Not Just a Gadget

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

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

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

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

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

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

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

 


March Madness

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

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

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

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

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

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

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


Gratitude: Top 10 List

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wishing everyone a wonderful year in 2013!


Thank you, Wrightsville Beach

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

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

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

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

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

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

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

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

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

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


Moving Up

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A few weeks ago we celebrated Sam’s “moving up ceremony” from 5th grade to middle school.

We had been looking forward to this day for several years, of course, and so I awoke that morning with many thoughts. I was primarily concerned with the logistics of getting everyone to the right place on time with the appropriate clothing, food, and medical equipment. 90 minutes later, I was out the door with my 2 older sons on my way to drop them at school and save seats in the auditorium. I scurried in with a friend and we remembered the day our children started kindergarten. She reminded me that at that time I was shuffling my feet, hunched over from my C-section with Leo only a few weeks before.

As I entered the auditorium, it was hard to believe this was Sam’s final assembly in elementary school! It wasn’t that time had flown by, or that it seemed like yesterday when they were so little. Not at all. It was more like an endless series of storms mixed with brief periods of calm. Too many significant medical diagnoses, fluky traumas and unexpected surgeries, not to mention the emotional backlash of it all… But enough of that. I forced myself to shut out these thoughts and smile, to be “in the moment.”

I looked around remembering Sam’s kindergarten assembly. Back then, I still had a busy pediatrician’s schedule. Although both the hospital and practice knew I was unavailable for the morning, the burn unit somehow managed to find and page me. I was so aggravated at the time for needing to shift my focus away from my son’s first school performance. Years later, here I was in the very same auditorium, the lights began to dim and people started to sit down. Other than focusing on Sam, my only concern was that my husband, his parents and my parents had not arrived. Where were they? I realized my parents were probably battling bridge traffic, but Adam was never late for these events and his parents (who had flown in from Florida the previous evening) were ready since 7am. Somewhere between the national anthem and the principal’s speech they arrived and took their seats. “I had to drive back home for the gluten free cookies so Sam could eat afterwards”, whispered Adam. I grimaced, but I also understood. Sam would have been very upset. But they were right there on the table! How hard was it to remember???

Back to the ceremony, where we watched the kids perform skits, songs, remembering their years at the school. It was beautiful. The video montage featured each student’s class photo next to a baby picture and hundreds of candid photos of their years together.
There he is, my Sam… an intense boy. He has always been active and spirited with a wry sense of humor, fun-loving but not light-hearted. In preschool he was described as an “old soul” in a young body. Perhaps he somehow knew that by the age of 9 he would have a list of chronic medical diagnoses half his number of years. If you saw him on the soccer field or in a heated discussion in the classroom, you would never know his challenges. Strong and vibrant, compassionate for others, I am so proud of him. I loved watching the pictures of him with his friends, growing up in this school. All good until that picture of the 1st grade Author’s Tea. My stomach did a little flip when I remembered that day. Each student shared their biography which, among other things, included one important wish. Most wished for world peace or an end to poverty. Sam’s one wish was that his brother Leo didn’t have diabetes. Who ever thought at the time that he would end up having diabetes as well? … Again, I forced myself to snap out of it. I looked at him in the front row (he and his friend always manage to be in the front row for these ceremonies). He looked so happy , handsome and ….was that another yawn Sam? How many times have you yawned in the last five minutes? And, why are the two of you smirking up there?

Afterwards we went to the post-ceremony reception where we greeted each other, thanked the wonderful teachers and took many photos before getting on with our day. My immediate responsibility was to pick up 20 pizza pies for the kid’s pool party. A brave mother had invited all 67 kids to her house for the afternoon and I was going to help chaperone.

The kids had a blast at the pool party. It was a nice way for the parents to spend the afternoon as well. For me, it was a lot different than rushing back to do a consult in the burn unit. Don’t get me wrong-I would give anything, work anywhere for Sam to not have diabetes. But in this situation I was glad I could help him figure out the carb count for his food, make sure he had his lactaid pills and gluten-free pizza and protect his insulin pump from the heat and water. He probably could have done well enough on his own, but this was a special day for him. He had so much to think about all the time. I wanted to simplify things so he could just have fun.

Then, soon enough, it was time to pick Leo up from school, prepare dinner, and get the boys out in time for their evening baseball playoff game.

During the baseball game, I was able to relax and reflect on the day’s events. It was a great day for Sam and for all of us. As a bonus, the boys won their game, landing a spot in the championships. And I was a parent of a middle schooler. How did that happen?


Top 6 supportive things to hear when….

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

6.    I’m sorry

Brief but sincere and sufficient

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

Same idea, well received

4.    That sucks

Call it like it is

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

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

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

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

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

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

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


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.