Marriage is a wonderful institution, but who wants to live in an institution? ~Groucho Marx
(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)
Discussions on dating, terminating, and living.
Apparently you were around for my marriage:) You nailed it and I’m glad to know that I’m not the only one because for years I felt like a failure, that there was something very wrong with me. Looking back now I can see how exhausted I was. Yesterday the big guy and I spent five hours with Miss Katie, longest time he has ever spent with her. By the end of the day both of us were exhausted and I reminded him that I did that everyday, for years. I don’t know how.
You are one fascinating human being.
But you know I have always thought that. MAN-CRUSH!!!!
I have no idea, NONE, why my marriage is still going. Is it strong? Is it thriving? I don’t know. Sometimes it does. Sometimes it does not. We have discussed divorce at times, we have discussed being together for the long haul at times. It is the strangest fuggin’ thing I have ever been through.
But you nail it…there is no guide or manual, you just do it and make it up as you go. I think, and this is just a theory, that we have come to a realization that our LIFE is kind of shitty and difficult, not our marriage. Our marriage is just a part of THIS LIFE that was sent off the tracks by what happened to the boy. As long as we can keep that in our heads, maybe we’ll be OK.
Interview? Super cool. When does the DVD come out? When your voice gets tinny about halfway through in part 3, near the part where you are saying you don’t really have male friends (sniff)…what happened?
You inspired me here, brother…especially the part about advocacy. I need to do something like that…or at least do SOMETHING period. I am not doing enough. I need to stop running. Hiding, which is what I have been doing too much of lately.
I don’t think I believe in God or fate, but for some reason…something was on my mind, and here comes this post, by you, addressing some key things floating in my brain. It CANNOT be coincidence that you decided to put up that video, mention me by name, using that particular phrase, while I was working on a post called The Running Man because of the fact that you had posted over there prompting me to write.
I mean…c’mon…the chances? SUPER CREEPY. Cue X-Files music….
PS 1…The right to do dumb things coming along with the right to do stupid things? Great statement.
PS 2…If you had it to do over again would you do it this way or (What I call The Terminator Scenario)? And you said you WOULD do it the same. I have such respect for that. One of these days I have to tell you about what I used to do to get to sleep, and why I can’t do it anymore. And NO…it ain’t that (jeez…dirty minds…).
I watched the videos and enjoyed them. I found you to be open, honest and straight forward. I really respect that. I have not walked in your shoes and have absolutely no right to judge. As adults we must make the best choices for OURSELVES and OUR families. I feel what you have to share is very helpful to others. You tell the TRUTH, YOUR truth and that is to be admired NOT criticized and analyzed. And, just FYI, I think you are a phenomenal father!