How do you do it? Staying so strong living in a world where you feel like you have no control. I struggle with minor control issues as I’m sure we all do to some degree, but to live everyday with such an unknown…All I have to say is “I’m amazed at your strength!” I truly admire each and every person facing the world with epilepsy, you have no idea how strong you are even if today you just managed to get out of bed. I myself am a parent of a child recently diagnosed with a unknown seizure disorder, knowing his body may lose strength and fall at any moment is damn well terrifying.
I have so many fears for my child, he may or may not out grow his condition. I’m a planner as I mentioned before and I have minor control issues due to my anxiety, so that got me thinking about my sons future. If he continues this journey with epilepsy the one fear I have is that he will settle in relationships. I’m sure it is not easy to find a partner with such a crippling disease, but I want to send a message to each and every one of you…Do not settle, my dream for Maxwell and for everyone with epilepsy when looking for a partner, “Would that person catch you if you fall?” Answer this question for your own relationships, this is what you deserve and truly need. Maybe my son will not out grow his seizure disorder, but one day when I lose control over being there daily to catch him; all I ask of his partner is to never let him fall.
Rewinding to current times, I worry so much that I realize I can’t keep worrying like this. Panicking will not make me stronger and for Maxwell I need to stay strong. Recently I joined Facebook groups for epilepsy seeking advice from adults with epilepsy on what would help them during a seizure. I asked one woman specifically and her response was the perfect advice that I longed hear. She said “Stay calm and do not leave his side till the seizure is over.” Then continuing to tell me how she had many seizures where she lied on the floor alone, aware and terrified. Her experience broke my heart into a million pieces. I’m sure that it is a terrifying situation and I do not think before having a child with epilepsy I could assist anyone with a seizure, but that person’s comment got me thinking. If I saw a man, woman or child seizing in public now after everything I’ve experienced, would I approach to assist? YES of course, I’m not saying I’ll be the best qualified, but I would be there to help as much as I can. That is more than I could have handled before having a child with a seizure condition, I was unaware of how much just being there could help. Which brings me to my next subject…
Most people are just scared, while you’re having that terrifying moment lying on the floor and with no control over your body, most of us are crippled mentally and are unable to help, I’m sorry for that! Just remember there will always be people that can’t handle epilepsy, but there are so many more willing to help and be there for you. Educate your friends and family, let them feel comfortable talking to you about your condition and tell them how they can help you. If you take the first steps in allowing people to be educated about Epilepsy then you can take back some of the control you lost the day you had your first seizure. Prepare for your seizures, take your medicine, surround yourself with people educated about Epilepsy, don’t ever settle for a partner that will not catch you when you fall and most importantly know you are so incredibly strong!
Love, a mother who wants the best future for her son possible and for everyone suffering from Epilepsy