Sean is poetry to me. He is limited in how he can express himself, and yet when he does, sometimes it is the most lovely observation. My favorite is on a rainy fall day when he started sniffing the air, a trained bloodhound it seemed and said simply,
"The clouds smell good. Can you smell the clouds, Mommy?"
On a warm day in June on our way to school he stopped with sudden purpose and said simply, "Smell the sun."
It was the scent of cold damp earth and wet evergreens - it was simply the smell of clouds. I would have never thought that clouds would have a particular scent, but after he said this, I was completely tickled. He also loves the smell of sunshine.
I took a deep inhale and smelled the ripe strawberries in the patch, the bloom of rhododendrons and azaleas, and the musky leaves of the Japanese maple. Where would these all be without the sun's warm caress? This was not lost on Sean.
When Sean dances and spins and hops there is rhythm to his movement, there is poetry echoing in his ears. His smile is large and eyes bright, the look of an old soul surfaces and I wonder if he is much more a part of this world then I and/or others give him credit for.
The first poem I wrote about Sean is one of my favorites. Mostly it is a favorite because it is a reminder of how far he has come. I wrote it in third person because I needed to find safety in distance -- we were new to the diagnosis and unfamiliar with what it would mean to us as a family. At the time, it was too hard to write in first person -- I needed to buffer myself from the sharpness. I sat outside of myself and looked in and this is what I saw and this is what I wished for.
a flightless bird
in a nest of wooden train tracks.
He stops for a moment --
Small fingers curl around a tank engine.
He pulls away from her like
a cheap iron-on
or the peel of an apple
into the sink,
to the drain.
She wishes on
other children’s’ birthday candles,
pollen that she catches
like a whisper
in her fingers
that he will wake with words
wet on his lips
like shiny drops of rain
spilling from his tongue.
She will ask,
"Where have you been, my boy?"