Down Syndrome Was a Present No Package Could Contain


Screen Shot 2014-09-22 at 6.55.19 AM I typed quickly, with a fervor and a fire that couldn’t be extinguished.

Then, with the same intensity, I deleted every blackened letter and stared blankly at the white space.

The words weren’t right.

They flowed about as fluidly as liquid through a straw with a lemon seed stuck in its interior.

I closed the computer, tucked it safely in my school bag.

It was sandwiched between data meeting agendas and notes for the next day’s professional development.

I beckoned sleep, but sleep did not beckon me.

My head held ideas tossing forward and back, as the sheets enveloped my body, mimicking the motion.

The thoughts won the unfairly-weighted battle, and I retrieved the sleeping computer.

It whirred noisily in my lap and wakened as cantankerously as a teenager on a Saturday morning.

I have wrapped Down syndrome in a package.

The edges have been folded and carefully secured with transparent tape.

A big, bright, shiny bow has been looped, swooped and pulled until a masterpiece tops the beautifully adorned parcel.

This is the way I present it, just as this is the way it was presented to me.

Most of the time, Down syndrome is gifted and received with the joy and excitement of a child on Christmas morning.

It is beautiful.

It is most worthy of pictures and “oohhs” and” ahhs.”

It warrants proclamations of exultations and declarations of appreciation to the Most Gracious Giver of Gifts.

It has opened doors and paved paths.

It has introduced new friends and greater faith.

It is a part of our life — one I wouldn’t trade for anything in the world.

But some days, I recognize the struggles Baker has and will continue to endure, and my heart aches for him.

As a baby, as a toddler, as a child, as a teenager, as an adult, in some way, shape or form, his different ability will hinder his development.

He will work longer, try harder, more persistently persevere.

Menial tasks will be more arduous.

I am his mother. His protector. His cheerleader. His advocate.

As such, I want to shield him from all of the hurts, all of the hard days, all of the unkind words, all of the sideways stares.

And when I admit that, the so carefully crafted carton begins to unravel.

The tape begins to lose its adhesion.

The bow is unfastened.

Down syndrome breaks free, and when it does, something more magnificent than even the most marvelously manicured package manifests.

It no longer conforms to the confines of a casing.

The wrapping paper has been relinquished.

There is beauty in the imperfection.

A beauty no box can contain and no décor can disguise.

The packaging has been cast aside.

It has been trampled on by our traipsing through the living room in our nightly routine of catch-me-if-you-can, and stop-me-if-you-dare.

It has been diminished in the laughter emanating from our back porch dance parties illuminated by the moon’s glow.

It has been squelched in the squeals of tickle fights.

This boy of mine, he is a present no package could contain.

This post originally appeared on Baker Is Our Dream Come True.

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