Thursday, October 31, 2013

Costume Change


We had ordered Aviana's costume earlier this month. It had arrived the day everything changed. I opened the box that day and felt such sadness in knowing I needed to send it back. 



In filling out the return form, I was going to spare both the person reading the form, as well as myself in the, 'reason for return' box. At the last minute, and based on the costume we chose for her this year - I changed my mind and wrote, 

"Our daughter is on Hospice and recently took an unexpected turn. She will no longer be needing her costume, because soon our girl will be flying with wings of her own!"



I felt much better as I sealed the box and sent it off.

Wednesday, October 30, 2013


My gosh…we are both grateful and humbled by every single word you wrote.

Thank you so very much.

❤ ❤ ❤

Saturday, October 26, 2013

She's Free




Aviana Reese Hodder

August 16, 2006 ~ October 26, 2013



For you, there'll be no more crying
For you, the sun will be shining
And I feel that when I'm with you
It's alright, I know it's right

To you, I'll give the world
To you, I'll never be cold
'Cause I feel that when I'm with you
It's alright, I know it's right

And the songbirds are singing
Like they know the score
And I love you, I love you, I love you
Like never before

~ Fleetwood Mac

Friday, October 25, 2013

Night Rider

When Aviana took a turn, everything changed. We took her out of school. Dave no longer went to work. We became somewhat stuck like glue. There were a couple days in the beginning where Aviana slept more often than not, but after that, she has been awake most all the time! She stays up until 11 or midnight. Often times, she is up early in the morning. So, we spend all of our time with her. I've written about most things we do. She has been so alert and attentive. Despite the obvious difficulty, it really has been nice. Lately, we've been taking her on walks, and up to the park as well.

For the first six days, I didn't leave the house once. Not because I couldn't, but because I just didn't want to. I wanted to be here every second, if ever she needed me. That's not to say we don't give her space though. We do.

One thing we learned early on is - she absolutely, positively doesn't like when we sleep with her. She doesn't mind if we lay with her at night before bed, or in the morning after she wakes up, but never sleeping with her. It's one of her rules...from the get go. I've got stories from before the accident that would make you laugh, and at the time, made us want to rip our hair out ; ) So...we make sure to let her sleep alone.

After six days, I felt it was time to give her more space, just in case. Even though I didn't want to, I forced myself out the door. Each time, I have this mantra on repeat, "it's about her, not you." You know you're in deep when you grab your brother, go to Target, walk around aimlessly and all you have to show for your trip is a box of Fruity Pebbles and Cookie Crisp. We're talking Target! That's it?! No tiny, little Halloween shirts, and matching leggings. No starry night skirts, perfect for school. I had to slam my eyes shut, just like I will forever.

I am a Night Rider. I go on Night Rides. I leave an hour, to an hour and a half before the stores close. I put my music on blast and crawl into the songs. I have gone three times in the last week, to give her time if she so desires. I walk the stores, for nothing. I talk to Adam, my right hand produce man. I tell him, "I swear, I will be so sad if she dies and I am sitting her at Whole Foods killing time." But the reality is, if that's what she wants, I will find peace in it. I will be fine.

I know the truth, and the truth is a slight slant on that old Stones song - you don't always get what you want, you get what you need. I know she will give me exactly what I need. Somehow, she always does.

You Might Think

Throughout the years following the accident, I contemplated Aviana's actual death many times. I've played the scenario over in my head. The ending I hoped for was always the same. Never wavering, unchanging.

When her time came, I prayed I would walk into her room and she would have gone peacefully in her sleep. If it should happen, this was my secret dream, one I began sharing with family and friends recently. I so desperately wanted this for her, for us. I thought it would be the best and easiest way. I thought it was all I could handle. It makes perfect sense for someone who was formally terrified of death.

Never wavering. Unchanging. That is, until three weeks ago. I thought, "no way, not ever! All these years, I was wrong." All I want...is for her to die in my arms. All I want is for her last breath to be with me, not in her room, by herself, alone. I want for her to be surrounded by Dave, Rainey and me. I want her to be with us.

But it's not about me. It's about Aviana, and we all know she has her own agenda, so we do our best to respect her ❤

Once again, just when I thought I knew...I really never do. That's what keeps this life interesting, right!

