A hike from the heart- PCDH19 Life


This summer, my husband and I took our kids on a road trip through Utah and Colorado. We drove through land that was rugged and harsh. We hiked in canyons, across giant rocks and up mountains. I thought a lot about those mountains.

Parenting a child with PCDH19 Epilepsy sometimes feels like climbing mountains. When the seizures hit and they don’t let up, it feels like trudging up a steep path where the trees are so thick you can’t even see the peak. You start to worry that you’ll just climb forever. Every decision, whether about medications or the next spot to place your foot, is terrifying because a misstep could send you tumbling down the slope. The air gets so thin you are sure you’re about to suffocate. Your entire body is so exhausted you don’t think you can go on but quitting isn’t an option for us. You get up every morning and give meds and talk to doctors and keep climbing because there simply isn’t another choice.

Eventually, you reach the peak and the seizures finally slow or pause. You hold your breath and cross your fingers hoping they won’t return or will at least give your child, and family, a break. The relief that the climb might be over fills your entire body but at this point you are probably so battle weary that it’s hard to enjoy the view before you start your decent.

Parenting a child with PCDH19 Epilepsy is like hiking through a never-ending mountain range. We have high highs and low lows, total exhaustion, and moments of terror. We also see so much beauty on the journey. There are moments when humanity surprises you and people walk with you during the hardest places. A random stranger shows you grace when you need it most and it’s like a cool sip of water. You see your child, who has endured more than she ever should have had to face, smile and dance despite everything.

When I talk to other moms and dads who are parenting a child with PCDH19 Epilepsy, I hear them talk about the mountains too. They cry in hospitals, rejoice in achievements, and struggle with the journey. Sometimes, they say the exhaustion is too much and they don’t know how to keep going. They get up every morning though and put one foot in front of the other because there really isn’t another option. In those moments, I think it’s helpful to look back on the mountains. When I remember what we have overcome already, I know I can take on the current climb too. I think back to past times when every breath was a challenge but we survived so I know we can keep breathing through this one too.

If you feel like you’re in the mountains today, know that you aren’t alone. There are other families on this journey. We know the joy, the pain, and the weariness. We are here with you. So, look back on where you have been to remind yourself that you can climb your current mountain too. Then, take a deep breath and one more step.

Le is a counselor, a professor, a wife, and a mom to three kiddos. Her daughter, Alyssa, is 8 years old and was diagnosed with PCDH19 Epilepsy in 2013. She shares her journey on Mom* and would love to connect with you on Facebook or Instagram

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The PCDH19 Alliance is a registered non-profit by the Internal Revenue Service under Section 501 (c)(3). We are 100% volunteer run. All the funds we raise go directly to funding research, supporting families, raising awareness, and finding a cure.

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