Wednesday, August 25, 2010

Expectations

I had a vision of all that I wanted for my child, way before she was ever even born.

I wanted her to ~

Be happy.

Be healthy.

Do well in school.

Play sports.

Be a carefree child and teenager.

Go to college.


I wanted her to ~

Have the best experience.

Work hard.

Be self-sufficient.

Have great morals.

Be kind.

Be giving.


I wanted her to ~

Meet someone.

Fall deeply in love.

Come home and visit all the time.

Share all of her exciting news with me.

Travel the world.

Have a deep love of animals.

Get married, if that is what she wanted.

Decorate her first little home, with me by her side.


I wanted her to ~

Maybe have children.

Raise them, surrounded in love.

Be part of a happy family.


As I heard the words...

If she survives, she will most likely not be able to walk, talk, eat by mouth, and possibly not be able to see or hear....

I vividly remember every conceivable dream come crashing down in one single moment.

As we worked endlessly throughout the night installing our hardwood floors, I remember pausing, mid-board and emphatically telling Dave....

I cannot have a child that can't walk.

I cannot have a child that can't talk.

I cannot have a child that can't eat by mouth.

I cannot have a child that can't see.

I cannot have a child that can't hear.

I have found myself with just about ALL of the above. What I have discovered is that I can, and I will!

I have a new and improved vision for my little girl.  This image is drastically different from my old one.

I want her to be healthy.

I want her to be happy.


Monday, August 23, 2010

Sick

I ran, but not fast enough.

Baaaa Hooooo!

or should I say...

Ahhhh Choooo!

Saturday, August 21, 2010

Quote

"When you know better, you do better."

~ Maya Angelou

Thursday, August 19, 2010

Flashback Friday

Where on earth have I found so much time to blog?

Our little "Iron Woman" has finally caught a cold. Dave got sick about a week ago, and yesterday, Avi started sneezing, over and over and over again.  She is so congested, yet her nose is running.  She is coughing almost non-stop.  My poor girl!

I have been known to have a love/hate relationship with The Institute. Mostly love though.  Well today, I can safely say....

I

LOVE,

LOVE,

LOVE,

you

Institute

program!!

I have never felt so helpless, as when we brought Avi home from the hospital.  I felt like my hands were bound together with duct tape, and I was simply made to just sit and watch her.

Those days were some of the worst.  As she would sit, I would stare. I was broken. I basically had not one tool in my belt.  I asked myself daily, "How can I fight this beast, while unarmed?"

The Institute set us free.

They gave us flight.

They have offered us all we could possibly need.

I will be forever grateful to them.

Today, Avi is missing her entire program. While I am enjoying my quasi-free time, and while I love cuddling her up all day long, I look forward to getting "The Village" back in place.

P.S. Please say a little prayer that I don't get sick too.

Thank you!

I Swear

Yes, I cuss.

You may not know, or like it...hell I don't even like it.  To me, it can be such an unattractive quality, but in my life, so necessary at times.  Okay let's be honest, if you ask me, necessary at a lot of times.

Below, you will find the cuss-o-meter.

When Avi used to throw up...

lots.

When I would blow food all over the couch....

Somewhat.

When I shot purple food all over the ceiling....

Like a sailor.

When I would be doing my ump-teenth load of laundry....

Lots.

When goo would erupt like a volcano, covering everything in sight.

Tons.

When I would break glass....

Like a crazed lunatic.


I think I just may have turned over a new leaf!


In the past week,

I have broken glass....

nothing, just went and got the broom.

Dropped and almost broke more glass (scared my fish to death, as it bounced off his bowl)

nothing, carried on.

Shot food all over Avi and the couch....

nothing, just went and got a boat load of towels.

Dave broke glass....

nothing, just went over and helped him clean it up.

Got glass in my finger....

nothing, just dealt with it.

Dropped TWO frozen, plastic ice pack things, almost on my toes to boot,

nothing, just picked them up.

It doesn't help,

it's not good.

Could it be...

Am I finally growing up??

Are my sailor-istic ways finally evading me???

Sheesh! It only took 35 years.

I will never say recovered,

as I'm sure I will slip and slide!!

There sure are lots of butterfingers within this household ;o)

** Realization**

It's a good thing my couches were green to begin with!

Lately




I am so behind on posting pictures from this past month....






Ummm, Yummy, Green Goo!!




Little bunny, kicking back in the swing!





One of the best experiences of my whole life, holding a Giant Walking Stick. Funny, because I had just recently taught Avi about this beautiful, amazing creature, and BAM...there it was!





Yes, that would be me, putting a huge cockroach on my baby.





I think it goes well with her dress, don't you?






She had enough of my antics and decided to drift off.






Awwww.






Now for my favorites, the sleeping beauty pictures.






Avi and her Kama look alike.






Avi said, "Enough with the look alike, I want the real thing."







LOVE










Wednesday, August 18, 2010

They say it's your birthday




Aviana's birthday started off with a cat nap.







Then, we were then off to Six Flags Discovery Kingdom.






My Mom, Gary, Aunt Rella, Summer, Avery & Addison joined in the celebration.