Thursday, October 24, 2013

Validation

As Aviana began refusing more meals, something else happened. She would pick and choose whom she needed to share her wishes with. It was incredible to see her in action. I told you about when my Mom and Gary came to visit and no matter what they did, she stared straight through them. I didn't tell you the details though. I had told my mom briefly about her refusing, but that night, Gary knew less. I am convinced that Aviana felt she needed to show them her lack of enthusiasm. She was completely fine before they arrived, and became totally despondent and detached the entire time they were over. Once they left, she was fine again. I was beside myself.

I know this girl like the back of my hand. I saw her behave like this many times, in regard to changes I needed to make as well. I know this may sound off the wall to some, some may completely understand what I'm talking about. 

At the time this was happening, I brought it up in one of our Hospice meetings. I then understood it to be a stage of the entire process. I thought it was going to linger and continue to worsen as time went on.

On a subconscious level at first, I began to mirror some of Aviana's actions. I realized I was actually detaching a little from her. It made me sad, but I couldn't help it. I suppose it was a defense mechanism or something of the sort?

An interesting thing happened though. After Aviana showed everyone her needs, and they were validated...the phase was instantly over and thankfully never returned. Once again, I mirrored Aviana and was right back by her side. It was an interesting, and necessary stage - I guess for both of us.  

Wednesday, October 23, 2013

Purpose

Throughout my life, as far back as I can remember, I've always loved a challenge. In every area, and arena. Since that day in Guatemala, the day Aviana and my eyes locked, she has been my biggest! If I think about it, I believe it started long before though. Maybe when we first realized we couldn't get pregnant. So really, she'd been a long time coming!

You know that square box you surround yourself in? The one in which you feel most comfortable? From the day I met Aviana, she took one look, asked what it was, shook her head as if to say, "no, that's not going to work!" and pushed me right outside it. Without warning - I was ejected! From then on - there we were - she and I, live without a net. I had never in my life been to such a place before. I was terrifiedShe terrified me. All one foot something of her...

Life came at me fast and furious. 

'Here's your daughter! The one you've been waiting for! The one you always wanted! Now go home and bond; even though she moves a mile a minute and won't let you hold her for more than a second. Oh and by the way, she's so independent, she won't want help with anything! Butshe's so incredibly cute, and will love you so much that you'll feel guilty as hell for not bonding with her. Good luck back in America, adios amiga!' Of course, no one said that to me, it's just what was constantly running through my crazy mind. 

That's okay, because this pint sized beauty taught me more about myself than I ever wanted to know at the time. She showed me sides I didn't even know existed. Apparently, I had some serious ugly that needed some prettying up in the kid department. She showed me who I did, and didn't want to be. I wasn't the most patient person before, and she slowly taught me, whether I liked it, or not. Together, just the two of us (along with a ton of help from Dave, her Nana and Papa) were slowly, but surely finding our way.

And just when I thought smoother waters might be ahead for us, the accident happened. I didn't know if I had it in me. I wasn't sure if Aviana and I had enough of a foundation built at that time. Everyone knows a house built on a rickety foundation will crumble. The accident was too much for me to comprehend, so I left it to God. I had to trust that He knew better, and would take care of us. Thankfully, He provided. Because as I sat bedside Aviana day and night in the hospital, something happened. The few remaining vacancies I had previously worried about, well...they were filled. I was more than ready to not only get, but rip, Aviana out of hospital by the time of her release. 

These years haven't been the easiest, and often times - far from it, but with love - all things are possible. I've been there when the love wasn't, and nothing comes easy. Everything feels like a struggle. 

Every single step with Aviana presents its own unique set of challenges, but with each also comes a whole new lesson set. In the very beginning I didn't understand, so I used to fear these types of situations. I began to realize - with Aviana, the road was going to be rough. It twists and turns. Sometimes I don't know if I'm coming or going. It's always wild, but the truth is - I never was the type to like a boring ride anyway. She always makes it worth my while. When we get to the end...we are always so happy to have made it!! We survived, yet again! We made it! We wipe our brow, high five each other and then...that's when the real work starts. The mind work, because our little tour guide doesn't stop at just the ride, oh no.

For those who are paying attention, her entire life has been given for the betterment of those around her. It's up to us if we chose to see, or not. She's here to teach us about what's most important. Kindness, Compassion, Love, Empathy, Courage, Spirituality, Resilience, Grace, The Human Spirit, Appreciation, Community, Good Will, Patience, Acceptance, Generosity, Death, the list goes on...

