Before I go into the other post, the post that's been marinating in my mind for a few weeks...I wanted to share some pictures with you : )
Amy's sister got married last weekend in Tahoe and we had one of the best times ever! I know this is a boatload of pictures, but it was too much fun, and too beautiful not to post a ton!
This first one is of really bad quality, but I had to lighten it to show you what was going on. Amy and I have a history of unintentionally dressing like eachother.
Dave and I were meeting her at the hotel, so we could watch her son Cooper while she went out on the lake with her sister, and ton of others.
When we got there, she met me in the lobby and wouldn't you know it ~ twins.
Bye Bye Amy, and all others.
It was so amazingly beautiful. The perfect weekend for a wedding!
Can you see her? There's a Ray in that deep, blue water. Dave took her for a swim while we were at the hotel.
After watching Cooper, we made our way over to my Dad's house. Aviana was really tired and fell asleep, with her head up...I might add : ) It was really funny, so I started snapping away.
After a week of making five other pies for the end of the school year, and other Fathers. I wanted to make one for my Dad. I was busy making one at this time!
And...there it went.
"I Love My Daddy Peanut Butter Chocolate Pie"
We took Aviana, and the dogs to the beach the next day. It was perfect.
What a beautiful, beautiful girl!
She was so tired. Two days of swimming in a row, and playing with Snoozy Boy for three days...oh my!
We then went to lunch, but Aviana was tired from laying on the beach.
I love her little fingers.
I never had too many pictures with Kama, so I'm now making it a point to get a bunch with Rainey. We had a mini photo shoot before we left.
I love this one of her. She has so many facial expressions. It's not very often you can actually see her, because she's so black. I love how you can see her little ears and all her white in this one.
Ahhh...puppy love. That's the sweetest, kindest, little face eva!
As you can see, they got married right on the water, on the pier.
Dave and Jill.
The happy couple.
They planned one of the best weddings we've ever been to and were simply, without a doubt, two of the most gracious hosts.
My mom told us to gets tons of pictures. As we were sitting at dinner, I realized we had forgotten to get even one of Amy and I. We had to make up for lost time.
I grabbed my girl and we did what we do best....
act a fool.
That's what happens when you're from Tahoe,
You become a real life tree hugger!
Now, where's the granola?
You know we're always striving for our best Romy and Michelle.
I spared you from the 'outtakes.' They were off the hook!
Heels + Tahoe terrain + two clumsy girls = bad!
This was our best Victoria Beckham.
So we finished all our pictures and I went back to my respective Table 5, while Amy sat at her Table 3. I was freezing by then and of course did not bring a jacket, so I grabbed Dave's. I slipped into it, and shortly thereafter looked up throughout the sea of Table 4, and immediately saw the back of Amy in her husband Tracy's suit jacket. Of course, she didn't bring any sort of jacket either.
Doesn't Amy look amazing in this picture? She looked absolutely gorgeous all night long!!
After being on The Institute program for a full year, it was more than clear to us that Aviana was barely making any physical gains. We pressed on at full speed though. What else were we supposed to do? We felt this was her absolute fighting chance, so we were not about to stop. At the time, the mere thought of slowing caused instant nausea anyway.
Once we went on our Honeymoon from the program, we were downright exhausted. At first, it was extremely difficult to switch gears. We quickly found other important ways to keep busy though. At the end of our time off the program, we found ourselves standing squarely at a fork in the road.
To our sad surprise, Aviana had not slid backwards as we had hoped, as we had secretly wished her to. We figured with all those hours and hours of therapy a day, she would surely digress. We definitely thought we would see the ramifications of backing off from that sort of intensity for three whole months. We expected an immediate "kick it back into high gear" plan would be set in motion, but no, there was no such thing.
That in itself was a devastating blow, and one of my lowest points. For that was the moment I feared most as we initially embarked on the program in December 2009. I remember saying a silent prayer before we started...please don't ever let us arrive at a realization void of progression. Always keep us in some sort of forward motion. Please don't ever let this be all there ever is. Please, I beg of you. Please don't ever leave us, and let this be. Please. Always provide us with something, anything to keep us going. Please give her some sort of quality life. Please let her be able to do something, anything. Please.
So after pouring our blood, sweat and tears into the program, there it was, that stark realization, that unimaginable reality was indeed staring us right back in the face. All that we had hoped, and prayed for wasn't going to materialize...those were some difficult days.
