !!!!

Giving Hope to Chloe

Giving Hope to Chloe

Here is the story that WSAV aired about our family today.



A big, big thank you to everyone who helped make this happen.

What ifs and Fairy Godmothers

Chloe-Palooza. It started as a vague apparition of an idea 6 months ago, now in 17 days it will become a reality. Somewhere in that time (and I don't know when) it changed from a noun, to a verb. It drives my every waking moment. In 18 days it will be all over. The fate of our future hangs in the balance. What if I say or do the wrong thing between now and then and ruin it? What if I have delusional thoughts of grandeur and the only people who show up are the people who have worked so hard at making this event a sucsess and guy at CVS I guilted into coming? What if it rains? What if we do make the goal, the house becomes a reality and I am forced to deal with the realization that I know but won't admit to, that no matter what we do, we can't cure her. What if, we don't make our goal, we can't build our house, we continue to live in this house, the kids get sicker, she gets worse and in a few years we have to put her in a nursing home because we can't take care of her here. What if my what ifs continue to fuel this perpetual stress headache I've had for three days now and my head actually explodes. I know, I know, I need to stop with the what ifs. But if you try and tell me that you don't do the what ifs I'll call you a liar. Plain and simple. I struggle every day with giving my what ifs over to God. I know that's what I should do but somewhere between my brain KNOWING I need to give it to God and the part of the fibers in my body that cling to the what ifs like its life blood there is this war. I know it's a war because it's set up triage in that space in my jaws that clinch and fuel the headaches. It's dumb. I know He's got this. I do. I know this with certainty because He sent me Laura. See, Cinderella had a fat, grey haired fairy godmother in a blue mu-mu. I have a size 5, blonde fairy godmother in the hottest leopard print stilettos I have ever seen. And she doesn't have a magic wand, she has a smartphone that she wields like a light saber. I'm sure she has what ifs, like what if Jessica has a meltdown and makes hours more work for me, what if Jessica forgets her NAME on camera again or what if it rains?? If she does have what if moments I don't know about them. But I do know 4 things: God does have this. God sent Laura into our lives. Our lives will never be the same because of her, and Lastly, we can never repay her. God gets all the glory! Laura gets all the thanks and the What Ifs get all the Tylonal.

Easter hit me between the Eyes

Yesterday was Easter. Easter is by far for me the most important holiday of the year. It is the day we celebrate Jesus conquering death and rising from the dead to fulfill Scrpitures and thus giving me hope. Paul says in 1Corin. And if Christ has not been raised, your faith is futile and you are still in your sins......If in Christ we have hope, in this life only we are of all people most to be pitied." then further down in the same chapter he says "For this perishable body must put on imperishable, and this mortal body must put on immortality."
This year Easter hit me square between the eyes. Every year for 30 years I have been sobered and humbled by the amazing work that was completed not only on Calvery but three days later. I am awe struck that MY God isn't a statue made of wood or stone but a God who took on my sin, stood in MY place and conquered death so that I may spend eternity with Him. It is the most amazing feeling. But this year, this year was different. There was still the awe inspiring feeling of the Grace bestowed on me but this year, yesterday, I was hit with the impact of what the Ressurection means to Chloe. Not only will she meet her Saviour face to face but the first words she will ever speak will be to Jesus. The first unaided confident steps she will take will be on streets of gold. Her life here sucks, it is pure torture to see and hear but not be able to communicate. To feel the sand between her toes but never be able to run down the beach. My heart aches for her. But then I step back and He reminds me that " All flesh is like grass and all it's glory like the flower of the grass. The grass withers and the flower fails, but the Word of the Lord remains forever." 1Peter 1:24-25
We are only here for such a short time. It seems so long but really it's fleeting. Unfortunately it's shorter than most for Chloe. But because my Savior lives, my daughter will walk, she will talk, she will breath without problems and her mind will calm down and not seize. And for that reason, Easter isn't about bunnies and colored eggs (which we do because it's super fun), it's the clinch pin, the corner stone of my faith. It's the reason I have hope and can make it through the day without crying. And if Jesus isnt the Son of God and He wasn't raised from the dead, then I more than anyone should be pitied. Because that means Chloe really will never ever ever talk, never ever ever walk. She will always be trapped in an unwilling body. Praise God, He rose. Because He walked out of the tomb my daughter will walk with Him. Because He cried "Abba, Father, all things are possible for you." Chloe will be able to cry "Abba, Father, all things are now possible with you!"
Happy Easter Y'all!