Oh Avi, I love you so...

Monday, October 21, 2013

Her Protector


When Aviana's in her room, just like Kama was...Rainey is her protector. 





























Saturday, October 19, 2013

Friday, October 18, 2013

In Times of Trouble...


Bring Out the Big Guns!


Our Home...Our Sanctuary

Our home is our sanctuary. It is so calm, peaceful and revolves completely around one...Aviana. We surround ourselves in her - all day, and night. Of course we cry, together and with her. But overall - we are together...always.

We spend our time... 

wrapped around each other 

reading together 

laying together under her twilight turtles

talking to her

listening to my meditation app ; )

watching Suits

sleeping

visiting

just overall loving 

It has been nice. Calm, peaceful, and challenging, but nice. 






We've been taking all of our pictures with our phones, and then today just realized we should have been taking all of these with our good camera : ( I charged it today...

Stinkin' junky pictures! Oh well...

You

Thank you for every word of every sentence. We've held each closer, than close ❤ You are all so unbelievable. We appreciate your love for us, and especially Aviana! Thank you to all who have been with us from the very beginning, and of course those who've joined in along the way. Thank you to all! Everyone's support has surely helped pull us along : )

Wednesday, October 16, 2013

It's hard to imagine, the last time Aviana really ate was Thursday. It's hard to imagine, on Saturday we were at the Pumpkin Patch feeding the goats and riding the train through the night. It's hard to imagine, the bus doesn't stop here anymore. It's hard to imagine, Dave no longer goes to work anymore. It's hard to imagine, Aviana spends more time sleeping than awake. It's hard to imagine...this is all coming to an end.













































Tuesday, October 15, 2013

Heart to Heart

I have always spent time talking to Aviana - talking her through everything she's about to experience - even though we think she clearly understands her world quite well. She has seizures all day long, so if we warn her about what's to come, it helps to minimize them. If we let her know we are about to turn the music on, about to cough, if we happen to see someone about to knock at the door - it helps her to avoid those ones.  But those are just a few and that's just one small example. I talk to her about everything: surgeries, life, changes such as school, fun things, hard things, everything. I know it helps her to transition, understand, accept, etc. Overall though, I want her to know we are taking her life, and especially, her feelings into consideration. I want her to understand we never making decisions all around, and about her without thought.

In regard to all things Palliative Care though, there was one main place you could find me when discussing things with friends, family and Dave - in my closet on the other side of the house. If not there, Aviana was at school, or asleep. I was trying to keep her, or me, away. Whichever, and as much as possible. You know kids though, and they are the eyes and ears of this institution ; ) 

There came a time though when I knew I needed to talk to her. She had already slowly begun refusing her food. She was already showing people in her life it was time. She had showed her school she wasn't loving her food. My mom and Gary came to visit and no matter how crazy Gary acted, or how loving my mom was...Aviana was staring straight through them. She was taking a stand. She was clearly making it known to those around her. I was both sad, and happy, at the very same time. Both proud of her, and wanted to crumble.

One night, I was holding her while Dave was out doing yard work. Quite suddenly and out of the blue...it just happened. I told her everything. I told her about life as I thought it to be. I told her of all our hopes and dreams for her. I told her although we love her so much, she no longer had to stay for us anymore. That we would take good care of her Nana and Papa. I promised her we would be alright. That her Uncle Roger would be okay too. I let her know the reason why was because we would all be able to think of her as whole and happy. I let her know not a day would ever go by that we wouldn't miss her. I told her she no longer had to stay in this broken body. As I ran my hand over each limb, I told her she would be able to use her arms, her hands, her fingers and legs. I asked if she remembered running over grass? I told her she would be able to once again! She would be whole again - to run, jump and play. She could laugh and smile anytime she wanted. She could talk just as much, if not more, than she used to! Wouldn't you know it, a little smile appeared as I told her about running. Remember, this is the same little girl who just about never smiles. I can believe it too. I continued to talk to her. I reminded her of who would be waiting for her...her best friend in the whole world, Kama. The one and only dog she is loyal to, and loves so unbelievably. Just as much as her Mommy does. I reminded her of all they used to do together before, and after the accident. I both smiled and cried, thinking of the two of them together again. I told her story after story. I was a complete mess, but it felt so good, I think for both of us.

