Speech to JDRF Researchers and Scientists

I was invited to be the keynote speaker at the International JDRF Fall Retreat for researchers and scientists. It was one of the most difficult speeches I have ever given. I was very taken by the emotion I felt when I stood up to give the following speech:

Good morning. Thank you for inviting me here to speak to you today. My name is Rachel Dickinson. My son’s name is Sam. Sam. You are connected to Sam. Sam is connected to you. You are so important to Sam and to me that it seems strange that we have never met and may never meet again given how much I want for you to succeed.

There is a children’s book by Leo Leoni called Frederick about a mouse that doesn’t seem very busy as the other mice prepare for winter. As they gather food, supplies, and so forth Fredrick gathers up the warmth, colors and sounds of the waning summer. Eventually, their stores run dry and the mice turn to Frederick to share his supplies. It is cold and grey and the mice are hungry. Frederick uses his memory to make stories that sustain them until the spring. Maybe you can put Sam’s story away for a time when you need it in the future in case your stores ever run dry about why you do what you do and how much it means to everyone affected by Type 1 diabetes.

I have two young children. Each day, I see new traits in them that are familiar in various ways. The determination in my daughter’s blue-grey eyes the exact same color as my husband’s. The way my son walks down the street with Harry Potter in front of his nose tripping over roots because he is happily lost inside of a book – it's me in second grade. Long eyelashes that scrape the insides of sunglasses, a love of nature, a wedged pinky toe, a sense of humor, a talent for puzzles or music – these are some of things that make these particular kids mine. These are the familiar things that make us family.

Diabetes was always familiar to me. My mother has had diabetes since I was a child. Her brother, who suffered terrible complications including being a double amputee at the end of his life – the end being in his early fifties – had diabetes. Various grandparents acquired type 2 later in life. Still, nothing could prepare me for the diagnosis I received on October 23rd 2006, Sam had diabetes. He was 21 months old. I was 7 months pregnant with my daughter, Talia.

Could I have prevented this? Was it related to the coxsackie virus he had had a few weeks earlier? Which toy did I let him put in his mouth that caused the virus that ultimately provoked this reaction in his pancreas? It’s a joy to take credit for a child’s wonderful traits, but my smart, beautiful, happy boy had obviously inherited this from us too. Will Talia get diabetes? Or the children’s cousins? I don’t know, but maybe one day you will. Talia asked us once as she was getting her annual blood draw as part of the Trigr study for siblings “when she will get diabetes” and will we be as worried.

JDRF is an amazing entity and has done so much for us personally and for our community. I have a friend whose daughter has a very rare syndrome – maybe a thousand kids in the world have this chromosomal abnormality – and she started a foundation and they just received their first 50K grant. They started a walk in honor of their daughter Sydney – one family, maybe $100k to date. Hope for a thousand families, but really it puts into perspective what it means to have this kind of infrastructure at work toward a cure. JDRF has spent $1.6 billion to date. How much will it cost? Will I still be doing the Walk to Cure Diabetes in 20 years? Going to the 60th Promise Ball? Lobbying the FDA? I expect so, but I hope not. What does a cure look like? For me, it looks like less worry. Less testing in the middle of the night, less disruptions in the classroom. Less time for Sam feeling badly from being high or low (although you’d never know it because he never complains). Less chance of devastating complications. Prevent? I can’t prevent it for Sam but maybe for Talia or for their children. Treat? Absolutely anything and everything that moves this ball forward to make life easier for Sam gets my support. The new test strips that suck up the tiniest bit of blood? Bravo. Wireless insulin pump (which by the way my mother was also on until she recently turned 65 and medicare coding has determined isn’t a real insulin pump because it’s not a durable medical good based on the disposable pods) great. Connect the pump to the CGM even better, and artificial pancreas even better than that. Reversal? You know better than me if we can re-engineer the immune system but if you think it’s possible I’ll walk for you. Every donation we get – all of the kids friends – preschoolers and kindergartners walking 3 miles on September 30th – they are doing it so you can help Sam live a long life – maybe even one day free of diabetes. This connection between you and Sam is strong.

Our family has a blog about our experience living with diabetes and I wanted to close by reading a post that my husband wrote that seems like a good fit for this team. It’s about insulin and developments in research. And it’s about us. It’s called “Important” - here it is:

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.

Jon is Running the NYC Marathon to Raise Money for Critical Research

If you missed the walk but still want to help there's...the run. Jon has been training with every ounce of himself to run the NYC marathon on the JDRF team. He's never run more than a few miles before this year and each year we watch the runners going down 4th Avenue and for the past few Jon has said "I am going to run it for JDRF" and now, he is. Last week he ran from Park Slope after coaching Talia's soccer game to Riverdale and then found himself ending his 20 mile training run at the Morgan Stanley Children's Hospital on 168th Street where this journey began for us in October 2006. He wasn't intending to end there but was drawn to it. We need to raise a minimum of $3500 for this race so if you're inspired to help click below and make sure to come out and cheer on November 4th.

Click here to sponsor him:
RunforSam

Thank You to All who supported the 2012 Walk to Cure Diabetes

We are so grateful to all of our friends and family that came out to walk or helped us reach our goal. We raised over $10K for the sixth year in a row. Thank you for being in our corner.

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

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

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

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

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

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

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

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

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

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

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

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

Double Dose of Rock Star

Sam and Nick Jonas talk about diabetes, Children's Congress, OmniPod and of course playing the guitar.

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.

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.