Ever notice how when life runs too smoothly — so routine and lacking in drama that it begins to border on the mundane— shit happens? Usually it’s something small, if seemingly insurmountable at the time. But rarely (if you’re lucky), it is something so serious your whole world changes.
I was just having those I-should-really-get-back-to-(paid)-work vibes, when my son started having “asshole episodes.” He would suddenly become irreconcilably irritable, arguing about the simplest of tasks (getting dressed, refusing to clean his room or take a shower, literally crying over spilled milk). I started half-joking that my usually happy, friendly and empathetic boy had turned bipolar.
A few Sundays ago, I took him to a birthday party and watched him tread unchartered non-compliance territory: The moment we walked into the party, he slumped over like a zombie; his face and body went slack. He refused to move, except to sit next to the adult observers — you know, the parents and grandparents who calculated there was not enough time to drop off, go home and do anything worthwhile in between so might as well just check their phones for 90 minutes and eat leftover cake.
I thought he was mad we were late (I got the start time wrong), or didn’t want to join a playroom party in progress, admittedly loud and chaotic in it’s age-appropriate lack of organization. Then I assumed that he was hungry. But he refused the snacks on offer, with a side of contempt.
After trying in vain to get him to join in the festivities by alternating between coaxing and threatening, I watched as he shot death stares at close friends who similarly tried to pull him into the fray. I caught the birthday girl’s sweet grandmother trying to lift his spirits with small talk, asking him questions to engage him. Instead of answering, he just got up and moved two seats away from her. Whoa.
He had no fever, was fine just before we arrived and had been exhibiting a crazy appetite of late that I mistook for a growth spurt. So when a concerned parent asked if he was sick, I answered confidently, “No. He’s just being an asshole” and wondered cynically if his inquiry was more an accusation than a question.
After a few days of on and off behavior like this, I took him to the doctor, who after finding no evidence of illness, suggested it might be early onset flu. He suggested I take him home to get some rest. As we were getting ready to leave the office, I mentioned that he peed a lot one day the week before, figuring I could save myself a future email or appointment. I thought it was totally irrelevant to his current symptoms (though did remember once hearing that frequent urination could be a sign of diabetes).
A why-not urine test and subsequent finger-prick test later, the doctor suspected my son might be experiencing DKA, diabetic ketoacedosis, a complication from diabetes. He ordered us to the emergency room. Turns out, my son’s blood sugar was so damn high that his body was producing acid. There was ACID in my boy’s bloodstream. For a better understanding of diabetic ketoacidosis, see below from Mayo Clinic:
Diabetic Ketoacidosis (DKA) is a condition in which the blood becomes highly acidic as a result of dehydration and excessive ketone (acid) production. When bodily fluids become acidic, some of the body’s systems stop functioning properly. It is a serious condition that will make you violently ill and it can kill you.
The next sixteen hours in the emergency room were a whirlwind of needles and repetitive questions, as doctors struggled to push his blood sugar levels down in order to fight worsening symptoms and stave off coma. Poor child was starving — he hadn’t absorbed nutrition in weeks (thus his nonstop hunger), and was being refused food until his blood sugar levels went down precipitously. The minute he was out of the danger zone and out of urgent care, my intensive, if sleep-deprived education on Type-1 diabetes began.
It’s also where my gratitude began. I was so thankful my son had told me about that day of frequent peeing because most kids don’t share that kind of information. This is probably what kept him from progressing into a coma — or worse.
The hospital doesn’t give you a chance to feel sorry for yourself. There’s almost always someone worse off, literally just next door. In fact, just as I started feeling sorry for my son and myself for the lifetime of needles, interrupted sleep and lack of alone time ahead, I got some quick and dirty perspective: I saw kids undergoing cancer treatment being rolled down the hallways with exhausted and devastated parents trailing behind. I quickly realized how lucky we are in comparison: Chronic illness is manageable; fatal illness is not. We got off easy.
But it’s not — easy.
It’s not easy chasing around a 6-year old to give him a shot four to five times a day, or holding a recalcitrant little finger upright and steady while you do a finger prick he deems unnecessary, but you know is. It isn’t easy squeezing the sufficient amount of blood onto the strip while he tantrums and kicks. And it’s not easy to hear your boy confess resignedly, between earnest whimpers:“I can’t keep doing this my whole life.”