You know, after our talk...Aviana began refusing many more meals. This girl, she has a mind of her own. She always has and proved...she always will.

   





A World of Her Own

I could never have known until I knew, and still...there's so much I don't know. Aviana is definitely an enigma. But even so, there are certain things I know she knows for sure, and that's because she shows me. Anyone who has a child like Aviana realizes - they understand much more than anyone thinks they do. I would surely have thought differently before. She's a true gift, and now that my eyes and heart have experienced her, it's something that can't ever be denied. I am forever grateful to be a part of her world. 

Being a part of her world is an interesting thing because there are people so incredibly close to her, and still can't see in, or maybe don't want to for a variety of reasons - I'm not sure. There are so many factors including: personality traits, life experience, etc., which determine if a person will accept answers to the questions they ask, and continue to ask over the years. Often times, the same questions in different form...with the same answer. There are some who can see it instantly, with just one look. Some, if I answer just one question, grasp her and understand fully. Some, never will. All is okay. Everyone is at their own pace, comfort level, and timeframe. I completely understand. We have always felt grateful to all who have simply showed up (in whatever way) in our lives, and especially in Aviana's.  

Monday, October 14, 2013

Hurts So Good

Sometimes, I want to run as far from you as possible, but force myself to stay.

Sometimes, I want to stay so badly, but the pain is so deep I must force myself to leave.

Sometimes, I want to turn the clock back and have you all to myself.

All the time, I know that's not right for you, me, or any of us.

All the time, I can't make it through reading our favorite books together without crying.

Most times, I can't kiss your sweet face without thinking I won't be able to anytime I want.

All the time, I memorize your soft skin with my fingers so as never to forget.

Sometimes, there is nowhere in this world I would rather be than with you!

Sometimes, I think of a day without you, and I have to stop...

Sometimes, I have to leave the room because I've cried enough in front of you.

All the time, it's beyond words to watch you fade away.

Sometimes, I am so happy for you not to be in this broken body anymore, my heart leaps!

All the time, I love our heart to heart talks.

All the time, I love to cuddle you up in the nest with Daddy and Rainey.

Sometimes, I am incredibly sad when you don't eat.

Sometimes, I am incredibly happy when you don't eat.

All the time, I love crawling into bed with you in the morning.

Most times, when you are despondent - I can handle it, as I understand.

Sometimes, it makes me want to leave home and never come back.

Sometimes, when you are gone...I will smile in a big way.

Sometimes, I won't.

Saturday, October 12, 2013

Along the Way

Everything has happened so incredibly fast this past month, yet sometimes it's felt like I'm watching in slow motion. The learning curve has been immense.  

Since the end of April, we have been working with Palliative Care. Recently Aviana's needs evolved. At the time, we transitioned her to Hospice. 

Between Palliative and Hospice, we've met some of the best people this life has to offer. With very few words on our part, we have never felt so 'got.' Imagine that 1950's house calling, black bag carrying, warm smile wearing, always there for you, doctor. That's everyone in Palliative and Hospice. They are the modern day 'that guy.' Yes, they're that good. But the difference is...they're real. They're not just an image, a picture, a fake - plastered on some billboard, or in some magazine. They are real life, flesh and blood. 

They live in a world in which most people are afraid. I used to probably be the most terrified of all. Ask anyone in my family. If the word death was even mentioned, I did one of three things: immediately shut down the conversation, broke into tears, or like a magician - vanished into thin air. Yes, that bad. I had a lot of growing up to do in that area, and someone up there knew it! In a short period of time, I had to face the 'd' word straight on with Zoe, Kama and Aviana. There hasn't been anywhere for me to run. 

I've learned a few things on my own, but in meeting with Palliative and Hospice, I've learned the most. They have an unbelievable understanding and acceptance of death and dying. I've learned further that it's not what I had so long ago thought...it's not all bad, dark and scary. Although extremely painful at times, it can also be quite the antithesis. 

For this stage in our lives and on our journey, we have all of them - as much, or as little as we want... 

I am grateful. 

We are grateful. 


