Part I: Being the Parent of a Child with Epilepsy is...

Being the Parent of a Child with Epilepsy is:

• Living in a state of constant vigilance.

• Waiting for the next shoe to drop when you don't know why shoes are dropping.

• Being expected to not care about why shoes are dropping--that is, being expected by the medical establishment to be content with treating the symptoms of your child's illness rather than finding and fixing the cause of his/her symptoms. 

• Spending time & energy trying to figure out for yourself why shoes are dropping because it makes no sense that shoes drop for no reason at all and because you figure if you can figure out why shoes are dropping, perhaps it would be possible to stop them from doing so or at least slow down the rate at which they drop.

• Being expected to be OK with giving your child symptom-controlling medications (anti-epileptic drugs or AED's) whose side effects read like a laundry list of the effects of poison.

• Feeling guilty for giving your child these medications

• Feeling guilty for NOT giving your child these medications

• Being expected to be content with the practice of treating the symptoms of an unidentified pathology whose symptom-causing mechanisms are not understood, with powerful neurotoxic drugs whose mechanisms of action are also not understood.  In other words, being expected to subject your child to hit and miss human experimentation in hopes that something might eventually, for reasons that will remain unknown, work for him or her to control the symptoms of a problem that remains unknown..

• Supervising your child, whatever age he/she is, as if he/she were a toddler incapable of being left alone in room without you.

• Having no choice but to evaluate friends, family members, other families, and teachers in terms of whether they seem aware enough to keep your child safe and whether they seem calm enough to be able to do what needs done should your child have a seizure while left in their care.

• Living in anticipation of the day when technologies (like the Empatica Embrace) will give your child more independence while allowing him/her to still be safe

• Having been made aware of SUDEP (Sudden Unexpected Death in Epilepsy, a condition that strikes otherwise healthy young people with epilepsy killing 50,000 of them a year) by SUDEP awareness campaigns only to find that there's not a damn thing you can do about it anyway. 

• Waking in the night in a panic until you can establish that your child is still breathing.

• Being deeply relieved when your sleeping child responds to your touch with spontaneous movement.

• Learning to sleep hyper-vigilantly and learning to sleep so that you wake up periodically and go back to sleep again quickly.

• Knowing the exact location of your phone and your child's life-saving emergency rescue medications at all time

• Never leaving the house with your child without having several Schedule IV controlled substances on your person.

• Being in an absolute panic should you leave the house with your child but without those several Schedule IV controlled substances

• Dreaming of the day when you (and other parents of children with epilepsy) can get your hands on certain Schedule I controlled substance and give be able to give it your child on a regular basis in the hope that it will help your child's brain to find and keep that wonderfully magical balance between excitability and inhibition.