How to survive a special needs marriage

It's not easy. But we do it together.

Our daughter, 15, has an autism spectrum disorder. Given the statistics — and the mayhem of her three younger brothers — it's a wonder my husband and I are still together.

When Erin turned 13, I wanted to hit the pause button. Seeing her body outgrow her mind terrified me. And as my marriage approaches its 18th year ("almost an adult," a friend noted), a part of me feels the same way. We've made it through our fair share of "for better or worse." Who wants to "grow up" and see what "sickness and health" lays ahead? Let's just stay here.

Sometimes I look back on those two people exchanging vows on a late September afternoon nearly two decades ago and can't help but think how naïve they were.

As all seasoned couples know, standing before your friends and family promising, with whatever words you choose, to stick by this person in good times and bad — you really have no idea what you're saying. They are just words and you have to say them to make it official and to get on with the party. This is not to say you don't mean them. But you simply cannot know how to love someone in good times and in bad until you are actually muddling through hell with them. Who can know what for better or worse means when your greatest concern at the moment is making it back down the aisle without tripping?

Three months after our wedding, those words manifested in a move to a foreign city in the middle of a very dark winter. Shortly after, a miscarriage morphed into months and then years of trying to have a baby. Maybe it's not meant to be — it's fine, we're okay — and then the "for better" appeared — a baby, a girl!

Soon enough, wow, a second — that was fast! How did that happen?! Life is good — two kids — a girl and a boy — fancy that — who would have thought? Then a diagnosis and the "for worse" comes into play — developmental delays, cognitive and motor impairments, sensory issues.

I soon realized the hardest thing that has ever happened to me was also happening to someone else, someone with an exceptionally kind and patient heart — but who is different than I in many ways. Differences aside, we had to figure out how to carry this thing together without dropping it or breaking it or shattering ourselves in the process. Sometimes we hand it off to each other. Often I am the one diving in — reading the books, meeting the therapists. It's easy to feel like I'm carrying it alone.

But when I need him to be there, he shows up. He cancels meetings and rearranges travel when I can't see one more doctor or therapist alone — when I need someone to witness the raised eyebrows, the somber, apologetic, or brusque tones— he is there.

Even then though I don't always let him off the hook — largely because I am profoundly sad (and exhausted) and it feels the only thing I can do with this sadness is to hand it off to him in the form of anger — anger at him for not being around enough, for having to take off so soon when he does show up, for getting us into this predicament in the first place — because obviously the whole thing is his fault. In those early years a good deal of irrationality entered the picture as we processed the fact that things had turned out so very differently than planned — not that we had planned anything at all.

We had thought we'd get married, have a kid or two or three, and deal with the usual bruises, breaks, scrapes, and stitches. We knew in theory there would be larger things. We all know they're out there, but they don't enter the picture when you're standing on that altar or holding your newborn. You and your husband are so incredibly capable of making this work — of protecting them. Nothing is going to touch them — nothing you won't be able to fix with a glass of water, a band-aid, or maybe a quick trip to the ER. We'll be back on to the "for better" before we know it.

It doesn't work like that. We all know this.

We knew it, too, deep down. We were not new to the world when we made those vows. But maybe that's the beauty of a couple speaking those words in a suspension of disbelief — a willingness to put on hold what you know to be true.

About two years into having kids — shortly after Erin's diagnosis — Bill took to checking in daily to ask: "So what's the crisis of the day?" I never fail to deliver. Some are small — we can't find the pink tie-dye shirt and she refuses to get dressed without it. Some larger, like the other day when she put her fist through a window pane in a post-seizure haze.

That's what makes a special needs marriage — any marriage — work. Understanding and accepting that sometimes it just doesn't. Adapting to a constant redefinition of terms, of words, of good days, and what constitutes a crisis for better and for worse. You have to realize that while you said you'd love this person no matter what, some days there's no love left in the tank.

And that's okay — as long as you hold on to the understanding that you committed to not just words but a process, a work in progress; and that though tomorrow will not be without its chaos and crisis it may very well also hold a for better or two as well.


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