DownSyn Forum

jennifergg · Last edited by jennifergg on January 20 2007, 2:08 PM; edited 1 time in total

Many people are concerned that having a baby or child or person in your family with Down syndrome will cause suffering, and that there will be a poor quality of life. That, in fact, is David Henry's purported motive for telling his wife their baby daughter died.

There are many people suffering in this book, and there are many people with a questionable quality of life, but I wouldn't say Phoebe is one of them. That is one of the things that I love about this book, and an element that we all, on this forum, know to be true firsthand!

I am wondering about who is suffering, and why, and what things we can learn from these characters.

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Jennifer Graf Groneberg

Suz · Posted: October 19 2006, 5:35 PM Post subject:

The whole Henry family suffered WITHOUT Phoebe. That is the irony of the story.

Norah also grieved and suffered for the death of a daughter when she didn't have to. It was all needless.

I think Caroline was suffering for love BEFORE she took Phoebe and raised her as a daughter. Her suffering disappeared when Phoebe came into her life.

jooniper · Posted: October 19 2006, 5:42 PM Post subject:

My husband and I were just talking about this idea upstairs a minute ago. The whole premise that what we consider "normal" is the desired way to be. But obviously, Phoebe did not suffer in the book, and I didn't see her causing anyone else to suffer. She only brought joy. I agree that the family sufferred by excluding Phoebe in their lives. When I first had Polly, my reading and writing focus was about sufferring. I was certain that having a child with Down syndrome would be my "cross to bear". But any suffering I've had so far on this journey has been self-inflicted, or put upon me by the culture surrounding me. I don't believe that Polly will ever make me suffer. I'm good enough at doing that to myself.

_________________
Gillian
wife to Sergei and mom to Elaina ( Cool

, Zoya (6) and Polina (2 1/2 DS)
http://lintofpocket.wordpress.com/

jennifergg · Posted: October 20 2006, 9:22 AM Post subject:

I have come to think of "normal" as a beast akin to a unicorn...everyone thinks they know what it is, everyone talks about it as if it were real, and yet, no one has ever actually seen it.

When Avery was dx, I really wanted to paint the house purple. (My husband talked me out of it, he thought I was crazy. ) What I was wanting, it turns out, wasn't a purple house, exactly, but a way to say "I embrace the not-normal" in a big way. I still have a beige house, but I try to embrace the not-normal in smaller ways, everyday. There's a lot to embrace!!!

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Jennifer Graf Groneberg

queenk · Posted: October 20 2006, 4:42 PM Post subject:

Very astute comments, jooniper. I was talking about this with a friend just the other day--that my suffering regarding Thomas's dx was, for the most part, rooted in a false reality. The situation is only sad if I continue to believe the lies I've been steeped in regarding what makes life good, what makes a person valuable, etc. Once those falsehoods have been discovered and rejected, there's nothing to be sad about.

In fact, more and more I'm convinced that the majority of human suffering has a similar cause: a lack of understanding of truth.

_________________
Kathryn Lynard Soper
Mother of Thomas (DS) 10/2005
Sam - 2003
Matt - 2001
Christine - 1999
Andrew - 1997
Ben - 1994
Elizabeth - 1993

Author of The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery

Editor of GIFTS and GIFTS 2