I am so sorry to hear your news.
I wanted to send my condolences.
I can’t imagine what you must be going through.
I have experienced much loss in my life, but these words were not spoken during shiva or after a funeral. I heard all of these statements, repeatedly, within the first six months of my daughter’s diagnosis. Each one, gently etched into the top of a greeting card or whispered on my voicemail, had the most admirable purpose – to send me comfort during a difficult time. It was always met with an uncomfortable graciousness, but really what else was there to say.
Today I taught the TED talk “The Danger of A Single Story” by Chimamanda Ngozi Adichie to my high school freshman. They learned the harm caused by solely focusing on a single portion of a story. They were touched by the anecdotes. They questioned if they had perpetuated this idea in their own lives.
During the third viewing of this dynamic speech, my focus shifted from their comprehension to my own.
“All of these stories make me who I am. But to insist on only these negative stories is to flatten my experience…” – Chimamanda Ngozi Adichie
And I thought back to my terror the night of my daughter’s diagnosis.
And I thought back to my very loving messages.
All of us had a single story of what it was like to raise a child with special needs.
There was something that needed to be mourned.
A single story of people who burden their families. Who tax the resources of the health care system. People with a sickness that cannot be cured. Their differences somehow make them less and therefore are worthy of alienation. They exist only to teach others around them to be grateful for what they have.
A story acquired from a history of separation. From constructing a barrier.
But now the lens is widening.
We amplify laughter rather than collect tears. Smile with JJ DiMeo rather than mourn Lennie Smalls. Replace staring with introductions. We greet Julia from Sesame Street into our homes, and not just Tiny Tim.
And we remember the stories. All the stories.
The time she first threw a softball, even if it landed behind her. Independently walking up the stairs, although it took an hour. Getting the mail, despite the fact she had no clothes on. Trying it all, even when they said she wouldn’t.
Our special needs community has millions of stories. Many days are challenging and depleting but…
“All of these stories make me who I am. But to insist on only these negative stories is to flatten my experience…”.
Thanks Ms. Adichie. I think I learned with the students today.