Work is Good

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I just completed my first month of work at Pediatric Associates of Southern Westchester and… work is good!

What surprised me was how quickly I started to enjoy working. I was fully aware of some of challenges: the paperless, computerized system (new to me), navigating a busy new office with different protocols and personalities, and brushing up on new vaccine schedules and antibiotic dosing. The biggest challenge is mental expenditure. After all, work is work! Everyone knows that work requires not only a commitment of time, but a commitment of mental energy and emotion. Given the breadth of my own family’s medical needs, it had been a long time before I could even think about adding work to my plate.

So, how does it feel to be back taking care of other children, other families? I love it. I remember how much I truly love working with children!  It feels great to answer questions and to put my education to the use for which it was intended.  Over the past five years questions ranged from, “Mom, where are my socks? … how many carbs and are you SURE its gluten-free…?to … should we start the steroids for his asthma, or will it make his blood sugars too high?”   My pediatric expertise helped a little, mostly when the diabetes was complicated by other medical issues. Diagnosing and treating patients who have issues beyond the scope of my children’s issues is, for lack of a better term, refreshing. I am helping them, even as I walk them out of the exam room.   I do not need to take their medical problems home with me. Being one step removed from the medical issues of my patients is an important distinction from the past several years at home with my family.

How is my own family doing? So far, they have been good. The school nurses call or text about Leo’s blood sugars, and my patients don’t seem to mind the very brief interruption. The days are busy, sometimes head-spinning and often no bathroom breaks for several hours. I completely lose track of time. I am happy my own children have the structure of school to check and report blood sugars. The unstructured time will be more difficult, I am sure.

And the juggling act of every working mother?  Shopping at four different stores to accommodate the dietary restrictions is challenging, and making the kids their favorite foods “re-heated, not fresh” isn’t perfect. Leo asks me daily about my work schedule (which is about 23 hours/week) and Ben sometimes waits for me to come home to start studying.  It is very heart-warming to hear the pitter-patter of feet and feel the warm hugs when I walk in the door. Those moments might be one of the best parts of going back to work.  Then, of course,  I start hearing … I’m hungry …What can I eat?  Part of me wants to run back to my car. But, that too, is a “joy” of motherhood…

 


MDMommy Goes to Washington

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I just returned from a few exciting days at a JDRF conference in Washington DC, where we advocated for our Congressman to continue to support diabetes research. You may ask how did this happen, given that you know I haven’t left my children for more than a 24 hour period since they developed type 1 diabetes (T1D)? Up until now, my involvement in JDRF has been both community outreach  and fundraising . A few weeks ago ,Michael, the Government Relations rep from our chapter notified us that he would be unable to attend this annual meeting and asked if anyone would go in his place. With the sequester and sensitive economic climate, it was important that we were represented.  Why not? A few days away with like-minded people advocating for a cause so close to my heart? Sure. As far as speaking to members of Congress, I looked forward to the opportunity. My father is an elected official; he has been a judge for over forty years. I have been speaking with politicians and strangers my entire life. Most importantly, the kids were finally stable enough for me to consider the trip. I started planning as soon as I cleared it with my husband Adam. I would be away for about 3 days.

The experience was…powerful. About 200 attendees from all over the country to represent people with T1D. The days and evenings leading up to our Capitol Hill meetings were packed with sessions and workshops.  One session gave everyone the opportunity to stand up and briefly introduce themselves and their connection to diabetes. We were not all parents of diabetics. Many people had diabetes themselves or were there for their affected spouses, siblings, grandchildren, cousins, nieces, nephews or friends. Unfortunately, many fit into more than just one of these categories. I was both moved and saddened by this. It was inspiring to feel the energy and commitment of this diverse group, but many stories demonstrated the tremendous impact of diabetes on the entire family. Not only is T1D a complicated disease, but it carries a strong genetic risk for future generations. There is strength in numbers, however, and we felt solidarity as a group in DC.  As a woman from Iowa said “the synergy in this room is palpable.”

The general tone of the conference was one I would call “optimistic realism.” We learned more about research developments like the artificial pancreas project as well as a new “smart” insulin and different ways to reboot the immune system so it won’t attack the insulin-producing cells. Most of us had heard about this research before, but was good to hear the progress.  I met some amazing people and heard firsthand some very interesting things: One woman was expecting to get a diabetic alert dog and other people were using new monitoring technology that I’ve been considering for my own children. A female attorney showed me the ankle holster where she holds her pump (what a great idea!). During the catered buffets and open bar receptions, we were able to relax, network and share some of our zany diabetes stories (see my favorites in a previous post  http://mdmommy.com/?m=201210).

