I have been writing this for over a week and agonizing over sharing it, I don't call it secret thoughts for no reason but reality needs shared. This is life.
This is beyond hard and there are things I don't share with anyone at all. I hide a larger portion of my thoughts and feelings than you would think, I don't share my negative moments all the time. It's time for me to give up my secret thoughts.
This journey scares me and digs deep. I question. God, how long? is this really it? How am I supposed to do this? I had hopes and dreams of a family and a life and I always imagined by 25 I would be married with that family I desire so much. I feel like this syndrome has taken all that from me. I mean God is going to have to literally plop a man in front of the invalid in the bed for any of those hopes and dreams and wishes to occur. I was always told that God will give me the desires of my heart and I thought I knew what that meant, I was wrong. let's just say this is not what I (in my broken mind) think the desire of my heart is. I have been learning that my desires are not exactly God's desires, God's desire is the one promised to me, not my family, love, health or any other earthly desires. This process has been filled with so much heartache.
Heartache is basically a 24/7 thing as I lay here and look at these walls and stare at the stucco on the ceiling day after day after day. Knowing there is no cure and that I have exhausted my treatment options is crushing. This, right here could be my life for all my days on earth and I can't even begin to explain how scary, daunting, and just the deep deep dent in my soul that happens every time I re-realize it. We are talking daggers here. Some days the tears just don't stop. I watch friends get married via post wedding facebook pictures because I can't even accomplish being there and it breaks me. Every time. It feels like the world is moving while I stand still, stuck.
I never would have imagined that I would be thrusted back into this world of illness again at all let alone all this. Relying on IV fluids, formula, and meds to keep me alive. The surgeries, the hospital stays, the ambulance rides, all of it. I thought it was behind me. Well, shows what I know. The blessing from my past is that I learned what NOT to do the first time around. I now know throwing God out the window doesn't work out very well. In this war I am trying to continuously remind myself of what is true. He is my one and only source of hope, peace, and comfort. He guides me , loves me, and forgives me. He is the creator and sustainer of my life and I know He could heal me but I also know that He may not. That's the hard part because His plan is so unknown and through my eyes it is hard to see good coming from being like this. forever.
It's surreal that these are the only things keeping me alive.
It's reality though. I have to wonder what God is doing with this reality of mine. I find some comfort knowing the bible says that this is not in vain and I can't wait to see how it all fits together but for now I battle on one second at a time because that's all I can do, good thing that is all God asks me to do cause I just can't.
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