March is Epilepsy Awareness Month - Grandma's Story

The future can turn on a dime…
 

 

Five years ago this month, on a fine, sunny afternoon, our guy, our second grandson, came to visit. At 2 ½ he was growing, thriving, learning, and he wanted to play and have dinner at Grandma and Grandpa’s house. We welcomed the opportunity to spend time with him alone and were thrilled at his growing independence.

There was nothing unusual about this day, no clouds gathering on the horizon, no pictures falling off the wall, no birds in the house, nothing foreshadowing the events that were to follow. His mom dropped him off and he played with his toys in the living room under his grandpa’s watchful eye while I started dinner in the kitchen. Life was good.

Suddenly Grandpa was yelling – Something is wrong with C. Help!

I rushed to the living room to see my husband cradling our limp and unconscious precious baby in his arms. I took him and held him, noticed his body was twitching. His eyes rolled back, strange clicking noises were coming from his throat. I cursed, I prayed don’t let him die – help – please. I cried. I remember saying – call 911. How was I going to explain this to my daughter?

 He must be choking, I thought. I turned him face down across my knees, thumped him on the back, turned him over again and searched his mouth to see if I could feel an obstruction – all the wrong tactics to handle what was actually wrong.

But I didn’t know. Until this point, I had only seen a couple of seizures when I worked with children with disabilities. Out of context, I didn’t recognize what was happening. The seizure may have lasted for a minute or an hour – the fear of losing the little guy kept me suspended in time while I held his trembling body. I had never been so scared. My husband, who spent 25 years as a police officer, had never been so terrified.

 

Then our guy started to come around and I gently laid him on the floor and sat with him, stoking his forehead, his arms, desperately wanting to wake up from this nightmare. The paramedics arrived. His mom arrived. Off they went in the ambulance – the beginning of a very long journey.

 That moment, that blink of an eye, that turn on a dime, changed us all. Some of us were broken, some of us became stronger. Some pieces of our old lives survived, some parts were gone forever. Some of us were tougher and more committed than others.

This experience and the years that followed changed the core of my being. Until then I had always flown by the seat of my pants, trusting that things would work out and everything would be okay. Albeit naïve, it was a great philosophy. I became more responsible, more thoughtful, more organized, but less trusting, less secure, less optimistic. More sorrow, fear, and stress have been added to my life but also more joy, more appreciation, more determination, more acceptance. Bad and good combined.

Five years later, I persevere with the hope that our guy will have a rewarding future and an understanding that he will have limits. The trick is to find the right balance. Life is good.

Recently our guy had an appointment with the big guns, his pediatric neurologist. They see each other semi-annually to review progress, setbacks, drugs, symptoms, concerns, new procedures – all that worrisome stuff that never ends. It was a difficult appointment for his mom for reasons any mother would understand and for our guy because he will have to get some “pokes” (blood work) in the near future and he doesn’t like “pokes”.

But his sense of humour remains intact. When prodded by Grandpa (who should know better than to ask questions during a favourite television show) how his visit to the doctor went, our guy said, “He hit me with a hammer.” Subject closed. (Testing reflexes, I’m guessing.)

 For the adults in our guy’s life, the results of the appointment weren’t so much a surprise as a disappointment. His mom is a little more specific. She says, “In terms of kids with Doose Syndrome, our guy is doing well. Not great but not bad. However I got the "hard talk". The gap between C and his peers will continue to widen, his fine and gross motors skills will always be delayed along with his social, emotional and cognitive abilities…. One thing I know is that no matter what, he is one of the most inspirational, amazing men I know!!” How could it be otherwise? He has a pretty amazing mom.

Our guy continues to inspire me too. He is silly, he is fun, he is smart and he is quirky, mostly in a good way. He amazes me every time I see him. He has enough optimism for both of us which gives me the hope that one day people will understand epilepsy and not be afraid …that they will know that seizure disorders cause symptoms apart from seizures…that when a small boy finds it hard to line up at school, or misbehaves in a restaurant or at the grocery store, it isn’t a result of poor parenting but the consequence of a small brain misfiring and the effects of the drugs it takes to keep that brain on the straight and narrow. My hope is that those parents who hug their perfect children close and roll their eyes at our guy, come to realize that their lives too, can change, in the blink of an eye, at the turn on a dime.

 

http://www.epilepsycalgary.com

http://www.epilepsy.ca