The Marriage Price

In a family with children, there are always stresses. Hell, in families without kids there are stresses. But there's something about a disability in the mix that creates a kind of slow-burn heartache that's impossible to describe to outsiders.

This has nothing to do with self-pity; I think parents of disabled kids are heroically un-self pitying. It's more about the psychic aches and pains that lodge themselves inside us, and seep out unexpectedly, corroding the bond between husband and wife.

We work so hard, at least my husband and I do, to walk the walk of raising our kids together. United front, etc. But it can be so exhausting. And balancing the anger and expectations of our non-disabled kids just adds another bit of complexity.

Sometimes, I find myself retreating to a place of quiet, smoldering fury. I'm not angry at anyone; at least I don't think I am. I just become this thing of coiled anger, tired of trying to be supportive, encouraging, diplomatic, loving, indulgent, strict, observant, and on and on and on. Fatigue morphs into something ugly. It passes pretty quickly, but then I realize I've lost a day, or perhaps a weekend, time I won't get back. And that of course leaves me with at least a slight feeling of residual anger.

The real pain comes when I'm in that state and my husband tries to reach out. He'll want to hold my hand, and I'll ball up my fist, like a spoiled child. He of course assumes it's something he's done; I would assume the same. I could tell him what's bothering me, but at that moment, I'm just so tired of talking about the kids, about Noah, about his being stuck that day, of Ariel's being angry, of the weird looks we got in town because Noah was talking and gesticulating more strangely than usual in public. I just don't want to deal.

Years ago--whether as statement of fact or warning, I don't know--my husband told me that most marriages involving disabled kids end in divorce. It's easy to understand why. Yet it turns out that some of the best marriages I know are the ones that involve disabled kids. Maybe that's because we work ten times harder than other couples to make it work. We peel our hearts from our chests and put them squarely out there, on the line, for our kids to appreciate and/or stomp on. And we know that abandoning one another would have consequences way beyond those in a typical divorce. We'd be taking true dependents down with us. None of this is reason for someone in a horrid marriage to stay in one for the sake of a disabled child, but it puts our choices in a somewhat different context. The price of abandoning any marriage is steep. For couples like us, the price is just that much higher.