Terrified.

It's as simple as that. That one single word. Those 3 syllables describe how I'm feeling in every single fiber of my being.
For the second time in two years I am putting my life in someone else's hands. No this time, it's not a doctor. It's not life threatening and I wont die. But it's still my life, in someone else's hands. This time, a judges.
I wasn't this scared the first time I put my life in another's hands. No that was easy. It was a matter of life and death. The surgeon saved my life. I wasn't scared of death, death is easy. It's life that's hard.
This judge gets to decide if he will make my life a little bit easier, a little less scary. Or if he is going to let it stay terrifyingly hard. He has the choice to grant me disability or not.
He has the choice of giving me a fighting chance. Of letting me get insurance and paying off the over half a million in OHS debt. He has the chance of allowing me to get my pills without worrying how I'll buy food. And being able to make doctors appointments. He has the chance of giving me a life. Maybe I'll finally be able to live on my own.
But he also has a chance of keeping my life the way it is. No insurance, no money. Trying to work, but not being able to. Of it being pure hell at times. Choosing between food or pills.

My lawyer called and questioned me a bit, coaching me on how to phrase my answers. And it absolutely terrified me. What if I say something wrong? What if I ruin this for myself. I don't know if I can answer those questions the right way. I don't do well with public speaking. I'm so scared.

What hurts the most

Death is hard, yes I'll agree with that. It's the single most devastating thing a person can go through. Wether its the loss of a parent, a child, or a friend. It's hard. It's painful.

But I think the thing that hurts more, is the forgetting. After my dad died everyone told me, just remember the good times. Remember the time you had with him.

My dad died 14 days after my 11th birthday. This year marks 11 years since he died. So this year, 14 days after October 17, I'll have been living longer without him, then I ever got to live with him.

It seems that everyday, there's something else gone. I don't remember the good memories. I think maybe I have one good memory. And the rest aren't so good.

I don't remember his favorite color. I don't remember his laugh, his smell, his voice. I barely remember him trying to help me with homework. There's so much I just keep forgetting.

That's what hurts the most.

On the road again.

And so it starts again. The road trips. I guess they will never really stop will they? When you live with a fatal disease like CHD, they just keep coming.

I was so excited when I found a cardiologist in Idaho falls. Lucky I thought! Only an hour from my house this is amazing. But of course, my heart being so complicated, I'm just not that lucky. But I did finally find an adult congenital heart specialist. So on August 1st its back to Boise I go. I have a feeling this is going to be the pivotal moment in my heart care. The turning point. To what? I'm not sure. But I know this is the moment.
It felt like before, I can feel it something big is coming. It feels the same as before. When I was about to find out if I need open heart surgery. I'm just hoping this doesn't end the same way. And I have a feeling it wont. I have a feeling its a good turning point this time.
After that, it's another road trip. August 2-4 I will be in Salt Lake City for my disability hearing! Its about time! I filed over 2 years ago.
I need to win this as this is the only way I can get insurance. I am scared and nervous. If I don't get this I'm not so sure what I will do. It feels like I'm putting my life in another person's hands for the second time in 2 years. What a weird thing this CHD life is.
But other then that, I am excited to meet a CHD momma Breeanna and her CHDer Averi!!