The Door

Some days,

I wake up in the morning,

Walk down the hall,

Loop around a few times,

And then,

I just stare at her closed bedroom door.

The truth is...

I'm exhausted.

I'm not quite ready to start again.

An accumulation of tired,

All at once.

The...

Days,

Weeks,

Months,

And years of this...

It's a worn which spans

Over the countless moments

Of us changing,

And her not.

Coffee!

That's it!

I'll make myself a cup,

And then,

I'll loop around again.

Groundhog Day can wait,

As a cup of Cinnamon Pastry

Makes everything right in the world.

The last drop comes too soon though,

And the door remains.

Unchanged.

Today is one of those days.

Love always,

But this sort of limbo life,

And the energy I can put forth,

Is stagnant.

She doesn't deserve stagnant,

So I go in,

And do what I do -

With excitement...

"Good Morning Sweetheart..."

"How was your night?"

"You look beautiful!"

"What should we do today?"

"How about this?"

"Does that sound good?"

And we're off...

But the truth is,

Inside,

On this day,

I'm feeling compounded.

Lucky for me,

I know...

This too shall pass.

Thankfully,

It always does.

So You Wanna Be a Cowgirl...

Aviana started Ride to Walk yesterday. She loved animals before, so I figured this was the best way to get  her out and closely involved with some awfully beautiful creatures! 

Doesn't her horse just take your breath away? 

His name is Ranger.

Ready to Ride

The paparazzi runs rampant in this place ; )

This one was so cute, I told her she could stay...

Avkin... ❤

Oh the tears as they rode away...

They stretched her all out : )

Towards the end, she fell asleep. She did this when we started her in school too. They told us at The Institute, when brain injured kids get overstimulated they tend to shut down or tune out, but once they become comfortable, they will tune in. We notice Aviana's way of tuning out is to just fall asleep.

I'm sure as with school, after a few weeks, she'll stay awake the whole session : ) 

Out...

Sweetie Pie.

A Girl and Her Horse

Setting off for the day, I just never know. Simple errands involving check marks off my mental list. Sometimes, somewhere in there, lifelong impressions are left. Happy is the heart, which experiences this kind of person; this sort of interaction.

Yesterday, Aviana and I were bouncing from here to there. Christensen's Saddle & Feed was next up. There, we would have her precious, little head fit for a helmet, as today we start with the horses. Aviana's hair was up like this...

so I needed to take it down in order for the very nice woman to be able to first get to her head. Now you all know what lies beneath, but this unsuspecting woman had no idea. 

Poor Avi is at the mercy of her dad's antics, and has no say. One night before a bath I hear, 

"Hey hon, come here," and walked in to this...

He said, "Look, it's Aviana Ross!"

Two nights ago, right before a bath he was texting my mom and uncle this next picture.

I won't tell you his caption.

Anyway, this is more of what she looked like at the store, but with a little more volume. More on the side of what you're used to...

The woman could not believe how much hair she has. I explained that we had even cut about 5 inches off some months prior. She was amazed! She looked at my hair and then inquired about her dad's hair. I explained that I didn't know as we had adopted her from Guatemala. 

She let that simmer for a second, and then expressed her admiration as this all must be quite an undertaking. I explained that Aviana was once a well child and briefly told her what happened. She had to blink back the tears. She was really empathetic.

She soon went back to get another helmet and I walked over to look at the shoes. I found the cutest pair of cowboy boots and wanted to get them for Aviana. They were absolutely adorable. I could visualize our girl on the horse with these green and brown beauties. With them in hand, I asked the lady about them. I then ran over to Aviana, showed them to her and asked her if she liked them. I excitedly held them up to her foot. I was picturing them with her cute jeans, shirt, and on the horse. 

But then, the hot sting of reality. I got lost in the moment. It happens. Practicality pulled. Brain injury rules. The former life is lost, and like a slingshot, I'm flung back into the realm of the brain injured.

The woman was on a ladder in the back, helping me, and I had to stop her. I explained I wasn't able to get her the boots. I let the moment get the best of me. The truth is, her feet are turning inward and I wouldn't be able to get them into a cowboy boot. I smiled and apologized.

We carried on. We looked at all the other cute stuff. Socks, stickers, and stuffed animals. The woman was asking if Aviana would want this, or like that. Finally, she said she wanted to buy Aviana a little horse purse. She tore the price tag off, walked over to Aviana and lovingly talked to her and rested it on her when she realized she couldn't take it. 

I melted, for so many reasons. The kindness - once again - of some people. For how Aviana brings these people into our life. For this woman to actually see Aviana. For her to care for Aviana, and us. For our two worlds to come together, on this day. For her genuine love.

As all these thoughts were swirling my mind. I was doing my best to hold it together. She rang me up, and then I asked if I could giver her a hug. We met halfway around the counter. I thanked and told her how much I appreciated her. Guess what...yep, I started to cry. She did too.

It's people like her that help pull me along this path. 

