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How am I?

Amazing...and terrible

Like when you wake up grateful to be alive and peek at the sunbeams saying “good morning”

And your paralyzed body aches everywhere from being in one position all night

Like when you hear your sweet daughter’s footsteps,

a miracle daughter that took you seven years to conceive,

and she climbs on the bed and holds your hand while cuddling her dog stuffie, Ruff Ruff

And then you have to be rolled and twisted and strapped to a machine that will lift you out of bed

and into your wheelchair

Like when you finally get to pee and get a satisfying shiver from the release and the cold tile

under your feet

And then your chest starts to tighten because you’ve been away from your breathing vent too

long so you call for help to be cleaned by other hands and get back in the machine that will fly

you back to your chair and air

Like when you smell the comforting aroma of coffee and hear pancakes cooking on the stove

But swallowing has gotten laborious so you opt to eat through your feeding tube so you can get

calories in a body that has turned into a sack of bones

Like when you open up your support group chat and laugh at the stories and offer advice and

see womanhood in action

And then get reminded of another heavenly birthday and memorial

Like when you start to make plans for your 13th wedding anniversary and reflect on all you’ve

overcome and achieved together

And the options are complicated and you know the best gift would be to give your husband a

day off from caregiving for you

Like when you bathe in delicious sun for the first time in months

And wonder if you’ll ever see your native island or experience the power of the ocean again

Like when you turn the music up loud and zoom around the house with your daughter on your

lap and you both sing along to boy bands and salsa and divas and angsty rock

And then the thumb you use to drive your wheelchair tires out bringing your ride to a halt

Like when you spend the afternoon exchanging gossip with your mom

And then you feel your tongue getting slower and know others can’t hear the changes yet but

you know they are coming and you try to hang on to these long chats

Like when, at bedtime, your daughter runs up to tell you that you are the mother she wished for

and if she was born again she would ask for you every time

And you are left speechless because no words could ever make you feel more loved

And then tears come from the depths of your soul and you beg for suction and choke on phlegm

and panic for a tissue to wipe the tears off of your wet neck

Like when you live with hope and despair

Like when your dreams and nightmares come true

Like when you want the joy and laughter and connection to last forever

And you desperately want the suffering to stop

Like that