What Is It Like To Parent A Child Who Has Epilepsy? - The Mobility Resource

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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