Happy Earth Day!

"He that plants trees loves others beside himself." -Dr. Thomas Fuller

{Operation Brain Drain was a Success} OUR HYDROCEPHALUS JOURNEY

Well, yesterday was the big day! Operation Brain Drain was a success!! From the moment we arrived at the hospital everything amazingly smooth and the medical team assigned to Joe were amazing! I could see, piece by piece, second by second his fears dissipating before the moment he was wheeled away from me. 

As soon as we arrived to the surgery center he was assigned a number, this would serve as my way to check up on him thought the surgery process. Honestly, between myself and his other family members present I think the board was checked about 50 times...mostly once we learned he was in the recovery room as we were all very anxious and excited to get to see him. 

{'Tis the night before surgery - Part 2} OUR HYDROCEPHALUS JOURNEY

'Tis The Night Before His Surgery 

‘Tis the night before Joe's surgery, and all through the house

Not a creature was stirring, not even a mouse.

His suitcase was packed by the front door with care, 

in hopes that a new him would soon return there.

The littles were nestled all snug in bed,

While visions of surgery outcomes, haunted my head.

He had just gotten home to such a terrible fright,

For it was 11:00 PM, and he could not eat after midnight!

From the kitchen he heard such a clatter, 

I had dropped his plate of food, oh how the tacos did splatter. 

He rushed to help me;  not a moment to spare,

As I was cleaning the mess and crying about how life is not fair.

There he found me in the middle of the room,

still crying over a mess and wondering what he would consume.

Then, it hit me; Spaghetti I did make make.

Leftovers were fast and it’s tasty, and included a slice of cake!

With in a few moments he gobbled it up so quick,

I thought to myself, "Oh, please don't let him get sick."

Then he looked at the blender on the counter; wondering why it was there,

“I made a milkshake and I'm not gonna share!"

Reluctantly, I gave in; pouring my shake into his glass and filling it to the top.

He sat there and drank until we laughed about how much longer until he would pop.

One by one, the hours crept by, as I laid awake counting sheep.

His surgery has me a wreck and I couldn’t go back to sleep!

‘Tis the night before surgery, and here in my house;

they are all sleeping soundly, including my spouse.

{'Tis the night before surgery - Part 1} OUR HYDROCEPHALUS JOURNEY

Uninspired. I don't think there is any better word to describe how I felt today. After picking up Scar from my Uncle's house this morning I just did not feel like doing anything. Nada! Most of my afternoon was spent with me curled up on the couch, desperately trying to catch up on the sleep I have lost these past few weeks. On a bright note I did get to nap for close to an hour so I feel wide awake and refreshed right now! HA!

It was not until around 7 this evening that I finally got my lazy butt off the couch and started getting my ever growing task list completed. I washed all of the bedding so that after using this special preoperative skin preparation soap tonight Joe is sleeping on fresh, clean bedding. Then I decided I should go ahead and rewash the clothes that he will be wearing to bed and those that he plans on wearing to the hospital...better safe than sorry. After getting those loads down, it hit me - I need to bleach the towels he will use tonight and tomorrow so back to the laundry room I went. (At this point I started thinking maybe I needed to make a list.) BAD IDEA! That list kept growing and growing:

Ever had one of those days?

"Cause the players gonna play, play, play, play, play

And the haters gonna hate, hate, hate, hate, hate

Baby, I'm just gonna shake, shake, shake, shake, shake I shake it off, I shake it off" 

- Taylor Swift "Shake it Off"

Oh how I love thee, FB Memories

Woke up this morning and FB reminded me that 4 years ago, this moment happened! I must say, as much as I dislike FB sometimes I am loving the daily reminders of how blessed we truly are! 

{Denial ain't just a river in Egypt} OUR HYDROCEPHALUS JOURNEY

Do you know what most of the words above mean or what the acronyms stand for? If not consider yourself lucky. These are all terms that, over the past few weeks, I have become very familiar with. Trust me when I say it is a HATE/HATE situation...there is no love here.  This entire journey has been a nightmare since day one, and not for the reasons you may be thinking.  

