I have realized that Francesca’s last two weeks of learning has been an acceleration of the skills that she did not have the opportunity to master in the first two years of her life. It has seemed so utterly overwhelming, messy, and exhausting because we have just fast-forwarded through eighteen months of missed eating development. The mess that she has made with food in the last fourteen days is likely equivalent to the cumulative mess that she would have made if she had begun eating successfully at six months old. Brilliantly, the refusal and avoidance, smashing and smearing, pouring and spilling, chewing and spitting, chewing and gagging, chewing and throwing have all served the purpose of organizing her mind around the idea of chewing and swallowing.
I hesitate to even commit this to (virtual) paper, for fear that it could jinx us or violate some potential tube-weaning superstition. But, Francesca has begun to swallow! It almost does not seem real, particularly because we are all behaving as though she has done it her entire life. For us, we refrain from any acknowledgment as it is part of the Graz tube-weaning protocol not to recognize, reward, or celebrate eating. For Francesca, it seems that her lack of acknowledgment is because this is the way that she was always intended to be nourished. She is happy and confident. An almost typical two-year old, dragging a stool with her everywhere she goes for out of reach exploration, voicing her opinion in occasional complete sentences, and discovering her favorite foods.
Yesterday, Francesca successfully swallowed six pretzels, a good portion of a small buttered tortilla, two salad greens, a bite of cucumber, a piece of shredded cheese, parts of several miniature marshmallows, and a few bites of vanilla ice cream. The most heart-moving moment was when she was sitting on the counter as we were making dinner. She was munching on a tortilla (that she even helped butter) and repeatedly and beautifully expressed her enjoyment with the universal “mmmmm.” Today, Francesca ate (in the traditional sense of the word!) half of a strawberry, half a sour patch kid, a piece of pear, several pretzels, two gummy bears, part of a couple miniature marshmallows, and at least four small bowls (think: tea set) of Kix cereal. She even asks for more.
To be realistic, we are still expecting her to have better days and worse. We know that she is not at the point of eating enough to sustain her weight, let alone make-up for what she has lost in the last two weeks. We recognize that some days she may choose to survive on ice cubes and gummy bears. But, we also stand in awe of the miracle that is taking place in our lives. We can honestly report that Francesca has found enjoyment in eating. Graz has given us license to decide to eliminate her last tube feed or to continue it for another 48-hours. As strange as it sounds, I am not completely emotionally prepared to stop tube feeding (yet). I need a couple of days to prepare for the climax of completing letting go. Francesca may not need it, but I do and I think that I have earned just two more tube feeds.