Faith has transformed into reality, apprehension into expectation, disbelief into belief, and endurance into exhaustion. It is beyond liberating to be able to state that we have honestly eased into toddler normalcy over the last six weeks. The life that we had only imagined a mere ten weeks ago is happening. We are no longer functioning in survival mode, but have moved forward into recovery mode. As parents, after two years of living in “fight or flight,” our immune systems have finally let down. The stress, lack of sleep, and constant worry has caught up with us and for once we have time to actually be exhausted and drained. We recognize this fatigue as a small and restorable sacrifice for a child who enjoys eating and also the next natural step in our journey towards tube feeding recovery. Daily life has normalized and we are blissfully savoring sleeping a little more.
Since weaning Francesca from her feeding tube, we have taken two weekend trips, one at the beginning of February and one at the beginning of March. The first trip to celebrate my mom’s 60th birthday was remarkably different than prior traveling while tube feeding. It was also the ultimate test of faith. As we packed, my brother asked the philosophical question of whether I was going to bring any tube feeding formula. Even though I had moments of weakness where I considered taking an emergency “umbilical” stash, I told him resolutely no. He responded that he had asked not because he had an opinion, but because he was interested in my state of mind. Instead, we packed most of the pantry, fridge, and freezer (including several kinds of soy ice cream), to ensure that we had all of Francesca’s favorites or potential favorites at our immediate disposal. We were excessively prepared to compensate for our uneasiness about whether Francesca’s delicate new skill of eating would translate to a new environment. Francesca did amazingly well and we all had a lovely time with friends and family honoring a significant milestone in Grandma Linda’s life.
By the second trip, just four weeks later, we were already more at ease. We spent a long weekend in Sun Valley with my dear college girlfriends, some of their husbands, and the beginning of the next generation of little girls. On this trip, we did not even use Francesca’s g-tube to administer medication while she was asleep, as she now receives her probiotic twice a day in her “milk” (soy milk mixed with heavy whipping cream) and we have completely weaned her off Nexium with no negative ramifications. It was incredible: our time together was spent doing “normal” things, completely uninterrupted by tube feeds or episodes of vomiting. The little girls played, the adults caught up, and everyone, including Francesca, ate. The highlight for Francesca was riding the gondola to the top of Bald Mountain for lunch. She loved the view and searching for dad snowboarding down below. Besides the joy of spending time with loving friends spread all over the country, the highlight for us as parents was watching Francesca have fun eating with the other children.
Unlike many toddlers, Francesca still has the liberty to decide what she eats and when. During the weaning process, the longer Francesca kept us in suspense, the more liberal we became with our definition of what was acceptable, resulting in the introduction of “desperation food” (previously, junk food). Chocolate, to the delight of both Francesca and her father, is now a respectable choice at breakfast, snack, lunch, or dinner. However, we are also proud to announce that Francesca enjoys something in almost every food group. Her favorites are a little fickle, but currently Francesca’s more standard daily picks are: raisins, toast with butter, cucumbers and carrots dipped in ranch dressing, pretzels, cereal, macaroni and cheese, string cheese, crackers, apples, chocolate, Bugles, mango smoothie, pear juice, and soy milk mixed with heavy cream. She eats relatively little protein and absolutely no meat (in fact, she still gags when it is presented to her). Considering that just ten weeks ago Francesca forcibly refused all food, I think that she has a proportionate-to-time well-balanced diet. Variety will come.
Another previously unthinkable development is that Francesca started preschool on March 2nd, three days a week with six other children. In the morning, we pack her lunchbox (pink with polka dots and a little monkey), put it in her monkey backpack, and she proudly heads out the door. More than the nostalgia that most preschool parents feel, this milestone has been overwhelmingly liberating and normalizing. Francesca has not even gone through a transitional period. Disregarding her previous struggle with eating, she is such a bright, rational, easygoing, social, and agreeable toddler. We have noticed many subtle changes since she started school: she asks what time it is, she opens doors by herself, she talks about her new friends, she has a nifty trick to put her coat on without help, and she exerts her new found independence in the cutest ways. Preschool has been the most effective “feeding therapy” so far. Each day, I look forward to opening her lunch box after school to find the little note, complete with food doodles, that her teacher leaves detailing everything Francesca ate that day.
Even though our entire life has been revolutionized, we still do not have conclusive empirical evidence that Francesca’s weight has stabilized. However, as time passes, I find that it becomes a less and less relevant measure of her overall health and of our success tube weaning. This realization has not only taken time, but also a conscious decision to step away from the scale. At Francesca’s last weight check, she had lost weight (again) and was down to her lowest weight since we had started tube weaning. This news was initially devastating, but after much consideration, I gained a new perspective and focus. I postponed our next weight check (it was supposed to be in two weeks and I re-scheduled for a full month) and stopped evaluating her success by the scale. The experiential truth is that Francesca eats, is full of energy, learns new words and skills every day, and is happy: she is clearly a child who is thriving. This is not to say, however, that I am not somewhat curious about what the scale will report in a couple of days and that I won’t be ecstatic on the day that the number starts to creep upward.
For me, there was an powerful transformational shift the moment Francesca was born: a love that rattled my being, a love so strong it hurt, a love of the essence of Francesca. And I have continued to feel the vibrations of that inexplicable emotion every day since. Recently, however, I have felt another profound shift. For the first time, being a parent has also finally started to encompass the experiences that I actually expected. Instead of cleaning up vomit, running around to doctor appointments, enduring anxiety about impending surgeries, and attending endless therapies that produced no results, I am packing a lunch box, carrying a purse filled with snacks, dropping a confident toddler off at preschool, going swimming, playing at the park, and wiping sticky fingers. Through the challenges Francesca has overcome to get to this point of simplicity and normalcy, I feel fortunate to have had the honor of experiencing a type of rebirth, a second powerful transformational shift: still, a love that rattles my being, a love so strong it hurts, but also, a love filled with courage, a love founded in respect, and invariably, a continual love of the essence of Francesca.