The Disney Dilemma

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We all have moments when we are faced with the trade-off of good parenting versus family convenience. I was recently reminded of this when a colleague of mine was dreading her upcoming family trip to Disneyworld. Despite her detailed plans for the most useful Fast-Pass packages and the closest Disney Property lodging, she knew it would not be easy for her husband and her 2 young, rambunctious sons. She told me about her scheme to increase her child’s ADHD medication and pack many bribery snacks  in order to avoid major melt-downs while waiting for the rides.P1030692

Now, I know I am not alone in saying that Disney can sometimes be less than magical, and more of a necessary evil.

This brought me back to our recent trip to Disney, when my parents took my sisters’ and our families to Orlando for their 50th Anniversary two years ago. It was a wonderful trip, but as always, food presented a big challenge for us.  It was even harder this time because it was during Passover. We packed plenty of gluten-free food, and tried our best to keep kosher for the 8-day holiday.

My sister Jodi and I knew that we couldn’t coordinate the entire day together in the Magic Kingdom, due to different ages of the 7 kids. But we planned to finish the day at ROLLING THUNDER, their favorite ride. We managed to meet up a bit later than planned because my 10 year old nephew went “missing“ for a terrifying 28  minutes after going to the bathroom in Adventureland.  As we preparing for 6 of to go on the ride, a furious argument erupted between Leo and Ben, my two younger children. I don’t remember what caused the argument: we were all hot and exhausted. P1030711It may have had something to do with an ice-pop, but I could be mistaken, I am sure Leo’s blood sugar was high, since we had been detaching his insulin pump for the wet rides, and he was irritable.   I just remember it was loud, embarrassing, and physical.  I said  “That’s it-you are NOT coming on this ride with us” He was fuming when I left him with my sister and baby niece.

We had planned to use our Diabetes Passes, which at that time worked like a fast pass that allowed one diabetic person to bring two other passengers with them. While this may seem unfair to others with chronic conditions who don’t get special treatment, our family viewed it as one of the only perks of having this disease. So we went to our line, showed photo passes, at which point the attendants asked where Leo was. Clearly, we couldn’t use the Diabetes pass without him, and Sam’s pass wasn’t enough to get all the cousins on the ride. OOPS. I sheepishly mumbled “Uhh. He’s over there….bad behavior” The attendants glanced at each other and said “We heard. Well, he needs to ride if you want to use the pass.”  Adam and I looked at each other, knowing what was at stake. This was the fun roller coaster finale, and we didn’t want to ruin it for everyone. In a moment of weakness,  we told Leo to join us. So much for setting limits and teachable moments…

Disneyworld is magical, fun, and friendly. It can also be frustrating and anxiety –producing. My best advice to my colleague: Have as much fun as possible, expect many stressful situations, and remember that even the worst moments, in time, will be funny as well.

I’ll let you know how that worked out for her…

MDMommy Goes to Reunion

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A few weeks ago, I went to my 25th college reunion. It was a hectic time of year, and there were so many reasons not to go: playoff/championship games for my sons, graduation prep, camp packing, and I was missing the Bat Mitzvah of the daughter of my dear college friend. But I had been looking forward to it for years, and I did not want to miss it. After a busy Friday morning at work, I drove to my friend’s house in Croton.  Prepared for the fickle weather in Ithaca, we both laughed at the huge quantity of clothing we brought for two days, and we were on our way.

The ride up was beautiful, and it gave me a dose of what I had been pining for: rolling green hills, endless blue sky, and long stretches with no buildings in sight. My heart skipped a beat as we drove towards downtown, passing the familiar street signs of our off-campus apartments.  It was a mixture of excitement, apprehension and curiosity about whom I would see, how I would feel when I saw them and vice-versa.

We had a great time. It was fun to see the people we both expected and did not expect to see, roam through Cornell’s gorgeous campus, buy clothes from the store to bring home for our kids, and eat, drink and laugh at our favorite places in Collegetown. Many of the alumni from our year did not bring family like they had done in the past, which allowed us to be more flexible and spontaneous.

For me, the most surprising part was the content of many conversations we had. I did not feel myself compelled to speak much about my family beyond a brief description, or even to show photos from my phone. I hadn’t seen many of these people in 25 years. Our conversations were often brief, because someone else would pop in from the side and we would start up another topic. During the past 25 years, we all had experienced successes and failures, we all faced challenges. Some of had spouses and children, but not everyone, and I did not want to probe. My readers know that I am 150% invested in my family, particularly the high-maintenance medical care of my children.   It was refreshing, for the first time in what seemed like forever, to answer questions about me. “Did you end up becoming a doctor? Where do you live now? How are your sisters? Remember that time when…”  It was me before MD, me before marriage, me before mommy, and notably, me before my childrens’ diabetes and other health issues. It was profoundly liberating.

