Thursday, June 30, 2011

Ten

Today is our ten year wedding anniversary. I can't quite believe it has been 10 years. I have to say, I have the best husband a girl could ask for. He truly is everything I was looking for. I can't imagine walking this crazy life with anyone, but him.

Happy Anniversary B.

I love you!




Below is our first dance song ;o)





Wednesday, June 29, 2011

The Little Things

I seemed to think if we could survive a trauma the size of the one we have, the little things would seem just that, little.

I just got out of the shower, and even though I may look human, I truly belong in the reptile family. While I was slathering myself with a vat of lotion, I turned my right leg, more than I ever have while paying attention.  What I saw was horrifying. At first, I thought it was a shadow. I always prefer natural light, and it has been kind of overcast today. I looked closer, and yes, there they were, a cluster of tiny spider veins. You may be shouting, "Stop, being a baby" at your screen right about now, and that's okay, because I kind of feel like I am.

I turned away, and tried to act like I never saw the tiny little monsters. I proceeded on for a while, but then I couldn't help but look again, in the bright light. Yep, there they were, again! I was freaking out inside, and felt waves of panic shoot through my body. Treatment options were already dancing in my head, along with, "Has Dave seen these, and never told me?!? What about my mom?" I never expected this type of reaction. It felt superficial, and shallow! I knew there had to be more to it.

I have been to hell and back, more than once. My baby girl was dead, and was brought back to life. We have survived so much. Why was this bothering me so badly. I knew I couldn't reduce it down to simply not wanting to get old.

I think I have it figured out. I have something to compare it to. You guys may not know this, but I have serious grey hair. It all started when I was about 26. Ask anyone, it used to be a hobby of mine to sit on the bathroom counter, and pull them all out. That was great, until I could no longer keep up. They won. I lost. I then began the constant dying of my hair. I never used to be so meticulous about it, though.

After the accident, I noticed I was going in about every six weeks. My hair is seriously breaking the bank. Before the grey attacked, I was never one to get my hair done at all. I'm not kidding when I say that. You would laugh at how I used to cut my own hair!

There are so many facets of going through what we have been through, and some are the strangest of things, and pop up at the oddest of times. I tried to figure out why I was making time for my hair, whereas I never really would before. And now, why is this little area of veins bothering me so? I came to this conclusion. I have a hurt child, that alone is incredibly taxing. Add the kind of program we do, with insomnia, and there you have it, the perfect recipe for sometimes internally feeling above my numerical age. I don't want my outside to match my inside. I am always tired, but don't want to look tired, and haggard.

So, while the smaller things should be even smaller, sometimes they just aren't.

Now, what the heck am I to do with my new discovery?

Monday, June 27, 2011

More About You Monday

I forgot it was Monday today! I am sure you guessed, my favorite season is fall. I love it for every reason under the sun! I also love winter, because it brings heavy rain, and storms, storms, storms!

****

This week,  I got my question from another blog. I think it's a good one. I am especially fascinated with this question, and I hope you answer ;o)

Are you real?

Pool Party

Some of our best friends invited us to use their pool anytime we wanted. It is really convenient, because they live right around the corner. We warned them to be careful what they offer, because they just might come home, and find us floating around their pool saying, "Hey guys, you want a beer? Oh okay, well you know where to find them."

Seriously, the Zuves are some of the best people you could ever find in your lifetime.  We are going to take them up on their offer. We had such a great time, and there was nothing quite like seeing Aviana just drift around the pool. She loved it, and we all loved watching her!





















My Favorite!













Thank you Dave, Christie, and Dylan! We ❤ you!


The Honeymoon Program

I thought, does everything that comes out of this place have to be a program? And the answer was, why yes it does. Are you tired of hearing about The Honeymoon? Can you tell it's just about the only thing I learned this time around :o)

No seriously, this is exactly what this time is...

1.) it is a program of no program. Ha! I laughed when I heard that!

2.) It is not a vacation

3.) there should be a vacation within it though.

This is a time for us to come up for air, and to re-evaluate our new child. To actually get to know her. We are to evaluate Aviana, and make a plan for where we want her to be in a year, or two.

