Wrestling

This post is going to be hard to read for some. Its hard for me to write. You are going to be very tempted to judge my words, my heart , my feelings and set me straight. I know, but its honest. Its where I've been all day long.

I'm in the middle of wrestling with God. Its a place I never imagined myself to be. Its a place I don't want to be, but I find myself here. I don't get this. I really don't. I mean, she's 4 years old! My faith in God is what defines me. It is the core of who I am. I don't not believe in Him because they tell me my daughter may very well die. I don't believe in Him more if she doesn't. I just believe that He is who He says He is and that He can do what He says He can do. Its that simple. Right?

In good times it really is very simple to trust Him. When life is trucking along and Ash is home and living her four year old life I can really trust that He is a loving God. So what am I to do now? My baby is in pain 24 hours a day, finding no relief from her situation, and they tell me "this is what it is. Sorry". Really? Really God? What was the point? What are we doing here? I want to know! I want to know why she was given life so that it can teeter on the edge of death? I want to know why He didn't take her at 5 hours old or 5 weeks or 5 months? Why give her all that HE has and then snatch it from her in this way? I'm angry. I'm mad. I hurt to an extent I didn't even know was possible. I KNOW He can change things. I KNOW He can heal her. I KNOW He has the power to open veins that are closed and give hope to saving her life when there seems to be none. I KNOW HE CAN. What I don't KNOW is if HE will. That's the hardest part about this. Its the part that is rocking my faith to its very core and its time to get real. I mean really be real. I NEED HIM. I NEED a miracle. I NEED my tiny daughter to open her eyes and for them to sparkle once again. BUT I know HE isn't my "genie in a bottle". HE IS THE GOD OF THIS UNIVERSE. HE IS THE CREATOR OF LIFE. HE IS GOD. He doesn't have to perform for me to prove it. He doesn't have to prove anything to me or anybody else. I just wish that HE would choose to do the work He has in store for me, for my family, for our Ashley by HEALING her and showing this world His power in THAT way.

I'm sad. I'm scared. I'm broken. I'm a believer. Its what I am.

Ash has an infection. Her wounds from all the procedures at line attempts are all open, gaping, wounds in her side. All three of them are on the left side. Her cellular structure has been destroyed by her thymo treatments and the skin was not able to close and seal. So the wounds have been actively bleeding because of the lack of platelets and oozing fluids constantly for days. Today they decided to pack those wounds. Wet to dry is what they call it. Taking a q-tip and pushing gauze into the wounds and packing them. To hold her down and listen to her screams just about put me over the edge. Its in times like these that I wonder WHAT IS GOD DOING AND WHY HASN'T HE STOPPED this from happening. We will be packing and changing all three wounds every single day until they heal. When will that be? A very long time from now because we stolen from her the ability to heal. We destroyed it in an attempt to destroy the attacking cells. Thymo wasn't picky. He killed good ones along with the bad ones. It infused into her body and ravaged her cellular structure. Welcome to the world of transplant. Its not that glamorous. I just keep thinking that something as stupid as a wound infection could steal her from us. This is not happening. Please don't let this be happening.

The chaplain came by today. We've been friends for almost 4 years. We talk, I cry, he tells me I don't have to be strong its ok to fall apart. I tell him it won't be pretty if I really do. Whats the worst that can happen if you allow yourself to fall on the floor and get real with God. Your angry. Its ok. He gave you that emotion. Your hurt. Don't you think He hurts for you? Whats the worst that can happen? I won't get back up. There you go. I WON'T have what it takes to get back up of the ground. If I really get to the bottom of all of this the truth is that I won't want to wake up in the mornings. I'll be useless to my daughter. I'd would sit here in my fear and my grief over the losses in her life and forget to breathe. That's what is going to happen. So for now I'll keep going. I'll keep believing. I'll do my best to trust Him with her life. I'll try to be strong. I'll do exactly what He has called me to do. I'll be her mom because if anyone EVER deserved a mom its my sweet Ashley. I owe her that much. For all she's done in my life, in my heart, in our family, in our home I can't not give her my very, very best. I can't fall apart.

So in the darkness, in the middle of the night I'll sob into my pillow as I reach across my chair and find her hand lying on this hospital bed. I'll plead and beg and do whatever I can to the God whom I know loves me and loves her more than I can comprehend. Even though this doesn't feel much like love I still believe that He does. I'll ask Him for a miracle. I'll ask Him boldly. Because she deserves that much of me. She just does.

This will be along process. 6-8 weeks of suffering before we know if healing is going to take place. At the end of that time decisions will have to be made. Decisions I wouldn't ask anyone to make. Decisions that won't be easy to understand. No matter what direction we take there will be those who will never understand. I'm praying God will heal her so that it doesn't come to that. I'm praying that He will provide answers to Dave and I if it does come to that.

I'm wrestling in this room today and I'm doing my best not to get knocked down. That's where I've been today.