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.

Meg Myers {Point Fest STL}

See that guy with me? He is seriously one of the most awesome people I know. I am by no means an easy person to get to know. I hide behind a wall of pain and everyday that passes he manages to chisel away at that wall. Today was now exception. One of my favorite non-Christian rock artists was playing at Point Fest and he bought us tickets...we should have paid more attention to the fact that Meg Myers would be performing on the side stage and not the main as we bought seats for nothing. 

We arrived a little early so we watched a few other bands before she hit the stage. Honestly, I could not with 100% certainty tell you how they were; personally I was not impressed with them. Then the moment came and she appeared!! 

The greatest gift is a passion for reading

Today Scar was giving the honor of meeting with the members of our school board. She was one of a few select kiddos chosen to share things about the Title 1 Reading Program and all the things they have learned.

Poor thing, she was both excited and nervous...I, of course, was nothing but proud. We knew that Scar was having issues with reading and it seemed like nothing was helping. That's when we learned about Title 1 Reading Program, I cried when they told me she was accepted. They were both tears of joy that she would be receiving specialized help but there were also tears of sadness; I felt like I had somehow let my kiddo down. Maybe I did not read enough to her when she was younger. Should I have read more books? Two bedtime stories instead of one? Was I working to much and just not making myself available. Nothing like a little Bad Mama guilt to make you feel better about yourself.

 What is the Title I Program?  It is an in school program designed for students who are reading below grade level may receive additional support through a Title I teacher. This federally funded program has helped thousands of students improve their reading and writing skills through a push-in program or small group instruction. Scarlett has come leaps and bounds since joining the program. It also helped that she receives yearly eye exams as the last one we learned she has a Convergence insufficiency which causes her to experience diplopia at near distance...like when reading.

{Living outside of the Box}

Scarlett got her class shirt yesterday. I love that she drew herself with arms and legs.smile emoticon

Today's post will be shore and sweet but I wanted to share. Scarlett got her class shirt yesterday and I love that she drew herself with arms and legs.  (Notice she is the ONLY kiddo who did so.) Always has to be different; I love that! 

Always has to be different. heart emoticon

{Happy Earth Day!}

“In every walk with nature one receives far more than he seeks.” -- John Muir 

50 Questions That Will Free Your Mind - Marc and Angel Hack Life {Day Zero Project}

From the Marc and Angel Hack Life blog - these questions have no right or wrong answers. Because sometimes asking the right questions is the answer. Because sometimes asking the right questions is the answer.

Some of you may have seen on my previous post that I am participating in the  DayZeroProject. One of the items on my list was to answer the "50 Questions That Will Free Your Mind" from the Marc and Angel Hack Life blog. These questions have no right or wrong answers. Because sometimes asking the right question is the answer. If you disagree with my answers feel free to share you opinions but keep in mind I will not get into a debate; these are simply my answers to the questions. Right or wrong. 

How old would you be if you didn't know how old you are?  If I didn't know how old I was, I would still be the same age that I am regardless of the fact that I am unaware of my age.                                                                                                                
Which is worse, failing or never trying? Hands down in my book it is worse to never try. So many people worry about what will happen if they fail but they never think about what could be if they succeed. "I have not failed. I've just found 10,000 ways that won't work." -Thomas A. Edison                                                                     

If life is so short, why do we do so many things we don’t like and like so many things we don’t do? I think that sometimes we keep doing what we are doing even if we don't like it because we get comfortable in our own routines. (At least I know I do.)                                                                                                                                 
When it’s all said and done, will you have said more than you've done?  I hope not but I am a talker so it is very well possible. Let's just say it will be about 50/50.                                                                                                                                          
What is the one thing you’d most like to change about the world? Ignorance. 
 If happiness was the national currency, what kind of work would make you rich? In this imaginary world in question my work or job would be to be a full time Mommy to my kiddos.                                                                                                 
Are you doing what you believe in, or are you settling for what you are doing? Just recently my eyes were opened and I have started my journey toward doing what I am passionate about and believe in.                                                                     
If the average human life span was 40 years, how would you live your life differently? I would have started living outside of my comfort zone a lot sooner as I now realize that not doing so isn't really living. I have been allowing myself to hold me back.                                                                                                                                                     
To what degree have you actually controlled the course your life has taken? I believe this one is hard to measure as there is destiny, free will and somewhere in between we find personal accountability. No one wakes up and says I want to have an illness, we have no control there but we do have control over our actions, our choices, or beliefs thus I can not honesty answer this questions.                    
 Are you more worried about doing things right, or doing the right things? Definitely, dong the right things...KARMA!  

 You’re having lunch with three people you respect and admire.  They all start criticizing a close friend of yours, not knowing she is your friend.  The criticism is distasteful and unjustified.  What do you do? I would defend the person in question and begin to reevaluate my judgement in character. I do not want to surround myself with negative and judgmental people, much less admire them.                                                                                                                                       
If you could offer a newborn child only one piece of advice, what would it be? Learn all you can, keep love in your heart, find what you love and do it!                     
Would you break the law to save a loved one? Another hard question. Honestly, this would depend on the situation. Would I murder someone or rob someone or someplace NO but if one that I loved was at risk of harm if I did not step in then yes.     
 Have you ever seen insanity where you later saw creativity? Every morning when I wake up. :)                                                                                                              
What’s something you know you do differently than most people? I eat the ham in my hot pockets first then I enjoy the yummy cheesy bread goodness. (Deep I know. lol)                                                                                   
How come the things that make you happy don’t make everyone happy? Personal preference. The world would be a very bleak place if everyone shared the same happiness.                                                                                                             
What one thing have you not done that you really want to do?  What’s holding you back? I really want to go zip-lining but at the moment my fear of heights is holding me back.                                                                                                 
Are you holding onto something you need to let go of? The short answer bitterness.                                                                                                                                           
If you had to move to a state or country besides the one you currently live in, where would you move and why? At the current moment I can not answer this. Every state and country has their own set of laws, their own flaws and other valuable statistics. If I were to move this move would involve my children as well and I would not be able to make such a step without properly investigating all there was to know about the area, the good, the bad, the ugly.   
          