We are also to use this time to evaluate ourselves, Aviana, and the program. We are to determine if the program is doing what we want it to do. They say that sometimes the program becomes the problem.

In this time, we are to give Aviana opportunities, and to do things that we have not had time to do.  These are the things we have chosen to really focus on, and master in the next two months:

Aviana is to pick out her clothes for the day.

We have done this in the past. I would hold up two shirts, and she would look at which one she wanted to wear. I would do the same with shorts, hair accessories, etc. Now, with the FC Board, she can make more detailed choices. We did this the other day, and I will tell you what she said in another post :o)

Aviana is to work on being potty trained. 

This will be the second time around for her, and I honestly feel she remembers what it is like before. We discussed this, and were working on it for a few months before we left. After we talked about it, she was holding her pee for very long periods of time, and then it would be a downpour. We honestly didn't have the time in the day to focus on this, so for the past week, we have really been concentrating int his area, and she has done amazing!!! One day, she had a completely dry diaper for the entire day. She is a superstar!  She is fully capable, and ready, and if she fails, I know full well it is because we did not give her the opportunity, or were not patient enough.

Time for us to get everything in order.

We are going to use this time to get everything in order for when the program begins again. We are going to have all equipment built, and all reading materials, and bits of information ready to go...for the entire remainder of this session.

Removal of the feeding tube.

Aviana has been eating all of her food by mouth for at least 4 months. Towards our trip back, she was even drinking all water by mouth. The problem was, we had to make the food chunkier, and chunkier for her to eat, so she then required more water by mouth. We could not find the extra time in the day to accommodate this much more water by mouth.

Since we have the time now, she has not used the tube at all in some time. In this two months, we hope to get her strong enough so she can get it removed. With the amount of time she spends on her stomach, it is a serious inconvenience! And just think, the girl can then wear white shirts again. Hallelujah!

Work on the FC Board.

Also known as the Ouija Board, because that's what it feels like! I'm not calling Aviana the devil here, so back up :o) This takes time, patience, and know how to accomplish. This is now our greatest tool, and we want to get really good at it. We know we will all pay off greatly for being highly proficient in this area.

Rest and relax.

We have all been going a million miles a minute for 2 years straight, so the very last thing I am going to do is pack this time with things to do! Most importantly, we all need to slow down, and relax! We may not get another Honeymoon, so we are going to be very selfish with this time. I feel so bad for saying that, because I don't feel we are selfish by nature, but I do feel we have to protect ourselves during this time, and use it wisely :o)

Out and about.

We are also going to take Aviana out. We are going to take her to do things she wouldn't normally have been able to do. Take her out like a normal kid, what a concept!

Weekend away

They want us to include a weekend away for Dave and me. One where Aviana stays at her Nana and Papa's. Sounds like a win-win to me!

Writing.

I have been putting this next thing off due to how complex the program was. I was asked to write a chapter on Aviana for a book. A person we met has decided to put a book of eight stories of hope together. I felt so honored to be asked, and to have the opportunity to tell our story. What an exciting thing to be a part of. I think it will be a great experience! It is due by the end of July, and I haven't even started ;o( I better get writing!

******** 

So, as you can see, we are going to be pretty busy! Akkk! A week is already over, so it's going to go like that, hah??  Anyway, they have a report for us to fill out in the end, too. Complete with the story of our Boo Bear!

Sunday, June 26, 2011

The Guilt Factor

One of the best things about going back to Philadelphia is seeing all of the families we have met. I experience all kinds of emotions while sitting in a room with them. When I am surrounded by these wonderful people, I feel the utmost love, respect, and admiration.

The world of having a brain injured child can be very lonely. Adding an intense program on top, can then be even more isolating. It is so nice to know these families, and feel a connection, unlike any other we have. These people all know, to a degree, what each other are feeling, and experiencing.

I have become really close to one person in particular, though. Her name is Sophie. She, and her family are one of our favorites. They are warm, loving, sweet, hilarious, and everything else!

After we found out about the honeymoon, she and I were texting back and forth. We were talking about how the break is to be a minimum of two months. The reason being, it takes about 4-6 weeks for us to feel guilt-free for the lack of programming. They then say, we have the rest of the time to actually enjoy ourselves!  I told her that I was not going to waste the first month feeling guilty!! I was going to start enjoying right away.

