How?

How can I soothe the soul of a grandmother who just lost the only grandchild she's ever known? The one she loves more than life itself? The one who meant everything to her? I can't. I try…by keeping her busy, taking her to the movies, to lunch, baking. But truly there's nothing I can do to fill the void. To fill the emptiness of where the most beautiful little girl used to reside.

She knows the logic of it all. She understands the blessings. She grasps all the reasons why it's better for Aviana to be there, and not here. But beyond all that, sometimes it just plain sucks. And she misses her dearly, and wants so desperately to hold her. To love her. To have her back like she was before all the bad came knocking. I can't blame her. We have those moments too. 

My mom is one of the strongest people I've ever known. She has taken all of this far better than most ever could, but this week - she's struggling. She knows she will get through - but still - it hurts me to see her hurt so deeply. This is an unresolvable situation. So all I'm left to do is talk, mostly listen, and most importantly - offer comfort.

I love you mom. 

As we always have, together - we will get through.

***

I did not think for one moment my mom, of all people, would stand up and speak at Aviana's service. As I said though - she surprises me when I least expect it, and is tough as nails, but also the sweetest little momma too!

***

Thank you all for coming to celebrate Aviana's life with us.

I would like to share an intimate moment I shared with Aviana.

If you knew Aviana - energetic, strong willed, and very independent.  Hard to keep down.

I would hold her little hands, look into her gigantic, bright, sparkling brown eyes.....who can forget those long, long, eye lashes too, and sang to her:

You are my Sunshine
My only Sunshine
You make me happy when sky's are grey
You'll never know dear how much I love you.
Please don't take my Sunshine away.

She would look at me with even larger eyes, a smile on her face, then with a questioning look on her face, in her little voice and say SHUNSHINE??  I would say yes, hug her, and off she'd run and play.

My Sunshine is gone.

I miss her....

Jen and Dave call her all sorts of names, ie Mekey, Coo Coo, etc.
Papa calls her HIS CHOCOLATE EYES
Nana calls her HER SUNSHINE

Jen and David, the greatest parents and best caretakers have done a tremendous job with her.  Now...the most powerful caretaker is holding her in His loving arms.  Aviana is FREE and at peace.

SUNSHINE thank you for your love, the best of times, the happiness and joyful MEMORIES.

Papa

I want to share some of the speeches from Aviana's memorial service with you. The following was by her Papa.

I want to thank you for coming today to honor Aviana.  For those of you who don't know me I am Aviana's Grandfather, better known as Aviana's Papa.

Aviana Reese Hodder took me totally by surprise!
The day I met Aviana she was almost a year old and had just arrived from Guatemala.  I can remember thinking to myself how nice it was that Jennifer and Dave adopted this cute little girl.  I could imagine all the wonderful times they would have together as a family.  I had no idea this beautiful little girl would soon take over my heart, and fill my soul with so much love, it was beyond comprehension. 

Brenda and I found ourselves spending as much time as possible with Aviana.  We often had her spend over-nights with us.  We took her everywhere.  We took her to parks, we took her shopping, and we showed her off to all our friends.  She filled our hearts with joy and made us laugh.  Everything was better when Aviana was with us.  She made an ordinary day come alive with her sweet personality, crazy antics, and loving ways.

Aviana was a loving little girl with a very unique personality.  Like all little girls she had an infinite amount of energy and curiosity.  Aviana also had a strong independent nature and liked to show you she could do everything herself.  That included being able to put on her own diapers at the age of 18 months.  She also had the ability to turn me into a complete marshmallow, and she knew it.  All she had to do was look at me with her big chocolate eyes and I would do anything she wanted, no questions asked.  Every time I looked deep into Aviana's soulful brown eyes I could swear I saw God looking back at me.  

Although the time we had with Aviana was painfully short, she still left us with a lifetime of memories.  I would like to share three of those memories with you today.

Aviana loved the water.  Many times when she was staying with Brenda and I, we would take Aviana to play in our homeowners association pool.  All I had to do is ask her if she wanted to go for a swim.  Without a word she would immediately disappear into her bedroom and would reemerge a minute later wearing her swimsuit, a float tube around her waist, and dragging a small air mattress behind her.  She would have a big smile on her face and say "Let's go Papa!!"

