Just when things couldn't get worse...

OK... Lets recap the last month shall we?

Our minivan broke down.
We got the minivan working.

Someone called CPS and lied about us, causing Samantha to have her rights to dignity and privacy horribly violated.

The minivan broke down... Again.
We got the minivan working... Again.

Samantha's eczema is acting up so bad it almost looks bloody.

We had a meth lab busted right next door to us. They had a full lab and finished product. They only spent one night in jail for it. They are back to their old routine already.

We drove six hours to see Samantha's seizure specialist, who I am still not very pleased with, because he treats me like I have no idea what I'm talking about.
We drove six hours home.

The minivan broke down... Yet again.
We think this might be a sign...

Darrell broke his hand at work. It is a bad break that the doctor does not want to cast, so he will be out of work AND unable to lift either of the kids for AT LEAST a month. The place he works is trying to make him come back to work even though the doctor said not too.

My fibromyalgia is acting up again which means I hurt in places I normally don't even feel. That makes it extremely hard for me to lift and take care of the kids.

To top off everything else, tomorrow is Auron's first birthday, and while I was in Wal-mart this morning getting supplies for his cake, he threw up on me. Shortly after that he started running a hundred degree fever.

NEVER SAY THINGS CANT GET WORSE!
LIFE LIKES TO MAKE A FOOL OUT OF YOU!

An update of sorts...

I think I am starting to recover from the CPS attack. I am sure the investigation is not over yet, and they will be back to terrorize my family more before they decide to go away and leave us be. Child protective services seems to be the only group of people in America who believe you are guilty until proven innocent.
It kills me that someone would ever think we might hurt Samantha, and it is even worse that their false accusation forced a medical exam on her that in my opinion was tantamount to assault in itself. We have spent the last year or more teaching her to fight anyone that tries to touch her inappropriately, and then CPS forces it on her. They have no idea how bad they have derailed what we are trying to teach her about her right to privacy and her right to protect herself. She kept trying to kick the doctor who was doing the exam away and cross her legs. (good for her!)
I feel like I can no longer trust ANYONE outside of our immediate family to care about what is best for Samantha. I know they "THOUGHT" they were protecting her, but there should be a MUCH less invasive way to investigate.
The system that is in place is terribly broken. Samantha was upset and did not act like herself for about four days afterwards. She has just started getting back into her groove the last few days. I guess that is my update for now... Sorry it isn't more eloquent... But things have been too rough around here for me to think straight... Much less type that way!

Another Poem about Sam...

My Everything

When I am discouraged and heavy hearted

Your laughter lightens my load.

When I am overwhelmed and weary

Your baby touch gives me the strength to carry on.

When I am angry for all we must fight for

And the daily struggle to survive

Your angel smile reminds me

There is a purpose for everything.

When I am happy

Your joy amplifies mine to unimaginable heights.

When I cry for the things you will miss in life

You show me the things everyone else will.

You are my inspiration and strength.

My faith and love surround you.

My daughter, my angel, my teacher.

My everything.

ANGRY/Sorry/helpless...

I am ANGRY for you.

I am ANGRY that because some

"Well meaning" moron lied,

You were hurt.

I am ANGRY at myself for you.

You trust me to protect you from

"THEM".

I was unable to protect you.

I am so sorry.

I am sorry I was so afraid of "THEM",

When you needed me to be strong for you.

"THEY" threatened to take you from me,

And that threat shattered my heart.

I was too frightened of loosing you to a lie

To protect you from it.

I don't know how to make things better again,

And I'm sorry for that too.

I want to hold you in my arms forever

And protect you from the world.

There are so many of "THEM" in the world,

And only one of me.

"THOSE" who will never understand you.

"THOSE" who will always look down on you.

"THOSE" who will hurt you

Or unintentionally cause you harm.

I want to keep you in a rose tinted bubble,

So you do not have to see the ugliness in the world,

And so "THEY" can never touch you.

But you have seen the ugliness.

And I was helpless to stop "THEM".

I was unable to protect you,

And I'm sorry.

Bad Day...

I have had a horrible day, and needed something a little uplifting so I thought I would share this song with you. I don't really want to get into it, but the short version is this: Someone called child protective services on us and made an accusation that makes me sick to even think about. My beautiful little girl had to go through a very personal exam by a complete stranger, just for them to figure out that nothing has happened to her. (DUH!) They are dropping the case, but the whole experience was very upsetting to our family.
This is one of my favorite artists, mainly because she seems to be in my head. Enjoy. I probably will not post for a few days while I am recovering emotionally from the trauma inflicted upon my family today. I will be back eventually though.

