Our younger one recently said to me, “When I grow up, J and I will live together and I’ll run errands for him.”
Our younger son is 5. And he has cancer.
And deep down he knows so much responsibility may fall to him someday.
I’m just out of feelings sometimes. He has such a good heart. He loves his brother so much, even when our J-Man often can’t reciprocate in the way he wants him to.
He knows his brother ‘is autism’ (his way of saying ‘is autistic’) and is continually deepening his grasp of what that means. We talk to him about it in terms we think he can best understand as a precocious five-year-old. We are honest without being dramatic. We teach him about respect and acceptance.
But none of us really has a clue what the future holds for any of us. We try to imagine it as best we can. We think through all the ramifications of how it will impact our family now and into the next generation. (Or we don’t think about it because we feel too lost.) We each come to our own understanding.
Dale Jr. is having to grow up much too fast. At 5, he’s had to face cancer and a year’s worth of treatments and medical challenges so far, in addition to trying to understand what it means to have an autistic brother. And he’s had to do this all while navigating the newness of kindergarten, the blossoming social life of elementary school, and every new thing that comes with making friends and adjusting to these crazy things called school and life.
We’ve tried to bear as much of it as we can for him, but often we feel helpless. He worries so much. So much is outside his control. He does the best he can, but fear gets hold of him and will not let go. My heart aches for him, and it screams that we have been rendered so powerless to help him.
When he says things like this, I want to stay alive forever. I want him to be free to pursue his own life, just as much as I want our J-Man to have the opportunity to pursue his. The love Dale Jr. expresses in his simple statement is so vast it’s a wonder one heart can hold it all in.
But he’s too young to have to shoulder all this. It’s hard enough to explain autism and the challenges that come with it to any sibling, let alone one so young. It’s a series of talks so many of us parents face at some point, and honestly none of us know quite how to do it.
For now, we keep things simple. We make sure Dale Jr. knows there’s nothing wrong with his brother; they just each see and understand the world differently than the other, with neither way being right or wrong. We make it absolutely clear that any kind of poking fun or laughing at someone because they seem different is never right. We want him to show respect for everyone, and we encourage him at any time to come to us with questions if he doesn’t understand why someone or something is different.
He’s wise and observant far beyond his five years, and we often have trouble keeping up with how fast his mind is growing. But more importantly I think, his heart is growing even more. He makes people feel liked and welcome. No matter what comes next or what he experiences in life, that will always serve him well. We couldn’t be prouder of him.
I just want him to be able to be a kid, too – to not have to worry about so much, to forestall the days in which these concerns will become an unavoidable part of his life. He should be free to play in the dirt, tell fart jokes, and laugh with his friends without carrying the burdens he has to right now.
But life has given us each other and this journey we are on together. We will make our way along this path because we love each other more than anything. We will find a way because that is what we do.
It’s just a father’s wish that his children’s lives should be easier, both for now and a long time to come. When they cannot be, it hurts terribly. But I love them far more than any hurt, and I trust this will always be enough.