It’s feeding tube awareness week, and I’d like to show my support for my good friends Laura and Gabe, and their daughter, Harmony, who is a growing little tubie princess.
Below is a reposting of Laura’s entry on the Feeding Tube Awareness Foundation website.
When you enter into the world of tube feeding, it can be so isolating, especially since it’s likely your immediate friends and family know nothing about tubes. That’s when it’s especially important to know you are not alone.
There are others out there who have done this, who are doing this, and who have the same questions, struggles, joys, and triumphs. Quite a lot of them, actually.
When my daughter was in the NICU, and her doctors concluded she needed a “g-button,” I googled my fingers off trying to figure out what that was, what it looked like, and how that would help us feed her.
I had a terrible time finding any useful information. It was no big thing to her docs and nurses, but it’s not like they would be going home with us to take care of her.
I remember wondering after discharge who we were supposed to go to with questions. It’s not like her Pediatrician knew anything about all this.
I tried turning to the message board I’d been a part of during my pregnancy, but I felt like I no longer fit in. Thankfully, another mama pointed me to private message board, one that was full of other Tubie Mamas! It was life-changing!
I’d found others who had been there/done that, who could answer my questions and ease my fears. They had kids that were like my daughter, and they totally understood what I was going through.
Over three years later, those mamas are still some of my best friends. They are who I go to for help, support, and understanding, even though I have not even met most of them in person. One of my personal goals for Feeding Tube Awareness Week is just getting the word out.
The resources on our web site need to be easy for anyone to find. I want those new to the world of tube feeding to know where to find a community full of people just like them, so they don’t feel scared or alone.
I want veterans to tube feeding, including tubie-graduates, to know their experience and knowledge is invaluable. Tube feeding really does take a village, even if that village exists online.
Help to raise awareness this week, awareness of this village. You may be the life-line to someone who really needs support!
Laura Wagner, mama to 3-year-old Harmony, is the Chief Operations Mama of the Feeding Tube Awareness Foundation. She also works full time for a strategic consulting organization.