Moving Up

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A few weeks ago we celebrated Sam’s “moving up ceremony” from 5th grade to middle school.

We had been looking forward to this day for several years, of course, and so I awoke that morning with many thoughts. I was primarily concerned with the logistics of getting everyone to the right place on time with the appropriate clothing, food, and medical equipment. 90 minutes later, I was out the door with my 2 older sons on my way to drop them at school and save seats in the auditorium. I scurried in with a friend and we remembered the day our children started kindergarten. She reminded me that at that time I was shuffling my feet, hunched over from my C-section with Leo only a few weeks before.

As I entered the auditorium, it was hard to believe this was Sam’s final assembly in elementary school! It wasn’t that time had flown by, or that it seemed like yesterday when they were so little. Not at all. It was more like an endless series of storms mixed with brief periods of calm. Too many significant medical diagnoses, fluky traumas and unexpected surgeries, not to mention the emotional backlash of it all… But enough of that. I forced myself to shut out these thoughts and smile, to be “in the moment.”

I looked around remembering Sam’s kindergarten assembly. Back then, I still had a busy pediatrician’s schedule. Although both the hospital and practice knew I was unavailable for the morning, the burn unit somehow managed to find and page me. I was so aggravated at the time for needing to shift my focus away from my son’s first school performance. Years later, here I was in the very same auditorium, the lights began to dim and people started to sit down. Other than focusing on Sam, my only concern was that my husband, his parents and my parents had not arrived. Where were they? I realized my parents were probably battling bridge traffic, but Adam was never late for these events and his parents (who had flown in from Florida the previous evening) were ready since 7am. Somewhere between the national anthem and the principal’s speech they arrived and took their seats. “I had to drive back home for the gluten free cookies so Sam could eat afterwards”, whispered Adam. I grimaced, but I also understood. Sam would have been very upset. But they were right there on the table! How hard was it to remember???

Back to the ceremony, where we watched the kids perform skits, songs, remembering their years at the school. It was beautiful. The video montage featured each student’s class photo next to a baby picture and hundreds of candid photos of their years together.
There he is, my Sam… an intense boy. He has always been active and spirited with a wry sense of humor, fun-loving but not light-hearted. In preschool he was described as an “old soul” in a young body. Perhaps he somehow knew that by the age of 9 he would have a list of chronic medical diagnoses half his number of years. If you saw him on the soccer field or in a heated discussion in the classroom, you would never know his challenges. Strong and vibrant, compassionate for others, I am so proud of him. I loved watching the pictures of him with his friends, growing up in this school. All good until that picture of the 1st grade Author’s Tea. My stomach did a little flip when I remembered that day. Each student shared their biography which, among other things, included one important wish. Most wished for world peace or an end to poverty. Sam’s one wish was that his brother Leo didn’t have diabetes. Who ever thought at the time that he would end up having diabetes as well? … Again, I forced myself to snap out of it. I looked at him in the front row (he and his friend always manage to be in the front row for these ceremonies). He looked so happy , handsome and ….was that another yawn Sam? How many times have you yawned in the last five minutes? And, why are the two of you smirking up there?

Afterwards we went to the post-ceremony reception where we greeted each other, thanked the wonderful teachers and took many photos before getting on with our day. My immediate responsibility was to pick up 20 pizza pies for the kid’s pool party. A brave mother had invited all 67 kids to her house for the afternoon and I was going to help chaperone.

The kids had a blast at the pool party. It was a nice way for the parents to spend the afternoon as well. For me, it was a lot different than rushing back to do a consult in the burn unit. Don’t get me wrong-I would give anything, work anywhere for Sam to not have diabetes. But in this situation I was glad I could help him figure out the carb count for his food, make sure he had his lactaid pills and gluten-free pizza and protect his insulin pump from the heat and water. He probably could have done well enough on his own, but this was a special day for him. He had so much to think about all the time. I wanted to simplify things so he could just have fun.