Every which way we turned, someone was there to wish Avi a Happy 4th Birthday!






I honestly thought this guy was going to bust out in song.





Right when I walked up, this guy immediately wandered on over. I loved him.




My favorite....always!





Aviana, on her first ride of the day.






Ha, Ha. As we got going faster, Dave had to hold her head up so she could see. I love this picture.






I have no words.






What a sweet little girl...you are my world!






I love this one because she looks like she is about to whisper something to him.






She loved the wind in her face.





Summer, Avery & Addison too.





She's in there, I swear Dave didn't go on this ride by himself :o)






We had come home from Six Flags, got a second wind, went to sushi and then came home for a cupcake. Avi was so wiped out at this time and just wanted to go to bed!






Kama ~ barging in on Aviana's cupcake. Some things never change!






I could hear Avi in that moment, "No Kama, Avi's cupcake!!!!"


Night, Night beautiful. I am so happy you had a fun filled 4th birthday!

Monday, August 16, 2010

Happy Birthday Beautiful

Dear Aviana~

Today you are turning 4 years old. I think back to your 3rd birthday, which was spent in the hospital, and I am so happy with all of the progress you have made.

You have come so far.  You are the strongest person I have ever come across. Day after day, you show us you are still the same old you.  You have such fire and passion within, and I am happy to be witness to it on a daily basis!

You, and your story have inspired so many people, far and wide. Especially me. You have made me a better person.  Because of you, I am more patient, loving and compassionate. You have pushed me further, and stretched me farther in every way. You have made me realize, I can accomplish anything, whether it be physically, mentally, or emotionally. You have brought me to levels I never thought possible.  Through you, I have learned that anything is possible!  

You bring the best out in every person who comes into contact with you.  When I look at you, I am filled with pride.  Above all, I feel the purest form of love ever. You are my baby, and no matter your age, you always will be.

I promise to love you for eternity, but most importantly, I promise to go to the ends of the earth to help you to recover.  I promise you that your Daddy and I will do anything and everything to help you, for the rest of your life.

I admire you more than you will ever know. You are the hardest working child in the business. I just know that one day we will look back on all of these relentless work filled days, and be so happy with what we have accomplished.

You are worth every minute, of every day.  You are a true labor of love.  We are both so happy to have you here with us.

I hope you enjoy your day. I will be thanking God for you today, as I do everyday, for blessing us with such a beautiful baby girl.

I love you with every bit of my being!

Mommy

Sunday, August 15, 2010

Our Daily Blessing

One of my very favorite bloggers is Amy, from "Our Daily Blessing....Life."  She is one amazing woman. She is by far one of the most inspiring people I follow.

Her son has had 19 brain surgeries and is one of the strongest people I have ever witnessed.  While caring for Philip, she discovered she has cancer.

She had started a business in order to help pay some of their medical costs, but in battling her own disease and caring for her son, husband and 3 other children, she has obviously not been able to focus her attention in that way.

She is about to embark on a very costly medical endeavor that can potentially help Phillip immensely.  Financially, she is not really in the position to move forward, but is going to anyway, as he needs this to work in the worst way.

If you would like to purchase something to help with her medical expenses, her website is~

https://dippin4divas.com/

If you would like to send some love and prayers her way, her blog address is located on my sidebar. I tried to post the link, but it would not work.

Thank you so much!

Thursday, August 12, 2010

She's Having a Baby

There are always things I thought I told you, but come to find out...I didn't!

Michelle is 5 months pregnant. She is having a little baby girl. As you can imagine, we are so happy for her, but so sad for us.

Michelle is the best of the best.

She's the cream of the crop.

There's no one like her.

She's got that certain....I don't know what,

but it's GREAT!!

I am beyond sad to lose her. I am rebelling in my own way, by not even looking for another, not even thinking about it.  I keep telling myself that if I turn the other way, stick my head in the sand, put my fingers in my ears and scream at the top of my lungs, "LA, LA, LA, LA" it may not happen.

She finally looks pregnant and let me tell you, her baby belly is telling me otherwise.

I'm soon going to lose her.....

I can't deny it.

I can't hide from it.

I can't look the other way,

stick my head in the sand,

or my fingers in my ears.

If the way she is with Aviana is any indication of what kind of mom she will be,

Without a doubt,

she will be the best mom ever!

Tuesday, August 10, 2010

Friday, August 6, 2010

Uncle Roger

Avi has always had a special connection with her Uncle Roger. When they caught a glimpse of each other, the hugest smile would appear.  She would always look forward to seeing him, and still does.

After the accident occurred, he was a constant at the various hospitals. The staff knew him as well as they knew us.

When Aviana was in therapy at UCD and Kaiser, he would go to many sessions. He would be along side me, learning all there was to learn.

One of the most difficult and stressful times for us was as the entire insurance aspect unfolded. Uncle Roger was there for all of us with great advise, and most of all, continuous support.

I don't know if you remember, but he and his wife Rella were the ones who courageously took on the task of hand delivering Avi to Philadelphia for our very first trip to The Institute. They not only brought Aviana, but spent many long hours with us listening, learning, and helping.  Prior to that, he was assisting my Mom with Aviana's constant care.

