Courage

As I sit here, I scroll through my MP3 player trying to find a song to fit my mood. Which has been very hard to do lately seeing my moods change quicker then the changing of the wind. But try as I may, my stupid little Sansa Clip remains unyielding to me and my music requirements; all 544 songs that is held on it. I have everything on it from Hillary Duff, to Andrea Bocelli, to Bullet for My Valentine. I am a country lover, a hard rocker, emo, punk rock, metal, rap, hip hop, pop, classical and opera lover. Yet nothing appeals to me, nothing suits my mood, nothing moves me, nothing talks to me. I find no comfort in the one thing I always have. My one few solace's brings me no relief to the wandering and plaguing thoughts that curse my poor little head. I just want to clear my mind and have no way of doing so because when I write I always blog to music. How do I blog when I nothing to help channel my emotions and thought process. Yes, that is how I blog, and without it, I am totally one hundred percent lost. So what am I trying to get at here? Well this blog is going to be raw, with no channel, with no barriers. I will be frank and blunt and you will see my unfiltered side.

I told another lie today. I smiled when people looked at me and asked how I was holding up. I was screaming inside the whole time I politely said, "I am as ready as I ever will be." or "I am fine, we knew this had to happen." but do you want to know what I was truly saying?

NO I am not alright, how do you think I would be alright? My daughter, my 22 month old daughter, is going in for her 4th Open Heart Surgery. It may not be as risky as her second one, but it is a lot worse then her first or third. Am I scared? Yes I am, truly terrified. Sick to my stomach to the point food doesn't taste right or settle right on it. Sleep is comes in fragments and is no better then being awake.

I hate when I go to Walmart and people see me stocking up on stuff like travel containers and disposable baby wash clothes, and they go, "Looks like you are going on a vacation." I laugh ever so slightly and reply something as followed, "I wish it was a vacation, but that is what we are aiming for after this next surgery." in turn, "Oh surgery for yourself?" "No, unfortunately not, it is for my 2 year old daughter. She is going in for a heart surgery." "Oh wow, nothing serious I hope."

Ok lets put this on hold for a moment........

When you think of the heart, tell me do you think it is something of value in your body? Is it something you might need? Do you think surgery on it is nothing serious? I mean I guess it isn't like brain surgery, she can't end up brain dead if something goes wrong, she can just end up dead instead. Yeah, so nothing serious.

The, Everything will turn out for the best, or She will be just fine....I have to say those 2 make me want to scream. At the lack of education and the lack of understanding of it all. I mean I know some people just don't know what to say, but seriously, "She'll be just fine"....wow...Wish I had your optimism. Not that I don't think she won't pull out of this surgery, because I have full faith she will, but still....how can you be so sure? You don't even know her or her condition's....
Off track....

"This surgery will be a bit harder but she is a tough one." "Will this be the only one?" "No, she has had 3 others, this is her 4th. She will then undergo surgery every 3-5 years until she is 21, then every 20 years after that." the look of shock on their face is always priceless. I tell them "Congenital Heart Defects effect 1 in every 85 births, and that CHD's are the number 1 childhood killer." I know doing this, even though it sucks a little bit out of me having the whole conversation about Lily's heart, I am spreading awareness. Not sure if you are one of those few who remember random things and share them over meals. But I am, I will over hear things while I am out, and somehow even they seemed useless at the time, they make for interesting conversation later. I wonder how many conversations I have been brought in, as "A Lady" at walmart, or the supermarket, shared interesting facts with me today. I wonder if I have done some of my duty in spreading awareness.

At the end of these sharing sessions I always hear the same thing. "Well I wish you and your family the best." or "Your family and your daughter will be in my prayers." sometimes it is strange knowing so many people I don't know are praying for my daughter. Not strange as in I want it to stop, just strange that so many people know about my Lily.....my little Lilyana.....
My Lee-Lou, my gibber jabber jaws, belly giggling, Bar-EE(Barbie) lover, precious little princess. My little girl who detests the homemade tutu I made for her, but dances around the living room in her diaper. That sings while spinning a circle just to make her self dizzy to fall over and giggle on the floor. My piggy-potamous, the little girl that can finish off a whole can of mini raviolis, 2 oranges, and a cup of grape juice in one sitting. Who knows how to throw a tantrum so well, I wonder if a professional coach got a hold of her and taught her all she knows. My 6lbs 9 oz little bundle of a miracle who came screaming into this world at the ungodly hour of 2:27am. Who now weighs 31lbs and stands at 34inches. She is mine, my pride and joy, just like her brothers. I can not picture my life without her, and no matter how much I try to tell myself not to worry about what could happen I can't help how I feel.

