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.

IMPORTANT

A good friend and colleague recently lent me a book titled, “Breakthrough—Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle.” I’m only about 20 pages in to it, managing only a few pages a day as I ride the subway (and oddly holding the book up to show off its cover—subconsciously hoping that others will see and somehow understand why I’m reading this book). As its title connotes, this book chronicles the discovery of insulin as a treatment for type 1 diabetes. In 1919, diabetes was a terminal illness, with most patients surviving no longer than a year after diagnosis. A fascinating story awaits me, one that is deeply personal, as my son Sam is alive today only because of the incredible medical advances made less than 100 years ago.

When I arrived home tonight I found a familiar package waiting—one we receive every three months. As I opened this package I was immediately struck by a recent labeling change to its contents. A white, padded, insulated envelope now said, in white letters inside an orange circle,

IMPORTANT

INSULIN

ENCLOSED

I was immediately taken aback—how to read this? Is it missing critical punctuation, so that I might read it, “IMPORTANT—INSULIN ENCLOSED,” or, as written, “IMPORTANT INSULIN ENCLOSED.” Is it important that there is insulin enclosed, or is the insulin enclosed important?

In 91 years we’ve advanced to a world where this life-sustaining hormone arrives at our door every three months. In a contemplative mood, I examined the package a bit more. “FRAGILE, HANDLE WITH CARE” is a common warning, but means so much more in this context. “REFRIGERATE IMMEDIATELY” wouldn’t have been possible in 1919, nor would “UPS NEXT DAY AIR.” This package was addressed to “SAMUEL DICKINSON, C/O FATHER JONATHAN DICKINSON.” I know this means the package is for Sam, to be cared for by me, but I could only read it one way—“Samuel Dickinson is in the care of his father, Jonathan Dickinson.” It’s incredible that in less than a century we’ve transitioned from diabetes being a terminal illness to where Sam’s life is possible due to something that arrives in a cooler bag by next day air. It is essential. It is, to many, a miracle. It is, quite simply, important.

Promise Ball - Thank You Number...

Our family attended the 38th Annual Promise Ball to benefit JDRF at Pier Sixty. While Talia didn't get to go to the gala, we did let her get all dressed up too before we took her to her best pal's house for her first sleepover. The event was beautiful and raised over $1.5 million toward a cure. Sam participated in the Fund-a-Cure auction which goes directly to the artifical pancreas project. Each child has an auction "lot" which start at $50,000 and decrease to $500. He was given the sign for $5000. The auctioneer interviewed him briefly and then asked the audience to raise their panels to fund-a-cure at $5000 each. It was like wildfire - "Thank you number 126, thank you number 12, thank you number so and so" 26 TIMES! Sam helped raise $130,000 for the artificial pancreas in less than two minutes. He then proceeded to dance the night away with some 9 year olds that were more than twice his size.

About Sam

Sam's family and friends are proud to be joining him for this year's JDRF Walk to Cure Diabetes. Please help Sam to reach his fundraising goal.

Hero defined

he·ro
Pronunciation: \ˈhir-(ˌ)ō\
Function: noun
Inflected Form(s): plural heroes
Etymology: Latin heros, from Greek hērōs
Date: 14th century

1 a: a mythological or legendary figure often of divine descent endowed with great strength or ability b: an illustrious warrior c: a man admired for his achievements and noble qualities d: one that shows great courage

What does a hero look like? Give it some thought. For most people, a certain image comes to mind—someone who's big and strong, prone to acts of selfless bravery, perhaps even tights and a cape. In our family, we taught our kids the word "hero" when they first started to notice firefighters. As the FDNY trucks rumbled down our street, sirens blaring, the kids would wave and call out, "heroes!" (a result of raising kids in post-9/11 New York).

I have a hero. My hero is a little over three feet tall and weighs about 40 pounds. My hero is five years old. My hero is the bravest, strongest, most noble person I will ever know. My hero is my son Sam.

In June I celebrated my sixth Father's Day, and my fourth as the father of a child with diabetes. I spent a lot of time that day thinking about being a father, about the job I'm doing and the good fortune I have to have my children. Fatherhood seemed pretty straightforward to me when Sam came into the world—do everything in your power to protect and care for your children, teach them everything you know, and make sure you have fun along the way. Oddly, the last four years have proven that this simple approach works, even (or perhaps especially) given the challenges of diabetes—I've done all I can possibly do to protect and care for my children, I'm doing my best to teach them well, and we all have fun (almost) all the time. Caring for a child with diabetes is all-consuming. It's exhausting. It's stressful. There is not one second of our lives when we're free from worry. These are all tolls I'm honored to pay to have Sam as my son. I kiss him goodnight every night (and again several more times throughout the night) and see his smiling face every morning, which makes me pretty certain I'm the luckiest father in the world, because Sam is my hero.

A few weeks ago, we learned that Sam likely has celiac disease (a confirmed diagnosis is a few weeks away). This news has taken quite a toll on me and Rachel, as we go through the motions to process it all and learn how to manage another significant health challenge. We're feeling pretty defeated, to be honest—having rallied for the last four years, this one has us against the ropes. The one thing that props us back up is knowing how the one who is really affected by this will handle it—who better to tackle another challenge than my hero Sam.

