to survive

I’ve recently gotten in touch with an old friend of the family. She had read Calvin’s story and reached out and told me about her own extraordinary son who has autism. She wrote:

“When he was first diagnosed at 3 years old, after he lost all of his language and stopped responding to his name, I cried every day for at least a year.”

I’ve been there, in some parallel universe, drowning in my own grief over my child’s messed up brain, his compromised health. Why him? Why me? But then again, why not me?

For three years, one day every week I’d walk across the tree-lined college campus, or drive through slush and ice to a big old pumpkin-colored house. At the top of a steep carpeted staircase I entered a cozy office and closed the door behind me. For fifty-minute sessions I sunk deep into a soft chair, my therapist’s kind face looking quietly and intently into mine.

Like all days, I surrendered to my despair as sheets of tears salted my cheeks, my voice trembling, sometimes words refusing to obey my mouth, halting all together in the tightening of my throat. Sometimes I thought I saw her leash her own motherly tears. Just by listening, and somehow understanding, she totally validated my sorrow—every day. She helped me so.

To survive I took things, not day by day like now, but hour by hour, minute by minute. Sometimes it’s all I can do, the immensity and weight of this colossal vertical precipice casting an infinite shadow over me from which I cannot escape. Everything is a reminder—Calvin’s screwed up brain but perfect body, his constant escape from my gaze, his screams, his poor balance, the mountains of medicines we must pour into his little body, his relentless seizures, his wordlessness.

But, I am not alone. I am only one of millions who have lost some part of themselves in a sea of despair over their children. But we buoy each other, we link arms and carry each other on the breeze. We understand each other.

Our children become what they will be, and in part because of us. Our children validate our sorrow and bring us immense joy all at the same time. Our children—they are extraordinary—and it is for them that we survive.

Originally published 05.09.11.

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photo by Michael Kolster

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