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.



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 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 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 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


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.

Wednesday, March 19, 2014


My reasoning for keeping things general when it came to my mom and Gary was many-sided: to protect, to carefully work through the feeding issues with my mom, but there was another. And in the later months, it trumped all. My uncle and aunt had planned an entire trip to Europe with my mom and Gary in mind. While my aunt and uncle travel constantly - my mom and Gary almost never go anywhere. This was to be their first trip to Europe - my uncle and aunt were looking forward to being their tour guides. The trip had been in the works for a very long time, and as the weeks progressed, this say, 21 day trip somehow ended on a 44 day adventure!


As the calendar counted, we moved along. Exhausting all viable options, even blending Aviana's food and feeding it to her through a sippy cup. As with all things, the novelty was wearing thin. I began to grow more anxious by the day. 

The research was finished. I had spent months assessing Aviana, and my findings were true and just. My eyes, ears, brain, and especially heart had not deceived. Dave and I were a united front. Our meetings were full steam ahead. My talks with God, Uncle Roger, Aviana, and myself were all in unison. I knew full well the direction we were heading. I understood what this meant.

I started off slow - one here, some there. I began dropping hints to my mom. We had some really good conversations about Aviana and her feeding issues. I made sure to always note that the problem was intensifying. My mom suggested we simply put the tube back - an understandable solution at this juncture. After all, we were so many years into this all too status quo of a life.

I took one look at Aviana on the couch, took a deep breath, and drew every bit of strength I needed to continue. I can't lie though. With the sound of my mom's voice on the other end, the butterflies were flapping about, my voice doing its best to steady itself. I first took the opportunity to once again refresh her on our stance as a family. She came back with her best to understand what that meant, but I could tell, she was scared and some denial started to creep in and possibly take over.

How could I blame her? When needed, we have all jumped to what works for us. We all use our own unique strategies in order to deal with such a tragic situation. She then told me, "We need to try harder to feed her. Bring her to my house. I'll feed her, even if it takes hours. I have the patience." I wanted to cry, but I didn't, that is - until after I got off the phone. I gently explained it wasn't about that. Soon after, the subject was changed and shortly thereafter, she made it clear she wanted to call it a conversation. That was good enough for me. Baby steps.

As Aviana's refusal over meals was picking up the pace, my baby steps turned to leaps of reality (or so I thought). One time my mom finally came straight out and asked, "So are you telling me she's going to die?" My answer back was delicate and through tears, "yes." In retrospect, I really thought we were making much more progress than we actually were. I now understand that two people can really be coming from two completely different places and thinking two completely different things. All along, I thought she knew more of what I was saying - that it would be soon. And she thought it was off sometime in the distant future. I could see her point of view. Honestly, you have to say what you mean, and mean what you say!

Everything was mounting, one atop the other. My family was to leave on October 7th. October 7th!! So with the unbelievable timing of Aviana suddenly hanging in the balance, panic started to set in for me. I didn't know what to do. I had no idea at the time how this would all work. I felt as stuck as stuck could be. Do I tell my mom and Gary and destroy the trip they had planned for such a long time with my uncle and aunt? This was to be the trip of their lifetime! And after everything they'd been through, I couldn't think of anyone who deserved it more. They were all looking forward to it. Actually my mom was a little nervous, but still. For me to take this away felt wrong on every level. But would they prefer to stay and spend that time with Aviana? Or maybe after everything they'd been through with the accident, they couldn't? Should I tell them and let it weigh heavily for their entire trip? Do I go against Aviana, and continue to force-feed her until they get back? Then once they got back, we would give them time with her, and continue on? Gosh, we've been force-feeding her for years, what's another 44 days for them to have their trip? At this point it just felt wrong thoughbecause once you know, you can't unknow. To force Aviana to eat one more day felt awful! I felt like I was between a rock and a hard place My head was about to blow off from the added stress.

More than thinking about the trip, I was worried about my mom and Gary's mental state. What is the best way for them to go about losing their granddaughter - the love of their life - for the second time! Should they be here, or there? Should they know now, or later? Is it best for them to be in another country, or not? Are they going to want to be holding her and watching her die, or not? Gosh darn it!! Should I have just told them everything from the beginning and let them decide? They are adults! Why am I trying to control this whole situation? I thought I was over control issues : / Oh yes, to protect them from pain. But, I might die from this myself! After all they've been through will they survive this? Or will this be the end of them. Will the feeding thing push my mom over the edge? Will it be the final nail in her coffin? I felt I could somehow have it both ways, but how? I would wrack my brain by day, and night. I had the whole Aviana element all worked out, so somehow, someway - I could work this out too. I was torn every which way and everyday. Most everyone had a different opinion, or could see both sides on the matter as well. It was insane.

