Tag: travel

Epilepsy, parenting, PCDH19, Travel

The Things That Scare Me

At some point in the demo, he asked me about the fear of parenting a child you could lose at any moment.  I told him that it’s always there, and then, without thinking, I said “that’s why we travel.”  When the stress and emotions get to be too much, my husband and I load our kids up in the truck and haul our 5th wheel somewhere.  I think it is something of a carpe diem thing for us.  We embrace the days we have because we don’t know how many more there will be.

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Epilepsy, PCDH19, Special Needs

On Finding My Tribe

As we sat around the fire pit in the hotel courtyard and talked for hours, I suddenly felt my soul exhale. Every woman in that circle knew what it was like to hold your seizing daughter in your arms and pray she takes another breath. Every woman understood that strange mixture of devastation and relief that comes with a diagnosis. Every woman bears the scars of dreams that were ripped from her chest. Each of them understood the pressure of carrying this burden but somehow as we all shared our stories and shared the weight, it seemed to get a little lighter.

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