We weren't sure what to do, so as you saw, what started out as a tightly clenched fist around that program, slowly loosened over time, until we finally released our grip, and let it go. It's awfully hard to see something work for others, but to at the same time carry the truth deep in your heart, and know it's not working for your own child. In the dark of the night, in the deepest corners of my mind, the voices would play, the damage is just too great, too global, too severe. They were right.
Albert Einstein said, "Insanity is doing the same thing over and over, and expecting different results." Throughout my life, I have a habit of taking a few steps back and assessing my life for this pattern, the pattern of insanity. Am I acting in an insane way? In that regard, we definitely were, and were for way too long. It had to stop.
The pain at that time was like a heavy weight, bearing down deeply upon my chest. I'd repeatedly try to stand straight, but it would lie itself right back over the top of me. Bastard.
Changing gears on the heavy machinery of the mind takes time. The massive piece of equipment must first slow itself. This took a great deal of time, energy and anxiety. After all, the gears were as far apart as they could possibly be. We were switching from that of a take no prisoners, forward moving one of recovery, to that of a well balanced, life sustaining one of acceptance.
Acceptance was, by far, the hardest part, but once we finally recognized Aviana for exactly who she was, the heavy burden finally freed from our shoulders. We just wanted her to be happy, and to enjoy what life she has left, no more, no less.
I had the hardest time, and still to this day stumble over my words, at times, in explaining something though. We had so much hope when we were in the hospital, and all the way through the program, but a strange thing happened along the way. In realizing the true reality of our lives with Aviana, we lost all of our hope, in a sense. I don't mean this in a negative way, but in the way we all seem to perceive the word hope. In our world, the word hope seems synonymous with recovery, but for us, recovery is no longer the way in which we view Aviana.
Out of curiosity, I just looked up the word hope and here is the definition -
1. to cherish a desire with anticipation
2. to desire with expectation of obtainment
3. to expect with confidence
Ok, so yes, we all hoped she would get better. We all hoped for some sort of recovery. We all hoped she would walk, or talk, or smile. We all hoped she would laugh. For God's sake, we all hoped she would be able to show some sort of happy emotion. Hoped, hoped, hoped. No wonder it all dissipated with the program, and over the past three years, right? It makes perfect sense.
However, I couldn't figure out my exact feelings on the loss of hope and acceptance. I would try to explain it to people, that it wasn't a bad thing, it was a good thing. That the loss of hope, and acceptance go hand in hand. I promise. It always seemed to come out wrong, but it was because I couldn't accurately explain my heart.
In past posts I've touched on the fact that the book, The Power of Now has become my bible. As I was reading, it all became crystal clear. There it was, in black and white, laid out so eloquently, my exact feelings.
"What you refer to as your "life" should more accurately be called your "life situation." It is psychological time: past and future. Certain things in the past didn't go the way you wanted them to go. You are still resisting what happened in the past, and now you are resisting what is.
Hope is what keeps you going, but hope keeps you focused on the future, and this continued focus perpetuates your denial of the Now, and therefore your unhappiness."
Yes, it all makes perfect sense. In our new found acceptance of Aviana, hope had lost its place. We now appreciate Aviana for exactly who she is and no longer for what she can or cannot do, or what she might or might not do in the future. There was no more room in our hearts for hope. We no longer hope for her future. We do not hold out hope for anything else for her. Sure things like happy emotions would be nice, but if they happen they happen, if they don't, they don't. It's completely different than it used to be. It has been a paradigm shift for us, completely life changing.
I was so thankful for this explanation, as it put actual words to my mixed emotions!
If you can believe it, this was not at all what I had planned on talking about today. I suppose this was all kind of a necessary prologue to what I have yet to say : )
I don't know what I did to get so lucky, but I did! When we were thinking of going to Nashville, Dave told me to go ahead and go with my Dad and he would take care of Aviana. We don't usually take trips without each other. I can only think of one other time I decided to hang back, and that was when he went to Whistler with our friend Freddy. I didn't have to take on the responsibility of a child though. At the time, I just had to make sure Kama was loved enough for the both of us, and that was always a given.
I felt even worse when I found out the Gary Allan Fan Club Party was being held on a Tuesday. A Tuesday? Dave didn't even bat an eye. He said he would take the days off work. That was just crazy to me, as all of Dave's vacation days since the accident have been spent at the Brain Injury Institute in Philadelphia! The only other days he has taken are a few attached at the beginning or end of a weekend here or there.
