Safe, Maybe


The gummy smile of the late eight year old Martin Richard is imprinted on my mind as the face of tragedy that the events of the Boston Marathon put into motion on Monday. My eight year old boy is missing all his top teeth too. Three in a row. I have been very conscious of this moment in time – a second really – that passes as a smile fills in and they start to look less like juvenile vampires and more like big boys. This moment when they can understand many grown-up things but they aren’t entirely sure whether a fairy collects their teeth in the night, if they might be magical and their Hogwarts letter is on its way, or if Mount Olympus is presently located on the 600th floor of the Empire State Building. They believe in possibility. They believe in us. They wrongly believe that we can keep them safe.

Having a child with Diabetes, some part of me is thinking about my children's safety all day, every day. But lately there have been so many high profile tragic incidents that have caught my and my children's attention that it's become a topic for discussion. In particular, that I can't guarantee that bad things won't happen.

Are you telling me that villians are real?

This ongoing conversation began in earnest two years ago, when Osama Bin Laden was captured and killed Sam and Talia quickly picked up on the buzz of conversation around them. They wanted to know why people were happy that someone had been killed. I decided to be honest with them even though they were only four and six at the time. As New Yorkers, they frequently walk by the huge construction site where the Twin Towers stood, and where the new One World Trade Center is rising. It is a part of the legacy they will grow up with. They were quite taken with superheroes at the time and I explained that Osama Bin Laden was a villain behind a terrible attack on the buildings that caused them to collapse. Sam asked, “Did anyone die?” and when I responded, “yes” he asked me, “how many people?” “Three thousand” I said and waited for their response. He shook his head in understanding. Talia, after a few minutes looked at me incredulous and said, “Are you telling me that VILLIANS are REAL?” Yes, sadly I am. They are real and even when they die more arrive to take their place.

It gives me hope that the possibility that human beings can be bad continues to be a leap of the imagination for my child (a lucky child to be fair).

Little Ninja Big Destiny: Going for Gold in the Race for True Potential

“You know Mommy, I haven’t unlocked my full potential yet” Sam said to me recently from a sea of LEGOs on the living room floor. Brick by brick, tiny ships with air, land, sea and war capabilities were revealing themselves as we talked. “Well, luckily you know it’s there. If you want to, you have the heart and mind to reach it,” I said.

The comment struck me as a strange thing for a seven year old to say and set me thinking about where he would get the idea that he had potential to unlock. Did I impose this awareness on him? Was it driven by a feeling of security and competency that his future holds a version of himself that is more than what he sees himself as now, or is it driven by a feeling of inadequacy that one day in the future he will be able to accomplish things currently beyond his grasp like catching a fly ball or reaching the pedals of the Batmobile?

The gravity of my responsibility to help him keep that treasured potential in tact for as long as possible is not lost on me. As destiny calls from every which way, my window for making choices is waning and theirs is growing. The butterfly effect of everything that goes in – family, school, friends, environment, culture – exposes them to new trajectories. I can’t begin to imagine what “full potential” looks like for Sam or for Talia. Even if I could, the only picture that matters is the one they will believe in for themselves.

When Sam was diagnosed with juvenile diabetes at 20 months old, we told ourselves that we were going to raise him to be who he would have been anyway whatever that means. In retrospect, I know that’s not possible. Some doors are closed. Sam can’t fly a plane or join the military (not that bad). Sam can’t scuba dive (kind of bad). Sam can’t live without insulin (bad, but getting better as technology improves). These are boundaries, but not limits. What can Sam do? Maybe he will grow up to be more than he would have been if the diagnosis had never happened. Maybe we all will.

What is it to have potential anyway? I’ve always taken it really hard when the kids bring a seed home and it doesn’t grow after they water it (sort of) diligently. Generally defined as a latent excellence or ability that may or may not be developed, I’ve been thinking about this lately with the London 2012 Olympics approaching. Watching the trials, I was riveted by the victory and the heartbreak. All the athletes at the trials were truly champions (and not in the everybody gets an AYSO trophy way). They had spent years training for this moment. Sportsmanship, composure, effort, and for some, the heart to have to wait four years to try again, are a part of reaching this level of achievement.

This year there is more promotion than ever of the Paralympic Games and even an athlete from South Africa who is a double amputee competing in the regular games. No doubt this is due in part to the number of military veterans participating in the games which has increased from 34 to 51 percent in the past two years. It’s true that these elite athletes find new hope through serving their country as Olympians, but glimpsing their true potential for even a moment, a 100 yard dash that might once have seemed like a million yards lifts us all. Those hundred yards, to use a quote from The Little Prince, that is a matter of consequence.

Jon will run the NYC Marathon for the Juvenile Diabetes Research Foundation (JDRF) in October. Until recently, he has never run more than a few miles, but I am certain that he will accomplish this goal. As part of his training, he ran a 10K on Governor’s Island last weekend. Sam and Talia also participated in two races as part of the event - a 100 yard dash and a 1K. I was so worried about Sam in a sea of kids and him possibly having low blood glucose that I insisted that he and Talia stay together. They ran the 100 together without incident. The next race was the one that terrified me because there were parts of the course I couldn’t see. They took their marks and were off. Within a minute Talia had lost her shoe, he stopped and helped her put it on and was trying hard not to run faster than her. They ran with her trailing him. It came off again. He stopped and looked for me in the crowd. Her sparkly purple Velcro sneakers and my worry were holding back the two years of strength and agility he had on her. I met his eyes and waved him on. Go, Sammy, go. Run.

I went to Talia and helped her with her shoe. I told her she was a champion. Don’t give up. Never give up. Finish the race. Her shoe came off four times. She came in dead last to the biggest cheers of all because she kept putting the shoe back on and resuming the race. Sam, despite two stops to help Talia still placed in the first half. Both kids received gold medals. I think the 100 yard dash and the big long race are both happening for all of us everyday. When a shoe comes off and no one will fault you if you stop running, but they’ll certainly applaud if you keep going.

As it turns out, Sam is not exactly cognizant of being on a journey of self-discovery towards his true potential the way I had initially thought when he made the comment to me. Apparently, the plot of the popular animated series LEGO Ninjago, Masters of Spinjitsu, involves Sensei Wu and five young ninjas with an interconnected destiny who seek to unlock their "Full Potential." It is a classic and complex fable in which the balance of the world depends on their victory and their victory depends on the depth of their character, the opening of their hearts and their ability to use their gifts. When they unlock their true potential they gain exceptional powers. In this state, their golden weapons illuminate brightly, and their bodies glow. To reach this state, they are faced with the question: What is the obstacle of my hero journey?

After we left Governors Island, we realized that we had left Talia’s beloved Hello Kitty behind on the grass. She was sad and I was sad for her. The next day, there was an unprecedented thunderstorm. Talia ran to me after the first thunder beside herself that Hello Kitty was alone in the rain on the island. Sam immediately came out with, “Talia, Hello Kitty is in a mail truck on her way home” and looks at me imploring me to agree. He completely took control of the situation (despite having used some critical ninja deception for tactical purposes). Helplessly, I confirmed his statement and resolved to try to find a doppelganger HK on the internet.

This small kindness is one among many that I have seen Sam give to his sister. The shoe incident described above is another. He is a good sport (even about his health challenges) and works to make sure that everyone around him rolls with the punches in the face of all the noise and chaos that surrounds us. At a recent street fair, while Sam was perusing a table of vintage superheroes, Talia threw up pink lemonade all over several of the exact same repulsive fork-tongued, serpentine villains. In an awkward panic as Wayne and Garth stared at me to see what I was going to do about the fact that my kid had just puked on their merchandise, I bought the whole lot. Talia looked at the serpent beasts that she now owned with disgust (even after I had cleaned it up) when Sam says, “Talia this army is the rarest of rare.” If you know Talia, she is very attracted to the rarest of rare. She stopped crying and they started playing a game where any less than four of the cloned reptile wouldn’t have been as much fun. It’s a small thing but these little shifts that he is capable of making in our family’s little universe - these new trajectories - make me think that Sam’s exceptional power or “golden weapon” is mastery of himself and his environment. The obstacle to his hero journey will be to carry this treasure – in tact – as he and his world become more complex.

