I haven’t posted much over the past few days.
Here’s why: We’ve just returned from spending several days with families of children with GRIN1, the same rare condition as my son Bryson. (The picture above shows Olivia, Owen and Bryson; all have GRIN1).
It was an amazing and uplifting experience. After years of feeling alone without a diagnosis, we have finally found a community of families just like ours.
But that’s not the only reason it was so great to spend time with these families.
It’s also that these are some of the kindest, most positive people I have ever met.
How is that possible?
Do terrible things happen more often to good people?
You might expect these families of children with severe developmental delays to be sad, or resentful, or to mourn the fact that their GRIN1 child isn’t healthy or “normal.”
Back before I had children, I remember learning that someone I knew had a daughter with severe autism, so bad she couldn’t speak. I remember feeling sad for his burden, and wondering how he was still able to go to work every day, and imagining how terrible it would be if I ever had a child with developmental delays.
After my recent kidney transplant, someone mentioned to me how unfair it was that my family had so many health issues. And when we’re at our lowest, my wife Laura and I do feel angry, and do feel unlucky, and do feel resentful.
But most of the time, we’ve accepted Bryson’s condition and are more focused on the positives (how well Bryson is progressing) and the opportunities (what we can do to prevent his seizures, help him learn to walk, and help him learn to talk).
But the biggest change in our lives is that these big health issues really put the little annoyances of daily life into perspective. Little things don’t matter like they used to.
We actually feel like pretty lucky people. Like the other families we met in Pittsburgh, we’ve grown through having these special children.
It’s not that bad things happen to good people. It’s that bad things can make us better people.
This doesn’t mean I’m grateful for it. I would give up any personal growth if Bryson didn’t have to suffer. I would give up almost anything to be able to have a conversation with him — to know what’s going on in his mind.
But it is all a good reminder that when bad things happen to us, we don’t need to become bad people. Or put another way: We don’t choose the shit life throws at us, but we can choose whether we let it make us stink.