Friday, April 18, 2014

Going Back

Today I want to thank you  - for the love, the well wishes, and every single beautiful word you string together. Thank you for just plain being here. I truly appreciate. 

It's been interesting lately. Writing about then can sometimes be challenging, because we are now in a different place. Many times, in order to change it up, I wish to weave in the now! I refrain though. I am finally able to share it all here, so I'd love to finally place what's been inside - out. I understand the alternative, and it caused me to become seriously stuck, writing wise. When I start to wiggle about these then posts, it's important for me to stay focused and remember that within a journey - where we are - can be better understood by knowing where we came from. Thus, the essence of order. 

I sometimes slip. While at lunch with my uncle, I explained how at times this, writing in retrospect instead of real time, could be frustrating. It would be different if I were all caught up. But since I'm not, it can be difficult to go through once again, but with new details. The posts are awfully heavy and can sometimes linger because, often times, I'm feeling so much lighter. There isn't a break in the process, but by choice, of course. He brought me back, as he so often does. He told me it could be a good thing because I've had some time and distance and can now reflect on everything. He's right. It's something I chose to do. Something that is crucially important to me. Something I wouldn't have any other way, albeit difficult at times, but necessary in sharing Aviana's story. I have since relaxed into the process and however long it takes, it takes.  

So today, I want to thank you for being patient with me. For going back with me, for letting me share some parts again, while adding much more. Thank you for being here to help me process all that's inside. Thank you especially for every word in support of my mom! 

I'm not so sure she believes any of my recent dagger posts are helping though? After every one, my phone is sure to beep. I brace myself for her text, "tears, tears, tears...just too hard to go through it again. My heart is like STONE...." or "CRYING...TOO DIFFICULT." I call her and that sweet voice asks, "Are you done with me yet?" She doesn't know all that happened. And what she does know, she's either forgotten much of, or has blocked it out. I know it hurts my mom incredibly. It hurts me too. It leaves a lasting effect sometimes. It's not my intention to inflict more pain. I wouldn't continue through if I didn't think it would help in the long run. In my heart, I think it's best to walk through it, to understand what happened, and to know what it was really like. I just think to know is better than to wonder, or not know at all. Your imagination can be your worst enemy, especially on a sleepless night. I also think to know is better than to forget. I don't think you ever truly forget. I believe it all comes back to you in one form or another. 

I personally want to remember as much as possible. I feel I've already forgotten too much. It makes me sad. I honestly didn't want to miss a thing - the good, the not so good, the sad, all of it. Yes, it was hard, but I knew it was going to be over soon. I knew it was all I had left.

I think the end of Aviana's physical life was just as important as every other part. There was beauty in every single stage, and to deny any portion is denying a piece of her. And for me, her life isn't over, nor will it ever be. She lives on in every moment of my life today. I feel her in everything I do, and everywhere I go. She's a large part of many decisions we make. She's right here with me. I'm grateful too for the ways in which she lets me know. We were attached, and she let's me know I am not alone. She was one of the most beautiful things I will ever have known. As tragic as her story could be at times, in knowing all, I believe chronicling her life also brings about a sense of peace. It's a story of loss, yes...but above all, it's one of love. True love. And my mom, well - she was by far one of the main characters.




Tuesday, April 15, 2014

It Was a Saturday

When I walked in, I knew. I could tell by the sound, by the stillness. You were gone. Finally, you were at peace. For you, that's all we ever wanted. From the moment I laid eyes on you, I knew. As hard as anything could ever be, it would never be as hard as it was.

Peace in knowing. Those are simple words to say, to write. But to feel them is an entirely different experience. At that very moment a whole new life began for all of us - albeit separate, always together. Yes, it was going to be a different kind of life, sometimes difficult, but overall for the better.

It was a Saturday. Our baby died on a Saturday. It was dark outside. We still needed to tend to things we never thought we would. It was okay though. Luckily we were handled with such care beforehand.

As Aviana lie in her bed, and we waited for Hospice, I made a few calls to my Uncle Roger, my dad, my brother. Through all the calls and in the back of my mind, I wondered, "Could I catch my mom and Gary in Croatia? They are nine hours ahead. Would my email reach them on land? What am I going to say? How can I possibly find the words to accurately convey this feeling?" I really couldn't tell many until they knew, so I was hoping the email would find them. The last thing I wanted was for them to hear the news from anyone other than me. While we were waiting for my mom and Gary to find out, I remember Beverly from Hospice advising us to enjoy the time we had together. She really understands everything important about this life. She's a true gift. They all are, really.

