a love of the essence

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.

Three GenerationsSince 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.

Next Generation WhittiesBy 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.

First Day of SchoolAnother 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.Frankie and Papa 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.


My brother, Blake, lived with us as support during the process of tube weaning. He stayed from December 26th – February 7th. In those forty-four days, we all learned a lifetime’s worth of lessons, developed an unbreakable trust, and were forever changed. The events unfolded perfectly: beginning with Blake’s divine Nemo cake for adorable Francesca’s 2nd birthday and ending with his delightful carrot cake with cream cheese frosting for our incredible mom’s 60th birthday. The days in between were also filled with various flavors of frosting. However, ultimately, it was Blake who held us together more than the stickiness of any frosting could have.

Blake not only has a culinary gift, he is also quick-minded, creative, intuitive, and disciplined. I could not have imagined a better suited person than our loving Uncle Blake to help us wean Francesca. The process of tube weaning was truly a team effort and we were thankful every moment to have Blake’s help. He spent his days consumed with the task of making eating fun and with fun came an ever-present mess. In the face of frosting, mayonnaise, and yogurt smeared on the walls, ice cream dripping down the couch, and every food imaginable covering the floors, Blake remained calm and devoted.

He swept and mopped the floor religiously, posted a synopsis of the program rules to help us stay focused, planned fun activities and food crafts (mini-gingerbread houses, cereal and fruit necklaces, fruit skewers, biscuits shaped like houses, valentine cookie decorating), replaced plastic toys with edible toys, braved the grocery store, played with Francesca, cooked amazing meals, baked something aromatic every day, did endless dishes, and gave us the much needed respite to be able to continue to work and to escape to an occasional coffee shop or yoga class. Truly, he was the house elf hero.

Thank you, Blake, for being the frosting that held us together while Francesca uncovered the joy of eating.


We did it! Francesca had her weight check yesterday and not only did her weight stabilize, but she actually gained. She went from 9.31 kg (20.48 pounds) to 9.47 kg (20.83 pounds), which is approximately a four ounce increase (25% of a pound) in seven days. We are in a state of elation, disbelief, relief, amazement, exhaustion, and wonder. Francesca is becoming a normal child who does normal activities, like eating. Our lives have truly been heroically transformed in a single month. We have endless gratitude for Marguerite Dunitz-Scheer at the University Hospital for Children in Graz, Austria. She has a miraculous understanding of the family psychology existing within pediatric feeding disorders. Her knowledge, research, faith, and unwavering belief that tube fed children can eat has truly given us the most phenomenal gift. A woman we have not even had the pleasure of meeting has given us our lives back.

Daily life is beginning to normalize for the first time since Francesca was a newborn. We will not go in for a weight check next week, but rather will give Francesca two weeks before quantifying her success. The expectation is that Francesca will continue to have good days and bad days, but that over time, she will gradually regain the weight she lost through tube-weaning and will eventually surpass her highest weight on record…perhaps without us even noticing. Francesca is still partial to certain foods. Her diet is limited and not the typical foods a health-conscious parent would choose for their toddler. But, we have learned that the most important element right now is for Francesca to be autonomous with eating. Once the behavior of eating becomes more ingrained, in two to three months, we will tackle table manners, etiquette, and balanced nutrition. For now, we are delighted as Francesca continues to vacillate between throwing food, chewing it, spitting it out, and finally swallowing enough to grow. Frankly, Frankie has discovered the joy of eating.


Reflecting back on pre-tube feeding times, I can remember the desperation we felt, the way we switched off when one parent reached the climax of frustration, and the myriad creative feeding techniques we tried. No matter what we did, Francesca would scream, cry, flip over and bury her head, hiding from the bottle. It seemed overwhelming, endless, and without solution. During the peak of frustration and hopelessness, I recall wishing that there was a magic way to get the calories in without a fight. It eventually occurred to me that we did in fact have that option and it was indeed the very same option that we were so devotedly against: the insertion of a feeding tube. Eventually, we felt as though we had no other choice and we succumbed to a feeding tube rather than living in fear that malnutrition would permanently compromise her development.

