Thursday, July 24, 2014

What Hurts the Most

What hurts the most? The losing the ability to move on. I mean, you know, you spend 7 years making something like what you live and breathe everyday, and even though you gave birth to it, you want it to take flight on its own and survive. To be able to focus on stuff that isnt so life or death. Its so exhausting.

Sometimes I dont even know what to say or even if I want to say it. My words are already jumbled in this blog post.

I wanted to see her do things, like become a Rodeo Queen, but instead we are going to face our hardest challenge yet, and we dont even know if they will do it yet. If they dont, she will die.

Are you kidding me? I dont want to move to Boston for a year or more. That sounds absolutely horrible. I like my house, my bed, my life in Arizona. Even she cant talk about the move because she doesnt want to leave her home. How horrible is that? I mean, its horrible. And whats worse is if they dont do it, she will die, and thats even more unimaginable.

I know so many people want to talk about Faith. Faith in whatever. But there are times when I think "what kind of God would allow this to happen?" Problem is, He has nothing to do with it. Nothing at all. He is not in control of any of this. This is the life he created for us. He gave us life and said "Go". He isnt in charge of things. He gave us the ability to control it by giving us Free Will. Our life is what we make it and how we wish to control it.

I wanted to move on. I wanted to finish my degree and become the instructional aide I always wanted to be. I wanted for her to keep riding her horses, and competing, and doing her thing. I wanted to watch Aria figure out what makes her tick in this world. I still will, in small doses. Instead what I will be doing is living outside of the real world in this world of constant medical information, constant worry, constant pressure to ensure I am doing everything right. Exhausted.

I want to move on. I want us all to. Especially Alexandra. I want this not to be the main focus in her life. It sucks. I want Aria not to have to worry about the next time Mommy will be leaving her to go to Boston. Its not fair at all.

Instead of moving on, hopefully, I will be moving myself and my girls 2500 miles away from their Daddy so that we can all live in limbo while we hope and pray Alexandra's life is saved.

And whats the worst is, we dont even know if they will actually be able to do it!


Sunday, July 6, 2014

Soap Opera Life

What do you say to a 7 year old that says "I don't want to die"?

What do you say to a child who is growing into understanding what she has been through and what she will go through?

I have no idea. No clue whatsoever. All I could do was hold her to my heart and pray to the Lord that he would keep my baby with me.

I was at work last night, and received a text from my Husband "911, she is inconsolable, says she doesn't want to die". Thankfully the store had closed to I picked up the phone and called home.

"She is afraid to die, she says she can't do anything for herself, and her heart hurts, and she doesn't want to die". "Mommy, I love you." "Mommy will be home really soon."

It took everything I had not to completely break down while closing up the store. She has had a lot of questions lately. Difficult questions. Questions that neither my Husband or I are prepared to answer. All I can say is "You are going to be with me FOREVER". And while I say this my silent prayer to God is "Please please do not take her from me".

I know it all seems so dramatic. Kinda like a soap opera. But its our daily life. We fight for life every single day.

I had nightmares all night long. Myself yelling at nurses and doctors as my child struggled to live. The vision of Alexandra on the vent, myself sitting on the chair next to her, willing her to keep up the fight.

What's my greatest fear? That one day she won't want to fight anymore. That as she grows up and I have to discipline her and not give into her every whim she will think she has no more reason to live.

I don't know what the future holds. I do know who holds it, and I worry that He doesn't have the same plan for the future I do. But that's what faith is all about right? Knowing that no matter what, He has got you.

So for today, we live on. We live on until the day we don't anymore. She woke up this morning wanting to play ponies and laugh with her sister.

Her mind isn't on the fact that we leave for Boston in 2 days. Its on Rainbow Dash, and Applejack. She is excited to join Grandma and Grandpa for swimming this afternoon. This is our life in the Edges household. And while it can be a lot like a soap opera, its a damn good one.