Monday, April 23, 2012

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.

Wednesday, April 18, 2012

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.

Monday, April 9, 2012

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.

Wednesday, April 4, 2012

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.

Monday, April 2, 2012

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.