A New Day - A New Way

Aviana starts school tomorrow. I am so excited for her. I think she will love it. We have decided on two days a week. We also decided to send her on the bus.

They came to check her wheelchair last week, and I just had to take a picture of the cute little, (or short if you prefer ; ) bus. She will be the only one riding. I just know she will thoroughly enjoy the entire experience. 

I, on the other hand, will be a wreck. At least at first. As my mom always says, "everything is difficult at first, and then it gets easier." Such fine words, from such a fine mommy. I can't imagine sending her off to school...disabled. The most difficult part for me is - if anything were to happen, she's not able to tell me. That rips me up inside and causes me to lose sleep at night.

Oh well, it's what's best for her and so it will be.

Like I have said, I've been slightly out of sorts with this headache medication and so all weekend I was asking Dave, "are you sure we have everything ready for Aviana for school?" Well, today I figured out the answer to that question and it was 'no!'  We were at the mall and I didn't even think to get her a new backpack. So I went online, and of course the one I want is catalog only.

What to do. What to do. Do I dare brave the drawer? You know the one. The one that contains many of the things we can't bear to see from before the accident. Do I unbury the backpack I searched many towns to find for when my healthy child was off to preschool? 

Well, I decided to bring the darkness to light, because these are the very things I feel I need not be such a wuss about. When the Little Lady and my eyes first met, I can't lie....it hurt like hell. Actually, all the moments thereafter felt the same. It's amazing the damage a simple, sweet, little ladybug can ensue on one's earthy soul.

As I sit wiping away this steady stream of tears, I think - there's really something to be said about wussing out!

Avi ~ My Love

I wish you the best first day of school ever. I will miss not being able to kiss you anytime I want throughout the day!

I pray you are surrounded in the most kind hearted people your school has to offer. My hope is that all those people sought those positions purely for their love of people such as yourself. Because you my love, you are something extraordinary. 

And by the way, if anyone hurts you...I will find out, and I will hurt them too.

All my love to you,

Your Mommy

Broken Record

Do you ever get tired of hearing me talk about the accident?

Or the grief over her brain injury?

Or how hard it is to stare this wide range of ramifications in the face all.day.long?

Or how difficult it is to be the caretakers of such a severely disabled child?

Or how emotionally draining all these varying decisions are?

Yeah...me too.

It gets old,

Quick.

I get tired of sounding like a broken record.

I feel as though I have been talking about the same thing,

For close to three years now.

I bet if I backtrack a few years,

I would pretty much see the same things being said.

I don't understand how to 'move on' from our situation.

Actually, in the beginning I had a much better grasp on everything.

As the years have passed by, my comprehension has become clouded.

Sure there are some very small ways in which we can move forward from this,

But in many larger ways, we are either backtracking,

Or,

We are completely stuck in the mud.

And those words,

Move on....

Well,

In reality,

They're just words.

Happy Day

Today was my Uncle Roger's birthday. We were lucky enough to spend the day with him. I know you've heard a lot about my uncle. He has been coming over to our house every Thursday since Aviana's accident. Can you imagine? That's close to three years now. You may be thinking he lives close to us, but he doesn't. Barring traffic, it takes him about 45 minutes each way. Now that's love.

I always look forward to his visit - for a multitude of reasons. He loves spending time with Aviana. He genuinely loves being with her. Truthfully - he, my mom and Gary don't really come to see me. I just happen to be the one who opens the door (wink, wink)! Most who come to our house, somehow inadvertently and for various reasons end up interacting mainly with us. Sadly because Aviana doesn't interact by doing all the things normal people do...she becomes a wallflower. Roger's full attention is always on Aviana and I just love it. And of course...she does too!

My uncle is a walking encyclopedia, but in a good way. I love talking to and learning from him. He's had and continues to have, such an interesting life. He's inspiring, and gently nudges me to always pursue my passions and dreams. I need, and appreciate that greatly, because we can easily get lost in Aviana's unending attention and care. Week after week, I realize - he makes me a better person by just being around him.

