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.

.(JavaScript must be enabled to view this email address)

« back to Survivor Mom

Good-bye: An open letter

Jun 06, 2014

Good-bye: An open letter to parents, relatives, and friends of boys with Duchenne Muscular Dystrophy.

When I started writing “Survivor Mom” almost two years ago, I had an urge to deliver a message to you from my perspective which, since our son Peter died 34 years ago, is a wide one. From where I stand, I could confirm to you, who are in the midst of dealing with this insidious disease, that there is life and love and happiness after Duchenne. There is also grief. And relief. But most of all, I wanted to convince you that what counts most is not how long, but how well.

I’ve been writing the blog for almost two years. During that time I have “friended” and been “friended” by a lot of people. I love reading about your lives. I know just how you feel when you write how much you love him, how wonderfully upbeat, and funny and courageous he is. I know just how you feel when you don’t think you can face his loss. And when you must face his loss.

I thank everyone who “liked” and “commented.” I’m particularly grateful to those who helped me write the blogs by responding to my calls for comments on a variety of issues, among them abortion, social isolation, or what to say about death, or how to deal with sibling rivalry.
I’m quitting the blog for the best of reasons: I’ve said all that I have to say. I have no fresh, modern experiences to share. My news is old news. There are parents writing today who have more relevant comments to make. Yours is an activist generation. Your faces are turned hopefully toward a cure.

I’m going to keep “Survivor Mom” on my website. Even if you’ve read it before, you might want to visit the site for a booster shot. If you’re in despair, “Survivor Mom” will give you permission to close the bathroom door, get into the shower, turn the faucet on full blast, and scream.

Although I won’t be writing “Survivor Mom,” any more, I’m happy to continue our conversation. You’ll find me at www.marylouweisman.com. My email address is there, too.