Unanswered prayer

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie
Oh Lord, before these feet of mine

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

Your hands that shaped the world
Are holding me, they hold me still

~ Your Hands, J.J. Heller ~

The bacterial culture done on Amelia's spinal fluid last week grew a particularly rare anaerobic bacteria, Propionibacterium acnes, on Wednesday, 5 days after the fluid was removed from her body. This bacteria is a common skin bacteria, and usually only causes meningitis or encephalitis in children with hardware in their brains (VP shunts) or post-neurosurgical patients. However, there are a few cases in otherwise healthy children, and most of them are in children who recently had otolaryngological surgery (ear/nose/throat). It is a form of chronic meningitis, with a 2-12 week onset involving severe headaches, nausea, weight loss, double vision and eye tracking abnormalities, and increased sleep, and, very rarely, low-grade fevers. Amy has every one of those symptoms. She is getting worse every day again, as the pressure builds up around her brain.

The problem is that the pathologist who found the bacteria and the infectious disease doctor who was called about it (neither of whom know Amelia or any of the details of her case) are calling this a contaminant. Not a real infection. Her neurologist tend to agree because it would be "so rare" for a child without brain hardware or implants to have this type of infection. After many hours on the phone and internet yesterday, and finally some encouragement from our primary care doctor, Aaron and I took Amelia to the ER at the U of M last night. They admitted her but didn't treat her, and discharged her today with no treatment other than steroids.

To say I am beyond frustrated is probably the understatement of the year. It feels as though we've finally found an answer to what is wrong with this precious girl, and instead of treating her, we are disregarding it. I feel helpless, hopeless, and very, very alone. It seems ridiculous that we should wait for a Monday appointment with her primary care doctor (who probably can't help anyway), her appointment a week from now with the ENT surgeon, who will check the nodules on her vocal cords, which I am sure remain, and another appointment 6 weeks from now with the neurologist. This little girl is not recovering like she should. But what am I supposed to do??

Fear is the hardest emotion to hand over to God. It's rooted in pride, really - what I am really saying is that, if I were only allowed to, I could change the date of my daughter's death, or her eventual recovery or permanent disability, by my knowledge, will, drive. That's simply not the case. I really have no more idea than the neurologists - with the exception of a healthy dose of mother's intuition - whether antibiotics are the necessary treatment in this situation. But I am afraid. I am afraid for Amelia's life, I am afraid for Amelia's personality, behavior, intellect, motor skills. What if we are missing the very key to this entire mess by giving in on this issue? Yet, what more can we, as mere parents?

Amelia was given an orange bear at the ER last night. From Hugs Across America. In the tag, in a child's scrawl, it says "God will heal you". So, at the end of the day, eyes burning from reading research and heart breaking and mind aching, I cling to that. In childlike faith. When everything else falls apart, that remains.

Isaiah 41:10 Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. For I, the Lord your God, hold your right hand; it is I who say to you, “Fear not, I am the one who helps you.”