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!

 

Busy

I am sorry I have not had time to update the blog. We have been pretty busy and Dave is home today, so I will try and put together a post tomorrow.

Everything is going good and Aviana seems to be happy to be home and in her own room. Kama and Aviana are getting acquainted again. We love watching the two of them, they are both too cute!

We are so happy to have her home! She is a beautiful little munchkin and we feel blessed to be her parents :o)

We Have A Date

Aviana will be coming home on September 8th. Not only will this be an exciting day because of our baby's return home, but it is also Dave's birthday!! What a wonderful gift!

We have been busy getting the house in order for her arrival. We are thrilled and cannot wait to welcome our little girl home again!

You Know You've Been At The Hospital Too Long When.....

* you can navigate through the UCD maze while typing on your phone.

* you know exactly which turn in the maze always smells like fast food.

* you memorized the weekly soup schedule.

* you can make it to the pediatrics gym in 7.2 minutes flat.

* you know all nurses, doctors and therapists by name.

* you dream about the hospital and all its glory.

* you find great joy in watching other families go home.

* you find great sadness in watching new families arrive.

* you can grab and suction your child's mouth with cat like reflexes.

* you know how to change hospital bedding as though you worked there.

* you know how to work a feeding pump and tube.

* you know how to administer all medications.

* you know how to provide oxygen if needed.

* you dream about dirty pillow cases.

* you are unaware of just “how hot” it is outside.

* the parking booth attendants know you.

* you know there is a parking validation sign, but that they haven't done that sort of thing in years.

* you know that the neurotic use of alcohol based sanitizer results in your hands peeling in a snake like fashion.

* you know you can eat a roll of fresh fruit mentos in about 1 ½ minutes and a roll of stale fruit mentos in about 2 minutes 24 seconds.

* once in a while, you can show the nurse where something is located.

* you become immune to the fact that quarantined rooms which contain children with H1N1 are close by.

* you sometimes smell the hospital at home.

* you win Solitaire at least once a day.

I have many more, but I will spare you the details!

Thank you

We wanted to thank each and every person who contributed to Aviana's fund. We truly appreciate all of your help and fully understand that these generous donations may have been given at a time which is difficult for some.

Thank you to all of the people at Chevron for pulling together for our family. We are lucky to be surrounded with such wonderful people!!