My kid’s going to die. Is yours?

The thing that sets parents of kids with special needs apart from other parents is simple. Death. The rule is that parents die before their kids do. That’s the way it’s supposed to be. Everyone knows it, and everyone accepts it. Kids are not supposed to die first. It’s against the rules.

When you have a kid with special needs, all bets are off. Nobody plays by the rules.

This was driven crashing home to me recently. My friend’s son died unexpectedly. One day he was there, and the next he was shockingly and heartbreakingly dead. There was no accident; his body simply failed to continue living. I had never met him but I was blindsided. I had forgotten. It all came rushing back to me then, all the panic I had felt for months after Eric was born, all of the middle-of-the-night pleading, the bargains, the all-night vigils, the waiting and fervent hoping for him to take the next breath, and the next.

Every parent plays this game. I did, and not just with Eric. I call it Baby Monitor. You know that game? You lie awake with your ear glued intently to the monitor; your baby is in the next room, or downstairs. You’re listening for the regular noises you’re used to hearing, the sounds of breathing. When the sounds grow faint, you could go down and check but instead you play macabre mind games: what if he’s not breathing? What if you rush stumblingly down there and his loved little body is limp and you’ve forever missed your chance for that one last whispered “I love you” that you breathe into the tiny shell of his ear while you inhale his sweet scent?

You play the game until you can’t stand it anymore, your breath coming in loud ragged clumps as you imagine the tiny coffin, the tiny headstone, and your life so forever changed that you don’t know where to look or what to say or to think. You play the game until you either rush downstairs, desperately putting your hand on his tiny warm chest to feel his little bird-heart beating and the rising and falling of the breath you strained to hear through the monitor, or you hear your baby snuffle and sigh and the game is suddenly over. You’re back in your body again, breathing, and you tell yourself how silly you were. That there was never anything to worry about. That everything is fine. That it was just a game.

Except with some kids the game is real.

When Eric was small I used to lie awake next to him for hours, willing him to take the next breath. Just one breath. I’d hold my own breath whenever the pause between the rise of his chest and the next fall seemed to take too long. When it did I’d shake him a little and call his name as if that would help him to remember to breathe again, to remember where he was. He was just forgetting to breathe, I told myself, just letting himself drift along in some peaceful state of baby-nirvana and it was my job to make sure he remembered, to call him back from whatever warm place he went to and to remember to stay here. With me.

At night I whispered urgent pleas to him, asking him to stay a little longer. To stay and to grow up so I could someday see who he was. To stay so I could feel him near me. He was a part of me and I wanted him close.  I had known him forever, somewhere, and I wanted him here where I could touch him, where I could say his name right into his eyes.

His heart-response always was that he was tired, so tired, but that he’d try.

I figured that if I wished it hard enough, I could keep him alive. I could keep him here. I could keep him breathing and wanting to be here. It’s a terrible burden, this taking on of the responsibility for another life. We are not meant to bear the weight of another as well as ourselves. The tension of those months was unbearable. It kept me awake for weeks on end. It wore ragged holes in me. It shattered my heart.

So many parents have so much more to bear than I did with Eric. He was one of the lucky ones: he was only small and fragile. So many other kids have heart issues, surgeries and more surgeries, and really precarious lives. So many kids live just on the edge every day, walking a fine line between here and not-here. Eric grew, finally, and he’s now a sturdy kid, on the small side maybe and prey to every respiratory infection known to man, but sturdy. My worries about him have a very different flavor now than they once did, and these days I take his breathing for granted. Like we all do.

I believe that death isn’t forever, that we are all a part of some great All That Is, but I expect life to play by the rules. There’s a good chance that Eric will still die before I do. But I can push that thought aside again for awhile until another reminder comes crashing into me, another reminder that sometimes in life there just are no rules.