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.

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

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


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

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

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

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

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

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

MIT Class of 2027: Candy Pigs will Fly

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

Sam's First Solo Test

Reese's Pieces in Court Street Fire

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

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

Diagnosis: Parenthood (+/- diabetes)

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

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

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

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

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


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

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

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

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

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

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

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

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



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

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

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

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

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

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

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

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

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

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

Spring for a Cure

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

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

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

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

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