Some years ago my son Lachlan was diagnosed with a rare and severe form of epilepsy called ESES. These are some of my thoughts on what I know now, but I wish I had known then to make our journey with epilepsy easier.

 

Ø     It was like a stranger suddenly came to stay, a stranger who was not invited, one that was not really welcome, one who would not go away, but a stranger we all had to accept, learn about, and work out how to manage and live with.

Ø     Learn to accept it

Ø     Learn to live with it

Ø     Make sure you get the correct diagnosis and recognition of what is happening. This is not necessarily as straight forward and easy as would hope, particularly if your child has a rarer form of epilepsy.

Ø     Move forward. Do this by getting as many of the necessary services as you can to support you, your child, and your whole family. For us, this included respite (essential if only to get a decent night’s sleep) physiotherapy, speech therapy, behavioral management support, ascertainment, and the best possible schooling options. These all often have to be fought hard for, but are worth it.

Don’t put your family’s life on hold, waiting for a time when the epilepsy may be controlled. Make sure your partner and other children, as well as your own wellbeing, are not totally swamped, in caring for the child with the disability.