What it really means to have epilepsy

To a child, his siblings, parents, and community

By definition, epilepsy is a condition in which a person experiences multiple seizures, but having epilepsy means much, much, more.

To a child, having epilepsy means you will never be invited to a birthday party, a sleepover, or even your best friend’s house.

It means you will join a football team, and work harder than most. Your coach will put you in the game, but only for the last five seconds; then run the clock.

Your friends will not pass the ball to you during basketball. Not once. You will wonder why; you will feel something is wrong with you. Perhaps you are not good enough, even though you could make every shot. You come home and silently cry.

Having epilepsy means you will go to epilepsy camp! You will swim, canoe, rock climb, go horseback riding, and make the best friends of your life!  If only for a short while, you will feel normal again.

You will meet other children who have epilepsy, and die. You will lie awake at night, and pray you don’t’ die too.

Having epilepsy mean you will be stronger, more courageous, and compassionate. You will be wise beyond your years.

Having a sibling with epilepsy means you will be an advocate! You will be more confident than most, and will stand up for your brother, no matter what the cost. You will be so compassionate. You will be loving. You will be strong! Like other small children, you will play with dolls. Dress them, feed them, burp them, and then give them Diastat. You will know how to use an ambu bag. You have seen your mom use it so many times.

Having a sibling with epilepsy means you will know so much at the young age of five.You will know how to check your brothers heartbeat, how to turn him on his side, how to care for him when he cannot care for himself. You will not be taught this, but you will learn. You will be with him when he slips into the scary world of epilepsy. You will be with him when he climbs the highest tree; and falls. You watch him toss the football, and then shake on the ground. You will be scared. But you will be BRAVE.

Having a sibling with epilepsy means you will miss your mommy and daddy, and your brother too. They will be gone so much; at the doctor, at the hospital, and caring for your brother. They will be proud of you, the strong, caring child you have become, and will always, always love you!

Having a child with epilepsy means your hero’s will be different, not NFL players, or even famous musicians. Your heros will be; the speech therapist who cheers when your child says his first word, the OT and PT that cry when your child takes his first steps, the paramedic who saves your child again. Your hero’s will be the PCA that will raise money so your child can go to camp, the teacher who never gives up, the school nurse who has your number on speed dial, the pastor and church who will pray with you. You will thank god for the nurses at the hospital who will know your child by name, and watch him grow up. You will cry when the doctor sits at your bedside, and holds your hand. They will be your hero’s and your will thank God for them.

Having a child with epilepsy means you will never keep a job for very long. You will be an unreliable employee. You will take off for multiple doctors’ appointments, seizures at school, and another hospitalization .You will never, ever, have money. The hospital bills, the doctor’s co pays, and the prescriptions cost more than you will ever make. Eventually, you will realize having your child is all that really matters.

Having a child with epilepsy means you will never sleep. You will check on your child throughout the night. You will make sure he is still breathing, still with you. You will be so tired, but you will not fail him.

You will make friends with other special needs parents .They are the ones who really understand you. You will pray with them, laugh with them, and be strong for them. You will hold their hands when their child dies.

Because my child has epilepsy, your child will be more compassionate. Your child will watch mine fall into the scary world of epilepsy, and he will worry. He will care more, he will judge less. Having my child as your child’s friend, means your child will be a nicer, kinder person.

50,000 people with epilepsy in this nation will go to sleep this year, and never wake up. That is more than breast cancer, and ALS combined. As a community, and a nation, that means We Can Do More! We need to research, advocate, educate, be kinder, more accepting, and spread awareness.