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?
Three. My oldest daughter was 22 months old when I got my spinal CSF leak due to an epidural during the birth of my youngest daughter. We adopted our son 10 years later when he was 5 years old.
What has been the most difficult part of mothering while living with a spinal CSF leak?
It took 18 years of suffering with leak symptoms before I had a diagnosis of spinal CSF leak. Within hours of having epidural anesthesia during the birth of my younger daughter, my symptoms began, and although I tried to advocate for myself, I was told I was imagining my pain and placed on anti-psychotic drugs for almost a year instead. Several years later, I was diagnosed with dystonia, and my doctor agreed that I was NOT imagining my pain and took me off the anti-psychotic drugs. Still, my continuing spinal CSF Leak symptoms were blamed on the dystonia, and so I continued to live a painful and disabled life.
Out of desperation, in 2020 my doctor finally decided to try a blood patch. Within minutes, my symptoms started to diminish. Within two weeks, the dystonia was gone. I was examined by my neurologist and he declared the dystonia secondary to a spinal CSF leak. The reprieve from my symptoms lasted for five weeks, when I lifted something heavy and all my spinal CSF leak symptoms came back. I had another blood patch, and this time followed careful instructions about avoiding lifting, bending, or twisting. It has been over a year and half since then, and my last blood patch is still holding. I do still have a genetic Ehlers-Danlos connective tissue disorder, but my extreme daily pain is gone.
The most difficult part in parenting during these years has been doubting myself and not understanding WHY I was feeling the way I was. Since I didn’t understand that I was leaking cerebrospinal fluid, I couldn’t see any pattern to my symptoms. They were not always orthostatic. I SO wanted to be a dependable mother, but my children had to learn to be flexible with me.
What was the most creative way you managed to parent while ill?
In attempts to help my kids learn that I had limited amounts of energy that changed from one day to the next, I took advantage of their early understanding that coins had certain denominations and how those equaled a dollar. I told them I would start each day with a dollar and slowly lose my “energy” coins until I was out. This became a great quick way to communicate with them. “Mom, do you have enough quarters to play this game with me?”, “Mom do you have enough quarters to drive me to the mall?”, “Kids, I had a rough night and I’m only starting this day with 35 cents to my name, so I’m going to need your help today”, “Mom needs to go take a nap to get another quarter”, etc.
How are things now?
I know I may need additional blood patches in the future, because life happens and I may leak again. But, now that I know what is going on, my quality of life has greatly increased. I feel fortunate to now be a voice for those who need one. I’m in the process of writing a book about my life as a Tough Mother to advocate for spinal CSF Leak awareness AND proper post– blood patch protocols.
What do you want other moms to know?
Being a perfect mom is a myth! Humble yourself and keep asking for help. Our health journey may be meant to grow and mature us, but it can also be a growing journey for our family and friends to help us. We can shame ourselves thinking our children are lacking because of our circumstances. However, our circumstances could also be about growing our kids into the person they are meant to be.
During my years of pain, art therapy became a saving grace and something I could do with my kids. Now, one of my daughters is going to college to be an art teacher. My other daughter wants to study the brain and is going to grad school to be a neuroscience researcher. My son is now in high school and he mentors middle school boys with compassion for their needs. (And although he joined our family through adoption, he was diagnosed with the very same same connective tissue disorder that I have, and my biological daughters have. It was God’s providence to send him to an EDS family.)
All three of my kids are living out their callings, all influenced by my chronic health issues. And all of them have a depth of compassion to help others beyond what is typical for their age. My journey is their journey, too!
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.