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?
Two boys, who were 10 and 4 years old when my symptoms first started.
What has been the most difficult part of mothering while living with a spinal CSF leak?
I think the most difficult part of mothering while living with a spinal CSF leak was accepting that there were some things I just couldn’t do and the disappointment in their faces when mom had to miss out. Saving my time upright and figuring out which events I could and could not attend because of pain, noise level, etc. I missed events that I can’t get back.
What was the most creative way you managed to parent while ill?
There was a lot of creativity involved with parenting during my spinal CSF leak. My boys are very active in sports so I watched a lot of baseball games flat on my back on bleachers and would spend time between tournament games lying in the front seat of the car or on a blanket. There was a lot of homework help while being flat and so many movie nights with the boys.
How are things now?
Things are really great now. I’m incredibly blessed that after 2.5 years of constant spinal CSF leak head pain, I was able to undergo a surgical procedure following many blood patches and as of this month it’s been one year headache-free! I’m a better person than I was even before my injury that led to the spinal CSF leak. I’m better physically, emotionally, and spiritually. One of the best things that has happened is my renewed relationship with Christ and being able to show my boys how God shows up even during our really hard and dark days.
What do you want other moms to know?
I just want other moms to know that you are doing such an amazing job! No matter what that looks like, it’s amazing that you are able to wake up every single day to be the mother to your children, even when it is so very far away from the picture you had in your mind. You are brave and you are so very loved! Keep going!
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.