It was great not to be “first call” for all the monitoring and planning at home, although my phone allowed me to be a close second. “Do I believe the packaging on the bag of GF bagels? 50g each? And Sam has running low in the 40’s tonight, I’m a little nervous about him going to sleep.”  A few of us got calls from our spouses during Sunday dinner asking what to pack for lunches and what they should tell the school nurse. We were in good company. We were keenly aware of the pervasiveness of diabetes and how it seeps into every aspect of our lives. But I felt that we had all been processing this for a while, and so we took comfort in knowing that the treatment of diabetes will only continue to get better and easier, until we have a cure. “Less Until None” was the motto used during the conference.

My favorite quote of the weekend was during the presentation of a remarkable woman, Suzy Watkins, who had used the artificial pancreas as part of a recent study. Recognizing the amount of thought  and decision making a type 1 diabetic makes on a daily basis, she asked “What will we do with the collective brain capacity of diabetics once a cure is found?” she asked. “We’ll find a cure for cancer or …(another disease)..”  It was a privilege for me to be among a group of such bright, thoughtful and dynamic people.

As far as the meetings on the Hill, they went well and we were appropriately exhausted at the end of the day. My only complaint about the weekend … I was really hoping for cherry blossoms since it was March in DC rather than the rain/snow/sleet we had. Oh well, there’s always next year. I’ll  have to come up with another excuse to take Michael’s place and have Adam watch the kids. Hmmm.


Mom’s Report Card: The A1C

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Tomorrow is our quarterly visit to the pediatric endocrinologist where we speak to the doctor after the kids are weighed, measured and we test their blood’s HbAlc level. The hemoglobin A1c measures blood sugar control over the previous 3 months. When blood sugar is high it sticks to the red blood cells.  The  most simple way to describe it is that the amount of “stickiness” or “glycosylation” can be tested every 3 months, the average lifetime of a red blood cell.

A normal A1c value is under 6. For children, endocrinologists say anything below 8.2 is fine in order to prevent complications from high BG’s. Doctors find the A1c’s somewhat useful, especially with teens who may be less compliant with monitoring themselves. But there are dangers in trying to attain perfect A1c’s as well.  Too many low BG’s aren’t good because they bring a higher risk for seizures, loss of consciousness, or worse…

In this day and age, advanced technology allows for easier testing and the ability to give insulin through a pump instead of injections. Leo’s  glucometer  may be used as a remote to tell the pump how much insulin to give him while he runs around the room (as long as he doesn’t run OUT of the room)!  What can be easier than that? In the past, people had to boil syringes and often went several weeks or months to check a BG. Before insulin was discovered in 1921, Type 1 diabetes was a death sentence. These patients usually survived up to one year after they were diagnosed. I still shudder at the thought of this, and always will.

Of course we are grateful or these miraculous advances, but they come with a price. As parents we do anything and everything for the health and well-being of our kids. This is seen in every aspect of life, certainly not just diabetes. The ability to micromanage blood sugars by testing 15 times a day and constantly tweaking insulin regimens can make anyone CRAZY.  Parents quickly learn what I and many other doctors never knew until I was in it myself: diabetes is like a living, dynamic entity. By this, I mean that no matter how closely we count carbohydrates and adjust insulin amounts, we often can’t get it right. As I have mentioned several times, there are just too many other factors. But that doesn’t stop us from trying even harder! We feel that we have more control and will do whatever it takes. Part of it is parental guilt, I’m sure. They are our children, and nothing is more important than their health. We become stressed, frustrated, and exhausted.

Early on after my kids were diagnosed, my friends saw the hypervigilance that diabetes required and asked me “what did people do before this technology?” My brief reply was “they may have had more complications.”  The detailed list of complications, however, was imprinted on my brain since medical school and it ended with the worst one: shortened lifespan.

At a recent meet-up for parents of diabetics, one mother spoke about her 22 year old son who is a bright, successful, athletic college graduate diagnosed with Type 1 diabetes at age 3. Her son is doing well now, as do many Type 1 diabetics.  She said, “I actually think it’s so much harder for all of you now since you have these tools, you have so much angst that comes with the perception of having more control.” In a way, we were all relieved to hear her acknowledge this.  Although we appreciate the technology, we feel helpless when the erratic blood sugar swings occur despite our best efforts.

As concerned parents, what are we to do? The best advice I have heard is the following : Living with diabetes is a marathon, not a sprint. I try to remember this.  If it was something that affected our own health, maybe we could let up for a while and take a short break from it. Because it’s our children, we continue to monitor at the intense pace that technology allows. While they are young, we can still help our children manage their diabetes and teach them how to be independent and responsible.  We learn that it is a marathon, and there are bad weeks and bad months. At 6 years old, Leo’s diabetes management is much easier than it was over the past 5 years, while Sam is entering adolescence and his management is becoming more difficult. I can only hope that I have succeeded helping him learn how to care for himself. After all, this is what they will need to do after they leave our homes for college and beyond.  Then we can stand by the sidelines and cheer them on as they continue to run the marathon.

