Five Years Better?

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Five years later.  My oldest son Sam was diagnosed with diabetes five years ago today.  I remember it vividly-that hazy, humid morning when Sam decided to impress his friends in the camp carpool by “playfully” checking his blood sugar in the car. The meter surprisingly read “400.” I kicked the four other boys from the car, and dealt with Sam’s condition as best I could: Phone calls to Adam and the endocrinologist, the trip down the Naomi Berrie Diabetes Center at Columbia.

Life, once again, interrupted by another medical diagnosis. Our family had just reached some degree of stability. Four year old Leo (who had been diabetic for almost three years) had a counselor to monitor his blood sugar at a day camp, Sam was returning to camp for the first day after a boating accident left him with 30 stitches above his eye. He was excited about his trip to the water park the following day.

We were about to put our house on the market- bigger home- one button push away that very morning. Contract with broker signed, photos taken, open house scheduled. Of course, health is paramount, this was canceled, indefinitely.

Five years older.No age is “good” to develop diabetes. The fluctuating blood sugars are not good for the human body. This we know.  When Leo was diagnosed with diabetes at 13 months, some people commented,  “Well, it’s better that he is young, he won’t know anything different” . Where did that leave Sam, a nine-year old already dealing with a diet restricted by celiac disease and multiple food allergies? He had already lived through almost three years of our meticulous carb-counting , blood testing and site-changing with his brother. He already hated diabetes.

Five years more exhausted. Diabetes is pervasive and all-encompassing. Other adjectives are relentless, unpredictable, inconvenient, and just plain hard. When it comes to multiple siblings in a family, one plus one is more than two. Although this shouldn’t happen, we sometimes forget who was bolused for breakfast, who checked most recently and was corrected, when was the last site change, etc…

I was already exhausted from the 24/7 care of a rambunctious little boy with brittle diabetes, and I could not imagine how I would manage two children. My energy was sapped, my mental faculties maximally challenged , my emotions drained. The well was dry. I dreaded the days and weeks ahead which I knew would involve:  more diligent monitoring, always anticipating, thinking like a pancreas. My friends and family, always supportive, offered encouragement “You can do it, you’ve already done it.”  “One foot in front of the other”. What else could they say?

But Still Standing…  Five years ago, there was no light at the end of the tunnel. But aging has its advantages. My children have become more independent and resourceful. Sam manages his own blood sugar and can change both his pump and monitor sites, except when he doesn’t.  Remember, he is a teenager. At sleepaway camp, he must do everything himself, while at home he prefers our assistance. Leo can both test himself and administer his own insulin. This is HUGE! At eight years old I can finally drop him off at play dates (although birthday parties are still tricky). It can be dangerous  because he now thinks he knows EVERYTHING. “Is there anything more I need to learn about my diabetes, Mom?”  He understands percentages and carb ratios more than most people understand multiplication, but too much insulin can cause scary low blood sugars, so he still needs adult supervision. The worry factor hasn’t changed. In fact perhaps it has increased, since they are beginning to make their own decisions.

As for me, aging stopped being fun a while ago, evident in my changing vision prescription, deepening crow’s feet and laugh lines, and more frequent trips to the hair salon. On the flip side, my children’s  growth has enabled me to go back to work, and spend more time with my husband and friends, as I begin to reclaim my life.

Five years later IS better, and diabetes research points to a more favorable future in next decade. In the meantime, I have three boys to get through adolescence. I brace myself for the odors, the mood swings, the heated arguments… But not before my power nap, followed by a large cup of coffee.  Definitely feeling five years older, but better as well.


Life’s Tough… get a helmet

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Several years ago, I bought this sign from a kitschy store in the small Pennsylvania town where my children attend sleepaway camp. It was half-way through my one week stint as a pediatrician, where I treat the injuries, illnesses, and psychosomatic pains of campers and staff. I laughed out loud when I read this sign, recognizing both the absurdity and appropriateness of the motto. As a general pediatrician for the past 17 years, I preach anticipatory guidance at most office visits.  As a mother, I do my very best to comply. Car seats, helmets, protection from sharp corners, outlets, and choking hazards.  A tragic case I saw in the ICU left me with a balloon phobia, so my children only had mylar balloons (no latex helium) until their fifth birthdays.

The sign rests in the most conspicuous part of my home, on my entry bureau as a daily reminder. What exactly does it mean? I both appreciate the sign and resent it. Chronic health conditions such as diabetes, the most difficult part of my children’s existence, could not have been prevented by a helmet, or full armor for that matter. Neither could they have been prevented by my meticulous pre-natal diet with food restrictions, followed by breast-feeding. A ski helmet did not protect my mother from a traumatic brain injury, which required surgery and prolonged rehabilitation. It clearly would not have helped Sam with his multiple injuries this past summer, for which he spent several weeks in a leg and arm cast. Most recently, a helmet did not protect little Leo from breaking his wrist while skiing last month.

