Imagine living on high alert, every second of every day. That’s life with severe, uncontrolled epilepsy. You’re always watching, always listening, always bracing for the next seizure. And when they happen multiple times a day, there’s no break. No way to ever fully relax.

In Ep 183 of The Rare Life, Hailey Atkison shares the raw reality of parenting a child with severe, refractory epilepsy. She talks about the emotional toll of watching her daughter, Juniper, seize multiple times a day, the way it impacts her entire family—including her sons—and the impossible task of balancing hope with the knowledge that nothing they’ve tried has truly worked.

She also dives into the impossible choices—when to push for new treatments, when to let go, and how she’s learning to focus on the good moments in between. Because when epilepsy takes so much, holding onto joy becomes an act of defiance.

And a huge thank you to our sponsor, MOOG Medical, for making this episode possible!

Links:

If your child uses an Infinity pump, you can call the Moog Medical 24/7 Clinical  Helpline for any assistance you need at 1-800-970-2337 or moogmedical.com/contact.

Listen to Hailey’s previous episodes: 174 on silencing parents and 117 on traumaversaries.

Listen to Hailey’s husband Derek on 146: The Dad episode.

Get Hailey’s book, What is Epilepsy?

Fill out our contact form to join upcoming discussion groups!

Follow Hailey at @growing_juniper!

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Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

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