Monday, 11 February 2013
Today marks the start of Feeding Tube Awareness Week.
There are many different reasons why children and adults need feeding tubes, not always the ones you might imagine either. There are those who can't eat, and those who can't absorb enough nutrition even though they appear to eat well. Those who won't eat, because you cannot imagine the fear involved in eating if you know swallowing could cause you pain, stop you breathing, stop bowel function - association is very powerful. There are also those who can eat and must not, for whom the switch can be painful emotional, psychologically.
If you haven't been there you shouldn't judge, shouldn't assume, but neither should you feel sorry for the person with that tube. Because feeding tubes save lives, give parents back their children, give back life to adults to spend more time with loved ones, facilitate living when barely existing is the alternative. They can restore normality and health - albeit a slightly altered version.
I was so grateful for my son's tube, it gave us our bouncy, cheeky, intelligent little boy who began to enjoy life once he was feeling better. It gave us HIM as a focus instead of how much he ate and drank. Things are still a little wobbly but for us his tube has done its job, and we are hoping 2013 is the year we bid it farewell.
Feeding tube awareness is so vital for the minority of us who have to live with them. We've had many comments over the years "Give him to me...I'll get him to eat more." "But he looks all right, my kids don't eat either." and more recently "But he eats really well, why on earth would he need a tube?"
Just like any other disability, awareness is key, because with awareness comes understanding, and with understanding comes support. Because many mothers with a tube fed child feel a sense of failure - nourishing our children is our most fundamental role. It's like a "badge" of failure at times, when in fact taking that difficult step agreeing to tube feeding can be one of the best things you do for your child.
And here he is. My Superstar :)
Posted by Twinsplustwo at 09:22