Top 6 Most Unhelpful Things to Hear After…

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I recently stumbled upon this list I wrote 6 years ago:

The top 6 most unhelpful things to hear after your child is diagnosed with celiac disease.

Wow, was I angry! I did not record the exact date on which I wrote this list, but I know it was around 3am and within weeks of my sons’ diagnoses of celiac disease (3 and 5 years old at the time).

We’ve all been there. It’s the middle of the night, and we lie in bed stewing about our current crisis. There are no distractions. We are free to analyze the painful remarks and fantasize about the missed opportunities for great comebacks.  I myself was angry, worried, frustrated, and pregnant.

6.  Well, it’s really just a diet.         Just a diet?  It is a life-long food restriction with potential medical consequences.  

5.  It’s  good that you’re also kosher so you already know about food restrictions.        Huh?

4.  It could be worse.      Ok, I am a pediatrician. I have treated children with devastating disease and traumatic injuries. Do they think I don’t know it could be worse?

3.  It’s  good that at least they both have it.       Really? How is that good?  Maybe  it’s easier to get dinner on the table, but what’s good about having 2 kids with a chronic health condition?

2.  Wow, that’s so interesting!         Remarks from a colleague. Interesting?? It sucks.

1.  Well maybe this will make you more empathetic as a pediatrician.     What?!! I don’t claim to be perfect, but I know that as far as empathy goes, I rank pretty high.  And besides, we’re talking about my own children. How does this help them? If I were an oncologist, would it be easier if my child was diagnosed with cancer?

Over the past 6 years the medical issues of my family have increased in both numbers and acuity.  I have learned to accept these awkward remarks with grace. I believe that people want to say something, anything, that can ease a painful situation. So, I have learned to look upon comments like this as unhelpful rather than stupid or demeaning. Depending on the setting and my mood, I usually take a deep breath and nod or smile faintly. But I’m glad I found this list that I wrote years ago. Looking back, I see that these were well-intentioned comments made by people who wanted to make me feel better, regardless of how strange or irrelevant they sounded at the time. I am so very grateful to have these people in my life (well, most of them anyhow :-) ), and I get what they were trying to do.

With the exception of #1, the empathy comment, that is. Clearly that one touched a nerve…


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.