Do you push the elevator button more than once?  Do you really believe it makes the elevator faster? Do I regularly no, have I yes. Do I think it made the elevator go faster no, but it can make the doors shut sooner.      
                                   
Would you rather be a worried genius or a joyful simpleton? A joyful simpleton...ignorance is bliss right?         
                                                               
Why are you, you? I am me because of how I was raised, the experiences I had, the choices I made and the path that I took in life.        
                                                 
Have you been the kind of friend you want as a friend? I believe so, any friends wanna comment on this one?                     
                                                                   
Which is worse, when a good friend moves away, or losing touch with a good friend who lives right near you? This is a tie as both are equally as painful.  

What are you most grateful for? My family and true friends.        
                                
Would you rather lose all of your old memories, or never be able to make new ones? Never be able to make new ones without a doubt! Old memories are something I could never get back but if I could not make new ones I would just have to photograph everything that way I could look through the photographs and experience those events over and over again...even if I did not remember them with any great detail.                                              
                                                                                
Is is possible to know the truth without challenging it first? This, I would say, depends on whose "truth" you are hearing. Recently my daughter came to me with something very important, after hearing her say it and the details she gave about the even I know in my heart she is telling the truth. I talked with one of the individuals she mentioned about the situation and he lied. His truth was not a truth at all, that was made clear from the very second he responded. In turn, I am glad that I believed my daughter from the start.          
                                                                                            
Has your greatest fear ever come true? Simply stated, yes.      
                              
Do you remember that time 5 years ago when you were extremely upset?  Does it really matter now? 5 years ago, off the top of my head no. I remember other times when I was really upset and yes they matter now as some of the events reshaped my life.                                                                                                                  
What is your happiest childhood memory?  What makes it so special? Opening the door of the pantry and having what seemed like a million balloons come pouring out. This is a special memory because now that I am older and have children of my own I understand the time and effort my parents put into holiday celebrations and traditions.                                                                                                                                   
At what time in your recent past have you felt most passionate and alive? Last night, in the car while having a "deep/in depth conversation with Joe.                      
If not now, then when? When the time is right.                                                                  
 If you haven’t achieved it yet, what do you have to lose? Nothing to lose but fear itself.                                                                                                                   
Have you ever been with someone, said nothing, and walked away feeling like you just had the best conversation ever? No, but it sounds really interesting.                                                                                                                                       
Why do religions that support love cause so many wars? Religions don't cause wars, people do. People chose what inspires them and people chose what to do.  Some people chose war while others choose love.                              
                              
Is it possible to know, without a doubt, what is good and what is evil? No there are too many grey areas.                                     
                                                             
If you just won a million dollars, would you quit your job? Eventually but only to pursue other opportunities I could now afford to like volunteer work and traveling with my family.                                                                                                                 
Would you rather have less work to do, or more work you actually enjoy doing? More work, idle hands are the devils workshop. ;)             
                                        
 Do you feel like you've lived this day a hundred times before? Nope.                
 When was the last time you marched into the dark with only the soft glow of an idea you strongly believed in?  Every time I pick up my camera, start editing a photograph I took or write a blog post.                                                       
If you knew that everyone you know was going to die tomorrow, who would you visit today? My family; we'd all meet at one central location.      

Would you be willing to reduce your life expectancy by 10 years to become extremely attractive or famous? No.       

What is the difference between being alive and truly living?  "Being Alive" is the physiological opposite of being dead; satisfying basic needs: food, shelter, clothing, medicine, warmth, a job, procreation, companionship, etc. "Living" is when we honor our values and passions on a daily basis.                                                                           
When is it time to stop calculating risk and rewards, and just go ahead and do what you know is right? No better time than the present.   
                                      
If we learn from our mistakes, why are we always so afraid to make a mistake? I feel it is human nature to want to succeed therefore we sometime affiliate making a mistake with failure and no one wants to fail                           
                              
What would you do differently if you knew nobody would judge you? Nothing. I am perfectly content with who I am as a person regardless of any judgement I receive. Especially considering those who would or do judge me most likely don't TRULY know me and do not play important roles in my life anyway.

When was the last time you noticed the sound of your own breathing? Last night when I was attempting to overcome my insomnia and get some rest.        
      
What do you love?  Have any of your recent actions openly expressed this love? This could take forever so I will keep it short and simple by saying I love lots of things and people and yes I have openly expressed such love. (I will address this topic in a future blog post.)                                                                                                                       
In 5 years from now, will you remember what you did yesterday?  What about the day before that?  Or the day before that? I will, thanks to this blog and various social media outlets.                                                                                                   
Decisions are being made right now.  The question is:  Are you making them for yourself, or are you letting others make them for you? I am making most of them myself with guidance from a few select individuals whose opinions I trust.