I have but one direct connection to Epilepsy, and that’s through my 16 year old son. I’m going to stray a bit from the “assignment” and write about what it looks like from a caregiver.
Four years ago, he had his first seizure on a school bus. Relatively alone and scared, he was rushed to the hospital. A year and 5 seizures later, he was diagnosed with Epilepsy. Fast forward to today and he is now living with 4 different types of seizures. They can range from staring spells or a foot tremors to a full body tonic clonic (grand mal) seizures, sometimes all four one right after the other.
As the caretaker of someone who lives with these seizures, it’s, honestly… exhausting. Someone told me while I was pregnant, that when you become a parent, you stop being the picture, and you become the frame. A structure needed in their lives to help them shine. But when you have a special needs child you become the nail that holds them up, and the whole house that tries to keep them safe.
What does a typical day look like for a caretaker? Its getting very few hours of sleep at night. Things that go “bump” in the night could be dangerous, and NOT hearing the “bumps” could be even worse. Its medication reminders, and double checking med storage box to ease your mind that the pills were ACTUALLY taken. Its having a phone on you all day, at work while your child is in school. Its rolling your eyes at the “hands free’ law when driving because you know if the phone rings while your on the interstate there could be bad news on the other end. Its being on a first name basis with the school nurse who you speak to at least twice a week, just to “check in”. Its making sure that he eats the right things because what if those preservatives or sugar or gluten ect is the trigger for his seizures. Its asking repeatedly “Are you feeling ok? you look pale”, or ” did you take your evening meds?”. Its checking on him before you lay down to rest at the end of the day, just to get up and check on him a few hours later. Repeating this cycle over and over. Day after day.
He has so much support that it can sometimes be overwhelming, but in the best possible way. But we, the caregivers, are forgotten. We have sleepless nights, we comfort when its needed, and we hover. We, sometimes, witness the seizures. There is no harder job on the planet, than being a parent, or a loved one, watching the center of your universe slip in to the unknown. To watch their eyes go blank, to hear them struggle, and to watch them turn blue. Kneeling beside them rubbing what ever body part you are close to, telling them that they are ok, and that you will see them on the other side. You know they can’t hear you,its wasted breath on your part, but you say it for you, to keep yourself calm. But the flip side is, if your lucky, you can see their bodies relax and rest, and the normal healthy color return to their faces and that small smile when its YOUR face they see when they “come back”. But when we stand up, after assessing an injuries that may have occurred, we still have to cook dinner and do the laundry. We give plenty of hugs and kisses to the people in out charge, but for us, we are typically forgotten.
I want others to know that its not just ONE person in a family who has epilepsy. he goes through the seizures, but the whole family is effected. We all go through it. Not to the extreme that he does, and God knows that i would take it all from him if I had the power, but he is by no means, alone.
I don’t write this because its attention that I seek, but more understanding. Understand that I’m not in a bad mood, but maybe it was a rough night at home. Understand that yes, the seizure is over and the house seems to be picking up where it left off before the seizure, but inside, I am reliving every single second in slow motion in my mind. Tears and self-care are, in most cases, a luxury and not a priority. I do all of these things for him, not because I have to, but rather because its a privilege to have this beautiful creature in my life.