DownSyn Forum

Sorry, I didn't mean to imply that we were being 'judgemental moms'.

Perhaps it is best for me to withdraw from this discussion. Apologies if I overstepped a boundary.

It just struck me - are we much more critical of Martha Beck than we were of Kim Edwards because Martha is a mom like us?

I felt a bit grateful to Kim for writing so well about Ds even though she ...

I think it is the journey that is different, not necessarily the children.

And it is different for us as mothers and people when we have a child with a disability.

It makes us re-evaluate wh ...

I'd have a hard time talking about my grief, too. I think it is because it isn't really done. I still lay awake at night and grieve over the societal challenges that Aaron is going to be faced with. ...

I LOVE LOVE LOVE Anne Lamott. She is my favourite writer of all time.

Good taste, ladies.

Anne talks a lot about 'God' and 'Jesus' and even if one isn't a Christian persay (I'm Unitarian)...s ...

I agree that I felt much of the book was too what I term 'woo-woo' - new agey, flakey, whatever you'd like to call it.

I think much of that is due to the 'over the top' stories. Funny how her stor ...

Yes, toddlers are toddlers if they don't toddle. They have the toddler attitude, non?!

Regarding prenatal testing. No, things have not improved. In fact, they are bleaker than ever. With the ne ...

I read Expecting Adam right after Aaron was first diagnosed. There is no other book out there that talks about what it is actually like to have a child with Ds. In my experience, and through visiti ...

Well, I could read 'expecting adam' again...I read it when Aaron was a baby and could certainly read it again.

Since it is one of the very few books that talks about Ds from a mother's perspective. ...

Bummer!

Do you have any other suggestions for a book we can chip away on? Perhaps we can discuss it in January?

I just picked up 'My sister's keeper'...it is three years old, but I have heard ...

Sure, has the book been released yet?

If so, where can us Canadian-types get it from?

Wow, what a fabulous response from Kim Edwards!

It was so well-written that I had to shake my head to remember - oh yeah - this woman WRITES for a living (and it shows).

I wasn't surprised that ...

Ah, there are so many people who have affairs and there is really never a true justified reason to embark on one. I think people do it b/c they don't want to look closely at themselves or their marria ...

Wow, 'love can never be forever thwarted' is such a powerful sentiment.

It is like get your sticky fingers off the control panel, Jennifer! (A nod to Anne Lamott for that quote)...

Love is in ...

Yes, I think David stopped feeling a long time ago. Interesting how he dropped his legal last name - he almost created a person who barely existed.

A man who could give to his patients, but not ...

Yes, that flies in the face of the 'happy all the time' stereotype placed on people with Down syndrome.

I appreciated how Kim Edwards took the time to address some of those stereotypes and portra ...

I think David Henry actually brought upon a huge change in his life and the life of his family - by playing 'God' and deciding if his daughter should live or die (at least in the eyes of his wife - he ...

I didn't realize until the end of the book, when Caroline came forward - that SHE had a responsibility to tell the truth, too.

She was so in awe of Dr. Henry and worried about the consequences of h ...

It was actually that type of scene that made me think this novel could easily be transformed into a film script.

It was a very vivid scene, so I think I could actually see it on film in my head. ...

About the grocery store scene:

This was very real. I remember after my first husband left, going grocery shopping and being totally paralyzed by the amount of choices there were in store. I would ...

I think it depends on the experience of your doc with babies with Ds. Also how many obvious 'markers' your baby has. Aaron wasn't diagnosed until he was a month old. He was totally missed in the ho ...

I wept at the institution part too. But I wasn't thinking how far we have come in year 2006, but how far we have to go.

There are still institutions like this around the world for people with disa ...

I didn't like him. But after he made the initial decision about Phoebe, there was no going back as far as he was concerned.

The thing is - he COULD have told Norah the truth - he COULD have tracke ...

Well, if David is representative of the medical community - he thought someone with Ds should just be THROWN AWAY....by sending her to the institution and by telling his wife she was dead - that was t ...

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 ...

I don't have any twin experience, but I felt throughout the book that Paul was always searching. And when he was running, he was searching for his lost sister.

I could relate to Caroline and her strong advocacy and protective feelings for Phoebe.

I could also relate to Norah in her loveless marriage. She was shouting out for her husband to notice her - h ...

That's a great point - about David looking just on the surface. I think that's why he became a photographer - he only looked at the physical and did not dig deep down.

I don't think the lies justi ...

I think David Henry had a fear of anything that wasn't 'perfect'. This is a common fear with our medical community, even today.

His wife was a perfectly beautiful, and he had all the answers as ...

Well, studies have shown (there's a 2001 one from Wisconsin) that there is no statistical difference in marriage breakups if you have a kid with a disability or not. We are not all doomed in our marr ...

Yes, I agree...I was DYING to know whether the secret was going to be told by David.

It is funny - I didn't think that Caroline was going to come forward with the secret - I thought that David wo ...

Yes, I agree...I was DYING to know whether the secret was going to be told by David.

It is funny - I didn't think that Caroline was going to come forward with the secret - I thought that David wo ...

WOW! That is totally amazing. How did you swing that?!?!?

Jennifer assured me that the book would be gentle with me, and I wouldn't be deeply disturbed or crying my eyes out the entire time (I'm ...

Dr. Pueschel is a special man. He spoke very formally as a pediatrician for a keynote address. Then he appeared at a panel about ethics. He spoke as a dad at the ethics panel (I understand he had a ...

I just returned from Vancouver's three day conference.

I cannot get over the atmosphere. There is something magical about being in a place where so many people either have Down syndrome, or who ...

Guess not. Must only be me!

I'll post when we return in a week. Looks like some good sessions - on family quality of life, ethics, etc...

I have no idea what to expect, although I heard ...

...we fly out to Vancouver on Wednesday.

Anybody else going to the World Down Syndrome Congress this year? It is in Vancouver from August 23-27.

Here is the link for it: http://www.wdsc2006. ...

We have monthly general meetings (kids welcome, childcare provided), once a month parent meetings (no kids, in the evening), social events (Christmas party, Octoberfest) and the Buddy Walk. We also h ...

They are a fun, bouncy band. Very Maritime-ish. Good to polka to!

Thanks so much for that!

We were watching the Canadian hockey coverage that particular night, and totally missed this NBC clip. I've forwarded it to my contacts with Edmonton Down Syndrome Society ...