This brief detachment from diabetes was therapeutic and unfamiliar. While our parents had watched our children for a weekend or two in order for my husband Adam and I to get away, we were constantly interrupted by the multiple phone calls about blood sugars and insulin dosing. The planning alone for these excursions was exhausting, and often created more stress. Leaving the children in Adam’s capable hands for 48 hours gave me the freedom I needed.

The MDmommy part of me has always known the importance of “Me” time, and I advise new mothers to leave their babies with a capable caregiver for brief periods when they can, to regain a sense of self. Diabetes is so tricky that the closest I have come to a real separation was my yoga class, when I notify the school nurse to contact Adam for emergencies.  For mothers, especially those with children who have chronic needs, do yourself a favor: take a break, longer than just a Girl’s Night Out, and don’t wait eight years from diagnosis/onset to do it…

Flax is a four letter word…

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That’s correct. Those tiny, nutritive brown specks found in so many foods trigger fear and danger both in and out of our home. My oldest son Sam is severely allergic to flax and has had a few anaphylactic reactions requiring the use of an epi-pen and, most recently, a very scary trip to the ER. A few weeks ago, I unintentionally “flaxed” my son. How did this happen? How did we even know he was allergic to flax?  Well, I am fairly certain he wasn’t born that way. He has been on a gluten-free (GF) diet for the past ten years, and flax/flaxseed is used to enrich many gluten-free products by adding fiber. It was hard to figure out, but a few years ago we noticed that after he ate certain foods, he developed writhing abdominal pain lasting 6-8 hours, often into the next day. The only common ingredient was the formerly innocent flaxseed.  Then, formal allergy testing showed he was severely allergic and would have to be very careful going forward. We knew that Sam had a milder allergy to tree nuts and some fruits (throat itchiness), but this was a whole new ball game.

Having a flax and tree nut allergy in a person who also has diabetes and celiac disease restricts food choices to about 20% of all GF foods. Shopping is often depressing, especially finding the ingredient in new products that you would otherwise want to try. FDA labeling laws have been enforced for products containing wheat and nuts, but finding the word flax can be like searching for a needle in a haystack. Nobody seems to care about it, and it can take a long time to get a definitive answer when eating anywhere in public, because only the chef knows the ingredients.

As a mother, I do what I have to do. But, what about Sam? It’s scary, annoying, and labor-intensive. He must question each food item and assume nothing is safe, because flax is increasingly being used in EVERYTHING. I stopped taking my children to GF fairs, which used to be better than Halloween for them: They enjoyed running from table to table, sampling delicious treats, including breads, pizza and dessert.  I didn’t even care about their blood sugars on those days.  We addressed that later. The last time I took them to one, Sam’s throat began to itch (probably from a tree nut) and he went to wash it down with some NAKED juice which, it turned out, unfortunately and ridiculously contained flax. This was followed by Benadryl and a trip home.

So, knowing all of this, how could I be so careless? He was on his way to soccer practice, and needed something to tide him over. I made him a sandwich with home-made bread I had been making for years, from Gluten-free Pantry flour mix.  My kids LOVED it. They affectionately called it “Mommy Bread”. Sam immediately reacted with throat itching and abdominal pain. I rummaged through the garbage for the flour package. With my hands shaking , I read it. There it was, the four letter word: FLAX. They changed the ingredients on what had become a cornerstone of my kids diet. We gave Benadryl, and the epi-pen. Sam’s symptoms started to subside. I initially brought him to my pediatric office, thinking I could monitor him there for a few hours, sparing him the drama of the Emergency Room. But, his abdominal pain recurred, and I drove him to the ER. This was terrifying. As he sat next to me in the front seat, his pain worsened to the point that he passed out. At that time, I was less than 10 minutes from the ER so  kept driving as I continually checked for his pulse, and yelled his name so he would mumble, or stir, which seemed to work.

When we arrived, he perked up, was given more Benadryl and Zantac, and stayed another 5 hours for observation. We were home in our beds before midnight.  Sam slept late the next morning, but made it in to school in time for math class.  He is a conscientious student, and he didn’t want to fall behind. For the next 48 hours, I was rocked by many emotions: Guilt, fear, exhaustion, and not the least of all, concern about the future. Having a delayed allergic reaction after an epi-pen administration is not so common, and it makes the future even more scary.

