Tonight is one of those night befores. The kind where I feel sick to my stomach, overwhelmed with thoughts, scared that I will somehow miss something tomorrow. The feeling that tomorrow will be much worse or maybe just much less than I expect.
Tomorrow we meet with Charlotte's main doctor (her rehab doctor) at children's mercy for the first time since our diagnosis. We know that this appointment will be long and full of useful and not so useful information.
We know we will be students, learning about muscle disease. I know I will be the student that frequently butts in to ask about this or that that I've researched/googled myself. We know we will be parents, entertaining our two year old and trying to hold back all emotion until we get to the privacy of our bedroom. We know we will be cheerleaders, coaxing Charlotte to show off all her latest tricks (milestones.) We know we will be advocates fighting for the best care and for the doctors to see the potential we see in our daughter. We know we will be looked at as the parents of a puzzle these doctors really want to solve. We will try our hardest to remind them that she is more than that. We will be decision makers, CEO's of our daughter's life. We will make decisions about what medical procedures are necessary and what blood test are vital. We will be fortune tellers, trying to decide what equipment she may need for the next 4-5 years. We will be all of these things but we will mostly be Katie and Neal and Charlotte. The same three people that walked into that doctors office will walk out. Maybe armed with new information, most likely our minds will be boggled with new questions.
But...We will walk out knowing that God can do immeasurably more than what we or the doctors can even think or imagine. So tonight on THIS night before, I will go to bed holding on the that. Tonight I will go to bed knowing that God is her warrior and I am his follower and that is enough for me.
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