Dave and I walked around. We hugged. We talked. We walked some more. It was honestly surreal with Aviana in her room, yet in our eyes and beliefs, not at all.

The sun had risen. Hospice arrived. She pronounced her.

***

From "The Dress"

"Dave and I believe once someone dies, their spirit is gone and their body is a body. We respect that body though, but just as we thought, it was more difficult to change her back into the dress afterwards. It was okay though.

We wrapped her in her soft, polka dot blanket, handed her to the two gracious men in our front entry and watched them lovingly carry her down our walkway. They got into their van, one holding her while putting his seat belt around the two of them, and the other in the driver's seat. Down our road they drove.

We were lucky enough to have a wonderful Hospice social worker who made a request for a two person transport and a mortuary who had never once heard of this, but wanted to do anything and everything to make it easier for a family who was about to lose their 7-year-old little girl. The people who make the world go 'round never cease to amaze and inspire me.

And the way we chose was like the day of the accident. I felt it would provide closure for hearts which could never before truly find any. I watched Aviana's vibrant being toddle down that walkway and drive out of my life once before. And now, we watched her leave our lives for the second and very last time…at least physically. But this time, she was off to once again be that spunky, sweet, glowing, grinning girl she was meant to be!"

***

After, we weren't sure what to do on a day such as this. Dave asked if I wanted to take Rainey to lunch and for a hike in Auburn. Nothing sounded better than getting out and away, especially the three of us, together in nature.

Everything felt indescribable. Leaving our house without Aviana. Driving without her, but forever this time. I kept looking back, attempting to grab those little feet, only to realize - never again. That day it wasn't sad, just strange. There was actually a good feeling along with the realization. As we drove, our surroundings seemed amplified, the colors much richer. The sights and sounds, as though they had a pulse.

We decided to first walk down to the Auburn Dam. The sun was shining, the sky blue, and the clouds - perfect. The forest was alive. The birds, with their outstretched wings, were gliding up above us. Everything was beautiful. As the wind blew, I could actually feel Aviana's spirit dancing on the breeze - so light and free.

As we walked our path, I suddenly wanted to sit down on the ground and take it all in for a little. I looked to see what pants I had on before finding a seat. I stopped dead in my tracks, my eyes staring in disbelief "I never wear these pants - not ever." But this day and without thinking, I had pulled them on, almost the very same ones, but with the pink stripes. I looked at Dave and said, "There are no coincidences."

The day we put Kama to sleep (exactly three years before) I had wore the same pants, but with the white stripes down the side. The pants have never been washed and still sit folded on my top closet shelf, covered in her fur. Because I was so out of my mind that October 26th day, I didn't even realized they were up there. I was going through my closet to gather for Goodwill a few years later and wondered what on earth those pants were doing up there. I pulled them down, and saw Kama's fur all over. My face hot with tears, I immediately lost my breath. I was easily in one of the worst ways possible.

Never had I really believed in signs before Kama died, but thankfully they came fast and furious after she passed. I was almost hyperventilating at the sight, the feel, and the thought of that day. I instantly remembered all our last pictures together in those black with white striped pants. I remembered all our last moments. And as my music always is - blaring - this song immediately broke through, just for me. From her, from whomever is up there, from both of them.

Flash forward three years to the day. When I looked down and saw the black with pink stripes, I couldn't believe it. But then again, I could.



As we made our way to the dam, we came across a few of my very favorite little guys. I was afraid we would never be able to move past them because I kept following them with my camera. They were really tolerant of my antics. I think they knew what had happened that morning.




We went to downtown Auburn afterward for lunch. One thing we didn't account for was the courthouse which is in the heart of downtown. This is the place we took Aviana to become a U.S. citizen. It was a very happy day after all we had been through with infertility and the adoption process. Even though we'd been around it plenty of times, and since the accident, it seemed odd to be right there on a day like that. 

Overall, it felt kind of like we were in a secret world of our own, yet surrounded by everyone. As we waited for a table, interesting didn't even begin to describe listening to normal, everyday conversations on the day our daughter had passed on. What I found most fascinating was - if they were listening in on our conversation, they would think nothing of it either. I decided to go shop in some stores while Dave and Rainey waited for a table. Everything felt strange. At lunch, when the hostess and server asked how we were and how our day was going? The real answer was, "Good." But, in secret and in the car later, we laughed at if they only knew, or how strange it was that Hospice and the mortuary were just at our house that morning. 

