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Sep 9 2012

A Survivor Story

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This post is dedicated to my husband Adam, who survived the attacks on 9/11 from his office on the 87th floor of 1 WTC. I encourage you to read his internationally acclaimed account of his escape and the many miracles which occurred that day to enable his survival.

How did this trauma affect our family? My oldest son was only 9 months old on that day, and so the births and very existence of my younger 2 sons are therefore also miracles. When you or your loved one stares death in the face, the aftershocks reverberate in your body forever. If you ask Adam, he was just as traumatized when we watched our middle son, Ben, decompensate in front of our eyes when he had the swine flu in 2009. The image of his 6 year old body thrashing on the hospital bed as he struggled to breathe like a fish out of water is seared into our memory as well.

We are survivors, we are grateful, and we never forget. Before we were the diabetic/celiac family, we were the 9/11 family in our neighborhood. But survival comes with a price. In addition to the aftershocks, there is survivor guilt (or in my case, vicarious survivor guilt.) Why was I so lucky that my husband survived and that my son still has his father, when so many others were lost? Why did Ben survive the swine flu, when the 6 year old boy in the neighboring town did not? He doesn’t have diabetes like his 2 brothers do, but who knows about the future?

The most important benefits of surviving a trauma are the intangible ones. Once you allow yourself to hit rock bottom, which is easier said than done, you can slowly begin to climb back up. After a certain amount of time and growth, you can begin to extract the goodness from every possible moment. It’s not that you don’t get impatient at long traffic lights or check-out lines, but you may snap out of it more quickly. A glimpse into mortality, if you allow it, can be a gift. It may profoundly influence how you experience life going forward.

Below is my husband’s email that he sent to a dozen friends and family on 9/12/01 before it went viral.

THE PRICE WE PAY:

My name is Adam Mayblum. I am alive today. I am committing this to “paper” so I never forget. SO WE NEVER FORGET. I am sure that this is one of thousands of stories that will emerge over the next several days and weeks.

I arrived as usual a little before 8am. My office was on the 87th floor of 1 World Trade Center, AKA: Tower 1, AKA: the North Tower. Most of my associates were in by 8:30m. We were standing around, joking around, eating breakfast, checking emails, and getting set for the day when the first plane hit just a few stories above us. I must stress that we did not know that it was a plane. The building lurched violently and shook as if it were an earthquake. People screamed. I watched out my window as the building seemed to move 10 to 20 feet in each direction. It rumbled and shook long enough for me to get my wits about myself and grab a co-worker and seek shelter under a doorway. Light fixtures and parts of the ceiling collapsed. The kitchen was destroyed. We were certain that it was a bomb. We looked out the windows. Reams of paper were flying everywhere, like a ticker tape parade. I looked down at the street. I could see people in Battery Park City looking up. Smoke started billowing in through the holes in the ceiling. I believe that there were 13 of us.

We did not panic. I can only assume that we thought that the worst was over. The building was standing and we were shaken but alive. We checked the halls. The smoke was thick and white and did not smell like I imagined smoke should smell. Not like your BBQ or your fireplace or even a bonfire. The phones were working. My wife had taken our 9 month old for his check up. I called my nanny at home and told her to page my wife, tell her that a bomb went off, I was ok, and on my way out. I grabbed my laptop. Took off my tee shirt and ripped it into 3 pieces. Soaked it in water. Gave 2 pieces to my friends. Tied my piece around my face to act as an air filter. And we all started moving to the staircase. One of my dearest friends said that he was staying until the police or firemen came to get him. In the halls there were tiny fires and sparks. The ceiling had collapsed in the men’s bathroom. It was gone along with anyone who may have been in there. We did not go in to look. We missed the staircase on the first run and had to double back. Once in the staircase we picked up fire extinguishers just incase. On the 85th floor a brave associate of mine and I headed back up to our office to drag out my partner who stayed behind. There was no air, just white smoke. We made the rounds through the office calling his name. No response. He must have succumbed to the smoke. We left defeated in our efforts and made our way back to the stairwell. We proceeded to the 78th floor where we had to change over to a different stairwell. 78 is the main junction to switch to the upper floors. I expected to see more people. There were some 50 to 60 more. Not enough. Wires and fires all over the place. Smoke too. A brave man was fighting a fire with the emergency hose. I stopped with to friends to make sure that everyone from our office was accounted for. We ushered them and confused people into the stairwell. In retrospect, I recall seeing Harry, my head trader, doing the same several yards behind me. I am only 35. I have known him for over 14 years. I headed into the stairwell with 2 friends.