Over the last week, I have felt remnants of that same frustration, exhaustion, and desperation. I have found a continual need to remind myself that Francesca has a cold and colds are temporary, meaning that she will soon regain interest in eating. However, doubt and fear seeped back in as the time passed waiting for Francesca to take that next (or first) bite. There have, in fact, even been moments when I wished for the exact inverse of my earlier wish. I have wished for the strength, patience, and trust necessary to not resort to using Francesca’s tube for supplemental feedings, no longer our magic answer. Our past still lingers and it is easier to jump to the “what ifs” and harder to stay in the moment of “this too will pass.” While Francesca learns to trust food, I am learning to trust Francesca and this week our trust has been clouded with mucous.

To relax and have some fun, Uncle Blake and I took Francesca to her first movie in the theater on Saturday. We saw Cloudy with a Chance of Meatballs in 3-D, a therapeutic topic. Since Francesca has moved on from “a cone” to “a bowl,” we snuck “a bowl” of ice cream from Cold Stone Creamery into the theater. Sitting there in the dark, with larger than life cheese burgers, hot dogs, meatballs, and spaghetti flashing before our eyes, we experienced another first. Francesca actually let me spoon feed her ice cream, the first time in her entire life that she willingly accepted a bite from a spoon offered by my hand. She was enchanted by the movie. I was enchanted by the spoon feeding. To complete the day, Francesca even ate popcorn. A normalizing experience that we would have previously thought to be as likely as wishing meatballs to rain from the sky.

The Scale of Progress

For being inanimate, the scale is an emotional object. There are people who check their weight methodically, people who vehemently refuse to step on a scale, people who insist that the scale is too high or even too low, people who feign indifference, and people who weigh a couple times a year just to be surprised by the result. For us, the scale has been a focal part of our lives since the day Francesca was born.

Unlike normal newborn situations, where the older the child gets, the less frequent doctor appointments and weight checks become, we have had the exact opposite experience. Over the past two years, Francesca has been weighed regularly, frequently, and faithfully. We have known her weight to two decimal places at almost any given time. She used to scream and cry, but has now found her bravery and become accustomed to the tradition.

Last years’ weight checks were largely a reflection of our actions as parents: how many tube feeds we were able to successfully administer, how many times we woke in the night to feed her, or, conversely, how many times we slept through the alarm and missed a feed (skipping just two night feeds in a week resulted in no growth). Before every weight check, we hoped for the best, but also prepared for possible disappointment and guilt.

Yesterday was filled with a different kind of nervous anticipation. It was the first time in over a year that the scale was to reflect Francesca’s autonomous eating. She had been tube free for nine days and had taken such phenomenal bites. We were poised with the camera hoping to capture the number on the scale reporting that she had been able to maintain her weight. That wasn’t the number we saw and we didn’t take the photograph.

I know we will soon capture and celebrate that moment. We are just not quite there yet. Even though I was initially disappointed and even a little scared that she has continued to lose weight, I have considered and re-considered both the experiential and medical facts and determined that I need to look inside myself for more patience. Francesca is enjoying eating and our job is to patiently wait for her to start enjoying eating “enough.”

Francesca weighed 9.31 kg (20.48 pounds), which is down 11% from her pre-tube weaning weight. However, she has also started to lose weight half as quickly as she was previously. An intermediate accomplishment to celebrate! She lost 200 grams last week, compared to her previous weight loss of 400 grams (during which she was still receiving one or two tube feeds each day). It simply takes time to compensate for such a large caloric deficit.

To help Francesca reach the threshold of “enough,” we have stocked up on plenty of ice cream, a variety of whole milk cheese, heavy whipping cream, and almost every snack imaginable. She needs 1,100 calories a day. We have started to add two tablespoons of heavy whipping cream for every five ounces of soy milk (careful not to exceed 30 calories an ounce for the safety of her kidneys). We add butter to everything. We grocery shop, cook, clean, and hope.

In spite of having yet another miserable cold, Francesca is doing amazingly well. A head full of snot is a discouraging appetite suppressant, but it is also temporary. There have been longer intervals of disinterest in food, more temper tantrums, and plenty of whining. There have also been moments of success, exploration, and sheer happiness. She has turned to her comfort foods and we glow with pride to report that ice cream has replaced ice cubes.

A Taste of Normalcy

As we enter the fresh reality of having a child who actually eats, we have uncovered freedom in many areas of our life, some that are more obviously substantial and others that could be perceived as seemingly insignificant, but for us are monumental. We no longer have to plan our days and our outings in four-hour increments to accommodate timely tube feedings. We are not consumed with the stress of running late, tube feeding Francesca in public, and covering someone else’s house, restaurant, office, or store in vomit (which sadly happened more times than I care to admit). We have ceased being paranoid about getting caught in a natural disaster (like a flash flood) and being faced with the potential of running out of enough tube feeding supplies to nourish our infant (which also unfortunately happened).

