(Feel free just to skip to the third and final video of my interview at the end of this post.)
Within two or three months of Pearlsky’s birth we were clearly told that marriages with kids like her just don’t stay together. Many people told us this, the pediatrician, other doctors, even clergy and friends. Of course we did not believe it, not us, we were highly educated, in love, we could deal. (SPOILER ALERT: My nom de plume is Single Dad for a reason.)
I don’t know of any good, solid marriages that include a child like ours. Granted, I don’t know of all that many good and solid marriages that don’t include a severely disabled child, but I digress.
Why do our marriages suck and/or fail?
There are many reasons, but I think a primary one has to do with the fact that we come to the situation with no experience, no basis of reality. How many of us have previously had a severely disabled child? Or even grew up along side one? Both spouses are thrown into a situation they have never been in before, a life-changing monumental situation. And neither have any direct (nor typically indirect) experience or knowledge about it. So with the totality of your experience up to this point in time, you are thrown into the world of severe disability. There are no books, manuals, game plans, let’s face it, they are all bullshit when it comes to this. What happens is that you both naturally handle things differently, neither with experience, and let’s face it, neither knowing what the fuck you are doing.
One may do more research, you may research together. But research what? What do you really learn from blogs? And how many blogs really pertain in any way? (I know a great blog, by the way … )
Often one spouse becomes more of a caretaker than the other. One spouse dedicates more time than one would to a “normal” child, and that takes typical time away from the other spouse. Or one becomes overly controlling, needing to control everything that happens to and with the child, to the point of abusing the other spouse with bizarre demands even if they are centered around the child (a post for another time). Or denial, burying one’s self in work or other activities so as not to have to deal with the child. Or one becomes so enwrapped in the total care of the child that all else is left to flounder. In all these cases, we handle the situation differently than our spouse does. And inevitably our spouse is doing it “wrong.” Then comes the resentment, guilt, anger, controlling abuse, disappointments, and more. Oh, did I say love? Partnership? Cooperation?
Whatever the reason, our marriages fail. Or, at the very least, are not what we imagined, what we hoped for, what we want.
Part 3 of the 3 part interview … (this one even has a happy ending)