Another fond memory was the simple chore of Aviana walking with me to pick up the mail from the mailbox around the block.  When we got to the mailbox Aviana would insist on helping Papa by taking all the mail out of the mailbox and carry it back home.  On the way home, many times I would have to pick up pieces of mail that fell on the ground, as it would slip through her little fingers as she walked with me.

Last but not least, one memory I will never forget, was the day Brenda gave her retirement speech at Chevron headquarters in San Ramon.  Dave and Jennifer were there, along with Aviana, to celebrate the event.  The large hall was crowded with a lot of people.  Chevron was celebrating several  retirees.  Each retiree was to give their own presentation.  Everything went normally up to Brenda's presentation.  As soon as Brenda started speaking, a little girl's voice could be heard very distinctly coming from the back of the room.  Aviana was calling out very loudly, "NANA! NANA! NANA! All through Brenda's speech.  I enjoyed that immensely, knowing Aviana was her biggest fan. 

Then one day when Aviana was almost three years old, the wonderful times with her came to a tragic end.  That was the day Aviana and I got into a terrible accident.  We were hit by a car while crossing the street.  After the accident we tried everything to help her, but nothing worked.  For four and a half years Aviana's beautiful soul was trapped in a body that no longer worked.  There is no way I can describe to you the heartbreak and pain our family felt each day, especially on Aviana's birthdays and the many holidays that went by. The best we could do was to hold her, talk to her, and love her, so that's what we did!!  

Today I want to thank all the loving friends and family that supported and helped Jennifer and Dave through those very difficult times.  In particular I want to thank my brother-in-law Roger Remedios for being there for Jennifer and Dave every step of the way, and for generously giving his time every Friday, for four and a half years, to be with Aviana. 

Aviana is now in a better place.
Aviana's soul is at last free from the bondage of her broken body.
I pray she is with God looking down on us right now, saying in her little sweet voice "It's OK Mommy and Daddy, don't worry about me anymore.  I am alright now.  I am happy again."  

Thank You

Aviana's Elves

I had the perfect plan all lined up for Aviana's Elves this year. We were all on a secret mission. It was already fun, exciting, exhilarating, and just about to be announced! Then…everything changed.

Aviana's path became clear. I realized our initial plan needed to go on the back burner until next year. All of our energy and attention was going to be needed in one very important direction and for an uncertain amount of time. I immediately came up with a back up plan in case our girl took flight. I thought it would be just as good, but in a different way.

Family and friends had been inquiring, so I included the idea earlier in lieu of flowers for Aviana's memorial. If you happen to want to join in this holiday season and in the name of Aviana, we would be honored.

Aviana meant something to each of us and for a unique and personal reason. This holiday season - if you would like to make a donation to anything that reminds you of her, perform random acts of kindness, or spread the happiness and love of a little girl who meant everything to us, we would be humbled.  

If you happen to want to share with me, I would so love that too. I will be including them throughout the season.

Thank you so very much for always supporting us, but especially loving Aviana!

Missing Aviana...

***

My friend Sarah, whose daughter Lily was Aviana's best friend, started a campaign called, "Acts for Avi." To say I cried my eyes out seeing all she has done is an understatement. I love you Sarah…you have my whole heart!

Here are a few I received in October...

Today, in honor of Aviana, I smiled all day purposefully to make others smile back. You never know what others are going through and knew that if Aviana were able to smile, as he would most certainly try to make those around her smile too.

~ Sarah

#actsforavi

Today, I publicly forgave the child who wrote racial slurs on the outside of my front door. He vandalized our house, because my children are adopted from Guatemala, and we are a multi-racial family. So I am dedicating an act of forgiveness to Aviana.

~ Uncommonmama

#actsforavi

Thank you so much Sarah and Uncommonmama, these are what keep us going. Knowing Aviana has made a difference in the lives of others…thank you.

❤ ❤ ❤

In Memory

***

I want to thank my cousin Erin for everything she put into making this video. As it turned out, she had her work cut out for her in working with the two of us ; ) As I look back, I realize - without each of the three of our ongoing ideas, the video wouldn't be half of what it turned out to be. 

I love you Erin! Thank you for every great suggestion, your honest feedback, your mad computer skills, the endless tears, and everything in between.

HoTog Forever!