I also always know I can do whatever I need on Thursdays. No strings attached. No guilt. No drama. No bad feelings. In my experience, help often comes with some sort of something attached...at some point. And for that exact reason,  I tend to take everything on myself! Not with Roger. I usually prefer to stay around, but also know if I need to run errands, my uncle's got it covered. Not only does he have it covered, but when I return from wherever I am, Rainey is sure to be panting and Aviana's wearing a perfectly sun kissed face. My uncle will have taken them to the park for some much needed fresh air. The wheelchair, the Chuck-It, the leash, the bags, all back in their places. And Aviana...perfectly at peace on his lap listening to one of her favorite books. It's truly amazing.

He's there in every way possible. He has helped us with patterning and all kinds of other therapy. He and my Aunt Rella have traveled back and forth across the country to Philadelphia twice with us to The Institutes. Dave discusses financial decisions with him. He has talked us through life and death decisions regarding Aviana. He was there for me through some of the very worst moments with Kama. He helps my mom and Gary with everything they've been through with this tragedy, and more. He mediates between this crazy one of us, and that one. He has no problem putting aside whatever it is he is doing in order to be by our side.

I feel bad sometimes because there is something about him every Thursday...that brings on the tears. I couldn't quite figure it out until this past week. I nada  pattern of being strong all week, and then, I would take one look at him, and break. It was because I care so much for him and know he cares equally for us. That particular dynamic causes that to happen. I notice I do the very same thing with my mom, and my dad too. I'm sure you can relate. One look at people who care deeply, or just hearing their voice, and it's over....the floodgates have released!

Roger has been an absolute rock for us. I am so thankful for him. We would surely be way worse off! I hope everyone has someone like him in their life. He makes for a much richer, worthwhile journey.

As you all know, I struggled greatly to bond with Aviana. After the accident, it finally came completely full force and naturally - just as I had always wished for. I put the relationship I have gained with my Uncle Roger right up there with the one I have with Aviana.  It's amazing the blessings, which come from the ashes.

Amy and I asked Roger what kind of Birthday Pie we could make for him.

He requested Chocolate Cream.

 Apparently Uncle Roger got Aviana's "don't forget to wear an orange shirt and blue pants" birthday party memo!

"You're The Best Uncle A Girl Could Ever Have Pie." 

Faith When I Fall

Mom - listen, I think you'll like it : )

I know it's been a long time since the last time we talked
I know I've been a stranger and that's all my fault
And asking you for anything don't really seem right
But the weather change a blown'
So I'm begging you tonight

Give me love when I ain't got nobody
A little hope when I ain't got none at all
Give me light up ahead on a journey
Give me strength when I'm standing
And faith when I fall

I know the rain is coming and it's sure gonna pour
I no there ain't no running from this kinda storm
It's gonna get hotter and hotter, they keep on pushing through
I'm gonna wanna quit, so I'll be counting on you

Give me love when I ain't got nobody
A little hope when I ain't got none at all
Give me light up ahead on a journey
Give me strength when I'm standing
And faith when I fall

When the clouds start parting and the sun starts shining through
This time I won't forget, I won't forget about you

Give me love when I ain't got nobody
A little hope when I ain't got none at all
Give me light up ahead on a journey
Give me strength when I'm standing
And faith when I fall

Give me strength when I'm standing
And faith when I fall, yeah

Everybody Hurts

To some degree,

Everybody hurts.

For that, I am sorry.

I'm sorry for whatever pain you are experiencing.

My heart goes out to you for whatever it is that hurts you,

That causes you to lose sleep.

For whatever it is you can't seem to shake,

Or seems unfair,

Or unjust.

Is the Grief Monster your shadow, too?

Please know, that as you walk through your day,

I feel for the things that turn and sting you.

The things that could have,

And should have been.

But sadly, are not.

I often wonder what your struggles are,

What your pain is,

How you cope,

And continue on.

Above all,

And, even though I don't know,

I want you to know,

I care about you,

As you have shown you care about us!

