There’s something about parenting both a typical child and a child with special needs that brings to mind a Venn diagram. The oval with the overlap bulges or shrinks depending on my mood. That center, their common ground, contains the love I feel for both of our children, the desire to protect them, the surprisingly ferocious exasperation that comes on when they’re belligerent, and the emotional fatigue that accompanies the constant duty that parenthood requires.
On my daughter’s side, perhaps it’s the left-hand circle, I’ve got her milestones checked off just as expected. Sure, riding a two-wheeler took a little longer than we thought it might, and we’re still waiting for her to enjoy curling up with a book independently, but on the whole, we’ve got ourselves a precocious, spirited, healthy seven year old in that space. On the right, my four year old son has started to use full sentences, walks unsteadily, and begins to revel in pretend play. The place between my children grows wider each year, but my acceptance slowly grows alongside it.
Zev was born with a rare chromosomal abnormality, so rare there is no one quite like him to look to for comparisons. After his diagnosis, my husband and I were left holding an uncertainty that nearly did me in: would he ever learn to talk, or walk? Would he have any sense of independence whatsoever? I’d thought parenting was hard when my typical two year old still wouldn’t sleep through the night and had tantrums that shook the walls, but Zev’s birth introduced a new level of stress. Remember that new-parent vocabulary we all waded through: hindmilk vs. foremilk, ferberizing, attachment parenting, 1-2-3 magic, and (I had to google this one) elimination communication? These were replaced with terms like microcephaly, hypotonia, sensory-integration disorder, intellectual disability, failure to thrive, g-tube. We staggered through the first few years on hyper-alert, the days full of specialists, surgeries, sometimes utter despair.
But I’ve mostly come out the other side at this point. The challenge now is to live in the space that joins those two circles of the Venn diagram, both socially and at home. Zev is praised for his efforts at potty-training, while his sister memorizes Hebrew phrases. Anya eagerly attends sleepovers with girlfriends, while her brother greets strangers with hugs. I no longer blanche when parents complain about the struggles of their typical children. He’s just such a picky eater; I can never get him to eat enough vegetables or You have no idea how hard it is to keep her in clothing; she just grows so fast. How funny that I once furiously and self-righteously expected everyone to understand Zev’s side of the diagram, when all they know is typical parenthood. I’m embarrassed by my earlier indignation but proud of my newfound tolerance.
Recently, the well-meaning case manager at Zev’s IEP meeting felt compelled to remind me that only a special mother could have been granted a child like Zev. “Imagine if you weren’t an English teacher, and what if he wasn’t exposed to so much stimulation? He was given to you because you are a perfect match for his needs.” Even a year ago I would have been hard pressed to hide my disgust, sick of the platitudes and resentful of the parents without our “burden.” I see now why she, and so many other well-meaning friends, need to make a neat package of the imbalance, even if I can’t always buy into it. It’s another way of deriving meaning from some painful truths. Not all children are born with equal gifts. It sucks. But please believe there is beauty and growth in this at the same time.
If I could capture Zev’s intonation on paper, it would be a sometimes staccato burst of clear syllables, and the next moment the sounds are roiling and smashing into one another unintelligibly. If he had more control of his muscles, some of what he utters would sound downright smart.
“Are you my sweet boo?” I said. “Boy, I mean. I meant to say boy!”
“You called me boo,” he giggled. But his utterance sounds like, “You call mee boo.”
“Are you boo?”
“No,” drawn out, softened.
“What are you?”
“I sweet Zev,” he announces.
Zev is not merely a postscript to the epistle that is his neurotypical sister. His missing pieces first shattered but now rebuild me, truly better and more balanced, most days. The Venn diagram appeals to logic and a finite collection of similarities and differences, while the real work of parenting defies such boundaries. But still, that ever-shifting space between the circles keeps me centered, and, dare I say it, whole.
Alisha Goldblattis an English teacher living in Portland, Maine with her two beloved children and husband. Her first children’s book, Finding a Way, is to be published in the spring; it introduces her son and the unique way he experiences the world.
she cleans the ox tailbones then turns low the heat
and in a twelve-quart stock pot they are steeped
together with scallion whites,
down-draft ventilator leeches the folding smoke
from the perfume-laden cauldron
of liquid torrent with splintered lives,
a slop of bubbly white froths the kettle’s frame
mother skims the fat and heaves it aside
and fragrant steam to ceiling rise,
while the wafting spice mingles the kitchen air
I climb the stool near the island’s ledge
and peer in to nostalgia’s deep,
Mother at the stove, bending over in her apron black
scooping the liquid river of our cultural roots
into a terra cotta bowl,
plump noodle drains from another boiling pot
Mother tastes the strands for softness
rising mist steams her eyes,
along with tiny lick of basil leaves and fresh sprout she tosses
black pepper and lime juice for added garnish
familiar scent strikes my hunger’s joints,
just as I breathe in deeply the perfume-pregnant air
white wisps coat fine my horn-rimmed glasses
choking off the savory view,
the devouring rushes in, though it makes no sound
chopsticks gather noodle, spoon scoops broth
my lips taste of thawing winter cold,
dregs of marrow sail across the wrinkled stock
so tip the bowl the liquid sloshes
and strips it bare my belly full.
