I know it’s not your fault, but it’s basically your fault: surviving a marriage when you’re a special needs parent

Ella Joynes

I’m sitting here writing this on the eve of my 12th wedding anniversary, which seems like a super convenient way to introduce the world to my marriage and my family.

You see, my husband M and I have been together since we were 18, and holy fuck that means that we’ve been together almost half our lives. Soon I will have been with him longer than I haven’t been with him, and once you reach that tipping point, well… you might as well stick it out for a bit longer I suppose. Shame to put all that hard work to waste.

Anyway, who would have known that when we were but two doe-eyed teenagers, that one day we would have four kids (I know, I know… say no more: we’re well aware of what having a large family does to people’s eyebrows), and that one of them would have profound special needs? I’m sure you’ve heard it before, but I’m here to tell you very loudly and very clearly, using gesticulating hands and some eyebrow gymnastics of my own, that having a child with a disability affects every single facet of your relationship, and tests your communication skills to their absolute limit.

I posted on Facebook recently that I’m convinced the only reason M and I have lasted this long, is because he will eat the caramel chocolates from the fancy box and I will eat the fruit creams. Aside from the pushback I received from friends who think fruit creams are terrible (they’re so very wrong about this; adorable, but wrong), it did create a rather fantastic metaphor for exactly how and, more importantly, WHY our marriage is working.

Special-needs parenting is an extraordinary test of a relationship. It takes some courage to admit that, but it just isn’t easy. It’s a hard slog to raise our eldest son, and while I love him to the ends of the earth, will do anything for him and our other children, and aim to be the best parent I can to him, his presence in our family is a challenge like no other. His behavior, medical needs, physical impairments, and daily routines, cause us immense heartache and complete exhaustion. You have to trust your partner implicitly to do the things they say they’ll do, be the places they say they’ll be, and put in the demanded effort they say they will. Otherwise nothing would get done and your marriage would immediately crumble under resentment and frustration.

That’s asking a lot of someone. It really is.

So how do we personally make it work? Well, in amongst the good days and the bad days are the mundane days. And on those days, we agree that he’ll take the caramels and I’ll take the fruit creams, and we’ll divide and conquer the shit out of this special needs parenting gig until the whole day is done. And then we’ll get up again tomorrow and do it all over again with a completely new set of chocolates. And it won’t be easy and it will probably involve at least one person asking if that smear on their shirt is chocolate or poop… but we’ll get it done. And as we’re doing it, we’ll thank the stars above that we have each other to do it with.

(I’m still stealing all the truffles though. I said I was good at my marriage – not perfect.)

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