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 three children.
How old were they when you first started experiencing symptoms?
When my symptoms began, my children were 2 years, 6 years, and 9 years.
What has been the most difficult part of mothering while living with a spinal CSF leak?
Not being able to be active and have bonding experiences with my three boys through things like playing basketball, skiing, or throwing the football. Not being able to be the role model I wanted to be for my children because I was not able to participate in any hobbies I loved or pursue my career.
What was the most creative way you managed to parent while ill?
I would hold “snuggle time” in my bed with each of my children when they got home from school or activities because I would need to lay down immediately. I had quality one-on-one time with each of them to talk about how their day had been and what they were looking forward to that week. I realized that this was a bonus to having a leak, because before my leak we rarely slowed down like that or took breaks during the day. They really opened up. It was a chance to bond with them when I felt like I had lost so many other bonds with them.
How are things now?
I am able to function again and be the mother I want to be. I am able to be much more active with my children now, but still have to hold back on some activities with them, such as rollercoasters, running, or skiing moguls. I still long for the days when I could be as active as I wanted with them, but being able to simply get in the car and go see their sports games without pain is a blessing.
What do you want other moms to know?
That it will get better. You may feel as though you are missing so much of motherhood and are not able to be the mom you want to be, but there are small silver linings to this challenging time in your life. My children have a better appreciation for the importance of perseverance in times of struggle now. They also have witnessed the struggles of an invisible illness and are empathetic to people who may be struggling in a way that is not obvious to others. Another silver lining is that my youngest is actually my most independent and organized. I attribute this to him having to fend for himself at times when I was bedridden and he was two years old!
Further Reading:
See our “Tough Mother” profiles from 2021:
Tough Mothers: Becky
Tough Mothers: Michelle
Tough Mothers: Monica
Tough Mothers: Stacy
Tough Mothers: Elle