Metaphorically, I love displaying the sign. The importance of developing a thick skin to deal with life’s challenges should not be lost on anyone, including myself. We prevent what we can, we hope for the best, we walk outside and face the many obstacles in our path. I have tried to teach my children that diabetes should not prevent them from doing or accomplishing anything. My 14 year old son just left for an eighth grade trip to Israel for two weeks. A year ago, even six months ago, we did not think this was possible. It was too complicated: diabetes, celiac disease, multiple food allergies, growth hormone deficiency and asthma. No helmet could protect from him the myriad complications which could occur from any of these while he was away.  Thanks to technology, we armed him with as many gadgets as possible: a continuous glucose monitor, an extra insulin pump, even a new incredible device called the Dexcom SHARE, which allows us to view his blood sugars  from our iPhone as he SLEEPS while he is half way around the world. Although it only works part of the time, it is an extra cushion to prevent the near disaster of what happened on his Washington DC trip in April (see: Not just a gadget).

More importantly, he is armed with the fortitude and problem-solving ability he has developed over the past few years. That’s his real helmet. Both he and we know that problems will arise. He is sharing this amazing experience in Israel among his closest friends, We hope he won’t let his frustration and discomfort (which we have read by text already) ruin his time. “It’s hard doing everything myself, being in charge of everything. I never get to relax.” This trip will empower him and help him realize he is able to accomplish all he sets out to do. That is what he and we want.

But dammit, he better tie his shoes on those long rugged hikes, and whenever necessary, he better wear an ACTUAL helmet…


Not Just a Gadget

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Last month the New York Times (NYT) published a controversial front page article describing  the exorbitant cost of care for Type 1 Diabetes. More specifically, it addressed the high price tag for technological  advances of glucose monitors and insulin pumps  Thousands of readers across the country were outraged and insulted, claiming that the article trivialized the development of these life-saving devices http://www.nytimes.com/2014/04/06/health/even-small-medical-advances-can-mean-big-jumps-in-bills.html. Since two of my three children are completely dependent on their meters and monitors, I was both shaken and surprised  when I read it.  I felt numb, then nauseous, and then grateful that I had a full Sunday of my sons’ activities to distract me.

Four days prior to this publication, one of these “gadgets” may have saved my son’s life while he was on a school trip to Washington D.C. It was Sam’s first time away from home other than sleepaway camp where , as camp doctor the first week each summer, I train the counselors to wake him during the night or the occasional a friend’s sleep-over, where I either call his phone or the parent wakes him to check. This school trip was a new experience.  Two weeks beforehand,  he started using the Dexcom CGM, a small device which continuously displays his blood sugar at any given moment . It is not perfect. It requires a separate needle and insertion site and calibration with the fingersticks several times a day, but it is very helpful in warning the direction of dangerous highs and lows.

The first day and night of his trip were non-eventful, and I barely heard from him. But the second night Sam called me at 2:30am to tell me that his CGM vibrated and woke him because he was running low, and he confirmed by fingerstick that his BG was 30. He took some emergency gel, went back to sleep , then woke up and called to tell me it came up to safe level of 150. I was 300 miles away,  and my heart nearly jumped out of my chest. I told him he did a great job, he did the right thing, and I would call him each hour. I called his actual room, because he no longer woke up to his cell phone. I called each hour, annoying the front desk clerk each time to transfer the call because Sam never answered on the first five rings. At one point she sighed “Mam, it’s 4:30 in the morning, I’ll transfer the call, but they are all sleeping.”  I called the school chaperone’s cell phone as well, just once that night, to make him aware of the situation. Sam was fine the rest of the night. And then, finally,  it was morning, breakfast time. Sam sounded tired, but ready for the return trip and stop-over in Philadelphia.

A BG (blood glucose) of 30 during sleep can be terrifying. While awake, a person with a BG of 30 may be ok, or may seize, or become unconscious.  If they are asleep, there is a chance they may never wake up. Hypoglycemic events are the most common cause of mortality in today’s  young Type 1 diabetic population.  It is the reason why parents wake their children during the night to check them. It is the reason why, when their child is out of their sight, the parent of a diabetic child may never truly relax. Sam had never been so low overnight. Why? Could it have been the travel, the sudden warm weather, different activity? We can’t know for sure.