I am terrified that walking out of this door with her she may never come back across it. She may never lay in her crib again. I may never hear her laughter while chasing her down the hall trying to get a diaper on her naked bum as she runs away from her diaper change. I fear not being able to watch her sleep. I fear not being able to look back in the rear view mirror and her not be there. I am afraid of no more pictures. I am just plain afraid.... all the old fears, no matter how much I try to push them from me after every surgery, they still loom. They are always here. How much is to much for her heart? I just want her, I want a normal life with my daughter, and as much as I am ok with her heart and I still can't help but be angry. Not even at anyone, just angry. I just wanted a healthy little girl, one that I could go shopping with, do nails with, and help plan a wedding with. And I can't even look months into the future without getting my hopes up and worry that I am dooming myself to failed dreams and crushed hopes.

To many I seem so strong, I am a pillar of strength. I am one who has it all together, who has a leveled head on her shoulders. Who holds it together during times of stress or pressure. I don't fall apart, I don't break at the seams. I am Jenna, Super Mom, "I wish I was like You Jenna. You're so strong." "I wish I was like you Jenna, I don't know how you stay so calm." What many don't know, I am breaking within, but I don't break on the outside. I hold in place my perfect facade, I let you see what I want you to see, I tell you I am fine because in all actuality, the real explanation would take more time then you really have. I tell you I am fine because I don't want sympathy or pity, it is not I who has to endure the pain of surgery, it is Lily. She is the one who goes through the pain, and one day she will go through the fear. Having to explain to her when she is far to young the meaning of death, and that she faces it daily. Her heart beats strong, but doesn't beat whole or full functioning. I am afraid I am not going to be strong enough for her, that I will let her down in her medical decision makings. I know her, better then I know myself it seems sometimes. It is scary and intimidating to know, I hold her life in my hands. To be on guard constantly, to know that when she says ouch that it may not just be growing pains. If she is short of breath wondering if she has over done herself.

And yet, through all this worry, I am truly blessed that I have this worry. I am blessed to look at my crazy teenage girl-like reflection from all this stress and know even though I look like I just hit puberty again, that this stress will pass. I know that as I worry, others grieve. Stress and Worry is a lot easier to handle then the pain of tragedy and grief. I never forget my daily blessings. I know to count each day anew, to wake up and take a deep clearing breath and say thank you to my heavenly Father for the glorious breath that filled my lungs. And then to breath a sign of relief and feel blessed again, when I walk into the kids room and see all my children made it safely through the nights. Blessings do not go unsighted in this household...
We all just can't help feeling the nerves that run through our body 3 days before surgery. It is all the same, it will always be the same. This will always happen, it will never get easier, and every 3-5 years, you can expect a blog like this one. Raw and unfiltered emotions, the only thing on is my profanity sensor. Because for some reason, during times of high stress for me, I can't help but let swear words go when my children are not around. Even though they say swear words are used by those who are intellectually challenged and can't form the thought process to say what they really feel. To me, sometimes there is nothing better then swearing like a sailor even though it does me no good, makes no sense. I would rather have a punching bag so I can put on my boxing gloves and tear the heck out of the bag....I am an aggressive person...if you haven't picked that up by now.....

As much as I will Tuesday to get her, I beg for the time to slow down and suspend itself from moving forward. These next 3 days, I get to spend time with my family. The 5 of us, Football, Austin's 4th Birthday, more football, pot roast, and packing. Double checking check lists and making sure the house is in order. Because once I leave, I will not be back through these doors until Lily's comes home, God willing.

So, in closure, I ask for your thoughts, your prayers and any words of wisdom you may be able to provide as comfort during this time. As most of you know how surgery procedure goes, I will get my Wi-fi pass when we get to the hospital, I will post a quick blog once she is taken back. We go and have breakfast, then make our way to the 7th floor waiting room. Check in on the floor, find out what room she is going back to and check in with her nurse. And I will update as soon as updates are given to me. So keep a look out on the 19th, (Her 2nd Surgery was on April 19th) the date kind of gives me the hee-bee-gee-bees. When I know, you will know.

Love Hugs and my many Blessings to you and Yours
Jenna

PS: I found a song finally off the Harry Potter and Half-Blood Prince soundtrack called Dumbledore's Farewell. (dreary yet mood appropriate)