If only briefly, the fractures of beings can be sewn by
the fatty threads of mothers’ home brews
as broth of life and life’s flowing.
Lana Bella has a diverse work of poetry and flash fiction published and forthcoming with Anak Sastra, Atlas Poetica, Bewildering Stories, Beyond Imagination, Buck-Off Magazine, Calliope Magazine, Eunoia Review, Cecil’s Writers’ Magazine, Deltona Howl, Earl of Plaid Lit, Family Travel Haiku, First Literary Review-East, Foliate Oak Literary, Garbanzo Literary Journal, Global Poetry, Ken*Again, Kind Of A Hurricane Press, Marco Polo Arts Literary, Nature Writing, New Plains Review, Poetry Pacific, The Commonline Journal, The Higgs Weldon, The Voices Project, War Anthology: We Go On, Thought Notebook, Undertow Tanka Review, Wordpool Press, Wilderness House Literary Review, and Featured Artist with Quail Bell Magazine. She lives bi-continents, in the US and Asia, where she is the wife of a novelist and the mom of two frolicsome imps.
Heidi Morrell lives and writes in Los Angeles, is married and lives in a big old house with her two kids, patient husband, one dog and two cats. She’s been ardently writing since age nine, but only in the last three years, began to submit her work to the wider world. Some of those publications include magazines, anthologies and e-zines, among them: East Coast literary Review; Poised in Flight Anthology, Hurricane Press; Emerge Literary Journal; Poetry Pacific; Rotary Dial, Canadian; Outside In Lit & Travel Magazine, and a forthcoming Chapbook from Finishing Line Press. She also writes short stories, several of which have been published.
Driving home today, listening to music, I was reminded again how tenuous are our holds on the people we love. The life force feels so strong and so sure when they are right next to us, and we forget how suddenly things can change. As a mom to five young children, I am terrified at least once daily about something that could separate my children from me forever; some small act, some wrong turn, a missed stop sign, a tragedy. These things terrify me and make life seem dark, uncertain, paralyzing. To calm myself, I remember that quite literally the only thing we have is the here and now, this second of this day, right now when my 20 month old is sitting on my lap, waiting for my attention, her tiny pigtail sticking straight up and tickling my chin.
Maybe this weak hold on the strings of life is part of what makes it so beautiful, so rare, so worthy of adoration. The beauty exists because we are here, we are here together, right now. Nobody knows what will happen tomorrow, next week, next year and that uncertainty is what stops us in our tracks, what makes the tears come when we hear a certain song or a certain story. But then, mercifully, we are thrown right back into the beauty of here, the beauty of a dirty diaper to change, a busy schedule, the beauty of the strings that hold us to each other, that recognition of an unseen bond. And, really, in the end, the fact that the bond is unseen is what makes it so beautiful. That bond doesn’t exist in this physical world but in the realm of the ethereal, that which we cannot see but know with a certainty is there. The terror comes from not being able to see it, not being able to feel it and hold it to you. When a moment comes to stop and think, it is so crystal clear that love goes on, despite broken strings, despite distance, despite the end of life.
My sister-in-law, who held her beautiful infant son as he passed away, sent me an article about a pediatric oncologist who is touching kids’ lives in more ways than one. He was talking about dealing with the death of a child and how to prepare for it. One of his patients was nearing the end of his life, after years of treatments and medicines, and his mom was in his hospital room. The boy asked her what death would be like and she stood up, closed the curtain and talked to him from behind it. “It will be like this, you won’t be able to see me, but you can still hear my voice and feel that I love you. I am still here.” What a gift to be able to give your child when you are in the throes of the greatest terror a mom has. I’m sure she went home and cried; I’m sure at some point she had railed against the unfairness, the fragility of life. But in that moment, she saw those strings of life and how the thing that holds us here is not physicality but love.
At the end of my teary solo car rides, I get out and am greeted by smiling faces, a thousand questions, and sticky hands. Life comes clearly through in full force, and I am surrounded by its richness, its texture, the glory of it all around me. Mostly, I am thankful that for now, our paths run together, I can see my loved ones on it all around me, and it is beautiful. Love in all its terror and its glory is beautiful, and I am eternally grateful for this moment.
Katie Murray is a 36-year-old stay at home mom to five children, ages 3-10. When she’s not driving to soccer, ballet, or baseball, she enjoys running, hiking with her family, dancing in the living room and writing. She is grateful to her husband and children for giving her so much good material and looks forward to more every day.