BlueHadeda
SAHM to 4 precious kids
- Joined
- May 18, 2011
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I'm late onto this conversation, but just had to add that I also feel like you ladies!!
My daughter had the mildest form of neural tube defect. Like the very, very, very mildest. Only 1 in millions get that form. My best/only support base for it, was people with Spina Bifida. Some of them with the worst possible forms. And to no fault of them (they're the best bunch of ppl ever), I also felt like my daughter's dissability just isn't bad enough! Even one doctor said that my daughter's foot problems isn't disabling enough, so it's impossible for her to have an occult tethered cord. Well, turned out she did indeed have an occult tethered cord. Why couldn't we just be grateful her feet aren't as badly affected as it could've been?
Worse is, I thought those days are over. Now, some of the specialists actually suspect she has a chromosome defect. And at least twice, some other doctors we saw for various reasons, replied to this news by saying "oh, but her facial features aren't bad enough to be 22q11.2 deletion syndrome". Urgh!! Here we go again.
Do people really think we make these things up for attention or because we want our kids to have these dissabilities?
My daughter had the mildest form of neural tube defect. Like the very, very, very mildest. Only 1 in millions get that form. My best/only support base for it, was people with Spina Bifida. Some of them with the worst possible forms. And to no fault of them (they're the best bunch of ppl ever), I also felt like my daughter's dissability just isn't bad enough! Even one doctor said that my daughter's foot problems isn't disabling enough, so it's impossible for her to have an occult tethered cord. Well, turned out she did indeed have an occult tethered cord. Why couldn't we just be grateful her feet aren't as badly affected as it could've been?
Worse is, I thought those days are over. Now, some of the specialists actually suspect she has a chromosome defect. And at least twice, some other doctors we saw for various reasons, replied to this news by saying "oh, but her facial features aren't bad enough to be 22q11.2 deletion syndrome". Urgh!! Here we go again.
Do people really think we make these things up for attention or because we want our kids to have these dissabilities?
