Demise

Why might you ask was my past week so horrible? Well, it is because it was Aviana's birthday. That sentence does not sound right. It hurts me deeply to string those particular words together. They hurt me so much, that I could not function last week. I could not write last week. I could not speak last week. I could not stand to even be around myself this past week.

I have a hard time faking things, or acting as though something is not. I wear my emotions on my sleeve, and to conceal this truth, was just about impossible. There was only one person I was desperately trying to hide these feelings from, and that was Aviana. I don't mind telling all of you, my family, my friends, anyone, but keeping it from her was my greatest task.

Tears are spilling over as I write these words. She doesn't deserve this. She doesn't deserve for me to feel this way. She doesn't deserve what happened to her. She deserves for her birthday to be as it used to be. A day of love, laughter, friends, big smiles, and celebration.  A day that is all hers. A day she was born into this world by a loving mother, a world away. A day she had the honor of spending with her birth mother. This was a day her mother put her own feelings and emotions aside, and tried to do what was absolutely best for her sweet little Ana. Her mother knew once this precious day was over, she would be handing her very own little girl over....forever. August 16th is the day of Aviana, and nothing less.  For all of these reasons, I felt like the biggest piece of trash for letting any other reason but celebrating her, get in the way.

In taking care of Aviana, there is a switch that must be flipped into the 'off' position in order to see the things I must see, and do the things I must do. I am fully capable of flipping that switch when need be. I have become a master at knowing when it needs to be flipped in order to carry on, in order to accomplish the tasks at hand.

I try very hard to not put much emphasis on dates, and months, and so on. I feel they makes it that much harder. For me, if I just keep going, honor the day, but don't stay too long, it's easier. I'm then avoiding hopping from one unpleasantness to the next. I feel if I focus and dwell on each date, I'll look back and have wasted my entire year.

Aviana's birthday is the exception to this rule. Her day is, by far, the most difficult day of the entire year for me. With Aviana's birthday, there's no escape, no way to deflect the pain, and as for the damn switch... it's stuck in the 'on' position.  For that reason, I'm forced to sit in a pretty awful space.

I'm not only sad for understandable reasons, but am mostly sad for feeling that Aviana can see straight through me. I did really well on her actual birthday, but the day before and the day after were horrific. I could barely even look at her. I spent those days walking over to her, seeing her beautiful little being, thinking of her birthday, and then darting to the furthest room to cry. As hard as I tried, my actions were stuck on repeat.

You might question why I can't be happy about the simple fact that Avi's here. That she survived. That she's with us. For our family, it's not that simple. The answer goes back to the decision we made to let her live, instead of die. For us, it's about quality of life. And while we made the best decision at the time, and while we know there's no turning back and that she's here for a reason, to me, she doesn't have quality.  I imagine if you spent a day in our life, you might agree.

We had no idea what to do on her birthday. We tried to ask multiple times on the FC Board. She refused to answer. Because Dave knows how difficult this day is for me, he always takes the day off from work. We ended up taking Aviana to the Jelly Belly Factory. To be honest, it was obvious, she didn't care what we did.

This post is way long and heading in all different directions. I'm having a hard time explaining how I feel and what I am saying, isn't coming out, so I'm going to stop now.

My Uncle always brings the most beautiful cakes. I think Aviana's cake was the best of all ;o)

Yum! It was so good!

Rainey is showing exactly how I feel.

Pissed off!

She got a little bit better.

Never Say Never

In spite of having a really difficult past week, there were a couple bright spots. I am one proud momma when I tell you that on Thursday, Aviana had her feeding tube removed ;o) She has a Bard button instead of a Mickey, so we actually had to go in to have it taken out. 

While Aviana was in the hospital, the doctors' told us she would probably never eat by mouth again. It was a long time coming, but we hadn't used it for food in about 5-6 months, and for water in about 2-3 months. We felt really comfortable having it removed, and knew it was definitely time. We have worked extremely hard, so this one small thing feels like a huge victory for us!

We have The Institute to thank for our success. Without them, I can't even begin to think of if, and when the tube ever would have come out. 

Everything on this journey has a way of being bittersweet though, so in having Aviana's tube removed, we immediately lost all of our nursing hours. I understand, but do find it ironic because feeding her by mouth is a million times more challenging than feeding her by tube. 

We had to say goodbye to Lesya on Friday. We will miss her terribly, as she was one of the best nurses ever.

As we continue on, please keep us close in thought :o) 

Untitled

There is a blank page staring back at me....we all know this doesn't happen very often ;o) I haven't had much to say, and I haven't been much fun to be around this week. I also haven't had any desire to put my misery on display, as it felt like the same stuff...different day.

I think I am almost over it though, so I will be back really soon!

I did however miss you guys! Thank you for checking in on us ❤ I have never been away this long, and I have to admit, it's kind of strange. I suppose it's what I needed though ; )

Maybe I saved it all up, and will dish it all out this next week....

Uh oh.

You better run.

Take cover.

Just kidding.

Kind of.

It's a Choice, Right?

Realization

As of last month we have had her like this longer than like that.

He's Magical

While I went to counseling, my Uncle Roger took Aviana and Rainey to the park the other day. He showed me these pictures when I got home, and I couldn't believe my eyes. If I pulled this stunt on Aviana she would have been so mad at me. If I put her directly on the grass and on her stomach, she would have given me the business.