In Answer

Whenever I write, I am ready for every walk of comment. I understand we all arrive where we do at any given moment from our accumulated life experiences, which I imagine can be vastly different from each other - even if our situations appear to be the same. We all come from the ground up and from a multitude of backgrounds and beliefs. I feel an open dialog is important. It's not my interest for everyone to agree with the choices we've made for our family. That's impossible. I wouldn't ever expect it, as no one has ever been in exactly our position. The same goes for us. I would never assume I know about anyone else's situation, even if theirs looks undeniably similar to ours. I would just hope that if I explain well, people could try to understand where we are coming from.

I have to say, your love and support was such a blessing to us. I have gone back and read and re-read so many of your comments. When I have the time, I plan to comment back on some of them. Thank you so much for taking the time to find the perfect words. All of them were so well written because they were from the heart, and that's all that matters.

I try hard to explain our thought process to the best of my ability, but sometimes I fall short. An example of this was brought to my attention through a comment I received. I thought I was going to be able to refer this person back to a blog post, but after searching for some time and really only coming up with this all encompassing post including many important links - I realized there wasn't one to be found. Somewhere between Dave and I coming to an agreement about posting, this most important information was lost. I honestly couldn't believe it. The information from our very first Palliative meeting was missing, which just so happens to be the very same information which I lead with in explaining all things feeding to each and every family member and and friend!

I appreciated this person for bringing it to my attention, but beyond that, I also appreciated their comment because they were respectful and wanted a better understanding. I think that's what it's all about.

This was the comment I received. My response follows -

      

AnonymousOctober 23, 2013 at 7:00 PM

Hi,
I'm just now catching up on your blog and love reading about your family. From what I'm reading it sounds as if Avi is starving herself. I appreciate all you have been through and the love that you have shown, and I hope this isn't the case. I can't believe that a child like Avi understands not eating....and that any doctor would support not feeding a child intentionally to allow them to die. Just trying to understand based on what I have read. I'm not passing judgement just trying to understand. I can't imagine that this is god's wish for anyone especially a child. Good luck to you all and my thoughts are with Avi hoping that the right decisions are made by all.

JenOctober 24, 2013 at 6:31 PM

Hi ~

I want to thank you so much for how respectful you were in your comment. I truly appreciate you for trying to gain an understanding without passing judgment. You seem like a really good person. I completely understand where you are coming from. Our first reaction in regard to the feeding issue was similar to what you are expressing. After first meeting with Palliative, I don't think I slept for 3 months straight, as it was so unexpected. I had a record number of headaches at that time too. I was up researching and plain wondering and thinking what was best for Aviana.

It's funny how I think I've explained things on my blog and then receive a comment such as yours and realize how I really haven't. I'm so glad you brought this up. We have talked to all of our family and friends about the details, and like I said...I actually had to go back as I thought I definitely had on here too. But I now know, I have another (very important) blog post to write.

Everything now is so raw and pressing with what is currently happening. I have so many swirling in my head, but will definitely have that one in the mix...in time.

Thank you so much for being so thoughtful and kind. I really appreciate it.

***

This was another I received, which I actually thought was valid as well.

AnonymousOctober 25, 2013 at 7:15 PM

Are you letting her starve herself?

***

As I said in the last post, Dave and I walked into our meeting with one agenda and out dazed and confused. Upon walking in, we met with a doctor and social worker. The doctor explained they had reviewed Aviana's file, but asked if we could tell them about her. I explained all about her background and then emphatically said, "we do not want to see her suffer in any way. She has suffered enough in her short life. I explained all the surgeries she had been through, and exactly what had happened the previous year with her failed liver biopsy. I made it very clear that I never want anything like it to happen to her again. I talked about her liver numbers and how we want the remainder of her life to be comfortable. 

We also explained how she had a big surgery coming up on her head and how we did not want to put her through it. I also spoke of blood draws, and all other things that cause her discomfort. I expressed how I want only calm for her. Then, I spoke of our main problem. Dave and I never wanted to get her a feeding tube again as it felt as though we were moving back towards a form of life support. We only got one in the first place because it allowed her a chance at a recovery, but we had spoken the weeks before the meeting and decided on it again as we didn't know what to do and felt it was the only option! Eating had been causing her too much suffering over the years, as we, and everyone else who fed her had been forcing her!!! 

