Sunday, January 29, 2012

Cone Heads Aren't Always Funny

Some things take me a while to process before I can write about them. Recently, there was one of these types of things going on.

A number of months ago, I started to notice Aviana's head was looking more cone like :o( At first, I just tilted my head in wonder, and carried on with the day. A few months later though, there was no denying, it was definitely getting worse.

As I've mentioned before, the physical manifestations hurt me the most. As her head was changing, I was already making my way through a sea of challenging days. Because she has an existing ten titanium plates, thirty-nine screws and tons of lumps, bumps and massive scars, we are very careful in styling her hair for the day. We drag the comb across her hair, rather than her head.

In doing and washing her hair, I could tell something terrible was happening. I asked Dave if he had noticed. He had, yet neither of us really wanted to truly investigate.

My uncle comes to visit and pattern every Thursday. A number of weeks ago, Roger was about to arrive. I could no longer ignore the truth that lie beneath Aviana's beautiful head of hair. The strength in examining came from knowing my uncle would soon be there to catch my fall, as he so often does.

I felt the area of concern, and honestly ~ there wasn't a bucket big enough to catch the amount of tears which followed. The area was much worse than what I had prepared myself for. She has a deep dent in her head. You guys...a portion of her head has caved in on us : ( As if that weren't bad enough, it was obvious by some super sharp edges, that one of her many plates is about to come through.

I immediately e-mailed her neurologist. He responded, and wanted me to bring her in. The day of the appointment, I repeated to myself - whatever happened, has happened, and at this point there's nothing I can do about it. What's done is done. I stayed calm throughout the appointment, even though, once again, the words falling from his mouth were unintentionally shredding my heart. At times like this, I wish I were deaf, but because I'm not, I have to endure words like these: brain dying, her pressure's not good due to the previous surgeries on her head, her shunt is contributing to her pressure problems, her bone is rescinding, one of her plates is about to come through, this only happens to a very small percentage of children like Aviana, and so on.

At first, he didn't seem to have an urgency about her situation, but after he further felt around, and discovered her head was giving way, he ordered a CT Scan. His final thoughts were - we might very well be in need of surgery within a month's time. The surgery would involve going back into our baby's head. He will either remove her existing bone and put a larger titanium plate over the questionable area, or (depending on the quality of the bone) may have to remove it altogether, and place the plate over. He also needs to remove the plate that is about to come through. Yuck! Sucks!

In order to care for Aviana, we are all forced to be robotic in nature, to a certain degree. We must simply go through the motions, emotionless. For this is one of the only ways to best survive a life like this. If it weren't for this particular defense mechanism, we would all remain a soaking wet, puddle of tears. At these appointments, I listen intently, ask my questions, and keep my emotions switched in the off position. I process exactly what he is saying, and move along as quickly as possible. It is a harsh reality to have to go through life wearing a veil of numbness. This protective covering is the only way for us to keep wading through though. While begrudging this piece of armor, I am at the same time, so thankful for it.

Anyways, I took Aviana down for her CT Scan right away. I handle all of Aviana's appointments, as Dave is at work and I can get through. As the night before the results arrived, I realized I just wasn't up for listening to more of her neurologist's painful words. Another discussion about her sinking head, in under a week, was just too much! This time, that's where I had to draw the line. I asked Dave if he could take the scheduled phone call, and he agreed.

The end results were ~ he wants to see her in a month to compare her CT Scan with her actual head again. We will be taking her in for surgery, but he wants to do everything at once. At this point, he is unsure of exactly when the procedure will take place.

The thought of her being wheeled back, and again going under the knife makes me sick. I am thankful though, that the bridge to be crossed is off in the slight distance, rather than just steps away. We welcome not thinking about it until then : )

Saturday, January 28, 2012

I Love You - I Miss You

I remember I was busy cleaning my dad's house, 
and I rounded the corner to this.

My gosh. Words can't even describe...

Friday, January 27, 2012

Do it to it

The official list has been renamed. It is no longer The Bucket List and is now called the Do It to It list. My dad and I were talking one day recently, and this is the turn the conversation took....

Dad: I want to go to Nashville.

Me: Oh my gosh Dad!! I want to go to Nashville too!

Dad: We should do it.

Me: Are you being serious?

Dad: Yeah, let's go.

Me: Alright, let's book it!

One of my dreams has been to go to the Gary Allan Fan Club Party in Nashville. Since my dad likes him too, and went to the show in September with us, I didn't think he would mind going at that particular time.

He was all for going at that time, just as long as there were sure to be fireflies. My dad is absolutely fascinated with them and he is so excited to have me see them, as I have never in my life : )

So...on January 11th at 11am CST I was on and buying a ticket for each of us ; ) I am so excited! Gary Allan also opened a clothing store in Nashville called The Label. We'll have to check it out as well. My dad is a fan of Elvis, so we also decided to take a drive over to Graceland.

I can't wait for this trip! It will be so nice to spend time with my dad, see Gary Allan, meet him again (two times in one year!), cruise around Tennessee and also go to Graceland. 