Technology helps. But it’s far from perfect. The Dexcom, a continuous glucose monitor (CGM) which keeps tabs on his blood sugar levels 24 hours a day, promises to save users from dreaded finger pricks. But it has a maddening 30% range of error, which can mean the difference between a dangerous low blood sugar requiring treatment and him being just fine and us panicking for nothing. So we prick away anyway, to make sure.
Before he got the Dexcom, it wasn’t easy staying up until 11pm on exhausting days and waking up at 3am to check his blood sugar to make sure he doesn’t go low overnight, rousing him from sleep with a surprise finger prick. Now that we have the CGM, which monitors his numbers all day long, we don’t have to get up proactively. But we do get jolted from sleep multiple times a night by predictive alarms warning he might go low, as opposed to the urgent-low alarms which legitimately command immediate attention. You see, when blood glucose levels are high, you have years before there is serious damage; with lows, you have mere minutes.
When we do need to give him a shot to combat hight blood glucose levels, it isn’t easy getting a sleeping little warrior to cooperate, or keeping his fruitless screams of resistance from waking up his sister next door, who has trouble falling asleep once a night, much less twice.
It’s not so easy when said daughter feels like she’s playing second fiddle to the constant patient. Or starts dreading meal times together — which we all used to cherish. Between all the diabetic jargon (grams, carbohydrates), the ratios and calculations, the shots, and the meticulous record-keeping that now precede a family dinner–and all the nagging on our part for him to finish all his carbs (not to mention his resistance to do so)–“How was your day” and “roses and thorns” somehow get lost in-between.
But then there’s a lot to be thankful for. I’m thankful for a husband who requires far less than the recommended eight hours of sleep per night, an allotment I can’t seem to function without. Thankfully, he can lapse back into a roaring, snoring state within seconds of hitting the pillow after playing nurse (and pancreas) to our son.
I am thankful for our school nurse, who is so attentive, it can border on suffocation. While I love how seriously she takes his care, I worry that too often she interrupts class or recess to force-feed him carbs so his numbers don’t go too low for her liking; essentially waterboarding him with liquids when they go a little high. And then keeping him in her office to observe him at length if either fail. And all this, in the midst of the inevitable flow of kids who pour into her office with minor scrapes or stomach aches from eating all-white fiberless food for lunch.
I am thankful for the friends and family who kept checking on him and us after his diagnosis. The ones who called, visited, sent boxes and boxes of Legos (his favorite pastime) to help distract him while we were educated by doctors, nurses and diabetes educators from the incredible Naomi Berrie Diabetes Center on our new normal.
Now that I am part of this club I never signed up for, I hear veteran moms of diabetics complain about how little people know about the disease, and how “regular moms” can’t relate to what they and their families are going through. One mom told me of a nurse in her native country in Venezuela who asked if her diabetic 4-year old daughter needed to wear a surgical mask to class. A mask.
I understand their frustration, but I don’t add to their chorus because until a month ago, I was one of those people: a diabetes know-nothing. A month ago, it might have occurred to me to ask a mother of a diabetic if their child would be permitted to eat pizza or cake at my child’s birthday party, or if I should come up with a sugar-free alternative for them. (Let them eat cake, as they say — as long as they have a shot of insulin beforehand.) I love food. So much. But I wonder if I would elect to have a shot so I could “enjoy” a piece of cake.
Speaking of eating freely, I feel bad that my boy has lost that freedom. He can’t experience the joy of mindlessly munching from a cereal box while crashing for an exam, or unconsciously digging lo mein noodles out of a Chinese box-container while watching sci-fi movies with his buddies. (On the bright side, I’m thankful he will probably be a healthier eater — like it or not.)
Sometimes I worry I am turning into a monster stereotype of a Jewish mother — empowered by his condition to literally force-feed him to keep his blood sugar from dropping. I worry I am going to give him an eating disorder when he yells, “Let me eat my food my way” or angrily pushes his plate away, after I beg him to eat his bread and cake before his vegetables (contrary to all previous nutritional learning) so the insulin doesn’t kick in too quickly and lead to hypoglycemia. His diabetic management — the fucking formulas, rules and maddening exceptions to those rules — is all think and talk about lately. I’m worried he will sense this constant worry, despite my best efforts to play it cool.
