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 2 wonderful children, 15-year-old Mathias and 12-year-old Athaya.
How did your leak affect them?
I first started experiencing symptoms long before I had children, and my leak was at its worst when the kids were younger. To be honest, it was hard: they couldn’t understand why I was so unable to do fun or even simple things, or why some days I felt great and I could go to the park, but other days I couldn’t lift my head. My daughter was very caring and helpful, and my son was sometimes frustrated that I couldn’t do regular things. As he got older, he understood what I was going through and that I was doing the best that I was capable of. I feel my leak has made them very empathetic individuals.
What was the most difficult part of mothering while leaking?
I’d say it was helping with my children’s homework. When my symptoms were bad, I couldn’t focus. The pain was so bad, I couldn’t even remember simple things. Second-grade math was a challenge some days! I was so embarrassed. Also I love cooking for my family, and there were a lot of days where Dad had to come home and cook or we had to order out. I hated that. I felt so guilty.
What was the most creative way you managed to parent while being ill?
Living room picnics on the floor! We did homework by putting blankets and pillows on the floor, getting comfy, and having snacks and reading stories.
How are things now?
Worlds apart! I have been sealed for about 6 years now, and my intracranial pressure is regulating itself without medication, finally. I have almost no lasting symptoms or side effects. I got married, I went on my first plane ride (to Hawaii), and I drive myself everywhere now—something I wasn’t able to do before. There are so many things that I didn’t get to experience since I grew up with a leak. I’m making up for lost time now!
What do you want other moms to know?
Despite what you might think, you are needed, you are loved, you can contribute, and I love you. I know it gets hard, but we will make it through. If ever you need someone to talk to, find me on Facebook, I’ll be there for you. A good support system is a must!