Parenting in the Shared Spaces 

Mothers Always Write

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 postcript 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.