border crossings

i was away on work travel all week.

in a part of the country where there is big sky and small, but fierce mountains.

where contrasts are stark; the land hard and dusty and pock-marked with prickly cactus, the pregnant sky at once blue and vibrant, heavy and ominous, seeming to foretell of what lies just beyond the borderline in the distance.

i thought about emma constantly while i was away. about how parenting her, too, is such a study in contrasts. countless hours dedicated to encouraging her independence, curiosity, capacity, vigor. countless hours inadvertently spent sheltering her from what (and who) lies outside, beyond the walls of the cozy cocoon we have created for her.

. . .

i recently read a blog post by another mom embarking upon pregnancy - this one particularly hard-won, after years of trying without success.  now pregnant, she wrote of her recent amniocentisis and the fear she felt waiting for the results. her fear of being told that there was a flattened nasal bridge, a thickened nuchal fold, an extra chromosome, and having her dreams crushed, her hopes splintered like some cruel joke.

part of me understood all too well what lies at the heart of that fear. another part of me, though, now on the other side of the border that lies between inexperience with Down syndrome and having emma bless my world, was hurt by the language she used.

i pondered how she could speak about a child - like my child - with such horror, such dread. beyond no longer understanding such a dehumanization of individuals with Down syndrome, i also no longer have a tolerance for it.

emma is many things (gorgeous, precocious, inquisitive, capable) but she is not a mere compilation of physical traits. she is not only an extra chromosome. not a simpleton. not an always-happy court jester. not a one-note wonder.

she is as complex and interesting and engaging as any child.

as all children.
. . .

on the other side of the once-seemingly impassable divide between my own ignorance and today, i am coming to understand that emma is not really the one with special needs.

she is special, for sure.

she has needs, no doubt.

but, emma can learn and do and be. i am realizing that the challenge is for me, for us, to learn how to teach her in a way she can understand. to accept her in a way that honors her humanity. to embrace her as we should and would any other child.

if i, if we, fail to meet that challenge, we are the ones who are delayed. not her.