Anyone who’s lived with narcolepsy knows how tough it can be to find other people who can relate to what they’re going through. The folks at the Narcolepsy Network know this too.
The Network’s annual conference goes a long way to help its members meet up and have meaningful conversations. Of course, not everyone can attend these conferences, so the Narcolepsy Network is offering the next best thing: Narcolepsy Roundtables. Narcolepsy Roundtables let readers listen in on conversations between Network members on topics that matter to the narcolepsy community.
One of these topics is how parents living with narcolepsy juggle taking care of their health while raising their children. The three moms featured in the roundtable—Cat Thoma, Aja Marks, and Chalanda Samec—have children ranging in age from two to 12; two of the moms had their children before they were diagnosed, so it was easy to attribute their symptoms of sleepiness to the rigors of parenting.
While the women’s backgrounds and experiences were very different, all could agree on a few key things.
As a parent with narcolepsy, you have to open yourself up to any help you can get, and you can’t be shy about asking for help either. You also have to accept that you may not be able to do things exactly the same way everyone else does. For example, if you need to take a medicine that requires getting eight hours of sleep a night and knocks you out cold, you need to stick to a strict schedule. You’ve heard the old parenting advice, sleep when the baby sleeps? Truer words were never spoken for parents with narcolepsy!
At the same time, you have to be flexible and “roll with the punches.” You can try to add predictability to your routine, but all parents know predictability can be elusive, especially with young children. In that sense, at least, parenting with narcolepsy has a lot in common with parenting without narcolepsy.
The group had a lot more to say about parenting with narcolepsy, including the pros and cons of staying on treatment while pregnant and how to wake up when there’s an absolute emergency. At the end of the day, though, all three women agreed that any challenges they faced from their narcolepsy paled in comparison to the joy of being a mother.