Throughout my entire time with Aviana, but especially since the accident, what always stirs about is how I really don't have a clue what's going on with anyone. Whenever I look around, I often wonder what people in passing are going through, have been through, or even...will go through in the future? It's always something for me to feed on.
  



My Aviana pants. 




Once home, I folded my Avi pants and placed them over Kama's. I stood back and thought to myself, a physical representation of the beauty that happened today.

That Saturday morning Dave had one picture in mind, one he had to find, one that meant so much to him. This picture still sits on my desk every day, right in front of my keyboard...




It was a Saturday, and for you...we couldn't have been happier.

 

Tuesday, April 8, 2014

Dear Mom & Gary -

October 26, 2013 - 8:01am

There are things that happen in this life that are much larger than us. I've seen these on a smaller scale, but what I've just witnessed leaves me almost speechless. A plan for our family was meticulously orchestrated, and we were merely the characters playing the parts. The question is was it by Aviana, God, or both? I believe the latter. These words are some of the most difficult for me to say to you through this medium, but I must. Aviana is gone from her broken body here on earth and is now up above doing all of the things we so loved to think of, remember, or wish she could do. She is no longer bound by that body which couldn't. She can. She is free to do all she once could.

Aviana increasingly refused more meals until she stopped altogether. I wish I could accurately express to you how peaceful of an experience this was for us, but I never will be able. Our time was sacred with her. She was so relaxed and no longer the tight, tense ball we knew her to be. She was free of the 4+ years of seizures as well. We spent all our times wrapped up in her; reading, loving, laying, walking, and taking her to the park. It was the most beautiful time I've ever experienced. She was attentive, focused, and alert all the way until yesterday. That is amazing in itself! Her entire journey has been amazing. I wish so much you could feel an ounce of what I feel. Not just hurt... but peace for her.

Why am I in such awe and wonderment about everything around me though? Because when she refused at a steady pace, my thoughts were of Kama, her best friend. The one who was there for her always, even when I couldn't be. Is Aviana trying to join Kama on the anniversary of the day she left us, October 26th? No, that can't be...it's way too far away. I brought it up early on to Hospice, and they agreed - too far away. But no one should doubt our little girl when she makes up her mind should they? Anyone who knows Aviana knows that. As we know, Aviana has her own agenda, so she had been planning and proving everyone wrong along the way. 

Today she has gone to be with her best friend Kama. They both left us at the age of 7, both on October 26th. She is running, smiling, jumping, and playing with her, just as she used to. She is free, free to be who she's meant to be.

Please come together now. You need each other. Be good to each other. Keep your minds on all the reasons why Aviana needed to be set free. Why we needed to respect her wishes. Why it was selfish for us to keep her here. We no longer will have to put her through anymore surgeries. Please support each other through this. Stay calm, breathe deeply. Think of Aviana. She would want you to be well.

We don't know why some people are here only for a short time, but what I do know is her life must be used to teach. I have learned a million lessons from her and will never stop. Let's be grateful we had her here while we did. She's a true blessing to everyone she touches. I was not kidding when I said all was fine and still is over here. She, God, whomever, has brought a sense of peace and a state of calm to our household. We are okay and you don't need to worry. I have been praying the same be extended to the two of you.

Please let me know when you get this. I want you to hear it from me first, I will then tell others. You can FaceTime me on wifi if you want. Open the app. on your iPad and dial my CELL phone number. It's free. I'm sure. Or just call if you need. Who cares right now, right?

I love you both so much and we will be okay, I promise. We can make it through anything and this will make us stronger. Mom, especially you (I have a feeling Gary knows) we can begin to heal now. Our girl is FREE... she is FLYING!!

Our Love,

Jen

P.S. When you look up at the sky tonight, the stars and the moon, and the beauty...you can think of Aviana! She's everywhere! She's free! 







Monday, April 7, 2014

Across the Wavelengths

Some things are good in theory, but are definitely more difficult in reality. 

Our last days with Aviana were some of the most challenging our lives would ever see. But at the very same time, we were making a conscious effort to be present and enjoy every moment we had left. 

The emails from my mom, and in regard to Aviana, were superficial. We understood why. She would tell us about her trip, and then, always made sure to let us know just how much she missed her baby. She sealed every one with a big kiss, and a "Nana loves you!" My mom made absolute sure though to never include a question mark anywhere near Aviana's name. We followed her lead and responded in kind. We understood. They were guarding their hearts, and bracing for the worst. 

