Any parent will tell you that parenting is hard. Parenting while trying to manage a chronic illness is even harder. But despite the plethora of chronic illnesses I have to manage, the one that has made parenting the most challenging is a spinal CSF leak.

My leak, which the experts at Mayo Clinic discovered to be a type of leak called a CSF-venous fistula, began on December 17, 2020. My daughter was 18 months old at the time. When I became nearly bedridden from the pain five months later, she didn’t understand what was happening. She didn’t know why Mommy couldn’t play with her. It had a drastic effect on her mentally and emotionally, to the point that she literally pulled her hair out from the stress. I stare the damage in the face every day and it still crushes me.

Nearly 20 months after it started, and despite multiple interventions, I am still leaking, possibly from new fistulas. I need to spend most of my day flat in bed in an attempt to control the pain and pressure in the back of my head, neck, and back. This leaves me unable to even sit up and play with my daughter, much less be a major part of her life.

My daughter is 3 now. She understands that Mommy is “sick” and that her spinal cord is hurt. She knows Mommy needs to go to Minnesota (where Mayo Clinic is located) every few months so the doctors can try to make Mommy better. One time when I told her that Mommy was still sick, she said to me, “Mommy can go back to Minnesota and see the doctors on Sunday?” She wanted me to go back right away and get fixed. If only it were so simple, sweet girl.

Recognize Your Parenting Limits

Spinal CSF leaks are rarely life-threatening, but are considerably life-limiting. A hallmark of the condition is pain in the back of the head that is worse when upright and relieved when laying flat. Needless to say, this makes doing almost anything that requires being upright difficult or impossible. Additionally, lack of awareness amongst doctors and the lack of specialty centers to treat leaks means leakers can suffer for months to years, in some cases even decades.

The first key step in managing parenting with this condition is recognizing that you now have limits. Much of the time, these limits can’t be easily overcome. But you owe it to yourself to realize that things will be different than you imagined.

What Leakers Say

• “My children give me a reason to keep finding a cure for myself. I’m deeply saddened by my inability to care for them, the stress placed on my husband to care for them, and my inability to teach them the way I planned. It’s very difficult to maintain mental cognition with a CSF leak and this absolutely affects how I want to speak to my kids. Hope and faith that there can be a positive in the future keeps me going.”
• “There’s nothing worse than having an invisible disability like a CSF leak while being a mom at the same time. Your children, especially if they’re young, have a harder time understanding your limitations because they can’t see anything wrong. And as a mother, you’re constantly juggling guilt and sadness – guilt about the experiences and the life you feel you’ve robbed from their childhood and sadness when you watch them experience things with someone else because you can’t.”
• “Parenting with a CSF leak is hard. You are constantly feeling guilty that you can’t be there for your kids like you used too. Fun mommy went away. Just going outside with them while they ride their bikes is a huge undertaking. We all know mommy needs her anti-gravity lay back chair.”

Asking for and Receiving Parenting Help

I’m the type of person who loathes asking for help. Growing up, I was supposed to know everything and be able to do anything with little effort. This tendency unfortunately followed me into adulthood. Also unfortunately, asking for help is something that must be done if you’re parenting with a spinal CSF leak. You absolutely cannot do it alone unless you’re extremely functional with your leak (which makes your suffering no less valid).

In my situation, I rely heavily on my parents and in-laws to take care of my daughter while my husband works. I don’t know what I would do without them. They come in from out of town for a week or two at a time and do everything for her. I’ve more or less handed care entirely over to them. As a stay at home mom, that really hurts. I’m just there for boo-boos and hugs.

What Leakers Say

• “I think the hardest part of having children and a CSF leak is feeling like you are a burden on your loved ones and friends. They say you aren’t, but deep down you know you are. You are having to rely on them now more than ever; physically, emotionally, financially. You need lots of help with the kids, taking them to activities, going to the grocery, driving you to doctors appointments, help with meals, laundry, cleaning. Mommy can’t play soccer in the backyard or host play dates anymore.”

Forgive Yourself

The hardest part of parenting with a spinal CSF leak? Forgiving yourself for your inability to be as present as you want to be for your children.

Quite honestly, I can’t yet bring myself to do this. My daughter is at such a tender developmental age right now and I feel like I’m failing her. I’m trying to force myself to accept that this situation is out of my control and that there’s nothing I did wrong to cause it.

But forgiving yourself is possible and necessary.

What Leakers Say

• “It’s depressing thinking of all the things you can’t do. There comes a point where you have to try to be positive and thank God for the things you CAN do. You can’t give up! You need to stay strong for your mini- me’s.”
• “I forgave myself when I saw how strong, beautiful and resilient my children had become in the face of my CSF leak. They are amazing and I have so much more time at home to love and appreciate them despite being bedridden. The world forced me to slow down. To be more present with them in the precious moments that I have with them before they grow up and leave. To lay quietly listening to their hearts and watching funny movies with them. To enjoy every second that I am able to attend their sports events. Because I realize exactly how precious each moment is. Because the moments have been limited by my leak and I no longer take them for granted.”
• “It’s my greatest heartache needing the greatest act of forgiveness not only of my own guilt in feelings of failure but forgiveness of the medical system that has greatly failed me hurting not only me but my children.”

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Parenting with a spinal CSF leak is not easy. It often feels impossible. And without help, it can be. But if you’re a leaker, know that you’re not alone. 💜

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