You What?

The big celebration will begin in 3 minutes. There will be lots of love, tons of kisses, and plenty of play. 

Rainey Girl will be turning 2 years old. 

In a world of darkness, she has been our light. She has surely saved my life. I know that sounds extreme, but it couldn't be more true. She is my saving grace. She is my love.

I decided to make her a cake for her birthday. She's having some friends over tomorrow. Actually, we have been puppy sitting for a few weeks, so Joey will be here and then her best friend Oski, will come over too. We are planning on taking them all to the park and then we're going to come back for some cake.

Here are the makings for the ~

Who Let the Dogs Out Bark Day Cake...

I found a recipe online and went to the store to buy the ingredients. I was waiting in line and behind me, was a couple of guys, with a couple cases of beer. They surveyed my items and said, "peanut butter, bananas, berries and candles, huh?" I said, "yep." They then asked, "what are you going to do with all that?" I told them I was going to make a cake. They then asked what kind of cake, as they thought my ingredients were kind of strange. Why thank you dudes with beer ; ) I then told them it was for my dog. In unison they said, "Your dog?!?" I said, "Yeah, my dog...it's her birthday tomorrow." Let the fascination begin!! They then had a million questions! The first being, what kind of dog. I think they expected me to say, Chihuahua, or something small, but I told them what she was, which is Lab/Pit/Mutt/Mix.

I then finally got to the checker. I had combed the aisles looking for party hats. So I asked her if I had missed them. She said no, she didn't think they had any. I thought that would be the end, but she then asked, "Ooooh, is it someone's birthday?" I said yes, and hoped for the end of the conversation. She then asked whose, and if I was making a cake as she scanned the whole wheat flour. The beer guys chimed in that it was my dog's birthday. Suddenly, I felt like the lonely cat lady, but with a dog. It was a really weird experience, but pretty funny too ; ) 

It's okay though, because it will be priceless to see the free for all when Rainey and her doggie friends dive into her cake, party hats and all. 

It all kind of reminds me of someone else's birthday party.

Someone I miss deeply.

Every - Single - Day

Sometimes You Feel Like A Nut

I'm on a mission to get a hold of these headaches, throw them to the ground and trample.  Quite possibly at the expense of my brain?

My new medication, Topamax (aka Dopamax or Stupamax) doesn't mess around. It has caused some serious cognitive issues. When I read that particular side effect, I didn't think they really meant it.

I surely don't need any of the sort. I already struggle with what we are up against with Avi, and especially her recent trip back to the hospital. Sheesh...they weren't kidding, I've never been knocked off kilter by something like this before. I have to say. I've been kind of avoiding electronic devices, and even some conversations because of this stuff. It's some hard core, crazy stuff!

After two weeks, I was still getting migraines so I had to double down. It just so happens we were going snowboarding the next day. I'm telling you, I took a double dose of dumb and hit the mountain. Bad idea. After the first couple runs...I told Dave, "I have to be careful! I'm a hazard to myself and all men, women and children!"

I might soon be having to up my dose again and truly, I'm scared! I have lost words, have a hard time concentrating, following conversations, recipes, and spelling, oh my! I have butchered the spelling of simple words to the point where spell check tosses its hands up and hasn't got a clue as to how to help me. I'm serious. Doesn't it sound fun? Would you like some too?

Anyway, it's been a challenge, and you're probably wondering why I haven't thrown in the towel on this one. I have been battling these headaches for 23 years. I have been on every type of medication all the way until these injections. I am tired of driving between 1-3 shots into my arm a headache. I have given up and taken up coffee, alcohol, food journaling, exercise, healthy food, acupuncture, etc. I am on my 3rd daily medication. This is the one (after the neurologist at the headache class reviewed my entire history) suggested I really try. I have done extensive research and from what I've seen, once you find the right dose...hopefully, it will work wonders.

