i know your body better than i
know my own…at least these last few years

it seems so wrong…mothers study their newborns, marveling at the wonder of a new life, and the magic in each tiny finger and toe…

yet i find myself taking stock of each now familiar feature, your landscape, with every touch..some thirty years past your birth

your brown eyes close with pleasure as i stroke your boyish mop of dark, curling hair…every scar, every ridge of mended bone, bearing witness to your struggle

i massage and stretch once strong, firm limbs…now relieving cramps and contractures

how much i’d rather hear complaints of sore muscles…of bosses, and schedules, and bills

this is your life, i am a participant…no longer an observer watching as you rise




every day, i’d kick off my shoes next to my chair in the dining room, and every day, she’d ‘steal’ one, and wait for me to notice

she would tease me, laughing as only a loved dog does…and with glee in her eyes, she romped through the house, with my shoe just out of reach

this morning, for the first time in…years…my shoes remain where i left them

her stuffed pig and donkey lie silent, dormant, in her empty bed…waiting for a game that will never begin again…and my heart breaks

she was, a good girl



i feel as though i could sleep forever

as though my life has stopped, suspended, frozen in time

i catch a glimpse in the mirror over the small sink, and wonder who that is, looking back at me…she looks so old

we’ve been in this room, 4680 in the intensive care wing, for a month now…or is it two?

i was anxious to get here at first, then impatient with our progress…now achingly accepting of our plight

your plight…i am free to wander, but these off white walls and rhythmic machines hold you within

i sigh…not in resignation or exhaustion, i sigh as one with you, my lingering son

we sigh as one, as this day ends and another dawns…as your eyes close and our dreaming begins



i didn’t finish my basket weaving today…and that’s as it should be, i suppose

we aren’t ever…finished. there is always something left undone, something to change about ourselves, a new path to take

i think i will leave this one as it is…to remind me of how we change as we grow, taking on new form as our days are added

i have changed as each moment, each day…each year…wove itself into me. and as my basket is, i am, not yet done

i will never be done


the fight

i’m tired…exhausted, really

i’m angry. and worried. i’m scared

as i print journal articles, and copies of months of medical records to fight in this appeal to insurance, i look over at lingering son

he’s fought so hard. we all have…and it shows in both his healing, and in his eyes

i am fighting a machine so enormous, i scarcely know where to begin

so i begin with logic and facts…and land on humanity and compassion

on the value of a life being about more than dollars and cents

on what it costs us all when we begin to lose sight of that intrinsic value, and pursue instead one we can count on balance sheets


lingeringson’s life is in the balance

it’s tipping, and i’m going to set it right

insurance has a finger on the scale, and i’m going to right it

or die trying


a sense of purpose…

intangible, elusive

yet when we find it, it’s as familiar as a well worn shoe

it at once settles and excites…stimulates us into action without indecision

i often wonder…what is the sense of purpose for lingering son?

he is assured of our love, his value, his presence in our lives…but what purpose is in his heart?

i chafe at hearing the word ‘inspiration’…at the idea his life is what it is to help others be “better”

as if he owes the inspiration of disability to society

no, his life is…his

his purpose is not mine to grasp, because it is, at the end of the day…his own, woven in and through our lives



we parents…we watch our children grow with wistful eyes and full hearts

bearing witness through the stages of life, as they run and float and fly

one day nursing a tiny wrinkled newborn…the next, it seems, standing by a grown son or giving away a bride

the days between fall, one by one, like autumn leaves, until we give our child to the world to carry on

but for this lingering son, there will be no wedding day, no firstborn, no flight from the nest

his life is different, yes, but his alone…and we who love him bear witness to that life, to his existence, to the meaning of it all