I told the doctor of how we fed her and that no one could, not us, not her school, not anyone. I explained how she would maybe start off okay, but then would quickly start clenching her mouth, and would not open for her food. I further explained how she would either hold the food in her mouth or blows it all over the place - the couch, us, the floor, our dog, everywhere. I explained how this had been going on for years and how we had been working with our GI doctor trying to figure out a solution, as we both knew it didn't have to do with her brain injury and had everything to do with Aviana, and her behavior. I explained how we were at the end of our rope and we were about to set the appointment for a feeding tube, as we absolutely did not want her to suffer anymore. We only wanted comfort.     

This is when he stopped me. He understood everything I had said. He reiterated all of our requests for Aviana's comfort and then posed a question. He asked something along the lines of, "I heard you say you don't want her to suffer. And that you don't want to put her through anymore surgeries, but you want to put the feeding tube back in?" My head felt like it was on a tilt-a-whirl. I looked directly at Dave, because I didn't think I had clearly explained. I thought for sure there was a breakdown in communication. I repeated myself, "no, we don't want her to suffer - that is why we want the feeding tube. She is choking and gagging on her food. She is coughing it all up. We don't want that." 

Both he and the social worker nodded in agreement. Then he too tried again, "we are here to give you all of your options. You said you didn't want to put her through another surgery, so you can either put the feeding tube in, or not?" At that point, I felt I was either in the Twilight Zone or speaking straight Chinese. I looked at Dave, and then suddenly it hit me. I knew exactly what he was saying. I was the clueless one. I was the odd man out amongst all the others in the group. He was saying to stop feeding her when she wanted! Wha?!?!?! I'm a mom!!! I can't do thattttt! Apparently, I was the only one who didn't get it that day, and every time I've re-told the story! Slow as a snail sometimes...

I must have gone white like Casper. I felt sick to my stomach as her sweet little Miki face crossed my mind. I wanted to run, escape, throw up, be a kid again, anything but be where I was talking about what I was so not prepared to talk about. All I could think was - this wasn't on my list of things! I wasn't ready for this!! I looked at him. And after I picked my jaw up off the ground, I said, "is that legal?" And right as the words rolled off, my next thought was - yes, Terri Schiavo. Yes, it's legal. I looked at Dave, he was in as much shock as I was. We looked at him and both said, "we could never do that." 

We moved on. We began talking about things on my list. Vaccines. I wanted to talk to him about vaccines, which should I have her get? Which, if any, would be a good peaceful way for her to go? Our sick, sad, but necessary conversation rolled on, but there was one single reel playing in my head and it was the feeding one. 

Cue the tears, I can't write this without them. I'm her momma, and as much as I didn't want to, I had to remind myself why we were within those four walls. We were there to discuss the best way to keep our girl comfortable and ultimately the most peaceful way to let her go. Just because the content of vaccines, bronchitis, pneumonia, a collapsing skull, and a failing liver made me more comfortable…that wasn't the point. The question was, what made most sense for Aviana? We knew since the accident Aviana hasn't cared one single bit about food. She could take it or leave it. I knew if I left that meeting without asking, I would have to give myself one swift kick in the ass!

So I had to interrupt. I took a deep breath, found every ounce of power I could, and actually forced the words from my mouth, "the feeding, can you tell me about it…is it peaceful?" He explained, "it is very peaceful. Especially since it sounds like she isn't interested in food." He walked us through the process, of how we would feed her what she wanted and then stop when she refused. We would continue to do this until. He said she would get weak and then just go to sleep. We asked about medication. He said Hospice would be involved and would provide what was needed.

The weight of the world was upon our shoulders. I believe we both knew in our hearts that letting Aviana choose her path in regard to feeding was the exact right answer, but it would all come down to if we could actually reconcile it all within ourselves.

I didn't sleep for about 3 months; my headaches were at a record high. You could find me up all night researching and often during the day too. Here are just a few examples of articles such as this, this,  this, this, or this. I had an outrageous amount of them in my favorites, including Power Point presentations, blogs of people who had stopped and their experiences, article upon article beyond the ones I linked, everything. I became obsessive. For months, I watched Aviana's every move - making sure what we had thought and were seeing was true and real.

