I saw a birthday card the other day that read Growing old ain't for sissies. I think the same goes for marriage when parenting a child with special needs -- probably any marriage -- but our daughter, 15, has an autism spectrum disorder and given the statistics (and the mayhem her three younger brothers bring), many days it's a wonder that we are still together.
When Erin turned thirteen I wanted to hit the pause button. Seeing her body outgrow her mind terrified me. As my marriage approaches its eighteenth year ("almost an adult," a friend noted), a part of me feels the same. We've made it through a fair share of "for better or worse" -- who wants to grow up and see what "sickness and health" lay 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, 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 are 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 muddling through the sh*tstorm with them. Who can know what for better or worse means when you're 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 (ok two) of trying to have a baby. Maybe it's not 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 baby nonetheless and 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. (Turns out that wasn't colic.)
How are we handling this -- I have no idea how I'm handling it -- and then you realize the hardest thing that has ever happened to you is also happening to someone else, someone with an exceptionally kind and patient heart but who is different from you in many ways and, differing approach and perspectives aside, 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 therapists -- it's easy to feel like I'm carrying it alone. And 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 eye brows, 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, for getting us into this predicament in the first place -- because obviously the whole thing is his fault. 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 -- a "family" and deal with the usual stuff, bruises, breaks, scrapes, stitches, sure there would be larger things -- you 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 -- maybe a quick trip to the ER and we'll be on to the "for better" before we know it.
It doesn't work like that. We all know this.
We knew 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 aptly notes, "is essential for a magic act or a circus sideshow act to succeed."
A lot of days our marriage and our family feels a lot like a circus sideshow act -- and more than a little magic -- and sense of humor -- is involved in getting us through. About two years into having kids -- 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. 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.
A few months after we moved back to the States and were staying with my parents, Bill had called several times without an answer. When he arrived home to flames shooting out the kitchen window, 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. Crisis averted.
Bottom line: Maybe 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. 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 -- and regardless of what the "experts" say sometimes there just aren't enough hours in the day not to go to bed angry and unresolved because you know it's a process, a work in progress and that's what you've committed to -- that and the understanding that the next day you just might discover that even if the house burns down you could not be more grateful to find this particular person standing beside you and your circus sideshow, safely on the side of the road.
(Note: A slightly shorter version of this essay ran in The Week on 9/30/16)