You as a Parent: Self-Care

This is perhaps one of the most neglected, yet most important, chapters. Because in order to care for your child as well as you can, you first have to care for yourself. This is not selfishness but a necessity.

"Put On Your Own Mask First"

Remember the safety announcement on airplanes: "Put on your own oxygen mask first, then help your child." This principle applies fully to the parent of a child with epilepsy. A parent who is exhausted, sleep-deprived, and worn out by worry cannot give their child the best support over the long run. Taking care of yourself is part of taking care of your child.

Accepting the Emotional Burden

Parents whose child is diagnosed with epilepsy experience powerful emotions like fear, grief, anger, helplessness, and anxiety. These feelings are completely normal, and there is no need to be ashamed of them. Sometimes you may feel as if you are grieving a loss — grieving the "carefree" childhood you had imagined. Accepting these feelings rather than suppressing them is the first step in coping with them.

Practical Self-Care Tips

• Protect your sleep. If nighttime seizures keep you on alert, take turns with your partner if possible, or ask for help from people close to you.
• Learn to ask for help. The belief that "I have to do everything on my own" is the quickest path to burnout. Teach first aid to people you trust so you can take a break now and then.
• Don't neglect your own health. Don't skip your own doctor's appointments, nutrition, and physical activity.
• Allow yourself small breaks. A short walk, a chat with a friend, or a hobby you enjoy — every moment you set aside for yourself without guilt is valuable.

Getting Support Is Being Strong

When anxiety and burnout become unmanageable, getting support from a mental health specialist is a wise and courageous step.

Coming together with other families of children with epilepsy (support groups, associations) can also be very empowering. Hearing someone who has walked the same road say "I went through this too" is priceless. You can find information about these kinds of groups and associations in the Appendix.

Guilt and the Feeling of "Not Being Good Enough"

Being the parent of a child with epilepsy often brings feelings of guilt: "I missed a seizure," "I forgot the medication once," "I can't do enough." These feelings are very common but are usually unfair. You are doing the best you can, and no one is perfect. Forgetting a dose or not being there for a seizure does not make you a bad parent. Show yourself the same compassion you would show your closest friend. You don't need to be a perfect parent — being a loving parent who keeps on learning is enough.

Managing Anxiety

Not knowing when the next seizure will come can lead to a constant state of being on alert and to chronic anxiety. Over the long run, this sets the stage for burnout. There are some ways to manage anxiety: relying on knowledge (learning from trustworthy sources like this book reduces uncertainty), having an emergency action plan (being prepared gives a sense of control), getting support, and giving yourself regular breaks. If your anxiety is seriously affecting your daily life, getting support from a mental health specialist is an extremely valuable and appropriate step.

Keeping Hope Alive

On hard days, keeping hope alive for your child's future can sometimes be difficult. But hope is not a fantasy; it is an attitude grounded in facts: most children become seizure-free, medicine advances every day, and a long, full life lies ahead of your child. Don't see a bad day as a sign of the whole future. Notice the small steps of progress, enjoy the good days, and remember that you are not alone on this journey.