When you have a girl like Aviana, people tend to look the other way. I know the majority care, and it's mostly out of discomfort. I never fault them, but the truth is - when people look right through her, for whatever reason, the hurt is all the same. So when people actually see her, and love her, my heart...I have no words. 

Some people are placed into your world. Yesterday was one such day; one such interaction. Every time I look at that little horse I will remember that woman, but most of all - I will remember all of the kindness and love she showed us.

Some Things Never Change

When our two worlds, our two girls, collide - an indescribable feeling always arrives. 

Aviana used to love clothes. She especially used to love trying them on. Every time we went to the mall, she would attempt to make it an all day event. We used to pick out a number of things for her, and she would want to stay in the dressing room and try every last piece on her tiny little body. 

She would spin, grin and twirl as if she were the only one in the mirror, more like...in the world. And I, well I would just sit on the sidelines and admire. She especially loved to look at her booty! Towards the end of each outfit, she would turn to me with a cute, little knowing smile and pause. I took my cue, "Yes baby, you look adorable!" Her consensus was always the same....every single outfit looked perfect on her...even if it was a size too big or small. Finally though, the clothes ran out and we had to go, but she never wanted to. That's the breaks girl, you can't live in a dressing room.

Some things never change. In her heart, she still loves clothes. Every time I buy her new outfits, her eyes light up and she carefully inspects them. While we're out shopping, I show her skirts, shirts, dresses, and then...onto her lap they go. I imagine it might be amusing to the people who watch. They must hear me talking, to what appears myself if they don't see her, "Honey, what do you think about this color? How about this one? No, you don't like that. Come on...that's crazy, Labor Day rules don't really apply! You've been reading too many magazines. Put the People down, and tell me what you think about this dress?" In all seriousness, I watch her eyes and her expression. Sometimes I can tell, other times - I just have to guess. All my chatter while this speechless, cutie pie rolls around with stacks of clothes toppling higher and higher. 

I'm grateful for any little thing that sparks those sweet eyes and that beautiful face. God...am I grateful! For those are the very things that carry me through - 

moment by moment, breath by breath.

I was without her this particular day, but apparently I struck it just right in her eyes. 

The pictures are blurry, but I just love this one. 

Surveying the goods.

When we put the skirt on her lap, she looked down at it : ) 

Hmmm...which outfit should I wear first?

Daddy may be asleep, but I'm still thinking about what I'm going to look like in my new clothes this week : )

Yay, The Lights Still Work!!

As we continued along, we knew we had to do something. Have you ever had something go down the wrong pipe and cough? Your eyes water and it just feels kind of awful. Well, this is what Aviana was experiencing. I felt like this was happening to me more than normal, so I would know exactly what was happening to her and feel the urgency.

Often times, I have to admit...I would start crying. It was an insult to injury moment. Why? Because eating is a basic function of life. Eating - something she loved. Eating - something she couldn't successfully do anymore. Poor eating = even poorer quality of life.

To the layperson, they might just simply look on and say, "hey, that child isn't eating well...just pop a tube back in her" and call it a day. Again, our shoes are not anyone else's, and while yes of course part of us wanted to do that, no decision is ever that simple.

In the beginning a tube wasn't an option for us (until UCD told us to give her a chance), but again - the things we have gotten used to...we must always take a step back and question ourselves once again. As I have said multiple times on here...for us - her quality of life is a key component. Is going back to a tube part of a quality life? We were between a rock and a hard place - in so many ways.

1. She was eating her food by mouth and tasting all that we were making, but she was coughing and getting tired of eating.

2. She often times, doesn't like to open her mouth.

3. Feeding was taking anywhere from 30 minutes to 1 hour, and often times could only be done by certain people...mostly Dave or myself.

4. She would be going through another surgery, and as part of keeping her comfortable, we're trying to avoid surgeries.

5. Guess who they wanted to perform the surgery? Yes, that doctor. I would never have let that happen, but that office would have been involved, and I would have had to come face to face. Talk about emotions in motion.

6. We've had the tube before and while it's not that bad, we just didn't want for her, or us to have it again...that is - if we could figure out a way to avoid it. In our experience, as careful as we were, they leak, get clogged, the stoma site was a little interesting, and the durable medical equipment department at Kaiser was no picnic.

No matter all these things, because she was struggling to eat, we realized she shouldn't have to - and neither should we, or anyone else who fed her. There had to be a better way!

In the meantime, we decided to have my cousin's daughter start watching Aviana a little bit here and there so we could go to dinner, etc. We could only go between meals though, as we didn't think it fair to either of them to have Sydney feed Aviana.

Thankfully, a lightbulb went off over Dave's head one night. He looked at me and said, "What do you think if we blend up Aviana's food like we used to for tube feedings and have her drink it through a sippy cup?" He went on to say that it would most likely stop Aviana from coughing. Sydney would also then be able to feed Aviana and we would be able to stay out longer. I was shocked! A tube feeding through her mouth?!? What?!? Why had we never thought of this before?!? It was absolutely brilliant! Would it work? It could solve every single one of our problems.

