Zara’s Visit with Neurology

Zara’s appointments last week went well.  I warned the EEG tech that it likely wasn’t going to be pretty.  He sized her up and said with a smile, “We are not making history today.  I’ve been doing this for twenty-eight years and I’ve only had one person I couldn’t scan.  An adult-sized twelve year old who threw an absolute fit and it was the dad who gave up, not me.” 🙂  Zara cried, of course, but more in a resigned kind of wailing than angry screaming and flailing.  He let me hold her and sing to her which helped … maybe me more than her, who knows. And then we sat on the bed and tried very hard to keep her holding still for thirty minutes.  Have you ever done that with a thirteen month old? They move a lot.

Her EEG was clear, thankfully.

But still we got no answers.  They can’t tell us she’s having seizures, but they also can’t tell us she isn’t.  Her neurologist felt like it was time to go ahead with the MRI and put the order in saying it often takes two weeks to get it rolling because of the general anesthesia required.

We walked out not knowing what to think.  It’s an odd feeling to have no definite answers.  Less than a week later radiology called to set up her appointment and took me off guard.  I thought we had another week to muddle, you know.

Her doctor is so incredibly patient with us and answered all my questions on the phone yet again.

The short version is that Zara’s fisting has tipped the scales on the risk benefit ratio and it’s time to move forward.  She’s pulling her thumb inside her left fist more than she did even two months ago and while “there is probably no behavior that is absolutely never benign in certain cases, this type of fisting is typically associated with neurologic damage.” There are three possible causes.  Something similar to a stroke while she was in utero or at birth or shortly after. A small portion of her brain that didn’t develop completely.  In either of those cases, we wouldn’t necessarily need intervention, but we’d know causation and could take care of things as they arise.  The third possibility is a slow growing brain tumor.  They feel it’s unlikely since often tumors are associated with spikey baseline changes on EEG, but it is the cause they feel needs to be ruled out completely.

I’m relieved, knowing we’re about to get a definitive answer; and, of course, hoping desperately for a completely clear MRI.  I’m also carrying a knot in the bottom of my stomach at the thought of general anesthesia and contrast dye in our baby who already sports so many food allergies and pops hives every few days. But more than that, the niggling little what if desperately tries to make himself at home in my mind.

They say that worry only robs today of it’s joy and it’s true.  But I’m also discovering that a tiny bit of fear can heighten one’s awareness of joy.  We don’t know tomorrow, but the not knowing makes me so much more aware of the miracle of today.

Today there are baby feet pattering across the floor, noisy beggings for cookies, small arms wrapped tightly around my neck, eyelashes drifting shut.

In reality, no one is guaranteed tomorrow; but we’ve all been given today.  And today? Today is perfect even in all it’s messy crumbs on the floor glory.  Today is perfect because God gave it.  I think He wants us to live freely and fully, not in spite of the questions or in denial of the questions, but in the very question itself.  So here’s to embracing life with all it’s question marks … to tears when it’s frightening, to spontaneous laughter, to deep love and fierce hugs …. here’s to the reality of life and the supernatural presence of God.

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