I have been told that I am a “super” mom. That my medically high-maintenance children are lucky to have me.  I have dealt with respiratory emergencies and life-threatening blood sugars; nothing is more unforgiving that an anaphylactic reaction. I gave him flax (Should I have read more carefully? Even though I had been using the same packaged flour for 10 years?). I drove to the ER instead of calling 911 because I wanted to bring him to the hospital of my choice, not necessarily the closest as mandated by EMS.  Was this a mistake? That car trip is seared in my memory as an experience that no parent should ever go through. In the end, all turned out well, and of course I am so grateful.

But what helps the most is the resiliency of my son Sam. We were able to joke in the ER about how I “poisoned” him by feeding him his favorite bread (which he can no longer have).  He insisted on going to school the next day where he told the necessary people about his reaction to some food he ate. No big deal he said. That, for me, is the biggest, best deal of all.

Our Thanks

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With a sense of relief, I handed the box large box of cards to the woman at the post office. “Good for you, you got your holiday cards out early this year,” she remarked. I smiled warmly and thanked her. We used to send out holiday cards each year, dressing the kids in cute outfits, strategic poses and creative greetings for Happy Chanukah and a happy holiday season.

But instead of holiday greetings, these envelopes contained our THANK YOU photo cards from our annual  JDRF Walk to Cure Diabetes. In our seven years  of participating in the Walk, our family has raised over $175,000 to fund important diabetes research. We are proud and deeply grateful for all of the support, and we share this by sending out about 200 thank you cards each year.

Beyond the tangible dollar amount. The Walk represents so much for our family.  Every year, in late summer, we write a letter describing how strongly diabetes impacts our family. We share both the triumphs of our active, growing children along with tales of our daily hyper-vigilance which is necessary to keep them healthy. It’s true, perhaps we are wearing our hearts on our sleeves, but many people appreciate and learn from our letter because allows them to glimpse into our reality and share our positive hopes for the future.

Walk Day itself is inspiring. A few thousand walkers come to support our cause, but I focus on our team, The Battling Brothers. (We needed to change our name from Leo’s Lions after my older son Sam was also diagnosed). A group of 40 plus people join us, including family, friends, and classmates who drag themselves out of bed early on a chilly Sunday morning. I’m still trying to perfect the art of being a good hostess, trying to spend some time with each person, distribute t-shirts ,and make any necessary introductions. The hours fly by because I am surrounded by the people I love, and I know the larger crowd is an extension of this, of people who care so much for a cure. A few years ago, the Walk theme was “Who’s your number one” (person with T1D). Everyone at the Walk cares deeply about someone, and they share a common goal.

Now, don’t get me wrong. I did not always feel this way, and I am definitely not thankful for diabetes. But I am certainly grateful for the amazing people I have met along the way, a second family; people I can call at the drop of a hat for help to pick up my child safely  or help with needed supplies. Last weekend I was with Leo at a birthday party 40 minutes away from home, BG too high to register (over 600),  and somehow we ran out of test strips. As I started to panic, I remembered my close friend from JDRF had recently moved a few miles away. She saved the day by lending me a bottle of strips, and Leo was able to stay for his best friend’s party.

Our happiest day, of course, will be when Type 1 Diabetes is just a memory. Until then, we enjoy sending thank you cards and acknowledging the many generous people who support us and share our hopes for a cure. We still get to show off our family in the photo, and this year I even beat the December Holiday rush!

Happy Thanksgiving to all of you and your families.

Going the Distance

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This spring marked the 10th anniversary of the opening of the Maria Fareri Children’s Hospital. It’s a place which holds special importance to me as I have been there as a physician, a parent, and (since one of my children was born there), a patient. The hospital was built in memory of Maria Fareri, a 12 year old girl from Connecticut who succumbed to rabies, suspected from bats near her Greenwich home. Although she didn’t survive, her parents appreciated the exceptional care they received at the Westchester Medical Center, but also recognized the region’s need for a more family–centered hospital. In 2004, MFCH opened its doors, the “Disney of Hospitals” where patients are treated in child-friendly neighborhoods replete with fire-trucks, trains, and teen computer rooms. Visitors can enjoy a small baseball museum, doll collection and walk-through fish tank. It is a hospital with attractive amenities staffed by excellent clinicians: yet it is a hospital, and therefore a place that you never want to need.