1. She would still be tasting the food through her mouth, but she wouldn't cough!

2. She would probably open her mouth!

3. The feeding time would be a breeze!

4. She wouldn't need another surgery!

5. There wouldn't be any worry of who's doing what!

6. There wouldn't be any tube to worry about! No clogs, leaks, DME, or stoma site to worry about!

* It would add some quality to her life, because she wouldn't be coughing - yet it would at the very same time take some away, as she would be drinking her food : /

We dusted off the old Vitamix and got back to blending! We were excited to see if all this would work for the comfort and ease of everyone involved!

Avi sweetheart...would you like some liquid gold? 

And the verdict is...Avi sucks each meal down in less than 5 minutes! And she doesn't cough. And everyone can feed her with ease now! And, everyone seems much happier about the feeding situation!

Actually, I shouldn't say everyone. There's one certain little pup that's not too happy about the new feeding arrangement. She's no longer in demand. Her 'clean up crew' services are no longer in dire need. I know she'll come around though...she's highly adaptable. I've upped her treats : )

***

We can't believe this didn't dawn on us sooner, but at the same time - I'm just so happy Dave thought this up. 

When I really think about it...it all makes perfect sense to me. It's a strange concept when you're on a full blown mission of recovery and then have to change gears, and scale back on everything! It's almost like you are in reverse, yet moving forward. I tried to wrap my brain around what I just wrote. So yes, it takes time. There's so much that goes into every single solitary decision involving Aviana and her care. It's like cities built upon other cities; so to understand - one would have had to walk all her streets. Isn't that what all of us are like? I have a feeling : ) 

The Food Chain

In December of 2009, we visited The Institute for the very first time. On our first break, we cornered one of the doctors and briefly explained Aviana's accident and how she had just failed her swallow study. We asked him how we should proceed? He quite simply said, "you feed her. If she doesn't use it, she'll lose it." He told us to start off slow and build up. And so we did, all the way until we got her feeding tube out 2 years ago this August.

We started to chop her food up more coarsely, to see if she could handle it. At first she was getting better and better. But then slowly, she began to regress, as with all of her therapy. The little, tiny bit she had gained, she had lost. She always got tired and stopped. As with feeding, she did the same. At the time, we were with her amazing doctor at Kaiser. He was working with us all the way through: with her liver, her feeding, with everything. He was talking with the nutritionist, the feeding specialists, consulting with many in an effort to help us.

At this point, we had also very much so seen the writing on the wall, and realized that Aviana was not making any strides on the program she was on and had stopped. We had very much so accepted our reality, and even enrolled her in school. We were making changes in that general direction, both mentally and physically. But prior to the accident, food was Aviana's number one thing in life. Anyone who knew her, knew the girl loved to eat, and eat, and eat. She loved everything and anything, just give it to her! So food was the one thing we wanted to preserve. In a world full of loss, we wanted for her to be able to taste her food, if we could.

As you all know though, we had problems feeding Aviana. She didn't like to open her mouth all the time, which poses a problem for eating, right!

Her best doctor was bound and determined to help us. He explained how this amazing feeding therapist (outside of Kaiser) would come to our house and perform all these assessments. They would watch me feed her, they would analyze over the sessions, etc. They would come up with a plan. Together, we would figure this out, because he and I agreed, it had nothing to do with her brain injury and everything to do with her behavior. She was exercising her Meekie muscle of control. Everything was going to be put into motion. I was so excited!

Well, along comes the botched liver biopsy, and guess who gets sold down the river...exceptional feeding program and all! US! He pawned us off to a Kaiser pediatric psychologist?!? In email form and all. I was furious. I shot back an email, and he made up some lame excuse. Stick a fork in me, I was d-o-n-e!

I later talked to the psychologist and very respectfully asked if he'd ever worked with a brain injured child like Aviana before, but furthermore - one with these sorts of feeding issues. I further explained that I didn't want to waste his time, or mine. He turned out to be one of the most amazing people I've ever talked to at Kaiser. He told me he had looked through our whole file before talking to me. He knew everything and had first apologized for our accident and all we had been through. He then asked how everyone was doing. He went on to say he had never seen parents go to such extremes for their child. He heard me out about all that was promised in regard to the feeding program, and then after the failed liver biopsy how I was automatically transferred to him. He said how sorry he was, and how he understood exactly what happened, "we were promised a Mercedes, and drove off in a Yugo!" He then said with all our knowledge, and all we had been through in the feeding department thus far, he did not believe he could be of any help to us and didn't want to waste any of my time.

I had a nice, long conversation with him...it was more like talking to a friend than anyone else. I so appreciated his compassion and honesty.

After I realized Kaiser would be of no service to us, I was at a loss. I soon turned to you for help in the feeding area. I tried everything you all told me. Some worked for a while, but as with everything...Aviana grows tired of the routine.

I have unintentionally gone on too long...I'll be back with Part 2 of this story : )