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..JPG)
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 :)
Like you say, awareness is key. Thanks for sharing x
ReplyDeleteI hate people who judge because of an illness or disability. Thanks for your post, hope it raises awareness x
ReplyDeleteOh, I wasn't aware of the many ramifications of the issue! I hope your wish will come true and the tube will be out soon but meanwhile let me tell you that I admire your attitude and I have appreciated your post, made me aware of things I didn't know before.
ReplyDeleteInteresting post! I guess a lot of people do not know much about this area, so when they see a child eating for example it may be natural to think 'he eats really well, why would he need a tube?' I think it's really helpful if people that have been through it explain to those who haven't so that we are all aware x
ReplyDeleteThanks so much for sharing this x x
ReplyDeleteAw he is so sweet!! Thank you for sharing and raising awareness!
ReplyDeleteHope all goes well on Friday :)
ReplyDeleteWhat a great post, thank you so much for sharing. It's great that you're sharing your experience to raise awareness for others. Great photos too - especially love that last one, he's looking super cool!
ReplyDeleteI had no idea that there was an awareness week for tube feeding - thank you so much for bringing that to my attention as well as sharing your story - best of luck when it comes to it being removed this week as well. x
ReplyDeleteAwareness week is new to me! It's always lovely to hear real life stories and learn something new.
ReplyDeleteThank you for helping us understand.
ReplyDeleteShared as it is well worth sharing...
A great post, thank you for sharing your story x
ReplyDeleteIt's really interesting to read this actually as my baby was vastly losing weight and they would not send him up to be tube fed (he went back after losing 13% of his birth weight when born at 35 wks and just kept on losing). I kept asking for tube feeding as I thought it would be best for him (he was heavily jaundiced and the time trying to cup feed him meant he was off the billy bed and his jaundice levels rose more). What I'm saying is I never once thought of it as failure and I hope never do you. Thank you for sharing.
ReplyDeleteThanks Pinkoddy. And everyone else for their comments.
ReplyDeleteI wasn't really aware of this so thanks for sharing and from your other posts I'm glad to see that you've managed to say goodbye to the tube x
ReplyDeleteThanks for sharing this - will tweet x
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