Each spring, families and community members gather to walk in the “Go the Distance” fundraiser on the sprawling hospital campus. The many miracle children are there as well: from extreme-premature babies to children who have survived cancer or near-fatal accidents. When my kids were younger, I walked a few times with my double stroller.  I hadn’t returned for many years until this spring, when we joined a classmate of my older son whose accidental peanut aspiration landed him in the PICU for 7 precarious weeks.

For the years we did not walk, I felt a need to separate. Perhaps it was my hectic family life, my involvement in JDRF, or the intense familiarity of it all. Though I was incredibly grateful, so much of our family time is dedicated to medical care: 24/7 diabetes management, physician visits (at least 20 annual visits to sub-specialists…) it was the last place I wanted to be.

The first time a child of mine was hospitalized was when Leo was 4 months old. It was Christmas Day, I was on call, and he had been wheezing for several days. Despite home nebulizer treatments and steroids, he deteriorated overnight, and so I brought him with me to the hospital, had him stabilized in the ER, and went to round on my patients after Adam made arrangements for my other children and arrived to relieve me. Although it was distressing, I thought it was too early in the morning to call for help from my colleagues, and I knew he would be OK once given oxygen. I was asthmatic as a child, and I had treated hundreds of babies with respiratory viruses.  Of course, it feels different when it is your own child. I found myself  asking the pulmonologist questions like “how bad is it to have less oxygen going to the brain, even if it’s only for a short time?”, knowing full well he would be fine. I suppose it was sheer adrenaline that got me through those 24 hours until my colleagues took over. It was also helpful to have good coffee and muffins from Au Bon Pain in the hospital lobby, as well as the cooperative residents who came to my son’s room to run through the patient list and update me. What wasn’t helpful? The comment of a community physician when I called to update him on his patient and mentioned my son’s admission, he replied “well, now you know what it feels like from the other side” Really??  I was angry and hurt but in time, I knew that he meant well.

The next hospitalization was when Leo was diagnosed with diabetes and went straight to the PICU (see Diabetes Diagnosis ). It was completely unexpected and life changing. It was the first time I heard this phrase: Type 1 Diabetes is no longer a death sentence, but it is a life sentence. We spent the next week stabilizing his blood sugars, learning diabetes management, and adjusting to a new normal. There was a line out the door from visitors and hospital staff including clerks, nurses, and physicians. These were people who had worked with me for a decade.  They brought enough balloons, toys and stuffed animals for a classroom of kids. We felt loved and cared for, but I knew that my relationship with the hospital had changed forever.

Twenty months later, Ben (my middle son) was hospitalized for the dreaded swine flu. What began as cough and fever quickly developed into respiratory distress before our eyes. It was terrifying. We will never forget our panic as we watched his 6 year old body struggle to breathe like a fish out of water. Grateful to be in the hands of the PICU staff, we were relieved when he was put on a ventilator, and even more relieved when he could breathe on his own. It all happened so quickly, at baseline he was my healthiest child, and he improved over the course of a few days. My husband claims he still hasn’t recovered from this hospitalization. I still shut my eyes, shake my head and shudder when I recall that image of him struggling to breathe.  It was traumatic for both of us, and yet once he turned the corner, I was confident he would be fine.

The last hospitalization of my children was for Leo when he was 3 years old. He had a simple gastroenteritis which exacerbated his diabetic condition, and it took a few days to stabilize him in the hospital. We were relatively relaxed this time, there were no surprises, and Leo charmed the house staff by showing his independence while testing his own blood sugar and discussing the upcoming Superbowl.

Although it was a rather routine admission, I left the hospital more melancholy than ever. I thought back to the countless children with gastroenteritis whom I had treated and discharged, most of whom would never be admitted again. For hospital physicians, the pressure of discharge planning begins as soon as the physician examines the patient in the emergency room. In pediatrics, the patients and families are happy that they are healthy enough to leave, anxious to put this experience behind them. We certainly felt this way after Ben had the swine flu. A boy the same age in a neighboring town did not survive the same illness, and once again, we counted our blessings. We watched Leo grow from his initial admission, bigger and stronger before our eyes, and yet at certain times he was so fragile. I couldn’t keep him in a bubble, and yet a simple childhood illness landed him in hospital for nearly a week. Having two children with diabetes and other health issues, I knew our family was more likely than others to spend time in the hospital.