Pushing the Limit

A few weeks ago, Jon and I decided to take to the sea with Sam and Talia (now aged six and four) on a 35 foot sailboat off the coast of Maine. This idea inspired a variety of reactions from friends and family. Most opinions centered somewhere between concern over our sailing prowess (which thankfully is better than you might think), disbelief that “camping” on the water with children could be fun, and my personal favorite: “that’s not crazy – that’s completely, totally, bat shit crazy.” I knew that certain elements of the trip would push the limit, but I wasn’t sure where the limit was so it was hard to worry too much about it. Armed with five vials of insulin, three loaves of gluten-free bread, and a satellite phone, the four of us set off from Southwest Harbor in search of adventure.

The sun was shining and I was giddy with how untethered I felt as we cast off. The kids were exploring the limits of their harnesses (about three feet) and Jon and I were figuring out the systems of “Circe” a beautiful 1964 Hinckley with a bright red hull. We plotted a course for Little Cranberry Island. Within minutes an opaque fog started to roll in and we couldn’t see 10 feet in any direction. Circe was very well-equipped with both radar and GPS. These instruments reminded us that the world wasn’t far away, but the isolation of that moment was striking. Sam said, “Mom, I feel like we are the only people in the world” which was exactly what I was hoping for if only for a brief two weeks.

The idea of being alone and “off the grid” can be both frightening and exhilarating. Obviously the fact that Sam has diabetes added a layer of complexity to our preparations for this trip. The possibility of an emergency is omnipresent and in this environment we had to accept that we might have to manage one on our own. My cell phone and blackberry had limited service from the moment we left the dock. After a day, we acclimated to the cadence of being on the water and I stopped checking to see if I had service. I was comfortable that we had the boat radio, the satellite phone and most importantly the proper supplies (glucagon) for a diabetic emergency. When I think back five years to the fact that I was afraid to leave the hospital in New York City after Sam was diagnosed with diabetes – afraid that I would be unable to keep him alive – I am amazed at how far we have come.

I was relieved after we successfully picked up a mooring at Little Cranberry. It had been more than seven years since we chartered a boat (and never with our children), and I felt that if we approached each small challenge individually the trip would be a success. Through the dense fog, I could see a single light on the dock marking the restaurant where dinner was waiting. The only thing separating us was a few hundred yards of harbor and the task of getting the kids off of the boat we had just secured, putting them in an eight foot inflatable dinghy in the dark, and going ashore. Jon started the engine. I passed the kids down to him, hopped in and released the line that had us secured to the boat. And then the engine died. We were slowly moving away from land on the dinghy and our sailboat was fading into the fog and darkness. Jon picked up the oars that were in the bottom of the little boat for this purpose, rowed us back to our sailboat where we tied on and figured out what was wrong with the engine. Once it was humming consistently, we went ashore.

The fog gave us the same view from land that we had seen from the water of the single bright light on the dock. I focused on the kids, and the fact that they trust us so completely. They believe that we will keep them warm, safe and dry. Even when they were wet, cold, and drifting rudderless through the ocean at night they still seemed to trust us.

We ordered lemonades, declined the warm bread basket as we usually do in restaurants with Sam, and scanned the menu for gluten-free options. Sam chose a cold cantaloupe soup with chilled lobster and edible wildflowers and we all shared a lobster cioppino. The meal concluded with strawberry ice cream and by the time we went back outside the fog had dissipated into the night and we could see all the boats in the harbor as clear as day. There were more stars than our children had ever seen and we lay on deck for a long time staring at them.


The next morning, the wind was blowing like crazy. The halyards were banging against the mast and the kids ate breakfast down below while we readied the boat. It was a fairly long haul in choppy seas to our next port. This was the only day the kids didn’t feel well – particularly Sam. Talia fell asleep immediately upon encountering the swells – she is a professional at powering down in difficult situations. Sam worked through it and spent his time looking for bald eagles (which we were lucky enough to see several of). Once we got back into the lee of the island, the waves subsided and we sailed into the stunning Frenchboro Cove – a small island with a school, a church, a working dock, two small seafood shacks and miles of hiking trails. On our first expedition, Talia collected an impressive bouquet of wildflowers and left them at the entrance to a small graveyard in honor of my grandmothers who passed away in April. We all slept soundly in the protected harbor.

After a breakfast of gluten-free pancakes on the boat, we went on an early morning hike to pick wild blueberries in the woods. The deeply wooded trail eventually led to an amazing rocky beach. We were alone, far from the boat radio and the Satellite phone that turned out not to work anyway. Sam started to drag and I knew he was low. Although we had juice and a snack we were starkly reminded of the invisible boundaries this disease puts around us.

The days continued like this – surrounded by incredible beauty, filled with the emotion of really being able to see each other, and interrupted periodically by challenge.

The parallel with our everyday life was magnified out on the boat. Some days are all challenge dotted with moments of beauty and other days are the opposite. Conditions change in an instant and while it’s imperative to have the right supplies it’s equally critical to be able to navigate through the fear and doubt and “manage” the daily “emergencies” as they arise. The fact that I am actually a professional emergency manager for work is ironically not an advantage. Quite the opposite actually as my risk index is pretty tuned to all of the things that could go awry on any given day. I can imagine the "job" coming over the radio: We have a confirmed confined space rescue: Two parents are locked in a boat head over marshmallow dispute. The suspects are both three feet tall with sticky fingers...

We definitely took calculated risks on this adventure and pushed the kids pretty hard. We didn’t find their limit. By the end, the kids were driving the inflatable dinghy. The fear and doubt I felt lowering them into the tiny boat that first night on Little Cranberry disappeared after a few days the same way the first night home in October of 2006 is a distant memory. Somewhere in the back of my mind there is always a gnawing discomfort for the safety of both of my children, but it’s not looming over me in the same way anymore. It’s not complacency and it’s not confidence. Diabetes doesn’t allow either one, but somehow pushing ourselves in other ways was very restorative. There was a night we ate “egganogin soup” (named by the kids for Eggemogin Reach) for dinner which consisted of giant marshmallows roasted to perfection with melted chocolate and gluten-free graham cracker crumbs served in a bowl (58 carbs). Even with a double reef in the sail, there were a few times we had the leeward rail skimming the water while the kids held on with delight. We hiked a country road at night under a brilliant sky and over beaches covered with giant boulders. We sailed wing on wing and anchored in desolate coves.

For a moment, the four of us were the only people in the world – without limits, without fear, but always with a juice box.

Book Review: Rabbit Hole for Rent and Other Allegorical Tales

I was asked to do a reading on the topic, "Unclaimed Space" at the Sackett pub in Brooklyn and I thought I would share what I wrote on SFC...

Seeking out the novel and the alien in a world that is designed around routine and obligation isn’t easy. There are fewer hours for getting lost, less proximate unexplored spaces, and more empirical evidence that I may not actually have any superpowers. This last bit of self reflection may seem irrelevant to a love of getting lost, but across a lifetime, my belief that I could always find my way home – even defy laws of physics and tamper with fate--made it easier to disappear. I also happen to know how to read a map.

As a kid, my dreams were always geocoded to the same location. The world of my nighttime adventures was debatable, ethereal, and fantastic. As I walked alone on the silver pavement, the concrete would turn into a sundrenched stream, the city would fade away and I would be left standing with wet feet in an unfamiliar landscape. This never scared me. I wished for it. I expected it. I still expect it and I know there are other adults out there that expect it too.