If you were sitting here with me the best way I could explain my past few weeks would be to tell you to close your eyes, take a few long and deep breaths, picture a mountain but instead of rugged terrain it is  a freaking mound of paperwork. As I say that last statement, WHACK I would smack your forehead. Come on, you remember that game growing up, right? Right?  I can't be the only one who ever got sucked into it, though I believe we were told we were running through the woods. 

Anyway, THAT is exactly what I am faced with. Paperwork, mounds and mounds of it. Really, it would not be so overwhelming if most of the papers were not denials of some sort. Way to make a girl freak out, people. The denials start with the original request for FMLA. DENIED! This denial lead to Joe getting "pointed" at work and at the moment he is negative enough that his employer can terminate his job at anytime. (Insert every expletive word you can think of here...and maybe even some you just combined or made up.) Silly me, I forgot to mention that the request was denied even though the doctor restricted Joe from work for 5 days pending his evaluation by the neurosurgeon.  That there is BS at it's finest folks! 

{Friends don't let friends light it up blue} Why we boycott Autism Speaks

A few months ago I sat in my daughters psychiatrists office listening intensely as he explained her diagnoses to me. One by one he went down the list; some I was familiar with other left me clueless. Oh goody more googling when I get home. I was saying the words over in my head so that I would properly remember them upon leaving. It was then that he mentioned ASD. Now this was a term I was very familiar with, I first heard it when my daughter was about 5 years old. 

ASD = Autism Spectrum Disorder

Before, for her, it was a theory...never confirmed. But on that chilly Fall day; my "fears" were brought to life. Why fears? Simply put, I had been following Autism Speaks since her PCP originally mentioned his belief that she may be autistic. Why would following Autism Speaks bring out fears? Glad you asked!

These are words that Autism Speaks uses to talk about Autistic people and their our families:

Barely Living.   Battle.   Burden.   Crisis.   Crusade.   Despair.   Fear.   Missing.    

My daughter's life, our life is beautiful and chaotic, joyful and mundane. Yet, Autism Speaks is telling me, telling us, telling the world to HATE...to HATE my daughter, to hate my family, to hate our families. 

{This is the tooth, the whole tooth and nothing but the tooth...wait that's a lie the gums are involved too} OUR HYDROCEPHALUS JOURNEY

In preparation for his upcoming surgery we decided that Joe needed to be seen by a dentist. I know someone who was scheduled for back surgery and minutes before it was suppose to begin he told the surgeon that he had a tooth ache and the surgeon called off the surgery until he was seen and cleared by a dentist. It was a good thing because that "little" tooth ache ended up being an infection that had caused bone loss. The surgeon later stated that an infection in the mouth could have greatly compromised the outcome of the surgery...it could have even killed him they had proceeded and the infection spread to the area they were performing on. Scary right?!?! Knowing this, we figured better safe than sorry!

{A few of her favorite things}

It is no secret that children learn through play. One of my favorite sounds is when I hear my kiddos playing be it alone, with someone else, inside or out. I love the laughter, the various character voices they demonstrate, the conversations the toys have, the car sounds, everything! Nothing brings a smile to my face faster than hearing my children playing! 

I read somewhere that, "When a child asks you to play it is like you telling your spouse you've had a hard day and need to talk." While this may not always be the case I have tried to always keep that sentence in mind, when my kids specifically ask me to play - I engage! Whatever I was doing becomes less important, though sometimes they do have to wait a few minutes for me to wrap things up. Keeping in mind that play should never ever be a duty; it should always be for fun. My children ask me once every two weeks at most to play; they understand I am busy but they also know that I will make sure to make time for them in my busy schedule. Plus, I home school the two youngest so the get LOTS of "Mommy" time during the normal school week. The older kiddos, they would honestly prefer not to play...unless it is family game night. 

{29 days until Operation Brain Drain} Our Hydrocephalus Journey

Joe and I have had numerous people contact us wanting to see his brain scans to "see" the problem he is having. Herein lies the problem; unless one knows exactly what they are looking at/for it is hard to notice any abnormalities. Thus, this post was born. :)

{Endoscopic Third Ventriculostomy} Our Hydrocephalus Journey

This post will be rather short and to the point as it has been a long day. Today we met with Dr. Thomas Forget with Mercy Medical here in St. Louis. After discussing Joe's condition with him we both feel a lot more at ease. Dr. Forget even took the time to review the CT scans with us, explaining each one to us. He believes Joe was born with aqueductal stenosis and that he brain has finally just had enough. Makes total sense! 