Suddenly we realized Aviana was really going to die. Later came another realization - I had glazed over the "how" in how I was going to tell my mom and Gary. No matter which way I sliced or diced, all I came up with was an email! I would repeat it out loud. AN EMAIL!! How the hell did this happen??!? How did I let them leave without a better plan? I hadn't thought it through. Nope, not even close.

I had no other choice than email. I needed a chance to get everything out in written form. I couldn't chance a bad connection. I couldn't chance getting the main words out, and then, being disconnected without them having details. It was time to know. They had to know just how peaceful everything was. They had to know Aviana wasn't in any sort of pain! They had to know in death, just how beautiful she was. They had to know just how perfect our time was together. They needed to know that we were okay; Aviana was much more than okay, and that it was going to finally be okay. They needed to know there was beauty. Yes, beauty! Most of all, in that moment, they needed to feel the love of their family, even if it was across the wavelengths. I needed them to feel the warmth. I needed them to have something tangible. Something they could read and re-read over and over again. A disconnected phone call, or even a frantic one would too easily be forgotten and they would be left with nothing, nothing but broken, incoherent thoughts. Once they had the email, and in their own time, a phone call, which could then run the risk of being severed, was fine. 

But suddenly, a colorful vision stuck in a loop. These two grandparents, who just recently learned the ropes of somewhat navigating a foreign country, hop off the boat for the day, find a cramped Internet cafe, open their email (surrounded in tons of other people), and read words they wish never to have read. I wanted to be there. The thought of them alone, in a foreign country... made me sick. I could actually see them in front of the computer, crying in front of all those people. And then, walking out dazed and confused. I felt sick to my core. 

I tried to think of every way around, to soften the blow, but there was nothing. In one of my deepest moments, the phone rang. It was Beverly from Hospice. I explained, "better in theory, than in reality. I feel sick that not one of us will be there to catch them when they fall." Beverly is pure heaven on earth. She appeared when I needed her most. She said something I will never forget and also revert back to and will for the rest of my life, "Jen, maybe for the first time they won't have anyone else there. And maybe for the first time they will have to catch themselves and each other." We talked for a while after. She always had a way of clearing and making a path for everything that had previously been cluttering my way.

 I hope that when I die, I have Beverly, or someone exactly like her. Our Hospice team was the absolute best. From our conversation forward, I was once again able to fully concentrate on Aviana... until.

Wednesday, April 2, 2014

And They're Off?

My mom called around noon on October 6th. They were to be picked up by an airport shuttle at 3am on the 7th to meet Roger and Rella. When I answered, she said "Roger was in an accident. He's in the emergency room." I went cold, but tried to stay calm. "What happened? Is he okay?"

My uncle's son was running a half marathon called the Urban Cow. My uncle is a life long athlete. He's one of the most active people I know. You may remember he and my aunt walked the Camino de Santiago last year. Yes, all 500 miles. It was nothing for him to ride his bike to the race and follow the pack of runners in support of his son. At the end, he congratulated him, stayed and talked for a little while and then, left for home.

The day before had been exceptionally windy. As Roger was on his way home, a branch of some sort caught in his spokes, and immediately caused his bike to stop. He went over the handlebars - landing on his head, neck and back. Thankfully, he was wearing a helmet, which after protecting his head, cracked open. But in addition to a bruising his head, he fractured three ribs, and broke his back.

We were in disbelief, stunned really. It was a freak accident, given the fact that my uncle rides in the dark, on levees, at high speeds, and all over the place. We weren't strangers to this kind of accident at all. We were very familiar actually. We knew they could happen anytime, and any place, but we were shocked that he was hurt, and just hours before they were supposed to leave.

So many thoughts flooded at once. I remember feeling so very sad my uncle was in an accident, but grateful he was alive. I remember feeling sad for his back injury, but beyond thankful he wasn't paralyzed or brain injured. I remember feeling conflicted - wanting to leave and go to him right away, but also realizing I needed to stay where I was. The worst feeling of all came next. I thought of how my uncle had always been there for me, for us, and knowing I wasn't going to be able to reciprocate. This was truly one of the most unsettling feelings. It's a feeling I've come to know, and often times, begrudgingly and to some degree, have had come to terms with since Aviana's accident. But in that moment, it all came full force, and it was excruciatingly painful. I knew though, of all people, my uncle would understand and this was entirely on me.