The reason that I believe in this possibility is because I was introduced to science fiction before I had a firm grasp on the limits of reality. Like a heart that has never been broken, imagination space free of imprint was first marked by the backdrops and characters of beautiful, but terrifying places. These were places riddled with conflict, and it was here that I first learned about the truly wicked ways creatures can treat each other, and their worlds. Children are well-equipped to become citizens of imaginary lands - shaped by the cultural identity of places like Edgar Rice Burroughs’ Mars (a.k.a. Barsoom) and C.S. Lewis’ Narnia –where violence and warfare are an inescapable part of being on the side of right. In these places, I witnessed the customs and traditions of people concerned with harnessing the scarce resources of their world for survival and made peace with the art of war.

Each night as I read stories with a flashlight under my covers I wondered if tonight might be the night I would fall down the rabbit hole into the lands beyond expectation. I was ready to be pressed into service to save a dying planet or to restore the earth’s equilibrium. Empty wardrobes, bricked in alleys, and unclaimed spaces where a child might hide – or better where they might seek, and find a world that would reveal their true identity -- were passages. Marked by beacons that only the initiated might see, these roads alluded to the promise of heroic work. Side of right jobs are difficult to come by and it’s a gift not to have to look elsewhere to create meaning in one’s life. I wanted one.

While waiting for my offer, I was expected to get an education so I built my ability to recognize danger and create alliances. I studied aesthetics – literally the examination of different ways of seeing and perceiving the world, hoping that I wouldn’t miss the beauty disguised all around me. And then there was this thing about the maps. I studied planning, but it was my informal work in this discipline that has a direct correlation to the superhero waitlist. I meticulously catalogued and memorized tactical terrain. The visual geography of moss-covered dead-sea bottoms, extensive canals and the inhospitable frontier that separates the deserts and cities of Barsoom is as clear to me as any landscape on Earth. The in-between spaces – unnamed, unremarkable and on the way to somewhere else – are the ones that determine the way home and tell the story of whether one arrives at their destination.

With time though, the real estate of imagination gets cluttered with the rights and responsibilities of the perceptible world. I didn’t quite fall down the rabbit hole (unless you count the time my infant son was diagnosed with juvenile diabetes), but I have heroically found my way back from dark places. My side of right job at the moment (when I am not managing emergencies in NYC)is reading the Phantom Tollbooth to my children as frequently as they can stand and making sure they study the landscape between the marked foothills of confusion and the great city of Dictionopolis. My heart sings when my children try to conduct the sunset or demand that we call a wizard when a task exceeds our mere human abilities.

I dutifully got a day job too, but my predilection for mythical creatures, righteous warfare, cartography, and being unexpectedly thrust from reality into another time/space continuum is still there. Like an avatar waiting for my return, the girl standing with wet feet in an unfamiliar landscape waits.

I am not sure I want to know if she's real or worse, if she isn't. In this hyper-networked world where do any of us live really? From the rabbit hole to the wardrobe to the imagined geography of all of the places I’ve never been, the who and what and where of becoming a citizen of a place has changed. In our dissolving hearts, minds, and countries? In the boundaries? It’s the space between us that is most notable – the last great wilderness.

Required Reading:

The Phantom Tollbooth; A Princess of Mars; Alice in Wonderland; The Lion, The Witch and The Wardrobe; Le Petite Prince; A Wrinkle in Time; The Secret Garden

CELIAC: 1st QUARTER REPORT

Summary:
The results are in: Sam's diagnosis of Celiac Disease back in September transformed everything about the way our family manages food. After four months of living gluten-free, we have figured out how to cook anything at home, but restaurants, grocery stores and travelling are still only nominally tolerable. The corridor of wheat (a.k.a. AIsle Six) at the local Met Food brings out near panic for me – so while I am breathing into a bag in the grocery store, Sam cheerfully tosses food into the cart conscientiously asking “Is this gluten-free?” about each item. We have made all of the appropriate adjustments to our pantry, met with nutritionists, and armed ourselves with knowledge (and cookbooks), but truthfully, Jon and I are both still really pissed off.

Management: Phase Out of the Amber Waves
The last few months have encouraged me to question whether wheat is a product that even needs to be replaced. This iconic crop is in everything - it appears on our currency and in our national anthem. It is inextricably connected to our economy and environment and it is a staple of the American diet. Living a wheat-free existence, despite the growth of the “gluten-free movement,” is a real cultural departure in this country. While I harbor serious affection for many gluten containing foods, from a nutrition perspective I think I am OK with phasing it out. Maize and rice share the stage with wheat as the key crops that feed the planet and this new diet has really forced us to examine the pros and cons of each of these. There are many available options, but for a price.

Financial Results of the Quarter:
Replacing regular products with gluten-free alternatives comes at a serious premium. The costs aren’t double – they are actually about four to six times as expensive. A 50lb bag of wheat flour costs approximately $15. The same amount of a comparable gluten-free flour ranges from $66 for certified oat flour to over $200 for sprouted brown rice flour. That cost is carried over into every product. Despite this, in our quest to continue feeding our children healthy food that they will eat, we have swallowed the $3 / per frozen organic gluten-free chicken nugget cost and made some changes in our house.


Acquisitions:
Our Sunday tradition of pancakes, waffles
or muffins is still going strong thanks to Pamela’s Mixes (pictured above), Bob’s Red Mill and the Gluten Free Pantry. Breakfast cereal (EnviroKids, Chex, Barbara’s) and oatmeal (GlutenFreeda and Bob’s Red Mill) were easy replacements. For me, the widely available rice (Tinkyada) pasta and my preferred corn pasta (rustichella d’abruzzo or Bi Alimenta from Italy) don’t really cut it, but the kids like it (and I don’t mind that they eat less of it than they used to). Our other major replacement staple is Applegate Farms and Bell & Evans gluten-free chicken nuggets. In the category of sweets, there are an abundance of products: the KinnikKinnick chocolate donuts are our favorites. Sam compared them to the famous Downyflake donut shop in Nantucket which is as good of a donut endorsement as I can imagine. Other standouts include Jules’ organic ice cream sandwiches, anything from My Dad’s Cookies, and Namaste brownies. To my surprise, the Betty Crocker white cake mix is really good for cupcakes, but I am always seeking out new additions and I recently learned that Stonewall Kitchen has an entire gluten-free baking line. I received my first shipment of chocolate chunk cookie mix, Vanilla cupcake, and Chocolate Brownie mix today. There is no need to give up ice cream cones as the Edward and Sons gluten-free sugar cones are perfect.

Oh Dough!
Unfortunately, Sam isn't a fan of certain types of rice flour that are in many of the gluten-free dough based products. We tried making pizza at home several times without much success. With the first batch, Talia took one bite and said, “Mommy, this is NOT my taste.” It wasn’t my taste either. Risotteria, a wonderful gluten-free restaurant in Greenwich Village, sells a dough mix which we bought, but haven’t yet tried so hopefully that will yield a good result. We are fortunate to have a few pizza places locally in Brooklyn (BenCotto’s and Front Street Pizza), but I also found a company called Still Riding Pizza http://www.stillridingpizza.com/ that will ship their dough to your local pizza parlor and come educate them about how to safely prepare it.

Bread is very difficult to replicate. Gluten-free bread just doesn’t have that springiness… that pliability…that GLUTEN that makes it so elastic and good. I did find one type of bread that I would eat voluntarily called Food for All, made up in Ulster County using chick pea flour (The people who make it run the wonderful gluten-free Soul Dog Restaurant in Poughkepsie). It's not sold in the City yet so for now, Udi’s is passable if you toast it and is available in many stores. Canyon bakehouse is great for hamburger buns and seven grain bread, but is not as widely available. Forget bagels – a gluten-free bagel is just a waste of carbs, but if you really must then Glutino and Udi's both have a product. I should mention that many of the replacement products have more carbs and calories than the wheat based equivalent so they aren’t always the best choices from a diabetes perspective.

