Today, my son ate a single slice of boiled hot dog.

I have been waiting for this moment for months.  So much therapy, time, agony, attention, care, and effort have led to this.  I called my husband and gleefully shouted the news to him.  If my son had won a Rhodes Scholarship or been a first round NBA draft pick I could not have been more excited for him.

At last, my son has a meat protein in his diet.

My son was always a lackluster nurser.  I wound up giving up breastfeeding after seven weeks, worn out by the frustration.  Even bottle-feeding was difficult at first because he was choosy about which synthetic nipple he would accept.  Still, he had a healthy appetite, and managed to maintain a healthy weight around the middle of the growth percentile chart.

When we got rid of the bottle at one year, and began to rely more on regular food for his nutrition, he got off to a decent start, but something changed.  We know now that it was  a combination of factors -- poor tone in his mouth muscles coupled with a series of critically-timed ear infections -- that led to what has been for us a long, exhausting roller-coaster ride.

He simply stopped eating solid food.  This was not the "picky eater" syndrome that most toddlers come down with.  The conventional wisdom on toddlers is that when the speed of their weight gain drops around their first birthday,  their food intake drops too.  And however picky they may be, they will not starve themselves.  When they get hungry, they'll eat.

My kid could starve himself with the nonchalance of a hunger striker. 

Over the next three months, he went from around 65th percentile on the growth chart to 35th percentile.  His face began to have that drawn look usually reserved for the kids in the "Save the Children" infomercials.  My pediatrician kept giving me the "picky eater" advice -- "let's give it another month, he'll come around."

Typically, a child will not be diagnosed with "failure to thrive" until he or she hits the 5th percentile for body weight.  I wasn't going to wait that long.  I knew something was wrong, and I wasn't going to wait around for things to get critical before I did something about it.

The cavalcade of specialists that came initially weren't terribly helpful.  The nutritionist could tell me how many calories he needed to ingest, but had nothing of value to offer with respect to getting my son off his nearly all-liquid diet.  The dentist saw nothing wrong with his teeth, and added rather unhelpfully that he "had never heard of such a thing" as a child who didn't eat.  The occupational therapist offered a complicated brushing therapy that is designed for kids with sensory integration disorder.  While it offered an interesting opportinunity to demonstrate counting, that was about it.

All the while, my desperate attempts to push raw calories down his gullet were backfiring.  The conventional wisdom for kids that don't gain weight fast enough is to fatten up their food -- add butter to everything, use cream and whole milk, add calories in any way you can.  But adding butter and cream and milk to the few foods my son did eat did nothing but turn him off.  His trusted foods didn't taste right anymore.  And he stopped eating even those.  Thankfully, he still liked pediasure and drinkable yogurt.

The pleading and desperation were creating other problems, too.  My son grew to hate mealtime.  He would balk at the suggestion of heading to the high chair. It soon became impossible to strap him into the thing.  We tried letting him eat while he watched his TV show.  We tried giving him his own little table to eat at.  Nothing made him want to eat.

I was desperate to find answers, and so I wondered if there was an expert out there, someone who'd written a book.  Most of the books I found were either geared towards a typical picky toddler, or were geared towards the kids who had feeding issues as a part of some larger developmental disorder like autism or sensory integration.  I began to fear that this was a harbinger of a larger issue that I was somehow missing.  My husband's first child from his first marriage was severely autistic, and we'd been told when I got pregnant that our risk for autism was about 8 times higher than normal. John had no markers for autism, and nearly every therapist who encountered him assured us that he wasn't autistic.

 It wasn't until we hit the second set of therapies that we actually got a diagnosis.  Our county ChildFind program sent out a team of developmental specialists to evaluate him.  And my pediatritican, after much prodding, put me in touch with a specialist in feeding disorders at DC's Children's Hospital.  She had a name for what my son had.  Two, actually -- Sensory Food Aversion and Infantile Anorexia. 

Google both terms and you will see a panoply of misinformation and unhelpful theories blaming feeding problems on "attachment issues" between the mother and the infant, and predicting cognitive delays, even though the latest research from the experts indicate that attachment is not the key culprit, and kids with feeding disorders who receive timely treatment do not experience any cognitive delays.  Our doctor, one of the leading researchers in the field, started us on a program to revise how we ran the family meal.  Some of the suggestions we were already doing.  Others were new.  All of it was daunting.