Supposedly, all these nasty side effects even out. I sure hope they do. These posts take about 10 times longer for me to write ; / Oh I forgot...another weird side effect is - I'm always chilled to the bone. You can usually always find me in a tank top and flip flops all year long. Now, I am freezing cold, or talking about how freezing cold I am. It's so weird!!

So, long story short. When you see words you don't understand, or sentences that don't make sense, or a funny looking pie with weird ingredients in it, or if I didn't understand what you said and stare at you blankly, or if I'm bundled up in a picture, but you thought I lived in a hellaciously hot place...you'll understand.

I'm on some crazy drug!

Constant

1. not changing or varying; invariable.

2. continuing without pause or letup; unceasing.

3. regularly recurrent; continual; persistent.

4. faithful; unswerving in love, devotion, etc.

5. steadfast; firm in mind or purpose; resolute.

From the moment this accident happened, we had found ourselves a constant. This man has been there for us like no other. He has stood by our side through some of the most difficult of times.

I vividly remember the police report had finally surfaced, and we were to go to the station to review all of the horrible details. We were finally going to find out what really happened. Can you imagine? I was literally shaking in my boots. I had already made myself sick, as I had envisioned the words I would be hearing within those pages. This man graciously took this terrible situation, and made it as bearable as possible. Throughout this feared meeting, I remember feeling as though he was carefully holding my heart in his hands. I will always remember that moment. It was clearly a time I felt the most gratitude for another human being.

This man has never wavered. He has been a supporter through and through. I think of him and begin to cry, as I'm confident he is one of the kindest souls I'll ever come into contact with throughout my lifetime. When I'm in his presence, I feel blessed to be. I know that sounds heavy, but true.

He's a faithful follower of Aviana's journey, and I will never forget the day I posted this. Within a few hours, the doorbell rang and there he was.  He was head to toe in his Roseville Police Department uniform, arms stretched out, saying, "I heard someone's giving out kisses here!" I was so happy to see him and laughing....oh my....was I laughing! How sweet was that? Absolutely something I will never forget.

He's not only there for the good, but also the bad. I was at an all time low with this last week in the hospital. My mom and I were walking down a long hallway in the PICU, and I looked up and saw that familiar uniform. All the way up there on the fourth floor, there he was. There he was. It was my understanding (I was pretty out of it when he was explaining) he had stopped by our house to check on Aviana from her previous surgery, collected our newspaper from the driveway, thought it odd for us not to be home, and immediately checked the blog. He saw the latest mishap and didn't miss a beat. He was there for us, like he always is.

This unbelievable man's name is Todd Lynn and over the past three years now, he appears at some of the highest highs, the lowest lows, and quite honestly, everything in between. I looked up the definition above in hopes of adding a few words, and couldn't stop myself as they all amply apply.

I just wonder how often it is that the investigator cares enough to stay by your side throughout the years? I have a feeling I know the answer to that question. Todd is a unique individual and I am so very thankful.

Oh come on Avi, help me out here...show Todd some love too! She's such a stinker sometimes : )

***

Todd ~

We appreciate you more than we could ever truly express. We thank you for always going out of your way to be there for us. You are heaven sent, and I mean that!

Now, I want to make you a pie : ) So, let me know when you're ready, and I'll go round up some rhubarb ; )

Our Love!

By the way...if you want to see this man on TV, check him and his family out in June when their episode of Yard Crashers airs on DIY Network ; )

Reoccurring Dream

You are across the street, I didn't know it.
You cross and stand straight in front of me.
I am in disbelief. 
For a moment I think my eyes are playing tricks on me, 
but before one more moment passes, 
I grab you and wrap my arms around you. 
I refuse to let you go. 
I am holding  you tight, somehow knowing this is just a fleeting moment in time.
I am begging you to stay and repeatedly telling you how much I miss you.
You say you have to leave, have to go back across the street. 
I can feel you don't want to either, but know you need to.
I want to look at you for all the remaining time we have left.
I stare deep into your soul and plead with my eyes alone.
I now notice your head is cut and bleeding. I ask you what happened and if you are okay? 
You say you are fine, but really have to go.
I am struggling to come to terms with never seeing you again. 
I pull you close, hugging you tight and telling you over and over how much I miss you.
I wake up to my own stark reality. 
I close my eyes immediately to feel you once again, 
As I know you are about to fade away from me and this may never happen again.
You stay close beside me as I carry through my day. No matter if I want to or not, 
I can't shake you from my every thought.
I close my eyes throughout the day and wish for one moment I could be with you again.
Be with you the way we used to be, combined with how we are today.

