Hope is one of the most powerful, uplifting feelings. But it can also set you up for the possibility of crushing defeat.

 She may be a child on the autism spectrum, but will the label change who she is?

That’s what I want for my son—a world populated by curious people willing to engage with him in his world.

It is two days after the Women’s March and I am scrolling my Facebook feed, trying anything to distract from the fact that my youngest child is behind a set of doors, anesthetized, while technicians shoot images of his brain.  

When our elected officials threaten to upend Medicaid, they are threatening my son’s life. Full stop.

And then our child is born autistic, and here in front of us is that level of aloneness we have worked our whole lives not to feel. And to love them as deeply as we do, we have to accept our total separation.

This limitless love and well-honed intention could not have prepared us for a disaster as profound as chronic illness.

In our family, being the eldest brother doesn’t always mean meeting your milestones first and sometimes a younger sibling has to step up.

I wanted what I’ve never wanted—to be told, moment by moment, what to do next. I wanted the pressure of knowing what’s best to be anyone’s pressure but mine.

I felt like Valerie and I were all alone, stranded with our precious flower, unsure of how best to help our son but determined to protect him no matter what.