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?
Two. They are five and seven now.
How old were they when you first started experiencing symptoms?
My spinal leak was nine years ago, prior to having children; however, I had severe rebound high pressure whilst pregnant with both of them. I ended up getting a shunt when my second baby was three months old. Although I haven’t had a CSF leak since then I have had several failed, over-draining shunts (which feel like leaking).
What has been the most difficult part of mothering while leaking?
Feeling like you’re not good enough. You want to be the best mother you can be, and I remember crying for days when I had to give up breastfeeding so I could take medication to help with intracranial hypertension. My doctor said, “A happy baby needs a healthy and happy Mommy.” I just did the best I could. I look back and do wonder how I managed it, but I know I loved in my children as much as I could and devoted my best time to them.
What was the most creative way you managed to parent while being ill?
I would lie on a blanket outside while they would play so we weren’t stuck inside all the time. One of their favorite things to do was to watch a movie in our bed, so that made it a positive thing. We would play a lot of board/card games with me lying on the couch next to them. Once, when I had to go for a four-hour MRI one evening, I set their sleeping bags up and got their favorite snacks, some cute lights, and movie so they wouldn’t be thinking about the fact I wasn’t at home. They had the best time and still talk about it!!
How are things now?
I’m currently on my 14th shunt. It’s been a hard time, and my kids know that sometimes mommy has to go to the hospital. I always try to make sure they know that I have faith in my doctors to help ease any anxiety about it. We are blessed to have video chat readily available so I can always talk to them before bed or if they want to speak while I’m in the hospital.
What do you want other moms to know?
The love and compassion my kids have for each other, and other people is amazing. I really do think having a parent who is sick makes them more empathetic humans. I just try to do my best and try not to be too hard on myself. I lie down when they are at school so I can do more with them when they are at home. We will go to the park for an hour but then watch a movie while I lie on the couch and they are oblivious to why. Being a parent has been very hard but the biggest blessing of my life, even with health issues.