Most days Dave and I were silently wading through the enormity of what was at the forefront of each of our minds. It was too much to bear if we gave it a voice just yet. Every once in a while we allowed it some air just to see where we each fell, and then silenced ourselves once again. I was moving faster than he was purely because of my position with Aviana. I was up close with her all day and night long, so I saw more of her reality than anyone.

In the meantime, Dave had discovered the sippy cup idea, which worked for a while…but really did nothing for her quality of life. As with all things, she tired of it and was back to refusing her food on a regular basis. By that time though, together we had already made our decision. We had decided that every possible reason for keeping Aviana here was selfish.

Our choice felt most right for Aviana. It's an awful thing to be a parent in a scenario like ours. Sometimes it felt like playing a warped version of The Price is Right. We had to determine if we wanted Door #1 Bronchitis, Door #2 Pneumonia, Door # 3 Failed Liver, Door # 4 Food Refusal. We chose the latter, and for many good reasons. Aviana was non-verbal, but was definitely choosing her path loudly in this area. If we waited for the others, they may come on fast and furious. She could end up in a lot of pain and also in the emergency room and with extended hospital stays. This would surely involve needles, tubes, etc…and be in the place we didn't want for her ever again. We felt by listening to her, we could also control any pain before it happened and keep her comfortable at home, surrounded in all she loved, and who loved her. What more can anyone ask for?  

So, we tried a few times to stop feeding at her request. To really feel what it would feel like. It was hard, but it also felt good to listen to her, to respect her.

I, especially, had felt so much guilt for too long for force-feeding her. For always keeping her perfect weight. For making her eat. Dave used to think the dishwasher bent her spoons in the drawer, but it happened because of me. I fed her the most, and sadly I was guilty of that sometimes being the result of her not opening her mouth. I feel sick thinking of all of us feeding her.

I don't think people should be forced to eat, and the more people I've talked to about this, the more I understand to have gone through this natural progression. In fact, the person I was most terrified to tell was my mom. Her whole world revolves around feeding people, as it is the way she shows her love the most. I thought it would surely break her and she would never understand, as Aviana is her entire world. I was so scared, I kept it from her the longest. But my mom has a way of surprising me when I least expect it, and she sure did with this. She understood this concept and even said my grandma (who I was unbelievably close to) did this towards the end too. I had no idea.

So yes, it felt good to stop when Aviana said stop. From the day of Aviana's accident, she always let her wants and needs be known, that never changed. Just because she was severely brain injured doesn't mean she couldn't throw a stink eye like the best of them. No longer was there a power struggle, she became much more at ease. Her whole demeanor changed. Just because she was a child, doesn't mean she shouldn't have a say. It doesn't mean she shouldn't be given some control over her life, and the power to say when enough is enough. I would put myself in her body all the time, and I wouldn't blame her for a second.

We would put her to bed and she wouldn't be able to move from that position. I would try to imagine that for myself some nights. I never lasted long and would end up in tears. I would go in her room in the morning and she would be covered in mosquito or spider bites because she couldn't fend for herself. Even though we have Clark Pest Control and put a Bug Band and dryer sheets in her bed. Sometimes, her hair would be across her face, as she was unable to swipe it away. Just a million tiny deaths for all of us. I don't blame her for one second for refusing her food, and I don't blame us for one either in choosing our path. I actually have called Dave at work a few times crying. I will have been looking at pictures and through tears, I can barely speak, but the words that finally come out are how proud I am of us for being brave enough to do what we did for our love. As much as I miss her at times, and boy do I, I'm more happy for her.

As her parents, we knew exactly what she wanted…and she wanted out. We believe you should let someone go when they want, and in their own time. We believe in our case we needed to let nature take its course and not sustain life at all costs and through artificial means. I speak for our family, and have no judgment about what other families believe, as I know it's such a personal, intricate choice that hinges on much. We are fully at peace with God, and his will for us, and especially Aviana. We are thankful to Palliative and Hospice because everything was just as they said. Aviana's journey came to the most peaceful end I have ever witnessed. Well, just as peaceful as when we let Kama go. What more could we ask for? We have been blessed. Our family has been blessed.

So we personally don't look at it as starving her, or her starving herself. I can see how it might seem that way to the outside world though, and I understand. My hope is that I have shed some light on the subject. In the end, we respected Aviana's wishes. We gave her back control of her life. We honored her. We loved her the best we could, and will love her for the rest of our lives. 

