What I Wouldn't Give

I vividly remember, I woke up in a panic. It was approximately one year after Aviana joined our family. I freaked out, “Dave, it just dawned on me, I would definitely not cut my right arm off for Aviana!” I was devastated at that realization. I frantically asked him, “Would you cut your arm off for Aviana?” His reply was so Dave and lifted my spirits in one split second. He said, “Honey, I don’t know that I would even cut my arm off for you.” I could not stop laughing and have told this story many times.

Although it was a quasi-funny, a semi-funny, the Diet Coke of funny story~ I couldn’t shake the pain of the one true remaining fact. I sought counseling a few months later. One of the first questions she asked me was, “Would you cut your arm off for Aviana?” I immediately, without any hesitation, said no, I wouldn’t and I won't, not my right arm, not my left arm (not in a box, not with a fox.) I wouldn’t take a bullet, and once again, no, I wouldn’t do any of those sorts of things.

Through tears, I continued on with my rant. I explained to the therapist that I have thought extensively about all scenarios and the answer always remains, NO, NO and NO! That being said, my next question to her was, "O.K. now how do I fix myself?"

I now ask myself, what would you give to make Aviana better?

The answer is simple~

My toe.

My foot.

My leg.

Both legs.

My right

And

Left arm.

My eyes.

My fingers.

My nose.

Take it all.

I don't care.

Cut my entire head off.

I would give anything and everything to make her better!

In an Instant

While other kids wake up in the morning and go bouncing down the hall to the kitchen

~ Aviana stays in place and waits for me to come and get her.


While other kids wake up in the morning and think....do I want oatmeal or toast

~ Aviana has Nutren Junior through a tube.


While other kids hop in the tub and happily splish splash around

~ Aviana either has a sponge bath or is assisted by Dave and me both with a bath which is miserable for her.


While other kids can get dressed and ready all by themselves

~ Aviana has to struggle just to help me to lift her arm.


While other kids get ready for a fun filled day of preschool

~ Aviana has a day of grueling physical therapy.


While other kids contemplate if they want peanut butter and jelly or pasta for lunch

~ Aviana has Nutren Junior through a tube.


While other kids can go to the park and swing until their hearts delight

~ Aviana can sit and watch if she chooses to.


While other kids choose between a banana and goldfish crackers for a snack

~ Aviana has Nutren Junior through a tube.


While other kids play endlessley with all of their toys

~ Aviana is forced to try to play with them during therapy.


While other kids can rough house with their best doggie

~ Aviana, with help, can pet Kama.


While other kids can decide if they want chicken or fish for dinner

~ Aviana has Nutren Junior through a tube.


While other kids have a yummy treat after dinner

~ Aviana has water through a tube.


While other kids excitedly choose a story before bedtime and help to read it

~ Aviana has a story read to her and I think cries out, because there is some distant memory of Frog & Toad.


While other kids squirm around to find their most comfortable position in bed

~ Aviana is put in what we think is most comfortable for her.


While other kids wake up in the middle of the night numerous times to reposition themselves and their blankets

~ Aviana makes a little cry and I come running to adjust, assist or just give her some much needed love.


It’s weird to think that just 106 short days ago, Aviana was that other kid! Life can change in an instant, appreciate every moment!

Mickey Countdown

No, we are not going to Disneyland, but we are going somewhere just as exciting! At 11 am tomorrow Aviana will be at Kaiser getting her huge g-tube converted into a nice streamlined Mickey button. Woo hoo, there will be no lengthy tube hanging out her cute little outfits!! Can you tell I am so excited about this! The things I get overly excited about now always amaze me :o)

Anytime

Right when I wake up,

before breakfast,

as we watch Mickey Mouse,

while we do therapy,

during bathtime,

while sitting outside,

after lunch,

while we run errands,

at a doctors appointment,

while she is eating dinner,

or having water,

or even when we are getting dressed,

in the middle of the night,

or even at 2 am....

I love the fact that I can smother my little girl with kisses anytime I want!!

The Fork

There’s a fork in the road. Which way should I go? Should I go right or should I go left? Oh yes, that’s right... I don’t have a choice.

When the accident first happened, I felt as though I had been begrudgingly shoved down a road I wanted nothing to do with. I felt I was kicking and screaming all the way down! One thing was certain; I was continuously being propelled forward whether I liked it or not. No matter what I did, I could not stop the monstrous brain-injury wheel from spinning.

At the time, I felt this was the first time in my adult life where I did not have a choice. This was a very unsettling feeling and completely overwhelming. In a past post I reflected on infertility and came to the conclusion that I had a choice in that matter....I chose to adopt.