I wonder what their A1c’s will be tomorrow…


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!


That Crazy Dog…and other funny sound bites from Diabetes

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That Crazy Dog…

Two weeks after Leo’s diabetes diagnosis, we attended the annual  Celiac  Awareness Walk . I didn’t really want to go. But, I knew my older two kids would love to run through the gluten-free vendor fair and stuff their faces with the delicious food samples. Sort of like squirrels hoarding nuts for the winter. It was a highlight of their year, and it was irreplaceable.

So we dragged our tired bodies, Leo in the stroller, packed the test kit, insulin injections, etc. Shortly after we arrived, he became super cranky and his blood sugar was over 400! We gave him insulin and water and waited for the numbers to come down to a safer level, which takes over an hour. I took him outside because he was crying inconsolably and there wasn’t anything inside for him to eat. In fact, it was painful  just to watch everyone eat all the high carbohydrate food.  I stayed outside and tried my best to distract him. I also needed a distraction. It happened to be Ben’s 5th birthday, and here I was at a Ceilac walk (another reminder of this difficult lifelong food restriction) with my screaming, newly diagnosed diabetic baby.

When his blood sugar came down to 300 (still high, but not as dangerous), I pulled out a low carb yogurt from my bag and started to feed him. Out of nowhere, a friendly-looking dog came running up to the stroller, knocked the yogurt out of our hands and started eating it. The couple who owned the dog  felt horrible! They apologized profusely and started to offer food, none of which he could eat. They were so excited when they found raisins- a healthy food! Surely your son could eat these raisins. No way! I wanted to cry, raisins are way too high in carbs! I wish he would have been happy with string cheese, peanut butter, but no, not him, not a chance.

The rest of my family saw this episode from a distance, thankfully, and thought it was hysterical.  Adam wished he had recorded it! We hightailed it to the car and went straight home. I don’t remember the rest of the day but I was glad to hear Adam retell it, because I definitely needed a laugh!

I’m  hungry, but…

Leo figured out by age 2 that we preferred him to eat healthy snacks rather than anything else. If his blood sugar was high and I went to the fridge to get carb-free cheese or turkey, he would sob and yell “I’m  hungry, but not for fridge food, I’m hungry for cabinet food!”  No healthy food for him, he wanted the good stuff, the carb-laden stuff, and he knew where to find it!

The hidden joy of being low…

When Sam was diagnosed with diabetes he already knew the drill from his brother’s experience. So if he was low, we would offer a nutritious apple to help bring his bg back up. He would protest that he only wanted otherwise forbidden sweets to bring him up. “I’m not wasting a low! Grapes and apples aren’t candy. Where are the glucose tabs or sweet tarts?”

Hansel and Gretel

I’m sorry, they’re EVERYWHERE. The small test trips which only need a tiny drop of blood to test sugar levels somehow make it in to the proper receptacle only 60% of the time. It’s tough, they are kids, they test themselves up to 15 times a day. They (and we, I confess) mean to throw them out but somehow those darn strips somehow fall out of the bag. It leaves a trail of our travels like Hansel and Gretel.

My sister Jodi chides me all the time “We always know when you’ve been here, we saw your evidence by the pool yesterday  and on the way to the baseball field last week.” Because she’s my sister, and closer to me than almost anyone else on the planet (and post-dates expectant with her 4th  child, I might add) she can give me hard time. But I do apologize about the trail of strips.

Black market

 I attended a wedding of a college friend two years ago, before Leo started school and before Sam was diagnosed. I met an old friend there who mentioned that he had become an assistant principal of a charter School in Manhattan. Of course I asked him if there were any diabetic children in his school and how they were managing their diabetes. A sly smile came across his face as he explained “Oh, we have a kindergartener with diabetes who seems to be managing just fine. But he recently got in trouble for running a Black Market on the playground. He was actually selling his glucose tabs! When we asked him why he was doing it, he replied shamelessly…they taste good, and people want them.”

Okay, maybe these don’t produce the ha-ha belly laughs that send you rolling on the floor. But they add a needed dimension to our lives, making the best of our daily stresses. I suppose I have to thank my mom who encouraged me to go  that Celiac Walk 5 years ago. “This is your life now. If it would be good for your family to learn things, try things, then maybe you should just go.”  Really, I wanted to hibernate in my room until the next blood sugar check. But then …we wouldn’t have had that great  “ The Dog Ate My Yogurt” story…


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?