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 child. She was about a year and a half when my symptoms began.
What has been the most difficult part of mothering while living with a spinal CSF leak?
Leaking has made parenting so hard. I’m lucky enough to be sharing the parenting with her father, but it’s just crazy. My daughter can’t remember me not being ill. She gets frustrated sometimes that I can’t stand up. I hate that I get snappy when I’m in pain. I had a miscarriage just before I started leaking, and have been on medication since. I can’t imagine I’ll have another pregnancy, which is sad. But accepting that my daughter will do and experience less [due to my spinal CSF leak] is probably the most difficult thing.
What was the most creative way you managed to parent while ill?
Setting up art activities on a low table near where I can lie down. Timing painkillers so they work for when I need to do stuff for my daughter. Meal planning in advance, bulk shops delivered to the house, and big bulk cooking into the freezer if I’m well enough to cook.
How are things now?
Right now I’m waiting for surgery, nearly four years after I started leaking.
What do you want other moms to know?
What’s got me through is not focusing on the big picture, but accepting slowing down and being in the moment. Meditation has helped with that too. And the Inspire forum for solidarity!
Further Reading:
See our “Tough Mother” profiles from 2021:
Tough Mothers: Becky
Tough Mothers: Michelle
Tough Mothers: Monica
Tough Mothers: Stacy
Tough Mothers: Elle