I have this recurring dream that my son walks into my room, stops a few steps inside the doorway and starts talking to me. I don’t ever remember what he says. But he’s talking. We’re having a conversation. And then it’s over. Just like that. I don’t have it often. But every once in a while it wanders into my life. I know why. I want to talk with my son. Not to him. Or at him. I want to talk with him.I want to know the sharp edges and soft details of his mind. I want to know what he loves and what he just likes or what makes him feel sad or happy or what he finds ironic.But I can’t. Somewhere, there’s a flicker of hope that one day I will though. And that flicker, is good.
Hope, no matter what anyone tells you, is good. It’s not dangerous. It’s not a double edged sword. It’s not something for someone else whose life has not been unfairly cast into the hard and often thankless journey of special needs parenting. Hope is human. Hope is necessary. Hope is good. It springs eternal. Hope says that somewhere things are better than the pain I feel. And one day I’ll get there. That’s all.
There are two sides to the hope coin that we too often see with parents on the special needs journey. The first is that when hope isn’t hope, it’s control. Our child has a disability. We want that disability to go away. Sometimes that outcome is within our control. Sometimes it isn’t. The reality is, most of the time, we don’t really know what’s in our control. And so we run into uncomfortable ambiguity. What we owe our children is to do what we can with what we have to give them their best shot. That’s all. The slope gets slippery when life becomes about the cure though. Because whether it comes or not, is not in our control. And insisting that it is, is not hope. It’s the desire to control. If there’s one cosmic reality of life that special needs parenting teaches us, is that we are not in control. Forget that lesson at your own risk.
The second side of the coin is when we give up on hope and claim we’re just being realistic. We wave at opportunities to push our families outside our comfort zone or to take on new treatments or therapies that may make an impact. But we focus on the hard reality that many times, these things turn out poorly. And we waste time, resources and emotional capital. This is particularly hard for dads. There was a time when the biggest fight my wife and I had was because we couldn’t get family pictures taken without immense drama. Be realistic I said. We’re not the sort of family that can do these things.Yet we did them. Her hope was stronger than my doubt. And in this area, we grew. No shortage of family pictures here.
Even in our clearest moments, none of us really know what realistic even means. Mostly it means stopping trying the hard things. And eventually closing in on yourself. Hope is the force that keeps our families from collapsing in on the great singularity that is our children’s disability. And the hope we need is a simple one. That tomorrow may be better than today.