In the meantime, my mom and Gary had to make a quick decision - whether to stay or go to Europe without my aunt and uncle. They had never been, hadn't planned the actual trip, and didn't know much about traveling, especially in a foreign country. If you know them, the thought of the two together (without a buffer) on a boat for 44 days is humorous in itself. Dave, my dad and I had a similar thing happen with our trip to Paris and Amsterdam and it all worked out. And we were on foot, so we were all for it. Pretty quickly, they decided they were going for it! I thought they were quite brave, especially in spite of everything : )

After a crash course of Euro 101 with Rella, we wished them love, good luck, (a don't kill each other) and they were off!

My aunt was amazing in caring for, and updating us about my uncle too. We continued to hear he was doing well, of course he was. My Uncle Roger is one of the most inspiring people I've ever known. A broken back, cracked ribs... I don't think so. They couldn't keep him down. As we were trying to find a day to visit, he was already adding up the miles in his back brace. While the miles were nice, the back brace was most certainly not! He was to wear the body brace for three months! He was only allowed to take it off when he slept. In addition to the heat trap, he had to wear a soft neck brace whenever he was moving, like in a car.

There were definitely things to be down about - the overall accident, and all its ramifications, missing out on my mom and Gary's first trip to Europe, knowing Rella missed the trip as well, knowing he wouldn't be there to help my mom and Gary through with Aviana, and a host of other things - but in true Roger fashion and the quality I find most admirable about my uncle is, he always finds a way through and quickly. He doesn't dwell. I love that! And, the times we are with him, we're always greeted with positivity, a healthy attitude, and never a complaint. I say it often, in many ways he's a living, breathing example for me. Thank you Roger. I love you and I'm grateful you were saved that day!

Monday, March 31, 2014

Saying Goodbye

My mom and Gary were keeping busy getting ready for their trip. We knew there were still a few things to talk about before they left. I felt the nerves creeping once again. Who wants to continually have conversations in this same vein? By this point, I felt I'd had my fair share for years to come. I wanted to just keep my mouth closed and take in what life was left. The few remaining details screamed loudest and largest though. Our hope was to keep them short and sweet.

My mom was over, so I weaved some of what was left into our conversation, "If something should happen to Aviana while you are away, what should we do?" The answer she started with wasn't what I expected. She began telling me how to handle Aviana. The tape in my head repeated, "say what you mean, mean what you say." I half smiled and quickly rephrased my question, "I didn't mean the details of Aviana. What I mean is, how should we handle you and Gary?" My heart stopped in anticipation. Not because she didn't answer, but because of the question I had to ask, and the response she was cycling through to come up with. 

As I waited, I was rushed by all the moments, which brought us to this very one. We three sat on the couch - mother, daughter, granddaughter. We were talking so naturally, but yet suddenly, about something so unnatural - losing a child. Those were the most, and least, of my thoughts in the few moments it took for her to say, "We would want to know right away." She then asked how my Uncle Roger answered? I told her he also wanted to know immediately.

***

(This part can't be written without too many tears to count)

Staggered and a few days before they left, my mom and Gary, and my Uncle Roger came to our house. We tried to keep the visits as normal as possible. If my memory serves me correct, we didn't act as though this may be the very last time they were ever to see Aviana. We honestly didn't know for sure, but I believe we all had a good idea. By then, Aviana was consistently refusing 1-2 meals a day. She had also lost a decent amount of weight.

I think we'd all had enough heavy, because we tried to keep the conversations light. They spent their time hugging and loving on Aviana. I'd catch my mind wandering, sometimes capturing mental pictures of the two, or three of them together. I imagine we all experienced some of the same. By now, our behavior became an unspoken agreement in keeping it to ourselves. We all knew where we stood and the direction each was heading. With the seconds counting down, I think it was easier for all of us to act in this manner.

 I'll never know which was hardest - seeing them tell Aviana they love her and kiss her one last time or watching them walk away, and then scooping her up afterwards? I guess both were equally difficult. 

All I know for sure is - each time that door shut, I held Aviana and cried like a baby.

Saturday, March 29, 2014

In Response

I received this comment on my most recent post called, "For the Best." I really appreciate the love and support for our family from those who commented afterwards, but really, it's okay. Dave and I both feel the very same way we felt upon receiving a few similar comments a few months ago. It's just another reminder of why we choose to share the feeding aspect, along with the truth of how Aviana died.