The County evaluation led to bi-weekly therapy sessions to deal with his low muscle tone in his mouth.   Our therapist, Ms. Leigh, was kind and John loved her immediately. The therapy led to a pilot program based on a feeding protocol developed by a doctor in Colorado.  Three kids, three moms, two therapists and a social worker embarked on a "food exploration" adventure designed to help introduce new foods into the kids' diets.

The going was slow.  The process was painstaiking and detailed.  I learned a lot about how a child learns how to eat.  You and I take for granted the notion that when food is placed in front of us, it seems a natural, almost instinctive thing to pick it up, put it in our mouths, chew it, swallow it, and digest it.  For these kids, the experience of eating is nothing like that at all.  The act of eating can be deconstructed into 32 separate actions.  At any point in this complex chain of events the child can balk, and for any of a number of complex reasons.  The process of cheerleading a child past his or her fear to even put a morsel to his mouth, even touch it with a single finger, requires a near limitless well of patience.  The therapies required application of complicated rituals and techniques that demanded not only determination but relentless positivity, lest the toddler get discouraged or combative.

And toddlers eat five times a day, so this elaborate ritual of trial and error, of encouragement, hope, bitter disappointment, and sometimes glimmers of potential success that becomes mealtime threatens to subsume your whole life.  Every meal is a battle that you psych yourself up for, and even after you put forth your best efforts, at the end you may or may not see any progress.  Five times a day. Every day.  There is no giving up, no turning back, nothing to do but press on. 

The fact that eating is such a part of how we socialize doesn't help.  I found myself constantly explaining why my child didn't want a piece of birthday cake at parties, why I needed to feed him special food at Thanksgiving dinner, why my son wouldn't eat his grandmother's pancakes.

On the upside, you learn to surrender that pernicious modern-mamma guilt trip about food.  Parents who worry that their kids eat too many chicken nuggets and not enough broccoli seem quaint.  The ones who militantly insist on all-organic everything seem downright ridiculous. If your kid eats potato chips, you feed him potato chips.  If he'll eat carrots, you thank your luckystars and put them on the plate.  If he wants spray cheese in a can, you squeeze that stuff out and learn to love the fact that he's eating it.  You give up worrying about niceties like utensils and table manners and turn meals into playtime -- if putting cheerios on his head makes him more likely to eat them, then so be it.  If he wants to use his fork to eat pureed green beans, you let him.  Your whole life boils down to two metrics:  how much volume, and how many types of food.

You learn to measure progress in the smallest of increments.  The fact that he'll touch the canned peaches you've put on his plate is an acheivement.  Two weeks ago he wouldn't do even that.  If he'll put it to his lips, that's progress too.  While other kids greedily shovel tortellini soup in thier mouths, I watch my son gingerly place a spoonful of pureed green beans in his mouth and I rejoice, hoping, praying that there will be a next one, and another after that.  You don't sweat the individual moments, the individual mealtimes.  Whatever else you do, you can never force anything. You learn that this is his journey, his struggle, his choice to make. Every. Single. Bite.

It has been 18 months since we started this.  I have spent nights crying because the day to day grind seems unbearable.  In group therapy I have sat with moms just like me and we have shared the struggle that only we know, even as we acknowledge that as disabilities and disorders go, it could be far worse.  I have found other moms like me in the unlikeliest of places. 

The dirty little secret of feeding disorders is that nearly 6 percent of children suffer from them.  That's over six times the rate for autism.  You can't swing a dead cat without hitting a book, or a tv program or a celebrity talking about autism.  Yet there are maybe 3 books that discuss feeding disorders, none of which are entirely on point.  There are no giant foundations supporting research, no celebrities putting their magic behind the cause.  The moms of kids like mine, these kids who just don't eat, often have no idea that they are not alone, that they have options other than just hoping it'll get better. They get desperate and they stay that way, and the children suffer.

I'm one of the lucky ones.  I started out desperate, but I eventually learned that desperation doesn't work.  I'm not out of the woods by a long shot. Five times a day I'm still working on it.  Five times a day I cheer on my son and hope that maybe, just maybe there'll be progress to show for it.  Most days I try to hold off the disappointment by remembering there is hope.  And then there's today.

Today, my son ate a single slice of boiled hot dog.