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