If I am being honest with myself, I may not have had a choice in that situation and moved on to the next option. At that time, we were faced with the choice of IVF or adoption. For us, adoption felt like the natural next step.

If I think about my current situation, no, I do not have a choice as far as what happened. What’s done is done. There are however many options in how we proceed. I can make choices every single day. I can choose to be positive about the situation and help Aviana to the best of my ability. In the past three months, I have been working so hard to drop the control freak which resides within me. At this point, it serves me no good, productive purpose.

My goal is to do everything humanly possible to help Aviana while maintaining a good, happy home life. There is a single lyric which has always been one of my very favorites. After the accident, this lyric really held new meaning.

It’s not the cards we’re dealt, its how you play the hand.

~Radney Foster

She's Back

Yesterday, Highly Emotional Girl returned with a vengeance. It all started with the Kaiser Pharmacy. I was about to lose my mind with them. Since Aviana’s release the world of prescriptions has been a total mess and a constant battle.

In dealing with the pharmacy, and all other wonderful entities involved in the brain injury world, I suddenly felt the walls closing in on me, I was suffocating, no longer able to breathe. It all came down to one moment. I lost it.

My poor mom got the entire wrath of everything thrown in her lap all at once. I went on and on for about an hour. There was no stopping me once I got started. Within one hour, Highly Emotional Girl morphed into all kinds of different people. I could create an extensive list of characters, but I will spare you the crazy details.

Bottom line: I can’t stand watching Aviana go through the struggles she has but no choice to endure!! This sweet, precious little girl will be climbing an uphill battle for the rest of her life.

Venting ~ what a wonderful thing at times!

Two Weeks

Aviana has been home for two full weeks today. Honestly, these 2 weeks have been wonderful. We have enjoyed every moment with her. I decided to do a periodic note about her progress for a few reasons. I would love to let all of you know what she is doing and what she has accomplished. I also have a terrible memory and want to remember all of these great moments.

I have said many times before; I am not a wishful thinker and choose to carefully analyze every movement and occurrence for valid progress. I want to be sure what I am seeing is actual and true. I sound so technical, don't I? I just don't ever want to read into anything.

These are the wonderful things Aviana has done in 2 weeks time~

• she sat up on her own for 25 seconds at one time.

• she lifts her head just about every single time I ask her to.

• I was feeding her in her bed one time and it leaked and she somehow moved her body out of the Nutren Jr. puddle.

• we can set her arms to the side and lean her and she holds her weight on both sides. One time Dave let go and she held herself up.

• she is tracking much, much better with her eyes.

• when put on her stomach or her side, she can lift her head up.

• she can now tolerate her feeds.

I’m sure there is much more that I cannot think of. Like I said….terrible memory :o( There was one thing I was saving to tell you. It was so insanely exciting. Tears were falling from my face for almost an entire therapy session.

Last Tuesday, I had Aviana lying on her right side and assisting her with pushing down on a toy slightly out of her reach. We did that a number of times and she seemed less than thrilled about it. She was showing all signs of boredom! I rolled her onto her left side and Kama happened to be a little over a foot away. Kama is so much more interesting than any toy could be any day of the week!

I told Aviana to go pet Kama. She was the most bound and determined little being I have ever seen. She was able to slowly move her body all the way over to Kama and put her hand on her. I could not believe what was happening. I was so excited. She was exhausted by the time she got to Kama. She loved on her and then I grabbed her up and was hugging and kissing her like never before. Aviana’s face was soaking wet, not from sweat, but from all of my tears streaming down on her face.

A few minutes later, I put her a little closer to Kama (based on how tired she was) and she managed to latch on with her little fists and pull herself up Kama’s side. She finally was lying over the top of her and she rested her head against Kama (just like old times.) Aviana was so at ease once her face was lying on her partner in crime. I did not have my camera and was not about to leave the room to run and grab it. I did not want to miss one split second of this action. I did however try this again a few days later on our bed. The pictures you saw yesterday with Kama and Aviana were from the second time she moved her little body over to her best friend.

As many of you know, Kama is my life. I did not think I could possibly love her anymore than I already do. After seeing Kama’s reactions to Aviana over the past couple of weeks, I am even more in love with her (if that is possible.) Kama knows Aviana is sick and when we have company she is wherever Aviana is....protecting her. She has gone so far as to growl at company when they got too close to Aviana. Kama never growls! The other day, Dave’s mom was standing with her hand on the crib and Kama wedged her body between the crib and his mom.