On Sunday, October 3, our family and friends will walk with Sam in JDRF's Walk to Cure Diabetes. This year, our fourth annual walk, may be a little more emotional than past walks, considering our recent health news. We'll be joined by thousands of other friends and families of kids like Sam (all heroes). Leading our team will be someone who is endowed with great strength and ability, an illustrious warrior admired for his achievements and noble qualities, and one that shows great courage, always. Sam is my hero.

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.

Walk Award Ceremony Highlights (with SCD bonus Performance)

On Tuesday, Jon, Sam and I attended an award ceremony honoring the teams that participated in the 2009 Walk to Cure Diabetes. The combined efforts of the families and teams across the country raised over $3 million for diabetes research. This was our third time attending this event, but the first time we brought Sam. Part of the reason I felt that we could bring Sam to the awards is because the tone of the evening is one of shared accomplishment - not sadness. While Sam understands the difference between veins and arteries, he doesn't necessarily comprehend the difference between $10 and $10,000. To him, we met our goal (and he got a trophy). Explaining the goal has it's own challenges. The night before he had asked me to tell JDRF that he would like to change his pump every thousand days instead of every three. We discussed how JDRF was working on technologies that would make diabetes easier and had a pretty scientific conversation about the pancreas. Help out the pancreas = goal. Sam's understanding of the body is amazing to me, but not as amazing as his positive and beautiful spirit.

Note: We believe that unique "move" in the video is Sam's air guitar.

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.

Thanks from "Sam's Friends"

Thank you for helping us exceed our fundraising goal for the third year in a row. Most of all thank you to those who walked with us (Erinn, Paul, Laura, Madelyn, Liz, Dave, Deirdre, Andy, Ruth, Jacob, Sarah, Lily, Alex, Matt, Donald, Raleigh, big Sam, Sharon, and Grandma). It was a very special day.

Fundraising

Awkward, intimate, inspiring, imposing, shameless, gratifying, necessary.


This exercise raises a real internal struggle for me each year. I am amazed by the generosity that friends and strangers have shown towards this cause on Sam’s behalf. The former colleagues of my mother who annually solicit $5 and $10 donations from their colleagues, friends from childhood, people we know casually from our neighborhood, friends of friends, parents of friends, people who are exceedingly generous year after year, and people who just don’t have to support us, keep on doing it. Every year, I feel as though I can’t possibly do this again and then at the end I am so buoyed by the support and the thought that maybe our efforts made a difference.

I don’t know the origins of walking for a “cure” as a fundraising mechanism. Like everyone, I get a lot of emails like ours and so I am sympathetic to the over-saturation of important causes. We have adopted a few that we support in addition to JDRF. Some we have a personal connection to (breast cancer, ALS, pediatric hospitals) and with others the only connection is that the person we know cared enough about someone else to participate. All the emails begin the same way: “I am walking for my mother, my cousin, my husband, my friend, my child, because this beautiful human being got some crappy disease that they didn’t deserve.” As much as I want to reach our goal (the 2007 and 2008 circle of excellence awards for raising over $10k are hanging in Sam’s room with an obvious spot for 2009), the actual walking is a really important part of this annual effort. The shirts that we make for walk day all say, “I am walking for Sam Dickinson, Age __” and Sam’s says, “I’m Sam.” As he passes, people say “Go Sam!” or “You can do it Sam!” and it makes me think that his future is hopeful. You CAN do it Sam. You can live a great life.

Jon’s father lived with ALS for nine years before his death in 2002. His final years defined courageous. After he was completely paralyzed and lost his ability to speak, he continued to write his syndicated column using only his eyes and a special keyboard. He was nominated for the Pulitzer Prize for those articles. Twice. In one particular article he wrote about all the small joys of life and I distinctly remember the line, “Walk, Oh, do walk when you can.” Even though our fundraising effort is for JDRF, when we “walk” I always think of him and of what a privilege it is to be healthy. Sometimes he would write about day to day events in the life of his own family. I can imagine how he would report on this event and perfectly capture the spirit of walk day – especially the powerful imagery of families spilling across the bridge in support of their children. I wish he had known Sam and Talia and that he could write them a story about this day.

Walking is freedom and power. After a two year period that included open heart surgery and breast cancer, my mother found the strength to do this walk for Sam. Her walk each year has nothing to do with fundraising and everything to do with the power of love. It seems almost possible that this kind of power might crush diabetes. If only.

The truth is that Jon and I believe in science. I want science to make diabetes into some obscure thing and I want it to happen quickly. It will cost money. Which is why, despite the awkwardness of fundraising we do it year after year. Aside from providing the diligent care and attention that diabetes requires this is really the only thing we have the power to do. We are humbled by and grateful to all who have helped us do it. This Sunday, we will walk for Sam and for the dignity and peace that every human being deserves. We love each and every one of you who “walk” with us every day in this journey to create a better future for our son.

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.