Aside from emergency room visits, we have avoided hospital admissions for the past four years, and we hope to continue this trend. As we walked in “Go the Distance”, I felt grateful for a few things: It was fulfilling to support the hospital and moreover, I was happy to join my former colleagues and update them on my family since our last “visit”. Now we were also healthy and walking. Most importantly, I was able deflect the focus away from our own pervasive medical issues and genuinely celebrate with the “miracle children” who were the Walk marshals. It reminded me of why I became a pediatrician long before I was ready to start a family: I was passionate about caring for children. It is relatively easy to admire their spirit and resilience. Working with these young patients and their families—especially the sickest and most fragile—helped me in an important way. They helped prepare and encourage me to get through my own family’s medical challenges. It is to them and the lessons they taught me that I truly express my gratitude.

Who Rescued Who?

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This is my favorite bumper sticker. I am not an animal rights activist. I have never been to an animal shelter. I am allergic to most domesticated animals with the exception of a few dog breeds. Still, I would not hesitate for a moment to discuss the merits of owning a pet. As a child, I begged my parents for years to get me a dog, and they brought one home for my tenth birthday.  As it turns out, she was a relatively unfriendly schnauzer who we couldn’t keep after she bit and drew blood from a few family members. From that point on, I needed to be satisfied with loving dogs from afar.

About a month after my older son was diagnosed with diabetes at age 9, my husband Adam suggested we get a dog. He had recently been taking the kids to the pet store to play with the puppies and saw how much they enjoyed it. My son was depressed about his diabetes diagnosis. He knew how diabetes impacted our family when his younger brother was diagnosed a few years previously. He HATED the fact that he too would have to deal with wide blood sugar swings, test his BG 12-15x daily, balance insulin dosages, and carefully monitor his already restricted GF and tree –nut free diet. A dog would bring love and distraction into our lives.

At first, I objected outright. Let’s face it; I was also depressed and angry about his diagnosis. Knowing how to manage diabetes in one child doesn’t make it any easier to have two. In fact, the responsibility increases exponentially: more details to remember, more emotions and worry, and more equipment to carry. Why on earth would we want to add a dog?

Adam acted strategically.  He brought me to the puppy store, where the woman brought out a beautiful chocolate brown whoodle (wheaten terrier and poodle, both hypoallergenic). My friend also had a whoodle, and we had spent a lot of time at their house. My son had slept over a few times and so we knew he wasn’t allergic.  As soon as I held the dark furry bundle in my arms, my face broke into an ear-splitting grin, perhaps my first genuine smile in a month. My entire body relaxed. Adam took photos of me with his phone and showed them to me daily to remind me of how happy I was while holding her. We brought Pepper home a few weeks later. Sam had expressed how a dog would make him happy, Leo begged endlessly and the timing coincided with his 3rd birthday. Ben was an animal lover so there no question how he felt.

Just to clarify, I realize we didn’t “rescue” her from the pet store, though I don’t know what happens to pet store dogs that remain unsold for 4 months. The timing was important, and we needed to know the specifics about the breed of dog we were getting. This information is not always available with a dog rescue. I knew that it would be hard, and any dog owner could appreciate this. More responsibility: feeding, walking, training, cleaning. With the exception of one or two friends, everyone thought we were CRAZY, shaking their heads in disbelief when they heard.  They were concerned that we were overwhelmed (which we were) and they were trying to protect us. Our pulmonologist (whom I have known for 25 years) was surprised that “someone who takes such meticulous medical care of her family” made this impulsive decision without consulting him. In truth, I was afraid he would discourage us, and I didn’t want any more disappointment.

Why now? A friend whose dog had recently died supported our decision, “Yes, it will be hard. But a dog can bring love and happiness into a home like nothing else can.” Over the past several years, our family had been through a lot. Although we could monitor the medical conditions (diabetes, celiac, growth hormone deficiency, food allergies), we certainly didn’t expect or welcome them.  Bringing Pepper into our home was a decision we could make. It felt good to make this choice.

We celebrate Pepper’s 4th birthday this week. There is no question as to “Who Rescued Who”. Each of us loves and is loved by Pepper in our own way. She is the first one to greet me when I enter the house and tilts her head sadly when I leave, her soulful brown eyes begging me to return soon. The boys argue over whose bed she will sleep in each night. She is a perfect combination of a coach potato when we want to relax inside, and she runs and jumps with the boys to share their excitement when they play.  Happy Birthday Pepper and thank you for the love, warmth and spirit you have brought into our home.  You were one of the best decisions we have made.   We know how lucky we are to have you.