{Head Case} Our Hydrocephalus Journey

March 4, 2016 Joe  and I sat patiently in ER room number 9. Both of us were laughing and making jokes about what "could" be wrong with him. Little did we know, in a few short hours it would be no laughing matter. But our Journey doesn't start here.

Project 366 Share {Day 13}

The mother/daughter relationship is so much more comprehensive than a best friendship. It's a relationship that is not replaceable by any other. No matter how old she is, my baby she will always be. Tonight we had a blast dancing around, like we often do, to no music. These are some of the moments I cherish the most.

Road Trippin'

1/6/16 And we are officially on the road! First stop Branson, MO to see Joe's family!!

1/7/16 The girls were thrilled to learn, upon arrival, that our hotel in Branson, MO had a pool. After a quick trip to Walmart for swimming suits, we were all set for some fun. The next morning, the girls decided to have a pillow fight. While it may look like Scarlett won, in reality it was a draw.

1/8/16 We are officially on the way to Imaging. :) Joe, my partner in crime, made the mistake of telling me if I saw anything on the way to holler and he would pull over. We made it about an hour away before I took him up on the offer. Thankfully, as I was typing reminders for this blog on the laptop I was looking out the window or else I would have missed this little gem.

{Walkin' In Memphis}

1/9/16 Driving from Branson to Birmingham, catching a little ZZZ's and then driving to Atlanta will really wear you out. The last thing I wants was to have my photo taken but when your 8 year asks you oblige.

1/10/16 Scarlett was absolutely fascinated with the fountains and SkyView Atlanta. It was freezing and starting to sprinkle but I am so glad we stayed to watch the water show; if we would have left I would not have gotten this.

1/11/16 One of the perks of homeschooling your kiddos, they get to travel with you without missing school.

All packed and ready to go! {ATL here we come!}

Tomorrow we begin our adventure; eventually making our way to Imaging USA 2016 in Atlanta, Georgia. Can't wait to share the images with you all! 

Project 366 Share {Day 3}

Sisterly love. Ciara (on back) will be 13 in two weeks; Shianne (the carrier) is 15. Nothing warms my heart more than to see my kiddos getting along so well. I have always said they are all more like friends than siblings.

{Full of Beauty}

"Life is full of beauty. Notice it. Notice the bumble bee, the small child, and the smiling faces. Smell the rain, and feel the wind. Live your life to the fullest potential, and fight for your dreams." -Ashley Smith

Today, I had the opportunity to take some photos of my adorable little girl, Caide. She normally does not like getting her photo taken and I never understood until tonight. We were close to ending the session when it hit me, her smile. She does not like her smile. As a Mom, I must say, this broke my heart. When I look at her I see strength, beauty, intelligence and love. When she see her photos she sees a smile that she hates. 

I want to teach my children to grow up to be confident and yet it would appear that I have failed in doing such. 

Summer Session with {Shi}

Shi and I have always been a very close Mother Daughter team. To the outside world our connection seems odd but to us it is just life; the way things were meant to be. My daughter is amazing...why wouldn't I want to hang out with her? One of the newest traditions for us is exploring "new" areas and doing little photo sessions. 

Today we traveled to a local park that I have been wanting to photograph at. Shianne was super excited because I allowed her to wear my Easter dress...to be honest, she wears it better! lol Over all I love the way the images turned out, especially the last one pictured...this was my first attempt at a levitation shot and I think I am obsessed now!

{An outward expression of an inward faith} Our Family Baptism

 Yesterday was a monumental day for us - we, as a family, were baptized! Of course the weather was less than desirable but Jesus suffered a painful crucifixion on the cross so we figured we could endure cold temperatures and even colder water.

The Savior taught, “Pray in your families unto the Father, always in my name, that your wives and your children may be blessed” (3 Nephi 18:21). In our home we believe that f

amilies that pray together build eternal relationships on a foundation of strength, comfort, inspiration, and love.