Typing this right now feels insane. I just wanted to make it all okay - to take any sort of pain I could, but I now realize, there was nothing I could do. The pain is the pain, the hurt is the hurt and it sucks all the same - no matter how you try and shelter or control it for someone else. 

All I do know is I continuously swirled the same questions round and round, "What are the odds of the timing of this trip?? They never go away!! Can you believe this?!?" Had it not been for the trip, everything would have just come naturally.

To be continued...         

Monday, March 17, 2014

Handle With Care

Most things are all mine to tell, some are not. Some things take time and permission. Not only time in waiting, but the courage to finally ask for permission. Some of the topics I write about are so incredibly sensitive. This particular one is no exception.

My mom has always had a love/hate relationship with my blog. Hate is too strong of a word, maybe dislike is better. The latter stems from a few things. She's of a certain belief, and doesn't think I should share nearly as much as I do. I also write some very painful posts about the one she loves more than anything. I can't count the times I've told her not to read. But my statement is always followed with an emphatic, "I have to!" That one's a glutton! For sure. I swear she reads with one eye closed - all the while, bracing herself. She recently told me she learned to never read at night. She now knows she won't sleep if she does. Her new and improved strategy - she reads in the morning. That way, she has a full day to process. 

While those who know us personally are familiar with almost everything towards the end, everyone else is missing one small piece. I've felt this piece is very important. I suppose my mom does too, because she immediately agreed when asked if it was okay for me to post about. I wanted to share with you all along, but everything was so unknown and heightened at the time, I thought it best we just get through and see how we all felt at a later date. 

It's going to take some time and just a couple posts for me to unfold. I'm sorry. I can't stand when people do that. You know - say something but don't actually say it all right away. Other than one super sized post (and I so don't want to do that!) I can't see any other way...


It's one thing to have to hear the words, internalize, process and do what you must with them for yourselves. It's a whole other when deciding the release of those all too delicate words to others. Every detail of not only when, how, and where, but also with which words must be carefully planned in hopes of minimally shredding, already shredded hearts. A tall order indeed. 

Since the day of the accident, I have especially taken it upon myself to always protect my Mom and Gary. An attempt to guard their hearts. To at least try to soften each blow. As we can only imagine, they carry an astronomical amount of guilt over all that happened. Try as we might in asking them to release any - they never will. 

We were all on the same page in regard to the trajectory of Aviana's life, but the actual conversations were always difficult. It's hard to love someone so much and then voluntarily and actively have conversations about letting them go. Even when you know it's right. I'm sure there are many out there who have been in similar shoes and can relate. Ugh, I'm sorry to anyone who can relate!! 

My mom always wanted to accompany me/us to all of Aviana's appointments. The one with her new pediatrician was without exception. I made sure to prepare her, in advance, and all about Palliative Care. I explained this particular appointment was going to lead to a request. 

I had asked my mom if she could take Aviana out of the office when the time came because I wasn't ready for little ears to hear talk of it yet. My mom happily agreed, as I don't think she was quite ready either.

As you may remember, in our actual Palliative appointment, we soon learned of our feeding option.

At this point, I realized not only was I trying to protect my mom, but was honestly afraid of her reaction to the feeding issue. You may remember, her world revolves around feeding people. It's one way she shows her love and affection. For this reason, amongst others of my own, I initially felt sick from this appointment.  

From this point on, we tried to keep things general and avoid overly detailed descriptions when it came to my Mom and Gary. As in - I would research, we would continue going to appointments, but above all, we wanted to make sure it was something that would come about. Once we knew, we had some serious decisions to make about telling my Mom and Gary. There were still quite a few obstacles up ahead

The difficult part was, I tell my mom pretty much everything! And all who know me know I share pretty much everything. This was weighing heavenly on my mind and just about ate me alive. I couldn't let it out though. At the time, I knew I was safeguarding all of us. I felt it was in our best interest to withhold. 

But gosh, I can't tell you how many times I waffled a day. But at the end of the question, and deep down, I always felt I was doing the right thing.

Thankfully I had so many others to talk to, and help me through in the meantime. There are not enough words in every language to express how grateful I am to everyone who stood by me during that time. I'm a lucky girl. 

Aviana is and was everything. I needed to be really careful with how I handled every aspect...especially with how this all began, and how it could potentially end. 

Monday, March 10, 2014

I Hop

Do you remember the game Frogger? Well as a kid it was one of my all time favorites. Lately that little to and fro, side to side, yet methodically thinking frog reminds me of someone. The parallel lies between the game and my posts.  Not so much in a speedy sense - but more in the back and forth, trying to get my little frog self and stories home nature.