As diligent as we are about managing diabetes, there is only so much we can do proactively. When emergencies happen, we need to be notified and react immediately. Sam’s CGM alerted him he was low, he somehow did exactly what he should have done, although I told him next time he needs to wake up one of his friends. He must know to make someone else aware of his situation. The whole experience shook me to my core. Most importantly, I was proud of him, and beyond grateful that he was ok.  And yet I couldn’t (and still can’t) ignore my fears of the future, future trips, weekends away, and even the not-so-distant reality of college.

The technology of diabetes care has advanced and enabled us to do more, and feel more secure than we have before. Reading the NYT article was an unwelcome splash of cold water in my face. Many people were angry. I was angry, but more surprised and concerned that people did not acknowledge the importance of these life-saving devices. Anger seemed like a waste of energy. The article mentioned that before the widespread availability of insulin in the 1920’s, Type 1 Diabetics would rarely survive more than a year. This harsh reality, combined with the development of the insulin pump and glucose sensors, makes me appreciate these advances even more. The JDRF voiced their outrage at the article, and started a hashtag movement #notjustagadget. The NYT did respond thereafter by publishing how the advances in diabetes care have dramatically reduced complications in developed countries, and how it remains a global epidemic. These articles seemed to validate the diabetes does warrant a large expenditure to prevent severe complications and death throughout the world.

As for the “gadgets” themselves, for me, the strongest emotion I recall in regard to their importance is how I felt while waiting for Sam to come off the bus. I waited patiently for him to collect his bags before enclosing him in the strongest hug I could manage.  I was grateful that we were giving his friend a ride so I could hear their laughter and eavesdrop on their comments, complaints, and recaps of the trip. It diluted the intensity of how I felt to have him home safely, gadgets and all.

 


March Madness

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In the winter of 2011, Leo was hospitalized for several days for a bout of gastroenteritis that further complicated his diabetes management.  While this hospital admission was not fun, at least there were no surprises   (i.e. no unexpected diagnoses). After his discharge, my husband Adam realized that he needed to start addressing his own health issues.  He had been blaming his stomach discomfort on his reflux but his symptoms were getting worse. While Leo and I were in the hospital, Adam developed left sided chest pain after shoveling our driveway. This was obviously worrisome and he FINALLY agreed to see his doctor.  Thankfully, his cardiac work-up was fine.  But his GI work-up revealed a clear-cut case of “cholecystitis” which means gallbladder disease/stones and inflammation. So we scheduled surgery ASAP. It was done laparoscopically (minimally invasive) and he recovered well.

Gallbladder disease is not uncommon for people in their 40’s, and patients usually recover well because the procedure is now done laparascopically. What I didn’t tell Adam is that when I was doing my third year clerkships in medical school, my first patient was a man with terrible complications from a laparascopic cholecystectomy.   I also recall that Andy Warhol died unexpectedly from a routine cholecystectomy at New York Hospital, on a floor right near the pediatric ward where I interned.  One of the problems with being a physician is that you can always think of a potential bad outcome. That is what we are trained to do!

I must admit that upon hearing Adam’s diagnosis, I was concerned for him but there was a little voice inside of me screaming “what about me?” I was so exhausted from the week in the hospital with Leo that I couldn’t imagine where I would get the strength to care for the whole family. Adam’s post-op recovery entailed 2 weeks of no driving and 6 weeks of not lifting anything heavier than 10 Lbs. So many people wanted to help, but it is hard to help out with what we do. All the carbohydrate counting, measuring, monitoring, cooking, pump site changes, growth hormone injections, etc…

A few days after Adam’s discharge we celebrated the festive holiday of Purim,  when the Jewish people commemorate  their cunning victory over an evil Persian leader from ancient times. I took my boys to our temple’s Purim Carnival, which is always loud, over stimulating and filled with food that my kids can’t and shouldn’t eat. It was challenging not to have Adam with me. Although it was fun to see our friends , I couldn’t wait to get home.  Monday, the following day, was a dismal mix of rain/snow/sleet. I was so tired that I forgot the kids were staying later at school for me to pick them up for Tae Kwon Do. I realized this when they weren’t home by 4:15 and drove to school to pick them up.  I was too exhausted to bring them to TKD, so I just brought them home. I remember driving and thinking   now it’s 5pm and I am so tired that I either need a nap or a large coffee. Leo and our dog Pepper were excited to see the boys and ran around the hall entrance excitedly. Within minutes of taking off my shoes, I heard a loud scream. There was Leo, holding his head, blood gushing everywhere. Other than where the walls meet, there are no sharp corners in my house. I have seen enough head injuries in my practice from fireplace mantles, tables and entertainment centers that all of the corners in my house are padded. Even our piano bench has a “diaper” on it.

