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 two children; the oldest is five and my youngest is one.
How old were they when you first started experiencing symptoms?
My symptoms started right after the birth of my son a year ago. We believe my spinal CSF leak was caused by my labor epidural.
What has been the most difficult part of mothering while living with a spinal CSF leak?
The most difficult part of being a parent while living with a spinal CSF leak is having to lower your expectations of the type of mother you want to be. You must learn to appreciate the small moments with your children and not feel guilty asking for help. It’s important to remain hopeful that this suffering won’t last forever!
What was the most creative way you managed to parent while ill?
I have had to do a lot of activities while laying down. The most creative has been coloring and doing learning workbooks while laying down on the floor. Another favorite activity of my daughter’s is letting her do my makeup and hair while I am laying down “at the spa!”
How are things now?
Things are a little better now. I am still waiting for my next treatment but have more “good” days than I used to after my first treatment. I consider myself functional, as I am able to be upright for most of the day at this time, though with many uncomfortable symptoms.
What do you want other moms to know?
I want other moms to remain hopeful! Keep fighting for your health and never give up. You are stronger than you think!
Further Reading:
See our “Tough Mothers” profiles from 2021:
Tough Mothers: Becky
Tough Mothers: Michelle
Tough Mothers: Monica
Tough Mothers: Stacy
Tough Mothers: Elle