|snuggles with Papa...|
Thank you for respecting this space and the truth that is hard to type sometimes.
I got up two or three times last night checking on my girl. In those moments of standing over her bed, making sure all was well, I continued my conversation with my Creator. Sometimes in my head we have rather spirited discussions. I struggle with my inner adolescent when it comes to this whole "trust God with everything in your life thing".
You would think by now and everything we have gone through, as many moment of deep conversions and hearing the prompting of God, there would be no doubt. No room for un-belief in my heart.
I prayed over my girl last night and kept hearing the prompting of "trust...trust." I wanted to roll my eyes like a petulant teenager. "Yea, Yea, Yea. Trust. Trust. Trust. Got it."
God would have none of it...
Do you? Do you really get it? If you really got it would we be doing this dance tonight? Would you be avoiding me? Would you be questioning my plans for this beautiful soul that I created? Would you be rolling your eyes at me like a child? You said your trusted me. You said you accepted my plan for Courtney even though you didn't uderstand. But do you...do you truly trust and accept all I have in store for you both?
Yes, sometimes God sounds like my favorite teacher form high school. That aside, He has a good point. Do I really trust him and his plan for Courtney? Really trust him in the deep dark valleys where I can't hear his voice or feel his presence and can only soldier on watching my child suffer while desperately clinging to the belief that he walks with me and my Courtney everywhere, trusting that he is with us at all times.
It's really hard to argue with God. He's always freaking right and that is so not fair. (tosses hair over shoulder, crosses arms and stomps foot). Adolescent here remember?
Trusting in who he is...and how he loves us...that is the greatest lesson any Christian will ever learn and take to their heart. He is a good great God. He loves unconditionally and never leaves me. EVER! Even though I do not understand, I believe in him and all he has in store for me and my Courtney.
So it's time to suck it up once more and soldier on friends. Soldier on. It's not perfect or even pretty, it just is.
Today Miss Courtney has done well. So far. She woke up with a smile on her face at O'dark thirty. I needed that smile today. I truly did. We consulted with her Neuro Team this morning and have decided to try a new med. Unfortunately it comes with so many warning labels, BIG bad warning labels. Warning labels and Mss Courtney are not usually a good match.
We try to go as natural as possible but now I feel like we are up against the wall and we need to help our girl in anyway we can. I hate this desperate feeling that makes my stomach do flip-flops.
There are so many warning labels on this new drug bottle that you can hardly see Courtney's name. This is a new formulation of another med she took when she was two that didn't help her then. This formulation has only been available in the US for about a year. So we are going to give it a try.
We will take the next week and get her levels of this new med up and if she is able to handle it and her seizures stabilize, we will try again on Sunday to take down her Depakote once more. We would do this much more slowly over the course of the following four weeks.
Just in time for our own personal Easter miracle. We shall see what happens. I am rather numb at this point. I have kept her close today and she has had a peaceful one. She is sitting next to me right now while we listen to a book on CD, smiling and enjoying having her feet up on the ottoman. She has been quiet but we were told to expect that.
So far so good. Ten hours down and 840 left to go...if all goes as planned and Miss Courtney can handle things. If not who knows what they will come up with next.
Deep breath, shoulders squared, eyes on heaven, prayers passing through my lips. We soldier on my friends...soldier on...