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What Avery has taught me about Jesus #3082


As you know, a couple of months ago, Avery was in the hospital for a tracheotomy. We had been home for less than two weeks, when she had to be re-admitted to UNC for an emergency brain/skull surgery. She was suffering from severe intracranial pressure that had been slowly building since birth. 

She recovered slowly after the VP shunt placement. A catheter was slipped through a hole in her skull and into a ventricle to drain the excess fluid around her brain. A valve controls the rate at which the fluid drains and the remainder of the catheter runs inside her body to her peritoneal cavity, where her body absorbs it. She has made great strides since coming home and is FINALLY comfortable, most of the time. The shunt will be permanent. Once her body becomes reliant on the shunt to drain her CSF fluid, it no longer drains the fluid on its own. Avery made need surgery to replace the shunt in the future if it fails or becomes infected, but we will cross that bridge if we ever come to it. For now, we watch her, with vigilance and intent.  

There are many nuances to the story of how the shunt surgery came about, and I'll spare you all of that, but I do want to simply share that I believe it is VITAL for any parent to pay careful attention to their children's cues. Before they can talk, or possess a vocabulary broad broad enough to communicate the important things, becoming an expert on your child can save their life and not just in a medical sense. Knowing them can give you insight to any emotional distress they may feel as well. 

Avery is not feeding well and has incredibly poor muscle tone. She often vomits and rarely swallows her saliva. She does not hold her head up. I've had to take her back to square one in the oral feeding department, because she has a serious aversion to anything that comes near her mouth. Avery seems very distrusting of objects and sudden movements, likely because most of her life has been full of invasive, excruciating procedures. When she sees a bottle or catheter for suctioning, she gags and arches away. I often get caught up in my game plan to deal with her delays and most of my time spent with her is very regimented and intentional for the greatest amount of progress as possible, until it dawned on me that comforting physical touch was physical therapy, in and of itself. I wanted her to trust my touch, to understand that I was someone safe that would push her when she needed it, but also hold her without asking for anything from her. She didn't have to DO anything for me. She could just BE a baby in my arms. 

This afternoon, I held her and we played and she smiled and came as close to laughing as a baby with a trach can come (the trach means she's silent) and then I was struck with how much the moment applied to my own life.  

I spend my devotion time meditating or memorizing scripture, praying for others and asking the Lord for wisdom about whatever I'm facing, all of which is well and good. Though, during my Avery time, it was as if God said, "Hey, sometimes THIS is all I want from you as well. Yes, sometimes I'm going to push you and break you and put you through fire to develop your character, but I also want you to come to me sometimes and just BE. Just be my kid. You don't have to analyze anything, problem solve anything or perform. I want you to just come and BE with me. In the same way, I want you to know that I am your safe place."  

Light bulb.  

DOING is great. DOING is important. He called me to be excellent at my tasks, which at the moment are all things homemaking and care-providing, so I'm going to give everything I have, every day until He gives me a new task or until my body gives out. But, He also called me to be His kid and come to Him as a kid, to be held and loved on, with no strings attached.  I hope you know He wants the same from you. 

Much love,  





Tracheotomy Aftermath