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?
I have one four kids. They were about 18, 15, 11, and 8 when my symptoms began.
What has been the most difficult part of mothering while living with a spinal CSF leak?
Helping kids with special needs that thrive on consistency and routine understand limitations and a new “normal.”
What was the most creative way you managed to parent while ill?
I downloaded a library app to borrow books on my phone during the pandemic. I continued to read to my kids while laying down and snuggling either of our four-foot reptiles (Frankie, in particular, made my life as a leaker so much less depressing and lonely).
How are things now?
After the first few months, I slowly gained the ability to be upright for longer throughout the day. I still have to lay down for periods during the day but my kids are able to have a mom that can now at least make it through a presentation at school.
What do you want other moms to know?
The greatest thing my mom ever taught me. “When there is a will, there is a way.” There are a million ways to be creative and inspiring laying down. No matter how disheartening life with a leak can be, you’ll never forget the snuggle moments you had when you weren’t able to get up and cook dinner.
Further Reading:
See our “Tough Mother” profiles from 2022:
Ketura spoke about the importance of appreciating small moments.
Kellye spoke about the importance of letting things go.
Lindsay spoke about learning to “ride the wave.”
Sanela spoke about letting your kids help you in their own way.