The net issue with replacing any or all of these products is really more about the loss of experiences than about nutrition. The loss of spontaneity when it comes to food is a drag and I lament that Sam will always have to think ahead before he leaves the house. Especially when travelling I always loved happening upon local food. The first time Jon and I went to Paris, we worked up an appetite on a long walk up to Sacré Coeur in Montmartre. When we got to the village centre, a street artist (recognizing us for the novice tourists we were) made a cutout of our silhouettes while we grabbed some baguettes with ham and butter and ate them on a bench. The smell and taste of that bread is so ingrained in my memory. There is nothing better than a warm loaf of French bread. I don’t even want to think about that ham and butter on a piece of bread made from rice, chickpeas or tapioca.

List of Material Events for the Quarter: Thanksgiving, Christmas, and Eternal Passover (without the matzo)According to Jewish tradition, on the days leading up to Passover families rid their homes of all traces of Chametz or leavening that is fermented in the following five grains – wheat, rye, barley, spelt, and oats. After our first trip to the Celiac Clinic at Columbia University, that is just what we did - we went home and turned our pantry inside out to remove any food that contained those five grains from our possession. The nutritionist recommended that we purchase a new toaster and replace our colanders for fear of contamination, but we felt that was overboard and that we could adequately clean the kitchenware and use foil in the toaster going forward. We wanted our house to be a place where Sam never had to ask if something was gluten-free and so far we have been able to uphold that standard.

Leaving the house is something else entirely. The extra bag we usually pack for diabetes supplies now has a companion bag filled with gluten-free food and alternative flours (see below).



Our first attempt at travel was for Thanksgiving. My sister-in-law, Eleonore, is a gracious host and wonderful cook and was supportive of the complex dietary needs of our group (vegetarian, diabetic, gluten-free). She prepared buckwheat crepes (there is no gluten in buckwheat despite the name) for the kids as a hors d’oeuvre replacing the blini’s we used to make in years past and was open to using our substitute flours. In addition to the traditional menu, we had a fantastic gluten-free Swiss chard and sweet potato gratin, gluten-free cornbread stuffing, and Jon baked several gluten-free pies (see below).



For Hanukah, we used a flour free potato latke recipe that we found online (from the Beverly Hills Hotel) with great success. Christmas dinner included a vegetarian gluten-free pot pie and homemade chocolate pudding (both adapted from the Barefoot Contessa Parties! book). We adapted Jon’s Nana’s sugar cookie recipe (top photo)to make Christmas cookies, but we skipped making our annual gingerbread house, sweet rolls, and the Bûche de Noël from gluten-free baking burn-out. We also had what we are calling the Christmas miracle: Sam tried Salmon and loved it - opening up a whole new world of protein based meals to us.

Our cooking success continued with a phenomenal gluten-free soufflé on New Year’s Eve and the piece d’ resistance: Talia’s 4th birthday tea party. The girls had gluten-free scones, marzipan and tea sandwiches filled with Nutella, American cheese, PB&J, and cucumber on Udi’s bread. The menu also included a heart shaped gluten-free cake with crown candles. For Sam’s superhero rock climbing party the following week we ordered gluten-free pizza to be delivered to the gym where the kids were flying across zip lines and scaling the walls. The pizza wasn’t a hit with the kids. One of the parents overheard Sam say, “I don’t like the pizza either, but I know I should eat it so I don’t get low and plus my mom got it for me.” He also had a gluten-free chocolate SuperSam cake.

Despite all this effort, we still make mistakes. I mindlessly added beer into the chili I was making during the football play-offs. As soon as I did it, I realized my mistake and felt compelled to get in my car and get new ingredients to make a separate pot of chili for Sam. I was extremely upset with myself, but I just hadn’t thought of beer as containing gluten because it’s not a food that I generally associate with Sam. Sam didn’t end up eating the chili anyway, but I was glad that I made it for him.

There is no way we can permanently protect him from the psychology of denial. He has to eat a different snack at school and celebrations are a challenge, but many people have shown us great kindness in trying to include him. Sam was so excited for the Chinese New Year celebration at his school because he remembered the dumplings from last year. Unfortunately, the dumplings were not gluten-free, but one of the parents made an alternative dish for him. My sister-in-law, Michelle made the top layer of her daughter’s birthday cake gluten-free. At another party, they ordered grilled chicken just for him. When Sam goes to a birthday party now, we make gluten-free cupcakes and bring them along.

Restaurants are touch and go. They are either accommodating or disastrous. We had a birthday celebration for my mom at the Depuy Canal House in High Falls, NY. When I couldn’t find a single thing on the menu that didn’t contain wheat, I asked the chef to cook pasta that we brought from home. They made a beautiful sauce for the kids and served it with a plate of fruit and cheese. In another restaurant, the chef made Sam French onion soup without the bread (but with the cheese). Lilly and Lou's on East 61st Street has an excellent gluten-free chinese menu. To see Sam eat dumplings again was a joy. We also discovered that the "Best Chocolate Cake in the World" located in DUMBO is also gluten-free and they ship anywhere. These are the good stories, but I have a few bad ones too, including a restaurant that adds flour to their rice, restaurants that advertise that they are gluten-free (only to get there and see one crumbly cookie as the big gluten-free item)and the lodge at the ski mountain that only offered battered foods, pizza and baked goods. At the mountain, my kids ate clementines and yogurt out of our bag while all the other kids were eating cookies as big as their heads. I understand the convenience of the “children’s menu” but I really think that it does a great disservice to the health and palate of our kids. Having children eat only hot dogs, pizza, chicken nuggets or pasta in restaurants is not good thing –whether a child has diabetes and celiac like Sam or not.

Accomplishments of the Quarter:
We have all drastically changed the way we eat and we are trying to come to some level of acceptance. The high point: Sam, gracious and accepting as ever, asking me why Talia can’t have a muffin at a bakery “I mean it’s not like she has Celiac.” The low point: Watching Sam walk up to a proprietor of baked goods at a farmers market and asking, “Is any of this gluten-free” and then having him re-assure her that it was OK after she offered up a pity-filled apology. I guess the point of both of those anecdotes is that I believe Sam has adjusted well. At his first visit to the endocrinologist after a few months on the gluten-free diet he grew an inch and gained four pounds so we are lucky that he was diagnosed before he had any significant damage to his body. Future prospects are good… as long as I continue to carry my paper bag to the grocery store.

Know thy Enemy: Food (Gluten Edition)

This journey has recently led me to hate food. I am considering just cutting it out all together. The whole thing is a hassle. Despite the primal necessity, food has become a complicated and insidious enemy. I hate thinking about, shopping for and preparing it - endlessly standing on line at Trader Joe's with a cart full of organic cereal and the deceptively named Simple Times beer. I hate carbohydrates with their sweet little dispositions bothering the pancreas to work so hard all the time. I am obliged to hate meat by marriage, with all it's cruel and carbon producing evil. Salt, fat, corn syrup - the list goes on and on. Sustenance has become bittersweet at best.

When Sam was diagnosed with diabetes, we made a decision not to limit his relatively healthy diet. The insulin pump really allowed him to eat anything as long as we diligently counted the carbohydrate content. Sam likes to eat. I would even say he loves food. On our recent trip to Maine, we spent a few nights camping in Acadia National Park. Sam was beside himself about the fresh blueberry muffins that magically arrived at the "gathering place" each morning and the delicious whole wheat pancakes cooked by Dad on a camp stove. We ate popovers with strawberry butter with our friends after a big hike around Jordan Pond and peanut butter sandwiches on the summit of Great Head Trail. We even took the kids with us to The White Barn Inn - a very grown-up restaurant with a fixed four course menu. When we showed up there with two small children in tow people (rightfully) looked at us like we were crazy. While Talia ate only butter straight from the dish, 2 pieces of bread and a souffle that you pour chocolate sauce into (exclaiming "Mommy I have never seen something so delicious") Sam tried everything that came out. From veal carpaccio to parmigiano regiano mousse to avocado lime sorbet, and of course the dark chocolate truffles, he went for it all. More than the idea that he is willing to try things, I loved how he understood that this was a special experience and really embraced it. Sam is like that, always in the moment. After dinner, the four of us went swimming in a salt water pool under the moon and laughed about the incredible meal that went on forever. So many of our best experiences revolve around the comfort and pleasure of food.

