Measurement of success is subjective. One person's idea of success may be completely different than another's. In regards to feeding Raya, my idea of success has changed over time. Early on in our journey, I thought that success meant getting Raya off of the feeding tube. There are people and organizations that operate under this sweeping generalization, but there is so much more to "success" than just getting off of the tube as quickly as possible.
When you are on the outside looking in, it can be very difficult to understand what the journey is like. While I was training to run a marathon a few years ago, I had conversations with several people who had run marathons before. They told me stories about their experiences in training and running the actual race and I had an image in my mind of what those things may have looked like. In a small way, I could relate to their experiences because I was running a lot and dealt with similar things on a smaller scale, but I had no frame of reference for what it was like to run for 26.2 whole miles in a row because I had never done that.
In marathon running, of course the ultimate goal is to cross the finish line, but actually getting to that point involves a long series of small victories along the way. For me, it was things like making it up a 3/4 mile hill without walking, staying with my running partner as long as I could, eating small snacks & taking drinks without overdoing it and getting sick, and most importantly, hitting the times I needed to at each mile marker in order to finish in the time I wanted to. It's not JUST about getting to the finish line! Getting there is the ultimate goal, but HOW you get there is just as important.
Thinking about feeding Raya in similar terms has helped me to have perspective. When all you think about is the ultimate goal of not needing a feeding tube anymore, life gets very depressing. The reality is that even "temporary" tube feeding can last years, and when you're looking at a finish line of tube removal that seems light years away without seeing the small victories right in front of you, it is hard to see the progress you're actually making. I thought it might be nice to share some of the successes we have seen over the last 5 years of tube feeding. My hope in doing this is that other people will be able to recognize their small victories as well, and realize that even when the ultimate goal of 100% oral eating feels like it is unattainable, the small victories mean inching closer to that goal.
We have so much to celebrate. Life is not what I pictured 5 years ago when my tiny 3 month old was struggling, but life is good. She lives life fully, and she does not let a feeding tube slow her down.
Someday, Raya will probably be a "tubie graduate". She probably won't need her tube anymore and we will start a new chapter. Until then, we will continue to set smaller goals that will take us closer to that ultimate goal. We will keep celebrating the successes, learning from the setbacks, and working together to balance pushing her toward her goals with preserving her happiness and quality of life. (piece 'o' cake, right?)