Promise Ball at Cipriani Wall Street, New JDRF Video Featuring Sam Released

On November 17th, JDRF hosted the 39th annual Promise Ball at Cipriani Wall Street. True to the promise I made last year, I allowed Talia, now age four to attend her first gala. She was so proud to be a part of the night and took great care in putting on her pearls and polished shoes. Sam's best accessory is always his smile whether in a tuxedo or a peanut butter covered T-shirt, but both kids looked adorable and it was a very special night.

After a stellar performance by the cast from Jersey Boys there was a program honoring Bob Obernier, a long-time supporter of JDRF. I was both moved and disheartened listening to testimonials from his family and other affected families that were interviewed for this presentation - people whose children are now in their twenties -- and still working (and waiting) for a cure. It made me wonder if there is a post about the 59th Annual Promise Ball in my future and pray that the answer is no.

During dinner, JDRF unveiled a new eight minute video (link below)by Bird's Nest Productions that Sam and I participated in last year. The room was quiet and when the screen came to life the video opened with "my name is Sam Dickinson. I am from Brooklyn, NY and I have diabetes." The first image in the film is of Sam sitting in his room in a Scooby-Doo T-shirt with a Mr. Potato head poster in the background. He is confident and matter-of-fact. A small child, but wise beyond his years. I had to choke back tears as the video went on showing clips of Sam scaling a rock wall on his fifth birthday and playing in the surf on Nantucket. You can also see Jon holding Sam as he changes his pod and does the dreaded "snap" when the cannula enters his skin. At one point, he explains that his "pancreas cannot create insulin."

The kids chased trays of hors d'oeuvres, danced to the band and ran around the beautifully decorated space. Finally, Sam and six other children with Type 1 Diabetes also participated in the fund-a-cure live auction and raised $496K for the artificial pancreas. You can see him with Ron Darling, the former Major League Baseball player and auction MC below. Ron Darling's foundation actively supports research toward a cure for Type 1 Diabetes. As always, we were impressed by the dedicated staff of JDRF and grateful for the generous support of everyone in the room.

Sam and Ron Darling during Fund-a-Cure

Click here to view the video http://www.youtube.com/embed/ETwiV-7-nag

TKO for Diabetes

Sam, Sugar Ray Leonard, Cat Greenleaf, and Gracie (asleep on top step) talking about JDRF on the Stoop.

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.

Four Generations Walk to Cure Diabetes

Great Grandpa Joe with three of his four great-grandchildren

For the fifth year in a row, our family team, "Sam's Friends" participated in the annual Walk to Cure Diabetes to raise critical research funds for JDRF. We are proud to be able to say that we met our goal and we are grateful to the friends, family, and friends of friends that supported us.



This year the shirts had a star wars theme and text started out with "It is a period of great scientific discovery..." and it is. The backs of the shirts always say, I am walking for Sam Dickinson, Age X and then we make one for Sam that says, "I am Sam." People say, "go Sam" as he passes. This year, we made Talia a special shirt with a picture of Princess Leah and the words, "I am Talia and I am walking for my brother." Go Talia... May the force be with you both.

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

Sam Gets to the Point on NY Nightly News with Chuck Scarborough

Click below to view on NBC's site as the above video cuts off the far right of the screen:
http://www.nbcnewyork.com/on-air/as-seen-on/6-Year-Old_Diabetes_Advocate_New_York-126251978.html

Justice

Sonia Sotomayor met with delegates from JDRF's Children's Congress to talk about her life with diabetes. In simple and compassionate terms, she told the children how confusing it was when she was diagnosed because she had never seen her mother cry. She was remarkable. The children were remarkable. Sam, who probably doesn't know how cool it is to meet with a member of the Supreme Court listened attentively in the front row. He wanted to know if she was part of the "Justice League"... "sort of" was the best answer for the moment. Read more below:

http://www.washingtonpost.com/blogs/reliable-source/post/sonia-sotomayor-discusses-her-life-with-diabetes/2011/06/21/AGTDVqeH_blog.html

Children's Congress

Spending three days with 150 families that live with Type 1 Diabetes was a unique and inspiring experience. There are no strangers among parents that are all awake at midnight, three and six AM each night or children that share the experience of pricking their fingers ten times per day and are tethered to their insulin pumps at all times. The kids had a great time together and Sam made a friend named Emily, (age four) that he spent most of the time with. I was struck by the poise of some of the older delegates and I know that Sam is developing that quality already as an advocate and as a human being. It goes without saying that the kids did an incredible job of telling their stories to Congress, and I think the FDA took notice of the event. In addition to the delegate families, Kevin Kline, a parent of a child with diabetes himself, testified at the hearing and numerous athletes, scientists and other familiar faces lent their support. During one of the sessions, Sam got up to the microphone and asked Kendall Simmons, an NFL player who has diabetes, how diabetes affects his game.
My favorite photo though is the one of Talia at the top of this post with all the younger delegates who somehow manages to not only be included, but to be at the center of it all. Crystal Bowersox (pictured with Sam and the other New York delegates) of American Idol wrote an original song called "Promise to Remember Me" that the kids performed on the steps of the Capitol. You can see the moving performance and some highlights from CC11 below:

SCD Goes to Washington

Sam will be going to Washington, DC as a delegate from NYC to JDRF's 2011 Children's Congress. 150 Children from around the country have been chosen to remind Congress and the Administration of the need to support research towards better treatments and a cure for Type 1 Diabetes. The young advocates will meet with legislators and participate in a Senate hearing on Capitol Hill. Please view Sammy's delegate video to learn more.

http://cc.jdrf.org/delegates-2011/ny/samuel.php

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.