Tipping point

“I am leaving, I am leaving, but the fighter still remains” – Paul Simon

It started out with laughter.  That statement sounds so unassuming, welcoming even.  We hadn’t heard Sasha laugh in years, years.  Then, last Friday, out of the absolute blue it came.  And in an instant, Mike and I both felt our hearts sink.  The laughter was slightly delusional and was the exact laugh we used to hear many years ago, routinely, during episodes of derailment. I tried not to overthink it and just treat it like a long lost behavior briefly returning.  That happens sometimes.  But then, over the weekend, Sasha’s nights were interrupted with a worse type of laughter alternating with weeping.  The weeping was especially alarming as that too, was something from yesteryear.  The weeping was once the main precursor to a grand mal seizure. 

That was 10 days ago now and the past week and a half is mostly a blur.  By the time last weekend came and went and Sasha started becoming lethargic, I messaged her new neurologist, explaining my concerns.  I don’t know if you could say this was the worst possible time for our beloved pediatric neurologist of almost 15 years to retire, but it certainly forced us to quickly develop rapport with our new, adult neurologist.  After hearing me list off what was going on, his nurse wisely recommended I get Sasha checked at her PCP for a possible UTI as her decline came on so suddenly.  There is often a correlation between cognitive decline in neuro patients when a UTI is present.  something I completely overlooked as a nurse Sasha was seen the next day, and while this particular provider had yet to meet Sasha before, he was concerned.  Her circulation was poor and she was barely able to stand.  After some debate, in the interest of getting the quickest results possible, I agreed to a catheter for obtaining a urine sample. Sure enough, Sasha tested positive for a UTI.  While waiting in the exam room for the results one of the nurses said “I so hope that’s what this is”.  Despite what should have been a relief, I couldn’t help but acknowledge that sinking feeling that more was going on.

Sasha has finished her course of antibiotics now but her improvements for now are miniscule. Further correspondence with neurology led to recommended lab work with a Black Friday nighttime drive by Mike to Dartmouth Hitchcock during our first snow storm. Those results led to few answers so we head back again tomorrow for a visit with neurology in person.    

Somehow, in the midst of all of this, we had a magical 5 hours or so on Thanksgiving Day.  Family gathered and celebrated the baby, the holiday and true gratitude after not being together last year for so many special moments.  I kept thinking how all I want for these holidays are my happy, healthy daughter back.  During one of my countless log-in sessions this weekend into Sasha’s patient portal to check on some test results, I decided to upload a profile photo of Sasha at her patient home page.  I’ve had this sinking feeling we’re about to become frequent flyers there, and soon many providers and specialists will be in and out of Sasha’s chart.   But Sasha is so much more than lab values, MRI images and EEG readings.  She’s the purest, most beautiful soul.  All loving, forgiving and tolerant.  It’s cliché but she will always be my hero. 

Last week, while pulling into a parking spot at the post office at our picturesque local town green, the Mumford and Sons cover version of Simon and Garfunkel’s “The Boxer” came on the radio.  In middle school and early high school I was infatuated with their greatest hits album:  Kathy’s Song, The Sound of Silence, Bridge Over Troubled Water, For Emily, Whenever I May find her.  They all had me enthralled, hanging on every brilliant word and lyric.  When The Boxer came on this crisp November day, as locals bustled in and out of the post office with holiday excitement, I reflected on so many things.  I simply wanted the things that I’m thankful for the most, the people who I hold dear, to be close by and flourishing this holiday season.  It is now my only wish.