The Reason Why

Initially, I decided to share Aviana's story for a few reasons. Over the years, that reason has transcended my original purpose. At times, I've been gently nudged to downright advised by family or friends that it might not be a good idea to write about certain subjects. My thought process is always the same; these are important parts of our journey - they have to be included. Every detail of everything we did for Aviana was always well thought out. I figured if I explained to the best of my ability, then there was never a reason for these topics to be hidden.

If they happen to fall on the side where people may not agree, or might question - that was okay too. It's okay for people to disagree, or question. For me, that wasn't a good enough reason to withhold. While I understand and appreciate my loved one's desire to protect us - my need to include these subjects always prevailed. Each was a real, raw, story of what we were going through.

I understood that others may not live their lives in the same manner, but to me, that was part of it. That's a good thing. It's the very reason why I like looking into other people's lives and stories...to try and gain an understanding from them. Maybe the information makes me cringe, maybe it's just what I've been searching for, or better yet, may favorite of the bunch - maybe I thought, 'I couldn't imagine'…and then, somewhere down the road I've quite suddenly found myself in an oddly similar situation and had to riffle back and remember where I saw whatever it was that struck me sideways.

Information is so important to me. I have always felt sharing what we've learned is necessary, even if it dances on the dark side. It helps to create a healthy conversation. Speaking of a conversation, I have answers to a few questions I was more than happy to have received. I have a post all ready to publish later today.

The way I see it, life can be tough. At some point most everyone will be faced with difficult choices, ones we struggle to make. In my opinion, the more we sweep these subjects under the rug, or keep them all to ourselves, the smaller our world becomes. And the smaller our world becomes, the more alone we feel within it. I personally gravitate toward stories where I can find an open, honest, thread within them. I seek the ones which share multiple sides, and steer clear of the one dimensional variety.

I have always done my best to give the good, the not so good, and everything in between. In the end, I feel every moment makes one full incredibly beautiful story!

When I discovered Palliative Care, everything changed. It became crucially important for me to include this information on here. These words were different than any I'd ever held before. From the moment I knew these two single words and their meaning, our world evolved. They each took on an electric charge of their own. They spun wildly within, creating an undeniable magnetic field. Their force - pulling strongly. From me...to these very pages.

These things take time though, and honestly, it took everything in me to hold them back. Initially I had to though. Everything is a process. I went into our first Palliative meeting thinking I knew all we were there for. I fully expected to walk out educated on all subjects we entered with, no more, no less. Oh no. Not at all. We were blindsided. We walked out in a haze. A complete daze. One which caused this tizzy of a post. I wanted to spill, but couldn't, as that would have been irresponsible of me. There was so much to think about, process, research. I didn't know which way was up, down, anything. I needed time. We needed time.

The only person's approval I seek for weighty posts is Dave. If he says no, it's no, and I fully respect his opinion. After talking it out, he said yes to the Palliative post at that point - and for the first time - no to the other. The other being feeding issues. He wasn't comfortable just yet, and I fully understood why. This information was so new, so unknown. We needed to simmer.

Writing about Palliative Care was one thing, but including all things feeding, or lack thereof, was of utmost importance to me! The reason is simple - if in our lifetime my words reach just one person who is in a situation similar to ours, and didn't know, but now does, my work in this area will be worth everything. We didn't know, and our hands were tied. We were helpless. We couldn't do anything for our daughter, except hold and love her, even though everything was plain to see. And see by all…my Mom, Gary, my Uncle Roger, Dave, everyone. Especially me, as I was Aviana's primary caregiver.

We saw a child who knew she wasn't going to get any better, who knew she could once do everything and now her quality of life was almost nothing. We saw a little girl who was doing her best to tell us, but as much as she did, there was nothing we as a family - the ones who loved her dearly - could do. And for that, it just created more sadness. We saw a little girl who as hard as we tried to include her in everything…still remained alone, and lonely. We saw a girl who had many medical problems and upcoming procedures we were not looking forward to putting her through. And all for what?

Our wishes were known for our daughter. We all knew who she was before the accident, and what she wanted for herself. So we were left to pass time, all the while making the best of our situation. We had no other choice…or so we thought.