We were moving down very orderly in Stair Case A. very slowly. No panic. At least not overt panic. My legs could not stop shaking. My heart was pounding. Some nervous jokes and laughter. I made a crack about ruining a brand new pair of Merrells. Even still, they were right, my feet felt great. We all laughed. We checked our cell phones. Surprisingly, there was a very good signal, but the Sprint network was jammed. I heard that the Blackberry 2 way email devices worked perfectly. On the phones, 1 out of 20 dial attempts got through. I knew I could not reach my wife so I called my parents. I told them what happened and that we were all okay and on the way down. Soon, my sister in law reached me. I told her we were fine and moving down. I believe that was about the 65th floor. We were bored and nervous. I called my friend Angel in San Francisco. I knew he would be watching. He was amazed I was on the phone. He told me to get out that there was another plane on its way. I did not know what he was talking about. By now the second plane had struck Tower 2. We were so deep into the middle of our building that we did not hear or feel anything. We had no idea what was really going on. We kept making way for wounded to go down ahead of us. Not many of them, just a few. No one seemed seriously wounded. Just some cuts and scrapes. Everyone cooperated. Everyone was a hero yesterday. No questions asked. I had co-workers in another office on the 77th floor. I tried dozens of times to get them on their cell phones or office lines. It was futile. Later I found that they were alive. One of the many miracles on a day of tragedy.

On the 53rd floor we came across a very heavyset man sitting on the stairs. I asked if he needed help or was he just resting. He needed help. I knew I would have trouble carrying him because I have a very bad back. But my friend and I offered anyway. We told him he could lean on us. He hesitated, I don’t know why. I said do you want to come or do you want us to send help for you. He chose for help. I told him he was on the 53rd floor in Stairwell A and that’s what I would tell the rescue workers. He said okay and we left.

On the 44th floor my phone rang again. It was my parents. They were hysterical. I said relax, I’m fine. My father said get out, there is third plane coming. I still did not understand. I was kind of angry. What did my parents think? Like I needed some other reason to get going? I couldn’t move the thousand people in front of me any faster. I know they love me, but no one inside understood what the situation really was. My parents did. Starting around this floor the firemen, policemen, WTC K-9 units without the dogs, anyone with a badge, started coming up as we were heading down. I stopped a lot of them and told them about the man on 53 and my friend on 87. I later felt terrible about this. They headed up to find those people and met death instead.

On the 33rd floor I spoke with a man who somehow new most of the details. He said 2 small planes hit the building. Now we all started talking about which terrorist group it was. Was it an internal organization or an external one? The overwhelming but uninformed opinion was Islamic Fanatics. Regardless, we now knew that it was not a bomb and there were potentially more planes coming. We understood.

On the 3r floor the lights went out and we heard & felt this rumbling coming towards us from above. I thought the staircase was collapsing upon itself. It was 10am now and that was Tower 2 collapsing next door. We did not know that. Someone had a flashlight. We passed it forward and left the stairwell and headed down a dark and cramped corridor to an exit. We could not see at all. I recommended that everyone place a hand on the shoulder of the person in front of them and call out if they hit an obstacle so others would know to avoid it. They did. It worked perfectly. We reached another stairwell and saw a female officer emerge soaking wet and covered in soot. She said we could not go that way it was blocked. Go up to 4 and use the other exit. Just as we started up she said it was ok to go down instead. There was water everywhere. I called out for hands on shoulders again and she said that was a great idea. She stayed behind instructing people to do that. I do not know what happened to her.

We emerged into an enormous room. It was light but filled with smoke. I commented to a friend that it must be under construction. Then we realized where we were. It was the second floor. The one that overlooks the lobby. We were ushered out into the courtyard, the one where the fountain used to be. My first thought was of a TV movie I saw once about nuclear winter and fallout. I could not understand where all of the debris came from. There was at least five inches of this gray pasty dusty drywall soot on the ground as well as a thickness of it in the air. Twisted steel and wires. I heard there were bodies and body parts as well, but I did not look. It was bad enough. We hid under the remaining overhangs and moved out to the street. We were told to keep walking towards Houston Street. The odd thing is that there were very few rescue workers around. Less than five. They all must have been trapped under the debris when Tower 2 fell. We did not know that and could not understand where all of that debris came from. It was just my friend Kern and I now. We were hugging but sad. We felt certain that most of our friends ahead of us died and we knew no one behind us.

