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 two children, both girls.
How old were they when you first started experiencing symptoms?
When my symptoms began my children were three years old and newborn.
What has been the most difficult part of mothering while living with a spinal CSF leak?
My children were so young when I was going through the year-long diagnosis process before any treatment. I didn’t understand or know how to manage all of the various symptoms that I was experiencing. It made me feel sad when I was laying flat, parenting from bed. There were times when my arms were so weak I could not pick up my children or buckle their carseats, so I couldn’t take them anywhere. I felt so helpless and hopeless. I was unable to stand for more than a few minutes at a time and everything took so much longer to do. I felt like I was always playing “beat the clock” to do as much as I could for my kids before I had to lay flat again due to the debilitating pain.
What was the most creative way you managed to parent while ill?
I learned to ride the wave. When I felt good, I did what needed to be done, and when I felt bad I laid flat in bed. That’s all I could do. I took shortcuts, like 3-in-1 shampoo with a pump dispenser to wash my girls’ hair, because it was faster. During my recovery from epidural blood patches, my girls learned to climb in and out of carseats so I didn’t have to lift. They also learned to slide laundry baskets to the laundry room, and I had all of my heavy items delivered.
How are things now?
My girls are now 3 and 5 and more independent. They enjoy being helpers and they have become accustomed to our routine. I don’t carry my kids like other moms; they are too heavy for me. I can’t run and chase them, and I know there are many activities that I will never be able to do with them. But they understand to protect my back and not to jump or climb on me. I am better able to manage my day-to-day symptoms, and my quality of life has improved as my family and I learn to understand my limitations and capabilities.
What do you want other moms to know?
It helped me to read about other people’s experiences. There is hope. When I feel really bad, I remind myself that the pain will subside and I will feel better later—and I usually do. Try to seek out ways to manage chronic pain: deep breathing, prayer, support groups, a good pillow, etc! I like to read about what others in our community have tried. This condition is so isolating. Family and friends may not always understand or be able to provide support. But learning what has helped others can provide help and hope for you in your experience.
Further Reading:
See our “Tough Mothers” profiles from 2021:
Tough Mothers: Becky
Tough Mothers: Michelle
Tough Mothers: Monica
Tough Mothers: Stacy
Tough Mothers: Elle