it’s funny. when we were told “atypical cystic fibrosis” (meaning she does, in fact, have cystic fibrosis but there are no symptoms present at this time) in our brains, we were operating on that she doesn’t quite have it.
i mean, in hindsight, how does one not quite have a disease??
maybe this was our way of getting through this rough reality.
ok. so our baby girl has atypical cystic fibrosis. no symptoms, though, so this is good.
and once we came home, armed with our samples of enzymes and bag of apples for sauce, we went right into it, because that is just what ya do.
maybe i was ignoring the sadness? the confusion? the anger?
i mean, i was sad. i AM sad. don’t get me wrong, but i think i was ignoring that hot rush of sadness that ripples around your chest, down towards your stomach and engulfs your heart.
yeah, i was ignoring that.
i still might be.
i cry as i type this. ‘cause, it’s not about me.
it’s about this precious wonder.
it’s about her biggest hurdle right now should be crawling.
and it’s about these top and now bottom teeth coming through.
those should be her biggest obstacles.
…not screaming for a boob and waiting while momma fumbles with enzymes and spoons and dropping capsules and getting it everywhere but her screaming mouth.
but these are seconds that won’t last forever. she will learn to swallow them whole.
this is just a brief phase.
we both will get better…
i, with my timing, and she, with knowing the sound of the capsules hitting the little bowl, the smell of the fruit, the feeling of the cool spoon and the taste of the sweet applesauce.
her little life will be challenged more so than the rest of us.
she has no idea.
more doctor appointments. more care. more tests. more poking and prodding. more enzymes. more supplements…
as we checked out of the pulmonologist’s office this day, i saw it. right there on our paperwork, clear as can be;
reason for visit: cystic fibrosis
while this all makes me sad, i also know she will be a fighter.
i see it already.
feisty, little sweetheart, is what she is.