Thursday, May 23, 2013


Lately I have felt like a puzzle. But the pieces are everywhere. I dont understand why 6 years into this journey I STILL struggle. I should totally be used to this by now, but I still get overwhelmed and freak out. I feel today like I could break in half. Like if I let myself I would have a nervous breakdown. Maybe I need to have one, but I cant. Who will manage all this?

I dont think I will ever truly stop struggling. That feeling inside my heart will never really dissapear. I just try and cover it up with memories, and laughter. But deep inside, that worry and heartbreak will always be there. I will always be grieving the life she could have had.

Dont get me wrong, I am so grateful she has come this far. She is surviving. But there will always be that thought in the back of my head that says "it could be her last moment". I try to live each day to the fullest, but lately it has been hard for me because of my physical state as of late. I have been really not feeling well lately.

My mind is full of so much information, I wish I had the ability to make it all better. But it takes time. I am not making any sense am I? See this is just how off my rocker I really am.

Know what I want to do? Run away. I want to put the girls in the car, go get their Daddy from work and the 4 of us just run. Just go somewhere and have fun. Stay in a hotel, and just play! Enjoy each other. But all that shit takes money, money we do not have. Hell for the past 2 weeks we have been living off credit cards. Eff it all.

Im stuck, and I always have been. Please God dont let my girls have to endure this like I have. Let them be free of the worry. Let them live without the constant hole in their heart. Even though one of them has only half a heart.

Thursday, May 16, 2013

Ugh. My Poor Aria.

I figured I would make a blog post cause Im sitting here waiting for Dr G to call me back.

So today we got the confirmed dates. We are to be in Boston on August 5th at 730 am for her first day of cath work ups.

Im going to puke.

So heres the thing. How on God's green Earth am I going to pay for this? I have no flippin clue. Somehow itll get done I guess. HAHA not easily, but nothing in my life has EVER been easy. Except for loving my girls, now that is one hell of an EASY job!

You know I realized something today, that unless you live this same life as we do, you have no clue what this is like. No matter how much I explain it to you, you will never get it, and I am so grateful you dont have to.

We now embark on a new path of this journey with Heterotaxy Syndrome and CHD. One that takes us far far far away from home.

Unless some amazing windfall of money occurs, Alexandra and I will be taking this trip alone. I have no clue what it is going to be like being all alone in a BIG city sitting in a waiting room all alone while they operate on my daughter. I know by God's grace, I will get through it, but oh man am I shaking in my boots.

I think more than anything I am worried about my Aria. Being away from her. She is going to start Kindergarten and I wont be here. Tears. A random set of 4 letter words. Hate and anger. Oh well. This is our life, and we gotta live it!

I have no clue how long Alexandra and I will be in Boston. I cant write anymore, the fact that I will miss Aria's first day of Kindergarten has got me super upset. Until next time....toodaloo.