She texted me on the first day of our Honeymoon to see how it was going. I replied, "GUILT. GUILT. GUILT." The truth was, I was wracked with GUILT!!!! I couldn't help it. It felt weird. All of us felt off. We were out of sorts. I had to resist the urge to run over and stick the bag on her face. I couldn't help, but already see her sliding backwards. I know all of these thoughts are quite irrational, but this is exactly what I was feeling. The sick mantra was ringing loudly in my head, "everyday she is not better, she is worse!"

Sophie is seriously the funniest person I have ever met. This next example will not do her justice, but I couldn't help but laugh when she said, "To quote the great Jen, I'm not gonna waste that first month!!" :o)

After I received her text, I was quickly reminded of the fact, and it was true, I wasn't going to waste this precious time, ever! That night, I decided mentally, if guilty thoughts came to mind, I would push them away, just as fast as they had arrived. I will enjoy this time. We will enjoy this time. We deserve this time. I sure as heck am not going to waste one moment of it ;o)

From that mind switch moment, I have really been enjoying it all! I haven't looked back, and now, I can honestly say, I can get used to this!! Living like a normal family....I can do this! Now, I have panic of a different kind....I don't ever want it to end!

Saturday, June 25, 2011

Heavy on My Heart




Like I have said so many times before, it is extremely hard to wrap your head around losing someone, who is right in front of you!

To all of you who know exactly what I am experiencing, this one is for you!

I love you Avi Bear Bear!!

Answers

Melissa asked, where we go in Philadelphia?

The place we go is called, are you ready for this, The Institute for the Achievement of Human Potential, or IAHP for short :o)

What a coincidence that you live there...so strange...thank you for reading :o)

****

Trina asked, does Aviana even eat kale? Does she have much arm/hand control? How does she point?

Aviana eats kale every fourth day. Before the rotation diet, she ate it all the time. Within each meal she has to have one leafy green, and it usually consists of either kale, collard greens, dandelion greens, escarole, frisee, bok choy, swiss chard, or something of the sort. You can find what goes into one of her meals here. The list changes slightly with each trip back, so now we have come home with yet another modified diet. Fun ;o)

At times, Aviana has very limited arm control due to her rigidity. She does loosen up though. We pull her arms up and down to stretch them out before we do the FC Board. We also usually mask her before, and during a session to keep her loose. Due to her rigidity, she might put her finger on a letter close to the one she is meaning to type. Honestly, she is pretty darn spot on though, but for instance, yesterday she spelled T Y R T L E. The U was right by the Y, so we understood exactly what she was trying to say.

We hold her hand with her two middle fingers pointing out. She then guides her hand and taps the letters with her available finger :o)

****

Trina also asked...What??? Honeymoon?? What did we learn in the lecture series this time? Do they still keep it below zero in the lecture room?

They said they started doing the Honeymoon Program 25 years ago, and it is usually given on the 4th trip back to The Institute, which was this trip for us. They said they realize by this time we are burnt, and in need of a break. "Glenn Doman were you reading my diary??"  Trina, I am horribly sorry you never heard of, or got a Honeymoon ;o(

I will definitely go over what we learned in the lectures in a future blog post!

Yes, they still keep it freezing cold!! Bring on the socks, boots, sweatshirts, jackets, I could have used gloves at one point, etc. And just think....I run HOT!! I felt for the people who are always cold!

Friday, June 24, 2011

The Honeymoon

I wanted to thank you so very much for celebrating with us in this very exciting thing that happened with Aviana!! I really appreciate it, and was floored by all of your comments. I carried my phone around, and as I read all the various things you wrote, I was dripping tears all over the place; in Target, in Ulta, at the park, in our neighbor's pool, at the mall, everywhere! You guys wrote such amazing things, and they all really moved me to pieces.

By now, you might be asking, "I thought you were, out of control, busy when you return from Philadelphia? You know, unwinding while trying to immediately implement another new program, while at the same time, building, hammering, stapling, and sewing all of the required equipment that goes along with it? What's this about a mall, a pool, a park, and all these other places??"