Now, when I think about Palliative Care and Hospice, often times my eyes fill with tears. I am so grateful to them as I scroll back through and look at the past 4 years of the great majority of pictures of Aviana's face (especially since Kama died). I bawled when I looked at some pictures her school recently sent. The tears sometimes come when out of habit I look to the couch and she's not here. They are maybe not what you think though. We miss her dearly, but more than that…we are grateful they helped us to finally set her free, as free is all she wanted to be.

Multiple times a day I am grateful to them for being there, for doing what they do. I am thankful to them for being the brave and courageous in a sea of scared, and fearful. I see them as the ones who will talk about what no one wants to, especially when it comes to a child. The ones who respected us, and especially Aviana's wishes. They heard and understood our every concern, but especially our every hurt. They shared in our deepest desire to keep Aviana comfortable. They not only joined in, but also showed us exactly how to attain our every goal to ease any upcoming pain…and all at our own pace. All with a gentle smile and a loving heart. They untied our hands. But above all, they gave us permission to listen to our daughter's voice. I will forever be grateful.

I don't dwell in the had I known, because I do believe every moment with Aviana is as it was supposed to be. I do however want anyone and everyone in a similar situation to know these words, just in case. I want them to know so if they happen to have a child, or anyone of any age, who was like Aviana - there is someone who can help. And I don't mean the people along the way who by nature and position encourage you to continue on.

Everything in us knew otherwise for Aviana. We were her parents. We knew the exact needs of our child. What we didn't know was where to go, or who to talk to.

Blessed

Today we are thankful for so much, 

but this year - 

we are most thankful for Palliative and Hospice.

We had a really nice day today. I hope you did too.

❤ 

Me - The Busy Bee

Lately things have been a whirlwind. Everything swirling at once, but thankfully in perfect harmony.  There was so much in need of time and attention lately. The main being Aviana's memorial service. Her day was this past Saturday. It was everything we hoped it would be. The perfect day, for the perfect girl ❤

I have post upon post, partially written, or dog piled in my head. They are ready to go, but every time I sat down I would get distracted - by a phone call, a new idea for Aviana's slide show, oops I forgot to put the bookmark order in or invite so and so, maybe Dave would mosey on in and tell me about his workout that day, the list was never-ending. The end result - I could barely string together a single coherent paragraph : (

I guess this post is to say…I'm so excited! I finally have the time to get what's in…out : )

Clean Up on Aisle Jen

For me, most of the sad moments hit hard and fast. Some creep and crawl, but most jump up and out of nowhere. They all seem to be of the same sort though, and that's adjusting to a life without Aviana.

A couple weeks ago, we took our first trip to the grocery store after Aviana died. We were just wandering around as always. 

Dave: What do we need?

Jen: I'm really craving hummus. Can you grab some dill, and a cucumber please? I'll get a lemon.

Dave: Okay, anything else over here?

Jen: You know, I actually don't really feel like hummus. I don't know what I want.

Dave: Okay, I'm going to get some sweet potatoes.

The sound of those two simple words caused tears to rush my eyes. No amount of skyward staring or hand waving helped. I looked at Dave and told him, 'I'm really doing it. I'm crying right in the middle of the produce department. Aviana used to eat sweet potatoes. We used to buy them for her. We don't need to buy them for her anymore.' The tears were streaming down my face.  At first I tried, but as I stared at the people staring back at me…I realized - there was no use, I was too far gone.

Suddenly I began firing on all cylinders. Smoke billowing. The thoughts were ducking, and weaving like a boxer, but a sucky boxer - maybe in his first fight, or one he was definitely going to lose. My thoughts were uncoordinated and bouncing all over, and into each other. 'What? Where did you come from?' I wanted out of the ring, but there was no way out. Oh no, uh uh…this is going down! Right here, in the middle of the store. And all Dave could do was sit ringside with the pumpkins and pomegranates. Everyone, watching my demise. At this point, I couldn't even see straight or tell what I was saying out loud, or to myself. I do know one thing though; I was talking to all three of us - him, her and me. In retrospect, I'm kind of impressed given how fast it all happened. 

