Five Years Better?

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Five years later.  My oldest son Sam was diagnosed with diabetes five years ago today.  I remember it vividly-that hazy, humid morning when Sam decided to impress his friends in the camp carpool by “playfully” checking his blood sugar in the car. The meter surprisingly read “400.” I kicked the four other boys from the car, and dealt with Sam’s condition as best I could: Phone calls to Adam and the endocrinologist, the trip down the Naomi Berrie Diabetes Center at Columbia.

Life, once again, interrupted by another medical diagnosis. Our family had just reached some degree of stability. Four year old Leo (who had been diabetic for almost three years) had a counselor to monitor his blood sugar at a day camp, Sam was returning to camp for the first day after a boating accident left him with 30 stitches above his eye. He was excited about his trip to the water park the following day.

We were about to put our house on the market- bigger home- one button push away that very morning. Contract with broker signed, photos taken, open house scheduled. Of course, health is paramount, this was canceled, indefinitely.

Five years older.No age is “good” to develop diabetes. The fluctuating blood sugars are not good for the human body. This we know.  When Leo was diagnosed with diabetes at 13 months, some people commented,  “Well, it’s better that he is young, he won’t know anything different” . Where did that leave Sam, a nine-year old already dealing with a diet restricted by celiac disease and multiple food allergies? He had already lived through almost three years of our meticulous carb-counting , blood testing and site-changing with his brother. He already hated diabetes.

Five years more exhausted. Diabetes is pervasive and all-encompassing. Other adjectives are relentless, unpredictable, inconvenient, and just plain hard. When it comes to multiple siblings in a family, one plus one is more than two. Although this shouldn’t happen, we sometimes forget who was bolused for breakfast, who checked most recently and was corrected, when was the last site change, etc…

I was already exhausted from the 24/7 care of a rambunctious little boy with brittle diabetes, and I could not imagine how I would manage two children. My energy was sapped, my mental faculties maximally challenged , my emotions drained. The well was dry. I dreaded the days and weeks ahead which I knew would involve:  more diligent monitoring, always anticipating, thinking like a pancreas. My friends and family, always supportive, offered encouragement “You can do it, you’ve already done it.”  “One foot in front of the other”. What else could they say?

But Still Standing…  Five years ago, there was no light at the end of the tunnel. But aging has its advantages. My children have become more independent and resourceful. Sam manages his own blood sugar and can change both his pump and monitor sites, except when he doesn’t.  Remember, he is a teenager. At sleepaway camp, he must do everything himself, while at home he prefers our assistance. Leo can both test himself and administer his own insulin. This is HUGE! At eight years old I can finally drop him off at play dates (although birthday parties are still tricky). It can be dangerous  because he now thinks he knows EVERYTHING. “Is there anything more I need to learn about my diabetes, Mom?”  He understands percentages and carb ratios more than most people understand multiplication, but too much insulin can cause scary low blood sugars, so he still needs adult supervision. The worry factor hasn’t changed. In fact perhaps it has increased, since they are beginning to make their own decisions.

As for me, aging stopped being fun a while ago, evident in my changing vision prescription, deepening crow’s feet and laugh lines, and more frequent trips to the hair salon. On the flip side, my children’s  growth has enabled me to go back to work, and spend more time with my husband and friends, as I begin to reclaim my life.

Five years later IS better, and diabetes research points to a more favorable future in next decade. In the meantime, I have three boys to get through adolescence. I brace myself for the odors, the mood swings, the heated arguments… But not before my power nap, followed by a large cup of coffee.  Definitely feeling five years older, but better as well.


Life’s Tough… get a helmet

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Several years ago, I bought this sign from a kitschy store in the small Pennsylvania town where my children attend sleepaway camp. It was half-way through my one week stint as a pediatrician, where I treat the injuries, illnesses, and psychosomatic pains of campers and staff. I laughed out loud when I read this sign, recognizing both the absurdity and appropriateness of the motto. As a general pediatrician for the past 17 years, I preach anticipatory guidance at most office visits.  As a mother, I do my very best to comply. Car seats, helmets, protection from sharp corners, outlets, and choking hazards.  A tragic case I saw in the ICU left me with a balloon phobia, so my children only had mylar balloons (no latex helium) until their fifth birthdays.

The sign rests in the most conspicuous part of my home, on my entry bureau as a daily reminder. What exactly does it mean? I both appreciate the sign and resent it. Chronic health conditions such as diabetes, the most difficult part of my children’s existence, could not have been prevented by a helmet, or full armor for that matter. Neither could they have been prevented by my meticulous pre-natal diet with food restrictions, followed by breast-feeding. A ski helmet did not protect my mother from a traumatic brain injury, which required surgery and prolonged rehabilitation. It clearly would not have helped Sam with his multiple injuries this past summer, for which he spent several weeks in a leg and arm cast. Most recently, a helmet did not protect little Leo from breaking his wrist while skiing last month.

Metaphorically, I love displaying the sign. The importance of developing a thick skin to deal with life’s challenges should not be lost on anyone, including myself. We prevent what we can, we hope for the best, we walk outside and face the many obstacles in our path. I have tried to teach my children that diabetes should not prevent them from doing or accomplishing anything. My 14 year old son just left for an eighth grade trip to Israel for two weeks. A year ago, even six months ago, we did not think this was possible. It was too complicated: diabetes, celiac disease, multiple food allergies, growth hormone deficiency and asthma. No helmet could protect from him the myriad complications which could occur from any of these while he was away.  Thanks to technology, we armed him with as many gadgets as possible: a continuous glucose monitor, an extra insulin pump, even a new incredible device called the Dexcom SHARE, which allows us to view his blood sugars  from our iPhone as he SLEEPS while he is half way around the world. Although it only works part of the time, it is an extra cushion to prevent the near disaster of what happened on his Washington DC trip in April (see: Not just a gadget).

More importantly, he is armed with the fortitude and problem-solving ability he has developed over the past few years. That’s his real helmet. Both he and we know that problems will arise. He is sharing this amazing experience in Israel among his closest friends, We hope he won’t let his frustration and discomfort (which we have read by text already) ruin his time. “It’s hard doing everything myself, being in charge of everything. I never get to relax.” This trip will empower him and help him realize he is able to accomplish all he sets out to do. That is what he and we want.

But dammit, he better tie his shoes on those long rugged hikes, and whenever necessary, he better wear an ACTUAL helmet…