Tag: PCDH19

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.

continue reading

Counseling, Epilepsy, parenting, PCDH19, Special Needs

7 tips for parenting special needs siblings

I am writing this post from the Starbucks in our children’s hospital. For once, I’m not here with Alyssa. She is spending this rainy, Saturday afternoon at a family birthday party while I’m in the city with one of her brothers.  He is here to spend a few hours with kids like him, boys and girls who have siblings with…

continue reading

Counseling, Epilepsy, PCDH19

Sick Days for the Soul

Most people still don’t understand that epilepsy can be fatal and is actually a leading cause of death. Families like mine are very aware of the statistics. We know that we could lose our children while they sleep and that every seizure could be their last. Madeleine’s death was still a devastating shock though. She was a vibrant 16-year-old with her life ahead of her and a family that adored her.

continue reading

Epilepsy, PCDH19, Special Needs

In the shadow of the valley of SUDEP

Four times this month, the monster has won. Four times. Four mothers have been forced to bury their small children. Four kids are gone because of a disorder that most of the world still sees as non-life threatening in spite of the 50,000 people in the US who die seizure related deaths every year.

I was sitting on the couch a few days ago reading Facebook when another post stole my breath. A sweet girl was curled up in her daddy’s arms watching TV and then she was gone. No warning. No preparation. No goodbyes. Just gone. I looked down at my own little girl with her head on my shoulder and I felt my heart stop because as much as I try to pretend we’re OK, I know that monster lives in my house too.

continue reading

Advocacy, parenting

You can’t handle the truth. That’s a problem.

When I see a grieving mother being viciously attacked by strangers after she watched her toddler be stolen by a wild animal, I know that it is not safe to write about my own, lesser struggles. When I see a woman who loses her child in a crowd for a moment, and then almost loses him forever to a gorilla, be held up as an unfit mother undeserving of parenthood, I am afraid that I’ll be destroyed for my own shortcomings. When I read that a mother is told she should have aborted her children and deserves to die because she publishes a rant on sunscreen, I worry that sharing my truth will open my family up to similar terror.

continue reading

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.

continue reading