Madness & My Love

Some of our best friends came to visit. We met them through our blog. I have to say...they are some of the best to come out of something so bad.

I truly love these people.

Cameo and Norm.

Can you see Rainey in there? 

And, can you believe for a second that Cameo is not really a dog person?

She did say Rainey is a slice of heaven.

I think so too,

but more like the whole darn heaven and more ; )

Oh Beya, you are so sweet!

Valentina and Asa....

What can I say,

you both melt my heart.

Even you Valentina...

who won't look into my camera lens ; )

Guess what Valentina got from her Aunt Jen as a parting gift for the remainder of the 10-12 hour drive home....a xylophone!!!!

Beya made me do it!!!

I swear.

Anyway, I wanted to make them a pie....they decided on Chocolate Cream. They were on their way back up from Disneyland, but since Cameo and I were so excited over the fact that the new season of Mad Men had started, we over road the kiddie name.  

Roger ~ My favorite character

So, it was Cameo's great idea to take the names Stanley, Cooper, Draper, Price and rename our pie. 

May I introduce you to the ~

"Sticky, Chocolate, Drippy, Pie" 

Can you tell the gears shifted. I was making a Mickey Mouse head out of the pie and the kids gifts : )

New Blogger

I thought you were new and improved,

But you wrecked my last blog post with the same old you.

You're up to your same old tricks.

I see right through you.

Maybe you should check yourself into rehab?

Just a thought.

Redesign

I understand,

Kaiser's Women & Children's Center.

That means that women, and children go to that building for their health needs, right?

Right.

Taking care of both women's & children's bodies.

Supping them up, making them work properly again, shipping them home in good order.

But.

What about their precious little, or big should I say, hearts?

Did Kaiser think about their hearts?

Their working, beating, thinking, feeling, hearts?

They forgot.

They forgot about the hearts of these women.

They accidentally forgot about my heart.

Heart Hurt One

I remember after many months of trying to get pregnant, we finally decided to seek help.

I was filling out the paperwork at Kaiser....

Sample Question 1: What's your malfunction junction?

Sample Answer 1: I'm not quite sure. That's why I'm here.

Anyway, I began to see all of these pregnant women coming and going,

Laughing and smiling.

Innocently chatting with the front desk clerk.

Each time I carried my brown bag of sperm in, 


after yet another failed turkey baster attempt,

I had to listen to the same big bellied baby lady/receptionist exchange.

It usually went something like this ~

Receptionist: Oh hi Big Belly Baby Lady. How are you feeling today (ha ha ha)? Are you here for your 42 week appointment? (I don't know weeks because I've never been pregnant, so it's all the same and a foreign language to me.)

Big Belly Baby Lady: Why, yes I am (ha, ha, ha) I feel so good. My gosh! You know, we've already been thinking about baby #5, since it's so easy for us. We're thinking after this one's born, we're going to get pregnant again in April. What do you think?

Receptionist: You're right. It sure has been easy for you. I think that's wonderful. Have you been having anymore cravings lately?

Big Belly Baby Lady:  Well you know...I've been craving Western Bacon Cheeseburgers, Triple Bacon of course (get this) with the actual Oreo milkshake poured directly over the top of them. I then use both hands and just shovel it in. Then, I order another one! Ha, Ha, Ha. I have them all hours of the day! I just tell Tom, "hey Tom, I'm craving...you know what that means, now get, and he goes." Ha Ha Ha. Isn't that weird?!? Can you believe that? Eating for two. Eating for two.