Something Beautiful
-Natalie Grant

This is a song for anyone whose ever been
Knocked down and can't get back again
Stuck in the corner, and cant move forward
All alone and you think you're going nowhere
This is a song for anyone who's ever stood
Underneath the sun
And felt so small two feet tall and so out of place
He sees you- He knows you- He loves you
And he wants you to know that

(Chorus)
The life you've been living
the days that You've been given
Were made for something Beautiful
Life- don't let it pass you by
Because you were created for something Beautiful

Heaven holds a dream that's just for you
And there are things only you can do
So step By faith, put the past away
It'll take you to a better day
Second to Minute to hour to life
Time always seems to fly
It's on the go and before you know
Your days are through
But he sees you- He knows you- he loves you
And he wants you to know that

(Chorus)
The life you've been living
the days that You've been given
Were made for something Beautiful
Life- don't let it pass you by
Because you were created for something Beautiful

What are - you waiting for
What are you - waiting for
What - are you waiting for

Something Beautiful

Listen to the Mustn'ts...

This is one of my favorite poems by one of my favorite poets. I used to read it to Samantha every night before I put her to bed. I got tired of her hearing nothing but one doctor after another saying she wouldn't do ____, or couldn't do______, or would never be able to do____. I wanted her to learn to ignore them, and maybe even get mad enough to want to prove them wrong. I wanted to share this with you all tonight because I am feeling rather grim about some things, and it lifts my spirits a bit. Never let anyone tell you that something cant or wont happen... There is no such thing as impossible... You may have to fight tooth and nail... It may take much longer than you want it to... But NOTHING is impossible.

Listen to the Mustn'ts

Listen to Mustn'ts, child, listen to the Don'ts.

Listen to the Shouldn'ts, the Impossibles, the Won'ts.

Listen to the Never Haves, then listen close to me.

Anything can happen, child, Anything can be.

-Shel Silverstein

Samantha...

This is a photo of my beautiful daughter Samantha. I felt everyone should see it, so you have a picture in your mind when I post about her.

Who could have guessed that such a little sweetheart could make me feel so many emotions at the same time.

Her medical issues have terrified me and broken my heart more times than I can count. Her perseverance and joyful spirit have transformed me into a stronger person.

I'm not sure if I'm a better person because of her, but I want to be a better person for her. This is my life with my daughter, and I am thankful for all the hard times, because it helps me to appreciate the mundane moments in life for the miracles they truly are.

I hate seizures...

Samantha's seizures have gotten worse again lately. We have to drive six hours to see her specialist at the end of February to see if there is anything else we can do to help control them. I'm not sure there is anything else we can do. She has an implanted device called a Vegal Nerve Stimulator, that is like a pacemaker for seizures, and she has already been on almost every anticonvulsant available in the United States. We had fifth Sunday singing at church tonight, and we thought she had fallen asleep during the service. That is until I tried to wake her up. She was having seizures and we had to rush her home to give her emergency medication. She is fine now, but I feel so helpless.

I hate to see her like this.

One of the ladies that goes to church with us kept telling me how scared she was, and how she didn't think she could handle it to see one of her kids go through the things Sam has. No one ever thinks they could handle it. I certainly didn't. Not until it WAS my child. I never thought I was a strong enough person to do CPR on both my kids... But I have. I never thought I could handle watching my daughter go through more operations and tests before her sixth birthday than most people experience their entire lives. I never thought I could handle watching my son stop breathing time after time, and have a kidney removed at three weeks old.

Its amazing what you can handle when it is your child.

I never knew, before my kids were born, how absolutely in love with someone I could be. When it comes right down to it, the reality is, unconditional love is such a very rare thing. I am a very lucky woman, because I know that kind of love, here and now. My children, even with all their problems, are the center of my universe. Its hard to describe to someone who doesn't have children, the emotions that well up inside you when your kids are sick.

I wish that Samantha's seizures could be brought out and turned into a physical form, that I could beat the crap out of. I wish I could stop them, and regrow the mylan around her brain and nerves with the sheer force of my love for her. I wish I could wrap my soul around that missing chunk of her fifteenth chromosome, and magically remove Angelman Syndrome from our lives.

But I cant. I am helpless against this enemy that threatens to kill my little girl every hour of every day. All I can do is sit here and cry, and pray that I don't loose her. I never cry where she can see me. I don't want her to know how scared I am every day for her. I don't want her to know that I am so much weaker than I let on. I am so tired of having to fight so hard just to keep her healthy. But I will keep fighting for her, because she cant fight for herself, and because I will never loose hope that maybe...

just maybe...

my love for her will make a difference one day.

My tattoo...

This is another one of those rare photos that make me feel pretty. This one was taken by a dear friend of mine Shalina Christesson, shortly after I got my tattoo. The quality of this photo is much better on the actual print, but the scanner had problems with it. You get the basic impression of the photo however, so I'm not too disgruntled with it. One of these days I will share some of my own photography, but for now... Enjoy Shalina's work!

Darrell's birthday today...

Its Darrell's birthday today!

Happy Birthday Honey... I love you!!!

Other than that... I'm kind of boring today, so here are some links to some other people's blogs I enjoy reading...

The Splintered Mind by Douglas Cootey

dooce

Criminally Stoopid

Hall of the Slain