So, I devised a plan. I ever so sweetly asked Rainey if she could babysit for me. With her sweet, little eyes set squarely on me, she said, "Mama, when I was on the streets, it was all Hard Times USA. I had to fight for my food. Then, I got snatched up by the doggy Po Po. I was so scared. But then you, Daddy, and Avi came along, and plucked me from that cold, concrete, pound. You have loved me like I never dreamed anyone could. Before I can even wish for something, it just appears. Of course I'll watch my sister while Daddy is at work."
These were actually stills from the Nanny Cam while I was gone.
Ugh...Mommy was right, feedings are hard! It's much easier though when I feed her in my bed. I wish I could talk, or had a thumb so I could type Mommy a comment on her blog, then I could tell her to try it. She's on that Topamax and can't take a clue from this picture though...
It's ok Avi...she'll be back soon.
Ok so maybe we didn't leave her entirely with Rainey.
I asked the school if Aviana could go an extra couple of days, and they agreed. I think I've told you this, but I was in search of our own Respite person, meaning not one they send out, but one you find yourself. I started asking around soon after we lost all of our nursing. The girl who does my hair said she had the perfect person for us, who also happened to work at the salon. Her name is Natalie and yes, she is perfect.
Natalie has been coming over, on and off, for a number of months. She would watch Avi for a few hours every Wednesday, or every other, before Aviana started school, so I could run a few errands. She's pretty amazing. I asked her if she could help while I was gone, she said she could.
So the plan was, Dave would get Aviana up and off to school, and would go in late to work, and then Natalie would get here in time to catch Aviana off the bus. She would take care of Aviana until Dave got home from work. Dave would then take it from there.
Because of these two, I was able to go, and see, and enjoy.
I am lucky.
I feel blessed.
I am so thankful for having the best partner ever. He picks up not only where I leave off, but so much more. He knows how difficult this life can be, and understands how important it is for me to just get away from it at times. He is more than cognizant of how up close and personal I am to our situation.
As I have said so many times before, Dave never complains, he just does what needs to be done. With every call home, everything was going perfectly. Actually, on Monday when I called, he said I have to go, your Mom and Gary are here. Your Mom brought me a bunch of meals, because my wife left me with no food : ) Ahhh....I see my Mama is spoiling you. Good!
When I called to tell him we were stuck in Denver due to a severe weather delay, and wouldn't be home until about 3am, what does he do, he offers to get Avi off to school in the morning so I could sleep. Of course I said, no way. When I finally did get home, the house looked great, the feedback from the school was great. He rocks.
The divorce rate is awfully high in the special needs community. We haven't been fortunate in the obvious, but I try very hard to stay focused on what we have been blessed in.
Can you tell I am trying to catch up on my posts? I'm not quite sure how I got so behind. I still haven't even added our pictures from Idaho, I feel funny though because they have snow in them...and now it's June!
My Mom and Gary were watching Aviana one night and when we got back to their house to pick her up, this is how we found her. I couldn't stop laughing.
Rainey got another new bed. As you can tell, she has a way with pillows.
Auntie Amy comes over for Pie Night every week.
Aviana loves when she is over because Amy loves on her, reads her a book before bed, and is just extra sweet with her. Amy always has been.
Aviana's face is adorable in this picture!
I love these pictures of Aviana. I actually took about 30, and had to narrow it down to a few on here.
I think I got a kink in my neck after this photo shoot from turning around from the front seat to the back.
Rainey has a fascination with taking all the pillows and sometimes the couch cushions too and tossing them about.
Rainey, did you throw all those couch cushions all over Daddy and Avi?
My Mom and my Uncle Roger's cousin, Sister Marie was visiting from Hong Kong over Mother's Day. She had never met Aviana. It was so nice to meet her. She was one of the kindest, most gentle, people I had ever met.
This was Rainey trying out her new bed.
Rainey, do you like it? Will it do?
Oh good, I'm so happy! It's officially Rainey approved!
We love when Rainey stands like this. All stocky with her shoulders out. I am always trying to capture this pose, and text these pictures to Dave while he's at work. She happened to be behind him this time.
She's our little brut.
Kama was our super model. So blond, so tall, so skinny.