kiwibird27
02-10-2006, 09:04
PLEASE DON'T GET OFFENDED LADIES..........................
I have read with interest alot of other posts about how they feel there child is segregated or ignored because they are not as disabled as many of the children attending local SEDU's etc.
My daughter looks "Normal" as well and few people would realise there is something wrong, the nasal gastric tube is the only give away. They don't realise when she gets a cold she goes into liver failure or that she needs weekly blood tests and 3 weekly blood infusions to keep her alive, or that she has a very rare genetic disorder........ etc etc etc
We have been in hospital for the last 3 months and am always drawn to the people with children that have similar conditions and who understand what its like to watch your child come close to death, or to have a condition so rare no one can predict what will happen to your child, it's really hard, but they are the only people who understand.
I will be drawn to the same people in the community and find parents with children with conditions that are common, have a piece of paper that explains what will happen, have support groups where children with the same disorder meet, have access to all the services they need as they have a common label that everyone understands.
No one else know what I am going thru except people with rare disorders who fight for answers everyday, so I am sorry if i am one of those mothers who doesn't pay alot of attention to you, I don't mean to offend, I'm just jealous that my child hasn't got a common disorder with a list of things to do and a medication to take, I am just searching for answers to questions that don't exist.
I hope that kind of explains what it's like????
I have read with interest alot of other posts about how they feel there child is segregated or ignored because they are not as disabled as many of the children attending local SEDU's etc.
My daughter looks "Normal" as well and few people would realise there is something wrong, the nasal gastric tube is the only give away. They don't realise when she gets a cold she goes into liver failure or that she needs weekly blood tests and 3 weekly blood infusions to keep her alive, or that she has a very rare genetic disorder........ etc etc etc
We have been in hospital for the last 3 months and am always drawn to the people with children that have similar conditions and who understand what its like to watch your child come close to death, or to have a condition so rare no one can predict what will happen to your child, it's really hard, but they are the only people who understand.
I will be drawn to the same people in the community and find parents with children with conditions that are common, have a piece of paper that explains what will happen, have support groups where children with the same disorder meet, have access to all the services they need as they have a common label that everyone understands.
No one else know what I am going thru except people with rare disorders who fight for answers everyday, so I am sorry if i am one of those mothers who doesn't pay alot of attention to you, I don't mean to offend, I'm just jealous that my child hasn't got a common disorder with a list of things to do and a medication to take, I am just searching for answers to questions that don't exist.
I hope that kind of explains what it's like????