She is the perfect little angel for her Uncle Roger. He is a calming, and constant force in her life. When he holds her, she melts into him. He truly brings out the best in her...every time!

I can't get over how tall she is, and just imagine what she would be like running around at this height?

Asleep? Directly on the grass? Asleep...

It's a Small World

Through this blog, we have made some really close friends along the way. I'm sure you have heard me talk about my friend Ellen. Ironically, she lives right by The Institute. We see her every time we go, and I just love her. She is a constant source of love and support.

She and her family were coming to the west coast to visit some family, so they decided to spend a day with us. We planned to take them to Tahoe, as she and her daughter Emma had never been. We had the entire day planned out. We drove up yesterday, went to lunch on the west shore, carried on to the south shore, and took the gondola to the very top to overlook the entire lake. We then carried on to the east shore, and then to the north to have dinner with my dad.

The day was going perfectly as planned, but halfway up the gondola, I knew I was in trouble. As you all know, I love Tahoe. After I say this, Dave always follows with, "yeah, but Tahoe sure doesn't like you." He says this because majority of the time, I get a migraine.

Often times, I don't put 2 and 2 together, but suddenly I did when we were on our way up. I could feel a headache coming on. The highest point of the gondola is about 9,100 in elevation. It was so beautiful, but I paid dearly. After we left, I got one of the nastiest migraines of my entire life. The worst of it was, I forgot to bring my shots ;o( I laid down through dinner, and didn't know how I was going to survive the ride home. Yuck! We had to pull over onto the side of the road twice on the drive home, so I could have the pleasure of getting sick in front of our Philly friends ;o( Once we finally pulled into the driveway, I couldn't even say goodbye because I was sick again ;o( How embarrassing!

I felt awful on so many levels, but am so happy we had a great first half of the day!

The Long and Winding Road

I have lifted myself out of the 'woe is me' space, and am feeling much better. I am thankful it only lasted hours this time, and not days.

Thank you for journeying along with me. I know my path is ever turning. 

Why Stop Now?

I see people with no arms, but a healthy brain and I am jealous.

I see Gabby Gifford, and I want to cry.

I see special needs kids of all walks, and wish she could.

I see amputees with a prosthetic and I desire.

I see burn victims smile, and live, and I wish.

I see dead people, and I am envious.

I see people walk away from horrible accidents unscathed and I wonder.

I see people moving on, and I want.

I see healthy little Guatemalan kids all over, and I think.

I see a child reach their hand out for something, and I analyze.

I see Rainey move freely all about the house, and I hurt.

I am well aware the grass is always greener, and every situation is challenging, and some have it way worse, but what I just can't stop is the want. The want for what is not ours.

Somewhere Between

Having Aviana the way she is has a way of making me feel like she is not quite alive, and not quite dead. I know this sounds awful to someone who has never been in our shoes, or maybe even to people that are, but this is how I feel. These thoughts are very real, and are never far.

I feel we are living in the land of limbo, without end. It is a very unsettling feeling. I try to stay as positive about our situation as I can, but there are so many things that happen in one day's time that cause the thoughts to swirl. I just wonder what it must be like for the people who come visit us, or spend any length of time with us? I try and put myself in their position, and for me, I think it would be hard to be around us. Too much reality dwells within us, and around us.

I so admire all of you who reach out to us, and spend time with us, and send your love to us. The reason I have the utmost respect for all of you is because I was a former tragedy dodger. Not because I didn't care, but because I was scared. I felt saying almost nothing was better than saying something wrong. I respect people who puts themselves into our space. With every comment, card, or call, I know you have what many do not. I certainly didn't. And to those that never say a word to us, I completely understand, for that was me. I cared immensely, but just couldn't show my face very often.

It is extremely hard to live without end. I don't feel our sentence was ever ended and it just keeps running on and on and on. In every situation throughout my life, I have wanted some sort of closure. I have felt a sense of unrest in the areas where there was none.

I am happy with the progress Aviana has made, but today I am convinced that it is not enough. When I am in my own little bubble, I feel much better, but when I venture out and see how others live, laugh, love, joke, run, smile, eat normal food, enjoy, just are, my destructive thoughts rope me back in and chant, "this is not enough, not near enough, nor will it ever be!!"

I don't know how to wrap my head around this life. I try my damnedest, but I struggle with how to be okay with,

I think she's happy.

I think she thinks this.

I think she is crying because of that.

I think she is feeling this.

Maybe she's that.

She has her own way of enjoying.

She smiles with her eyes.

She is taking everything in in her own way.

She can't do anything, but she is enjoying watching everyone else.

Let me move her around the house a few more times so she can see different things.

And so many more.

Don't feel bad if you have said any of these things to us. We say them all out loud and to ourselves a million times a day. That's all we can do. That's all we can think. How else are we supposed to get through this horrific situation?

Days like today make me wonder what it's all about. Why were we chosen to live somewhere between life and death. I should more appropriately rephrase that, why were we chosen to live a few notches above death?

At the end of my days, I want answers! Does that sound too demanding? Well, I want them. I will live this life to the best of my ability, but in the end....I better be shaking my head in agreement as I look at the entire motion picture of my life!!

Hopefully I will be feeling better in the next few hours, but truthfully, these thoughts are the undertones of every step I take, and every move I make...