Alone In A World Full Of People

For the past few days, I have been thinking about my daughter Caitlin. About all the things shes been through in the past 6 years. Whenever I think about it, I think to myself, "This isnt fair to her, why her out of all people." But now I know why.

When I was younger I had a father who for a lack of a better word was a piece of crap. He treated us like crap, and made every available effort to tell me I would never amount to anything, among worse things. It wasn't until I was about 20 that I found him, called him and told him everything I wanted to say, and started counseling. While going to my therapist it made me realize a few things that I didn't know, and could comprehend when I was younger. I finally realized that the reason it had happened to me was because I was strong enough to take it. That may sound odd, but I now have the attitude of what doesn't kill you, only makes you stronger.

Now back to my beautiful daughter. She has done probably close to 100 blood tests, liver biopsy, MRI's, CAT scans, barium swallow, 2 g-tube surgeries, ng tube, 6 months of being a guinea pig for growth hormone (shots every night for 6 months), among countless other tests for every condition/disease/syndrome you could possibly imagine. For the first 4 years of her life we had no answers for her as to why we were doing the things to her that we were. On July 28th 2008, 3 days before her 4th birthday, we got our answer. Russell Silver Syndrome MATUPD7.

I remember that phone call because that geneticist acted like I was nuts for crying and telling her thank you every 5 seconds. I couldn't believe that we had found it. It was very rare, but we had cracked the code. I sat with my baby girl and just cried and cried because I was so happy she would hopefully never remember the torture that she went through for the 4 years before that.

We thought it was over, we thought it was done and continued with the g-tube surgeries that we knew would help her. Now fast forward to this year.

Beginning of kindergarten came around and Caitlin was so ecstatic to go to school! I was excited for her as this was her independence from everything, where she could just go to school and learn. On the 3rd day of kinder, the teacher asked me if Caitlin had an anger problem and asked me to put her in counseling. At the time I was really angry with the teacher for even saying that to me. But I now know I was angry that it was happening again. I was rendered helpless again and there wasn't anything right then and there that I could help her with. I'm not going to lie, its the worst feeling you feel as a parent, to not be able to provide support or help for your child.

She was eventually diagnosed with high spectrum autism and put on meds. I don't believe that it is HSA because it is really really rare for kids to have two genetic disorders. But I took it in stride. The meds started helping her anxiety and she continued in school, and did very well with the academics, not so much with the socialization.

Then a few months ago we were at her GI appointment to talk about her feedings because she was losing weight and she wasn't tolerating her feeds. The doctor then asked about her liver. I had no answer for him because being a military family we have seen so many doctors and have been shuffled around so much that no one ever followed up with her liver. I told him that they had told me she had a fatty liver, whatever that meant. He decided that a liver biopsy was in order, but first wanted to do an ultrasound after he started to suspect NASH. He wants to do the ultrasound to see how much liver damage there is so we can act accordingly.

Well tomorrow is the ultrasound. I'm scared. I'll admit it. On one hand I don't think that after 6 years there could be a lot of liver damage, but at the same time, with everything that has gone on with her I cant put it out of my mind. I am glad that she doesn't know that I am scared...scared for her, scared for me, scared for the situation that could arise. I am just glad she still has her innocence, even though she has been through so much.

I kind of went on a tangent there, but I guess the whole point of it, was to say, that she is one of the strongest, feisty, and loveable kids I have ever met, despite everything that she has gone though. She already has the attitude that I found when I was younger, of what doesn't kill you only makes you stronger.

I just hope that when shes older she knows that all those times I had to hold her down to draw blood, or when she was 8 months old, forcing her to drink barium swallow while strapped to a board, or when Stephen had to put an ng tube down her nose only 2 weeks after coming home from Iraq, that she knows we did it because we love her.

I know this was long, but I guess thats why its called a blog, because your mind goes in 50 different directions when writing...

Life Changes Without Warning.

Its inevitable. Change is going to happen even if I dont want it too.

Over the last few days there have been a lot of changes in my life. My husband was screwed into PCAing to a different unit after only 10 months of being in his current unit. Now he is going to be leaving again in about 6 months, for the 4th time, except this time my daughter will be fully aware he is gone. I know millions of families go through this, and for me, I am not upset, we've done this 3 times, I'm fine. But Caitlin, I never thought would have to deal with this again. I never knew how much something like this could affect her, her life and progress with her anxiety. Its hard with her because she acts like Stephen is her worst enemy sometimes, but she loves him so much. The littlest things bother her and I hope we will be able to get through all of this in one piece.

I guess I never really knew what deployments did to kids, and how much they are affected by the coming and going of their mommy's and daddy's. Caitlin was 3 1/2 when Stephen came home last time, and that was hard for her at that age. I dont want her to be scared, or to wonder why daddy isnt home. It breaks my heart. But as I said, life changes.

Theres a lot more going on this next time as well, for Caitlin: Sensory therapy, school (1rst grade), liver biopsy, after school activities and of course doctor appointments that never end. For me just one big one. School. I have to do it. Its going to be rough because I had assumed that my husband would be home. I think my big thing is going to be trying to find a balance between over exerting my self and keeping my sanity. I'm a little rusty at this deployment thing :)

Hopefully I dont go insane. Luckily I know I will have my friends here to keep me sane with Starbucks dates, Army wive/ House dates, and going up north to see Caitlins grandparents and of course I will have Jasmine.

I know I whine about my dog, but she can tell I am dreading whats coming. I dont know if hes going to a war zone or what, so of course I am concerned about him. But Jasmine has this uncanny way of knowing when I need some snuggles, or some comfort. I am so glad we got her. She just kind of calms me and lets me know its going to be okay. Shes also Caitlin's best friend and I know that will play a crucial role in this upcoming deployment.

We'll get through this.

Rhythm is life, and life is rhythm.

I know, I know another blogger. But I find for me, its a sort of outlet for my completely random thoughts that I think as I am driving to Starbucks, the store, the hospital, or wherever. I have always been a type of "blogger" but it was confined to my little flowered diary with the heart shaped lock on it.

I notice in every page of my diary, there is always a reference to music. Music rules my life. I hear Blues Travelers, and it can take me back to when I was a freshman in high school, getting ready to go to the private school, I "thought" I wanted to go to. Or I can hear something along the lines of Tupac and it will take me back to when my older brother and I were going through a difficult time and would record Tupac off of the radio on our tape player just so that we could listen to it over and over again and escape reality.

I used to not understand what people meant when they said, " This song helped me through a rough time". It wasn't until my grandparents passed away that I really understood what that meant. I tried to stay away the whole time they were sick because I didn't want to have to deal with the reality that I knew was certain. They were big country fans and at the time I went through a phase where country was all I listened to. "Laredo" By Chris Cagle was my favorite. Every time I listened to that song, I thought about sitting in my room at my grandparents house, blasting it, and having my grandma walk in and try and dance with me. It is what I listened to the day I went to prom with my now husband, while my grandma did my hair. She said, " It is every grandmas dream to do her granddaughters hair for prom." I will never forget that day.

It's amazing to me that these songs can bring so much emotion to me but at the same time put me back where I was when I heard the song. I would like to think I have a soundtrack to my life, and ever since I was younger, in my diary, I would have my songs that I would listen to. Recently while cleaning out the garage, I found my little flowered diary with the heart shaped lock. I went and downloaded every song that was in my diary and took a journey in my head full of tears, happiness, and memories, and I now know that anytime I miss a friend, or want to go back to the last dance of prom with Stephen, or the day my daughter was born, I can. By just listening to the music.