Fast Forward One Week: Now back in New York, we are trying to get the 504 Forms (a.k.a. Diabetes Management Request for Accomodation) approved by the Department of Health so Sam can begin school. With vacation fading into memory, we are banging through our extensive list of tasks just to keep our everyday life on track. A routine trip to the endocrinologist reveals that while Sam has grown several inches, he hasn't gained any weight in a year. The doctor suggests some bloodwork. I am so sure that nothing is wrong that I don't even ask what they are testing for. We already have "our thing." Later that week, Jon takes Sam for the blood draw. He sits on Jon's lap and Jon says ouch when they prick Sam, but Sam doesn't say a word. He gets a green band-aid and I don't think of it again.

A few days later, I am at lunch with a good friend of mine. It's a pretty nice day and I am drinking a hibiscus ice tea in the courtyard of a restaurant in the building where I lived when Sam was a baby. I am actually laughing when my phone rings. I don't recognize the number and when I pick up, our endocrinologist is on the line. He tells me that Sam has the antibodies for Celiac Disease and will need to have an endoscopy to confirm the diagnosis. This is likely the reason he isn't gaining weight. I am shocked. "No" I say, "Sam already has something. I don't wan't him to have anything else." I am shaking as I ask him questions while my friend, who can't hear what the doctor is saying looks on in a kind of sad silence. Nobody wants Sammy to have anything else. I hang up and cry for a minute and then I call Jon. To my surprise, he says, "I knew it. I knew he had this and I was waiting for this call." I am disgusted by the unfairness of this diagnosis and by the gluten-filled soba noodle soup in front of me. I hate the soup. I hate the soy sauce on the table -- soy sauce -- who would think that has gluten? I hate that my sweet, brave child has to manage something else.

If Sam didn't have diabetes Celiac wouldn't be that upsetting to me. I know lots of people that have this (10 percent of Type 1 Diabetics) including a friend who is a chef and instinctively I know we will figure it out. Still he doesn't need this. He doesn't need another thing to make him different or to limit his enjoyment of food and all the experiences that surround it.

At one point on that first day, I said to Jon "Can you f'#%@!in believe this?" and he responded that he feels like this is how it has always been -- and just like that it has.

Jon and I decided not to tell Sam until we could figure out how to do it correctly. By correctly I mean in a casual way that won't alarm or sadden him, but will give enough explanation. I feel as though we have been successful with the psychological aspect of managing Juvenile Diabetes and I don't want to chip away at his positive attitude and acceptance of that diagnosis. We also agreed immediately that the entire family will be gluten-free at home after the endoscopy.

Over the next few days, I started buying a few Gluten Free products to try them out and slowly introduce the change. My idea was that I could find a few things that Sam liked before we began to talk about it so I could say, "you can still have Gorilla Munch and Lara Bars." An opening for the conversation came a few days later when, we happened upon a gluten-free bakery in the East Village on our way from picking up our newborn Tamagatchi (If you don't know, it's an electronic vintage toy that requires constant care or it will die - and no, the irony is not lost on me). I bought a cookie and an exceedingly dense so called "chocolate halvah" and began a conversation with the proprietor about the bakery while Sam and Talia were playing with a stack of free New York Spirit Magazines in the window. Sam turned around after a few minutes and asked, "What's Gluten?"

And so another new dialogue beyond his years begins.

Endurance Race: One Step Forward Two Steps Sideways

Readers of these chronicles know that we try hard to highlight the positive. That includes our acceptance of Sam’s diagnosis, our marvel at his bravery, and our appreciation for our child just as he is. Still, it would be misleading to say that we actually have a handle on the emotional strain we fight everyday.

On Monday night, Sam’s blood glucose was over 500. This is a ridiculously high reading considering that when he was hospitalized for his diagnosis he had been around 250. He was lethargic and cranky from being high all day. We decided to change out the pod for his insulin pump which turned out to have a bend in the cannula, but because of the length of time he had been high we also decided to give Sam an injection to be sure he got the needed dose quickly. At the mention of the injection Sam started to cry. Really cry. I can count on my hands the number of times Sam has cried hard in his five years so when he does, it breaks my heart because I know his upset is real.

Before Sam had an insulin pump he did injections multiple times each day and never fussed about it. It has now been a long time, and he was expecting it to feel like a flu shot (which he never cries about anyway). I showed him how tiny the needle was and I held him while he negotiated with us. Eventually, I just gave it to him. He cried and asked me for a band-aid which I did not give him because I didn’t want to set that precedent. I also didn’t want him to see the band-aid as a lasting imprint of this event. After a few minutes he stopped and said, “Mom, I just forgot what it was like. I just forgot and I wasn’t used to it anymore.” It occurred to me that I am not “used to it” either and there will be a thousand episodes in our shared future that will make sure to remind me not to “forget what it’s like” for a child to have to endure this.

Fire has Zero Carbs

One of the most profound challenges of having a child with diabetes is figuring out how much to say about the disease and when. This incremental “education” takes place every day as we navigate each decision about what to eat and how far to push the required routine. The negotiation can be exhausting, particularly because we are trying to strike a balance between making good decisions every time and letting Sam just be a kid. For better or worse, sugar is everywhere there is fun. Like cocktails for adults, parties and outings are often inextricably connected to “treats” especially in the summer. So how do we manage being judge and jury over all things carbohydrate?

The continuum of no is loosely based on experiential value and the ability to reasonably manage a food with insulin. Birthday cake: Yes. Ice Cream at a ballgame: Yes. Soup made by Sam from gummy bears: No. Eating without counting carbs? No. As Sam’s ability to negotiate gets more refined, finding good (simple) arguments to back up our decisions gets more difficult.

We were recently at a bonfire on a beautiful night with a group of friends and their children. The kids were laughing and running into the water which was a deep purple from the setting sun. There was a wagon full of marshmallows, chocolate bars, and graham crackers for making s’mores. The kind of scene you picture in your mind when you think of the ideal summer. As the little roasters tried out different techniques (marshmallow on fire vs. slow roast), I picked up the bag to look at the nutrition information. Even my perfect moments require thinking about diabetes. Anticipating that I was about to set a limit, Sam said, “Mom, this is a great snack – fire has zero carbs.”

I couldn’t agree more Sammy. Fire is a great snack. Have two.

Sam Meets With Senator Schumer to Talk About Diabetes

On May 7th, Sam and I attended a JDRF meeting with Senator Schumer to thank him for co-sponsoring the bill to renew the special diabetes project. Sam brought a bag of dinosaur parts and played quietly while we waited for the meeting. Earlier, I had told him that I was going to a meeting about getting more scientists to do research for better pumps and find improvements for people with diabetes. Sam wants to be an inventor so this was understandable to him. I told him he could come with me if he wanted. He asked me what I thought he should say at the meeting. I said, "Why don't you just say I am Sam and I am five years old" to which he replied, "Mom, that has nothing to do with diabetes."

We assembled around a small conference table. Sam sat on my lap holding his flying dinosaur creation. Senator Schumer kicked off the meeting by sharing a story about a family friend whose daughter was diagnosed as a teen. We then went around the room and when it was our turn I introduced myself and Sam. Unprovoked, Sam lifted up his shirt and showed the group his pump. "My pump is really important. The snap hurts though, but I am brave about it."

Afterwards, I took the newly minted advocate on a tour of grand central station and for dinner at the Oyster Bar - just the two of us. It was a pretty awesome Friday night.

