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?
One. She was five years old when my symptoms began.
What has been the most difficult part of mothering while living with a spinal CSF leak?
With my husband working five days a week, weekends and school holidays have been extremely tricky to keep my daughter Jess occupied.
What was the most creative way you managed to parent while ill?
I was unable to sit up for very long so Jess painted my nails and also put moisturizer on my face to make me feel better.
How are things now?
Recovery has been slow after my CSF-venous fistula was patched. I now have intracranial hypertension (too much CSF fluid instead of too little). Thankfully I have an amazing doctor monitoring my progress and can stand up/sit up for short periods, with daily improvements now being seen.
What do you want other moms to know?
You are not alone in this, and that it’s okay to accept—and ask for—help.
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.