Thanks for the extensive reply. I understand much more now.
Chuck Norcutt
On 11/27/2012 10:44 AM, SwissPace wrote:
> Hi All,
>
> Thanks for looking and commenting.
>
>
>
>
> The rest of this post is Totally Off Topic and in reply to Chuck's
> comment about Cai
>
>
> Hi Chuck,
>
> Amongst his many issues Cai is missing parts of his nervous system and
> some bits are "wired" wrongly, hence it took a while to find out a that
> he had broken his leg and b where the break was, All indications were
> upper leg or knee yet when we finally worked it out it was the lower leg.
>
> one portion of nerve that we know is missing is the one to his nose and
> as the sense of smell is linked with taste we were never sure, and
> because his vocal chords were paralysed when born he never learnt the
> swallow reflux (imagine how difficult it is to teach that) and has been
> tube fed directly to his stomach since birth so he never properly had
> the chance to associate hunger (if he feels that) with eating.
>
> He has come a very long way since he was born and it is an exciting,
> amazing and sometimes a sad and frustrating journey he chose to take us
> on (going on the theory that kids choose their parents) but I wouldn't
> have changed it .
>
> I posted this in a closed forum on FB recently
>
>
> Cure for Downs Syndrome -
>
> http://www.independent.co.uk/voices/comment/would-i-want-my-daughter-cured-the-dilemma-of-a-father-whose-child-has-downs-syndrome-8329341.html
>
> <http://www.independent.co.uk/voices/comment/would-i-want-my-daughter-cured-the-dilemma-of-a-father-whose-child-has-downs-syndrome-8329341.html>
>
> I feel the same as the father as he states here although he is
> obviously referring to Downs Syndrome and its symptoms and not
>
> "You might think so; but in a recent survey of Canadian
> parents with Down’s Syndrome children, 27 per cent said that
> if there were a “cure” for their offspring’s condition, they
> would not use it. A further 32 per cent said they were unsure
> if they would take advantage of it. This result was described
> as “surprising” by The New York Times; but it is not really
> surprising at all. My 17-year-old younger daughter, who has
> the condition, is what she is; and that is the person her
> parents and sister know and love. If she were genetically
> re-engineered, would she be the same person? She would
> certainly be very different; with the ability to count or read
> a clock, possibly even to penetrate the secrets of calculus:
> but those are not the sort of attributes which define what we
> love in those to whom we are closest."
>
> but wonder if that is selfish of me and would Cai feel the
> same which only he can answer.
>
> and here are some comments made by other Charge parents.
>
> I cut off the bulk of this comment as it was mainly a quote from a blog,
>
> Facebook person A
>
> #
> And then I thought: People become attached to their children with
> whatever their flaws are. I'm attached to my children with whatever
> flaws they have. And if some glorious angel broke through the living
> room ceiling and offered to exchange them for other, better children,
> I'd cling to my kids and pray away this specter. We all love flawed
> children, and the general assumption that these more extreme flaws make
> the children somehow unlovable, it wasn't true to most of my experience."
> http://www.npr.org/2012/11/12/164958401/parenting-a-child-whos-fallen-far-from-the-tree
>
> <http://www.facebook.com/groups/379660102089572/permalink/423142071074708/?comment_id=423331551055760&offset=0&total_comments=4><http://www.facebook.com/groups/379660102089572/#>
>
> Facebook Person B
>
> #
>
>
> #
> I thought the above quote from an interview with Andrew Solomon, the
> author of "Far from the Tree" might be useful here. What the mother
> articulates so well in this passage is something I very much felt when
> our son with CHARGE was about a year old. <3
>
> Me :-)
>
> #
> Ian Wilcox <http://www.facebook.com/ian.wilcox>I feel that too but
> thought it was just stockholm syndrome ;-) :-)
> #
>
> <http://www.facebook.com/groups/379660102089572/permalink/423142071074708/?comment_id=423500544372194&offset=0&total_comments=4><http://www.facebook.com/browse/likes?id=423500544372194>
>
>
>
>
> Thanks for heads up I will investigate the slideshow
>
>
>
> On 27/11/2012 14:16, Chuck Norcutt wrote:
>> I loved the "lone tree" and the "stalking leaf". Also, I obviously have
>> a very incomplete knowledge of Cai's condition if a sense of taste and
>> feeling hunger are concerns. I can understand your joy that he's eating
>> well.
>>
>>
>>
>>
>>
>>
>
--
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