Comment


Hi,

Although I enjoy reading your post, I just can't understand how anyone can justify allowing a young child to starve. I know it was tough and heartbreaking for all of you, but to think that a brain injured child can make a life changing decision to stop eating is something I just don't agree with. I'm wondering if this was agreed to by doctors as the way you write about it to me is something close to assisted suicide. Not sure how anyone could consciously watch their child starve over the course of weeks. It must be very difficult to live with the decision you made on a daily basis.





My Response



Hi Anonymous ~


I previously had a few people comment that felt similar to you. I responded to their comments with a few posts, not in hopes of changing their thought process, just in explaining further. I understand we have completely different views on the matter, and that's okay. I have no reason to justify ours as a family, as we feel completely at peace with the decisions we made for Aviana. The sole reason we choose to share our journey in its entirety is for one main reason. We share for any family who's found themselves in a situation like ours, and with a child who is refusing like Aviana. 

I understand and actually do respect your opinion, but it's definitely not, nor ever will be mine - for my family and most certainly not my sweet, loving daughter.

Of all the things I've accomplished in my life, or ever will in the future, I'll die knowing I did absolutely right by, and for, Aviana. It's the one thing I'm most proud of. I say it to Dave often, "I'm so proud of how we handled everything from the accident forward, but especially in the end." And guess what? I'm not one to pat myself on the back. But we did it! We worked like never before, were ridiculously proactive, saw everything for what it really was, tried to have a good attitude throughout, did what was needed, and in the end - it was as beautiful an experience as could be. Best of all, Aviana was pain free and peaceful. Furthermore, we learned everything from her and carry every bit, in every step we take. Who can ask for anything more? If life has to be this way... and I've learned it sometimes does, who can ask for more? 

I am most grateful everyday and every moment for our Palliative and Hospice staff - for without people like them - people like Aviana would continue to needlessly and endlessly suffer. And in turn, so would we...my whole family.

If you so choose...


Wednesday, March 26, 2014

For the Best

After leaving my mom's house, Dave and I were of the same idea. It would be best for my mom and Gary to go with Roger and Rella on their trip. There wasn't a doubt. In our opinion, the scale was not only tipped, but completely dropped in favor. We realized it would be best for not only them, but for us as well.

Our reasons were many. Because of their guilt, their love and of course, the loss. Because this would be too hard for them to see after all they had witnessed and experienced the day of the accident. Because my mom may be tempted to sneak Aviana a steak, or ten. Because they probably couldn't bear to see her wither away. Because they know my nature, and I would be inclined to divide my attention from Aviana and care for them as well. Because I knew they would be in the perfectly capable and loving hands and arms of my uncle and aunt. Because they desperately needed a change of scenery. Because they needed any and all distractions possible after everything their ears had just heard. And most importantly, because I doubted they were spiritually ready to let Aviana follow her wishes.

It was really important for everyone who was around Aviana during this time to be in a certain place. As hard as it could be, it was vital for Aviana to know we accepted her decision and that it was okay for her to go when she was ready. Aviana was awfully perceptive, so that didn't just mean by us telling her, but really meaning it, and feeling it. As in, our energy towards her.

Now I know this last part wasn't really fair to my mom and Gary, because they didn't have much time in getting used to the idea, but for all the other reasons, I had a feeling it was a good decision anyway.

I called my Uncle Roger first thing Tuesday morning. He said he'd just hung up from a long conversation with my mom. The short of it was they had talked about the two of them still joining in on the trip, but wondered how Dave and I would feel? Relief washed over. We were all separate in thought, yet woven together in what was right for all.

I was soon talking with my mom. She was hesitant, but I could tell it was on our behalf. Deep down we were right there with each other. I reassured her, making sure to tell her all the reasons why it was the best decision. She understood and agreed.

We suggested my mom and Gary meet with Hospice before they left for their trip. The people sent to us were most definitely the best of the best! We knew they would put my mom and Gary at ease. We figured they would feel more comfortable after seeing, talking, and asking every question they had.

My mom and Gary agreed and met with Hospice on Thursday. The meeting was really hard, but good. Gary swayed from slightly hostile at times, to extremely emotional. He was afraid of the timeframe, but leveled out after Beverly gently and calmly explained everything to him. Kudos to her, because I wasn't having any hostility towards my Hospice peeps! He asked a lot of questions and never hesitated in explaining every bit of what Aviana meant to him.

