How Sugar Nazi made me cry (shockingly, not just because of her title)
Posted on April 22, 2012
Having a child with special needs might be a bit like perpetual pregnancy.
When you’re visibly pregnant, strangers feel entitled to ask the most personal questions. Somehow, your burgeoning belly becomes a permission slip to interrogate.
Sure, people mean well. They are well-meaning in their curiosity to learn details about your physical well-being, the well-being, gender and activities of your unborn child, the well-being of your diet, the well-being of your waistline, the well-being of your blood sugar, the well-being of your swollen sausage-like stumps that obliterated any semblance of ankles weeks before…
So you get through it because you know people are, generally, good. And then you give birth. And you venture out into public with your belly and your baby, this time detached from one another even if your belly seems to be clinging to its pregnancy state in some torturous ritual of nostalgia. (Did you see that? See how I can blame my belly for itself?)
And you realize the questions have changed. You have forgotten that a child with Down syndrome tends to have physical characteristics that act as red flags for those same well-meaning strangers.
“Is that a Downs baby?” you hear from across the banana pile. “Oh, I just love Downs babies!”
OK, first of all, this is MY baby. Downs doesn’t own this baby. And by the way, the dude who discovered this condition was named Down, not Downs.
I know. People mean well. I’m really not that crabby all the time. In fact, 99 percent of the time, I really welcome the interaction and the questions, because often it’s prompted by a heartfelt connection and fond memories or touching stories.
It’s just that, I’m not always prepared. Meaningful moments sometimes happen when I least expect them. Such as when I’m registering for Camp Diabetes.
I developed gestational diabetes with Charlie, my toddler, about a week before he arrived (which was seven weeks early). I barely had time to register that the rest of my pregnancy was going to be sugar-free when the rest of pregnancy wrapped up.
With Emma, I developed gestational diabetes at about 25 weeks and delivered at 37 weeks. That leaves 12 weeks, or three months, during which I was monitoring my blood sugar, muttering obscenities at the vending machine at work and struggling to get my levels under control. I ultimately had to inject insulin three times daily.
While my mother insists this does not hurt, I will tell you that when it does – when the needle hits a blood vessel or the insulin decides it feels like zinging you – the burning is like a nice little bee sting and hopping around and swearing only helps psychologically.
Once I began insulin injections, I immediately became a stalking victim for the local Diabetes Sugar Nazi Nurse named Melinda (I like to call her Sugar Nazi for short). While the Soup Nazi randomly refused patrons their soup order, Melinda religiously refused me anything with sugar and most things that come in only the color white. (Adding enough cheese to your mashed potatoes to create a sunset-like golden tone is apparently cheating. Sugar Nazi learned quickly that she needed to be very specific with me.)
The first time I met the Sugar Nazi, I almost didn’t hear her introduction because I was so mesmerized by her perfect spiral curls (coincidentally, the color of cheesy mashed potatoes – once you know you can’t have something, suddenly people’s features become sundae toppings and carbohydrate oases). She has sharp features, but her strong jaw line and pointed nose are softened somehow by her perfect spiral curls. Perhaps I was a bit obsessed, but as someone who has naturally frizzy hair that occasionally forms nice little curls, I’m always fascinated to learn how someone else has achieved their spiraldom.
Anyhoo, I quickly became entranced by her over-the-top energy. I truly had never met anyone as excited about controlling blood sugars as my Sugar Nazi. This was going to be fun! She insisted. The type of diet management I needed to follow might actually prompt weight loss! Healthy weight loss!
I probably should have told her she had me at weight loss, but I must confess I didn’t make it easy on Sugar Nazi. She was so darn enthusiastic and supportive and excited, I kept trying to come up with complex combinations of foods so she could formulate how many bites of each I could have before my blood sugar levels would skyrocket. She was good, that Sugar Nazi.
For some reason, Camp Diabetes (an exaggerated term for a three-hour counseling session during which I learned how to properly monitor my blood sugar and also inject insulin and plan meals [yes, I know I don't plan meals, but I had to give her something to believe in!] kicks off with a brief questionnaire. One of the first questions was, do you have stress in your life?
I laughed so hard, snot flew out of my nose. Sugar Nazi never blinked (but she did retrieve a hefty box of tissues). Did I have stress in my life? More like, did I have life in my stress! I gave a quick rundown:
- Working for a large company undergoing quite a bit of change
- Managing communications for its new business strategy – and my uninformed optimism was quickly evolving into overly informed trepidation
- Married to my husband for almost two years; knew him for almost more than two years (actually, by that point our marriage wasn’t so much causing stress, but why not throw it in there; as I write this, The Husband is just boarding his Flight Back from Funland, a weeklong vacation from responsibilities and, likely, any substantive shower)
- Did I mention we have a son with Down syndrome?
Sugar Nazi looked at me sharply. Or maybe she just looked at me. In a moment’s time, the professional relationship we had formed melted into a conversation you might have with your dear neighbor or a colleague you’d known for years and only finally started to really know.
Melinda had a sister with Down syndrome who had passed away several years earlier, at age 45. Now, that’s rather young for a person with Down syndrome. Nowadays the life expectancy of a person with Ds is 60.
But as Melinda continued to talk — with the same amount of enthusiasm as she had introduced dry wheat crackers (which was a LOT!) — her voice became so filled with love.
“She just taught us so, so much,” Melinda reminisced. “I will never forget this one time… .”
Her sister’s jacket had been stolen from school, so she had walked home in the cold with no coat. “I cannot believe someone stole your coat!” Melinda exclaimed when she found her sister standing, shivering.
“Oh, I don’t know,” her sister replied. “That person must have been really cold and really needed it.”
Melinda was dumbstruck. Her sister’s perspective was so… innocent. Loving. Accepting. “We all just learned so much from her, every day,” Melinda said.
By now, I needed a tissue for more than snot. It was so easy to picture my beautiful unborn Emma sitting across from someone years from now, sharing memories of her brother, Charlie.
I hoped Charlie would have such a pure heart. I hoped Emma would embrace it, cherish it and share it. I hoped we would all live forever in some sort of Utopia. No mother wants to even allow the consideration that she will outlive her child. No. Just… NO.
The Sugar Nazi’s and my relationship became very different very quickly.
She called me almost daily to check my sugar levels and recalibrate my insulin doses. “I’m not giving up!” she would almost cry into the phone. She was so concerned and so caring.
I’m not silly enough to think Melinda didn’t take the same care in every patient, but I knew we shared something special.
Every time she called, she asked about Charlie. At Halloween, I emailed her a picture of my adorable little skunk resting atop Mt. Belly as he blinked into the camera’s flash.
I haven’t spoken to Melinda since I had Emma. My last “check-in” at Camp Diabetes coincided with her day off. I think of her from time to time and know someday I’ll make sure Charlie meets her.
The difference between mother and son is that my dear boy will be just as excited about Sugar Nazi’s dry wheat cracker.
Do you have a story about someone with Ds who touched your life? Please share it with me. Your stories get me through some tough days, and I promise I won’t get snot on you.