Neighbors

Every morning, Elsie and I walk to school.  Elsie runs ahead, picks a flower from Elaine's garden (which exists exclusively for the indulgence of neighborhood children), then waits for me to hold her hand and cross the street.  Or she drags behind, inspecting every blade of grass peeking through Sammy's chain link fence, every leaf dropped on the concrete, as I check my watch and grow increasingly impatient.  Sometimes, we take the stroller.  She sits munching grapes from our vine as I push her, chu-clunk, chu-clunk, chu-clunk, over all the cracks in the sidewalk.

Whatever way we walk to school, we always pass J.  He and his mother sit in the open door of their garage, rain or shine, waiting for his ride -- a big, white van with an elevator in the back.  Sometimes, he's so excited to go to school that he rocks back and forth in his wheelchair barking excitedly.  Other days, he slumps, sullen, head to the side, gazing at nothing.  Sometimes he is distressed, and roars so loud that it could wake half the neighborhood.  Elsie loves to see J. 

"Look, J has wheels just like you!"  His mother beams on a stroller day.  She can tell that Elsie loves this, and welcomes her interest.  I smile back with gratitude.  I worry that Elsie's fascination -- the unabashed staring of a child, the gleeful joining-in on the happy barking -- might feel hurtful.  It is dangerous territory.  But to hurry her away, to interrupt this interaction, to tell her "No! Don't make noises like J!" would teach her the wrong lesson, that there is something Wrong with J.  Not just something sick with him (as is clearly the case), but something deeply WRONG.  That his family is embarrassing.  That we should enforce isolation on neighbors because of their differences.  That shame is an appropriate response to those with disability.  So I stand back and let her interact naturally, and I deeply appreciate J's mom's openness to this.  She laughs, and the little lines at the corners of her eyes tell me that we're okay.

If the van comes, we stop and watch the elevator, see how it loads a full grown young man and his enormous, chunky wheelchair into a vehicle.  We watch the man tighten the straps, then climb in and drive away.  Elsie waves.  J's mom chuckles.  We carry on to school.  "See you tomorrow!"

And we do see them tomorrow.  We see them every day.  Most days, this is my biggest trigger. 

Many infant loss moms struggle around babies who were born when their babies were due or stillborns delivered.  I might, for example, be disturbed by babies who are about 16 months old.  But I'm not.  16-month-old healthy babies don't hurt me because I have fully integrated that Laurel was never going to be that healthy, happy, glowing, talking, tottling 16-month old.  That isn't who she was.  She never would have gotten there.  I have cleaved my imagined Laurel from the world of healthy children. 

Disabled children and adults are another story.  I see J, and I wonder, "Would Laurel have been like that? Would our lives have been like the lives of this family?"  I want to know everything about J.  I want to know how old he is.  Where he goes to day program.  Does his family have to pay out of pocket?  Why is he the way he is?  What are his abilities, and where are those limits?  How have his parents managed to stay married this whole time?  What was life like for his siblings?  I want to sit down and grill his mom.  I want to spill my heart out to her about my own disabled daughter, about choosing peace over life.  I want to know what she thinks about that.  Did she get a choice?

Every day, I walk off with Elsie, all the questions and discomfort seething in me.  I do not ask them.  Instead, I round the corner and talk to Elsie.

"You know, Elsie, the reason that J makes those noises is that he can not speak.  Some people don't have any words.  J doesn't have any words, so he finds different ways to express himself.  Your sister, Laurel, wouldn't have had any words, either.  How did J sound to you today?  What do you think he was saying?"  Elsie and I agree that he sounded excited, and that must love school.  "Just like you!  You love school, too."  I say, and leave it at that.

***

Yesterday, Elsie and I came home late from school.  J's mom and dad were sitting in their garage, waiting for the van drop-off.

"She loves J!  Loves his wheelchair and the elevator."  J's mom remarks to her husband.  He smiles.

"Where does J go?" I ask.  The safest of my million questions.  "Is he still in school?"

And they tell me.  And tell me.  And tell me.  They answer a vast number of my unspoken questions.  They tell me about J being born healthy, but suffering his first seizure at 3 months.  They tell me about the neurologist.  About the meds.  About the injections.  About the adult diapers.  They tell me about his program.  They give me a gift, a glimpse into their life.  A peek into what would have been if Laurel had been born live and lived three decades (an impossibility with her condition, but still.)  Their love for their son is clear and true and goes without saying, just like my love for Laurel.  They are so down-to-earth.  A breath of fresh air.

***

That night, I go to curriculum night at school, and I listen to the party line about "special rights" and inclusion curriculum from thoughtful, well-intended child development specialists -- all of which makes me feel very much outside.  I thank J's parents for what they gave me a few hours earlier.  I still really struggle with this special rights / special needs discussion.  But I don't think I'm going to struggle with walking past J's house in the mornings any more.