Me: Gag!!!! Looking down at my latest brown bag. "Sheesh, I thought it was you that would make me gag, but listening to these tri-weekly interactions will do it every time!!" And by the way, your baby is tiny in comparison to you...may I remind you, it's not eating for two! Never eating for two!!

Redesign. 

I call for a redesign.

How about a little redesign?

How about putting all the pregnant chicks somewhere far, far away from the chicks who can't, and in my case, never did get pregnant?!?

What a brilliant idea ; )

Heart Hurt Two

After Aviana's accident she was at Sutter, and then U.C. Davis.

Both were fine.

We then were transferred to Kaiser.

Upon arrival, I was quickly reminded of the good ol' days.

As I was trying to make my way into the lobby to get a badge.

Yeah, a badge....security tighter than Shawshank.

I was blocked by a barrage of It's a Girl balloons.

I thought, WHAT THE???

There were a ton.

Mylar. Pink. White. Mylar. Pink. Pink. Mylar.

It took everything in my power to not swat them out of my face.

Tons of family and friends, giggling and laughing, smiles plastered across their faces.

"Oooohhh, Ahhhh....Don't you just love the name??? I just love the name."

"She's adorable! Isn't she just adorable? Oh you haven't seen her yet? Well, she's adorable."

"Did I say adorable? Because she's adorable. Adorable. Adorable." 


"Adorable. Adorably. Adorable. Hee."

Good times.

As I stuffed myself into the elevator with this jolly crowd, I thought...

My kid just got hit by a car. 


She's fighting for her life.

We aren't sure if she's going to live or die.

She just had the most horrific transfer from UC Davis.

She's "storming" and it's the worst site my eyes have ever seen.

And wouldn't you know it,

All thanks to another of Kaiser's well thought out designs,

The whole time I'm here...

Labor and Delivery is the floor below the PICU.

Yep. We all ride up together.

Some elated.

Some distraught.

All together.

The elevator doors slide open.

Some step out with balloons, smiles, happiness and bliss.

Arms filled with baskets, stuffed animals, and soft blankets.

Elevator doors close.

We stay.

Elevator doors open again.

The rest of us step out; faint, gaunt, pale.

With tear stained faces, we hold each other tight.

We carry with us hollowed and heavy hearts.

Cancer, Traumatic Brain Injury, Near Drowns, & Car Accident.

These are the types of things the PICU has waiting to welcome us.

Thank you Kaiser.

Thank you for the extra squeeze on the already aching,

No, I'm sorry...

Already trampled upon, heart.

Each time I want a little snack,

I must venture through the sea of ~

It's a BOY.

It's a GIRL,

Mayhem.

What about when your kid gets hit by a car?

What then?

It's bothersome because it affects the simplest of tasks.

Every time I get a thirsty,

I get caught in the wave of balloons, and banners,

The euphoric joy of the newest baby's arrival, or the first trip home.

I'm not mean.

I'm not a mosquito.

I do not wish to suck the joy out of others.

I just hurt on so many levels.

But you know what?

When I really think about it.

It's in my face, all the time.

Everywhere I look.

There it is.


But, definitely not to this degree.

I suppose at Kaiser,

It shows itself when we are at our most vulnerable,

And to a direct and an exact contrast.

It shows itself when we are staring straight into the eyes of life versus death.

I'm not saying bad things don't happen in Labor and Delivery.

I'm not naive, I know they do.


And boy am I sorry they do!!!!!!!

I'm just saying what I have seen time, and again.

The direct comparison again hurt my heart on our most recent trip back to Kaiser.

I know it's not intentional,

But I do think something needs to be done.

I'm not asking for a separate building,

But how about a separate elevator,

Or hallway,

Or entrance.

We never ran into this problem at UC Davis,

Or Sutter.

It makes me wonder.

At these other hospitals,

Are not only our bodies taken into consideration,

But also our very fragile hearts too?

Hospital Hair

It seemed with every passing day, Aviana was sporting a new do. Some of these styles would appear out of thin air and without warning.

