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How We've Made Our Marriage Work as Special Needs Parents

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Editor's Note

Hi there, this is just a quick note to let you know that you’ve reached one of our older stories here on The Mighty, and it contains some outdated language. We’ve updated our editorial guidelines, and no longer use “special needs” to refer to children or adults with disabilities. “Disabled” is not a bad word, and children with disabilities have human needs, not special needs. You can learn more about the reasons for this change here. We’ve updated our vocabulary, and we hope you will, too.

I saw a birthday card the other day that read “Growing old ain’t for cowards.” I think the same goes for marriage  – probably any marriage – but especially when parenting a child with special needs. Our daughter, 15, has an autism spectrum disorder, and she has three younger brothers who cause mayhem. While we are fortunate to share a deep faith and commitment to each other and to be surrounded by a supportive circle of family and friends, given the statistics on marriage in general, some days it’s a wonder we are still together.

When Erin turned 13, I wanted to hit the pause button. Seeing her growing up so fast while still dealing with the challenges of her disability made me long to stop the clock. As my marriage approaches its 18th year, (“almost an adult,” a friend noted) a part of me feels the same. 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.

Looking back on those two people exchanging vows on a late September afternoon nearly two decades ago, I see how naïve they were. Let’s face it – as all seasoned couples know, when you’re standing before your friends and family making promises, you really have no idea what you are saying. Who the hell can know what “for better or worse” means when your greatest concern at the moment is making it back down the aisle without tripping? They are just words, and you have to say them to make it official and get on with the party.  That’s 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 the s***storm with them.

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 two years of trying to
have a baby.  We thought maybe it wasn’t meant to be – it’s fine, we’re OK – and then the “for better” appeared – a baby, a girl, a little on the “colicky”/doesn’t sleep side but a beautiful baby nonetheless. Then, 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 – developmental delays, cognitive and motor impairments, sensory issues. Turns out that wasn’t colic.

You wonder how you’re handling it, and then you realize the hardest thing you’ve ever faced is also happening to someone else — the person you married. Someone with an exceptionally kind and patient heart, but who is different from you in many ways. You have to figure out how to carry this thing together without dropping it or breaking it or shattering yourselves in the process. Sometimes you hand it off to each other. Often I am the one diving in – reading the books, meeting the specialists – and it’s easy to feel like I’m carrying it alone. It can be easy to go down that rabbit hole and convince yourself that’s the case.

When I need him to be there, though, 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 weight 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.

In those early days, 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 just thought we’d get married, have a kid or two or three and deal with the usual stuff: bruises, breaks, scrapes, stitches. You know other possibilities are out there, but they don’t enter the picture when you’re standing on that altar or holding your newborn. You feel you and your husband are so incredibly capable of making this work – of protecting them – that nothing is going to touch them, or at least nothing you won’t be able to fix with a glass of water, a Band-Aid, or maybe a quick trip to the ER. Then we’ll be on to the “for better” again before we know it.

It doesn’t work like that. We all know this. 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, which Wikipedia notes, is “essential for a magic act or a circus sideshow act to succeed.” Sometimes our marriage and our family feels very much like a circus act, and more than a little magic – and sense of humor — is involved in getting us through our days.

Shortly after Erin’s diagnosis, Bill took to checking in daily with the question: “So what’s the crisis of the day?” I never fail to deliver. Often it’s small – the boys have pinkeye or we can’t find the pink tie-dye shirt and our daughter refuses to get dressed without it. But sometimes it’s something more, like the other day when she put her fist through a window pane in a post-seizure haze.

A few months after we moved back to the States and were staying with my parents, Bill called several times without an answer. When he arrived home to flames shooting out the kitchen window and six fire engines lined up in front, he saw why. I was relieved to see him and to share the day’s catastrophe, and he was happy to find us standing on the sidewalk, safe.

Maybe that’s what makes a special needs marriage, or 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. Realizing that though you said you’d love this person no matter what, some days there’s no love left in the tank, and that’s OK. Regardless of what the “experts” say, sometimes there just aren’t enough hours in the day not to go to bed angry and unresolved. As long as you understand that what you’ve committed to is a process, a work in progress and that this work in progress takes a fair amount of work, understanding and faith, you might discover that even if the house burns down, you could not be more grateful to find this person standing beside you and your circus, safely on the side of the road.

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Originally published: October 19, 2016
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