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 18 months old when I first started experiencing spinal CSF leak symptoms. (My leaks were spontaneous, fistulas specifically, and began while I was assembling a play kitchen for her for Christmas in December 2020).
What has been the most difficult part of mothering while living with a spinal CSF leak?
Having to tell her that Mommy can’t play with her, or give her a bath, or take her places, or go somewhere with her. I’ve never once been to a playground with her. She started dancing last fall and my dream was to have a little girl who danced. I attended a few classes with her a few months ago, but have been unable to since. It’s very hard for children to understand at such a young age. She doesn’t remember me as anything but flat on my back in bed.
What was the most creative way you managed to parent while ill?
I got a set of pet stairs so my daughter could climb up into the bed without me having to lift her (in addition to helping out our geriatric felines)! We have certain games that she just plays with me in bed. She loves to cuddle now that she’s older. As for general caregiving, her grandparents rotate through being here with her to take care of her.
How are things now?
I am just recently sealed as of a month ago after leaking for 2 years and 3.5 months. My daughter, who is now almost four, will tell anyone who will listen that, “Mommy is sloooowwwwwly getting better!”
What do you want other moms to know?
Get help from family, friends, neighbors, anybody you can. They always say it takes a village to raise a child, even more so when a parent is ill. There is no shame in asking 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.