Leo had collided with the wall corner, and he was standing on our carpet while his head continued to bleed. After bringing him to the bathroom to stop the bleeding with a pressure dressing and ice, we got ready to go to the ER and meet our friend the plastic surgeon (I now have his cell number). Leo is a resilient kid. He managed to eat some dinner while I got his test kit/food and his Nintendo DS ready. As Adam helped put on his shoes, Leo looked up at us and asked “How many days am I going to have to stay in the hospital this time?” God Bless my brave, funny, rambunctious boy….

It was a non-eventful trip to the ER. Irrigation to the wound site, 3 staples to the scalp, and we were quickly on our way home. With Leo’s friendly face, big cheeks and sense of humor, he is a magnet for good will and smiles wherever he goes. And he is so tolerant of any physical manipulation that people are always impressed with his stoicism.  Although the outside world doesn’t see his tantrums and devilish behavior at home, I’m sure it’s not hard to imagine.  But, as everyone knows, all of what happened on that particular Monday is regular kid’s stuff. It had nothing to do with diabetes or other chronic issues. The fallout is that I was even more drained that night. I went to sleep fantasizing about a time in my future when I wouldn’t be so important to so many people.

At school the following day, Leo was excited to “show and share” his wound and staples with his classmates. Later that night I brought his brothers to watch him in the nursery school Purim Play. Low and behold, our plastic surgeon sat in the row behind us, watching his 2 year old twins perform…


Gratitude: Top 10 List

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At the end of each calendar year, I do what most people do.  I take stock of life over the last twelve months and prepare to move forward into the new year. The fall of 2012 is forever scarred by the tragedy in Newtown and the disaster that Hurricane Sandy left in its wake. Of course, I am very saddened by this, and  I wish the families comfort and strength in the future.

Our family has been surprisingly … ok.  Upon hearing about how we fared in the storm, one friend remarked, “Wow, you sure threw everyone off this time.”  Most of my friends lost power for extended time periods and a few had property damage.  We felt grateful but awkward about our fortunate situation.  We had what I described as “power guilt.” For the first time in a while, we found ourselves in a position to help out the people who have given us so much. I discovered something else as well. Although I do believe in the oft repeated phrase “it is easier and more gratifying to give than to receive,” it can also be frustrating. Sure, we hosted meals, friends, electronic devices, showers, the occasional dog and hamster.  But I quickly learned that my grateful friends wanted what we couldn’t give them: the comforts of their own homes.

To our many friends who have been there for us in countless ways, I want to thank you. These are tangible ways they  have helped.

1) My high school friends: Upon hearing about  Leo’s diabetes diagnosis compounded by the celiac disease of the other boys, they generously contributed much needed gift cards to Whole Foods.

2) My friend researched and distributed GF recipes to people to prepare meals for us during the week that Leo was diagnosed with diabetes. She even requested the chefs include the carbohydrate counts with the food delivery!

3) The friends who drove to pick up our cars after we rode the ambulance to the tertiary care hospital from the after-hours clinic.

4) My friend who packed her three young kids in the car and drove to a GF bakery across the county to  drop off treats for Ben when he was in the hospital with swine flu.

5) My anesthesiologist friend who has supplied us with several years of tegaderm  tape. These  have made the kid’s  pump sites  last longer and reduced  my headaches from insurance companies.

6) Our friends who welcome the challenge of having us over with our three rambunctious boys and their crazy dietary restrictions.

7) My friend who ordered a Carvel cake with fudge in the center instead of crunchies for her son’s birthday so Sam could eat it.

8) My friend who always has a cabinet of GF treats for Sam for playdates .  One less worry for me.

9) Our friends who generously support us each year in JDRF Walk to Cure diabetes

10) The random calls, texts and emails just checking in…

This list has a few intentions. First, it is meant as a huge “Thank You” to our friends for all you have done, we will never forget it. We are blessed to have you in our lives. Second, for those of you in similar situations who just don’t know how to respond when people ask “how can I help?”, refer  them to this list. Deep in our hearts, we hope and pray for a cure for diabetes. In the meantime, there are many tangible and thoughtful ways that others can help you. Please accept their assistance. Giving is contagious, and one day you will have the opportunity to return the kindness.

Wishing everyone a wonderful year in 2013!


Diabetes Diagnosis: How did you know?

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Today is the 5 year anniversary of Leo’s diabetes diagnosis. Most parents of diabetics remember that date in their lives as prominently , but certainly not as celebratory, as their birthdays. Upon hearing that Leo was so young, I was always asked, “Diabetes at 13 months? How did you even know?”

