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, who is now five years old.
How did your leak affect her?
My leak affected my ability to play with my daughter, whether it be playing soccer or even sitting to play dollies with her. Even healing from the surgery to repair my leak affected my ability to care for my daughter. My boyfriend took on all roles, including being my nurse.
What was the most difficult part of mothering while leaking?
The most difficult part of mothering while leaking was feeling inadequate. My daughter said she didn’t want a “broken mommy anymore.” Invisible illnesses are hard for a lot of people to fully understand, and especially a child.
What was the most creative way you managed to parent while being ill?
We would do her Kindergarten homework from the couch or my bed during my recovery.
How are things now?
Life is getting back to normal. I am nearly two months post-operative. I took her to school for the first time last week and kicked the ball with her for the first time this year yesterday. Seeing her light up when I offer to play dollies or help her put makeup on has been one of the best parts of recovery.
What do you want other moms to know?
Have grace with yourself. I am still reminding myself of this. We can’t give our best care to others if we are first not taken care of. Dura mater means “tough mother,” and if our duras aren’t perfect, we shouldn’t expect perfection from ourselves, either.