We came upon a post office several blocks away. We stopped and looked up. Our building, exactly where our office is (was), was engulfed in flame and smoke. A postal worker said that Tower 2 had fallen down. I looked again and sure enough it was gone. My heart was racing. We kept trying to call our families. I could not get in touch with my wife. Finally I got through to my parents. Relived is not the word to explain their feelings. They got through to my wife, thank G-d and let her know I was alive. We sat down. A girl on a bike offered us some water. Just as she took the cap off her bottle we heard a rumble. We looked up and our building, Tower 1 collapsed. I did not note the time but I am told it was 10:30am. We had been out less than 15 minutes.

We were mourning our lost friends, particularly the one who stayed in the office as we were now sure that he had perished. We started walking towards Union Square. I was going to Beth Israel Medical Center to be looked at. We stopped to hear the President speaking on the radio. My phone rang. It was my wife. I think I fell to my knees crying. The she told me the most incredible thing. My partner who had stayed behind called her. He was alive and well. I guess we just lost him in the commotion. We started jumping and hugging and shouting. I told my wife that my brother had arranged for a hotel in midtown. He can be very resourceful in that way. I told her I would call her from there. My brother and I managed to get a gypsy cab to take us home to Westchester instead. I cried on my son and held my wife until I fell asleep.

As it turns out my partner, the one who I thought had stayed behind was behind us with Harry Ramos, our head trader. This is now second hand information. They came upon Victor, the heavyset man on the 53rd floor. They helped him. He could barely move. My partner bravely/stupidly tested the elevator on the 52nd floor. He rode it down to the sky lobby on 44. The doors opened, it was fine. He rode it back up and got Harry and Victor. I don’t yet know if anyone else joined them. Once on 44 they made their way back into the stairwell. Someplace around the 39th to 36th floors they felt the same rumble I felt on the 3rd floor. It was 10am and Tower 2 was coming down. They had about 30 minutes to get out. Victor said he could no longer move. They offered to have him lead on them. He said he couldn’t do it. My partner hollered at him to sit on his butt and schooch down the steps. He said he was not capable of doing it. Harry told my partner to go ahead of them. Harry had once had a heart attack and was worried about this mans heart. It was his nature to be this way. He was/is one of the kindest people I know. He would not leave a man behind. My partner went ahead and made it out. He said he was out maybe 10 minutes before the building came down. This means that Harry had maybe 25 minutes to move Victor 36 floors.
I guess they moved 1 floor every 1.5 minutes. Just a guess. This means Harry wad around the 20th floor when the building collapsed. As of now 12 of 13 people are accounted for. As of 6pm yesterday his wife had not heard from him. I fear that Harry is lost. However, a short while ago I heard that he may be alive. Apparently there is a web site with survivor names on it and his name appears there. Unfortunately, Ramos is not an uncommon name in New York. Pray for him and all those like him.

With regards to the firemen heading upstairs, I realize that they were going up anyway. But, it hurts to know that I may have made them move quicker to find my friend. Rationally, I know this is not true and that I am not the responsible one. The responsible ones are in hiding somewhere on this planet and damn them for making me feel like this. But they should know that they failed in terrorizing us. We were calm. Those men and women that went up were heroes in the face of it all. They must have known what was going on and they did their jobs. Ordinary people were heroes too. Today the images that people around the world equate with power and democracy are gone but “America” is not an image it is a concept. That concept is only strengthened by our pulling together as a team. If you want to kill us, leave us alone because we will do it by ourselves. If you want to make us stronger, attack and we unite. This is the ultimate failure of terrorism against The United States and the ultimate price we pay to be free, to decide where we want to work, what we want to eat, and when & where we want to go on vacation. The very moment the first plane was hijacked, democracy won.

Aug 10 2012

Thank you, Wrightsville Beach

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We just pulled out of our rental in Wrightsville Beach and are driving back to NY. I signed the guest book and thanked the condo owner for the best vacation we’ve had in so many years.
Wrightsville (named after the famous brothers who were “First in Flight”) is a small island off of Wilmington, NC. Each year my husband’s extended family gathers here for a week in early August. While Adam’s immediate ancestors emigrated to NY from Eastern Europe, many of them somehow ended up in the Southeastern US. Some of the family descendants have since spread out to different regions, but they have been coming back to Wrightsville for the past 60 summers.

I just love it here. The ocean is undoubtedly the most enjoyable, swimmable water anywhere. Perfectly smooth sand, little to no ocean debris, perfect water temperature and great waves that allow for amazing body surfing. Cape Cod, Hamptons, and Boca can wait. When it comes to a great beach day, Wrightsville is my dirty little beach secret.

