Hi S - Very brave of you to say this. I've been feeling really low about Chrissy's situation recently. The flawed bureaucratic processes we've continually come up against have brought me to my knees & it's hard to see any light on that front. Like Clementine, Chrissy's life has been severely affected & she has suffered far too much, & it's like ripples on a pond affecting the wider family. Her amazing personality means that we feel blessed to have her, but what's life like for Chrissy? I'm terrified too of what will happen to her if she outlives us but equally terrified of losing her too soon because of her condition. Then if you look at the wider picture, & all the unaffected or very mildly affected parents/grandparents etc you see that this deletion is just part of life's genetic lottery. None of us come into the world with guarantees.
Tuesday, 21 August 2012
To test or not to test for genetic abnormalities?
Hi S - Very brave of you to say this. I've been feeling really low about Chrissy's situation recently. The flawed bureaucratic processes we've continually come up against have brought me to my knees & it's hard to see any light on that front. Like Clementine, Chrissy's life has been severely affected & she has suffered far too much, & it's like ripples on a pond affecting the wider family. Her amazing personality means that we feel blessed to have her, but what's life like for Chrissy? I'm terrified too of what will happen to her if she outlives us but equally terrified of losing her too soon because of her condition. Then if you look at the wider picture, & all the unaffected or very mildly affected parents/grandparents etc you see that this deletion is just part of life's genetic lottery. None of us come into the world with guarantees.
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