You Are Not Alone: Letter to Parents

Download the letter [PDF–170K]

Dear Parent,

As a parent with seizures, and now a mom of a preteen with well-controlled seizures, I struggle with the same issues so many other parents have. My husband and I need to stay on top of the medical and treatment issues, yet also consider how the seizures are affecting each of us. We need information, guidance and support to best cope with the epilepsy and help our son learn to cope as well. We need to know that others are out there and that we are not alone.

When my son was little, I could manage the seizures and medications for him. I could be the ultimate “mom advocate.” But he isn’t little anymore—it’s up to him. My job has changed—the best thing I can do is to prepare my son to manage his own health and to be there to support and encourage him every step of the way. I want him to keep good seizure control and cope with the ups and downs, but more importantly, not let epilepsy get in the way of his dreams and his life.

How do we do all this? Well, we don’t do it alone. And we must take care of our own needs, if we are to help our teens learn to take care of theirs. The You Are Not Alone kit was made to give you some building blocks of information and guidance to let you know you are not alone. The kit is designed for parents of teens with “well-controlled” seizures. That means the seizures may respond well to medical treatment, but parents still may have many questions and concerns.

This kit covers some of the major issues identified by real experts—parents themselves. Use it to talk about the issues with the people who interact with you and your teen. Use it to learn how to support and encourage your teen to take charge and learn how to manage their seizures and their life.

Sincerely,

Patricia Osborne Shafer