photo by Nell Mednick

About Survivor Mom

I am the surviving, 75 year-old mother of Peter Weisman who died of Duchenne muscular dystrophy in 1980. I wrote a book called Intensive Care: A Family Love Story about the experience. The book is about how a family struggles and often thrives, even under the constant threat of death. This blog is my cyber-sequel. From a survivor's vantage point, I'm going to blog, in honest detail, about how life was then, and how it is now. Expect to feel better.

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Can this Marriage be Saved?

Nov 09, 2012

Having a boy with DMD can destroy a marriage. The odds of failure for “normal” couples are 50 percent. For the parents of a severely handicapped child, you’re looking at 75 percent. We almost joined the majority several times. The argument took various forms, but it was always about who had it worse.
Me: I want you to share more of the responsibility for caring for Pete.

Him: I spend a lot of time with Peter. I bathe him, a play games with him, we go on walks.

Me: That’s true.

Him: “I cook. I unload the dishwasher. I help a lot. What do you want from me?

ME: I want more. This isn’t your normal husband-wife set up. I don’t want a helper; I want a partner. What do you think I’m doing all day? I’m the one who gets the kids ready for school, I’m the one who makes breakfast and sees them off on the school bus, then goes to work, races Peter’s school bus home, helps him with his homework, makes dinner, and gets him ready for bed. You help.

HIM – But you don’t work under the same pressures as I do. I’ve got people bugging me non-stop. I work my ass off at the office all day, and when I finally get home – guess what? – I’ve got a whole other job to do. I don’t know what more you want from me.

ME – You could get up in the middle of the night to piss and turn him.

HIM: “You know I sleep soundly. I’ll be glad to get up with him, just wake me up.

ME: “Don’t you get it? I’m already awake. What’s the point of waking you up? Believe me, if I weren’t here, you’d wake up just fine. You don’t wake up because you know I will.”

HIM: “I can’t have a conversation with you when you’re so upset.”

ME: “This isn’t a conversation, Mister Works his Ass Off. This is a knock down drag out fight.

If any of the above sounds familiar, welcome to the club.