This past Yom Kippur, as my 4-year-old son and I were walking into shul, I was explaining why Mommy and the other adults were fasting. I said: “And when you’re 13 …”
And then I stopped, realizing that he will probably never fast on Yom Kippur.
Two years ago, the day before his second birthday, Jonah was diagnosed with type 1 diabetes. We were visiting my parents in Maryland. He had what we thought was a nasty stomach flu, but two days later, he was so sick that he was airlifted to D.C.’s Children’s National Medical Center. He was in full-blown diabetic ketoacidosis (DKA), an acute, life-threatening complication of diabetes. Basically, his body had started to shut down.
When they came to the pediatric intensive care unit and delivered the diagnosis, it was the happiest I’ve ever been … because it meant he was going to live. Little did I know then, sobbing with relief, that life, as we knew it, would never be the same.
Having a type 1 diabetic child is like riding on a relentless roller coaster ride every single day; sometimes he’s up/high, and just as quickly he can be down/low. It’s like being a tightrope walker, trying to balance that long pole and not fall … because there is no net.
Or rather, I am the net.
As Jonah’s pancreas no longer produces insulin, I am his pancreas. It is my job to calculate and administer the right amount of insulin to sustain him, to not let his blood sugar get too high — which, long-term, can lead to organ failure, blindness, etc. — while making sure it doesn’t go too low, which could send him into a seizure, a coma or worse. The only thing predictable about this disease is its unpredictability. And the fear.
Type 1 diabetes is a disease in which the immune system destroys insulin-producing cells. The 15,000 children diagnosed each year will never outgrow this dangerous and chronic disease.
Yet other than the plastic tube running from my son’s tush to his insulin pump pack, worn on his waist, Jonah looks like any other healthy preschooler — tons of energy, enthusiasm and stubbornness. He’s an easygoing, sweet boy who loves construction vehicles, building forts, cutting plants, crashing into things, laughing his glorious laugh and snuggling in with me to read a book.
But he is not like other preschoolers. I cannot drop him off for a play date. He cannot sleep over at a friend’s house. He cannot be a carefree kid. And I cannot be a carefree mom (not that I ever was).
In order to keep his blood glucose levels in range — or attempt to — his nanny, his preschool teachers and I (a single mom) check his blood glucose level via a finger prick about 10 times a day, on a good day. His little fingers, now covered with an ever-growing colony of tiny dots and callouses, have been pricked about 10,000 times since his diagnosis. Ten thousand times. He doesn’t cry. He doesn’t complain. He just holds out a finger, sometimes winces, then asks: “Am I high or low, Mommy?”
Everything impacts his glucose numbers: what he eats, what he doesn’t eat, if he exercises, if he doesn’t get enough exercise, if he eats too many carbs, if he eats too few carbs, if he sneaks a few strawberries, if he refuses to eat after getting insulin, if I miscalculate and give him too little or too much insulin, if he has a growth spurt, if it’s hot out, if he has a cold, if he jumps around a lot and disconnects his tubing, if the needle doesn’t go into enough fat on his tush, if he’s at a birthday party and has a small piece of cake (with most of the icing scraped off).
And those glucose numbers impact everything. If he’s too high, he can become belligerent, cranky and thirsty. When he’s too low, he can be listless, shaky, ravenous.
Because of these fluctuating factors, I strictly monitor his food intake — a tangerine, 10 carbs; milk, 11 carbs; graham crackers, 6 carbs; a slice of pizza, 40 carbs (and a night of crazy-high numbers) — with Jonah never knowing what it’s like to just eat whatever he wants, whenever he wants. Recently he said to his nanny, “Look, Mommy gave me a chocolate chip cookie. Now I’m just like the other kids.” And my heart broke just a little bit more.
At night, blood glucose numbers can go low (though sometimes inexplicably high, too), so every night for the past two and a half years, Jonah’s blood glucose gets checked at 11 p.m. and 3 a.m. Sometimes my amazing nanny stays over so I can get a good night’s rest, but Jonah has not had a night of uninterrupted sleep since he was diagnosed. I worry how this will impact him in the future when he goes to elementary school and beyond.
Recently, Jonah told me he was hungry while we were driving. We were running late, and in order for him to eat, I would have needed to pull over and check his blood sugar, then give him insulin, via his pump, if he was high. Instead I asked him if he wanted to try and test himself. Since day one, he’s handled his diagnosis with inspiring grace and goodness, and he’s been helping to test for a while, but never unaided.
“Sure,” he said, so I passed the diabetes kit back to him. I watched through the rear view mirror as my little boy cleaned his finger with alcohol, put the test strip in the meter, shook his finger to get the blood flowing, pricked his finger, pushed the tip of the test strip into the drop of blood and read the results: “1-1-3, Mommy,” he said.
I teared up at that moment, proud of my son, but knowing that was just the first test of thousands he will give himself. Sure, high-tech devices like insulin pumps, continuous glucose monitors and, hopefully, in the next 10 years, an artificial pancreas, are breakthroughs that lessen long-term complications. But they are not cures — they just makes it possible to keep people like Jonah alive.
That’s not good enough. We need to find a cure.
A few weeks after Jonah’s diagnosis, still reeling but determined to help rid my son of this disease, I formed Team Jomoki , and gathered friends and family to walk at the annual Walk to Cure Diabetes sponsored by JDRF (originally Juvenile Diabetes Research Foundation), the leading global organization funding type 1 research. To date, our team has raised nearly $100,00. And this year, on Oct. 27 at the Rose Bowl in Pasadena, I plan on adding to that amount.
Type 1 diabetes is a nasty, confounding, insidious, inscrutable illness. But with continued research, maybe one day, in the not too distant future, there will be a cure. And then my son will fast on Yom Kippur and complain about it … just like all the other 13-year-olds.
For more information, to donate or to join the walk, go to http://www2.jdrf.org/site/TR/Walk-CA/Chapter-LosAngeles4041?team_id=131371&pg=team&fr_id=2454
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