'We don't need to buy sweet potatoes for her anymore. She loved sweet potatoes. Baby, that was the  one thing you did like, those sweet potatoes. Maybe you could have lived on sweet potatoes alone...for all of your life. No, that's crazy. You would've gotten tired of those, just like everything else. Aww, even if you could have lived on only sweet potatoes, it wouldn't have changed your life. Baby, I'm so happy you are out of this life. But we miss you so much, but we are so happy for you. But we miss you. Can you believe we won't ever shop for her again? How do you do that? How do you shop for someone, and then never again? We are. So I guess we know how. Oh Aviana, you taught us so much!!! All because of you we are eating this way. We would never have learned about nutrition like this if it weren't for you. Oh the irony. Oh Aviana...

Dave: Hon, are you okay? Maybe we should move over to the wine.

(Dave's the best. He always knows exactly what I need and that's to just be heard, a little direction and to go through it : ) 

Jen: Huh? Yeah. I'm okay. Really, I'm okay. I can stop crying. Noooo, I can't. Yeah…the wine section.

Dave: Are you okay?

...we would never even have completely started shopping here if it weren't for you!! If it weren't for Aviana we would never have learned to eat the way we do. She was the most unbelievable little girl. She taught us so much. She made us better people. I miss her so much. My gosh, I am so happy she is free.

Dave: I know. I am too. Honey, do you maybe need to go to the bathroom?

(He always knows I'll be fine once I have a little space and can breathe again. I just love him. A dance you perfect over time…for sure.)

Jen: No, I think I'm okay. Actually, now that you said the word, I do think I need to use the bathroom. I'll be right back.

~ Exit bathroom ~

Jen: Hey Dave, do you know how we're doing on crackers?

All over a sweet potato, but of course, it's not just about a sweet potato...

We Are Too

Two weeks ago this morning, I walked into Aviana's room. My senses became aware of two distinct things; silence and stillness. I knew immediately, Aviana was gone. She was free; free of everything that had bound her so tightly. I remember exhaling an inhale I had unknowingly been holding for what seemed forever. I slowly walked over to her, not with dread, or sadness or anything of the sort, but relaxed and with relief; maybe the kind she experienced as she made her final accent. I felt a sense of peace wash over me. A lightness I hadn't felt since the accident.

In the days since, Dave and I have both been good. From reading all of your well-received comments, I think you probably understand the good. Our story is different; maybe from other loss patterns. Because Aviana is finally at peace, we are too. After all these years, I am finally at peace. I feel I've been walking around with a huge, heavy weight around my neck. I compare it to how Aviana could barely hold her head. I feel like I was subconsciously mirroring her, like I was a reflection of her. Now that she is free, so am I. 

While she was here, I was in constant conflict. For many reasons, I was at odds. I know I've talked extensively on here about endlessly loving Aviana, but struggling with the constant pain of seeing the writing on the wall. Finally, the conflict has fallen away. Just as she is no longer bound to her body, I am no longer to the internal battle. I am thankful. 

Dave went back to work for most of this week after being home for three. It was a little strange to dismantle, but we three did fine. We manage through any sadness with positivity. Some unexpected grief which surfaced after Aviana passed was of her before the accident. We thought we had fully grieved for that girl years ago. It's quite complex losing two girls in one, but actually I suppose it can also be okay, if you let it.

We manage through any sad times with thoughts of Aviana whole and running wild. They are further sealed with a smile on her face and a certain dog at her side. Thoughts of our former Aviana are helped along in knowing this was to be her journey here on earth. I push through knowing I will make sure to never let Aviana's story or spirit die along with her. I will do my best to never let anyone forget the little girl who taught volumes, although never spoke a word in her more recent years. I will also never stop living my life in honor of her. Her time may have been short, but her legacy will last a lifetime!

So those are just some of the things that help carry me through the sad. And to be honest, they are just moments. I had an idea, but I didn't really have any idea just how much her broken state affected me. Multiple times a day, I catch myself smiling at the fact that she isn't having to endure this life anymore. I worried all too much about the state of a little girl who could never fully tell me. While she sat alone, I saw the sad and lonely on her face, and in her eyes. We all did the best we could to include her, to hold her, to love her, but there's only so much we could do. She is now being taken care of by the greatest caretaker of all. And for the first time in 4.5 years, I know something with 100% certainty. For that I am eternally grateful. In light of everything - how could I possibly stay sad for long? I can't and I don't.