The truth is that Leo’s diagnosis caught us completely off guard. Since he was in diapers and was a voracious eater/drinker since birth, the telltale signs of diabetes such as frequent urination and increased thirst were not clear. Furthermore, my family members and close friends were more concerned about my health at the time. Complications of the emergent c-section I had with Leo left me with a debilitating painful neuropathy. It has improved over the past 5 years, but at the time, I was not hopeful it would ever improve. After trying many therapies with many doctors, we decided that a surgery to resect the problematic nerve was the best option. This controversial surgery was only performed by a special neurosurgeon in Georgetown and we planned the surgery for September 2007.

Ultimately, I canceled the surgery because of other symptoms that cropped up, and this turned out to be a lucky stroke of fate. Three days after the scheduled surgery (when I would have been recovering in a hospital in Washington DC) 13 month old Leo ended up in the Pediatric ICU in Diabetic Ketoacidosis. His only symptom had been an awful diaper rash and some increased fatigue.

October 1, 2007 was a busy Monday in my pediatric office  When I came home the babysitter told me that he had white spots in his mouth and was crying a lot. When I arrived home I saw white spots were oral thrush,which is  uncommon at this age. This combined with the diaper rash made me ask myself: why he would have yeast overgrowth in 2 different parts of his body? It was something you would see in immunocompromised patients, and there was nothing wrong with his immune system. But could it be diabetes? Come to think of it, maybe he was going through more diapers than usual, but then again, I had never seen a child diagnosed so young.

Leo 1 week after diagnosis

With that question in mind, I brought to him to an after-hours pediatric emergency center instead of my own hospital because I knew how busy the ER would be. Perhaps I think I was in denial of the fact that Leo probably needed tertairy care. One of my former residents, Andre, was the attending physician that night. When they drew Leo’s blood without him even flinching, we knew that something was wrong. Andre showed me the lab slip without speaking (this was difficult for him as well) and his blood sugar was 880-that’s near coma level. I let out a slow “NOOHHHHHH“ wail. I was alone there with Leo. My husband Adam was at home with our other children on a conference call. He didn’t know why I was in such a rush to seek medical care that evening. Adam is not a physician, so when I called him he didn’t understand. “I know diabetes isn’t good-my Nana had it. But why are you freaking OUT?” Being a doctor, I knew our lives would never ever be the same again. From that moment on, Leo’s life would completely depend on insulin and strict management of his blood sugars and food intake. Every parent has hopes and dreams for a long, fulfilling life for their child. I knew that I needed to work as I hard as I could for as long as I could to ensure he could live without complications of this awful disease.

As the medical staff arranged for hospital transfer, I fielded phone calls from my mother as she was crossing the Tappan Zee Bridge to help us, concerned friends who were trying to help out in any way, and my work colleague Vicki who was taking call for our pediatric practice that night. We all shared degrees of shock, worry, and sadness.

After the calls, I took a deep breath and tried to sit calmly with Leo in the small, brightly-colored, child-friendly exam room and watched a silly show that was on TV. I looked down at him, his enormous eyes, dark hair and cherubic face. He was a baby, helpless and completely dependent on us. He was not able to understand the show we were watching, let alone how this diagnosis would affect his life. As I held him, my tears fell silently onto our already drenched clothing. In order to flush away the ketones in Leo’s body and correct his metabolic condition, he needed a lot of IV fluids. This was causing him to urinate so much he was constantly leaking through his diapers, no matter how often we tried to change them. Who would have thought to bring a change of clothes?

My sadness quickly changed to anxiety when I began to think of how I would manage this new life. I was stretched so thin already. In addition to our other young children, my work and my awful c-section pain were sucking the life out of me. I already felt like I was running on fumes. Now this? How? And then I started feeling frustration and anger as I frantically resumed my attempts to reach my sister Jodi. I am blessed with wonderful parents and two sisters. We have always been there for each other. Always. Jodi lived close by. But where was she now? And why on earth was she not answering her phone? Of course, after someone managed to reach her, she came to the hospital that very night with a huge hug and several changes of clothes for both Leo and myself.

Dr. Andre returned to our room and spoke with us for a little while. I don’t remember what he said, but I do remember his kind and patient tone. I was grateful that during our many ward rounds and clinic sessions, I had spent some time addressing the importance of empathy and effective communication with families, especially when relaying a difficult diagnosis. During times like this, it made a huge difference. Then he was called back to the phone to sign out details to the attending in the ICU. I stood close to the door in order to eavesdrop. I just couldn’t help myself. “13 month old male new-onset diabetic in DKA..” I retreated back into the room. It was surreal, this role reversal, this whole experience.

And that, five years ago, was how it all started.


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.


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.


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?


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.