Calling all my prayer warriors…..something is wrong and as a shunt patient who also has a severe kidney reflux, we have to do all the checks. 

As I bury my face in all the sheets trying to comfort him through these tests and scans, there is that strong children’s hospital smell that I have come to know. It brings back feelings of fear and sadness but it also brings back feelings of being met and cared for by our God. A peace that transcends all understanding. And that is the bigger more overwhelming sensation right now.

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Home sweet home. 103 fever and inconsolability pointed to ear infection and really feeling and responding to Mom’s angst this time—not another surgery (should it have been tube malfunction) or UTI leading to kidney damage in his case with kidney reflux. Huge sigh of relief and a little bit of embarrassment. 

This week is River’s last post-op appointment. I have so many questions that I am sure won’t be answered fully, because every kid is different and so is every kid’s journey with hydrocephalus. I’ve heard more than I was prepared to hear in seeking experience of others dealing with shunts and I felt like Peter walking out on the water, looking at the waves and starting to sink. River is growing rapidly and changing and becoming more opinionated and finally feeling good enough to want to do more and gain back his strength, so there is more crying and frustration involved. Living in the grey area of not knowing what is what, and the PA’s words “it’ll be tricky with River since he was asymptomatic with hydrocephalus building up” has me on edge sometimes. 

There was a night a few weeks ago where a series of situations had me up at night literally shaking with fear and worry, Nate pulled me in closer to him trying to get my teeth to stop audibly chattering. But what I did right then at 2 am was that I journaled it out in prayer to God and He met me like He always does and He calmed my nerves and gave me new perspectives to guide me. “Re-orienting” is what God has been teaching me to do on an ongoing basis: essentially figuring out today, that day only, what my perspective needs to be, what I need to remind myself of, etc. My mom always says, “Just do the next thing, the right thing”—it’s been our family’s mantra for years (before Frozen 2 stole it). 

My parents are on a fishing trip, just the two of them. My mom wrote last night, “Remember I said Louie taught me how to hold a fish today? You have to hold it with open hands. Then it relaxes.” I did not realize she was making an analogy to life when I wrote back, “interesting!! I’d be really gripping that sonofagun!” Ironic that that’s also what I feel I’ve been doing in life! Forgetting that God is painting a story here and I must loosen my grip on the details and the worries and instead hold onto today’s joy, today’s victory, today’s promise from God that He is at work and He holds the future and He holds all victory, eternally. I would have been paralyzed from fear had I let fear dictate my steps back when we first got news of River’s challenges. And you all know what an incredible story it has turned out to be. 

And the truth is, we are all living in the grey area!! Every single one of us. So let’s make the daily choice to loosen our grip on this life’s circumstances and fears and instead hold them with open hands. P.s. Please show up for me like this when we actually have a code red event!!! I can’t tell you enough how much it means to me.