Marvelous Monday

Just wanted to take a minute to say "hi" and "happy Monday"!

Make it the most marvelous Monday it can be.

Chloe is.

Wheelchair Club

Very soon we are getting Chloe fitted for a wheelchair stroller. It's like a wheelchair in its support but it's light weight and collapsible like a stroller. The best of both worlds. Because of this I have been acutely aware of kid size wheelchairs. Today in TJ Maxx I met a mom of a little boy that was in a loner. Kinda like when your car is in the shop they give you a loner. Well with wheelchairs they take a while to come because of the red tape with insurance and they custom make each one to your certain needs and measurements, so it takes a while. Well come to find out this mom uses the same PT as Chloe and his kinesio tape on his legs and even AFOs!!! It was so neat to run into a random stranger that "speaks the same launguage"!!! She was the nicest person and totally didn't care that I peppered her with a million questions about Her sons wheelchair. So lesson for the day: wheelchairs are really cool. No lie.

Busy but not a good busy

Yesterday was an eventful day in the Auner household.  After grocery shopping, mommy was exhausted (being super woman will do that to you) so she went to lay down and take a nap.  The children and I went outside to enjoy the sunshine and warmth of what turned out to be a beautiful day.  The boys grabbed their bikes while Chloe and I made way to her swing.  Chloe seemed very sleepy and I figured once swing time was over she would lay right down for a nap just like mommy.  I couldn’t have been more right and wrong.

After about 30 minutes of smiling, swinging, and trying hard to keep her eyes open, I decided enough was enough and I laid Chloe down for an afternoon nap.  Her quiet rest lasted all of 5 minutes and she began crying out for someone to come get her so, of course, that is what I did.  I couldn't understand.  She was still obviously exhausted but didn’t want to (or maybe I should say couldn't) lay down to sleep.  Every now and then I saw her grunting like she was trying to push, you know….but couldn’t get any relief.  Constipation is a struggle we are still trying to get controlled.  Not enough help and she gets backed up, too much help and she fills diapers constantly and gets dehydrated.  Somewhere there is a delicate balance we are still trying to find.

So Chloe would try to get some movement going with no result (mainly because she was so tired) until she fell asleep in my arms as I rocked her and rubbed her back.  Once asleep, I would lay her down and 5 minutes later, like clockwork, we were back to pushing, rocking, and back rubbing.  This went on for about an hour or so until mommy woke up from her nap and took over the cuddling for me while I searched the local pharmacies for a child size enema.  The things you never thought you would ever have to ask for.  Apparently, enemas small enough to use for a 2 year old aren’t in high demand because most stores don’t carry them.  Thankfully, I was able to find one and it did the trick.  Chloe’s discomfort ceased and she was able to rest easy.

As if our battle with Chloe’s constipation wasn’t bad enough, Isaac (her oldest brother) was bitten by some sort of pestilent insect and he scratched it until he opened a small wound on his ankle.  Within a few hours his skinny little ankle was replaced with that of a chubby newborn.  You know, with those cute little wrinkles that form between the flaps of baby fat.  Only this wasn’t baby fat, it was swelling, and it wasn’t cute, it was kinda scary.  By 9:30pm a trip to the ER was in order.  We didn’t feel like it could wait till the morning.  The infection was getting worse way too fast.  So mom and Isaac didn’t get to bed until 2:30am and there are more meds to be taken and more days away from school in order to abide by doctors orders.  Sheesh.

So yeah, welcome to our world.

Easter Eggstravaganza

Chloe had a great time today at the Easter Eggstravaganza in Garden City.  She got a special visit from the Easter bunny and her brothers went hunting eggs and brought some back for her.  We got to see lots of family and friends while at the park.  Mommy and Kysia set up a booth to raise awareness for Rett Syndrome and promote Chloe-Palooza.  Many people came by and showed us love.

It was good times!

Of course all that was well and good until nap time neared, then Chloe was no longer interested in all the excitement.  It was time to find a quiet place to rest.  There is only so much attention she can take in one day.

-----All this being cute can really wear a girl out, you know?-----

Time to locate Duckie (Chloe's most prized possession and friend) and head toward her comfy bed for a little R & R.