I’m worried I’m drinking too much. Not so much amount really, but frequency. At the end of the day I want my medicine in a stem glass. On more dramatic days, I want two doses. (Don’t worry, I have never administered a needle tipsy. I make sure I have back up if I’m having that second dose of pinot grigio).
I am at school every day with my son. When he was first diagnosed over a month ago, it made obvious sense (Diabetes has a steep learning curve, even for a registered nurse). But once he got a monitor that allows me (and the school nurse) to check him from anywhere and sounds alarms if he nears a low or high, it seems less necessary. But the school is not comfortable managing him yet — specifically at meal times — so here I am, begging him to eat his lunchtime carbs, as well.
According to the Americans with Disabilities Act, a child at a public school is guaranteed an appropriate education in “the least restrictive environment appropriate to their individual needs.” But it has been suggested by our school’s principal that a child at a private school is not. So I don’t really feel like I have a choice.
When I first conceived of the title of this post (Does My Son’s Diabetes Make My Ass Look Big?), it was a half-joking reference to the weight I have gained since my son’s diagnosis. Stuck at school every day, I have been on a steady diet of cafeteria food for lunch — pizza, hamburgers, tacos, baked ziti; so consumed with counting my son’s carbs, I don’t keep track of my own. I used to eat salads for lunch after a morning of exercise. Now I gorge on fast food after a morning of sitting on my ass, staring nervously at his blood glucose numbers, ready to pounce (my only form of exercise of late).
Beating myself up about my weight before was a common phenomena before his diagnosis. Now it’s a luxury, as preoccupations go. Sure, I ripped a clear hole through my favorite Milly blazer when I reached to get a glass the other day. That kinda sucked. But the jeans that suddenly come unzipped — or don’t zip at all — are not life ending. They are life at this moment.
You see, I met a mom a few days ago at the Berrie Center for Diabetes, a mom with far less advantage and far fewer resources than I. She told of moving three states in as many years trying to find a system that was amenable to her child’s needs as a diabetic. Her last public school in a small town in North Carolina only had a nurse two days a week, so she ended up having to homeschool her. Naturally, she had to give up work — and life as she knew it — to do this.
Unable to afford the latest technology (and with no system dedicated to helping her find, much less afford, it), she moved to New York City, which, thanks to a strong progressive tradition, has generous public benefits and much stronger health protections than most southern states.
She now lives in a shelter. Even with that, SHE is thankful for the coordinator there who checks in on her and invites her into her office and closes the door so she can vent about how difficult it was to get her daughter to take her shot that morning, and then has the beautiful decency to ask how she is doing — as a mom, a woman.
This mom admitted to having an anxiety disorder before her daughter’s diagnosis, one exponentially enflamed by both her daughter’s fluctuating condition and her refusal to follow correct diabetic protocol. This is teenage rebellion with consequence. As a result of the isolation and the worry, mom has had episodes of dangerous depression, so much so that she insisted her daughter learn all the crazy diabetic formulas and rules of care in case she has to check herself into a hospital for mental illness.
She just got the Dexcom continuous glucose monitor for her daughter, but as it only communicates via Apple technology, her old Android phone is useless, diabetically. She needs to replace it with an iPhone so she can take advantage of the share feature which will allow her to track her daughter’s blood glucose levels on her phone, like I do with my son. But with what funds?
I felt both deflated — and, oddly, more fortunate than ever — after hearing her experience. I came home and discussed this woman’s predicament, undoubtedly shared by countless others, with my husband. He runs a social venture that supplies benefits to those in need who either didn’t know they were eligible or are too busy keeping their head above water to manage all the paperwork required to receive them. He has reached out to the diabetic center where we met to help this woman, and others like her.
It’s not a lot, but it’s something. I believe the best way to work through your own difficulties is to help others’ with theirs. So I am thankful for her, for giving us the possibility of paying it forward and helping my husband and I finally feel useful when we’ve felt so useless — and for that vital, if sometimes exacting, dose of perspective.