Vacations like these, with the serenity of the ocean and the laid-back atmosphere, provide opportunity for reflection and nostalgia. I was pregnant with my oldest son Sam during my first visit. Because we were less encumbered and more adventurous then, we first flew to Norfolk and travelled through the Outer Banks before continuing on to Wrightsville. We have returned 7 times since then and our own family has grown to include our 3 boys. Adam and I reminisce about when the boys were younger and our days were far from relaxing.…Remember when you were so upset that the boys hated the beach because of the sand? Diaper bags, sippy cups, prickly heat and wrestling over sunscreen application? When Leo ran into the ocean with his insulin pump on? When the fire alarm in the hotel went off, causing Ben to cry for hours?

One of the best things about Wrightsville is being with all the different generations. There is always a reason to celebrate: bridal shower, new baby, engagement, birthday parties. We always celebrate the matriarch Aunt Elaine’s birthday (she just turned 87), and we also celebrate Leo’s birthday. Since there are many offshoots of the family, there are many informal gatherings, brunch, BBQ, pizza party. This year Uncle Tommy brought in a DJ from Charlotte, NC for the ice cream party . It’s not easy to satisfy musical tastes spanning 8 decades, but he got a lot of people dancing that night.

I also love hearing what the younger cousins are up to. Over the past decade, I have seen the high school partiers advance to hard-working jobs, teaching positions, medical school and doctoral programs. Some are still finding their way. Throughout the year, we all look forward to the week . We share our trials and triumphs and we don’t need to feel bad if we haven’t been in touch over the past year. It’s always, “see you at beach.”

I feel happier and more relaxed than I have in many years. Unfortunately, Adam and I think of our lives as BD and AD, before diabetes and after diabetes. This year marks our 5th summer with diabetes. It’s not that we can’t enjoy ourselves at all, it’s just a different reality. We do our best with monitoring blood sugars, weighing foods to give appropriate insulin, and dealing with food restrictions. Since we are away from our regular routines and enjoying extra festivities, we know we may also be up all night correcting wide blood sugar swings.

Somehow this year feels different, it feels better. It is still complicated and frustrating, but nothing unexpected. Every day remains challenging, but I think, just maybe, that I have finally accepted the diabetes. I was upset when Adam told me last year, “You have not yet come to terms with the kids having diabetes, you are still so angry.” Perhaps he was right?
My job is to manage my kids’ diabetes, restrictive diets, foster emotional growth, and provide them with every possible opportunity to experience life safely. A week like this one reassures me that we’re all doing well.

As Adam drives us home, I close my eyes and try to burn the recent images into my brain…the boys playing ball on the beach with their cousins, Marco Polo in the pool, tubing from Tommy’s boat, and dancing on Aunt Elaine’s driveway. I tell Adam “I am so happy. Please remind me of this moment during the low points we always hit during the year.”

What is it about Wrightsville? A dose of blissful summer heaven, the vast ocean showing us a world larger than our own, the stormy weather blowing over so we can enjoy the remainder of our afternoon. During my last view from the terrace this morning I enjoyed watching and listening to the waves repeatedly lap the shoreline. I wondered what was in store for us during the coming year, grateful that we can return here again. Then the sounds of my kids fighting brought me back inside. It was time to load the car before we gassed up and grabbed coffee for the road.

Thank you Wrightsville, and thank you readers. This blog is about the realities of our everyday lives: the good and the bad. How great it feels to focus on the good.

Jul 17 2012

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?

Jun 25 2012

Top 6 supportive things to hear when….

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Back by popular demand, I received such good feedback from my last “Top 6 List” that I am following it up with another. I thought it would be nice to share some of my favorite supportive comments which have helped me in several situations where I shared medical news about my children.  It is amazing how poignant a few well spoken words can be.

6.    I’m sorry

Brief but sincere and sufficient

5.    I’m sorry you/your family is going through all this

Same idea, well received

4.    That sucks

Call it like it is

3.    What kind of B—– were you in your former life that you deserve all of this?   

Wow, how was that helpful?  It made me laugh and it validated that sick feeling I had for a long time. Why was this happening to my kids? Why them? As their primary caregiver, why me? These rhetorical questions are impossible to answer, but it is comforting to hear someone else ask them.

