Fresh wounds

Last week, we had a glorious day outdoors, revisiting Echo Woods, the Climbing Maple Tree, checking sap buckets. We found fresh wounds on many of the maples, burrowed by a giant Pileated Woodpecker. The shavings and sawdust littered the snow up the path through the woods. We explored the holes with our hands, revisited lessons from last summer about identifying trees from their bark, noted the differences in the phloem, that inner bark where the trees life flows.

The days this week are notably different. Every day, Amy's fresh wounds become more apparent. She sleeps more with each passing day, and vacillates between manic hyperactivity and groggy irritability when she is awake. She has set up camp on one end of the sofa, with her favorite "pillow pet" from Auntie Megan and Uncle Ben, her baby quilt, her favorite books. She tries to watch movies, and gives up because focusing on them is frustrating and causes her pain in her right eye. About every 5 minutes, she is either falling and hurting herself or becoming frustrated or angry. Tears flow so frequently. I feel that sinking feeling of familiarity: we've walked this part of the path before. I don't want to be there with her again, I don't want to watch her "Amy-ness" slipping away as the days go by. I want some doctor, somewhere, to be intrepid, courageous, intuitive, innovative enough to stop the tide this time.

Today we spent hours upon hours at the clinic, trying to navigate the care system at our primary care clinic. I brought a thick packet of research articles documenting cases of this particular type of meningitis in previously healthy patients, articles that describe how it is sometimes seen in healthy people after ENT surgery. Amy's primary care doctor watched her closely for a while, and spoke at length with two other doctors, a pediatrician and a pediatric neurologist. The neurologist has agreed to come in early tomorrow to see Amelia promptly. He feels another spinal tap is probably necessary, perhaps another MRI and a laryngoscopy (scoping the deep structures of her throat and windpipe). The good news is he is willing to look deeper for a source of infection. The bad news is he does seem skeptical about the particular bacteria that was found in Amelia's CSF culture. We do have an "ace in the hole": a leading researcher from the University of Michigan in Ann Arbor has been corresponding with me regarding Amy's case, and may be willing to treat Amelia if no one else is. I loathe the thought of going that far away from home...but Aaron and I remain committed to doing whatever is necessary to get Amelia the treatment we so passionately believe she needs.

Inspecting wounds, cataloging the damage, isn't a pleasant task. We brought in the wood chips and sawdust, wounds of our syrup trees. Smelled it, looked through it and learned about the particles that make up the heart of that tree that gives us sweet sap every March. Now we look at Amelia's particles again...deep in her neck, the hidden folds and loops and twists of her precious brain, the sweet fluid that smells earthy of life that will flow once more from her spine. Inspect the wounds, catalog the damage, smell it and look deep and learn what ails this sweet child.
No matter what. No matter what, I will trust You. No matter what, I will believe You are working a plan that will be for Your glory and [her] good. No matter what, I refuse to be bitter. How hot can the furnace get and you still say, "No matter what, I love God, and I am committed to Him"? Psalm 95:7 says, "Today, if you hear His voice, do not harden your heart." Satan wants to shame you and grind you under his heel. He wants to take you back to square one and make you think you haven't made any progress at all. As a blood-bought son or daughter of the living God, you were born for something much better than that! Guard your behavior. It's not the hardship but your response that really matters! Jesus paid a price for our sins. His death was an atoning sacrifice. I Peter 4:1 commands, "Since therefore Christ suffered in the flesh, arm yourselves with the same way of thinking." "Arm yourself" is a military term that means get ready for battle. Put your armor on. My mind-set must be: I'm going to get through this. This is my focus. I'm not surprised by this. God has this planned for me, so I'm staying under it.
from When Life is Hard, by James MacDonald