Roller Coaster: Part 1
Disease research comes with its share
of hypotheses come and gone.
On good days I find a small success,
on bad days I just find a yawn.
My meager work could someday contribute
To help the human race
But that day is not today and so i continue
To work, to keep up the pace.
To work, just in case.
And then one day my heart skipped a beat —
clinical trials beginning!
For months now I’ve known that this day would come,
but still I can’t keep from grinning.
Like your favorite team making the Super Bowl!
Your reality TV star survives!
It’s all of those things but the consequence
is hopefully saving real lives!
Reading from the press release,
the patient: a six month old girl.
“six months?” I thought “that’s really not long,
Her family must be in a whirl.”
So this is the story I imagined
of a family I’ll never know.
They travel life’s roller coaster
from highest highs to lowest lows.
Their coaster begins as boy meets girl
Accelerates through wedding bells.
Around the next bend a happy surprise!
So the pregnancy test tells.
They nourish, exercise, give up caffeine
to help the baby grow strong.
They build and plan and read and panic,
because 9 months isn’t long.
The big day came, they rushed ahead.
Baby came just a few days early
and here she was, their beautiful girl
she was long, hair dark and curly.
They brought her home and soon entered
exhausted baby bliss.
She was soft and sweet and perfect
… but something seemed amiss.
They couldn’t quite pinpoint their concern,
Not even sure if it’s real
Trouble at times with a swallow or cough,
Probably not a big deal.
But acting on parental instinct,
as parents often do,
they took their daughter in to get
a professional point of view.
All along her little limbs
the doctor poked and prodded.
Some “hmms” and frowns but at the end
he gave a smile and nodded.
“Your baby seems to be weaker than some,
but still in the range of normal.
Sometimes first-time parents
take guidelines a bit too formal.”
“These developmental milestones
are really just a guess.
After all, one half of babies
are slower than the rest.”
And so they took their girl back home
with somewhat less concern.
Back to busy parenting
and back to work in turn.
Another month she smiled and cooed
and cognitively she flourished.
But at the same time her body seemed
to slowly look malnourished.
Again they ventured in to see
what the doctor would have to say.
This time he seemed much more worried
and ordered tests without delay.
“Of course” he said “by this age
She should be gaining strength, not losing.
I’ve never encountered this before,
so I want to make sure I’m not confusing
these signs with something else less grim —
genetic tests will help us be sure —
because if it’s Spinal Muscular Atrophy,
I’m afraid there is no cure.”
They hardly noticed their coaster’s slow climb
Had brought them to the top.
Now holding their breath, stomachs in air,
they can’t see how far the drop.
(…to be continued here)
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