Instead, we have found the joy of grocery shopping, cooking, and exploring food together. Many of Francesca’s friends have joined us for our “play picnics” and from each of them Francesca has learned a little more about the value of food. Some of these lessons have been quite overt, as Francesca watches and then immediately mimics. Others have been more covert, as Francesca observes, processes, and then finally embraces something new, hours or days later. Sophia gets the honor of having been there for Francesca’s first breakthrough in trusting food. They played mommy and baby. Sophia handed Francesca snacks (pretzels, goldfish crackers, and cereal) and she finally decided to swallow. Maddy and Sophie introduced Francesca to ice cream. They spent an evening making homemade ice cream and decorating sundaes. Frankie did not try any that night, but the next day, ate six cones.

To help us explore our new freedom, Uncle Blake suggested we attend a Steelheads hockey game on Friday night. Rather than feeling consumed by my old fear of tube feeding Francesca in public and suffering while she threw-up all over the person in front of us, I was just a little hesitant that her new skill of eating might not be honed enough for the social world. We went anyway. The highlight for Francesca was meeting Blue the Bear (the Steelheads’ mascot). She is still talking incessantly about how he gave her a high five, had a tail, wore a hat, skated on the ice, and had big toes. Amazingly, she could spot him anywhere in the stadium. During the moments where Blue was out of sight (but not out of mind), Francesca sat on our laps, eating Kix cereal out of a tea cup, like she had been doing it all of her life. Maybe the next time we go, she will even join the world of sports fans and eat a hot dog.

Aunt Kelly came to visit for the weekend and we spent Saturday showing her some of our favorite places. We browsed the aisles of the Boise Co-Op, admiring all of the lovely food. Francesca spent her time adding things to our cart, shoving Annie’s cheddar bunnies into her mouth, and making friends with everyone we saw. For lunch, we decided to go to the unique Donnie Mac’s Trailer Park Cuisine, a local, edgy burger joint. Both Francesca and Kelly were impressed with the decor of moving flamingos, brightly patterned couches, and old fashioned cars. As we reviewed the menu, it occurred to us that we actually had a reason to read the kids’ menu. After some consideration, we decided to order Francesca the miniature corn dogs with french fries. Even though she did not actually eat any of it, this was a hugely memorable meal for her parents.

For us, disbelief still lingers as we process the reality that Francesca eats: dried cranberries, sourdough toast with butter, chocolate covered gummy bears, cheddar bunnies, Elmo crackers, cheese, apples, peas, ice cream cones, plain butter, Chex mix, bananas, chocolate bear cookies, frosting, fruit loops, Kix, Cherrios, carrots, pear juice, pretzels, candy corn, raisins, cucumber, ranch dressing, grapes, and fruit leathers. For the first time in Francesca’s life, I rocked her at bed time (and nap time) while she enjoyed a sippy cup of (soy) milk. I tried not to cry tears of joy and disbelief in front of her while she willingly drank five ounces in one sitting, an unprecedented amount. Tonight, I put Francesca in her crib not only with a gummy bear, but also with a cup of milk. Our life is truly transforming into a life we had previously only dared to imagine.

A Debut with Ice Cream

Today was at once another exercise in patience, faith, and miracles. Francesca showed no interest in food this morning, other than as a method to make a mess. She spent her time throwing everything on the floor and pouring her juice into every available bowl and plate of food. She was clingy and needy and we could tell that she was struggling. However, she was struggling in a much more composed and mature way than the previous two weeks of screaming, kicking, hitting, yelling, hysterical, angry tantrums. Francesca held out on us until around 1:30pm without eating much of anything. I tried to remain calm.

