Sunday, 27 September 2009

Is Tube Feeding a Sin ?

 I have a 4 year old girl who is fed through a nasogastric tube.
A Nasogastric tube is a tube inserted through the nose which goes down through the esophegus and into the stomach. This tube is her lifeline, all the nutrients she needs is given to her via this tube.

We try to treat the family with a sense of normality and do everything a normal family do, the tube is not something that holds us back. We go out for meals like any normal family and take our girls feed with us, yes she has her feed as we have our dinner.

The looks we get during our dinner can sometimes be hilarious, people trying not to look or appearing to try not to look. I know it can look funny and peopledo not understand what the tube is for but I would just prefer people to ask than just stare.

As our daughter has medical needs we began cruising as our holiday, this makes it easier for us as the amount of medication and feeding apparatus it is impossible for us to fly. We alsoneed to ensure that all the feeding and medical apparatus needs to be carried on as we cannot trust anyone with this equipment just in case.
As we cruise regularly my wife often looks at forums on different cruises, she was appalled by a comment left on one forum where a userleft this comment " We arranged for an early seating for lunch, when we arrived the first evening we were embarased when a child was fed via a tube through their nose. We were lucky enough to rearrange our seating time to the later sitting to avoid any further embarrassment"

Although this was not our child being talked about it brought a shiver to our spine. Our child is now an embarrassment just for having medical needs ?

We are used to the strange looks but to have a child called an embarrassment is totally annoying.
Our child is normal, she needs special care and attention but this does not make her an embarrassment. She is a beautiful girl who brings countless joy to our life.
If you cannot handle this then YOU are the embarrassment.

If you see a family with a child who has special needs no matter what they are then either go on your merry way without staring or speak to the parents/child. They will usually be happy to explain the problem and chat to you.
If you are embarrassed by anyone who has special needs then it is you who has a problem not them.


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