Oh chinese food restaurant on the corner, how on earth did you know??

Gary ~

This soul needs some soothing.
I'm on my way.
See you soon.


Thank you to my awesome husband for knowing how much this is to me, and not even batting an eye!

Thank you for hanging back and taking care of our girls ; )

Thursday, January 26, 2012

Better Not Bitter

My nephew Ashton was born when I was 18. I have loved this kid for all of my life. He unfortunately has had a very trying life.  Not just one, but both of his parents are addicted and have been for the majority of his life.  He lived with his grandmother for most of his life, whom I must say, is one of the best human beings to ever walk the face of this earth. 

When he was 12, Dave and I made the decision to take him in. It was great for the first year and a half and then things became fairly difficult. After 2.5 years, we collectively decided to graciously part ways and he moved back to Tahoe. 

I have always respected Ashton, but it wasn't until I suffered my very own tragedy that my admiration was pushed into another realm.

I am his aunt. I have taught him numerous things about life, living, manners, everything, but by example, he has shown me the world. Although he has struggled much of his life, living on very little, and in small spaces, and most importantly without either parent present in his life ~ he is the definition of better not bitter.

Ashton never looks at what he didn't have, or what his parents didn't do for him. He looks at the positive and all the blessings in his life. He doesn't dwell or use excuses. One thing I really need to learn from him is how not to re-visit the past so much. For me it is a fine line of missing and honoring Aviana as she was, while still staying in the present moment. 

His heart is big. He radiates goodness. He is warm, loving, polite, positive and just plain good. I watch as he avoids the wrong, and carefully chooses the right path. 

Ashton made it on the Santa Barbara City College team last year, but has decided to instead fly to Portugal to pursue his dreams of professional soccer. He has been staying with us and will be until he leaves the country. He is an inspiration to me in so many ways, and I am forever grateful for all he continues to show me ~ to teach me.

This is a kid who has never been out of the country, and has also never lived on his own. He is so courageous to soon to be landing in a foreign country to follow his passion. Wow! I'm so impressed! Whether he makes it onto the team, or not, I have the highest admiration for him for trying. I am confident in the fact that he will succeed greatly in life.

Attitude is everything and he's got a great one, so I know he will go far.

I am going to miss him when he leaves, but will be cheering him on as he embarks on his journey.

He's going to kill me for putting these pictures up, but this was him right when he moved in with us.

Oh my...he's going to give me the business on this one : )

This is where his love of soccer began.

This picture makes me laugh.

These make me cry.

I love him. 

Here's the story. He was holding Aviana and I wanted to get a picture of them. I ran and grabbed my camera, got into position and told him to smile. He said, "Uhhh Jen...I feel something way warm, I think Avi just peed." I picked her up and his jeans and the couch were soaking wet. I had to get the picture so I asked him to sit still and put her back on his lap as I snapped a few. 

His face says it all : )

Monday, January 23, 2012

Wind of Change

I suppose I had to walk through the dark, to get to the light. Being enclosed in the pitch black, even if only for small bits of time, caused me to completely lose my way. Even in happy times with Aviana, there were always clouds looming overhead. I think there will always be some above, even on the sunniest of days, but hopefully nothing even close to the storm of this past year.

It took endless tears and never ending heartache, but I can safely say ~ you can now find me on the other side again. This isn't to say a slight crumble won't occur at the speak of a birthday party, or that I won't be brought down to my knees here and there, and over this or that. I will hurt for the rest of my days, no doubt about it. There will never be a time where I don't feel the sting of losing a child. But not only just losing a child, but also living the rest of my life with what happened staring right back at me. There is however a big difference now though. The valleys don't feel quite so low. Through them, I feel more level, more even. I now have the ability to pick myself up rather quickly.

I've been waiting quite some time to write about this. I suppose there's a part of me that believes in jinxing, and I sure didn't want this very important aspect to fall victim to that sort of trickery ; )

As I'm sure you could tell, I was falling all over myself last year. Slipping here, sliding there. Tripping on this, stumbling on that. Why? Well, the time I most feared ~ arrived.  Not only did it appear, but it materialized with what felt like a vengeance.

If my mixology skills are up to par, I will attempt to explain the drink I drank.

Built in a once large, warm hearted, glass. Fill partially, with the trauma of a major accident. Then, add large amounts of grieving the child we worked so hard to have, and then lost that day. Ferociously muddle in working your fingers to the bone. Next, forcibly infuse the drink with having to accept what is. While mixing all of the above, you may as well add a whole lot few squeezes of dealing with the wide range of others' guilt ridden emotions. Once the main ingredients are added, cover and shake vigorously. You want all the elements to be swirling in and around each other. Your goal is simple ~ to have not a clue as to where one begins or the other ends. A perfect miss mash of everything. Whatever you do, don’t forget to float the top with losing your best friend in the whole wide world. Now, here’s where the fun begins, light that baby up, watch it burn, and drink it down!

