Saturday, March 8, 2014

Thank Heaven for Brothers

Each morning I watch my grandsons as they head out across the large school yard to their respective doors. The youngest goes one way, the other two, our guy and his older brother, go a different way. They have the longest distance to walk to the shared grade 3 and 5 door. In this frigid winter of temperatures in the -20s and high wind chills, trudges better describes their movement across the open playground, heads down against the wind, older brother leads the way, our guy follows in his footsteps.

The scene has repeated itself daily through a long cold February and early March. Older brother turns, offers words of encouragement, frustration or panic depending on how far behind we are on any particular morning. ”Come on,” “hurry up,” “faster,” “run,” “we’re gonna be late!” Big brother has several speeds but our guy has only one.

Older brother is pretty great. He understands that our guy can’t move as fast as he can. He also knows that his brother is physically weaker and gets cold faster than other kids. He is eager to start his day and be with his friends but he knows that once they get to the school, our guy, loaded down with heavy clothes and backpack, doesn’t have the strength to pull open the heavy door. Big brother’s job is to make sure our guy gets inside. Big brother complains about many things but never about keeping our guy safe.

We all hover around our guy – we worry about him. We also wonder what the next neurologist appointment will bring. Good news – another clear EEG, or not so good news – still strange activity happening in his “tricky” brain. And if the news is good then the slow process of weaning the meds will begin and then what? Will our guy go on to lead a drug/seizure free life or will the body and mind breaking seizures return him to a world of strong and dangerous medications. The journey continues.

We watch and wait and in the meantime, our guy is doing okay. He’s a neat kid. Sometimes as they walk across the school ground, our guy straggles way behind and big brother turns around again and again, urging him to hurry. Other times he follows close – very, very close.  Big brother turns to check on him and smack, our guy runs into him. I laugh both at our guy’s up close and personal presence and big brother’s eye roll. They trudge on.

Our guy has his issues and is sometimes labeled by his seizure disorder, but he is so much more than that.  He is the peacemaker, the quiet voice of reason amid his three active brothers. He finds solutions, makes allowances, is wise beyond his years. The other kids like him, ignore his “bad” days and include him because he’s a nice guy and they want to be his friend. His grasp of situations and his determination make my head spin. He has the gift to be able to cut through the crap and see the truth of most situations very clearly. He tells me he doesn’t understand why people say they’ll do stuff and then don’t do it. He’s had a lot of experience with that.

Sometimes his friends tell him he can come to their birthday parties, but the invitation never arrives.  The same with play dates. The kids include our guy without hesitation but their parents, who have seen his outbursts and know that he needs an assistant at school, leave him out and that’s too bad. They would be richer by far if they got to know him. He is in grade 3, but other than family you can count his invitations on one hand. It makes him sad. He doesn’t understand. It makes me sad too.

This close-knit little family forms a protective bubble around our guy and in that way, he is fortunate. So many children with disabilities have no one to advocate for them within their peer group and when parents so easily brush off a child that is different, it doesn’t take long for their kids to follow suit. Bullying happens. Often these kids don’t have the skills or the words to defend themselves and if tolerance isn’t being taught at home, a brother or two comes in mighty handy.

But our guy doesn’t hold grudges. He takes each day as it comes with acceptance, optimism and an open mind. He trudges along, following his big brother. And next year, when big brother goes off to middle school, I have no doubt that little brother will step up and take his place as leader/protector/friend. I find it serendipitous that our guy will likely always have a brother in the same school to make sure the door is open and he’s safe inside.

March is epilepsy awareness month! For more information go to  www.epilepsy.ca

Saturday, January 11, 2014

Chivalry is Dead.


What do you do when someone falls down in front of you? Maybe I’m weird, but I offer what seems appropriate – I hand up, condolences, a sympathetic smile, further assistance if necessary. I need to mention that there are so many kind, caring, compassionate people in the world that I almost, but not quite, feel guilty about writing this post. Maybe I’m off base. Maybe I’m just unlucky when I fall down.

I don’t fall down a lot. I can count on my fingers the number of times I’ve fallen down as an adult. It’s always embarrassing and sometimes a little painful but I’m built close to the ground with ample padding so I’ve rarely injured myself. Usually I feel a little foolish and hope that no one has noticed… or maybe not. Let me explain.The past three times I’ve fallen, more than my knees have been it has bruised.

A few years ago, I was waiting for one of my favourite little guys to get out of kindergarten and I slipped. There was ice under the water and mud and down I went. It was messy – I probably splashed. There were moms standing around, a few dads and school bus drivers waiting in their buses. I wasn’t hurt and I picked myself up quickly with only my dignity injured. Only one young mom approached me and asked if I was okay, was there anything she could do, did I want to go into the school etc.? I thanked her, told her I was fine. Her attention made me feel better. I like to think that’s how I would have reacted. After all, I am not invisible.

Then, last winter I fell while walking the dog on our usual path. Jake was acting like his usual overprotective, foolish self so I tried to make him sit behind me while a group of young people went past. These were not kids, but two couples out for a stroll. I tripped over the leash and down I went.

Embarrassing to do this on the pathway right in front of people, no? I got up and brushed myself off and glanced self-consciously at the passing 30-somethings. There wasn’t a smile or a nod – just what I translated as condescending stares at a silly old woman who shouldn’t be out there is she can’t stay on her feet. I silently cursed them to take their chances on the next patch of ice.

I was angry, not at them personally, but at an attitude that seems to be becoming more and more pervasive. Compassion for others seems to be lost. Don’t these folks realize how quickly the years pass or how instantly their own circumstances could change?

However, Friday morning’s incident was the icing on the cake. When I dropped off my grandsons at school,  I waited on the sidewalk and watched them  go to their respective doors. Then, as I turned to go back to the car, I slipped on ice and fell. No one seemed to notice and that was okay.

I wasn’t hurt. I didn’t expect anyone to come running to my rescue but as I began to pick myself up, a dad and his two kids came toward me. I had to wait as he and his kids stepped around me. Come on! He had to notice me there kneeling on the ground. But there wasn’t a word, a hand, or a smile. Nothing.

For some reason, this shook me to my core. When I returned to the car, I cried, not because I was physically injured but because I felt emotionally hurt, overlooked and insignificant. And I felt very, very sad because so many people are too busy to offer a smile, a hand up or kind word. What’s more, they are teaching their children that it’s okay to behave like that. I am not invisible, damn it.