He Said, She Said

Despite their shared role as muse to two parents that are prolific photographers, our children have almost no printed pictures that they can hold in their hands. Our home holds dozens of scrapbooks filled with pictures of far-off places, train tickets, museum stubs, and other tangible fragments of experiences that end abruptly the year Sam was born. By the books, it appears that I preserved the menu from a restaurant in the basque countryside more carefully than the paper with my child's footprints. There will be no “baby books” for their review carefully crafted so that they might one day know what foods they ate and what stuffed animals they loved. For each child I could manage only one thing: a list of language.

I am not sure what compelled me to do this, but I started writing down Sam’s words as soon as he said his first "mama." His book is a big wirebound sketchbook with nothing but the month and year written on each page and the notable words or phrases listed below. I let him scribble in it with crayons and I have terrible handwriting so it’s not much to look at. Talia’s is slightly more elegant and smaller, but follows the same concept. When I look at either of these books, I am completely transported in a way that is different than looking at pictures. Because the words are theirs, it’s like they have created their own book about their babyhood.

The same month Sam said, “mama” he also apparently said “big papi” (as in David Ortiz) and just seeing those words makes me think of him sitting on Jon’s lap watching baseball in our old apartment. It’s summer. He’s tiny, but fits perfectly in Jon’s arm. They look alike. He’s not wearing socks and I can picture his adorable feet. The sound of the game fills our house. The sound of Sam saying, “big papi” makes us laugh.

As the months progress, the words and the associated memories progress too: “Hero” (learned after Jon stopped to help victims of a car accident), “Nice time” (learned after an evening stroll for ice cream in St. Michael’s Maryland) and “big yellow moon” (learned as we changed his diaper under the night sky on a late night drive to Rhode Island). It’s particularly hard to look at October of 2006. The list has “baby pumpkin” “music” “chopsticks” and “hold hands” and then there is a two-week lag when Sam was diagnosed with diabetes and I didn't write anything down. The list continues with “hurts” “no test” “outside” “playroom” “hospital.” Like a line in the sand, those words fade and words apart from that experience begin again: “empire state building” “trewdriver” and “mommy, I love you.” The list helps me remember that at 23 months, Sam dreamt about swordfish biting his fingers at night (when we tested him) and that he wanted to know who made the trees and why we loved him so much. At age three, he asked Jon if his father got very small when he died and whether we become wooden toys when it is our time to die.

Sam is now almost five years old and the most recent entries in his book reiterate both the power that words have to make us laugh and to shape our memory. On a recent Monday, as soon as I got home from work Sam asked me if he could watch a show. Knowing that he had been with his grandparents all day I said, “I know you must have watched some TV today with grandma and grandpa” to which he replied, “I only watched two shows and the serving size is three.” Would Sam even know what a serving size is if that line had never been drawn or is he just a comedian?

The next day, Sam asked me why some kids moms pick them up from school. This came on the heels of Talia going into her "office" (aka the bathroom) and telling me she would "be back in a few hundred hours" so there's a chance they were working together to tear at my heart. Sam specifically asked if I would come pick him up. I had a meeting scheduled at that time and I explained that as much as I would love to I wouldn’t be able to do it. Later in the morning I decided to move some things around and I surprised Sam at school. When his teacher opened the door and he saw me sitting in the hallway he wasn’t surprised at all. He was so sure I would be there, that he had packed a present for me in his backpack. I took him to lunch at a sushi restaurant - just the two of us - and we talked. "Gyoza" "Is it night in Japan?" "I knew you would come today." I resolved to create a book of my own where I could glue the chopstick wrapper that we made into a triangle and write my notable thought for the day: "The serving size is being there."

Trick or Treat?

People frequently ask us if we "let" Sam participate in Halloween. We do. Like most four year olds it is one his favorite days of the year. He's very into "spooky" at the moment and we decorated our house two weeks in advance (including assembling a six-foot skeleton in a birthday hat). Armed with a list of carbs for every "funsize" candy we might encounter we wade through the synthetic cobwebs and trick or treat around our neighborhood. We keep track of every bite and give him the appropriate bolus (thanks OmniPod). Blood Glucose at the end of the night: 107 = no harm no foul. Sam did come up with an original costume which actually used candy as the artistic medium... marshmallow, bit o' honey, pop rocks, white face paint and ... well see below.

3:00 AM. Dad's Nightly Honor

I check Sam's blood sugar every night, without fail, at 3:00 am. Some nights I may have already checked at 2:00, and he's been low, so I give him a snack, juice (or both) and come back an hour later. Some nights I'll come in at 1:00, others I'll come back at 4:00, but I'm always there at 3:00. I've done this every night (except for a handful when I've been traveling for work) for the last three years. Many people ask me how I do it, how I function without ever getting more than two or three hours of consecutive sleep, ever. I've never once thought about it. Sam is my son. Caring for him is an honor.

It's almost always the same. The alarm on my Blackberry goes off, I get up, walk into the living room, get the PDM and lancet device, plus a small piece of paper towel to blot the blood drop. The next thing I do I cannot avoid. I check to make sure Sam is breathing. All parents will remember doing that for their newborn children. Sam is almost five and I anticipate checking him like this for a long time. Only once I see his chest rise and fall do I gently take his hand (many nights he extends a finger while still asleep), lance his finger (sometimes he'll flinch, but he never wakes), squeeze out a small drop of blood, and test it. Some nights he's high, so I give him a bolus (insulin). Less often he's within range, so I go back to sleep, perhaps to return in another hour. Some nights he's low, so I go into the kitchen and bring back the snack or juice to treat the low. I gently wake him, saying, "Sam? You need to wake up and have some juice." He wakes up, sits up, reaches sleepily for the juice box or crackers, eats and drinks what he needs to (almost dutifully), then goes back to bed. He's asleep immediately almost every night. On nights he doesn't go back to sleep he says, "Your bed?", "Of course," I say, and carry him to sleep with us. On nights he falls back asleep in his bed I go back into my room and go right back to sleep myself. I will be back, in an hour, maybe two. Sam is my son. Caring for him is an honor.

Back to school: In pursuit of literacy, monkey bars & other simple things

The night before Sam’s first day back at school, I picked out a smart outfit for him, hung his dinosaur backpack by the door, and attempted to get him in bed at a reasonable time. At 8:15 Sam began negotiations: “I need a glass of water,” “can I have a story,” and the perennial favorite (because he knows it won't be denied) “I think I am low, please test me.” Eventually, in the post arbitration silence, I packed all the diabetes supplies for the nurse to keep on hand for another year of school. I put the box by the door and sat down with a glass of wine and the book that I’ve been reading two paragraphs at a time for three months.


As soon as I cracked open my book I heard an urgent sounding, "MOM! ...MOM! I need to learn how to read before school starts.” Seriously? It was now 9 PM and I was unsure if I could teach him to read within the next 12 hours. Sam disagreed and offered a moderate protest, but I decided that I was NOT getting up again and either was he. I read two paragraphs of my book before I heard a chair being dragged across the floor.

Sam was standing on a chair reaching for a box of "learn to read" books. I was about to get angry at him, but it suddenly struck me as funny so I agreed to teach him to read. We opened book one of the 16 book series. Mat sat. Mat sat on a cat. Sam sat. Sam sat on Mat. And on it went. He was able to read many of the words and after six books I was able to convince him that he knows how to read well enough to go to preschool in the morning.

As soon as Sam was asleep, the pre-arranged conspiracy that he and Talia have went into effect and Talia woke up with 103.5 degree fever. I called the doctor and we agreed to take her in right after we droped Sam off at school.

The next morning, Jon obliged Sam’s request for banana chocolate chip pancakes (at a whopping 18 carbs each) and he was thrilled. I discouraged him (Sam, not Jon) from wearing his knight costume to school and got him to think he had a hand in picking the outfit that I had laid out. After getting dressed, Sam went into the bathroom and came out with a sopping wet head. He informed us that he wanted to look nice for school. The hair was matted to his forehead and he looked like George Clooney circa 1995. “I like it this way” he said and wouldn’t let us brush it. I had to save him from himself on the costume, but I could accept the hair.