Kama is also so patient and loving towards Aviana. I try to use her for all therapy sessions as she is the best medicine of all. As Aviana is working like crazy, Kama doesn’t even mind the puddles of spit all over her. Now that’s love ;o)

That hurt ;(

Institute Quotes

~ There is no such thing as false hope, but there is false despair.

~ Time is the enemy of the brain-injured child.

~ Every day she is not better she is worse, since her peers move on and she falls further behind.

~ Never do anything with your child that you do not understand or agree with completely.

~ Explain everything you are doing and why you are doing it to your child.

~ Trust yourself.

~ You know your child better than anyone else.

~ Believe in your child~you have everything to gain and nothing to lose if you do.

~ Your brain-injured child is tougher than you think.

~ Your brain-injured child is the bravest member of your family (my personal fave.)

~ Your brain-injured child deserves the best~search for it, find it and get it for her, no matter what.

~ Never, never, never, never give up.

Water + Food = Vomit

Who knew? They knew. They who? Not Kaiser. Not UCD. Who? The Institutes for the Achievement of Human Potential. Who are they? They are the pioneers in the field of brain injury.

Trina highly recommended this program; she went to The Institutes and learned exactly how to best work with her daughter. She was extremely impressed with them. We have decided to attend the next seminar in Pennsylvania between November 30th and December 4th. During this week, Dave and I will learn how to help Aviana in every way possible.

We will then bring Aviana to Pennsylvania; they will assess her and create a rehabilitation plan tailored exclusively for her. This plan is to be carried out at home by us. We have decided to bring Aviana back every 6 months to have her re-evaluated. At that time, they will devise a new plan.

We are very excited about the program and cannot wait to learn how to help her. Something amazing happened over the weekend. This finding added confirmation to our Pennsylvania plans... Aviana has thrown up at Kaiser, UCD and here at home. Out of 5 meals a day, she would most likely throw one of them up. Dave and I revisited and revised her feeding plan daily to try and eliminate her sickness. This portion of the day/night was hands down the hardest part of my day. I had only seen Aviana throw up two times prior to the accident. Having to witness this on a daily basis was completely tearing my heart apart.

Finally, after almost two weeks at home, we thought we had singled out the culprit. It was the water. Aviana is to have 40ml of water 4 times daily. At the hospital they always included it with her feeding. We stopped putting it with the feed and started to give it at some other time of day. Further tweaking was necessary, because she threw up a few water feeds as well.

The next day I was reading some information which was sent to us from The Institute. There in black and white it was clearly stated:

• Drinking liquid at meals interferes with digestion and worsens reflux.

• Give your child small but frequent drinks of pure water between meals.

Hallelujah....hallelujah, hallelujah!!! There it was...I wish I would have read this eons ago. Aviana would not have had to suffer through so much sickness. As they say, knowledge is power.

All I have to say is....Pennsylvania here we come!!!

A Day In The Life~ Take 5

How could I have forgotten to complete the most important “A Day in the Life” post?? We are enjoying Aviana to the fullest and want to share our day with you :o) We wake up.... We read.... We make sure everything is going according to schedule.... We eat five square meals a day.... We make sure to take our medication three times daily.... We get a good workout with the best therapy dog in town.... We always make time for kisses.... We love to hold hands/paws.... We make sure to do therapy later in the afternoon.... We love on Daddy.... We make sure to save plenty of love for Lamby.... Sometimes we read the paper.... The paper can be boring and make me very sleepy.... Night Night....

Calling All Bloggers

When time allows, I would love to be able to comment back to you!

To all of my experienced bloggers out there: what is the best way to do this? I have tried to reply to the e-mail I receive and that has not worked.

Thank you!

Saving Grace

After writing my last post, I began to reflect on all of my difficult times with Aviana. Each one swirled through my brain. I was thinking of what got me through all of those challenging times. The obvious answer to that question is my mom and Gary.

They love Aviana with everything in their being. She was and is the most perfect individual they have ever known. When they saw each other, I would watch all three of them light up in a way like never before. I called them the “Three Peas in a Pod.” Anytime I was having an exceptionally bad time with Aviana (which was more often than I care to admit), my mom and Gary would round the corner like a bat out of hell. They would excitedly swoop in and scoop her up.

The three of them together would be off on their many adventures. Their love spilled over when she was in the room. When she was not with them, they were constantly buying her things to fill the void of her presence. Aviana would stay at their house at least once a week and in some cases up to three nights a week. During those times, I often wished I could feel one iota the way they felt for her. At the same time, I was so thankful Aviana was being loved the way she deserved to be.

