Home away from "Home"

It's quiet.

Too quiet.

Eerily quiet.

As I lay in my bed in Vegas, trying to get enough sleep for work the next day, my mind goes. Most nights getting into bed is the same routine. I get into bed. The only sound is the sound of the fan blowing. And I think. Some nights bring tears, but all nights bring sadness. I try not to think, but it is impossible. I lay in bed, and I don't have my wife next to me, and I don't have my baby next to me, and I don't know when that will be again. It's just me. I don't know the last time I slept well. It wasn't meant to be like this.

You see, the days I work and I keep busy. During the evenings and nights, I keep occupied with things to do. But bedtime? I am forced to lay down in the dark...and it is hard not to realize the gravity of my situation and re-live it all. My wife sleeping next to me brings me a senses of comfort and calm. She is my rock. Her presence next to me eases my mind. Without her, I have to fend off my own self; and that's never good. It wasn't meant to be like this.

This is a reality that I have kept telling myself over and over and over again that I am going to have to live with, and I have no idea how long. The reality that I live in Vegas during the week, and my everything is three and a half hours away in a different city. The reality that I will spend more days on my own than with my family from now on. It wasn't meant to be like this.

Last week, our cardiologist told us that it has been enough time to see if the PA Band would re-shape Emerson's heart. Whereas the band has been a success in terms of her doing better than when we first brought her in, the band isn't re-shaping her heart. This means for sure she needs a heart transplant. In the back of my mind I knew she needed a heart, but you have to hold onto this little shed of hope that maybe this would work. It is a cold slap in the face hearing this again. You know that this is what is needed in order to save her life and for to be "normal" again (even though we will never know "normal" again). But you know there can be complications with this, this is something very major. You think of an organ that pumps all the blood and oxygen to the rest of your body, and this needs to be taken out and a new one put in, and that is scary. You just have to put your faith in God that He has got this. Emerson could be waiting for a long time. We just don't know. And until then, I live this life that I must. It wasn't meant to be like this.

I have good days and I have bad days. I have days where I have come to terms fully with what Emerson needs and our situation. Days where I just say we will get this heart, and she will get better, and we will bring her home and we will be a beacon with everything that we have been through and learned, and we will help others. And I have days where it hits me like a truck. I question. I want answers. I want a time line. I don't understand. I plead with God. I cry. I walk around and try to act like everything is fine, but inside I am broken. It wasn't meant to be like this.

I have always been more transparent in my writing. I don't want people to see me and see that I am broken and worry about me. As funny as it seems, I don't want it to be weird and uncomfortable with other people. I have always internalized things. So I write. I let it flow. I don't ever think, I just write. It helps to write.

It wasn't meant to be like this.