In order to really evaluate the success of our tube weaning experience, I have found that it is necessary to transcend our daily activities to see a broader, bigger picture perspective. It is easy to feel disappointment, frustration, and impatience watching Francesca spit food on the floor for the millionth time or watching her throw the last clean bowl (and its contents) across the room. So, to answer the question on everyone’s mind about whether she is eating yet, Francesca is not eating in our narrowly defined and traditional sense of the verb, but she is “eating” as best she can for where she is right now. And allowing her to go through this psychological and biological process will eventually result in what we have most wanted for Francesca: a positive relationship with food.
We are making incredible progress, that progress is just complicated, messy, and sticky. When I consider the child Francesca was twelve days ago compared to the child she is today, I can see an amazing amount of growth. In the last twelve days, we have watched Francesca transform from a child with no control over her caloric intake (other than vomiting), a child who was reluctant to open her mouth, a child who verbally and physically objected to food being placed in front of her to a child who has no psychological need to vomit, a child who willingly (and occasionally) opens her mouth for food, a child who is intrigued with looking in the fridge, a child ready and interested in making, touching, playing, throwing, chewing, smashing, sucking, and spitting food.
Likewise, I feel a powerful shift in both my beliefs about the value of food and how to parent Francesca. This experience has called into question many of my philosophical assumptions that have likely been ingrained since my own childhood. Some of those are: that you don’t get up from the table without finishing all of the food on your plate; that you do not throw food away because there are starving children in other countries (and our own); that the only value food has is when it is actually eaten; and that you eat what you are given because someone spent a lot of time and money in cooking it. As I redefine my value of food, I realize that we are nourishing Francesca in the way she needs it most. She does not have to swallow to get what she needs out of food right now.
Wednesday was Francesca’s last ever tube feeding while awake. As part of letting go, I felt oddly nostalgic as I realized we do not have many photographs of a process that has consumed our life (a little twisted, I know). She now only receives (while sleeping) 25% of her normal tube feeds, meaning we provide six ounces (240 calories) of sustenance in a twenty-four hour period. For the rest, she is on her own. A nerve-wracking, scary, liberating, and exciting prospect. Francesca is losing weight, but she is gaining confidence. She has put pasta, peas, spaghetti, pretzels, chocolate chips, broccoli, candy corn, cookies, gold fish crackers, popsicle, marshmallows, bread and butter, deviled egg, fruit loops, puffs, carrots, kiwi, apple, pita chips, popcorn, and cheddar cheese in her mouth. Sometimes she spits it out immediately and other times she chews for a while before spitting..and occasionally a little bit sneaks down her throat.
Francesca is working hard to redefine her relationship with eating.