Writing about raising a child with a rare, life-shortening disease
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My latest work is around the resilience required to face a diagnosis and the how of coping.  Any others out there trying to write this?

  • I'm writing a memoir about raising my daughter who was born with a life-threatening congenital heart defect. It has been rather cathartic for me. 

  • While what I'm writing isn't exactly the same, I am writing about my experience unraveling my own daughter's medical mystery, although it is one which we don't think will shorten her life. It is terribly hard to write about well -- so much emotion goes into it. Are you blogging about it or working offline?

  • Thank you Tracy.  
    Interestingly enough, my second book (which sits in a box waiting for this manuscript to get out of its way) is about my ten months spent bedside as a forty-something man died of pancreatic cancer.  Loss and grief are very much my writing themes. 
    Could I read your chapter somehow now?
    Congratulations on your forthcoming publication by Putnam!! I look forward to reading your work. 

    I looked at Jessica Handler’s page.  Her books look like I should be reading them!


  • Patti, Becoming, the last chapter of my forthcoming memoir (Putnam, '15) is partly about illness, death, and coping re: the death of my father-in-law, for whom we were the primary caregivers, but this seems quite different in some fundamental ways from what you're both writing about. Just wanted to let you both know that my thoughts and best wishes are with you as you continue on your incredibly courageous journeys both just to face day to day life and to write about it.

    All my very best to you,


  • let me help, or rather, let's help each other. Our timing and process stage is quite similar.  shoot me a note at my email or send me yours. I would love to know more about the conditions you are writing on. 

  • I am writing! Also a memoir- also about the condition. Well, a couple of conditions. I've just picked up my draft after a three month hiatus for my next re-write. It's my first memoir, so I'm a bit lost in the process. That said, I think it's going well. I've got four beta readers/editors picking it up starting this week, actually, so hopefully that will get me going on it again quickly.

    My husband is remarkably well! He got into an experimental trial that worked wonders for him- they poisoned him with arsenic to get the other chemo and radiation into his brain. I guess it worked- March will be the five year anniversary of his treatment's end. He was given eighteen months to live in July '07, and here we are. :)

  • Hi there.

    Thank you for the reply. I drafted the bulk of the book and sent it for a read through with a rather amazing editor. I was thrilled to receive the 18 pages of comments and figured it would be another solid six months of work but I find myself daunted just now and considering shelving it.  My memory of the last four years is cloudy at best and I'm feeling done with it all. Which, by the way, goes against everything I preach about in my memoir coaching business!! 

    My son was diagnosed four years ago, so we are well into our odyssey.

    Tell me about you? Are you writing? How is your husband and family? If you prefer private email I am at [email protected]

  • Not exactly. I'm writing about my husband's terminal brain cancer, but it's definitely not the same. Still trying to convey the need to keep the fear and uncertainty on lockdown. How are you doing? Both with writing, and the condition?