41st Annual Promise Ball

Sam and Michael Strahan rocking it on stage in their tuxedos.

1st Place in the Un-Marathon

In light of the tragic losses related to Hurricane Sandy, Jon and I completely support the decision not to hold the 2012 ING Marathon. After months of training and a feeling of obligation to all of those who supported our JDRF fundraising efforts for the race, a sense of personal obligation, and above all a need to fulfill his obligation to Sam and Talia, Jon ran his own 26.2 mile loop in Central Park on November 4th. We cheered for him and thousands of other New Yorkers running for charity or other reasons that needed fulfillment. Sam presented him with a handmade medal at the finish line and Talia made a plaque that said, "Go Dad, Go. You did it! You ran the marathon." Congratulations, Jon.

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.