The saddest moments come when he speaks of how it all happened, his involvement, when Aviana went away, and what it's like for every one of us now. There are no words to describe it. I've never experienced tears, guilt and sorrow like his, my mom's, or the two of theirs combined. They are in a world of their own. Tied together...by a day, a moment, and a split second decision. One we all make and have no reason to revisit. One which, more often than not, doesn't have this traumatic an outcome. But on this day, moment, and particular second...it did. And so... many times a day, they are back on that damn street. They don't talk about it often, but during our meeting, they needed to, and did. When they decide to talk, all we can do is hear...and hug them.  We were coming full circle, and they knew it.

After Hospice left, my mom asked if it was okay if her priest came to give Aviana her Last Rites. She said she would feel much better just in case something happened while she was gone on her trip. My mom knows we are spiritual, but not religious. We both said, "Of course."

A few days later her priest arrived and gave Aviana, what I believe is actually now called, "Anointing of the Sick." It was really sad watching my mom, Gary, Aviana and the priest. The priest was a really nice man. We were grateful he came to our house and cared for our family during that time.

My uncle, aunt, mom and Gary were all packing up and getting ready for their trip. They were to leave in just a few days. Even though the core of my family was leaving for 44 days, I felt calm. Everything was finally out and all decisions had been made. Now, I could put all my focus on one and one only - Aviana.

Sunday, March 23, 2014

Finally

When and how? How and when? Someone knew. And when that certain someone knows, things happen. I've said this many times before, and will say it again - she never said a word vocally after June 17th 2009, but the girl spoke. She made things happen. She used mostly her eyes to let us know what she was thinking and feeling. As time went on though, and the urgency of the situation was waxing, she resorted to other measures - more desperate ones. Some I had only seen a few other times.

In the beginning, we had been sheltering Aviana from very end of life conversations, especially as they pertained to feeding. But over time we realized, she needed to know (as if she didn't already). We became really open and honest about everything with her. We no longer hid any conversations. From then, I noticed a shift. She really began making her wishes known. If things weren't going her way, she became despondent. Once she got what she wanted, she was back to her normal self. It was unbelievable to watch her in action, but very sad at times because she was trying to set the wheels faster in motion to end her life. 

It was a Monday; she had completely refused her breakfast, which at that point, wasn't out of the ordinary. I sat down with Aviana for lunch. She stared straight into my eyes and completely refused her meal. Her jaw, locked. I started to cry. In my head I knew what she was doing, what this meant. But in my heart, I was still only halfway there. I suppose I wasn't yet fully ready to realize, or see it. Feedings were a double-edged sword. I felt both happy and sad, both proud and confused. She had never refused two meals in one day. 

Her focus was directly on me, her eyes penetrating. My 7-year-old girl was clearly pushing me. Pushing her 38-year-old mom to do something she didn't want to. She was taking me there. She was so small, yet always acting so big. Time and time again, I found everything I needed in her. She's what drove me, what always gave me that extra shove in life. Every time I thought I couldn't anymore, she proved I could and would. She's what kept me going. Because she always could, so could I. She was once again telling me, in her own way, that I could and would. And the time was now. I continuously fed off her - no pun intended. 

I sat for a long time, talking with her. Asking her? I gently tried a couple more times with the food, just to be sure. Don't laugh. It's only natural. She defiantly turned her head. I cried as I told her, "I know baby. I know. I will. I am." I put her down and called Dave. I asked him to come home right after work. I told him all of what happened with Aviana, and how it was time to go tell my mom and Gary. I then called my mom and although I don't remember exactly what I said about coming over, I'm sure I kept it casual so as not to worry them.

I was really nervous on the way. I remember like kids reviewing for a test, I was frantically flipping through our Hospice notes, and going over all the main things we were going to say. When we got there, I told them we needed to talk. We all sat down in the family room. I believe we started with Aviana's quality of life. We agreed about how it had been deteriorating over time. We talked about her time in therapy, her time the previous year in the hospital, her liver, and her upcoming surgeries. We spoke of how much we love her and love to hold her, but how the most important thing is how there's barely any enjoyment in this life for her. We agreed how agonizing it is for all of us to watch her life, which is devoid of light. 

I then reminded my mom of our Palliative meeting and all that meant. Gary doesn't read any of my blog, so I asked how much he knew, which wasn't much. We went over Palliative, but this time we included what they said to us about the feeding option. I started to cry. Gary was stoic. My mom was in shock. I told them how we were just as surprised when they first told us and how I had spent all this time researching and making sure it was something we would pursue before bringing it to them. I explained all the reasons why it made perfect sense for Aviana in particular. Furthermore, and most importantly, I explained why we felt it was the most proactive, pain-free approach in letting her go. 