Come play with me at the zoo

Chloe has a new favorite toy.  It's one of those noise makers that you buy for everyone else's kid but hate to have in your own house because it makes the same sounds and plays the same songs over and over and over and over.   It has lots of primary colored buttons with animals all over them.  Supposedly, it's like taking a trip to the zoo for a two year old.  Push on the red button with the penguins face and hear "I'm a tiny little penguin, waddling here, waddling there."  You know the kind of toy I'm talking about.

Chloe absolutely friggin loves this thing.  We hear it so much that I find myself whistling its tunes during my day at work. --- Don't judge me, you've done it too, admit it.---  What I realized recently is that with all the different functions of this toy, there are two messages that we hear nearly 10 times as often as the others.  "I'm a very friendly parrot.  Shouting out loud for all to hear."  and... "I'm a big and tall giraffe.  Standing so high I'm touching the sky!"

Now this kind of thing might just be coincidental if our two year old daughter was running around the house getting into everything and learning the word "no" like every other two year old in between the times she is asking mom and dad about the world around her.  But she's not.  Two things she can do and she is proud of:  stand (as long as she is holding on to a table or something) and shout.  There isn't a whole lot of other skills she has but she has these down pat and she is proud of herself and we are proud of her.

Maybe it IS just another annoying toy...but maybe it's more.  Maybe our little girl is living vicariously through her interactive zoo noisemaker the way grown ups live vicariously through books, movies and television.   "I'm a big and tall giraffe.  Standing so high I'm touching the sky!"  Maybe this is the only thing she has figured out how to use to give her a voice. We are making tiny baby steps toward her being able to use some type of communication device but the progress is very slow.

We eagerly look forward to the day when she can have some form of communication with us.  Until that day I think I'll enjoy every time I hear "I'm a very friendly parrot.  Shouting out loud for all to hear."

The REALLY LONG letter

For those who don't know our story, and those who have heard about Chloe-Palooza but wanted to read more about the WHY of Chloe-Paoolza, my friend and fairy GodMother Laura has asked me to post this really long letter out to share our story. So, sit back, grab some popcorn, and tissues and have at it.


To whom to may concern,
    My name is Jessica Auner, my situation is a bit long and complicated.  I'll start from the beginning. Five years ago my husband and I became the first in our immediate families to own our own home. It is a small 3 bedroom 1bath block home on a corner lot in a quiet neighborhood in Garden City. Shortly after we bought our home we discovered that the crawl space below the floor was filled with standing water and 4feet of mud. We drained the water fixed the  problem and waited for the mud to dry. Little did we know that the foundation was weakened and that now we were growing mold under the house. Little by little over the last 5 years the joists in the floor have given way until now the entertainment center is suspended from the ceiling to make sure it doesn't topple over and several rooms bounce like on a trampoline. The unevenness of the floors has caused the walls to crack and that helped us discover that there was lead paint on the walls. We saved where we could and just when we had a bit of money together to fix the floors we found out I was pregnant with number 3, our first girl. Complications started about 6 months into the pregnancy and she was born a month premature weighing only 4 lbs. By 11months old we were beside ourselves with worry because she has missed all her milestones. She could not sit up or hold a bottle, crawl or do anything her two older brothers did at that age. So the testing started. We meet our $3,500 per person deductible in one month. January came and by February we had met it again. Finally on August 30th we received a diagnosis over the phone from the geneticist in Augusta. Rett Syndrome. Chloe would never walk or talk, she would have breathing problems, seizures, ataxia, we would watch her lose all purposeful hand use and eventually she would die. We were devastated. But you can't stop so you keep going on. We applied for and won Social Security Disability and Medicaid. We were told this would help pay the deductibles and the copays. We didn't realize that in order to keep it my husband could only make $4,000 a month before taxes. He took a $500 pay cut and stopped getting over time. 
     Seeing us struggle my aunt made us a very generous offer. She would give us an empty lot around the corner from us and she would be the banker for us for $50,000 to build a house that was safe and healthy and most importantly would adapt to Chloe's new lifestyle. We have an architect that is willing to draw up the blue prints and a printing press willing to print them. My husband is a licensed plumber and we have several friends in trades. We have also found a crew willing to frame the house for rock bottom price. The only problem is my aunt has told me we need $30,000 before we can begin building.
        After much prayer and thought we decided to have a fund raiser. Thus Chloe-Palooza was born. It will be on May 5th from 11am to 5pm. There will be live bands, a car show, a silent auction, vendors, a raffle, bouncy houses, a rummage sale and possibly an art show (though, I have yet confirmed that).
         I'm a mom, I just want a house my daughter can use her gait trainer in while she can still use it. Using it actually prolongs her life by keeping her mobile but she can not use it in our house. And when she can't,  I want to be able to care for her at home. I want my son's allergies and asthma to go away and give him relief when he's in his own home. I want my husband to see the light at the end of the tunnel isn't a train about to hit us with the weight of the world he carries on his shoulders. And I want to go to bed at night without the thought that I can't do a good job of providing their needs.
         I am in need of so much, advertising, sponsors, volunteers, prayer, wisdom, you name it I probably need it. If you can not help me I completely understand and I am very thankful you took the time to read this novel. However, if you can help me, my number is (912)965-9827 and my Cell is 596-6473. 
Sincerely, 
Jessica Auner  

