The New Normal

Yesterday, we had the luxury to begin considering what comes next.  Do we wait and see what happens with every quarterly MRI?  Do we push for focused radiation of some kind now? What’s the best course to follow for minimizing Neva’s chances of additional surgeries and maximizing her quality of life?  We began reading new papers, emailing doctors, gearing up for the steps to come.  Because no matter what, this is a lifetime deal, where waiting and hoping and fearing will always be an undercurrent, and where future treatment decisions are entirely possible.

Doesn’t sound like a luxury?   It’s not, of course, in many ways – who wants to think about remaining tumor fragments and associated risks to come.  There’s nothing we want more than for this to be one and done.  For the hardest stuff, if she’s lucky, it could be; or perhaps she has some big hurdles to come.  But after the intensity of the last few weeks, the simple ability to look forward months and even years was a welcome change.  And as we confront new decisions, we will continue to share what we learn in the hopes of helping others.  For now, what matters is this:

NEva_skatingNeva is doing great.

She is tormenting the dog.  She is putting on self-styled ballet performances.  She is going through ten outfits a day.  She is back to riding her bike around the livingroom. She is building solar system models, questioning the physics of Santa (and just about everything else), and transforming into a jigsaw puzzle wizard.  Yesterday, she went ice skating for the first time.

The best thing about all of these moments is that the raw emotion of each one is beginning to fade.  It’s starting to become routine that Neva is Neva once again.   No longer are we on the verge of tears at every passing instance of a kid simply being…a kid.

Until today.  This morning, she returned to her school for the first time in weeks.  It’s a place she loves, and with good reason – a great school, incredible teachers, a room full of terrific kids.  And it’s those kids who nearly took us down.  Neva was nervous about going back.  Shy, hesitant, sad.  Then we walked into her room.

One friend, another little girl, was on the couch, snowsuited head to toe.  Upon seeing Neva she bounced up and down, a smile ear to ear.   Soon after came the outside playground, where the rest of the kids were creating their usual good-natured chaos.

NEva_BJS_returnThey bum-rushed her.  Neva! Neva! Neva! they screamed, surrounding her and all talking at once.  You’re back, yay, you’re back!  One little boy, a complete dude in all ways yet also overwhelmingly sweet, tried to take her hand, saying Come see everyone and let me introduce you to my new friend!  Another boy ran frenetic circles around her yelling her name.  A third began singing a song, of which the only intelligible word was Neva.

And the first boy? Four years old, and out comes this: Neva, I missed you so much.  I prayed for you every night.

Try keeping your eyes dry after that.

3 thoughts on “The New Normal

  1. Jenny Haan

    Nope. Wasn’t able to keep my eyes dry after that last comment. It was so great having her back! We are complete once again in room 12!! 🙂

    Reply

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