Well, you all know how we were feeling towards our upcoming trip.  I woke up bright, and early Monday morning, and instantly felt like death warmed over :o( Right when we got there, we went into our advocate's office, and I couldn't help but tell her every single thing I thought, and felt about this program.  It went something like this...

"Leia, I love you guys with all my heart, and know you are the only ones in the world who really care deeply about our child, but this program is out of control!! We feel like robots, and I feel we are just stuffing information in all day long. We are just shoving it all in, and she is not getting one single opportunity to show us anything she has learned, or can do! Not to mention, everyday is exactly like Groundhog Day, and this sort of life can't be good for anyone. Our family life is shot, as we are constantly doing this program to the point of wanting to gauge our eyeballs out with sharp objects.

We are going at a pace that shockingly has not killed us all...D.E.A.D. How can you expect us to do this?? How can anyone sustain the program, as you have written, for years on end? 

We take Aviana out to Costco, and other places, and the results are nothing short of amazing. She holds her head up high. She is attentive in every way possible. She is actually enjoying herself. She is thrilled to get out of the hatch house for some sun!

We need sun. We need wind. We need change of scenery. We need to do something different. We need to do things as a family. We need normalcy. We need, we need, we need...

So, something's got to give. Something has to change. We need some balance in our lives. 

***

We went toe to toe a little, but I firmly stood my ground, and luckily was not escorted out of the building, and off the premises.

She then said, I wasn't going to tell you this, and was going to wait for you to learn it on Wednesday in the lecture series, but since you are voicing all of this, I am going to tell you now.

In the lecture, you are going to learn about The Honeymoon Program. She said we were going to be given a break of sorts. The program is to be a minimum of two months, and a maximum of six.

Can you believe my stupid brain??? The first thought that came to mind was GUILT!! Why??

Anyway, I am going to tell you more about that program in the next post, but it's a good, and much needed one :o)

I apologize for being so slow to tell you about our trip, and what the new programs are going to be. Due to the enormous amount of information, and the emotional toll, I always feel I need to decompress when I get home.

Much more to come...

❤ ❤ ❤

Monday, June 20, 2011

Bittersweet Blessings

I have mentioned, probably more than a thousand times, how intensely difficult, and overwhelming being at The Institutes is. So by Friday, my brain is pretty much good for nothing. 

We were learning a new board to do with Aviana called a Facilitated Communication Board. It is called an FC board for short. We saw kids type out some pretty amazing things on these boards the last time we were there.

We were to do the FC Board in pretty much the same manner in which we do the Choice Board. We ask Aviana a question, and hold her wrist above the board, and wait for her to answer. As you saw, the Choice Board is just Yes or No. Sometimes she answers very strongly, sometimes it takes a little bit of patience, and sometimes she does not want to answer at all.




This was our very first time using the FC Board, and Spencer asked us what we wanted to ask her. I was spent to the point of not even being able to answer a simple question :o/ He said, you can ask her what her favorite food is? What her favorite animal is? I said, we all love animals so let's ask her that.

He asked me to write down answers on a separate piece of paper. We wrote,

Panda

Dog

Gorilla

Bear

Other

We showed the answers to Aviana. Dave had her on his lap, and was holding her wrist above the board. He could not really see what she was doing, but I was sitting across, so I could see perfectly. We asked her to type out the answer on the board, and held her wrist above. She just sat there, and impatient me, thought it was just going to be one of those kind of days on the board.

We then grabbed the Choice Board back out, and asked her if her favorite animal was on our list. She immediately answered No. We then put the FC Board back in front of her, and asked if she could type her favorite animal for us.

She immediately typed a K. I thought, "Wow! I didn't know she liked Koalas so much." She then went to A, and I thought, "Oh, I get it, she is spelling Cat wrong." She then went to M, and quickly over to A. I said, "Oh my gosh, K-A-M-A, she just spelled Kama!" I burst into tears, and flew out of the room. I was reduced to a soaking wet puddle, and couldn't stop for the rest of our trip. I have yet to retell this story without crying.  

I was so sad on so many levels...

I miss my Kama Girl more than anything in the world.

Aviana could have answered Dog, but obviously didn't want us to be confused with that menace, Rainey.

Aviana has been grieving deeply all this time, and has not been able to express her little self.

