Are you shocked? No? Well some people are.
When we went back to the hospital for the bajillionth time my daughter came home with a new piece of hardware. An NG tube. For those of you who don't know an NG tube basically goes through the nose and empties into your stomach. Cary Lynn needed one. She wasn't gaining weight and this helps her out.
I was prepared for the tube but what I wasn't prepared for was the reactions. The sad looks from people, the comments, and the fear that comes with the tube.
I also was surprised about the discussions that took place from tube parents. To take your child's picture with it in our out. Show or no show.
I don't like to step on toes. I also don't want to tell you how you should feel about the extras your child comes with. Each person is unique and your feelings are important. I just want to give you something to think about.
We each come into the world with nothing. We each are given tools and gifts to get along the journey we call life. Some people have the tools built into them. Some don't. Some need more help to make it along the journey. Some need wheelchairs and feeding tubes. Some need one or two items. My daughter needs all of those.
I am proud of my daughter. I am proud of her abilities. That does not mean I am always thrilled with all her extras. I grieved. I mourned. Then I looked into her eyes and said, "We can do this." And we have.
So when she came home with the NG tube I dressed her up and took pictures. I don't ever want her to be ashamed of what she is. Ever. Taking her tube out for pictures does not make the tube go away. I do believe that taking the tube out sends a message that I am ashamed of what my child has. And I'm not ashamed. I am proud. So very proud.
This is feeding tube awareness week. There are all types of tubes and all types of people who need them. I will not hide what my child needs for survival.
Like I said I'm not trying to step on toes. Just giving you food for thought. The way you take it is up to you. But I won't hide my daughter's tools. I will continue to take pictures and celebrate her life. Her journey is unique and her tools are necessary to her journey. I celebrate her journey and her life.
Amy Fields is a wife, mother and advocate. You can find her at her blog, Many Kinds of Families.