I’m writing today about what it is like to parent a child with epilepsy in honor of Epilepsy Awareness Month.
Having a child with epilepsy means dealing with medical issues:
- Having more questions than answers about the appropriate treatment for your child.
- Worrying all day that the unusual behavior your child displayed might be indicative of a seizure.
- Ambulance trips, ER visits and knowing all the nurses on the neuro unit.
- Calling the neurologist three times in one week because you have no idea what to do after your child’s episodes.
- Being forced to make the most gut-wrenching decision in your life: to disconnect or remove a part of your child’s brain in the hope of a seizure-free life for them.
- Sleep-depriving your baby for yet another EEG and hoping this one will give the doctors the answers they need.
- Searching endlessly for dietary changes, supplements and other natural remedies.
- Remembering to bring rescue medication everywhere you go in case a seizure starts and doesn’t stop.
- Soothing your hysterical toddler who is being connected to the EEG leads.
- Reassuring your middle-school child that wetting the bed was not their fault while worrying that it was probably another seizure, and having no way to know for sure.
- Knowing the horrible truth that sudden death in epilepsy is a reality.
- Entertaining your 10-year-old who is confined to a hospital room for a three-day stay for a video EEG.
Having a child with epilepsy means dealing with educational issues:
- Knowing that you are giving your child medication designed to slow down the brain and then expecting the child to function at school.
- The sick feeling in your stomach when the swim coach calls to say your child had a seizure in the pool and had to be resuscitated.
- The pride you feel when they get back in that pool again once the seizures are under control.
- Sadness and outrage when your child is left out of rewards at school for falling behind due to their epilepsy and the medications.
- Seeing the anguish on your child’s face when they can’t remember something they are sure they know.
- Frustration when you see your child being penalized because they couldn’t get their work done quickly enough.
Having a child with epilepsy means dealing with parenting issues:
- Not being able to sleep at night because you’re worried that a seizure could happen without your being on watch.
- Feeling as if you have no control – because you don’t.
- The helplessness you feel when you see your child seizing.
- Watching your child, exhausted from a seizure, asleep on the couch at 10 a.m.
- The powerful love you have for this child, that despite all of the above, you don’t feel sorry for yourself. Instead, your heart breaks for your baby.
- Caring and loving and never giving up hope!
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