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 were one and four years old when my leak began. They’re 17 and 20 now.
What has been the most difficult part of mothering while living with a spinal CSF leak?
Struggling to do the basics—food, laundry, bathing etc. But also grieving the loss of being the mother you want or expected to be, providing safety, consistency. Distress and worry about how this will impact my children long term.
What was the most creative way you managed to parent while ill?
Parenting from the couch and bed. Using the TV to keep my kids entertained. Cuddles on the couch. Reading Anne of Green Gables to my daughter before bed (in my bed!). My daughter would come home from primary school and straight away sit on my bed to debrief her day, sometimes for an hour. I would listen and when needed give her comfort.
How are things now?
My kids are now 17 and 20 and are wonderful human beings. They are kind, empathetic and sensitive. I am relieved. They tell me that I am a wonderful mother, that they are proud to have me as a Mum.
It’s been 16 + years (most of them undiagnosed), and I am still disabled by this condition (which is now complex), trying to get access to timely help, which is very hard in Australia.
This weekend I had one of those moments of feeling the grief of my situation, for the years I’ve lost and for what the future holds. While I was lying weeping in bed, my 17-year=old daughter came in to my bedroom to lie beside me, saying, “Dad told me how you are feeling, I’m so sorry”. She just lay there with me. Then my husband came in and joined on the other side, both giving me cuddles. I just lay there blubbering even more from being given love and empathy. Then my 20-year-old son entered the room, laptop in hand, and said, oblivious, “What’s going on?” We all laughed. He asked if there was anything I needed or anything he could do for me. I said hugs are helpful right now, but that I didn’t expect him to come do that. But he did. My husband got up and gave space for my son to lay beside me, his hand on my arm.
This was one of the most moving and impactful moments I’ve experienced since being unwell. I am so very grateful for my family and their love, care and support. I also acknowledge that I am privileged in this.
What do you want other moms to know?
Do the best you can, get help if you can. Giving your kids love and emotional support goes a long way! Try not to worry about the things they are missing out on (sports, playdates etc) because in the end, the most important thing is that they know they are loved, seen, and accepted for who they are. Concentrate on the basics of food, clean clothes, etc.
Let go of your own expectations of how you will mother. Lower the bar! And when you think it’s low, lower it again.
Let yourself grieve the loss of who you wanted to be to your children and what you wanted to give them. This is very very painful. It requires letting go and surrendering to what is.
No one is a perfect parent and all children must carry the consequences of this shortfall. In the end all you can do is your best. The rest is not your responsibility. Give them what you can, they will be ok.
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.