Blog posts by mommy Shana and mommy Jess

Three children, two moms, one C.P. diagnosis....and a partridge in a pear tree.

Thursday, January 26, 2012

To my Son, The Dreamer by mommy Jess


To have an opportunity to watch your child from afar feels voyeuristic and bewildering, like catching a reflection of yourself in a mirror you hadn’t expected where you spend several awkward seconds realizing that yes, that is indeed you. It is not without my heart in my throat that I watch Jack line up after school on the days I am lucky enough to pick him up from school. He manages to seem aloof and strapping to his friends but to me looks vulnerable and small. He doesn’t stand out in a group but I’ve been told he doesn’t bend to peer pressure either. Something I take pride in though I claim no ownership of.

I dropped him off late to school the other day and watched as he wandered alone into the building. He kicked his oversized snow boots against the walls of the building in a dreamy dance that had him wavering from one side of the pavement to the other. He turned his head, side to side and up and down, motions exaggerated by his stocking hat. He seemed to be taking it all in. He was in no hurry. I have no way of knowing what he was thinking about, but I had the distinct feeling he was not worrying over the agenda of his day or even thinking of what waited for him inside those doors.

My son is a dreamer. He has trouble “staying on task”, he doesn’t read the insipid books created by his school with exhilarating story lines like Things to See! I should care, but I don’t. I know that in all likelihood he will lose this trait. That instead of meandering off the school bus, pausing to inspect a hill of dirt, and then running into my waiting arms grinning ear to ear, surprised as he is exhilarated to see me he will instead walk stick straight to the back seat, embarrassed to be seen with me.

So for now, dream on Jack. Life is just biding its time, thinking up ways to squash your freewheeling fanciful fun. Don’t let it win yet.

Wednesday, January 11, 2012

Happy Anniversary by mommy Jess



What is it about the human condition that even if we try and train ourselves to ignore the ticking of the clock we still hear it? That we can know with certainty the meaninglessness of the measurement of time and yet still attune ourselves to its march?

Greta’s MRI that confirmed the stroke she had shortly before, during or after birth was on January 14th 2010. Last year I noticed a general feeling of dread as that date approached even though nothing bad really happened that day. I mean, the stroke was months old by then isn’t really linked to a random day in January. I do know though that that was the last day we could pretend everything would be okay.

Though we had been engaged in speculation and maddening medical negotiations and late night research sessions since October, the mystery all ended on January 14th. And even though we like to think of ourselves as smart people who knew long before anyone would listen that there was something going on with Greta, before that date we could still sleep at night lulling ourselves with a “everything is going to be fine” lullaby.

So now it is almost two years since that day when the illusion of normal fell away with some lovely images of a then 9 month old child’s brain and the damage that had been done.

I remember fragments of that day. I remember relief that our fight for the doctor’s to listen was justified. I remember absolute horror at the revealing of the MRI images, I was surprised (I am still) by how upsetting they were to look at. I remember numbly calling people who had been following Greta’s medical journey and robotically telling them what we were told. I remember us not crying. I remember the urge, so strong I nearly had to sit on my hands, to rip the stupid electrodes off Greta’s head and unplug her from all the machines and IVs and what-nots and run away with her forever.

How can it be that two long years have passed since this day?

I do not recognize the woman who lived that day as myself. I am so different now that January 14th might as well have been the day the whimsical, impulsive, self-assured, confident, easy to laugh and slow to cry, hopeful, optimistic, dreamy Jess died and a new Jess who is bitter, full of self-doubt, is distrustful, jealous, angry, and full of guilt was born in her place.

Please save me the rage at this declaration, the accusations that I should really just cheer up, or stop wallowing, or whatever. I’m just stating a fact. I don’t expect the former Jess to come back, I see her from time to time though, she comes to visit: she sings old songs from the 90’s in the car, she patiently gets Jack yet another glass of milk at 2:00am, she combs Greta’s hair into impractical pig tails and makes the kids ice cream cones in the middle of the day, she fills the bathtub to the brim with bubbles, but she never stays. I’ve let her know her life is ready for her, the sheets are clean, the floors are swept, the laundry is folded and the dishes are washed should she ever decide to come back to stay.