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, and how old were they when you first started experiencing symptoms?
I have three children. My kids were 18 (daughter Avery), 16 (daughter Rhynn), and 14 (son Gray) when my leak began.
How did your leak affect them?
My leak impacted my kids in so many ways. Not only was I no longer able to do so many things, it was frightening for them to see their usually incredibly active mother suddenly incapacitated. Even worse, not having an explanation for my pain was stressful for my kids. It was hard for them to see me in pain, and they were worried about me. On top of that, there were more tasks for them to do around the house to fill the gap, so everyone was stressed.
What was the most difficult part of mothering while leaking?
The most difficult part of mothering while leaking was missing important milestones in my children’s lives. I missed academic and athletic events, a confirmation ceremony, and many others. Even when I managed to attend events, I was distracted and stressed by the pain and unable to be fully mentally present.
What was the most creative way you managed to parent while being ill?
Mothering with a spinal CSF leak is a creative endeavor, indeed! An obsessive list-maker under normal circumstances, with my leak I digitized everything: our calendar, tasks, and chore lists. Grocery and Target shopping lists were shared electronically with my husband and kids so that anyone who stopped at the store would know exactly what was needed. I became an expert at “remote cooking” (i.e. giving cooking instructions from the couch while one of my kids handled things in the kitchen).
How are things now?
I am lucky to be fully recovered and functional now, three years after my surgery to repair a ventral leak at T10-11, which was likely caused by a chiropractic adjustment. I had a strange recurrence of symptoms about 6 months ago that eventually resolved without intervention, but it keeps me guessing as to whether my spinal CSF leak chapter is completely closed or not.
What do you want other moms to know?
Other moms struggling with spinal CSF leak should know that you can still parent with a spinal CSF leak; you can still be every bit a mother to your kids, even if you are bedridden. Most of all, kids need love, attention, and connection, and you can provide all of those things whether you are vertical, horizontal, or upside down! I was lucky that my kids were older when my leak occurred, and I can sympathize with the difficulty of mothering little ones while suffering. The resilience and strength that my kids learned by watching me battle through this illness, and by having to step in to fill the gaps created by my incapacity, are huge assets that they will carry into adulthood. They learned compassion, responsibility, and the importance of advocating for yourself (especially in a medical context) by living through this experience with me. I want other moms dealing with spinal CSF leak to know that your kids will be more than OK; in fact, they might be stronger, more compassionate human beings because of the experience.
