The officials at the school
say they’ll help—
get the new device for my son,
train their teachers,
enlarge his work so his eyes can see it.
They never do,
pushes me till I’m
on my descent are
happy, waving teachers,
my smiling child sweeping his cane,
the echoing click-clack of an official’s heels somewhere
as I plummet,
all of this obscured as I fall
by a scrim of red—
violent, violent red.
My son James is 11 and has multiple disabilities—he is motor impaired (wears leg braces up to his knees), fine motor impaired (has trouble holding a pencil and can’t use a mouse), speech-impaired (if he phoned you now, you probably would only understand a few words), legally blind, and hearing impaired. Blessedly, his brain works fine.
For 11 years, I have been struggling to raise my son and advocate for him. He is still undiagnosed and the doctors aren’t sure why he walks like a drunken boy, has uncontrollable shaking all over his body, is often unintelligible, can’t see letters smaller than an inch high, and is constantly saying like a young old man, “What? What?” I have learned the ins and outs of education law, of the rights of the disabled in the community, of the medical system, of the homeschooling world, of Medicaid, of state resources for the developmentally delayed. And over and over again, I have tripped and stumbled and picked myself up again. But there have been days, weeks, months when I fell into the abyss, soft skin ricocheting against the rough stones of the well till I landed in the cold, dank sewage, the dark enfolding me. The light above was a distant promise; my voice grew raw with screaming. I was alone and things could not get worse.
My family and I have spent 11 years meeting obstacle after obstacle, facing a life-threatening diagnosis, cracking under the strain of trying to treat him medically and get him an education, and finding that many professionals didn’t come through on their promises to help him. But we have also spent those years learning about how we can help him function in the world, seeking and finding amazing technology that brings the world to him, meeting professionals who sacrifice time and personal savings to arm us with strategies and tools, and crying and laughing with other parents and kids who face similar and worse conditions.
In this column, I will explore what it is like being mother to James, with his many broken faculties, to my daughter Charlotte (and twin to James), with her perfect body and troubled heart. I will also explore how I manage this journey with my husband Daniel, who has struggled with anger and then found acceptance and peace in recent years, though his solace bore a strange isolation from me, as I am still searching for that personal zone of tranquility.
Beneath all the struggles is that sludge that I rarely touch and almost never acknowledge—grief. We lioness mothers who spend our time learning the law and battling the system and (in my case) homeschooling our children, are often also avoiding the real problem, and that is the grief over the loss. James will not have a normal body. He never will. I can spend three days in anger, five minutes in acceptance, and then get back to my familiar humming anxiety the very next day. But I am spinning toward some sort of resolution, some sort of abiding peace. In this column, I take you with me on that ongoing journey, that upward spiral of learning that my therapist has been promising me. Yes, you’re at the bottom of the well again, she will say. But you’re wiser every time you reach this low.
I am just trying to get from the well to the light. In those moments when I manage to make sense of my thoughts, it is most often when I am writing prose. But in those even rarer moments when I manage to let my heart burst with the sublime experience of it all, it is when I am writing poetry. That light I sought from above me in my pathetic puddle in the well is now shining from within, a light that shifts effortlessly from hue to hue—
I watch my daughter
watch her brother,
the shredded remains
of her National Geographic
in his hands.
Her face fills magenta,
some boiling liquid rising
behind her skin.
Her eyelids round their balls
as big as they can,
hot clear tears threatening
to spill over.
Her arms stiffen with rigor hatus,
exclamation points whose dots
are tight fists pressed to her hips.
The unfairness of her brother
getting away with it all,
getting all the cool stuff,
getting Mom’s attention all the time,
scalds her insides purple and blue
till she feels she could
My son sits on his bed with a book,
his body curled too far over
so his eyes are inches from the page.
I want to yell, “Sit up! Posture!”
but I don’t.
His fingers travel the page
over colors he sees—
pink and yellow and green,
over words he doesn’t see.
I tell him often,
“I’ll show it to you on the big magnifier.”
“I can scan it for you.”
“No,” he always says.
He turns the page with difficulty,
the corners often refusing to yield
to his eternally shaky fingers.
He thinks of his sister reading
thick Harry Potter books with tiny words,
words like a swarm of gnats
in another world in another dimension
that he will never see,
a world to which she escapes
from him, from the brother she hates.
His spine bends forward even more
his face near to touching the page
but all he senses is the color inside himself,
gray like the slabs of stone
his father laid
in the pathway home.
I watch my husband
watch his children
as they play happily on the floor,
building tall towers and a great city
with heavy wooden blocks.
He lowers himself onto the floor,
the pangs in his lower back
drawing his smile down in a grimace,
yet his coffee cup
is level the whole way.
“Nice bridge, guys. Did you two build that yourselves?”
My son brightens, dimples appearing,
“Shaw-wit hep me. Iss wide ee-nough foh two taws!”
My husband looks at his son’s thin body
rocking and shaking
ever so slightly,
as the boy beams.
“Two cars? That’s awesome!”
He looks at his daughter,
who is improving the bridge at its mention,
widening capacity further
with deft hands and crafty engineering.
And looking at his children, inside he blooms
pink and orange and lavender
as if a meadow of tulips had unfurled
of a sudden
And watching my family,
I feel I have had such luck
of which I am not worthy
but I am so
that I could die in this moment,
we could all die, the whole family,
in a powerful nuclear explosion
and rain down on the blue and green earth
golden Love that never dies
in shimmering showers,
of everlasting color.