That my friends, was my signature "cocktail of death," with the added bonus of it not killing you! Sound like a great Friday night?!

Truth is, we were flying high on hope the first two years. Once we came to the point of having to accept what will be, I hit a wall. But, I not only hit it, I smashed into it with everything I've got! It's no secret that I carry with me a heavy load of grief. It truly has taken me some time to let much of it go. For whatever reason, I guess I wasn't opened to putting it down, that is until recently.

I can actually pinpoint the exact beginnings of change. It all started with Aviana's Elves. With your help, I slowly began to transform. As your momentum gained, mine did too. While helping others, you may, or may not have known you were throwing me the lifeline I so desperately needed. I grabbed on, and it was you who pulled me up and out of the depths I had become all too comfortable in. I thank you.

I feel a whole new energy field. A calm like I haven't experienced since the accident. A peace I never thought possible. Since the beginning of December, I have felt like a completely different person. With the help of some of my old roots (which I will talk about in the another post), I'm back. Most importantly, I am enjoying Aviana for who she is, and not for what she may, or may not ever be or do. That's what it's all about, and that is exactly what I couldn't peacefully come to terms with last year.

I know there will be difficult times ahead, and of course more tears shed, my gosh ~ how could there not be, but I am hoping and praying to stay clear and on this great course.

Friday, January 20, 2012

Everywhere We Looked

I have to say, the biggest downfall to the process of getting new carpet were all of the unexpected landmines. They were igniting everywhere. Just to name a few...

* Kama's fur all between our bed boards.

* Aviana's secret stash of toys.

* Kama's ashes.

* Zoe's fur on the top of our mattress.

* The tiny, little dress and shoes Aviana was wearing when we picked her up in Guatemala.

* Old pictures of her. Ones I hadn't seen in a lifetime.

* The pictures her foster family sent from Guatemala before we had ever met her.

* Aviana's old clothes from before the accident. As I folded them to pass along, I could actually see her smiling face in every outfit.

* The stacks upon stacks of well wishing cards, that I placed in one particular bag to read at a later date.

* Stacks of medical paperwork, all containing terrible words, descriptions and prognosis.

* Well wishes for us in regard to Kama, that I have yet to read as well.

* All my old scrapbooks of Aviana.

* All the shoes that she last wore, and never wore again.

* The Valentines her and I scrapbooked together for her pre-school classmates.

* Her referral pictures. The ones we would receive every month until we could bring her home.

* Her little arm floats she used to wear when my mom and Gary would take "our little fish" swimming.

* And so many more.

It was a trip down memory lane, to a life that seems so far in the distance.

We have a new life now, with new memories.

Words Can Never Say

So Fresh and So Clean Clean

We got new carpet the other day, and while it was a ton of work, it was so much fun!!  If ever you want to know where I am, you can find me rolling around on the ground, talking about how clean everything is, and how happy I am ; )

The crazy process!

We have finally decided to give the, "Every Avi Body Fluid Over and Over Again" couches away. Someone was not too keen on our idea and was standing her ground. I speak dog, at least I think I do, so if you are unsure of what she is saying, here it is ~ "these are perfectly good couches and all 49 pounds of me sure isn't going to let them go without a fight." I further explained to her that they are perfectly good couches, but not for us anymore. She knows they are going to a good family and found comfort in knowing maybe their dog can further love on them : )

Dave and I spent an hour and a half Sunday.

An hour and a half Monday.

And about three hours on Tuesday.

We finally got every carpeted surface free for them to install on Wednesday.

Rainey and Avi did help, but they also spent a good amount of time relaxing together.

We had a slumber party on Tuesday night. I don't have a picture of Avi, because I didn't want to bother her with my flash again, but she looked adorable. Rainey was unsure she was allowed on this lower bed. 

My friend Amy came over on Wednesday night to help us move the whole house back in place. It took the three of us about 5 hours to get it done. We were tired and slightly delirious once we finished.

That didn't stop us from making fools of ourselves by rolling all over the fresh, new carpet.


Yep. We were making new carpet snow angels, and such.

Delirious I tell you. We were creating a two person pyramid. It was a dud because Aviana was asleep, Rainey was not into playing pyramid and Dave was documenting the craziness.

I think we passed out soon after this picture!

Amy Girl ~ Thank you so much for your help. You are the girl who actually volunteers to re-load and clean a friend's whole house because you want to help and think it will be fun.

It was so fun!

Much love.
(cuz I'm part Rasta)

A Whole New Level

After the accident happened, we basically lived at the hospital. We were there constantly. One day though, we came in and this was what we found waiting for us....

I love it for so many reasons ~ because our friend Josie took the time, love and energy to create it, because every single word was spot on for our family, because I have a great love of Scrabble, the list goes on.

At the time of the accident, and for many months, years, after ~ everything was a blur. I was not sure if ever I shared this with you.

Thank you Josie. 

Thank you for taking a classic games to a whole new level!

Tuesday, January 17, 2012

That's What Friends Are For

In good times...

In bad times...

I'l be on your side forever more

That's what friends are for