Then, soon enough, it was time to pick Leo up from school, prepare dinner, and get the boys out in time for their evening baseball playoff game.

During the baseball game, I was able to relax and reflect on the day’s events. It was a great day for Sam and for all of us. As a bonus, the boys won their game, landing a spot in the championships. And I was a parent of a middle schooler. How did that happen?

Looking for trouble…

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“Stop being so clinical.” I hear that a lot, from my husband nonetheless. Of course, since he is not a physician himself, he appreciates it more when I call in eye drops for our kid’s conjunctivitis (on vacation in North Carolina) or save him from hours in an ER waiting room for something I can treat. Even before my own kids were diagnosed with celiac disease or diabetes, people would ask me, “Are you more paranoid about your own children’s health?” For the most part, I think that I am pretty relaxed. However, I do worry about things that non-pediatrician moms wouldn’t even know about.

“Why look for trouble?” That’s another line I hear often. Intellectual curiosity is central to the practice of medicine. “Medical Student Syndrome” refers to the hypochondria that occurs when 2nd year medical students study pathology and begin to worry that any symptoms they are having are part of some esoteric disease, like those seen on an episode of House. Once, when I returned from spring break with a stomach illness caused by a parasite, the student health clinic worked me up for an immunodeficiency that could be related to it! Of course, there wasn’t one. But, you get my point.

As a physician, hearing a potential diagnosis about a loved one can send your mind to dark places where it loses objectivity. You quickly work out a differential diagnosis, you try to stay positive, but you won’t stop worrying about the worst case scenario.

So, how does this curiosity translate to parenthood? We still laugh about the time I called my favorite pediatric ophthalmologist because my son was not tracking my finger or smiling enough for a 9 week old. The doctor reassured me that this did not mean he was blind. My middle son, Ben, cried so much from colic and reflux that we had him sleep in a car seat in his crib for the first 5 months of his life! His legs were so stiff from his constant crying that I brought him to a neurologist to evaluate his tone and reassure me that this would improve over time. I needed to hear that it wasn’t a neurological problem!

A few months before my oldest son Sam’s 5 year annual checkup, I noticed his belly protruded more after meals; he was small and he sometimes complained about belly pain. At a recent conference I had learned that celiac disease can manifest in many different ways. I never really thought Sam had it. I just felt compelled to make sure he didn’t. I needed to get the bug out of my head. We waited until his checkup and then asked his doctor to send the lab work for celiac titers along with the routine tests. He agreed begrudgingly after joking “only because you are a pediatrician-I really doubt he has it but I’ll send it.” Sam’s celiac markers were off the chart and a small intestinal biopsy confirmed that he did indeed have celiac disease. Further testing showed that Ben had it as well.

Celiac disease is an autoimmune disorder characterized by gluten intolerance (reaction to wheat, barley, and rye). The impaired absorption leads to a wide range of symptoms and the development of other diseases. A gluten-free diet prevents these but it requires strict, lifelong adherence.

Sure enough, this diagnosis sent me into a tailspin. What began as an academic question was now staring me in the face! Waves of panic washed over me. Although I wasn’t hysterical, I struggled to wrap my brain around our new reality. I was 6 months pregnant at the time. Six years ago, the available gluten-free (GF) foods were unpalatable and exorbitantly expensive. I was working full time and I hadn’t scheduled in the new food shopping, cooking, and baking from scratch. And who wants to learn that your 2 kids have a medical condition when you are pregnant with your third? This was an unwelcome surprise.

How does a doctor react to a new diagnosis involving her own child? For me, the hardest part was the chronicity. Kids are resilient, that is our mantra. Childhood illnesses and traumas are scary but usually transient. The celiac diagnosis was life-long, and therefore, life-altering. This meant strict compliance of a GF lifestyle in order to prevent a host of medical problems. It was a tough one to swallow. It was the end of spontaneity. Back to the diaper bag. Welcome to birthday party HELL.