A Hero to Me

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Nobody ever said it would be easy to raise a child. The exhausting infant and toddler years, the hectic school age years, sibling rivalry, work-life balance. Enter adolescence: the stormy hormonal swings, the autonomy issues, the escalating social and academic pressures. My oldest son is now thirteen. His plate is full with health conditions including diabetes, celiac disease, asthma, food allergies; he simply lacks room for anymore. It is so easy for me to become sad and angry after he screams at all of us and retreats to the cave in his room. I know that all teenagers do this (including him) , but right now he feels awful because his blood sugar is 400 and he is leaving in less than an hour for a Bar Mitzvah party, where there will probably not be any food he can eat. He is so tired of the power bars I send with him. After his bedroom door slams and shakes the foundation of the house, I stand downstairs, wringing my hands. I like to think about the super kid that we and the outside world often see in him: the bright, witty student, the competitive soccer player, the responsible older brother. Sometimes it helps me, but these images are fleeting because there is not much I can do to change the current situation.

On his Bar Mitzvah morning a few months ago, I had the opportunity to share my thoughts about him, to publicly recognize his strengths and celebrate the young man he is becoming. Since that special day, I have read it many times, and this does help me. It allows me recapture the atmosphere of that moment, and to recognize in my heart,  that for all of the times I see his sadness and anger surface, he is much more than that. He is the person I spoke of that morning.

“Before you were born, we didn’t know if we were having a boy or girl. We did know it would be during the Hanukkah season, and so we referred to you as Maccabi, after the brave family of brothers who fought the Syrian Greeks and re-dedicated the Temple.

From a young age you have demonstrated strength and integrity.  Your determination and inner drive is impressive, relentless and at times- exasperating. But it has served you well. In school, you are engaged and inquisitive. You always enhance the classroom experience.  You bring to your relationships a unique mix of compassion and humor:  you are a devoted and caring brother and cousin, and a loyal friend.

Becoming Bar Mitzvah is a transition to Jewish adulthood and a time to accept responsibility. You have not had it so easy up until this time in your life. We know that. We know that you face challenges that people decades older than you do not face. This has impacted you, and has often interfered with your life. But you have NEVER let it stop you. You tackle everything with passion: you may crash sometimes, but you land on your feet. That drive ..YOUR INNER DRIVE  pushes you forward.

So like the Maccabis, who scored a victory although they were far outnumbered, and Joseph in your Torah portion, who faced several obstacles  but managed to achieve so much. You  are a HERO to me. You are certainly an inspiration to many of us here today.

Mazel Tov, and may you continue to go from strength to strength. We love you.”

You can’t have your cake and eat it too

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What is the best way to describe the past 6 weeks?  The pre- Bar Mitzvah frenzy, the magical experience of the day itself, followed by a 2 day hiatus before the onslaught of Thanksgiving and Hannukah, the blizzard on the night of the Bar Mitzvah kid’s party!, finals week at school, the 12 day “staycation” which combined my busy office workload during flu season with extended unstructured time for the 3 boys at home, the uncooperative polar vortex with frigid temps and inconvenient snow-days.   Finally, for the first time in 6 weeks, I sit home alone at my computer and attempt to reflect and process it all: the highs and the lows…the deep pride and the prickly frustration…the gratitude and the disappointment…the solemnity and the chaos.

 “You can’t have your cake and eat it too”

This English proverb almost became a reality for us 3 nights before the Bar Mitzvah, when I received an email from the bakery that they were no longer able to accommodate our order for a gluten-free cake. They claimed that they had a lot of orders for Thanksgiving the following week, etc..  At 10:30 pm, there was little I could do other than curse and send profanity laden emails to my inner circle of friends. I scoured the internet for kosher, gluten-free bakeries in the metropolitan area, which I had done several times in the past few months.

I must backtrack and express why a cake is both so important and so difficult. Since Sam was 5 years old, he has eaten a “different” cake than his friends or family at every birthday or school/friend celebration that he has attended. We make cakes for our children’s own parties, and I can dissect out the chocolate crunchies from Carvel cakes, but it is always different.  For years, we had been saying that for his Bar Mitzvah, we would get him a “bakery-made” Bar-Mitzvah worthy cake with his choice of frosting for his special day. A great-looking cake for everyone to see during the speeches when everyone focused on the family.  Since it was in the Temple, the cake needed to be from a bakery with kosher certification as well as gluten-free. It also had to taste good; instead of being hard to use as a bowling ball, with typical gluten-free density. Several months back, I had found a GF bakery in Connecticut which had just obtained kosher certification. My sons had tried some of their cakes at a vendor fair last year and loved it. But 3 weeks before the Bar Mitzvah I brought home a sample cupcake with frosting, and they HATED it. Apparently it is difficult to make delicious vegan vanilla frosting. We didn’t need it to be vegan, but it was the only bakery that was also GF and kosher. I found 2 bakeries in Manhattan and Brooklyn which would have fit the bill, but they only made cupcakes, no big cake. I finally found a local bakery who assured me they could accommodate my request. I waited nearly a week for them to provide sample cupcakes, which my kids approved.  Perhaps it was the final request for vanilla frosting which put them over the edge, I’m not sure. What I knew when I got that email from the bakery backing out at the last minute, was that the clock was ticking, and I did not want to disappoint my son.

