It's finally here...Feeding Tube Awareness Week is February 6-12 and the result of alot of hard work on the part of some really special tubie mommas. Months of work and tons of love has gone into planning the first ever campaign to promote acceptance and understanding of feeding tubes. There are countless stories of beautiful and amazing tube-fed children being shunned while at public pools, parks, etc. Why? FEAR. Fear of "catching" a feeding tube. Fear of acknowledging that every child isn't healthy and perfect. I think it's really hard for people to see a child with a tube sticking out of them and the only way they know how to deal with it is to turn away and pretend it isn't happening.
Even with Ava, we have felt the stares. We know how it feels to have people pretend to look at something behind us, only to be staring at us. We've had waiters and waitresses run into the back of a restaurant and bring out the cooks to "casually" look at the people at table 12. Busboys have cleaned the same table next to us three times trying to get a view of what we're doing. Children have hovered around us, interested in Ava's tube, only to be pulled away before they've had a chance to ask what it is.
We don't hide in a corner when Ava needs to be fed. It's part of our lives and such a huge part of our identity as a family. It's just not that big of a deal to us...and we treat it that way. Ava's feeding tube has saved her life. It has supplied her with the nutrition she's needed to grow and thrive. Without it, she'd be dead. It's that simple. If there was another way, we'd do it. Putting the tube in was a long hard decision that was not taken lightly. And yes, we did try EVERYTHING before choosing this option.
Over the years, I've gotten really good at not seeing all of the staring that goes on around us. I've shut it out. A coping mechanism? Maybe. The actual act of tube feeding is not a difficult one, but the toll it takes on a mother's spirit, on her soul, is impossible to explain. Seeing a tube in your child day after day, month after month, and year after year chips away at your very being. It changes you...forever. Add to that the insensitivity that exists around us, and it can be downright unbearable.
So all I ask of you this week is to offer a little acceptance and compassion for those with disabilities. Instead of staring...ask questions. Encourage your children to talk to people they view as different. And please remember that these incredible children are passionately loved by an amazing mother whose heart is torn apart every time her precious child is stared at, gawked at, or made fun of. We just want our children to feel loved and accepted.
Check out Feeding Tube Awareness everyday for different discussion topics as well as tons of information about feeding tubes!