The clinical part of me faded quickly. The celiac question had been asked and, unfortunately, answered. What remained was the familiar maternal challenge of keeping my children happy and healthy to the best of my abilities. It was parenting, and it just got a little tougher.

That darn 100th day of school!

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Who remembers the 100th day of school celebrations in your children’s kindergarten class? It is a day the students and teachers eagerly await as they count from the last days of summer to the middle of February. The day itself involves a party, counting various items, decorating hats and of course…food.

The children eagerly await this day. They count and remind both parents and their older siblings, who roll their eyes and recall the days when their homework was as easy as counting to 100.

Two weeks before the celebration (day 90) my 5 year old son brought home a paper with instructions. On Leo’s paper, fruit loops and macaroni were the items circled for me to bring to the classroom. Since my children have celiac disease and can only eat gluten-free food, I asked the teacher if I could substitute another cereal for everyone to enjoy. That would be fine, she said, as there were enough other people to bring in the Fruit Loops. My pantry is well-stocked with GF pasta so the macaroni was no problem. I went to three stores to find a yummy tasting GF cereal that he approved. Trix had already been used in another school project, Koala crisps were too small, and Chocolate Chex were nowhere to be found that week. We settled on Cocoa Pebbles (rather than Cocoa Puffs which contain gluten)  and brought them to school.

The 100th day party looked like it was a big success as we saw the children pouring into the schoolyard with their hats and stickers. Leo waited patiently for his older brothers to return from school to show them what he brought home. “Make sure you don’t open my bag until my brothers come home!”   After they arrived and we sat around the table, Leo proudly put on his hat, zipped open his Batman backpack and pulled out his Fruit Loop chain necklace.  Grinning from ear to ear, he placed it around his neck. I asked “Wow Leo, did you make that?” “Yes, and there are 100 pieces,” he replied as he started to lick one.  Softly I said “Well you know those have gluten and you really can’t eat them, honey.” And with that, in one motion he angrily yanked off the necklace, threw it on the ground and shouted “So then I made that for nothing?” and began to cry.

My son Leo is not exactly even-tempered. He often acts out when he doesn’t get his way, he is loud and out-spoken. But as I held him at that moment and watched the tears rolling down his cheeks while he took deep breaths, I noticed his voice was trembling. I don’t remember the last time I had seen him so SAD. “But what about the Cocoa Pebbles and the macaroni?” I foolishly asked. I felt desperate! Then my 9 year old son Ben chimed in “You see mommy??? That’s what it’s always like for us! We are always eating something different!”  It’s true, I had made sure that the kids always had an alternative snack for birthday and other school celebrations. But invariably there were issues. One time, a bag of Hershey kisses was kept in a cabinet and a mouse found them.   Occasionally the desserts or my homemade bread would get thrown out from the fridge or freezer in the faculty room. I guess I can understood how that could happen due to a shortage of space, but how do you explain that to the disappointed child?

These thoughts raced through my mind, recollections of my attempts throughout the years to create a world where my kids could enjoy treats along with everyone else. How many other mothers out there do this for their children? Thousands, I know, during this day and age. Food allergies and dietary restrictions are everywhere. Getting it right takes a lot of practice and patience.

Ben came over and whispered to me “Mommy, keep Leo away from the kitchen for now.”  I then looked across the room at the kitchen counter where my 11 year old son Sam had taken a small screwdriver and a box of gluten free Puffins cereal. Since two of my children are also diabetic, he was weighing them out on a scale in order to calculate the number of carbohydrates they contained.  Puffins are bloated squares made from rice flour and their shape and consistency make them big enough to poke a hole through with a screwdriver. He was determined to make his little brother a necklace for the 100th day of school.

So, I sat there holding Leo: his body defeated and collapsed in my arms, his tears soaking my shirt. And I watched what his big brothers were doing. I was speechless and so grateful for their caring and resourcefulness. Then Leo started wiggling in my lap and I knew that I needed to figure out a way to distract him in order to keep the necklace a surprise until it was completed.  These boys, I thought… I must be doing something right.