When Healing Doesn’t Look Like You Expect

We went to Susannah’s MRI. The radiologists who read it determined that she doesn’t have a tethered cord. (The backstory is here, if you missed it.)

This is good news, right? It means that she doesn’t need neurosurgery.

But it also means that we didn’t get an explanation for all her symptoms, and it means that we can’t resolve all her symptoms with one surgery.

The MRI found a cyst on her right kidney, so we now need to follow up with a pediatric nephrologist.

Additionally, we went back to the rheumatologist who first discovered her scoliosis to ask about a connective tissue disorder called Ehlers-Danlos Syndrome. I thought, from my reading, that Susannah (and I) had a lot of the hallmarks of EDS. The rheumatologist ruled out EDS, but did order an echocardiogram for Susannah based on my history with mitral valve proplapse. There are a number of other connective tissue disorders which present with hypermobility, scoliosis, and heart problems – so we need to check that out.

At the moment, there’s no healing in sight.

However, we’re thankful that the echocardiogram can be done here in town (so we don’t have to add another day trip to Louisville to the calendar) and thankful for every big diagnosis that has been ruled out. I’m thankful that Susannah’s pain levels are manageable and seem to be a little improved lately (my hypothesis is that the warm weather is helping).

I know, it seems a little crazy to write about believing for full healing and then to come back with a report that my kid is still dealing with chronic pain and to talk about being thankful. It seems a little crazy to say that I believe that God uses every part of our stories for our good and for His glory. But I really do feel thankful for the good things and I honestly do believe that. Because I believe this:

“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.”
‭‭Ephesians‬ ‭3:20-21 NIV

God can do – and usually does! – immeasurably more than we can ask or imagine. Have you ever experienced a holiday or birthday when folks asked what you wanted? And maybe you couldn’t think of anything, or maybe you didn’t want to ask for anything outrageous, so you named a small little trinket or memento you might like. But the day rolled around and you were absolutely blown away by what you unwrapped. It was way more, way bigger, or more lavish, or more ‘perfectly you’ than the little thing you had asked for. God is in the business of giving out gifts like that. He not only knows what we’re asking and imagining — He also knows how the whole story ends. So what He gives and when He gives it all make sense when you get to the end of the book.

I’m praying for full healing of Susannah’s kidney cyst, or that if it’s still present when we get to nephrology that they’ll decide it’s a simple cyst which needs no intervention. I’m praying for the results of her echocardiogram, that it would show her little heart beating in perfect rhythm. I believe God is able to give us both those good gifts.

And even if He doesn’t, I still trust that the Author of my girl’s story is working out something glorious.