This past weekend W5 aired a one year follow-up about parents raising triplets with severe cerebral palsy. Not surprisingly the parents described a life overwhelmed with caregiving responsibilities and medical traumas. The parents had also spearheaded a successful charity which is noteworthy and deserves mention. Threetobe has raised thousands of dollars for stem-cell research geared to addressing neurological impairments.
Unfortunately the segment also shared that one year after the original story aired the parents of the triplets had split. The interviewer, with appropriate dramatic flair, asked the mother if any marriage could possibly survive the caregiving demands with which they lived. I was relieved when the mother replied that many marriages survive, her’s didn’t.
There is this pervasive myth that raising a child with severe disabilities increases a couple’s risk of divorce when the truth is that among parents with children with disabilities the rate of divorce is no different than that of the normal population. Let’s not get too excited here. That means that half of all these “special needs” marriages will end in divorce. Marriage, it seems, is a flip of the coin. This first myth about “special needs” marriage is countered with a second myth, that if your marriage has survived it must be somehow extraordinary. Ah, yes. It didn’t take us long to get back to the saints and superheroes narrative. And like many of the myths that describe our extreme caregiving journey, this one isn’t particularly helpful.
As an aside my husband has just walked by and read this post thus far. He advised me that I should probably let the secret out. He actually IS a superhero which is probably why our marriage has survived. But I digress.
Marriage is hard work. Like really, really hard work. Those of us raising special needs kids don’t own the story rights to difficult journeys. Life has a habit of throwing all sorts of curveballs at us that throw all those wonderful fairy-tale like plans we start out with into total disarray. Illness, disability, job loss, financial hardship, mental illness, death, isolation, abuse, infidelity or even just the fact that people and goals can change over time – all those can strain and break even the best relationships. Life is hard and one of the things I heave learned during my own journey is that most of us live through some pretty difficult stuff that can stress any marriage to its core. I am not convinced those of us with special needs kids are a whole lot different. Blaming kids is never a good idea. The challenges with which we live are probably just more visible to the general public giving lots of fodder for the construction of these pervasive, and not particularly helpful, myths.
About two years ago I was at a conference dealing with childhood disability. At one point the speaker cited the statistic that “special needs” marriages end at roughly the same rate as all other marriages. One parent in the audience became quite upset by this idea. He believed that citing this statistic negated the extraordinarily hard work that had been necessary to keep his marriage intact. For him, the myth was important because it made the survival of his marriage both unlikely and unique. But for me this parent completely missed the point. Keeping any marriage intact is extraordinarily hard work. As extreme caregivers there is no doubt our lives are very difficult. I am brutally clear on that point. But we are not the only people familiar with lost dreams, difficulty, tragedy, and so on. We are not the only people who have had to work very hard to keep our marriages intact, or who have had to live with the profound loss of divorce when that hard work wasn’t enough.
Ultimately my point in all of this is, like the mom on W5 said, some marriages survive life’s challenges regardless of those challenges, and some do not. Judgement and unhelpful narratives really cloud the issue. Very good people who worked hard at their relationship get divorced, and very average people remain married. Dooming a marriage because it involves parenting a special needs child (or three!) is not helpful. Neither is creating a narrative that suggests that any marriage that survives extreme caregiving is somehow unique and extraordinary. Fairy-tales and myths about life and marriage are not helpful. Let’s get real.