I felt the need to document.

Please don't tell her.

The Medusa

Side Wavy Waves

Dreadlocks, What a Shock

Avi honey, who introduced you to the eighties without me?

Why are you looking at Nana?

Ok, it was Nana. 

MOM!! That was for me to do!!

High Pony

Dave is such a brat! I was so tired and really wanted to go take break. We were sitting about 5 feet from each other, and this picture and message came across my phone...

"That's the face of, 'you really want to leave me by myself'?"

Needless to say, we didn't leave until she fell asleep.

Say You Love Me

❤  I feel your love. I thank you  ❤

***

A lighter note for now. 

After our past weeks, we decided P.F. Changs sounded like the perfect place for Easter dinner. 

Doesn't she look like she's either nursing or sucking her thumb? I swear she is doing neither.

Note how peaceful she looks in my mom's arms.

Please note how peaceful she always is with my Uncle Roger.

Gary was going to take a picture of us together and he made some reference to Aviana flipping him the bird. This is a running joke in our family. We always say it will surely be one of the very first things she will do to him ; )

We decided to help her along, but I don't think she appreciated it.

Nope. Definitely not.

Great, we pissed her off for our pictures together.

So, the following is a series called ~ Does Aviana like her Mommy?

Her outfit was so cute, I wanted to try and get a picture with her before we went to dinner.

She wasn't having it.

Come on baby, work with me!!  How about if I help to hold your head up?

Avi, what's wrong? Are you mad at me? Did you want to wear jeans? Your hair down? What's wrong? 

Oh, you don't like my hair and outfit. 

I see. 

So, I thought we'd give it a try after dinner, outside and in a totally different location. 

Nope.

Do you see how restless she is in my arms?

Avi, let's have a talk. 

What's up girl?

Was it the obscene gestures at Chang's?

I'm sorry.

I know you're only 5.

You're right, that was inappropriate to flip Papa the double bird.

You want Nana,

Or Uncle Roger.

Okay...

I still love you.

I'll still take someone out for you ; )

Just Got Back From Hell

My mind has been clouded lately. I've been having great difficulty pushing various thoughts together in order to make cohesive sentences. For this reason, the computer's no place for me to be!

My new headache medication, coupled with what we just experienced with Aviana has caused me a great deal of...I don't even know the word I'm looking for right now. I have just plainly been out of sorts.

I will try my best to tell you what happened while in the hospital though, but truthfully - it's all kind of a blur. A haze I wish to never revisit once this is out.

After we found that Aviana's colon was perforated, we headed straight to her doctor's office. We discussed her liver biopsy, or lack thereof. And what we found was that due to her elevated numbers she either has a fatty liver, or a metabolic disorder. With either one, we wouldn't be able to treat her. If Aviana has a fatty liver, she would be in need of a liver transplant between about the ages of 10-20. Because of her brain injury, she would be unable to receive one.

Let all that simmer for a little while. But not too long, because there's more Hodder family.

Now hurry, no time to waste, let's move right on to her screwed up biopsy and perforated colon. We did a few different x-rays and there was too much, what they call, free space, so they recommended we immediately admit her to the hospital and start her on antibiotics.

Here is the terribly, heart wrenching part of having a severely brain injured child. The part no one wants to talk about. The part no one should have to talk about. The part we had to talk about. Sadly, and with the heaviest of heart, Dave and I were forced to look at each other, while holding our little girl and ask, "Do we want to put her through another surgery? Do we want to make her stay in the hospital for a week? Should we allow her to be sliced and diced, poked and prodded, slashed and gashed opened again? Is this the right thing to do to her? How much is too much? Where do we draw the line? When is the right time to wave the white flag? If she could talk, what would she say? What does she want us to do for her?" As you might imagine, our hearts were shattered into a million little pieces.

By this time, my Mom and Gary had arrived. I do believe many years were literally stripped away from each of our lives. We were unsure if these days would be some of our last with our girl. How would we ever really live without our Aviana. What would we do without her? Who would we be? How could we live without ever seeing those big, beautiful eyes again? We cried and cried and held her tight. We were beyond distraught, as the future was full of uncertainty.