2.    OMG-what reaction do you want right now? Do you want funny? Dramatic? What will make you feel better?    This comment referred to when my husband found out he needed to have emergent gallbladder surgery the week after one of my son’s hospitalizations. In all fairness, sometimes we are so overwhelmed we don’t even know what would be helpful. In that case, perhaps it is best to be safe with #6 or #5

 1.     I wish for you the strength …that I know you have… to get through this.

This made such a great impact on me that I can recall exactly what road I was driving on when I listened to this voicemail for the first time.  I was returning home for a respite from the ICU after my 13 month old son Leo was diagnosed with diabetes. Since that time, it has been branded into my memory and serves me well whenever the need arises.

So, what do you say to a person after hearing their bad news? The way I look at it, you can’t go wrong with acknowledgment and validation. Realistic encouragement helps, as well as the offer of concrete advice. For example, it may be helpful to provide the contact information of a great specialist or a family who has been in similar circumstances. Humor can do wonders, but you need to know your audience. In the end, it’s about sincerity and attention. In our fast-paced, multi-tasking, digital world, a simple and genuine remark with eye contact may go a long way.

Thank goodness for all of the friends and family surrounding me who seem to understand this.

May 21 2012

Top 6 Most Unhelpful Things to Hear After…

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I recently stumbled upon this list I wrote 6 years ago:

The top 6 most unhelpful things to hear after your child is diagnosed with celiac disease.

Wow, was I angry! I did not record the exact date on which I wrote this list, but I know it was around 3am and within weeks of my sons’ diagnoses of celiac disease (3 and 5 years old at the time).

We’ve all been there. It’s the middle of the night, and we lie in bed stewing about our current crisis. There are no distractions. We are free to analyze the painful remarks and fantasize about the missed opportunities for great comebacks.  I myself was angry, worried, frustrated, and pregnant.

6.  Well, it’s really just a diet.         Just a diet?  It is a life-long food restriction with potential medical consequences.  

5.  It’s  good that you’re also kosher so you already know about food restrictions.        Huh?

4.  It could be worse.      Ok, I am a pediatrician. I have treated children with devastating disease and traumatic injuries. Do they think I don’t know it could be worse?

3.  It’s  good that at least they both have it.       Really? How is that good?  Maybe  it’s easier to get dinner on the table, but what’s good about having 2 kids with a chronic health condition?

2.  Wow, that’s so interesting!         Remarks from a colleague. Interesting?? It sucks.

1.  Well maybe this will make you more empathetic as a pediatrician.     What?!! I don’t claim to be perfect, but I know that as far as empathy goes, I rank pretty high.  And besides, we’re talking about my own children. How does this help them? If I were an oncologist, would it be easier if my child was diagnosed with cancer?

Over the past 6 years the medical issues of my family have increased in both numbers and acuity.  I have learned to accept these awkward remarks with grace. I believe that people want to say something, anything, that can ease a painful situation. So, I have learned to look upon comments like this as unhelpful rather than stupid or demeaning. Depending on the setting and my mood, I usually take a deep breath and nod or smile faintly. But I’m glad I found this list that I wrote years ago. Looking back, I see that these were well-intentioned comments made by people who wanted to make me feel better, regardless of how strange or irrelevant they sounded at the time. I am so very grateful to have these people in my life (well, most of them anyhow 🙂 ), and I get what they were trying to do.

With the exception of #1, the empathy comment, that is. Clearly that one touched a nerve…

May 8 2012

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.

Apr 22 2012

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.

Apr 11 2012

Just for an hour…

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In Boca Raton, where Palmetto Park Drive meets the ocean, there is a small town beach called South Beach Pavilion. There is a circular parking lot with muni meters so you can stay for only one hour. Although this may seem too short for many people, it works well for us. Only 30 steps from the beach, time is limited so there’s no need to worry about food. We check the kids’ blood sugars, disconnect their insulin pumps and put them in the cooler, and we bring the towels and sand toys down to the water.

It is convenient. But I like South Beach Pavilion for a different reason.

Just for an hour my sons can run into the water freely without caring about their insulin pumps.

Just for an hour they can play in the sand without worrying about damaging these $5000 pieces of equipment which are their life support.

Just for an hour they can play without watching everyone gather for picnics with tons of food.

Just for an hour Sam can go over to a group of older boys and play beach soccer without having them look at him strangely and ask him why he wears a fanny pack containing his pump.

Just for an hour my children can build castles, play volleyball, splash around with other kids and not have to think about their diabetes.

And just for an hour my husband and I can relax, listen to the kids squeal as they jump into the cold ocean water, chase seagulls, and pick up shells

 

Just for an hour we can sit quietly, watching this ocean scene, care- free, phone-free for this hour. No need to explain to anyone that in this time-limited perfect setting, we have absolutely no doubt in our minds that we are by far the HAPPIEST people on the beach.