Through two years of struggles, my mom and Gary never once cast judgment on me and were only supportive in every way possible. They saw the absolute worst in me at times. I remember one time I was so incredibly frustrated with Aviana, I slapped her in the face at Costco. You heard me right. I am bawling right now just thinking of that time. I never ever thought I would slap my child and there I was...a fool, putting my hand on my child and in public of all places. I often thought- who am I and what the fuck am I doing? I will never forget the look on my mom’s face. This look will be permenantly etched in my brain for eternity. She was so hurt, it was as if I had slapped her. I can now imagine what she must have felt in that moment.

It just dawned on me the other day, how must my parents feel at home. I have Aviana here with me all day long. They do come and visit all the time, but what must it feel like when they go home? Their entire house is Aviana, every inch from the front sidewalk, through every room and stretched across their entire backyard. She has left her mark everywhere. I hope and pray with all my heart that it is not as though they are walking around in the dark. I hope that bright shining light is not in the off position!

I just wanted to thank my parents for always being there for me and above all for always loving Aviana in the way I simply could not. I love you both and want you to know that we will get through this. We will look back one day and this will become a distant memory. Aviana has shown us what she is made of in one short week home and we should all look forward to what she has in store for us!

I love you both so very much!

The Long and Winding Road

I feel slightly sick and twisted at times. As you know by now, one of my biggest challenges in life was connecting with Aviana. From the beginning, I always knew there was something missing. Absent was the deep down underlying love one has for their child, the love that softens your heart when they are in the room, the love that makes whatever they do wrong, not so bad.

Although I loved her and we were making great progress on our journey prior to the accident...we were nowhere close to being finished. Through this process, I sometimes flashback to a conversation I had with a friend. We were sitting on the beach in Southern California, having a true heart to heart conversation. She assured me, the first time your child gets hurt, you will quickly realize just how much they really mean to you and how bonded you truly are to them.

At times, I have a sick sense of humor and jokingly said, “So, what should I do, shut one of her fingers in a door?” This sounds awful, but I was so incredibly desperate to be close to Aviana. At that point, I was truly at a loss and had tried so many different ways to resolve this issue.

As you know, Aviana is one tough child. She has had her fair share of scrapes, bumps, bruises, etc. We did call her "Rough and Tumble" for good reason :o) After each incident, the question remained, did I feel any closer to her at those particular times? If I am being honest, I would have to admit, maybe a little, but not too much.

When this accident occurred, I was severely questioning if the two of us had built enough of a foundation for me to properly care for her. I was so consumed with the fact that if Aviana, as we knew her, was gone....was there anything left? I questioned if I was just simply in love with her personality. If that was the case, I felt a house without a foundation would surely crumble!

As I spent hours and hours by her bedside, the winds began to shift. Without me even pushing for anything and just simply sitting close by, I found myself flashing back to my friend and my conversation. While of course we both could never have imagined an accident of this magnitude, I sat thinking....she was absolutely right!

While in the hospital, I felt closer to Aviana with each passing day. I felt sad when I wasn’t with her. I felt terrible for any pain or discomfort she had to endure. I also could not wait to get her home. I was getting so anxious during the weeks leading up to her release. I could not wait to be the one to take care of her every need. I began to even scare myself. Was this a true feeling or would it wear off after one day?

I am not proud of the mother I was prior to the accident. She was so perfect and full of life, but I couldn’t help but think that everything felt like sooooo much work. Through trial and error, I knew I could not make myself feel a certain way. I was more than impatient with her. Many times I was not caring enough toward her. Many times I felt as though I were just going through the motions. Our relationship was not what I had ever imagined it to be. Above all, I could not stand the way I sometimes was while caring for her.

Doesn’t it seem as though it would be much more difficult to take care of a brain injured child who cannot walk or talk, who has not much control of her body and who is weighing in at 37 pounds right now (UCD was really sticking the food to her)? Doesn’t it seem as though having to change diapers again, clean up throw up on a daily basis and complete all feeds through a tube would be more than challenging?

What I have found is once your heart is fully devoted, these things do not feel like much work at all. My mind can’t help but wander to the fact that this is happening now. Sometimes I feel selfish, as though Aviana has taken the fall for me to be the mom I always wanted to be. I feel as though I have arrived where I want to be at her expense.

At times this bothers me to the point of bringing it up in conversations. I have talked extensively to my friend Jen about this. She understands my feelings completely, but says, “Just thank God you are feeling this way now.” I think of what Jen said every time thoughts about this issue creep into my mind. I am then at ease. She and I usually end this topic of conversation with the all encompassing phrase, “it is what it is!” I pray with open hands and an open heart for me to continue to feel the way I now do about Aviana!