Jon and I walked Sam (one block) to school each holding one of his hands and swinging him into the air periodically. He was wearing pants that had to be cuffed twice the last time he wore them in the spring and now barely touched the top of his shoes. He said hello politely to the headmaster at the door and was shy at first with his friends. We said hello to the parents of his friends and took a few pictures. Within minutes, he was off chasing his friends and trying (unsuccessfully) to swing across the monkey bars. It was a beautiful parenting moment filled with pride and sweetness.

We headed down to the nurse’s office to drop off the supplies (juice boxes, snacks, glucagon). She informed us that she couldn’t take care of Sam because due to a problem with the Health Department's fax machine she didn't have signed forms and the moment turned to anger and frustration. The suggestion that taking care of Sam was somehow dangerous infuriated me. I had to take the entire morning off and stick around to do Sam's glucose test and any other emergency treatment that might be necessary. Jon had to take the morning off to take Talia to the doctor. Sam was happy that the symbol on his coat hook and work drawer was an orangutan. Grateful for his ignorance about the forms, I wondered how long I could protect him from having to handle the added layer of stress and maintenance that diabetes brings to even simple things.

MIT Class of 2027: Candy Pigs will Fly

At four years old, Sam is very focused on his career ambitions. His plan is to be an inventor and to work part-time for a wizard. He is going to attend inventor school in Massachusetts (Jon told him his best bet for becoming a first rate inventor was MIT) and what he can't figure out how to invent he will ask the wizard to assist him (artificial pancreas maybe?). So far, Sam has had three ideas for inventions. The first is a machine that will make him, Jon, and me stay four years old forever so we can all live the same length life at the same time. If you are wondering where Talia will be, Sam's machine is going to make her two years old forever so he can still be her big brother. The second machine is designed to shoot candy into your mouth from anywhere in a room. You simply press a button and the candy will find its way directly into your mouth. The third machine he actually invented and it involved a catapult, a rubber band, tin foil, and a marble. Todays idea though is truly revolutionary. While eating a piece of ham (one of the few carbohydrate free snacks available to him) Sam said, "Mom, I am going to invent a machine that turns pigs into carb-free candy." Perhaps a minor in Cell and Molecular Mechanics...

Reese's Pieces in Court Street Fire

Yesterday afternoon Sam and I attended a showing of the 3D Guinea Pig movie at the big multiplex on Court Street and got a 4D bonus experience for our $24. The theater is two stories underground down a very long escalator. Halfway through the film, the screen went dark. No emergency lights came on and no announcements were made so we sat in the dark waiting for the film to start up again. The theater was full of children, including about 40 kids in yellow shirts from a local day camp. After a few minutes one of the counselors said, "everyone stay in your seats it's just a fire alarm." People started to get uneasy in the darkness using iPhones and blackberries to create some light. I subsequently decided it was time to leave with Sam as people started jockeying past us.

The elevators and escalators were shut off so I took Sam's hand in mine and we began to head toward the still escalator. I put him in front of me and asked him to walk up the escalator as fast as possible. I was right behind him (dragging a 17 pound stroller which in retrospect I should have left behind but at this point we still had no indiction that there was an actual emergency). When we got to the top, there was a fire between us and the door. It was hot and smoky. Flames were pouring out of the popcorn machine and spreading through the concession area. I could see a bottleneck at the door because people weren't making space once they made it outside. Sam and I ran through the smoke and made it out the door onto the street. Some kids were coughing, a few were crying. Sam was neither - just attentive. We walked a few blocks to get some distance from the situation and then watched the fire trucks come. Sam said simply, "I've never been in a fire with flames before." I said that I hadn't either and I hugged him and told him how proud I was of how calm he stayed and how he listened to everything I said. He then asked me when we were going back in. When I told him that we wouldn't be going back in today he was very concerned - not because we didn't see the end of the movie, but because we had abandoned the box of Reese's Pieces that we were sharing. This precious commodity was in danger. And then the questions... "will the snacks burn?... What will they do with them?... Who will eat them? I mindlessly answered these questions while thinking only about the feeling of his hand in mine - of leading him to safety.

Diagnosis: Parenthood (+/- diabetes)

Jon and I struggled to have our first child. Numerous indignities including a battery of tests and alternative treatments, and four miscarriages, eventually led us to schedule an information session on IVF. I learned I was pregnant the week before the appointment. Already accustomed to the disappointment of loss, Jon and I didn’t share our news with anyone for some time. About five months into the pregnancy we were on Nantucket during a particularly rainy week. We wandered into a yarn shop and Jon decided that he wanted to make a hat for our baby. Having never knitted before, but not wanting to be shown up by my husband I decided to make a hat myself. We picked out yarn and patterns and brought it back to the house where we were staying. While I was knitting my hat, I felt the baby move for the first time. In all my prior pregnancies I had never had that experience. I knew then that we were going to have this baby and that the baby would have at least one really nice hat made by his Dad.

My second child appeared out of thin air. My mother had recently been diagnosed with breast cancer and I was a busy mom of one year-old Sam, working full-time at a demanding job. After weeks of feeling nauseous, I began to suspect… that I had an ulcer from stress. I went to my now ex primary care physician (I had to break-up with him after the failure to diagnose pregnancy) who told me that if it didn’t get better soon, he wanted to do some tests. A few weeks later, I took a home pregnancy test. When it was positive, I was thrilled. We went for an ultrasound the next day. The technician started to laugh and asked me how far along I thought I was. I replied, “I don’t know 5 weeks?” She said, “try 16.5 weeks and a due date of New Year’s Eve for your little girl.” My father advised me to stop telling this story to everyone since this is not the kind of thing that happens to educated people. Nonetheless, I was overjoyed. It was going to be the shortest pregnancy on record. I left with an ultrasound of my daughter peacefully sucking her thumb. I was not afraid to fall completely in love with her at once.

When we were trudging through the maze of infertility and loss I never dared hope for two children. After Sam was born, I couldn’t imagine my life any other way. It was demanding, but the joy was indescribable. By the time we learned that we were expecting again, we felt like professional parents, unafraid of newborn babies, unafraid of the exhaustion and demands of the job. For us, parenting was proving to be pretty easy compared to the perils of pregnancy.

The news brought tremendous joy to our family and helped inspire my mother through her treatments. That autumn was filled with apple-picking, carousels, and all the best aspects of parenthood. We knew that soon our attention would be divided between Sam and our newborn baby. I was hyper-conscious of this magical time with him. He was funny and kind which is not always the case at that age. He was also very skinny.

I started to notice that he seemed excessively thirsty. I mentioned it to his pediatrician. I was now seven months pregnant, and scheduled for a routine glucose tolerance test the next day. She suggested I bring Sam to the lab to have one too. It was a Friday. I didn’t over think it and received my results the same day. I was fine. That Sunday we went apple picking and took the photo below.


On Monday morning, my husband called me at work to tell me that Sam had diabetes. He was 20 months old.

We were told to go home, pack for a week, and go to the emergency room. Which emergency room? Where? I was more shocked than upset. That would come later. I methodically went home where my father was babysitting for Sam and told him. He asked me if Sam would outgrow it. I just looked at him unable to conjure the word “no.”

Sam was sleeping. I started to pack some of his favorite pajamas, books, and toys even though I didn’t know where I was going. I suddenly remembered that I had “borrowed” a magazine from my OB-GYN’s office a few days before. It was an issue devoted to best specialty pediatricians in New York. I remembered reading that one of them was an endocrinologist. I frantically searched for the magazine, located it and called Dr. Barney Softness who was on the cover of the magazine. I told him that my 20-month old had just been diagnosed with diabetes. He told me to come to Columbia Presbyterian immediately and that he would meet us in the ER. Sam was still sleeping. He was so sick. His blood sugar was soaring. He was dehydrated and literally starving. I don’t know how I could not have seen it more clearly.