  

Thursday, October 10, 2013

The Story of Us

Each day I was away felt like its own unique eternity. So much has happened over the course of such a short period of time. Other things too, but the foundation is always and forever Aviana. It all comes back to Aviana. It all comes back to the greatest, longest, ever flowing story I will have ever lived. Everything a true story is full of: triumph, tragedy, beauty, bliss, sadness, and demise. The pages are ever turning, but as they turn...they fall away. Where and when it will end - who really knows? All I know for sure is - this story will be the most beautiful I will have ever told in my entire lifetime.

I guess I should back a little bit. As you may remember, for us as a family, the quality of Aviana's life is most important. As her primary caregiver, I happen to spend the most time with her. Throughout her days since the accident, I've really had to be honest with myself. I've always looked to see how many times her eyes light up. Truly light up. In normal everyday life, I'm great at rolling with the punches. Here, and in regard to Aviana specifically, you might've often read and wondered why these entries tend to dance on the dark side. I'll tell you the truth, that is, if you haven't already noticed for yourself. The reason is because our girl's eyes, face, and body rarely ever truly light up. In any way. It's a fact that cannot be denied. Aviana dances on the dark side, on the sad side. That's not to say she's not cuddly and cute, sweet and loving, and just a downright doll! I'm sure we can all see that for ourselves. But there's a definite difference when you are up close and personally living this life with her. It's just that as a family, to the ones who knew and know her deepest, we just happen to know what's best for her.

Even though Aviana hasn't been able to use her body, we have felt beyond blessed that she has always seemed content. We are grateful she never experienced pain. The only time she ever did was during the failed liver biopsy. Those moments are forever etched in my mind. I never wanted her to experience pain like she did during that week in hospital again. Honestly, it was in those moments that everything came full circle for me. Seeing her in the hospital, in pain, lit a fire within.

It was also at that time, we found out about a much more involved head surgery we would have to look forward to in the future. After recovering from all that, her and I both ; ) The research began.

It was time to find someone, somewhere, who was more in line with our goals and our way of thinking. We wanted comfort for Aviana, above all else. We didn't want her to have this big upcoming surgery on her head. Yes, yet another surgery to add to the long list on such a young girl's life. We didn't want for her to live this life she clearly doesn't enjoy. We didn't want for her to have a potentially bad liver attack at any given moment. We didn't want to force her to eat when she clearly isn't ever hungry. We didn't want the numerous pieces of hardware to continue pushing their way through her head. We didn't want her skull to continue sinking in on her. We didn't want her body to continue to twist up and contort on her. We didn't want to push her through therapies which she wants nothing to do with. We don't want a life for her that she doesn't want for herself. We have gone down this road for over four years and it is plain to see...we must listen to our child. One thing has always been clear, without one single word...she speaks volumes. Everyday. We must honor her and LISTEN. She deserves to be listened to. She needs to be listened to. She wants to be listened to. She will be listened to.

Palliative allows us to listen to Aviana. And as sad as it sometimes can be, it is the most beautiful experience of our lifetime. The beauty lies in giving our girl what we have always wanted since the accident happened - and that's the control and independence she once had. After all this time of her following our lead, we have now been able to follow hers. She calls the shots. She tells us what she wants and doesn't want, and we listen. If her boots are bothering her, no more boots. This stage of her life is all about comfort. We are here to keep her as comfortable as possible.

But guess what? She has recently developed a new/not so new level of comfort. I'm sure if you've been here for any length of time, you are familiar with our feeding challenges. She started off strong with the food by mouth and so we started chopping it up for her. As with all things Aviana, as the novelty wears of, so does her interest. Dave's brilliant idea worked for a little while, and now the newness has worn its welcome. Aviana has slowly began showing everyone, enough is enough. She slowly started refusing meals here and there. Lately, she has begun picking up momentum. We will of course, continue to offer all of her meals, but won't force her to eat them. We are working closely with all of her doctors. As you can imagine, this has been a very difficult, yet at the same time, peaceful process. It is so strange to switch gears when all you have known as parents is a one-way street. It's an unknown path to have a child wish for something else, but we are willing to learn, and are. Above all, we have to respect her wishes. To be honest, it feels so good to respect her wishes. It makes you cry...like a lot.