Then I remembered about the woman I had met during baseball season who told me she had left her corporate career and started a cake-decorating business called “Enchanted Icing.” Nancy wasn’t kosher, but she was definitely allergen-conscious, and so I was hopeful. Since I had no contact information, I reached out to her through Facebook, and she replied to me the next morning. “I don’t have an event this weekend, and I think I can help you.”  The next obstacle was getting through to the synagogue. There was a strict policy about bringing in outside food. Our Rabbi was in Israel, and the Executive Director was unavailable until 1 pm. That was a long time to wait for the approval to have an “Enchanted Icing “ cake, provided that Nancy baked everything in the synagogue kitchen  without bringing in any outside cookware, and all of the ingredients needed to be completely kosher and unopened. While I sweated out the answer during that hectic work day, my friends texted me from their work, offering to bring home kosher GF baked goods from various parts of Manhattan and Long Island. One friend offered to knock down the door of the evil bakery and physically harass them! Thankfully, Nancy graciously accepted the challenge, and we were set to go. By that evening, I felt like a completely different person.

Needless to say, the cake was beautiful and delicious, and enjoyed by everyone, especially those with food restrictions.

We also reserved a pool for the evening after the Bar Mitzvah so Sam and a few of his friends could splash around and decompress. Of course, my in Laws called from the hotel as they were checking in to let us know that the pool was closed for construction! But that’s another story…

Coming of Age

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We are in final planning stages of Sam’s Bar Mitzvah. This milestone which represents the rite of passage to Jewish adulthood occurs when a boy turns thirteen years old. Traditionally, the Bar Mitzvah boy is called up in synagogue to read from the Torah.  It is a time when we are surrounded by our loved ones who have often travelled a long distance to share this special time. The celebration afterwards ranges from a simple luncheon to an over-the-top gala event and everything in between. People have been quite creative lately: a boat ride on the Hudson (also called the “Yacht Mitzvah”), a trip to a water park , rock-climbing, and car-racing. Regardless of which you choose, all are flooded with stress of guest lists, invites, favors, decorations and food. Ours will be a luncheon followed by a kids party with DJ and games. We are excited and anxious.

As with all milestone events, we are often struck by the juxtaposition of past events and how they affect  us as the time approaches.  I think back to my own Bat Mitzvah, how hard I worked, how excited I was, and how devastated I was when my grandmother passed away that very morning.  Thirty years later, I can still remember how I first heard the news: standing in the hallway behind my mother, who did not realize I was awake,  as she broke the news softly to someone over the phone. I was shocked and frozen with grief. As she slowly turned around I stared at her: my mother who had just lost her own mother and yet was with me, rather than at the hospital bed in Florida. My Grandma Jeannie had only been ill for a few months, but her long years of treatment for rheumatoid arthtitis had taken a toll on her heart and she deteriorated rapidly. Even so, nobody thought she would pass so quickly. Her final wish was that Grandpa Max would fly to New York for my Bat Mitzvah. He didn’t know he would never see her again.

Because my Bat Mitzvah was a Friday night service and Shabbat dinner we went ahead with our plans, and we rescheduled  the kid’s party a few months later. During the funeral that Sunday, we stood in the torrential rain, keenly aware how the skies opened up and cried for the loss of my dear grandmother .Thankfully, we were surrounded by our friends and family when we needed them the most, supporting us throughout that unforgettable weekend. To this day, I will never know how my mother and grandfather got through it, beside me the whole time. Reflecting back now, I see how my Bat Mitzvah was truly a “coming of age” experience. Although I could not process it then, this was the first time I learned that life made you take the good with the bad, the bitter with the sweet. It was the first time I needed to take a deep breath, summon all my strength, and move forward.

