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