It’s 12 am and I am smearing Nutella on my sleeping son’s lips, desperate for him to open his mouth. This isn’t the first time I have done this.
The first time, he smacked his lips like a cartoon baby bear and smiled. Now, because the chocolate sleep-snack has begun to lose its novelty, Judah thrashes his head from side to side, threatening to leave dark brown smears on both sides of his Mickey Mouse pillowcase. I catch his head as gently as I can, and coax him: “Just one spoonful.” Then I add, because if he’s remotely awake he’ll appreciate it, “Of sugar.” We are in our Disney classics era.
I remain in disbelief of the way I have been living, the behaviors that have become normal, since Judah’s type 1 diabetes diagnosis.
Three months ago, this would have gone against everything I thought I would do as a parent—sugar after he’s brushed his teeth? Sleep-feeding a 5-year-old? What fresh hell could have possibly led to this?
I make a mental note that tomorrow, before we have guests over, I’ll need to move the jumbo tub of chocolate from my nightstand. Those who didn’t know any better might assume we were using it for an entirely different activity.
My children have a copy of Sonia Sotomayor’s picture book, Just Ask! The book is really a beautiful celebration of diversity—each page features a different child explaining something unique about them and what other kids might notice. Sotomayor gives voice to characters with autism, cerebral palsy, ADHD, Tourette’s—truly an amalgam of representation.
And there is a page featuring a child with type 1 diabetes. The child’s dialogue reads something like, “I prick my finger before each meal to check my blood sugar! And then I give myself a shot after I eat.” “WHAT!” my children responded, scandalized. “Shots every time you EAT?!”
“He is totally used to it by now,” I explained, while privately thanking my lucky stars—page after page—for the aspects of their health that my children took for granted.
At Jewish weddings, a bride and groom are considered at their holiest state when under the chuppah—the wedding canopy. Like Yom Kippur, the holiest day of the year, a married couple on their wedding day has a direct line of communication to the Divine. And my husband and I made use of that moment. We said two words over and over to each other as we stood in front of our friends and family: “Healthy kids,” we mouthed. We missed some of the rabbi’s words because we were starry-eyed, staring at each other, and because of our focus on this phrase. “Healthy kids.”
In the last eight years since becoming a parent, I’ve frequently recalled that moment, and felt bowled over with humility.
When I was fortunate enough to not only get pregnant, but successfully survive the experience AND witness their perfect newborn selves, I felt inexpressible gratitude. I traced my fingers over their perfect cherubic cheeks; I watched their growing bodies with amazement, marveled as they ran and danced and played. I celebrated my children learning to walk, dance, swim, ride bikes, swing from one monkey bar to the next. I listened to their sing-song voices formulating interesting questions and taught them how to read. And all the time, I remembered my wedding day plea. Healthy kids.
And yet, in December, we could have lost our son. His symptoms were slight but noticeable: frequent urination and thirst. A bit of weight loss (but he was growing taller!). Then he seemed sick, but we’d been around some sick kids, so I chalked it up to a virus. As he became more and more lethargic, I started to worry in earnest. Something wasn’t right. I brought him to urgent care, and within an hour we were in an ambulance to the ER, and then transferred to the pediatric ICU. Another day—maybe even a few hours—and his diabetic ketoacidosis could have been fatal.
I’m still grateful every day for the care we received, and for my son’s resilience. But he’s still in the early stages of his type 1 diagnosis, when sometimes his pancreas is making insulin, and sometimes it’s not. Management is a 24/7 job. His blood sugars are never level—he’s always heading too high or too low. I am awake most of the night, standing guard. When he’s at school, about 10% of the time, I am in the parking lot. Because I’ve noticed he’s dropping too fast, and I want to be there just in case no one else is on their toes. The experience is terribly alienating.
Somehow, though, despite the lack of sleep and exhaustion of substituting for a vital organ and the many injections and finger-pokes and carb counting and Nutella and juice boxes, Judah is (go with me here) healthier than he has ever been. Emotionally, I mean—he’s never getting that pancreas to make proper insulin again until there’s a cure. But we had a moment recently that revealed to me that I need to give this kid all the credit in the world for the explosion of maturity that this disease has demanded of him.
It was about midnight, and I was headed into his room with a syringe in hand. Though it was more common for me at night to be treating low blood sugars with something sweet, that particular evening, Judah’s blood sugars were high enough to warrant a corrective dose. I winced when I prepared his skin and saw him start to stir—it would be jarring for him to wake from a deep sleep to a needle. Sure enough, he opened his eyes and immediately howled with dread. But then, before I had time to say anything, he took a breath and reached behind his back. Like a magician, he produced his reading light, and proceeded to lift his shirt and shine the light on his stomach so I wouldn’t have to fumble in the dark. “There you go,” he said simply.
I was floored. “Thank you, sweet boy,” I said, and delivered the injection, which was now fast and seamless. Before turning to leave, I added, “I’m sorry to have to do that.”
“It’s not your fault,” Judah responded, without hesitation. Then he rolled over and went back to sleep.
My eyes filled with tears.
He is 5 years old.
Maybe the healthiest kids, I’ll tell mine the next time we pull Just Ask! off the shelf, are the ones who can handle a barrage of daily obstacles and still get their math homework done. Because when I stood under the chuppah, the image I had in my head was simple. I pictured children who were smiling. Well-adjusted. Who had interests and passions and ideas, and the ability to explore them. Who didn’t let setbacks—big or small—knock them off their path.
That’s my goal for all three of my kids. And while I could do with a bit more sleep and fewer Nutella-smeared pillowcases, I’m still grateful.
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