My Sam has had enough unpleasantness in his life, so much so that I really want him to enjoy his Bar Mitzvah. I know the important thing is that he feel prepared, confident, and proud that morning. When people have spoken to me over the years about how frazzled they become with Bar Mitzvah planning, I would think to myself “I know how bad things can get, I won’t get hung up on all the details.”  Hah. As my husband  says..the devil is in the details. I have never enjoyed entertaining or planning parties,  that is not my forte.  With Bar Mitzvah planning there are so many moving parts: the service itself, the preceding Friday night dinner, the kippot, the photos, the programs, the wardrobes, the menu, the out-of-town guests.  It is easy to become overwhelmed. Yet, I remember my promise to myself: enjoy the excitement, enjoy planning a celebration, focus on the significance of this day in Sam’s life. It’s all good.

Once again, I take a deep breath, feeling lucky that everyone is healthy , or at least status quo. That is huge. My biggest concerns are : how will Sam’s BG’s will be that morning. I don’t care so much about the number, but more about how he feels. Sometimes he feels fine when his BG’s are high, sometimes he feels so awful he wants to just crawl into bed (like last night). I am hoping that the adrenaline will boost his energy level regardless of his numbers. Also, how will their GF bagels taste since they are inedible at room temperature, will they be re-heated properly in the oven? Which leads me to the next, less important but still important..How will the centerpieces look?  Will people be happy with their seating arrangements? Will there be an early Noreaster? Will I like my hair? Let’s face it, on some level it all feels important.

15 days to go….   I’ll keep you posted…

Mid-Career Access Road

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The cover article of last week’s  New York Times magazine  “Mid-Career Time Out” (click here for article) by Judith Warner discussed the early 2000’s trend of highly educated women who left prestigious and lucrative careers in order to raise their families. Ten years later, the author discusses the challenges many of these women have faced: difficulty in work re-entry, stress on marital relationships from shifting balance of power and expectations, raising a family on a single, often reduced income due to the recession, and a change of identity and self-worth.

The article interested me because I was a full-time working mother who wanted to work less, especially after the birth my second child. Unable to reduce my hours because that would mean forfeiting our health insurance, I remained a “full-time conflicted working mother.”

My love for children had influenced my decision to become a pediatrician, and I was spending more time with my patients than with my own kids. Due to my hours, I was rarely there for pick-up or drop-off during Sam’s first year of pre-school. He was the youngest student in the school’s history to take a bus to school and back home to our babysitter. Knowing that thousands of women shared my experience  didn’t make it any less painful for me. I was sad that I was missing so much of this magical time in their lives. We made a family decision that after my third child, we would bite the bullet and I cut my work week to 3 days.

Nine months into this improved schedule (which made a huge difference in my quality of life), we found ourselves in the pediatric ICU with Leo in diabetic ketoacidosis. Type 1 Diabetes in an infant requires a degree of hypervigilance that is emotionally and physically exhausting.  Oct 1 2007 was my last day of work until I returned a few months ago. Relating it to the above mentioned article, I would call my experience a “Mid-Career Access Road” replete with potholes, construction zones, and broken traffic lights. For a while, it seemed liked more of an off-ramp, and I did not know when or if I could return to work.

Here is a list of experiences on the Access Road:

1.  Endocrinology sabbatical (still doing it)

2.  Gluten-free shopper and baker (still doing it)

3.  School lunch lady volunteer (cleaning tables and buttering sandwiches which my kids can’t eat-but I got to see them socialize during lunch)

4. Soccer mom

5. Elementary school art appreciation/history teacher (a program run by parent volunteers –don’t              worry-we had training sessions to make up for my lack of art history knowledge)

6. Fundraiser (not too shabby, our family’s team has raised over $150,000 for JDRF)

7. Lab courier (my least glamorous role, I brought a stool sample of my friend’s child to the hospital lab because it was time-sensitive and didn’t need to miss work)

8. Lobbyist (see MDmommy goes to Washington

9. Class mom

10. Board Member (for JDRF and my children’s camp)

11. Mommy blogger

The silver lining is that I was able to be more present in my children’s lives than I initially thought I would. I am grateful for this. Make no mistake about it, I would have given up all these experiences in a heartbeat if it meant my children wouldn’t have to live with their health conditions. I have learned over time that we lack control over when and which challenges confront us. We do control how we react and what we do when they occur.

Not all women have control over their decision to opt-out of the work force. Certainly, no one can foresee all the sequelae of their decisions.

I am merging from the access road back onto the highway. Although the roadwork has followed me, I have become a better navigator. For all the times I may have asked “WHY” or said “ENOUGH”, the obstacle-ridden access road has prepared me for re-entry into my pediatric career.