Eduard asked me a question the other day that blew me away. “Mom, why did I have to get epilepsy? Why can’t I just be normal?” Wow. It took my breath away. I had to stop what I was doing and look at him. Lost for words, I just hugged him.
A little bit of Eduard’s life history is appropriate here: He was already diagnosed with ADHD when he was 3. In and out of doctor’s surgeries, he was diagnosed with Frontal lobe epilepsy at age 8. At age 10 (just after we moved to PE), he was miss diagnosed with Autism, taken off all his epilepsy meds, having fits everyday for the next two years, while we tried to get a second opinion. It was only in 2018, after going to Provincial Hospital, did the neurologist did a MRI and proved that he has epilepsy, put on the correct medication, and today he is a wonderful, strong 15 year old, free of fits. But having to go through all this turmoil in his short life, it left some emotional scars, and despite all this, he has turned out a wonderful inspiration – without knowing it.
Coming back to the question: It took my a while to answer Eduard. Because it made me emotional and because my answer will affect the rest of his life.
Why do we have to do through such turmoil in our lives? Why can’t we just be normal? Why can’t life just be easy….
But why do we want to be normal? Normal is like putting everybody in the same little box. We must act the same way, be the same way, think the same way. Normal is saying you are not unique. It’s limiting your potential to be you, limiting your quest to make a difference.
Eduard can never be normal,even if he tried to be. He has never learned what it is to be normal. His only reference in life is how to be different, how to do life differently to others. I so wish I could be like him. To be naturally different.
Most of us was brought up with boundaries as to never stand out in a crowd, how to be socially accepted. And now I’m not talking about manners or behavioral acceptance. This is dealing with being yourself, to not be changed by what others think you should be.
I counter questioned Eduard: why do you want to be normal? He replied, saying that maybe people would accept him more, he would have more friends. Wow. What a number society has played on us. Even at 15, being home schooled, he understood the social ques, understood the demand society placed on him. And because he craved acceptance, he would give up his “being different status” just to fit in and become normal.
Having epilepsy and all the sensory discrimination that goes hand in hand with this, made Eduard believe that his was not accepted. How many of us feel the same? Because we are not perfect, we are not accepted. And this is the biggest load of nonsense!
This is what I told my son:
“Having epilepsy doesn’t make you unacceptable. Epilepsy is not who you are. Epilepsy is just a tool given to you in which you change other people’s lives. How you use that tool will determine how you live your life. You are Eduard, not epilepsy. Not the boy who reacts differently to others. You are Eduard, the boy with a powerful message to share. Right now, it may not seem so. but you are still in training. Super heroes can’t just go out there and save the world, they need to learn how to use their ability first before they can use it to do good. And we don’t get it right the first time. We stumble and fall many many times. Your story is being written as you learn. And because you are so different, people have so much to learn from you. There are many young kids out there who also have the same struggles you face every day. But they do not know who they are yet. They are not blessed with people around them who understands the journey you walk every day. And that’s your super power. You are Eduard, the boy who has the ability to change lives. You are different, yes, but that’s what makes you unique. Many people wants to be like you, because you don’t allow the world to change you. Those who matter will come into your life and those who doesn’t will fall away. And those who stay, they will be true.”
I learned such a powerful message through this: no matter what I go through, no matter what I look like: if it makes me different to others, so be it. I want to be my own person. I want to be unique. It doesn’t mean I want to stand out in a crowd, it just means I don’t want to be remembered as just Elmarie. Let me be remembered as someone who knew who she was and wasn’t afraid to be it.
Embrace who you are, imperfections and all. If you are going through some life changing processes, embrace it. Instead of asking why me, ask why not me. Rather figure out how the situation can make a difference, don’t dwell on the negativity of it. Be yourself.
Eduard also learned something valuable out of this, and I can see it has given him peace. It’s okay to be different. His illness does not define who he is. All he needs to be right now, is Eduard, and in being himself, he absolutely becomes a blessing to all those around him, despite of his circumstances.
May this be true for you too.
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