We also told them how we didn't want to wreck their trip, but the urgency had gotten out of control. They said they were canceling their trip. All was lost when I told them how Aviana was straight up refusing her meals. Two that day, which prompted us to come talk to them. My mom asked for some food in order to feed her immediately. I had to fully explain how we can no longer force her and why it is so important to honor her wishes. We armed ourselves with all we had learned on our own and through the help of our amazing Hospice staff. Oh yes, I forgot one small detail. By this time, we carefully let them know Aviana had transitioned to Hospice. My mom is always so worried about our protection as a family, so as hard as it was to hear, she understood. But the words were awful. They just are, no matter how you slice them - when heard, usually people think Hospice = Death. And boy did they. Gary was really upset, and asking when she was going to die? We had a whole conversation surrounding this.

By this time, my mom had grabbed Aviana on her lap and was holding, rocking her and crying. Gary was again unmoved. He spoke softly, but direct, "So you're going to kill her." I knew he didn't mean it. He was just so sad about the whole situation and knew he was finally going to truly lose his granddaughter. Sure enough, and soon enough, he completely understood and was right there, united as we had always been as a family. He was completely in line on the subject of quality of life as it pertained to our girl.

I could tell both Gary and my mom had thought these thoughts before, and understood fully. They asked a lot of questions, but I could tell deep down they always knew the day would come for this conversation, and here it was, staring them squarely in the face. They even recounted. They stretched their minds back to the previous week. They remembered how no matter what they said, or did to get Aviana's attention, she ignored them - stared straight through them. Aviana was trying to tell them, to show them. I explained that once they left, like a switch, she flipped and was back to her normal self again. Now they had to come to terms with what to do, and how to handle everything.

My mom couldn't breathe. She looked like she might pass out. Dave scooped Aviana up and out my mom went to the backyard for some fresh air. I soon followed. I sat and talked with her. We actually had a really good talk. She knew it was best for Aviana. We all knew it was best for Aviana. But as she rocked back and forth - in the very same manner I originally found her in the hospital so many years ago just moments after the accident - she said, "letting her go will kill me. If Aviana is gone, there's no reason left for me to live. You will all survive and go on, I will not. She's my whole world." I tried my best to continue talking to her, but how? So I stopped. She was about to lose her baby. Words are words. They fall short sometimes.  

That was enough for one night.

Friday, March 21, 2014

To Know

As I wavered, a definitive two stood out. I talked to one of my best friends, Jen. I explained everything. She listened to every word of my plight. We continued to talk, and then if my memory serves me correctly, she internalized everything and called me back not too long later. She said she thought I should tell my mom, and let her make the decision whether she wanted to spend the days of her trip with Aviana, or not - whether she wanted to be holding her for her last days, or not. She said if it were her own family, she felt she would make the same decision. She carefully, and lovingly laid out every single reason why. Hearing her voice, and every word was exactly what I needed. 

The reason is - we have the exact same relationship with our moms, and our moms have the exact same relationship with their grandchildren. I have always admired and trusted Jen's opinions. She is always looking from every angle - love, logic, and everything in between. She's also one who's concise, which is really nice. For the first time, my head felt almost straight in this area. 

I then talked to my friend Christie, and she also confirmed - if she were my mom, she would definitely want to know. I held onto her words as well.

No doubt about it, we are surrounded by some of the best people this world has to offer.  

We were soon on our way to Tahoe for the weekend. All I really wanted was to relax and enjoy spending some time with my dad, Dave, Aviana, and Rainey, but I knew there were more thoughts to think and decisions to make. 

I remember exhaustion covering every square inch of my body. No matter how much I wanted to, I couldn't repeat one word of what my ears had heard on the way. All I could do was sit and take in the sights and sounds on our accent into the mountains. I distinctly remember the amount of energy it took to finally send a small and simple message to my friend Jen, asking if she could either call Dave, or somehow relay what she had previously said to me on the phone. I was afraid my lack of energy would get in the way of my ability to properly convey every detail, or that I might forget something.

The next morning, we were lying in bed. I handed Dave my phone so he could read the perfectly crafted email from Jen. It all made sense. We knew she was right. Deep down, I believe I knew for awhile. I may have been too in it and also running scared. I really needed to hear it fully. Jen made the spinning stop. She calmed me and provided a renewed focus.


Thank you Jen. I love you.

***

But now, we were left with when, and how.


One of my very favorite pictures on one of our very last trips to Tahoe with Aviana.