And then, she opened her mouth and by the end of the day, this is what went in:

six ice cream cones! (just the ice cream and not the cone for breakfast, lunch, snacks, dinner, and bed time)
chex mix (cereal pretzels, and goldfish crackers baked in butter – we made it together!)
normal pretzels, Cherrios, and Kix
a couple licks of a popsicle
orange-mango-peach juice
pear juice
pineapple-orange-banana juice
20+ dried cranberries
a piece of steamed broccoli (stem and all!)
2 bites of buttered sourdough toast
a slice of monterey jack cheese
a little bit of carrot (part of which she spit out)

There likely has never been a parent more amazed by a couch and wardrobe covered in melted ice cream. Every area of our lives has been significantly impacted by the fact that Francesca is happy, asks for food, eats it (at least sometimes), and does not vomit. We are inspired, awed, and ready to continue onwards toward caloric self-sustainment and growth…as soon as Frankie is ready too.

crazy, improbable, delicious, jaw-dropping, beautiful life…

“love your crazy, unbelievable, challenging, side-splitting, spontaneous, improbable, unpredictable, exasperating, big-hearted, absurd, delicious, abundant, inspiring, joyous, daring, jaw-dropping, beautiful life.” -Unknown

That string of adjectives perfectly describes our last few days. As it turns out, the last tube feeding (the one that I was carefully emotionally preparing for) never actually happened. On Monday night, right before bed, Francesca ate just enough Kix cereal and drank just enough water that we decided not to take the risk of over-feeding her and causing her to vomit, which would have been a negative experience for us all. Both Alfie and I have felt an incredible shift in the somewhat more sudden than expected disappearance of the responsibility of tube feeding. Francesca has been 100% tube-free and in charge of her own caloric intake since midnight on Sunday.

This step has been both liberating and terrifying. We are all still in a fog of disbelief that Francesca actually eats, even if it is typically just bites and nibbles. I look forward to that moment when the doubt and awe have completely dissipated and I whole-heartedly believe that our child really does eat. For now, there is a part of me that still feels nervous that eating could be a fad, just something she does for a day or two before changing her mind. During those long periods when Francesca has no interest in food, all of the old doubts and worries start to resurface and I feel the panic that she just might never eat. And then, she does.

We had a doctor appointment and weight-check yesterday. Francesca looks medically stable. The ear infection has cleared up completely without antibiotics, which is a huge relief. Her mouth looked a little dry, but not enough to pronounce her dehydrated. She weighed 9.51 kg (20.9 lbs), which is down from her pre-tube weaning weight of 10.42 kg (22.9 lbs), meaning that she has lost 9% of her overall body weight in just over two weeks. She has 200 grams to go before reaching the maximum weight loss that the Graz program will allow. As difficult as it is to watch her pants get too big, each bite she takes gives us the invaluable reassurance that it is so worth it.

During a trip to the grocery store, the extent of her hunger became hearteningly and embarrasingly obvious. She grabbed apples, took a couple of bites, and threw them. She sat in the cart and asked to open every bag and box. She spit out half-chewed food on the ground. She tried apples, bananas, marshmallows, frosted animal cookies, cheese, carrots, Kix cereal, Cherrios, strawberry fruit leather, apple juice, colored sprinkles, and gummy bears. As we loaded our half-eaten, destroyed, and enjoyed groceries on the conveyor belt, all I could say to the checker was, “I guess we owe you for another half of a banana.” It was a perfect reminder to never judge the parents in the grocery store with the completely out of control child. They just might have a kid who feels as though she hadn’t eaten in two years and be following a child-led therapeutic approach of “waiting, watching, and wondering.”

Francesca has found several comfort foods (in addition to ice): Kix cereal, Cherrios, pretzels, and gummy bears. She has a bowl of one (or a combination of all) in close proximity around the clock. Although I wish they were more calorically dense or nutritionally valuable, I am really just overwhelmed with joy that she is in fact eating. Some people put their children to bed with warm milk, I put mine to bed with gummy bears. She holds them in her hands and in her cheek, like a little chipmunk. She talks about eating their toes. For me, these things trump any advice from a pediatric dentist, at least for now.

It is incredible to wash Francesca’s sheets every day because they have sticky gummy bear imprints on them or half-chewed pretzels smeared all over, rather than to wash them because they are soaked in vomited formula. Yesterday, a pair of Francesca’s pants actually came out of the dryer with butter stains on them. For most parents, that is a moment to dread and for me it was a moment to cherish because it was a permanent reminder that Francesca likes to butter both sides of her toast. And even though she is not quite ready to eat it, I know that it will be delicious when she finally decides to take that first bite.

Francesca has added the improbable, inspiring, joyous, daring, jaw-dropping, beautiful words of “I eat” to her vocabulary. Words we thought we would never hear.

Acceleration to Mmmmm

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.


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.