When we arrived, the nurses put Sam on an IV. He was terrified and took the entire course while lying on my pregnant belly for four hours. Neither of us moved. My mother, a diabetic herself since age 30 arrived in tears. I sent her away. I determined at that moment that this was not going to be a scene of tears and pity. I did not cry once. I knew that how we approached this on that first day would shape Sam’s perception of what was happening. My husband and I agreed within hours that we would never use the word “sick” to describe this to Sam.

In the morning we were moved to a room in the Children’s Hospital. Sam still had the IV in his arm and they required that he wear a tiny hospital gown. A legion of people began to come see us to teach us how to manage Sam’s care including lessons on what he should eat and how to check his blood glucose. We learned what could happen if we didn’t…I could not draw up an injection without bubbles in it. I became really angry at myself that I couldn’t do it. I became angry at my husband, who had experience giving injections, that he could do it. All the while, Sam was the light of the hospital wing, walking back and forth to the playroom, and bringing a smile to everyone he met.

After a few days they said we could go home. We refused. We weren’t ready. For sure, we couldn’t keep him safe. We stayed another two days. Every minute of these days is burned into my mind – cutting fruit, folding clothes, taking showers, watching Elmo in Grouchland repeatedly. The mishaps with the injections continued including one incident where Sam wiggled off my lap and Jon stuck me in the leg with the needle.

It began to sink in that time had a new meaning. We could never relax. It was always an hour since or an hour until some action on our part was necessary to keep Sam healthy and safe. The reality of counting every single gram of carbohydrate that went into our son’s mouth and that we would be required to test his glucose 8-10 times a day including in the middle of the night started to take shape. The idea that he could develop devastating complications if we didn’t manage his care well was overwhelming. All of our lives had completely changed overnight. Diabetes was never going away. This was a crisis without end.

The hospital held a Halloween party for all the kids, some of whom would have been happy to have diabetes. They gave out costumes. Sam was piglet – a character known for being small but virtuous and facing his fears. Someone took a Polaroid. This picture breaks my heart still.



The first night home was terrible. We called the doctor at 2:30 AM because Sam’s blood sugar was 250 and we didn’t know whether to give him an injection or not. The doctor was not as patient as I would have liked in informing me that this is not an emergency situation. To me, the entire situation was an emergency and I could not see how we were going to live under the constant strain.

The next morning we took Sam to the Metropolitan Museum of Art. I suppose we were trying to prove to ourselves that we could still live a normal life despite having to lug around all of Sam’s supplies. When it came time for lunch, we ate in the courtyard with the Tiffany windows. Sam loved the purple grapes. I wondered how many carbs were in a bunch that big. I drew up his injection and felt as though every person in the room was watching us. A few were, but most weren’t. Sam didn’t flinch and spoke for days of the experience. The inconvenience of the injections didn’t seem to bother him. Ever. This kid had a strength of character that far exceeded anyone’s expectations.

He learned to say the words insulin, injection, carbohydrate, and pharmacy well before his second birthday. Diabetes and all of its accoutrements became part of our life. The top of our china cabinet became diabetes central. We now had syringes, lancets, alcohol wipes, test strips, ketostix, juice boxes and glucagon in plain view. I couldn’t return to work because we weren’t comfortable leaving our babysitter with this new responsibility. I used the bulk of my paid maternity leave before our daughter was even born. Sam only weighed 27 lbs, and the insulin doses were so small that even the pediatric needles were too big to be accurate. The first marking on the needles was .5 and most of his doses were closer to .25 so we had to visually guess. There were multiple incidents of potential dosage mistakes as our amazing babysitter was learning. Then one day, while Jon was a few hundred feet underground touring the City’s third water tunnel (and thus unavailable) I ran out of syringes. Sam had just eaten a big breakfast. He needed his insulin. I ran to the corner pharmacy in a panic. How could I have let this happen? I was sure there was another box. He depended on me. The pharmacy didn’t have any. Either did either of the chain drugstores in the immediate vicinity. I was the worst parent ever. I sat down in the pharmacy and cried inconsolably all the tears for the prior two months.

On New Year’s Eve, Sam came down with a stomach flu and for some reason couldn’t take any insulin without plummeting his blood glucose. Under these conditions, I was terrified to leave Sam – even for a few hours – with my parents to have the baby. It would be the first time since his diagnosis that either Jon or I was not present. Shortly thereafter, I came down with it. I had passed my due date and was so dehydrated from the flu that they suggested I get an IV. Simultaneously, Sam’s doctors determined that he needed IV fluid too so Jon stayed with him in the ER in the same hospital. When I got down there, Sam was just hanging out with his IV singing songs. I was having minor contractions.

Our daughter Talia was born at six in the morning. Everything about her entry into the world was simple and straight forward. This was a considerate kid. She was lovely in every way. After the initial evening with my parents, during which they successfully caught and managed a middle of the night low blood sugar, Jon took Sam home. I was alone with her a lot and the secret fears that I had about having used up all our love on Sam dissolved.

Sam took to having a baby sister pretty well. Logistically, Jon and I had to divide and conquer. Jon did all the nighttime testing of Sam. The official reason for this was because Talia was nursing and I was tending to her. The real reason, unspoken between us, but known to both of us, was that I was (am) terrified to walk into his room at night and pick up his limp hand and wait the few seconds for the number to register.

As the months went on, the chaos of having two kids seemed to become mostly just that and not centered on diabetes. We started to meet other parents, research emerging technologies, and even to hope for a cure. We became advocates and fund-raisers. We put Sam on a wireless insulin pump called the OmniPod. It changed everything. I felt I could return to work and I did. Our babysitter (and Grandma and Grandpa on Mondays) calls me every few hours to tell me test results or confirm an insulin dose. I make no apologies about answering my phone no matter what I am doing. Most people understand, but some don’t and I try to ignore their disapproval.

When it was time to apply for preschool we could only look at schools that had a full-time nurse (a.k.a. private school). There were only two in our neighborhood. Thankfully Sam was admitted to one and we began to navigate the maze of school health. Jon or I had to go to school with him for a full month before the nurse was comfortable using the insulin pump and the orders met everyone’s legal concerns.

Sam’s class has a “meeting” each day and at one of these gatherings Sam showed all the kids his pump. His teachers informed us that he said, “This is my pump. It keeps me healthy and gives me insulin.” The kids checked it out and satisfied their curiosity and then they moved on. He keeps an inactive one in his work drawer at school “in case anyone wants to learn about it.” Sam is a natural teacher and has taught all of us to address each day head on. Two broken arms, a root canal, a shaving "incident" and dozens of skinned knees later we were surprised to learn that diabetes does not give us an exemption from all the other injuries little boys can encounter.

At every turn, this diagnosis presents extra challenges but we have come to see them simply as parenthood.

Spring for a Cure

On Thursday evening, Jon and I attended JDRFs annual Spring for a Cure gala at Metropolitan Pavilion. The highlights: lemon basil margaritas, scallop ceviche, eileen's cheesecakes and a thousand people at $100 each raising money for Juvenile Diabetes.

We were actually excited for a night out this year. The first time we went to SFAC Sammy's diagnosis was still kind of raw. There was an exhibit at the event made of insulin bottles that still makes me wince when I think about it. If it wasn't our first night out it was the second or third at most and we called every hour.

A few months later we got our first team together for the Walk to Cure Diabetes. When I got out of the subway at Battery Park and saw thousands of people with their team shirts on I immediately started crying. I remember saying, "Oh my God. All these kids... all these families have diabetes."

On the days between the Walk and Spring for a Cure, I am not overly focused on these other families. Sam is the only kid in his school with diabetes so it's not that common for us to talk to other parents in this unique language. When we do encounter another family there is often an immediate connection. Jon says it's akin to the big blue whales that travel the oceans alone until suddenly they find one of their kind.