kiwibird27
21-07-2007, 21:57
Okay we are going back 1 1/2 months now and my dd has ripped her feeding tube out and while we wait for surgery she has a Nasal Gastric tube to feed her through. It's a bright yellow tube coming out of her nose taped to her face with brown tape. Not very fetching but I am REALLY REALLY used to it!!!
I pop her in the stroller and head to my local shops and honestly think nothing of it. DD's tube is usually hidden from sight and people usually stop and say hello to her cause she is smiley!!!
I get 2 blocks into my journey and she people making that pity look at me.................it doen't click, I hear people telling their children to shhhhhhhh shhhhhhhhh, it still doesn't click, everyone stares at the stroller and runs in the other direction, people look sad, not just one or 2 but everyone avoids eye contact........ I still don't click on (I must of been a bit slow that day) Then one woman comes up to me and says "It's so sad.... so sad" "SORRY?" I say " What do you mean?" Then I look at DD and suddenly realise people can see her tube in her nose, she is still smiling, laughing and playing but people are really upset at looking at her.
I explain she has a genetic disorder and is tube fed and just get :"It's so sad" responses from her so eventually say " Well she looks pretty happy and it's better than being dead I guess" and walk off. ( probably shouldn't of said that but enough was enough,
My DD is a happy, confident, disabled child, I am a happy confident disabled child's mother, I am glad she is happy and not seriously ill like I have seen her, I realised then that I had hardened in a way to other peoples feelings. All i see is my beautiful happy, tube fed daughter, so I apologise if it was you I snapped at!!!!! She now has a new shiny stomach tube that can be hidden so hopefully people can get back to smiling at her
I know there are tube feeders out there, that was a story just for you!!!!!
I pop her in the stroller and head to my local shops and honestly think nothing of it. DD's tube is usually hidden from sight and people usually stop and say hello to her cause she is smiley!!!
I get 2 blocks into my journey and she people making that pity look at me.................it doen't click, I hear people telling their children to shhhhhhhh shhhhhhhhh, it still doesn't click, everyone stares at the stroller and runs in the other direction, people look sad, not just one or 2 but everyone avoids eye contact........ I still don't click on (I must of been a bit slow that day) Then one woman comes up to me and says "It's so sad.... so sad" "SORRY?" I say " What do you mean?" Then I look at DD and suddenly realise people can see her tube in her nose, she is still smiling, laughing and playing but people are really upset at looking at her.
I explain she has a genetic disorder and is tube fed and just get :"It's so sad" responses from her so eventually say " Well she looks pretty happy and it's better than being dead I guess" and walk off. ( probably shouldn't of said that but enough was enough,
My DD is a happy, confident, disabled child, I am a happy confident disabled child's mother, I am glad she is happy and not seriously ill like I have seen her, I realised then that I had hardened in a way to other peoples feelings. All i see is my beautiful happy, tube fed daughter, so I apologise if it was you I snapped at!!!!! She now has a new shiny stomach tube that can be hidden so hopefully people can get back to smiling at her
I know there are tube feeders out there, that was a story just for you!!!!!