I have so much to say - too many posts to count. The only thing I can come up with is, in the time of actually realizing we were going to lose Aviana, my writing mind went on the fritz. Meaning, the wheels were/are in full swing, but connecting it all takes extra time and attention. And time and attention is something I sometimes really have and want to give, and sometimes, I really just don't or can't - for a variety of reasons. I hope that makes sense? 

I have posts, old and new. Ones I want in chronological order, and others to stand alone. Some, which reflect how I feel now, and others pertain to then. Some that got lost in time and space, but still linger. I have some I held so very near and dear to my heart, and for that reason, you tend to see them trickle from time to time. I have questions you've asked, which I have yet to answer - not because I don't want to - but because the subject matter takes time for me. In all, they will find their way...

So, I hop. And I thank you for staying by my side as I do.

I picture myself as a kid, Atari joystick in hand. Strategically navigating those frogs. Trying my best to get them across, and home safely. I had not a clue that game would still be relevant in my life - some 30 years later!   

Sunday, March 2, 2014

Like Mice

The thought haunted from time to time. Grimly shaking its chains. Knowing full well of my strengths - wheelchairs, boots, and other binding apparatuses - but capturing my grave weakness in another area.

At first fleeting, "twice is too much." As time ticked this single phrase became an echo. But then, the memories, colors, her, everything - flashing. Vibrantly soft, yet searing. My mind was ablaze. She, in polka dot pink and denim blue - innocent and beautiful as ever. The echo was no longer. But now a wave of reverberation. Reflecting through every cell in my body. "Twice is too much." 

Flashes from the first gain momentum. They mix with the impending days ahead. Try as I might, I hold her but can't shake the thought. Stitch by stitch, item by item. Holding on, letting go. Often times when I look to the horizontal and vertical - to the drawers and shelves - I can feel my chest tighten, my back teeth clench. Convincing myself,
"Relax, breathe. It will all be okay." 

I was confused, because I'm not sentimental about these sorts of things. So after all these years, I could never quite put my finger on exactly what it was about her little shirts, skirts, dresses, and pants that drove me.  Writing is much like dissecting my brain. I realized in putting this post together - it had nothing to do with the clothes, and everything to do with the bond Aviana and I forever had over two things: clothes and books, books and clothes.

When all was lost from beginning to end, we always had the two. The two always brought us together. Impossibly close. When I couldn't bond with her in the beginning, we found each other in Skelly the Skeleton Girl and jean dresses. After we found each other, but lost ourselves once again (in many respects) due to the accident, those stories and outfits became even more important. When there was almost nothing I could do or buy for her because of the accident - I could once again rely on the two. They forever brought us together when all else was lost. They created another world for us. A world which was right, when so much was wrong. 

So it makes perfect sense how I was able to clear the house of almost all other things, except our favorite books, and of course her clothes. 

As time went on I was given the gift of complete concentration on Aviana. The best part was an overwhelming sense of calm in order to be fully present with Aviana for every moment of her last days. As part of this, I was able to let all other aspects which were previously pulling - fall away. What I was given was beyond me. It was much like an out of body experience. I thanked God constantly (and still do) for allowing me to feel everything, but not let it take me over and under. 

I learned a long time ago that I haven't a clue how I will react until I'm actually faced with a difficult decision. This was proven once again while Aviana was in the very last stages of her life.

Time had gone past what we'd been told to expect. Often times while Aviana was asleep, we tried to keep ourselves (mostly our minds) occupied. One night, we decided the time was right. Our thought process was simple - it would be easier on our hearts to pull her clothes together while she was alive, rather than after she passed. 

She was asleep in the farthest area from her room. So like mice, we gathered and lovingly folded every last piece of her clothing. Not to put too much time and attention on any one single item. And for God's sake...making sure not to picture her in anything, which was near impossible. This undertaking required a little speed, a light mood, but especially quiet so as not to wake Aviana. The last thing we wanted was for her to hear one peep out of us.

We did our best to keep our thoughts a world away from exactly what we were doing, but how? The most difficult part came when the closet was stark white and empty - just as it began...7 short years prior. It felt like the end of an era.

That's when the tears came...

And just kept on coming sporadically as we bagged all of those adorable little pieces up and finally placed them in the back of Dave's car for a donation to Goodwill set for a later date.

Not too long after Aviana died, we drove all of her clothes to our local drop off point and gave them away. While it was a little sad when we let them go - it actually felt really good.

In all reality, the second time around wasn't as hard as the first. This time, we let those clothes go with a peace in knowing - something we didn't have the first time.