Really one of the most amazing parts of entering the world of tubies has been the tremendous support and knowledge within the community of tubies and their loved ones. So many of the parents of tubies are a kind of professional parent…parents with the knowledge of a doctor, nurse, and therapist combined in one person.
Fortunately, a tremendous Tubie Mom, Traci Nagy, with the help of some other amazing Tubie Moms created a place to focus that knowledge in the Feeding Tube Awareness Foundation, an organization that provides information about tube feeding and aims to increase awareness and acceptance of feeding tubes among the general population.
I was lucky that Feeding Tube Awareness was in it’s first year when Ezzy got her g tube placed. Although no one in the hospital helped us find this (or any other) support resource, one we got home I found FTA’s facebook page and have been a regular ever since.
When I interact with people in this group I am constantly astounded by not only the wealth of knowledge available to us, but the honest-to-goodness support offered within the group: one parent reaching down and imparting knowledge that is so often glossed over or unknown by the medical professionals who prescribe, place, and use feeding tubes.
And it has been a real honor to slowly move from one who seeks advice from these resources, to one who can also provide support by using my knowledge and experience.
Another essential piece of the puzzle for me has been in finding ways to connect with other’s who don’t share life with a tubie. I often feel as though people are intimidated of Ez or they feel bad for her and it colors their interaction with her. One of the goals of this blog and my personal use of facebook has been to help people see that Ez is not intimidating–she just needs a bit extra focus and help–nor is she someone to pity–she is strong, happy, and perfect.
Recently Ez was featured in a blog project called TinySuperheroes. TinySuperheroes, run by Super Puddles (a super dog) and his mom Robyn. The blog features children who are facing difficult obstacles in their lives. Puddles and Robyn provide these children with capes to empower them and tell their story in order to make their superhero status clear to the world.
These sorts of projects help families like mine know that other people see our special kids the way we do: as heros!