This week is tube feeding awareness week 10th - 14th February.
I know, every week seems to be an awareness week for something, it even seems that some awareness weeks overlap one another, unfortunately this probably causes the opposite of the desired effect as people take less notice of one awareness week in a sea of many.
However, the awareness of tube feeding (or at least the tube itself) can often be rather abrupt for many people.
Our Lydia is 4 years old and still has an NJ tube which is on her face and goes in through her nostril, she is much older and has had this type of tube much longer than most children who have an ongoing condition that requires tube feeding.
Usually she, as with most children with these conditions, should have had a tube surgically inserted into her torso - a surgery that we are waiting for, would be better for Lydia and which makes tube feeding a little more inconspicuous too.
This is why we often see people made abruptly aware of her feeding tube as it's right there on her face.
Sometimes people stare, sometimes they have an initial look of shock followed by the laser stare in any direction but ours and then there is the absolute horror of people when the children they are with tilt their head and say...... what’s that tube thing?
Amazingly the best reaction is generally that of the children - asking an honest question.
Does it affect me?
If we're honest, that seems to be where genuine awareness begins or ends, people only REALLY care if it affects them.
With tube feeding this is often the abrupt introduction people have to it.
There are so many illnesses and difficulties that can require somebody to use a tube despite never having had any struggle of this nature in the past.
So, the reality that anybody at any time could have an NG tube fitted on a hospital admission means they could learn about tubes having seen one on their loved ones or having had one themselves for a short time.
Some people have these tubes all their life, through their nose, through their belly, going into their stomach or even going just beyond the stomach.
They help with feeding or sometimes they're even just fitted to help drain your stomach and if people were more aware of them, not only would it help people like us - so we don't have to deal with the reactions but it would also help people when in the future if they or someone they love need one they won’t panic.
Is it that big a deal?
Well, in a way yes. It is vital to my little one as it’s her lifeline, it’s how she feeds but, in another way, no.
We don't really notice it anymore, we notice more when (for short periods) she doesn’t have the tube in much like the effect of a pair of glasses.
When I see people with the look of absolute shock on their faces I often think - that's what I must look like when I see people with those daft wireless earphones that look like the head of an electric toothbrush.
I honestly think that there are many more silly looking accessories that people choose to attach to their face of other places than a simple and useful tube.
It's not because she has cancer
There have been many misconceptions when it comes to the tube but this is probably the one we hear most often.
Of course feeding tubes are used by some patients when they are fighting cancer but they are used for such a broad spectrum of reasons/issues.
This goes back to the "does it affect me" portion. Cancer of course is a huge fight and therefore affects so many more people, which means there are so many more adverts and more charitable giving goes to cancer charity than any other charity type.
Basically we’ve all been impacted by cancer, either directly or through one of our loved ones - hence we're all aware of it and motivated to know more and do more.
That is all wonderful but there is still a little bit of the selfish - if it affects me then I care about it approach.
Some take home points
1. Tube feeding isn’t that weird; we're made up of all sorts of tubes anyway.
2. Ask questions, we actually appreciate how honest and inquisitive your children are.
3. Enjoy food, in a world where we're all becoming afraid of what we eat, take time to realise just how much you would miss it. It is a heart-breaking change giving up on feeding your children in a conventional way and really makes you consider what’s important (The "breast is best" arguments etc become almost pathetic) so just enjoy what you can enjoy and be aware that many don't have the same blessing.
Feeding tubes are a great and very important help, even if none of us really want one. The only choice we have is to own it!
Keep going you Tubies out there.