March is Epilepsy Awareness Month in Canada

Recently, my second grandson asked me if he could bring the Transformer movie to my house so he could watch it with Grandpa and me. I asked him if it was scary.

 He said, “No but you will cover your eyes, Grandma, because there’s lots of shootin’.”

I said, “I don’t like shooting. I would be scared.”

He said, “Its okay Grandma. Don’t worry. You can sit close to me. I am brave.”

Instantly, I felt a lump in my throat because, in all truth, this grandson is the bravest person I know. Not brave in a flamboyant, jump into the river and save someone drowning kind of brave, although knowing his six-year-old heart, I don’t doubt he’d do that if the occasion arose, but the kind of brave that makes a very young man with a seizure disorder meet each day with optimism and dignity. His condition is known as myoclonic astatic epilepsy or Doose syndrome which is characterized by multiple seizure types and presents him with several other unpleasant physical and mental obstacles to overcome.

As I write this, he is in a good place regarding the seizures – his meds are effective for the most part and have allowed him to be a kid, to grow and to learn and to interact with his brothers and his friends in grade one. However, the meds, the syndrome or a combination of both have left him tired, fragile and unable to concentrate. That’s where bravery comes in.

This little guy doesn’t give up. He doesn’t withdraw or strike out. He does the best he can under really harsh circumstances and faces every situation head on. His peers are racing ahead of him by leaps and bounds and his school experience has been less than nurturing this year, yet his quiet gentle nature has earned him the friendship and respect of the children in his class, many of whom step up to help him if he falls behind .

Our boy doesn’t fit in a box and he’s okay with that. He handles each situation as it comes and although some tasks take longer, or are too complicated for his little hands that shake with a tremor, he does his best. He doesn’t complain. That’s bravery.

He handles the medical encounters the same way. Many of the procedures he has endured are not pleasant but he takes a deep breath and doesn’t object. His beautiful brown eyes may fill to the brim but there is no fuss. That’s bravery.

I don’t know what the future holds for this young man, but whatever the challenges, he will fight to overcome them. There’s a saying, what doesn’t kill us makes us strong, and it’s true. The challenges he faces now are forming strength and resiliency of character. But that can be destroyed by too many harsh words, too many people implying that he’s not good enough, he’s not measuring up, he’s different. It can break a gentle spirit.

Epilepsy doesn’t mean my grandson is not bright or that he can’t learn. It doesn’t mean that he won’t be able to have a successful life when he grows up. It does mean that there are some things he likely won’t able to do, but there are others he will excel at.

Epilepsy is still misunderstood in our society.  People with seizure disorders face an uphill struggle and the key to ending that struggle is education. If you know someone with a seizure disorder, if there is someone in your child’s school that is affected, or, if you just want to be a better informed human being, educate yourself. Understand the facts and dispel the myths. Help children with epilepsy grow up to be accepted, valued and confident. And in getting to know them, they can probably teach you something about patience, perseverance and bravery.

March is epilepsy awareness month in Canada. For further information go to www.epilepsycalgary.com or www.epilepsy.ca