Chloe-Palooza

I just wanted to update everyone who reads this blog about the upcoming fundraiser for Chloe. On May 5th we will be having Chloe-Palooza!!! You can't just say it you have to boom it. CHLOE-PALOOZA!!! It will be at the Garden City Rec Center in Garden City Ga from 11am to 5pm. We will have bands, a car show, bouncy house, vendors, a silent auction, a raffle, a rummage sale and hopefully a art sale. The reason is to help with our housing situation. We have a lot donated to us and my aunt is willing to be the banker for $50,000 for us to build a house, we only need $30,000 more. A lot I know, but God is opening doors and providing in ways I never would have thought possible so I know the goal is obtainable. Please come down and support us and Chloe in this venture. And if you can't make it there is always the little donate button to the right. Push it... LOL Anyways, we desperately need prayer and an encouraging word or two. Thanks! Updates will be more forthcoming.

Helpless to help the helpless

It's hard not to be envious.

Please excuse the heart on my sleeve but I need an outlet.

When I look around me I see little girls the same age and younger as Chloe who are laughing and talking and playing without a care in the world.  What I wouldn't give to be able to chase our 2 year old all around the house as she explores everything and hears the word "NO" so many times she drowns it out.  Oh, how I long to hear the words "I love you daddy" from her sweet voice, to be bombarded with endless questions about the world, and even the occasional temper tantrum when she doesn't get her way.

These are all just hopes and dreams that depend on a miracle.  Does anyone have one we can use?

Just when I get down and out feeling sorry for myself because of Chloe's disability, I try to imagine what it must be like from her point of view.  She is 2 now so she is getting into the stage of life where she is questioning everything and sizing things up.  By now she has to understand that she is different.  She has to realize that all the other girls her age can express themselves freely through words and movements while she is stuck inside a body that doesn't respond to her will.  I'm sure it makes her sad and frustrated in ways that dwarf my own emotions like a drop in a bucket.

I just want to make her better but I'm completely helpless.

I want to provide for her every need but I'm completely helpless.

I want to be the very best daddy a girl could ask for but I don't even know where to start.

I'm learning what walking by faith is all about.

It's been a while Baby!

I know it's been a while since I have written. I'm really sorry about that. I will log on and update you on our lives later but right now I want to take a moment and tell you about a really cool website. There are not a lot of things Chloe can do. She doesn't play with toys like other little girls her age. Little Tikes, Playskool, Fisher Price are all present in our home, but are used about as much as the Total Gym is used in yours. Plush baby dolls, and plush animals are about the only thing I have seen her get excited over. She has her famous Duckie of course. But she loves to give them kisses. It makes my heart smile and as you know since our diagnosis, heart smiles are few and far between. One day I was looking for a plush baby doll that she could play with that would be unique like her. Then I found it, Baby Be Blessed.
Its a website made by stay at home Christian moms who make dolls with a Bible verse patch sewn on the dolls tummy. You pick the doll, the hair color, the skin color, the dress and the Bible verse. They sew the doll and Viola! You can even add freckles, glasses and even a flower. We ordered one for Chloe, I'll let you know how it looks when we get her. I've dropped some not so subtle hints I want the Valentines Day one. I love the idea of Bobby picking out the details of this sweet doll, and then deciding on a Bible verse with me, his beloved, to put on her. I love the idea of him lovingly picking out her little outfit just for me. I know I'm a dork. But to me that doll, paired with dinner and a movie, throw in a red rose and you have the perfect Valentines Day. It's romantic, thoughtful, timeless and sweet. Ok I digress. Please please please at least check out this site. At the very least I might win a precious little pink lamb.