She misses her best friend terribly :o(

She will forever be loving and missing her.

No one can ever separate a girl from her dog.

So sad, makes me cry...BIG TEARS!!












In sickness and in health...













On a happier note, we asked her what her favorite food is, and her choices were...

Cake

Kale

Sweet Potatoes

Oatmeal

Other

She typed out Kale??!!

We asked her what her favorite thing to do for fun was....

Park

Costco

Mall

Backyard

Other

She typed Park.

We asked her why she was not enjoying her reading program lately, and she typed out...

Faster.

After 2 full years, we are finally able to rediscover our little girl again.

Did you notice that she typed one of the given answers for all of the questions, except the first one?

Spencer said she did amazing for her very first session, and said don't expect her to do that well on every future session. He said we are going to have to be really patient, and spend a good amount of time using the FC Board. 

What do you think? Pretty cool, right?


Hocus Pocus?

One of the hardest things for me, and everyone around me, to grasp is when Aviana does her choice board.  When I first laid eyes on this piece of paper, I took one look at my severely brain damaged child, and thought...no way, no possible way!

Maybe for that autistic child over there, or that one who is developmentally delayed, but miles ahead of my Aviana, but definitely not for my brutally hurt child. I am just being completely honest here. I actually hungered to believe it was true, or possible, but at first, my skeptical, logical, rational mind had a way of keeping me at bay. I realized I had way too low of expectations, and was void of any brain injury related knowledge, to know any better. I thought these people were crazy, but not so...quite the opposite.




I know for all those in the special needs community, this is nothing new, and you may know exactly what I am talking about. Or, you may have caught that one truly amazing story on 20/20 and it made you think otherwise. But for me, prior to being a hurt child's mom, I was a well child's mom. I felt comfortable with how I grew up, what I had learned, and when, and the timeline in which Aviana was advancing, learning, and achieving.

When you first arrive at The Institute's, you quickly realize what the full potential of your child really is. It is quite staggering to see children, especially hurt children accomplishing things you never thought humanly possible. I have seen hurt children comprehend up to four different languages. I have seen very young kids speed read Physics books in a matter of minutes, of which they had never seen before. I have witnessed hurt children doing the most advanced math at the youngest of ages, etc.

I just couldn't believe it. I don't talk about some things in great detail on here, not because I don't believe in it, but because my non- hurt child parenting reminds me of how outlandish some of this may seem. To be honest, it actually makes perfect sense based on the small percentage of brain we actually use, coupled with the fact that we tend not to push ourselves fully, until we learn better, or usually until we have to.  I have learned that I had not a clue as to how much a child, hurt or not, is fully capable of. It is outrageous to me!

I used to see those "Teach Your Baby to Read" commercials on TV, and my naive brain just didn't get it. If you told me at the time of my quick glance, and sideways smile, that I would soon be teaching my hurt, brain inured child to read, I would never have believed it. I have poured my heart and soul into her intelligence program, and boy has it paid off.  

I would have looked at a hurt child and their loving parent prior, and felt they might be wasting their precious time, as maybe the child just isn't fully there.  Not because I am a jerk, but simply because I didn't know any better. I know people are thinking the very same thing of me, and I completely understand why :o) Behind their half smile, they might be thinking, "Okay Jen, I think you ought to put down the bottle, or lay off the pipe, you've gone quite a bit off the deep end!" But no, they politely sit, watch, and sweetly ask questions :o) I have the best people surrounding me, I must admit!!

The Institute, and Aviana have proved me wrong time, and again. At first, I thought it was magic, or just plain cheating in some way, but I have realized there is no sleight of hand here. These kids are truly mind-blowing!!

I am going to tell you, what I think, is one of the most amazing stories ever. I went on for too long, but will be back shortly with some great stuff! 

I promise.

More About You Mondays


Oh my gosh. It is so nice to be back! I am in heaven being here at home, and having that long trip fading in my rear view mirror :o)

I wanted you to know just how much your comments mean to me. Before I left, I was well aware of the fact that I was going to need extra help getting through the week. The days were long, and tough on every level. 

As I was pushing through the week, each of your e-mails, texts, Facebook messages, and comments would pass through my phone at the most perfect time. When I say you all pulled me through with your kind words, I mean this on a level I can't properly explain. So thank you all for taking the time.

