Tough Mothers: Sanela Vatres

May 5, 2022Patient Stories

[printfriendly]

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.

Tough mother: Sanela. A photo of a woman in a hospital bed with a quote that reads, "It's okay to ask for help. Let them learn new things, and let them do it their way, not your way. I have always been that mom who knew where everything goes in the kitchen, in the fridge, in the pantry—but it's okay if things are out of place."

How many children do you have?

I have three kids.

How old were they when you first started experiencing symptoms?

When my symptoms began, my children 22, 19, and 15.

What has been the most difficult part of mothering while living with a spinal CSF leak?

It was tough overall, but the most difficult part of mothering was that I was not able to comfort them. I couldn’t ease their depression/anxiety away about not knowing when I would get better and wondering if I would I ever be okay. I remember my daughter was graduating college, and I didn’t have the energy to watch the entire online graduation ceremony, I barely had energy and money to get her a homemade cake just for her graduation photos. Tears!

What was the most creative way you managed to parent while ill?

There was not much creativity because my leak started in the beginning of COVID, the time when everyone was lost and closed in their little personal space, and when everything had shut down. It is hard to be creative when you are on your back 24/7 and with social distancing and no help from the outside world. Luckily my oldest daughter had cooked before, and her meals and ideas saved us. My mom’s and sister’s meals were the best! Helping to cook remotely can be draining. Most of the time, I didn’t have energy to question anything as long as it was done.

How are things now?

Thanks to my wonderful team of specialists, it’ll be two years since my leak was successfully fixed. Things are back to normal for me, my husband, my kids, my siblings, my parents. For all of us. God is good. Thankfully I fully recovered and am back to living the life that my kids saw me live prior to the leak. I love my family, our cat Luka, my work, and I love that I’m back volunteering.

What do you want other moms to know?

I want other moms that are struggling with spinal CSF leak to know that you need to continue parenting. It’s okay to assign chores, it’s okay to ask for help. Your kids see your struggles and are most likely delighted to help. Let them learn new things, and let them do it their way, not your way. I have always been that mom who knew where everything goes in the kitchen, in the fridge, in the pantry—but it’s okay if things are out of place. Your love does not change for them. Your kids are your world. And most likely they learn compassion, responsibility, and possibly advocating for themselves from going through this experience with you.