Roger has consistently come over at least one day a week ever since we have been home from the hospital. He jumps right in, like an extension of us. His knowledge of her care stretches far and wide.  He knows everything from all of her therapies to her ever-changing feeding needs.

He is not only a constant presence, but he is also a continual source of ideas, articles, dvd's, books and just plain knowledge. He is fascinated by the brain and forwards every single bit of potentially helpful information our way.

Roger~ We could never put into words how much you mean to us,  and just how incredibly thankful we are to have you.  We love and appreciate you so much!




Avi has always loved her Uncle Roger.




Easter sure can be tiring!




My favorite while in the hospital.




I love this one too.




Early in the morning, before a long day at The Institute.




You may remember this oldie, but goodie! She wants to be just like him, wear his glasses, read books he recommends ; )





Roger is a calming force. Aviana is always so relaxed when he is around. 




At times, they even dress like each other!

Wednesday, August 4, 2010

Runaway

I freaked, so I ran.  I didn't know what I was going to do, but I did know one thing for sure,  it involved leaving town.  The only place I ever want to run to is Tahoe, so there I went.

Prior to leaving, I decided on exactly what I wanted to do....


Heavenly Flyer


A ZipRider Experience The Heavenly Flyer, a ZipRider experience, is located at Adventure Peak. Enjoy the Heavenly Gondola ride that will take you up to 9,156’. From there, you'll hop onto the Tamarack Express to get to the zip line take-off deck. This elevated zip line cable ride will take you on a high speed thrill ride from the top of Tamarack Express back to the top of the Gondola, a vertical drop of 525 feet. At 3,100 feet, the Heavenly Flyer is the longest ZipRider in the lower 48 U.S. states. The views are spectacular and zipping through the trees and over the Gondola will add perspective, making this an ultra-cool ride.


I immediately jumped on the phone, just to find out it was closed and they were doing work on it.  I had known of an accident last year that sadly killed a man, who was on his honeymoon.  She was vague on the phone, but after prying, I gathered that it may have been closed since.

Now what?

I didn't know what to do, what to wear, what to bring. My mind was cloudy,  so I just got in the car and left.

I turned the music WAY up, and was Tahoe bound.

As I got to Truckee, horseback riding sounded more than appealing.  I looked down, and the last time I checked, they don't accept someone in short shorts and high shoes.  What was I thinking? Obviously, I wasn't.

What to do?

What to do?

At that moment, I looked up into the clear, blue sky and saw a beautiful yellow glider.  I looked back down at the road and to my right, there was a sign, Glider Rides Here *arrow pointing left*  I've driven by that advertisement a million times, and never once thought to do it. For some reason, at that moment, nothing sounded better.

Within minutes, I was hopping into the plane,  asking, "hey, does this thing goes up-side-down?"  No, was the answer, but he promised a wild ride. Perfect. The pilot ended up not being able to find any good thermals (air pockets, who knew, not me) But it was great nonetheless.



I had no idea that you get pulled into the air. Who'da thunk :o)



Up, up and away!




Into the great, wide open.




I then went and had lunch on the patio overlooking the lake, hung out with my dad and brother a little, and drove home. Sounds like a good end to the story, right? There's slightly more, but another time.

I wanted to thank Dave for never minding my runaway tendencies. You truly are so amazing on every level.

And, thank you to another who makes my abandonment completely possible....Michelle, you know exactly how I feel about you. I have no idea what I am going to do without you!

Thank you to all of YOU who support me. You have no idea how much every single one of your comments mean to me!  I take your words and use them as fuel to get me through my day. YOU are so appreciated!!


Sunday, August 1, 2010

Today

I want to crawl under a rock and not deal with anything, anyone.

I want to blink my eyes and be anywhere but here.

I want to run to the top of a mountain and scream bloody murder.

I want to rip my hair out.

I want to cry until I can't cry anymore.

I want to wring necks.

I want to spontaneously combust.

I want to throw things....oh wait, I did that.

I want to hug on to Kama tight and never let go.

I want to drive away and never come back.

Why...

I want my family back, as we were....happy, healthy, laughing, carefree and full of life.

I want my Mom and Gary to have their healthy granddaughter back.

I want them to be able to enjoy every bit of her.

I want her to make them laugh and light up their lives,

the way she used to.

I want their guilt to vanish into thin air.

I want my healthy girl back.

I want her to run,

to jump,

to swim,

to draw,

to eat,

to her heart's content.

I want for her to not know what the hell therapy is.

I want to hear her sweet little laugh,

see her breathtaking smile.

I want to know what she would be saying,

doing,

thinking.

I want her to have all of her friends back,

I don't want them to be scared of her,

not really notice her.

I want them to be able to play with her,

like they used to.

I can't find one ounce of optimism today,

and I don't care.

I don't care.

I don't care.

I don't care.

I don't care.

I don't care.

I don't care.

I don't care.

I don't care.

I don't care.

I don't care.

I don't care.

I don't care.

Hopefully,

tomorrow...

I will care again.