I have to say, Kama honestly paved the way from me. She showed me how. She prepared me for what was to come. It was the most hurt my heart has ever felt, but the most peace I ever felt too. To love someone so much that you would sacrifice yourself for them. Every time Aviana refuses to eat, and we honor her by not making her...a peace comes over us. Aviana is choosing her path. There's an indescribable beauty in letting someone you love go their own way. Even when it breaks your heart, it has a way of healing at the very same time.

Monday, October 7, 2013

It's Been A While

I've missed you!

Thank you very much for sharing with me the last time. In you, I was looking for more of me. I'm familiar with where I journey off to in times of need, but I was searching for more. I'm constantly trying to fill the open spaces within my heart. Trying to patch and piece together, and always attempting to make some sort of sense.

At the time of my last post, things were wild. So much has happened, and will continue to. The last time, I was desperate for more. I am on a never-ending journey to further heal this heart of mine. I'm forever in search of ways to have it ((❤)) glow more brightly and beat more fully. In all of this though, I ultimately want calm. I need calm. I do my absolute best to seek calm. In all, I want to feel as at peace as possible. It's possible, right? Right : )

I am forever craving, hanging on peoples' every word, quote, saying, song, anything that has meaning in my life today. I want to see the things I cannot see for myself, and hear what I have not yet heard. Again, in you, I was looking for more of me.

As I read each of your stories, my heart went out in a completely separate way. And even though I wished none of these individual, or collective, things to have happened...they made me realize so many things.

If you have to go through hell, it's much better to go through it together! It's so much better to be able to talk about, share, and come together, than go it alone in a corner by yourself! Dave often wonders why I look for other stories. He thinks I am on the slightly morbid side. Nuh uh. It's because this life can be so lonely in itself. I am an island here in this house, in my town, in what feels like...forever-ness. So I go outward to avoid feeling so alone. And out there, I find all of you amazing people who are willing to share your stories as well. I am so grateful.

We couldn't have ever fathomed. I see it in most every story I read, and every one you shared with me. If we weren't ever pushed to our outermost brink (although we probably sure as hell wouldn't chose to be ; ) we wouldn't have a clue what we are made of. We have all gone so far beyond what we ever thought humanly possible for ourselves, and most importantly, for those we love. Even when we didn't want to, and were kicking and screaming every step of the way...we did it, and continue to. It's truly unbelievable.

There's such beauty in every breakdown. I can't say this enough. I try to think it every time I'm coming undone. Ha Ha! "There will be beauty, there will!...eventually!" I have to pep talk myself through. It's funny, but in it, as awful as it feels...I know this to be true. In so many stories I read and yours too, I see it! It takes a certain kind of person to be able to walk through tragedy, or continue walking through difficult things and see the good all around. And it happens all the time. Because when you've seen the horrific, and you know how bad it can be, and how life can turn on a dime, you know to appreciate the good. You know to take time in the tiny...lounging around in the nest with the family watching Suits, unexpected rain, catching a lizard on a walk, Butch Walker's new EP...so I lie, that's not small, but you see what I'm saying. You suck every ounce of it up, because you know full well that in an instant, it can all be gone too! When you've walked on the other side, you realize how fragile life is, and how insignificant small fights are, if something burns, or breaks, or if the car gets scratched, etc. These things can all be fixed. Lives, brains, and bodies often can't. From what I've seen, every breakdown has a way of pushing us further into knowing what's truly important. Every one gives us a better understanding of ourselves, our surroundings and what our lives are all about. Sometimes, whether we like it, or not...

Compassion and Love. My gosh, it seems anyone who's been through something, or can just empathize, never ceases to amaze me. I was a compassionate and loving person before, but having Aviana in my life for the past 4+ years has taught me an entire other realm of these words. She has been the greatest teacher of my lifetime. But the depths of these definitions...I cannot even begin to describe. I know many of you here can relate. In your words...I felt what I feel. The deepest, most heartfelt compassion, empathy, and love. It starts on the inside and spreads all around. It's one of the most beautiful, priceless, gifts we have to give!

---

Anyway, I want to apologize for how long it took me to write each of you back. It was so important to me, but in doing so - I really wanted take the time and think about what I wanted to say.

I'm in such a different place today, than when I wrote my last post. There were so many things hanging in the balance before, unresolved. Today I feel much more at ease. All has fallen into place, and a fuller understanding of our path ahead is known. That's not to say the journey will be easy, not at all, but it will be peaceful.

I know, so much more to say...and I will : )