Aviana's Song

Look what arrived in our mailbox yesterday! I should say, the music arrived. We added the photos.

Make an on-line slide show at www.OneTrueMedia.com

Lyrics~

I can see her and Mickey Mouse playing at Disneyland

he’s holding a banana and grilled cheese sandwich

in his white gloved hand

she’s a champion swimmer, don’t you know

and she loves “Frog & Toad”

and “Crazy Cakes”

and “I Like Myself”

she’s a good reader, you know

ooh, Aviana

I’m singing your song

hey, Aviana

this song’s for you

well there’s her Mom and Daddy

and Nana and Papa standing by her side

and Kama her dog and Zoe her cat

they’re her love and pride

she’s full of sunshine,

full of smiles

laughing all the time

everybody loves you so

you know she’s one of a kind

I tell ya

ooh, Aviana

I’m singing your song

hey, Aviana

this song’s for you

ooh, Aviana

I’m singing your song

hey, Aviana

this song’s for you

Songs of Love completed the music for Aviana's song. 60 Minutes and they themselves tell their story much better than I would. The next clip is 10 minutes, but completely worth watching! There are so many truly amazing people in this world.

Home Sweet Home

Our butterfly has landed! The long awaited day had finally arrived: September 8, 2009. We were so very excited to go pick our little pumpkin up. After lots of packing, waiting and saying our heartfelt goodbyes, we were well on our way.

Onlookers probably thought we were stealing this precious little child. I have to admit, we were swerving around the UCD maze as though it were an agility course and we were attempting to break the world record! There was nothing like crossing the threshold of the hospital door and knowing there was no looking back. No more hospital rooms. No more beeps throughout the night. No more visiting our baby. No more leaving her behind!

We finally arrived home at 7:30 pm. We carefully brought her into her room and gently laid her in her very own bed...as though she was a new baby coming home for the very first time! This was one of the happiest moments of my entire life. Her room has painted animals all over the walls. She immediately looked around at all of these creatures, as she melted like butter into her bed. She was so at ease and quickly slipped off to sleep. We could not stop staring at her and saying how she was the most beautiful being we had ever laid eyes on. She is perfect in every way possible!

Finally, we were able to dust off the video monitor, flip the switch and see her....right where she needs to be! I couldn’t resist, I just had to throw in a Gary Allan reference. So many feelings of our trip to Guatemala washed over me, but this time, with much more intensity.

On our very first night in Guatemala, I thought we were going to be up all night with her. I had fallen asleep and awoke in the morning to find her asleep in her crib. I had the very same feeling about this particular night. I once again woke up in the morning, flipped the monitor on and there she was, peacefully laying there.

She sometimes has a hard time keeping her first feed of the day down. I (ever so carefully and slowly) administered this feed. Just as quickly as I finished the thought, “That seemed to go well,” I was covered in projectile vomit. I have never experienced this in my entire life. Funny thing is Dave and I had just recently watched “I Love You, Man” and there is a similar scene in this movie. We had rewound it a few times and laughed our asses off. As I sat there covered in Nutren Junior, I couldn’t help but think, when you are the target of such an act, it’s just not that funny :o)

Other than that, the day went off without a hitch. She was so good and I loved having her close to me at all times. I loved being the one~ feeding her, bathing her, giving medications, changing her, putting cute bows in her newly grown hair, walking her all over the house, playing music for her, even cleaning up her puke, just plain taking care of her!

We have continued with her therapy sessions. If you look at the pictures of Dave, Kama and her lying on the floor, this is the fashion in which we conduct them, surrounded in love! It is obvious that she feels it.

Aviana has done so amazing with these sessions thus far. I have already seen improvements in such a short period of time. We have also already taken her to run errands, including Costco. I searched high and low for Maria, (Aviana’s favorite “snapple” lady), but she was nowhere to be found. I’m sure I will find a reason to go back within a few days...that’s what I do!!

This transition has been by far the best yet. She of course has her moments, but they are much more few and far between than I could ever have imagined. Honestly though, that is Aviana! She's easy like Sunday morning. Some things haven't changed. I can only guess what she remembers and doesn’t, but there are certain deep down traits that always have a way of permeating through to let us know...she is there!! We love her so very much and could not be any more proud of her and all she has accomplished.

This is such an exciting new chapter of our lives. While the old me creeps in and wants to read the very last page....the new me wants so very much to just kick back, relax and enjoy every single page along the way.

 Thank you all for your well wishes and for always cheering us on along the way. We love you!