We called a family meeting with all of Aviana's doctors.  Family meetings are surreal. I can't describe them any other way. Little lives hang in the balance. All I could think of was, we are too young for this! Who are we to be making these kinds of decisions for another? Who are we to decide what is best? Who are we to say what the makings are for a quality life? Who are we to decide if Aviana wants to go through another surgery? Who are we to decide if she should deteriorate to the point of death, or if she should stop now? Who are we??????

All I could think about was all of the kids who were out running and jumping and playing and enjoying their day. All I could think of was my kid screaming and crying out in pain, because the doctor accidentally went straight through her liver and clipped her colon. I wanted to scream! I wanted to kick something and someone for all we had been through, and all we were continuing to go through. When the hell is enough, enough?!? I wanted to hit something for the fact that our girl is sadly a series of unfortunate events.

We were told that had we not done the surgery and antibiotics, Aviana's death would have been hellacious. They said it would have been like burning her at the stake. They said even with all the drugs in the world, she would have suffered greatly. Our minds were made up. Of course we would never want any sort of pain for her. But of course, we are tarnished. Tarnished by real life. Marred by reality. Naive no more. We couldn't help but question, was the doctor just trying to cover his ass? Cover his mistake? We asked. They said no. Of course they said no. We will never know, but we would never take that chance with our girl.

I was/am so angry that we had/and will continue to have to make this types of decisions with every step of Aviana's life. It just doesn't seem right.

Anyway, we hugged our girl extra tight as we, once again, kissed her goodbye. We had no idea what that day had in store for us when we woke up. We knew very well that any day could turn on a dime, but we sure didn't expect that one to.

I didn't know how scarred I was from when Aviana was in the hospital, until I returned for that week. I was like a zombie. Going through the motions. I was so sad. Seeing her little body all torn up just about put me internally over the edge. Every blood draw made me want to jump out of my skin and wring some necks. But all I did was hold her tight, and smile graciously at the phlebotomist. Forgive me for saying this, but it's the only way I can best describe what my sad eyes saw -  by the end of the week, our Aviana's arms looked like those of a heroin addict : (

I need to move on from this particular post for now, but for some reason, I want you to know what it is I am talking about. These pictures don't do any justice as to how I felt, or how I feel now when I look at her healing body, or her scars, or just her. Of course I will never be able to explain, but for some reason, some part of me needs to put these pictures out there as part of my healing process.

Too small of a girl in too big of a hospital bed.

Drain going from her brain and out her head. 

I'll write a whole other post about that tube later.

Every one of those dots was from a blood draw, and this was her left arm alone.

Makes me cry.

I'll tell you about this picture sometime, but this was right after one of the most traumatic experiences of my life. A moment etched in my brain for eternity. My friend Jen and I had just calmed her down and cleaned her and her bed all up. She was looking out the window, and to me, wanting to be anywhere but there....me too baby, me too.

Hard to see in her head of hair, but there is a little area of stitches in the top section and then a larger row toward the bottom left of the picture.

You can see the bottom left ones better in this picture. 

These pictures don't even include the whole row of stitches from the front of her head, from the initial surgery on her head ; (

They went in through her belly button and, then she has these two other areas too. The other scars you see are from her g-tube removal and her shunt surgery.  There is a little dot in the top left of the picture by her arm. That is from the failed liver biopsy. That freakin' biopsy caused so much pain and heartache. 

I can't stand looking at all of these. They are reminders (as if looking at her is not) of all of the pure hell she/we has been through.

From the IVs.

Blood Draw or IV ~ I can't remember.

IV.

I don't have only terrible pictures from the hospital, I will post some others, but for now...these are the ones I needed to include.

I've been ok, but there have been times over the past few weeks when I have been scared, mad, sad, numb, tired, upset, pissed off at the world, and just plain sick of living this reality.

Thank you for being there for me, for us.