I truly got by with a little help from my friends :o)

***

Today, I woke up thinking about the seasons of the year. What is your favorite season, and also what is your favorite thing to do during that season?

Sunday, June 19, 2011

My List


My brain is, well...no longer, so I need to start this week off light, and easy. Even though we were gone last week, there was no way I was missing out on the answer to this question ;o)

Dave and I take our lists very serious. Over the years, we have allowed each other to completely re-arrange, revamp, and update, as we see fit. Some have been there forever, some have lost the top spots, and others have barged their way on in!

I laughed when I read all of your comments. I quickly noticed that lisapooh98, Tracy, and of course, Judianne, and I all shared in guys. What lucky men those ones are ;o)

***

I am going to start with my 5th spot, and count backwards to #1.

You might laugh when I say this, but my list consists of HOT, combined with what I have seen of personality, too! By the way, on a side note, a big grill is the way to my heart. Big, huge, white, beautiful, horsey, chicklet looking teeth make me stop in my tracks!!

Now don't laugh at my number 5 pick! I think he is hot, and love his personality!

***

DJ Pauly D

5




Oh honey... 
You spin me right, round, baby
Right round like a record, baby
Right round right round.




You may notice a theme. I have a thing for a guy with musical talent. He gets bonus points for having a guitar in hand.

***

Shane West

4












My sweetie of all sweeties. He was in my number two slot, but after going through all of my pictures of a certain someone, I couldn't help it. I think I could be with this sweetie below for life though, meaning beyond the meaning of the list! He is the most charming piece of man...ever!! 

***

Ryan Gosling

3




Oh Ryan, don't be mad at me. I {HEART} you and am so sorry for my current fleeting heart! I may feel differently tomorrow, okay??!!




❤ ❤ ❤

My next guy is beyond hot! I can't keep my eyes off of him! Boy was he blessed with a beautiful...everything!!

***

Josh Hartnett

2




Yum




Perfection!




Yum




Now, for my number ONE guy!! I LOVE this guy on every level. Looks. Personality. Sense of Humor. Musical Ability. Perseverance. Outlook. Everything!

***

❤ Gary Allan ❤

1




❤ ❤ ❤




❤ ❤ ❤ ❤




❤ ❤ ❤ ❤ ❤




❤ ❤ ❤ ❤ ❤ ❤

Don't tell Dave, but I think every girl needs some alternates. These were guys that were previously in my Top 5, but were moved for some reason, or another. My thoughts are, it's always good to have an alternate, in case one gets hurt, or sick, or wouldn't be able to maintain their slot for any other reason.


LOVE this guys personality. I wasn't initially into him, at all, because of his prior 'boy band' status. He's what I call a 'grower.' I like skinnier guys, that have medium sized muscles. At first, he was a little too muscley for my taste, but as time would have it, I ended up falling in love with him. I think he is an amazing man!!

***

Nick Lachey

Alternate 

1








Josh, I love you too! Your teeth do not fit into my typical 'teeth fixation', but with you, there is something I can't quite put my finger on. Are you deep? I think you are. There is something magical, and mysterious about you. I like it! I like it a lot, but not enough for the Top 5. 

***

Josh Lucas

Alternate 

2







Can you tell, I am quite cuckoo when I get back from a trip of this magnitude!!

Thanks for hanging in there with me, and my crazy self!

Dave's List


Since Jen has shared her list of her top guys, I'm sure you are all curious about the list of my Top 5 women.  Here is the list of my Top 5 women in no particular order.


Vanessa Hudgens








Sarah Hyland

She plays a teenager on Modern Family, but I looked it up and she's really 20 so I'm not a pervert. Recently she got a little too skinny for my taste, but I think she is still really pretty.








Vida Guerra

Va va va Vida




Jennifer Lopez

She has been on my list for quite a while.  She almost got bumped when she got pregnant with twins but she bounced back quite nicely and is even better than before.  




J. Lo was, of course, the inspiration for my nickname for Jen, which is J. Ho.




Kim Kardashian

Her personality kind of sucks but this is not a list of who I would marry so she is my #1 girl.