Living with a spinal CSF leak is difficult. And when you’re a caretaker of others, it can be even more of a challenge. Add to that the cultural expectations that exist around motherhood, and many mothers living with leaks find themselves stretched as thin as dura mater in their attempts to handle it all. Dura mater means “tough mother,” but we know from our experience with spinal CSF leak that even this hardy membrane can have its vulnerable spots—and that trying to power through and ignore our symptoms can often make us feel worse. All week this week, we are sharing stories from mothers in our community about what it’s like to mother while leaking. Their experiences of grappling with uncertainty, grief, and resiliency as they navigate illness and parenthood illuminate how learning to be vulnerable, flexible, and creative honors the “tough mother” in all of us.
How many children do you have, and how old were they when you first started experiencing symptoms?
I have three children. They were 6, 10, and 13 when my symptoms started.
What has been the most difficult part of mothering while living with a spinal CSF leak?
Missing out on being fully present with them to enjoy them. Kids are little for only so long, and I feel like I was robbed of time.
What was the most creative way you managed to parent while ill?
Engaging with them while laying flat. Turning things like bedtime and getting ready for the day into games that empowered them to get ready and remember what they needed for their day.
How are things now?
Amazing! I am very fortunate that I’m no longer leaking.
What do you want other moms to know?
It’s okay for your kids to see how difficult living with a spinal CSF leak leak is and how much you’re struggling. It helps them develop compassion and it does not make you any less of a parent. I think the gift of a leak is that you learn to let go of a lot of stuff you felt like you had to be responsible for. You find out very quickly that the world doesn’t collapse because the laundry doesn’t get done. Kids are way more resilient than we give them credit for. They are also very capable of so many things that we just assume they can’t do.
Further Reading:
See our “Tough Mothers” profiles from 2021:
Tough Mothers: Becky
Tough Mothers: Michelle
Tough Mothers: Monica
Tough Mothers: Stacy
Tough Mothers: Elle