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!


Top 6 supportive things to hear when….

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

6.    I’m sorry

Brief but sincere and sufficient

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

Same idea, well received

4.    That sucks

Call it like it is

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

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

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

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

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

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

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


Looking for trouble…

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

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

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

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

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

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

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

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

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


That darn 100th day of school!

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

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

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

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

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

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

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

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


Just for an hour…

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

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

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

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

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

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

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

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

 

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